tag:blogger.com,1999:blog-62336252024-03-07T04:45:38.291+00:00Lisybabe's BlogYes, I'm well aware "Lisybabe" makes me sound like a teenage girl. But I was when I chose the handle and it kinda stuck.Lisahttp://www.blogger.com/profile/16714918894319998184noreply@blogger.comBlogger280125tag:blogger.com,1999:blog-6233625.post-10816862226810848282023-08-24T16:29:00.000+01:002023-08-25T01:46:36.893+01:00My beloved Betty [Content note: Pet death]<br>
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Back in November 2005, I wrote a <a href=http://lisybabe.blogspot.com/2005/11/pussy.html>very brief post</a> about my newly adopted, 3 year old cat Betty. She came home to her forever home on 26/11/05, and we spent 16 years together; until she died of kidney failure on 24/8/21.<br>
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Betty was by my side through the worst moments of my life. When my mum died in December 2008, Betty was who I cuddled when I got back to my parents' house from the hospital that night. She realised that sometimes people go away and don't come back; so for the next month she cried whenever she couldn't see me, which meant I had a lot of bowel movements to the soundtrack of a cat wailing outside the bathroom door. In April 2016, when I came home from the hospital on the day my dad died, she demanded to be carried around for the rest of the day, despite the fact that she usually <i>hated</i> being carried. And, of course, when the worst pandemic for a century struck; she was my companion while I shielded from a virus that could've easily killed me before vaccines were released.<br>
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A few months back, a journalist friend asked about experiences of pet bereavement during the pandemic. In <a href=https://www.theguardian.com/lifeandstyle/2023/jun/28/pet-taxidermy-cats-dogs>the final article</a>, Betty and I only got a one sentence mention, so I thought I'd publish here - on the second anniversary of her death - the full email I sent to s.e. about Betty and losing her.<br>
<br><blockquote>it was obviously harder than it would've been to lose her in non-pandemic times.<br>
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I was wearing an FFP2 mask when she was euthanised in my arms, but I'm not sure how much protection it offered considering I had to keep taking it off to blow my nose because it was filling up with snot. This is my final photo of her about 15 minutes before she died:</blockquote><br>
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<div class="separator" style="clear: both;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhEhexKAU6et1ruSFRGljTlufGA5XJ-f_Rcm-eq8sKTjEooXwNTRFzEUJie7yJhWZcXbEQcwyKf9vwWe38ayks5zicUku4gfUQwDrqbsFQLeiM2JkFCtZ_n13Ru6oH_UQyU4nM8i1Zsw2PlMPN_rPBpJ7Hy5PvzOZLnd505jTa5TpaObuTVBWePJg/s3088/IMG_2136.jpeg" style="display: block; padding: 1em 0; text-align: center; "><img alt="In the foreground is a black cat with white whiskers who appears to be gazing off to the right of the camera. She has a big red bandage on her right front paw. Behind her is the middle aged, brunette, bespectacled, white woman whose lap the cat is sat on. The woman's left arm is wrapped around the cat for support. The woman is wearing a white, duckbill-style FFP3 mask, and her face is red from crying so much. The backround is the interior of an animal hospital." border="0" height="320" data-original-height="3088" data-original-width="2316" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhEhexKAU6et1ruSFRGljTlufGA5XJ-f_Rcm-eq8sKTjEooXwNTRFzEUJie7yJhWZcXbEQcwyKf9vwWe38ayks5zicUku4gfUQwDrqbsFQLeiM2JkFCtZ_n13Ru6oH_UQyU4nM8i1Zsw2PlMPN_rPBpJ7Hy5PvzOZLnd505jTa5TpaObuTVBWePJg/s320/IMG_2136.jpeg"/></a></div><br>
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<blockquote>That night my friend came over for dinner, and although she brought some microwave ready meals, I was <i>really</i> craving curry, so we ordered in; I told her if she phoned the restaurant to see if there were mushrooms in the vegetable balti, I'd pay. The restaurant said they could do one without mushrooms if I added a note when ordering; but because of grief brain I immediately forgot and she had to call back and ask them to leave the mushrooms out of my balti.<br>
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It wasn't just the first time I ate indoors with other people since February 2020, it's still the <i>only</i> time I've eaten indoors with other people since February 2020; apart from that I've only eaten at tables outside cafes/restaurants/in pub beer gardens. The mental health benefits of having company that evening outweighed the risk that K might be infectious; and to be on the safe side I had all the windows and the back door open for ventilation.<br>
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In a way, Betty's kidneys picked a good day to give up: Betty died on the same day the 2020/2021 Paralympics started. She was still alive when the opening ceremony happened at lunchtime UK time, but she was dead by the time the sport started at 1am that night. It was really comforting to have live sport to watch all night overnight for the first 10 days without her. She used to sleep on my chest - she lost so much weight during her final illness that she really felt the cold even though it was summer - so she used me for warmth. At night when I missed the feeling of her weight on my chest I had the live sport on the telly for company.</blockquote><br>
<br><div class="separator" style="clear: both;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhDG2NGwEpH7CiHUlE7UAM9jrDmPUWsvTWp3aVmN-4GH4ipTKFOeVu77VZFwD0MV7oImOKVuuDmcHp2n24qx7B7y6Dp73c5LBObXHA-fMlw21J9ycL-CeG_aJAzIl2JIfZHuVW8TskQrlwgtML1DLJEhMevoPLRGUzSyO0bNmt6CrbR2PjUwhkY6Q/s3088/IMG_1961.jpeg" style="display: block; padding: 1em 0; text-align: center; "><img alt="A selfie of a middle aged, brunette, bespectacled, white woman, wearing a pink T-shirt and laying down on her back in bed; using a bunched up black duvet as a pillow. A black cat wearing a pink collar is laying on her front on the woman's chest - between the woman's boobs - with the top of her head resting on the woman's chin. The woman's eyes are open just a crack and looking at the camera, and she has a neutral facial expression." border="0" height="320" data-original-height="3088" data-original-width="2316" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhDG2NGwEpH7CiHUlE7UAM9jrDmPUWsvTWp3aVmN-4GH4ipTKFOeVu77VZFwD0MV7oImOKVuuDmcHp2n24qx7B7y6Dp73c5LBObXHA-fMlw21J9ycL-CeG_aJAzIl2JIfZHuVW8TskQrlwgtML1DLJEhMevoPLRGUzSyO0bNmt6CrbR2PjUwhkY6Q/s320/IMG_1961.jpeg"/></a></div><br>
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<blockquote>8.5 days after she died I was watching the sport and eating a vegan bacon butty for breakfast. I saw something on my lap and presumed it was a seed or crumb from my sarnie, so I picked it up cos I didn't want crumbs in my bed; when I realised it was one of her broken claws. No idea how it suddenly appeared on my lap more than a week after she died. About a month later one of her whiskers appeared from nowhere too.<br>
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I knew she was dying for 7 months, so I'd actually favourited some items of memorial jewellery on Etsy that I really liked before she died. The weekend after she died was a Bank Holiday weekend, and the maker of this necklace had a holiday sale for the weekend; so I ordered the necklace before I'd even got Betty's ashes back from the vet.</blockquote><br>
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<div class="separator" style="clear: both;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEiXQn7ojU8qDWBahWRw5VLjY2_7Vv_dci5pd3TpCBRvn4LD5GkBNVLTMo3rOKRyPL6rHYnczs7xre1lflPNL9dIgTna35mmN1Vi3XiHJ3I2GZURW-tccrCzqB-5lgnEvvg26sOdMckq6MhtPisa4ln71IpZK8eL7glqXI4sUxCuL3XsfrsHkovlug/s3024/IMG_4189.jpeg" style="display: block; padding: 1em 0; text-align: center; "><img alt="A silver chained necklace with a large pendant in its box. The pendant is heart-shaped clear acrylic. In the background of the pendant is a rainbow with vertical stripes. In the foreground on the left are some grey speckles, in the middle is a dried forget-me-not (a small blue flower), and on the right is a lock of black fur." border="0" width="320" data-original-height="3024" data-original-width="3024" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEiXQn7ojU8qDWBahWRw5VLjY2_7Vv_dci5pd3TpCBRvn4LD5GkBNVLTMo3rOKRyPL6rHYnczs7xre1lflPNL9dIgTna35mmN1Vi3XiHJ3I2GZURW-tccrCzqB-5lgnEvvg26sOdMckq6MhtPisa4ln71IpZK8eL7glqXI4sUxCuL3XsfrsHkovlug/s320/IMG_4189.jpeg"/></a></div>
<center><small>My Betty necklace. The grey speckles on the left are a tiny sample of her ashes, while the black lines on the right are a lock of her fur.</center> </small><br>
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<blockquote>The vet clipped a couple of locks of Betty's fur, but the lock in this necklace I actually put aside before Bet died. Betty <a href=https://youtube.com/shorts/l7ICm90lIyY?si=V3hImuRhU24GkfY6>went blind</a> a couple of weeks before she died (her kidney disease caused high blood pressure, and her blood pressure detached her retinas) so <a href=https://youtube.com/shorts/PCq000X3Olk?si=NfMG5WShw6KFPBV1>I bought her some stairs to get on the bed</a> because she was really anxious about making the jump: And a few days before she died I found these few hairs on the top step of the stairs; it looks like they were loose and came off when she scratched an itch. I put them aside in a little Ziploc bag I got some earrings in.<br>
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I love this necklace as a way to keep Betty close to my heart.<br>
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Although I have 11 piercings, I didn't have any tattoos until the first anniversary of her death. A friend of mine has a tattoo of his late dog's paw print over his heart and I loved the idea; and with his blessing I copied him and got Betty's paw print - that was taken by the pet crematorium before she was cremated - over my heart on the first anniversary of her death. I couldn't think of a better way to mark the anniversary, so I asked Twitter for recommendations of wheelchair accessible tattoo studios in northish London, because I think all the ones in Camden are either up or down a flight of stairs. A stranger who saw my tweet recommended a place in east central London, so I phoned them and asked about their access, and they said they'd recently had the whole GB Paralympic wheelchair fencing team in.<br>
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It was such a weird experience, I'm really squeamish about needles and my blood pressure often plummets during blood tests; I always have to ask the phlebotomist to fully recline the blood test chair to stop the blood completely draining away from my head. The tattooist wanted to do the tattoo with me sitting in my wheelchair and I was like "no, I really need to lie down." My blood pressure tried to plummet during the tattoo, but the pain kept my BP up; so I just ended up feeling woozy and sweating profusely. It would've felt less awful if I wasn't wearing an FFP2 mask.</blockquote><br>
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<div class="separator" style="clear: both;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgX2U8ZURvuPkCY2MvmLHMGpesxhTMlY1Cn13aWJSggn3OlmhVVThiPhEoOaC3Gtf_bz9Zw1Jorvo8Sx0zBdmgSKgnC-IJyiDjl3UA_c8-Ae9q8UV1OfVmvxWvzN-MUt_v47wFsp4ISZQabphIDaOM5UDke4YJVc3F_axObmmx_xOMSPPUiXqzuvg/s3088/IMG_5304.jpeg" style="display: block; padding: 1em 0; text-align: center; "><img alt="A selfie taken by a brunette, bespectacled, middle aged white woman wearing a blue FFP2 mask, laying on her back on a tattooist's bed. She's topless apart from nipple covers made out of kitchen towel that are taped in place. She has a tattoo over her heart of a cat's paw print, and the name 'Betty' below the paw print. The tattoo is black, and the skin around the tattoo is red where it's literally just been tattooed." border="0" height="320" data-original-height="3088" data-original-width="2316" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgX2U8ZURvuPkCY2MvmLHMGpesxhTMlY1Cn13aWJSggn3OlmhVVThiPhEoOaC3Gtf_bz9Zw1Jorvo8Sx0zBdmgSKgnC-IJyiDjl3UA_c8-Ae9q8UV1OfVmvxWvzN-MUt_v47wFsp4ISZQabphIDaOM5UDke4YJVc3F_axObmmx_xOMSPPUiXqzuvg/s320/IMG_5304.jpeg"/></a></div><br>
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<blockquote>(The tattooist insisted I wear nipple covers made out of tissue to protect my modesty.)<br>
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It hurt so much. The colouring in wasn't too bad, apart from a few times when he pressed down so hard it felt like he was trying to tattoo my sternum, but the outline felt like he was carving out a paw print-shaped area of flesh with a Stanley knife. The little gaps, the imperfections, are from the actual paw print. The tattooist asked me if I wanted them coloured in so it was solid black, but I wanted it to be an accurate reflection of her print.<br>
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<div class="separator" style="clear: both;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEipFnal2R3KE2aZcH9fQ0HSUVxcZ0pTI1wIDS2d_ImAwTjoeimLLOCXGz8QCSJZFCuTGGgVkjClr5aWyweoe-iCctw1y3ptoWtd4ohhUuw7v2TIDIYzaixO41AWpA7wLotezgqLp-PjZVLb5CIjOOTnDNPyvkyoAkacsMRl_ee1dIUsrCqhWhdIyA/s3088/IMG_5373.jpeg" style="display: block; padding: 1em 0; text-align: center; "><img alt="A selfie taken by a brunette, bespectacled, middle aged white woman wearing a pink v-neck T-shirt. She's wearing a necklace with a large pendant; the pendant is heart-shaped clear acrylic, in the background of the pendant is a rainbow with vertical stripes, and in the foreground on the left are some grey speckles, in the middle is a dried forget-me-not (a small blue flower), and on the right is a lock of black fur. She has a black tattoo in the middle of her chest, over her heart, of a cat's paw print, and the name 'Betty' beneath." border="0" height="320" data-original-height="3088" data-original-width="2316" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEipFnal2R3KE2aZcH9fQ0HSUVxcZ0pTI1wIDS2d_ImAwTjoeimLLOCXGz8QCSJZFCuTGGgVkjClr5aWyweoe-iCctw1y3ptoWtd4ohhUuw7v2TIDIYzaixO41AWpA7wLotezgqLp-PjZVLb5CIjOOTnDNPyvkyoAkacsMRl_ee1dIUsrCqhWhdIyA/s320/IMG_5373.jpeg"/></a></div><br>
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I hope it's a very long time from now considering I just adopted him; but I reckon there's room to get Biscuit's paw print below Betty's but still over my heart when he eventually goes. (Though he is 8, so I'm aware I'm not going to get 16 years with him like I had with Betty. But Betty died age 19, so I hope I'll have Biscuit for at least a decade; with being an indoor cat because of his sight - and the fact that he's so nervous that he runs under the sofa every time I open the door - at least that hopefully eliminates the risk of him being run over before his time, which is the cause of death for too many cats.)<br>
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Although saying it was harder than in non-pandemic times; I'm not sure what I'd have done differently if there'd been no covid. It's not like I'm blessed with lots of friends and could've thrown a massive wake for people who knew and loved her. I don't have family I could've invited over because they're all dead. Though, of course, it would've been better to not be wearing a mask during her final injection, and it would've been better to not be wearing a mask during the tattoo. She died a month after the lifting of mask mandates in England, so I didn't have to wear a mask during either her death or during my tattoo from a legal perspective; but I'm at high risk from covid, I'm still semi-shielding, so I had to wear a good mask for safety reasons.<br>
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She almost died twice during her terminal illness; from dehydration in April 2021, and from an infection in June. In April the first vet we saw refused to prescribe Betty subcutaneous fluids "because [I] don't have anyone else to do it." Since administering subcut fluids isn't a 2 person job, the implication was that she was going to let my cat die needlessly prematurely of a manageable symptom of kidney disease because I'm disabled and she didn't trust a cripple with needles. I asked for a second opinion with a different vet, and reminded them that it's against the law to treat us less favourably because I have a protected characteristic under the Equality Act. The second vet prescribed Betty subcut fluids <a href=https://youtu.be/y6muYTriUwM?si=iiYXmAsDC5t9aTmm>and taught me how to administer them</a>.<br>
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When she had the infection in June she came really close. The vet on the Saturday said she thought it was probably the end, but gave her a long-lasting antibiotic injection on the off chance it was an infection. On the Sunday morning she was really sick, and I spoke to the vet on the phone to get her prescribed an antiemetic injection to make her Sunday more comfortable before a final injection on Monday. Except throughout the course of Sunday she improved as the antibiotics got to work and by the early hours of Monday morning she was using me as a climbing frame, bouncing around so enthusiastically you'd never know she was so close to death 12 hours earlier. That weekend I was begging on social media for people I know IRL to be with me, because I was so scared and facing losing my best friend all alone, and no-one cared. On the Sunday before she turned around I cried so hard and for so long my chest muscles hurt from ragged breathing. I needed some company and didn't have anyone. This was more than a month after legal restrictions on mixing indoors with people not in your household had been lifted. So that's what I mean by I don't think things would've been different if she'd died in non-pandemic times.<br>
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<div class="separator" style="clear: both;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjmoOnAUvkfu6x7-esdlxM7iDI9uENd0ssbh6mp2vRJI3jTe5a4IekOtEvPoH1_oME18mY0VwZegrlGq720X1qQ8Ij50wMy9UqKMT318zoqKul3gxhjxURZ0bAJHuhtVlq1BZlFZfFxyEz7j4H3DhklNBmWQxmflDLmFmKvBDwifpgF-U3CrEbM6A/s3088/IMG_1353.jpeg" style="display: block; padding: 1em 0; text-align: center; "><img alt="A close up selfie taken by a brunette, bespectacled, middle aged white woman with a black cat with white whiskers standing on her left shoulder like a parrot. They're both looking at the camera; and the woman looks absolutely exhausted." border="0" height="320" data-original-height="3088" data-original-width="2316" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjmoOnAUvkfu6x7-esdlxM7iDI9uENd0ssbh6mp2vRJI3jTe5a4IekOtEvPoH1_oME18mY0VwZegrlGq720X1qQ8Ij50wMy9UqKMT318zoqKul3gxhjxURZ0bAJHuhtVlq1BZlFZfFxyEz7j4H3DhklNBmWQxmflDLmFmKvBDwifpgF-U3CrEbM6A/s320/IMG_1353.jpeg"/></a></div>
<center><small>A selfie of us taken in the early hours of 28/6/21, after the antibiotics had kicked in, when Betty was feeling better and was using me as a climbing frame. I'd had hardly any sleep all weekend which is why I look so shattered.</small></center><br>
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Although when she actually died, I was almost relieved that she'd had those two close calls earlier in her illness: It had given me the chance to psychologically prepare for her death. I genuinely believe her death day would've been harder if I hadn't had those two chances to really get used to the prospect of her dying. When she almost died in April I had a panic attack and was in an absolute state of terror. When she almost died in June I was sad beyond belief, and scared, but not in the same state of terror I had been in April. When the time actually came in August, of course I cried a lot, but also I felt ready to cope in a way I hadn't felt before when I faced losing her.<br>
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I hope some of this rambling is useful to you. Happy to answer any specific questions.</blockquote><br>
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As mentioned in the email, I now have another cat called Biscuit.<br>
<br><div class="separator" style="clear: both;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEiUBgh7hitlDf8xDPSc68g2OrnTJBDvSNgcZiOG2vL6VE2rL4zKrGaPOwtHpb1Dxb2rvvGS9wEXqyiKupVCGmLaF6zt_aHnrnU18XtThqO5H40shRqRTfs4YVmmDDwVqGzXE32-R2GoWSUEtD86p0BppVXtFigC8kmnr5tusEeXhMzbBojDI3DlOA/s4032/IMG_6914.jpeg" style="display: block; padding: 1em 0; text-align: center; "><img alt="In the foreground is a ginger cat in a loaf position with his head turned to look over his right shoulder to look at the camera. Behind him is a brunette, bespectacled, middle aged white woman, wearing a black T-shirt, leaning forward to kiss him on top of his head. They're both looking at the camera, and the cat's left eye is slightly cloudy." border="0" width="320" data-original-height="3024" data-original-width="4032" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEiUBgh7hitlDf8xDPSc68g2OrnTJBDvSNgcZiOG2vL6VE2rL4zKrGaPOwtHpb1Dxb2rvvGS9wEXqyiKupVCGmLaF6zt_aHnrnU18XtThqO5H40shRqRTfs4YVmmDDwVqGzXE32-R2GoWSUEtD86p0BppVXtFigC8kmnr5tusEeXhMzbBojDI3DlOA/s320/IMG_6914.jpeg"/></a></div><br>
I waited a year after Betty died before contacting <a href=https://twitter.com/holly>Holly's Merry Moggies</a> to enquire about adopting a new cat. I told her all about Betty and that I was an experienced cat owner. I told her that I was looking for an indoor cat because I have anxiety and I worry about cats getting run over, and that I was happy to adopt a disabled cat who needed to stay inside for safety; and I told her that Betty went blind so I have both experience with blind cats, and I have the access equipment a blind cat would need like stairs to get on the bed, and bells to put in strategic places for audio navigation. Holly thought about it for a while before matchmaking me with Biscuit: An anxious, visually impaired, ginger boy who desperately wanted to be an only cat; because he was intimidated by all the young, energetic cats at her rescue.<br>
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I'd spent 13.5 months catless before going and picking Biscuit up from Nottingham on October 4th 2022. The reason I contacted a cat rescue so far away rather than going to somewhere local was partly because the big rescues insist you let cats outside, and I wanted an indoor cat, and partly because of my <a href=http://lisybabe.blogspot.com/2005/06/pussy-pictures.html>negative experience trying to adopt from a big rescue in June 2005</a>. Although on that occasion it worked out right in the end; if that adoption hadn't fallen through, my (now passed) friend Sonia wouldn't have contacted me to ask if I was still looking for a cat, because her cat Betty desperately wanted to be an only pet and was getting into all sorts of scrapes because she didn't want to come inside the house with five other cats and a big St Bernard. (Pepsi the St Bernard was lovely, but that didn't matter to the cynophobic Betty.)<br>
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It's lovely having feline companionship again, but I still miss Betty every day; she was my best friend for 16 years, through all the terrible things that happened to me in those 16 years, she was always there with all the affection she had to give, and always there to make me laugh with all her silliness.<br>
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<div class="separator" style="clear: both;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEglGcAlRGQ_6vAjPc6q6lEhPKmIy-y22Qh7vXfQVtnzQOjTXMR6sFIQHd7QJLTaFxSUNWtckxtqmuGl-CacubUijr6QoQjEnBGmb7TnlxcqrQZFTSkK81o_SJnZLxipvKptkUgJz_n8u3vHXLbLCEIYcQj6LxL8SQtTdzNoLA_wyGhbD-UX2AWWlg/s500/IMG_1279.gif" style="display: block; padding: 1em 0; text-align: center; "><img alt="A selfie taken by a brunette, bespectacled, thirtysomething white woman, wearing a grey T-shirt and standing in a blue kitchen. She has a black cat with white whiskers standing on her left shoulder like a parrot. The cat rubs her cheek on the woman's face and then sniffs her mouth and nose; the woman pulls a kissy face in response." border="0" height="320" data-original-height="500" data-original-width="375" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEglGcAlRGQ_6vAjPc6q6lEhPKmIy-y22Qh7vXfQVtnzQOjTXMR6sFIQHd7QJLTaFxSUNWtckxtqmuGl-CacubUijr6QoQjEnBGmb7TnlxcqrQZFTSkK81o_SJnZLxipvKptkUgJz_n8u3vHXLbLCEIYcQj6LxL8SQtTdzNoLA_wyGhbD-UX2AWWlg/s320/IMG_1279.gif"/></a></div><br>
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Betty died at our local vet. Her kidneys had reached the point where she was completely unable to stay hydrated despite the subcutaneous fluids. Her liver was also going, and her blood test results indicated that she was also losing blood somewhere; likely in her digestive tract. I'd fought for her for seven months, but she'd finally started to suffer and it was time. She died sitting on my lap, abdomen to abdomen, with her chin and hands resting on my left shoulder, and my arms wrapped around her: She died wrapped in love. With her hands resting on my shoulder, the vet had to sit behind me to access the cannula in her right wrist to administer the injection. After, the vet asked me if I wanted some time with her body, to which I responded through tears "no, she feels horrible like this." (Once her muscle tone had gone it was like cuddling a cat-shaped bag of jelly.) The vet took her off my lap, laid her on a chair, and wrapped her in a blanket. As I was leaving I put my hand on her and said "I'm so sorry." To which the vet said "she lived much longer than most cats with her conditions because of the care you gave her." Which I know is true, as I said in the email above, she would've died of dehydration in the April if I hadn't fought for her to be prescribed subcut fluids; but I still wish I could've done more for her.<br>
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I loved her when she was young and playful and did parkour off the furniture every day. I loved her when she was old, calmer, and just wanted to either sunbathe or snuggle. I loved everything about her; I'm really sqeamish about needles, but I learned to give a cat subcutaneous injections for her. I'd have done anything to keep her healthy and happy for longer.<br>
<br>
<div class="separator" style="clear: both;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjy57ThptCpArm5foP-8ZpO4JF5z4oNyeApeVeEi9jfTBNYX8sMbvEQKecOh2a-wLfHduP-Zy0e2a7jBwHqiHaz6QHKe-GZ0WXoFqmpO9mZFtNBDNW1Jza1S296Ym-RLa3-mbKA4YErnhjYOOPOLzfkrh_M3JtFgdQBkIvbPHcUYQcC_ot4-VRFZw/s500/IMG_5687.gif" style="display: block; padding: 1em 0; text-align: center; "><img alt="A selfie taken by a brunette thirtysomething white woman, laying on her left side in bed, cuddling a black cat with white whiskers. At the start of the gif the cat has her head turned to the right to look at the camera, and she turns her head to look forwards. As the cat turns her head, the woman smiles slightly. They look very cosy together." border="0" width="320" data-original-height="375" data-original-width="500" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjy57ThptCpArm5foP-8ZpO4JF5z4oNyeApeVeEi9jfTBNYX8sMbvEQKecOh2a-wLfHduP-Zy0e2a7jBwHqiHaz6QHKe-GZ0WXoFqmpO9mZFtNBDNW1Jza1S296Ym-RLa3-mbKA4YErnhjYOOPOLzfkrh_M3JtFgdQBkIvbPHcUYQcC_ot4-VRFZw/s320/IMG_5687.gif"/></a></div><br>
<br>
<center><big><b>Betty Egan: 2002ish - 24/8/21</b></big></center>Lisahttp://www.blogger.com/profile/16714918894319998184noreply@blogger.com0tag:blogger.com,1999:blog-6233625.post-44191981574877576652015-12-10T17:26:00.000+00:002015-12-10T17:26:49.847+00:00Sound and Fury signifying... A fucking great wanker.When I was a teenager, <a href=http://lisybabe.blogspot.co.uk/2011/12/im-not-sure-all-these-people-understand.html target=new>swimming</a> was a massive part of my life. And through it all, I was keeping a massive secret.<br />
<br />
I loved doing really long distance training sessions. Partly because distance freestyle was what I was best at, but mostly because it gave me time - slogging up and down the pool - almost alone with my thoughts. I say "almost alone" because, obviously, there were dozens of people all around me. But you only get to interact with them once every 400 metres or so. So you're alone with your thoughts despite being surrounded by people.<br />
<br />
How would I tell people I was gay? <i>Should</i> I even tell people I was gay? What would happen if I did tell people? Would people be really uncomfortable about me in the changing rooms?<br />
<br />
I didn't know any openly gay swimmers. At all. Not in my swimming team, not anywhere.<br />
<br />
There was an openly gay teacher in the area who was very well known among the whole swimming community. And I heard the things people said about her behind her back.<br />
<br />
<small>She had me sussed out before I'd told a soul on this earth. She was my course tutor when I qualified as a swimming teacher and one day we were watching a video of a male Olympian doing technically flawless breaststroke. The 4 other women on my course were going "oh he's so hot." And I said "eh, he's not my type." She totally shot me that "yeah, I know" look.</small><br />
<br />
Coming out is hard. But coming out in sport is even harder. <br />
<br />
Although this was the 90s and there was less LGBT visibility back then, I had a pretty good idea that most of my other friends from outside sport would be totally cool.<br />
<br />
I was way more worried about telling people from swimming.<br />
<br />
One day my coach said to me "I think you're a bit of a closet hippie."<br />
<br />
I just laughed because I so wanted to say "that's not the only thing I'm in the closet about."<br />
<br />
But I didn't say it, obviously.<br />
<br />
Almost 20 years later there are a few openly gay athletes, including Olympians and Paralympians, but surprisingly few compared to other arenas of life. So young aspiring athletes are still probably ploughing up and down swimming pools or running round tracks wondering "what's going to happen if I tell people?"<br />
<br />
Which brings me onto Tyson Fury. A man who looks and sounds like he went "wait a minute: I can actually make a living out of punching people in the face? Awesome!"<br />
<br />
Yes, he's currently the world champion at punching people in the face. Which must take a lot of practice at punching people in the face. <br />
<br />
Being world champion at anything takes hard work and skill, whether your personal beliefs are harmful or not. It's a shame that being good at a thing also gives you a platform from which to vomit your homophobic and misogynistic views, but apparently it does. <br />
<br />
And I'm not going to argue that he shouldn't be allowed to compete in the ring because of the things he says out of the ring; however dispiriting his presence in the sport may be to young LGBT boxers fighting with themselves over whether or not to come out.<br />
<br />
But the BBC's Sports Personality of the Year - as the name suggests - isn't just about being a talented athlete. It's about being a sporting <i>personality</i>. And his personality is a cruel, toxic, one. Now matter how talented an athlete he is.<br />
<br />
The BBC have refused to remove him from the shortlist of contenders (<a href=http://www.theguardian.com/sport/2015/dec/10/bbc-journalist-suspended-tyson-fury-spoty target=new>though they did suspend a gay man who criticised him</a>). But here's the thing: The award isn't pre-determined; it's open for public vote.<br />
<br />
The British public can tell everyone that "we don't support personalities this hateful," by voting for anyone but him. Of course, there are 11 other nominees and if all anti-Fury votes are evenly distributed among them; he might still win. So dare I suggest that we all back Jess Ennis-Hill; the subject of some of his misogynistic bile?<br />
<br />
The way to show young LGBT people - especially young LGBT athletes - that it's OK to be who you are, and no-one agrees with Fury is to vote against him. So please do. And just maybe a few young LGBT sportspeople coming to terms with who they are will feel a little more embraced knowing Fury got shat on by a whole country of voters.Lisahttp://www.blogger.com/profile/16714918894319998184noreply@blogger.com0tag:blogger.com,1999:blog-6233625.post-14175540450314675072015-10-16T22:11:00.000+01:002015-10-16T22:11:35.937+01:00Being AloneI know from past experience that there's no faster way to lose friends than to talk about your mental health; but I'm going to anyway. Because I just can't help but think how many of us would be less depressed or less afraid if our society was just... Better.<br />
<br />
I mean there's the obvious: People who depend on help from the state are fucking terrified because social security is no longer secure.<br />
<br />
But my anxiety/panic lately has been about way more than just money. And I just keep thinking "I wish I had someone to hold me and tell me everything will be alright." But I don't.<br />
<br />
I don't necessarily mean a partner. It's perfectly possible for a platonic friend to hold you and make you feel safe.<br />
<br />
I know the show was massively unrealistic in a number of ways; but I keep thinking of <i>Friends</i>. Let's use Phoebe as an example. If she'd had a weekend of panic attacks and needed someone to stay with her all night to make her feel safe; you know that one of the other 5 would have obliged. Because they were close friends.<br />
<br />
I was incredibly lucky on Sunday when I was panicking that one of my neighbours was home so she sat and watched <i>Downton Abbey</i> with me for a little while. But a couple of days later my cat was ill again and I posted on Facebook asking, once again, if anyone was free and no-one replied. (Luckily after I got home from the vet I wasn't as anxious as I expected I would be when she first started pissing blood again.)<br />
<br />
The reason I'm writing this isn't because I want pity. Or I want attention. Or anything about me really.<br />
<br />
Surely I can't be alone in being alone.<br />
<br />
There must be thousands of people - maybe hundreds of thousands of people - who are in my shoes: No partner, no children, no siblings, no mother, no friends they see regularly. People who got left out and left behind when their friends from the past all got careers, got married, started families. Or even people who have got careers, but see no-one outside of work.<br />
<br />
And I'm writing this from the fairly privileged position of someone with an internet connection and quite a few social media contacts who've offered to be there for me via Skype. (Although today's been one of those days when I've felt like I'm Tweeting/Facebooking/blogging into a void and no-one's listening at all.)<br />
<br />
How did people like me end up on the scrapheap of life? And how can we fix society so we aren't so alone?<br />
<br />
How many people have to do what I did this week and see a doctor having a panic emergency; when we wouldn't have been in a state of panic if we only had people around us that made us feel safe? This time last week I was on the phone to The Samaritans just because I was terrified and didn't know who else to talk to.<br />
<br />
Sure, maybe someone holding me and reassuring me wouldn't have made any difference and I'd still need medical help; mental illness isn't totally socially created. But our social structures matter in how we think and feel. Just like poor housing has a negative impact on your physical health; poor social networks have an impact on your mental health.<br />
<br />
And I'm not talking about setting up some formal, professional, support group for those of us that society likes to avoid. Or some condescending befriending scheme based on pitying the poor lonely people. I mean real social change so people like me are seen as real human beings with value that are worth spending time with.<br />
<br />
I know it's idealistic: But why can't we live in a world where a group as diverse as a waitress, a chef, a masseuse, a frequently unemployed actor, a data-something-or-other and a palaeontologist can all be besties?<br />
<br />
You'll have to forgive me talking about TV a lot; but my TV and my cat are the only support networks that I physically encounter every day. I sometimes go weeks - even months - without seeing other humans in a friendship capacity. Yes I see humans in their professional capacity as doctors, doctors' receptionists, pharmacists, vets, staff in shops, etc. But there's that professional boundary between us. <br />
<br />
I don't know where I'm going with this ramble. I just know I'm not alone in being alone. It's not just us benefit scroungers at the bottom of society: Throughout all walks of life some people are isolated by circumstance. Because our world is fucked up, and I wish it wasn't.Lisahttp://www.blogger.com/profile/16714918894319998184noreply@blogger.com8tag:blogger.com,1999:blog-6233625.post-10018521815646836762015-10-10T15:31:00.000+01:002015-10-10T15:51:52.285+01:00Pain and fear, fear and pain. #WMHD2015 #WorldMentalHealthDayTrigger warning: This post contains discussions of fear and anxiety, medical negligence, animal illness, accidental injuries, suicidal ideation and general panickyness.<br />
<br />
<br />
<a name='more'></a><br />
This post was originally written on another social media and filtered only to friends who I knew had taken opiates and opioids like tramadol, buprenorphine, oramorph, fentanyl, pethidine, or even just very high doses of codeine, etc. Whether because they have a chronic pain condition or whether they'd just taken it once post injury or surgery. But when lots of people said they knew someone that had experienced anxiety or terror caused by taking painkillers I thought I should make this public.<br />
<br />
Lately I've been dealing with really bad anxiety. Last night I was about 1 degree of anxiety away from having a panic attack and ended up calling the Samaritans just to calm down. Because I don't have anyone at all in real life to support me and hold me and tell me it's OK if I do have a panic attack.<br />
<br />
I know I've got things to panic about: <a href="http://lisybabe.blogspot.co.uk/2014/12/accidents.html" target="new">What happened last Christmas really shook me. That I can have such a bad accident and be so injured and get kicked out of not just one A&E</a>, <a href="http://lisybabe.blogspot.co.uk/2015/01/pics-or-it-didnt-happen.html" target="new">but two</a>. It's left me with the knowledge that if I have a bad accident again, I know A&E can't be trusted to help any more. So I'm scared of having another accident bad enough to need A&E help in case I don't get it again.<br />
<br />
<a href="https://twitter.com/LisysBettyCat/" target="new">Betty</a> being ill really shook me up too. Kidney failure is so common in older cats that when she started pissing blood I thought "this is it, I'm losing her and she's basically the only being on earth that cares about me." She's fine now, it was just an E coli bladder infection and she's had antibiotics, but it scared the living shit out of me.<br />
<br />
And then there's the risk of my dad's social care package being cut to shreds because of the ILF closure. I don't even know what's going on because he doesn't care enough to pay enough attention to know himself what they're doing. (Not that he care's about me, of course. But I at least lose sleep over him.)<br />
<br />
So why am I telling my crazy lady woes to people who take painkillers?<br />
<br />
Because my anxiety attacks seem to be linked with taking oramorph.<br />
<br />
I'll be fine all day and after I've been standing too long on my fucked up swollen knees I'll be like "right, I can't take this any more, I'm having a small dose of oramorph"<br />
<br />
(FYI, 2.5ml of oramorph is equivalent to 1 tramadol tablet.)<br />
<br />
And that's when the fear begins. Like I'm not terrified of using scissors in case they slip and I accidentally stab myself in the opposite hand until I take painkillers. I'm not terrified of having to go throw out rubbish in case I fall down the stairs until I take painkillers. I'm able to snuggle Betty without flashbacks to her bleeding and me being terrified until I take pain relief.<br />
<br />
Painkillers are supposed to be a serious *anti-anxiety* med. That's why people take them recreationally. And I used to feel that until about 3 weeks ago. It was a brilliant bonus, like "hey, the pain's better and now I feel as mellow as hell." And now I get a migraine, take something for it, and feel like the world is going to end.<br />
<br />
Honestly; I've felt suicidal in the past and it's a better feeling than feeling like you're going to panic yourself to death. Not just for a brief panic attack, but for a whole day.<br />
<br />
So <a href="https://www.google.co.uk/search?q=morphine+causing+anxiety&ie=utf-8&oe=utf-8&gws_rd=cr%2Cssl&ei=l9wYVpT4B4jgabqptvgE" target="new">I googled it to see if I was just weird; considering they're supposed to relieve anxiety, not cause it.<br />
<br />
Most links are about withdrawal causing anxiety, not taking the drug being the cause. Or about morphine relieving anxiety. But there are several references to morphine causing anxiety. So I'm not completely alone.</a><br />
<br />
So, yeah. I've basically got to put up with pain because the alternative - painkillers - is worse. I think I'm going to be spending a lot of time in bed in the foreseeable future because keeping my knees elevated is the only thing to reduce the swelling enough to stop the pain. Seeing as painkillers to mute the pain is impossible.<br />
<br />
I can't believe this is happening. I mean; I've had some shit drug side effects in my time. But absolute terror? Jesus.<br />
<br />
My shoulder is throbbing. My knees ache. And I can't take anything other than paracetamol for it.Lisahttp://www.blogger.com/profile/16714918894319998184noreply@blogger.com0tag:blogger.com,1999:blog-6233625.post-74096215817426590372015-05-29T10:30:00.000+01:002015-05-29T10:30:00.990+01:00Just put the shovel down, Ted. #StellasChallengeSometimes, you really have to stop digging. TEDxSydney need to learn this lesson.<br />
<br />
Last year <a href=https://www.youtube.com/watch?v=SxrS7-I_sMQ target=new>Stella Young gave a talk at TEDxSydney about Inspiration Porn</a>. She <a href=http://lisybabe.blogspot.co.uk/2014/12/death.html target=new>died</a> seven months later. So, TEDxSydney decided to launch a memorial challenge at this years event which they called <a href=https://twitter.com/search?q=%23StellasChallenge&src=tyah target=new>#StellasChallenge</a>.<br />
<br />
So far, so good: Remembering great people we've lost is really important to keep their thinking and ideas alive.<br />
<br />
Except the "challenge" was so bad it's clear they didn't pay any attention to the speech given at their event and then posted on their website.<br />
<br />
The challenge was to go out and interview random disabled people (or "people with disabilities" as they called us) about our social problems. I can't link you to the page which they used to launch the challenge because they've deleted all that content from the page and replaced it with some other rubbish. Like I said they've got the shovels out to dig themselves a hole and I guess they hoped that if they deleted the content, we'd empty our poor little disabled heads of their fuck up.<br />
<br />
However, they encouraged their fans to ask us disableds their probing questions via an app and posted a page of instructions on how to do it. Now because they deleted that page entirely (rather than just deleting the content but leaving the page on their website) <a href=http://webcache.googleusercontent.com/search?q=cache:http://www.tedxsydney.com/site/item.cfm?item=A190027308FBC470C55AFC566F2016CC target=new>it's available via Google Cache</a>. And it tells you all you need to know.<br />
<br />
In Stella's talk, she talked a lot about the objectification of disabled people. And so they created a memorial challenge which objectifies disabled people and treats us as self-narrating zoo exhibits.<br />
<br />
Just look at the fucking questions TEDxSydney wanted nosey bastards to ask us:<br />
<br />
<blockquote><i>Would you mind if we talked about your disability first, so that I can understand how best to refer to it, and would you mind if we explored how it has impacted your life?</i><br />
<br />
"I'm a social modelist. My disability is the social, architectural and attitudinal barriers that prevent me from living as a full and equal citizen. I guess you were hoping I'd spew up information from my medical history? Well, tough luck. My diagnoses are my personal history to share as I see fit, not public domain information you have a right to demand from me."<br />
<br />
<i>Have you encountered attitudes that you would like to change?</i><br />
<br />
Yes. The attitudes of people like you.<br />
<br />
<i>What one thing can we do today to make a change towards social inclusion for disabled people?</i><br />
<br />
Stop harassing us and demanding our personal information while we're just out trying to buy tampons.</blockquote><br />
But it gets worse. Apparently no-one at TEDxSydney has ever heard the disability rights mantra "nothing about us without us" because they want to ask probing questions of carers too like:<br />
<br />
<blockquote><i>Can you tell me who you are, what role you play for someone with a disability. How long have you done this and for whom?<br />
<br />
What impact does this have on family life?<br />
<br />
How do you think Australians view people with a disability? Can you give examples of why you think this?<br />
<br />
How does that make you feel?</i></blockquote><br />
If someone wiped my arse and they blabbed about it to some wankstain with a recording app on their phone, they'd be fired fucking fast. If someone assists me with my personal daily activities then what they do for me is confidential. Clearly no-one at TEDxSydney thought "Hmmm. If someone washed me genitals for me, would I consent to that person telling the world about it?" <br />
<br />
It's also noteworthy that the carers get asked about their feelings and the impact on family life. I guess because we're just objects we don't have feelings. Or families.<br />
<br />
It's just so obvious that they paid no attention to anything Stella said either during their talk for them, or at any other point during her career.<br />
<br />
Stella, <a href=http://www.xojane.com/issues/i-am-not-a-person-with-a-disability-i-am-a-disabled-person target=new>like me</a>, used social model language. She had <a href=http://www.abc.net.au/news/2012-11-15/young-reporting-it-right/4371912 target=new>written about her feelings about language in the past</a>, and in her TEDx talk clearly says "I use the term disabled people quite deliberately because I subscribe to what's called the social model of disability," yet TEDxSydney insist and persist with saying "people with disabilities" in a "challenge" that supposedly memorialises someone who objected to that mindset.<br />
<br />
Stella had also <a href=http://www.abc.net.au/rampup/articles/2012/03/27/3464847.htm target=new>written her objections to strangers demanding our diagnoses from us</a>. Yet this is the first thing those TEDx tossers wanted strangers on a train or people taking our chai order to know about us.<br />
<br />
Unsurprisingly it turned into a social media shitstorm. After 2 days TEDxSydney finally said "we were wrong, we're sorry."<br />
<br />
Not that bloody sorry though because their apology is another thing they've deleted from their website. The hole they've dug is now basically their own grave, isn't it? The only remnants left of their brief sorrowful phase is a tweet:<br />
<br />
<blockquote class="twitter-tweet" lang="en"><p lang="en" dir="ltr">TEDxSydney Impact issues an apology for <a href="https://twitter.com/hashtag/StellasChallenge?src=hash">#StellasChallenge</a> <a href="http://t.co/3VqUkETg5G">http://t.co/3VqUkETg5G</a></p>— TEDxSydney (@tedxsydney) <a href="https://twitter.com/tedxsydney/status/601990671692500992">May 23, 2015</a></blockquote><script async src="//platform.twitter.com/widgets.js" charset="utf-8"></script><br />
<br />
(But there's no point in clicking the link in the tweet, because, as I said, the apology has been deleted. I'm surprised the tweet is still up.)<br />
<br />
Just when you think it couldn't get any worse: The medical model language, the objectification, the demanding of medical histories, breaking the "nothing about us without us" rule, apologising and then deleting the apology from their website: They grasped those shovels even harder and dug ever deeper.<br />
<br />
Apparently us poor little disableds weren't upset because the challenge was an insult to our humanity. Apparently we're can't know what we are or are not upset about. Hundreds of people told TEDxSydney what bothered us about the project, but we don't know our own minds so they have decided that our problem is...<br />
<br />
<blockquote>The community is still grieving Stella’s tragic death, and we recognise that it is too soon to be using her name. We will rename this project in consultation with people with disabilities.</blockquote><br />
<small>From <a href=http://www.tedxsydney.com/site/item.cfm?item=CFD0C7C097C1EE4322C3813BFBE50B6F target=new>this page as it currently stands, but don't be surprised if they delete all the content again by the time you visit the site</a>.</small><br />
<br />
Yep, they're going to go ahead with the insulting, dehumanising self-narrating zoo exhibit project. Just taking Stella's name off. This is as wrong as they could possibly be.<br />
<br />
The project is wrong. Everything about it is wrong.<br />
<br />
A well thought-out project by which to remember Stella is a great idea. Like I said, we need to remember the ideas of the great thinkers we've lost.<br />
<br />
So they want to ditch the notion of remembering Stella but keep the idea of exploitative probing. There's that thunk, thunk, thunk of shovels again.<br />
<br />
TEDxSydney could organise a remarkable memorial event. They could gather together some of the great disabled thinkers of our time and hold a 'TEDxSydney remembers Stella Young' event. They wouldn't even need to limit themselves to Australian thinkers, <a href=http://www.news.com.au/technology/stephen-hawkings-3d-double-beams-into-sydney-opera-house-via-hologram/story-e6frfrnr-1227321197186 target=new>as modern technology means that we can deliver a talk at the Sydney Opera House while our body is in another country</a>.<br />
<br />
But instead they want to ditch the idea of remembrance and go with the idea of exploitation and harassment.<br />
<br />
I can hear something scratching under the floor. I think TEDxSydney might have dug themselves a hole so deep that they've gone right through the centre of the earth and hit London.Lisahttp://www.blogger.com/profile/16714918894319998184noreply@blogger.com3tag:blogger.com,1999:blog-6233625.post-31136251309216789002015-05-01T23:17:00.000+01:002015-05-02T15:55:45.431+01:00How many politicians does it take to throw 18% of the population under a bus? #BADD2015 #GE2015<i>This was written as part of <a href=http://blobolobolob.blogspot.co.uk/2015/05/blogging-against-disablism-day-2015.html target=new>Blogging Against Disablism Day 2015</a>.</i><br />
<br />
This time 18 years ago I was so ridiculously full of fucking hope. <br />
<br />
Being born 13 days after Thatcher moved into Downing Street I'd only ever known Conservative rule. All I knew was a life of being broke and shat on by the political class. <br />
<br />
But in the run up to the 1997 general election - with my naive teenage optimism - I was so excited at the prospect of Labour swooping in and making life better. And God I was pissed that I couldn't vote. Like I said, I was born 13 days after Thatcher came to power, which means that on May 1st 1997: I was 16 days too young to vote. But I had the front bedroom in our house and duly stuck a "Vote Labour" poster in my window.<br />
<br />
Labour had done great things in the past: The NHS, the welfare state and council housing in the 40s. In the 70s they gave us Attendance Allowance and Mobility Allowance which, in 1992, the Tories merged into Disability Living Allowance. (The Tories like to claim they "created" DLA: It's a lie. They just took 2 existing allowances and rolled them into one unified benefit with one application form.) I wanted Labour to continue to make life better for people in similar shoes to my own.<br />
<br />
I was a fucking fool.<br />
<br />
They swiftly got rid of grants for living costs during university. Had I gone to university in September 1997 when I was 18 I'd have gotten a grant. But I didn't go to uni until 2000, and by that time they'd abolished the grants that they took for granted (ha!) during their own education. The Student Loans Company was a Thing. <br />
<br />
Coming from a family with zero money they couldn't support me so I couldn't eschew loans and live off Mum and Dad. Coming from a family with zero money I was eligible for the maximum amount of student loan; which also meant maximum debt. Thanks for the financial ball and chain Tony.<br />
<br />
Then, in 2008, Labour gave us the brutal Employment & Support Allowance to replace Incapacity Benefit for people too ill to work. Instead of developing a progressive social security system that improved the lives of the people Labour had historically helped in the past: They actually regressed the welfare state.<br />
<br />
Sure, Labour weren't completely without their merits. They brought in Education Maintenance Allowance, they slightly beefed up the Disability Discrimination Act in 2005, and they introduced Civil Partnerships. But cancelling student grants, bringing in tuition fees, and torturing people who are too ill to work is hardly what you'd expect of a party that's supposed to represent the Labour movement.<br />
<br />
Now we're in 2015 and there isn't a speck of hope or enthusiasm anywhere within me.<br />
<br />
This entire election campaign is built on "who can be the most disablist?" Because shitting on disableds is fashionable and apparently a guaranteed vote winner. <a href=http://wheresthebenefit.blogspot.co.uk/2015/05/a-life-on-benefits-is-frankly-no-life.html target=new>Latentexistence had a look at one of Cameron's remarks about life on benefits over at WtB</a> while <a href=http://wheresthebenefit.blogspot.co.uk/2015/05/manifestly-abusive.html target=new>DavidG had a look at some of the party manifestos</a>. Which saves me a bit of trouble, although David skipped Labour and Green (a bit like <a href=http://www.bbc.co.uk/news/election-2015-32514019 target=new>Hull City Council</a>).<br />
<br />
In Labour's '<a href=http://www.labour.org.uk/blog/entry/a-better-future-for-disabled-people-manifesto target=new>disability manifesto</a>' they say they want to "ensure disabled people have a voice at the heart of government." Listening to disabled people and hearing our voices is something they've talked about a lot. They're so busy talking about wanting to listen to us that they're not actually listening.<br />
<br />
Disabled people have been saying that we want the Independent Living Fund saved, <a href=http://www.disabilitynewsservice.com/labour-finally-admits-wont-save-independent-living-fund/ target=new>Labour will close it</a>. <br />
<br />
Disabled people have been saying that we want DLA restored with the lower rate care component and the walking distance for qualifying for the high rate mobility component set at 50 metres. Labour will keep PIP and their only related pledge is to <a href=http://labourlist.org/2014/12/the-6-policies-labour-will-introduce-to-help-change-the-lives-of-disabled-people/ target=new>fix the backlog</a>.<br />
<br />
Disabled people have been saying that they want the toxic Work Capability Assessment scrapped and a fair assessment of a person's fitness for work brought in. Labour <a href=http://www.independent.co.uk/voices/comment/how-labour-would-reform-the-work-capability-assessment-9265479.html target=new>are going to keep the WCA and just tinker around the edges a bit</a>. The most hilariously insulting proposal is that they're going to give us information about how our condition affects our ability to work; like disabled people aren't already aware of what we are and are not capable of.<br />
<br />
Yes, Labour are better than the other big party. They're going to axe the bedroom tax, <a href=http://www.bbc.co.uk/news/uk-politics-27963650 target=new>"pause" (not halt) Universal Credit</a>, and in their disability manifesto they say they're going to "review" the coalition's cut to Disabled Students' Allowance. But given the cuts they're <i>not</i> going to reverse, it's clear they're not standing up for us. They're just less cruel than the alternatives.<br />
<br />
They're basically trying to straddle the disablism line. Hitting disabled people with enough cuts to try and appeal to some Tory/UKIP voters, while throwing us one or two bones to try and win our votes too.<br />
<br />
Then there's the Greens. So much of what they say is so right. They're the only party that's pledged to save the ILF, and all sorts of other good stuff.<br />
<br />
But if you think their pledge to legalise voluntary <a href=http://lisybabe.blogspot.co.uk/2014/03/if-you-were-me-then-youd-be-screaming.html target=new>assisted suicide</a> was frightening; one of their health policy pledges is enough to scare the shit out of anyone whose life sucks. Or could be considered to suck by medical professionals.<br />
<br />
It's hard to tell you what number that health policy pledge is, because it keeps changing. It was HE347, but <a href=http://policy.greenparty.org.uk/he.html target=new>on their website currently it's HE524</a>. Anyway, this is it: <br />
<br />
<div class="separator" style="clear: both; text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjYE-F1GgYRavpVAltd5J1AgsoJubek8uRir6jGClZfQE0rX8hkMUuWwO6uaYe0LOcYpM4Z7_JZlM-yeL3lQANEFFIg4JfAT5vzetKlsE7-iSHKbL8I8tKnKQJhMOnzRw0Kjs6nYQ/s1600/HE524.jpg" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjYE-F1GgYRavpVAltd5J1AgsoJubek8uRir6jGClZfQE0rX8hkMUuWwO6uaYe0LOcYpM4Z7_JZlM-yeL3lQANEFFIg4JfAT5vzetKlsE7-iSHKbL8I8tKnKQJhMOnzRw0Kjs6nYQ/s1600/HE524.jpg" alt="Screengrab of some text that says 'HE524 The Green Party recognises that medical decisions taken towards the end of a person's life should never be undertaken lightly. We believe that when the quality of life is poor (e.g. due to severe dementia) life prolonging treatments such as influenza vaccines and antibiotics should not be given routinely without consideration of the whole situation including the wishes of the patient and relatives.'"/></a></div><br />
The wishes of the patient and family should be taken "into consideration"? Fuck that shit. If someone with a "poor quality of life" has a treatable condition like a chest infection, and they want treatment, they should be entitled to treatment. Period. Doctors are pretty bad at judging the quality of life of disabled people. They'd probably judge the quality of life of a ventilator-dependent person as "poor", when actually that person might have a brilliant job and family life and generally be really bloody happy.<br />
<br />
Anyone who wishes to refuse medical treatment has that option. If someone terminally ill wants to expedite their death by refusing treatment for something treatable; they already have that right. This policy basically comes down to giving doctors the right to refuse to treat anyone whose life <i>they</i> consider to be poor.<br />
<br />
I'm left-wing. I should be a natural Labour or Green voter. Labour should be properly anti-austerity and true to their roots. The Greens shouldn't have fucked up proposals about wanting to withhold life saving care. <br />
<br />
I haven't explored the Tory, UKIP or Lib Dem disablism. I was going to, but <a href=http://wheresthebenefit.blogspot.co.uk/2015/05/manifestly-abusive.html target=new>David beat me to it</a>. Needless to say: I won't be voting for any of them.<br />
<br />
All this hate has had me in a serious depression of late. People who follow me on social media might have noticed I've been around a lot less lately, but that's because I just can't face it. Every time I turn on my computer I'm just faced with the constant stream of stuff about the election and it's crushing my soul. Life really fucking sucks if you're disabled in the UK right now. This time next week we'll either have a Labour PM who's going to axe the bedroom tax, but won't do anything else to make life better. Or we'll be stuck with fuckface and his smug chums for another 5 years and things will be <a href=http://www.bbc.co.uk/news/uk-32084722 target=new>a hell of a lot worse</a>.<br />
<br />
The ideal outcome from this election would be a rainbow-left coalition. The SNP, Plaid Cymru and the Greens would force Labour to the left of their current position, and hopefully Labour and the SNP would veto any of the Greens' kookier ideas. But Labour have ruled out a deal with the SNP and the Greens have ruled out a deal with Labour. So the very best week can hope for is "getting rid of the bedroom tax and everything else staying as shit as it's on course to be anyway."<br />
<br />
So I've been burying my head in the sand. Trying to avoid it all because I just can't deal with the fact that life isn't going to get better than this. The first thing I do when I get up in the morning is check the late-night TV schedule to plan what I'm going to watch while getting ready for bed. That's literally all I have to look forward to of a day: The day ending again. And inbetween times I've been watching a hell of a lot of <i>Criminal Minds</i>: Because fictional serial killers are less bleak and depressing that real-life politicians.Lisahttp://www.blogger.com/profile/16714918894319998184noreply@blogger.com1tag:blogger.com,1999:blog-6233625.post-83770266768756712822015-01-29T23:20:00.000+00:002015-02-01T13:49:55.646+00:00LucyAnother friend of mine died today. That's three in three months.<br />
<br />
This time it was the wonderful <a href=http://www.theguardian.com/profile/lucy-glennon target=new>Lucy Glennon</a>.<br />
<br />
I can't remember the first time I met her online; you repeatedly cross the paths of other Tweeters, writers, activists, and friends of friends until you get to know that person. But I do remember the first time I met her in real life. It was at the <a href=http://www.theguardian.com/society/joepublic/2011/may/11/disabled-people-hardest-hit-march-in-london target=new>Hardest Hit march in London</a>. <br />
<br />
The gathering point for the start of the march was on the Embankment. I was heading east to west to meet my friends Mandy and Lou, and I saw Lucy go past heading south to north about 75 yards in front of me. I recognised her immediately from photos I'd seen of her online. I yelled out "Lucy!" in my sort-of female Brian Blessed boomy voice that can be heard for about half a mile. Her and the 2 people she was with all heard me and stopped, despite all the background noise. We only chatted for a few seconds because I was looking for Mandy and Lou, and she was heading towards the others from <a href=http://www.debra.org.uk/ target=new>debra</a>. I think the next time I saw her was at another Hardest Hit event, this time a static rally outside City Hall. The static nature meant neither of us were dashing around finding other people so we could sit and chat.<br />
<br />
Considering we only lived about half a mile apart, we really didn't see each other as much as we should have. When I first met her she was living in an inaccessible block of flats, but eventually rent rises and benefit cuts meant she was forced to turn to the local council to be rehoused into a council flat. This also meant she got allocated a wheelchair accessible flat. She moved to the big new development in Kings Cross, into one of the first blocks of flats to be opened.<br />
<br />
Every time I moaned about my flat being not accessible enough she would tell me that I should ask the council to be rehoused because they were building more accessible properties in the development she lived in, and it'd be so cool if we were neighbours. And it would have been cool to have a really great friend in the block of flats next door, but it wasn't to be. As nice as it would be to live in a better flat, moving is so crushing both mentally and physically that I just couldn't face it.<br />
<br />
Lucy would often post information about EB on Twitter and Facebook (not to mention photos of her hanging out with people like Sean Bean and Damien Lewis at EB fundraising events) so I knew that life expectancy for people with it isn't great. And every time I read such things I knew that Lucy had reached an age where it was a worry as to how much time we had left with her. So I'd try to immediately put it out of my mind because I didn't want to think about a world without Lucy in it.<br />
<br />
I considered sending a text to Lucy's phone, figuring her possessions are now in the hands of her family, to send them my condolences. But concluded that would be weird so didn't do it. I've only met her dad once and not any other members of her family.<br />
<br />
I shall miss her greatly. She was a wonderful woman with a fantastic sense of humour. Every time I hear any mention of Game of Thrones and shall think of her and her adoration of the show.<br />
Lisahttp://www.blogger.com/profile/16714918894319998184noreply@blogger.com2tag:blogger.com,1999:blog-6233625.post-11268186758125889112015-01-04T23:09:00.000+00:002015-01-04T23:09:03.571+00:00Pics or it didn't happenToday I coughed, and then I screamed in pain.<br />
<br />
It's now 9 days since I <a href=http://lisybabe.blogspot.co.uk/2014/12/accidents.html target=new>wrecked my shoulder</a>.<br />
<br />
I did it on Boxing Day. On the 27th I managed to escape from the arse-end of nowhere and get back to London so I could go to my local A&E. It really wasn't much better.<br />
<br />
I arrived, was seen by the triage nurse, and was sent to x-ray in only a few minutes. Well, the triage nurse pulled a doctor aside and said "she's crying in pain." I wasn't really. I was crying because:<br />
<br />
<div class="separator" style="clear: both; text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEiQIIKkYaFg_2craNCZl2PvtHthHMf4r9MlLKTNLqmHQnR8CKYKQ_Tdnd7QNdZ4afG3PSGArRv864nkCLXulO5cFCkh9zUbOqWPZ0fqsj4I_PXoda6tPJa4Ep3M65TYACao8M-aog/s1600/pieChart_jpg.jpeg" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEiQIIKkYaFg_2craNCZl2PvtHthHMf4r9MlLKTNLqmHQnR8CKYKQ_Tdnd7QNdZ4afG3PSGArRv864nkCLXulO5cFCkh9zUbOqWPZ0fqsj4I_PXoda6tPJa4Ep3M65TYACao8M-aog/s320/pieChart_jpg.jpeg" alt="A pie chart entitled 'why I was crying'. There is a dark blue slice taking up 5% titled 'pain'. Then there's an aqua-coloured slice accounting for 25% of the pie entitled 'sadness about being treated so badly the night before'. Then there's a purple slice accounting for the remaining 70% of the pie labelled 'fear of being treated so badly again'."/></a></div><br />
But I didn't bother to shout after her and correct her.<br />
<br />
I initially stopped by the seats outside x-ray, and continued facing the direction I was facing anyway. But I became aware of the flow of air as people walked close to my shoulder and turned around so my good shoulder was facing outwards before someone knocked it.<br />
<br />
I had 3 x-rays taken this time. I heard a voice bellow along the corridor "it isn't dislocated" and knew they were talking about me. (I never, for a second, thought it was dislocated.) I was then swiftly downgraded from A&E to the Urgent Treatment Centre. <br />
<br />
I really wasn't sat there very long before I got called in by a doctor. I once again told the story of what happened, "no, I didn't fall over," blah, blah. You know all that from my last post. The doctor looked at my x-ray, came back and told me that he couldn't see any fractures. And proceeded to treat me like I had a small bruise. Unlike my dad's local A&E they were polite about it, but still didn't care. "Urgent treatment centre" is a bit of a misnomer if all they do is pull you aside for a "there's nothing wrong with you" talk.<br />
<br />
Well, they gave me a prescription for some 30/500 co-codamol and offered me a sling.<br />
<br />
I'd already explained to him that osteogenesis imperfecta most famously affects bones, but actually it affects every single tissue in the body containing type 1 collagen. Which is every tissue in the body. Tendons, ligaments, muscles, blood vessels, even skin. All affected. But as I said in my last post; doctors think if you've got OI and not broken a bone, there can't actually be anything wrong with you at all. Explained it to him, all of it.<br />
<br />
He said that if I couldn't manage at home, they could admit me until I got some social care.<br />
<br />
<i>"If you admit me, will that get me an MRI and a diagnosis?"<br />
<br />
"An MRI wouldn't show us any more detail than we can see on the x-ray."<br />
<br />
"You can't see soft tissue on an x-ray."</i><br />
<br />
Even when you waste your breath explaining that OI doesn't just affect bones (something they should have learned in medical school), they still don't listen.<br />
<br />
<i>"Well, no, we wouldn't. We'd literally just keep you here until you got some social care."<br />
<br />
"Right, I'm going home then."</i><br />
<br />
Every time break my toes I'd be eligible for medical care, but I don't bother wasting my time or their money because I can strap it up myself and it's not like they're particularly painful unless you try wearing shoes.<br />
<br />
When I actually needed medical care and asked for it, I was treated like I had a bit of a cramp.<br />
<br />
When I snapped a rib gardening I didn't need to call an ambulance. I packed up my gardening supplies, came inside, took painkillers, waited for them to work, then cooked my dinner. The next day I went shopping, which entailed lifting my wheelchair in and out of my car. Didn't need medical care, even though I'd have been eligible for it.<br />
<br />
I haven't left my flat since I got home from the hospital that night because I can't drive my car or push my wheelchair. I can only prepare foods that can be made one-handed. But I'm not eligible for medical care because it doesn't show up on an x-ray. <br />
<br />
When I fracture the little bones in my hands and feet (which I usually do a couple of times a year) I usually just say "fuck", tape it up, and carry on with what I was doing.<br />
<br />
When I got home from the hospital on the 27th I tried moving my arm to put talc in my armpit and screamed so loud I woke my hard-of-hearing upstairs neighbour. But I'm "lucky" to have "just a soft tissue injury" according to medical "professionals". <br />
<br />
I wish I'd got the memo where it was decided by the NHS that policy is "pics or it didn't happen." Which is really what's going on here. If it can't be seen on an x-ray, it's not real. Or at the very worst it's just a small bruise.<br />
<br />
Even if you can't move your arm.<br />
Even if you can't drive your car.<br />
Even if you can't push your wheelchair.<br />
Even if you can't wipe your arse with your dominant hand.<br />
Even if you scream at the pain in your shoulder when you cough. When a broken rib didn't make you scream like that upon coughing.<br />
<br />
Pics or it didn't happen.<br />
<br />
I had really wanted to go and see <a href=http://www.nevillesisland.co.uk/ target=new>Neville's Island</a> during it's final week. An organisation that owed me an apology were going to buy me tickets too. Cracking cast: Adrian Edmondson, Neil Morrissey, Robert Webb and Miles Jupp.<br />
<br />
Couldn't go. Obviously. Like I said; I haven't left the house since I came home from the hospital. I'll remind you that after breaking a rib I got myself to Westfield the next day. Went to <a href=http://www.frightfest.co.uk/ target=new>FrightFest</a> about 10 days later, and even managed to cram my broken rib into a bra for that outing.<br />
<br />
I was really upset about not being able to go. But "luckily" there's nothing wrong with my shoulder right now.<br />
<br />
While 2 A&E departments were collectively as helpful as a shit in a sock, I've had wonderful friends come to my rescue. I especially have to say thanks to Liz & Jo who:<br />
<br />
* Arranged for someone to drive my car back to London from Hell.<br />
* Came and rescued me from my local hospital (<i>and</i> gave me a bag of Christmas presents while doing it).<br />
* And Jo went back to the hospital the following day during pharmacy opening hours to get the co-codamol that the "urgent treatment centre" prescribed.<br />
<br />
I would literally still be crying in Clacton if it weren't for them.<br />
<br />
I often go months without seeing anyone. But my friends have been great these last 9 days. Someone else came by to grate some cheese for me to make one-handed cooking a bit easier. (<a href=http://www.lactofree.co.uk/ target=new>Lactofree</a> don't sell pre-grated cheese.) Another friend is swinging by tomorrow to throw some rubbish out for me.<br />
<br />
Now, if you'll excuse me. I'm going to go and have a bath. It takes me nearly 2 fucking hours to get dressed again afterwards.Lisahttp://www.blogger.com/profile/16714918894319998184noreply@blogger.com0tag:blogger.com,1999:blog-6233625.post-18212358388939999042014-12-27T09:30:00.000+00:002014-12-28T16:02:28.498+00:00AccidentsUntil last night I hadn't been in an ambulance since I was 8 years old and I shattered my ankle in school. <br />
<br />
I'm pretty adept at dealing with injuries myself. I usually strap up my own fractures, my dislocations usually spontaneously reduce (the thing about joints that dislocate easily is that they pop back in easily too). I'm generally used to pain and injuries without seeking medical help.<br />
<br />
But last night I had no choice.<br />
<br />
My father was eating dinner and he aspirated a sausage. I slapped him on the back and hurt my shoulder. He coughed up the sausage all on his own while I was talking to the 999 operator. I said "oh, he's coughed up a piece of meat the size of a finger. But I still need that ambulance for my shoulder."<br />
<br />
The paramedics were lovely. Well, at first they couldn't give a fuck while I was standing in front of them saying "I've got osteogenesis imperfecta and I think I've broken my shoulder." It eventually transpired that the 999 operator hadn't updated them, even though I'd told her quite clearly what had happened. So they arrived looking for an "81 year old choking victim." (I'd also told the 999 operator clearly that he's 80.) So given that they were looking for someone who couldn't breathe, my shoulder didn't matter at all. But once they ascertained that my father was breathing and I was now the patient; they were lovely and offered me perfect medical care.<br />
<br />
The loveliness ended once I got to the hospital.<br />
<br />
Well, not the second I arrived at the hospital. For a while I remained in the company of the paramedics because there were no hospital staff around. They hooked me up with more entonox because the one in the van crapped out. Even the paramedic admitted that it wasn't supposed to be making that noise. A friend of mine broke her toe recently and posted a gas & air selfie on Facebook. I decided I might as well join in for something to do while waiting for hospital staff to appear.<br />
<br />
<div class="separator" style="clear: both; text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEguvhDy4LuIwRrOZbl7xVz2nLBzLaERgB9WWy-AlQqxFok-4F3pX-x7aRRyWZL-W5AnX09eKxGQMi8ntpj8rzuV0GyEO0xEgKuc87UXSth9-0o1UYmnyW3XmAH1OouqC3zzsFJDuA/s1600/IMG_1178.JPG" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEguvhDy4LuIwRrOZbl7xVz2nLBzLaERgB9WWy-AlQqxFok-4F3pX-x7aRRyWZL-W5AnX09eKxGQMi8ntpj8rzuV0GyEO0xEgKuc87UXSth9-0o1UYmnyW3XmAH1OouqC3zzsFJDuA/s320/IMG_1178.JPG" alt="Me wearing a purple T-shirt and a sling supporting my left arm. My hair is really frizzy from the rain and I'm not wearing my glasses. Behind me is a white wall, above me is a white ceiling, to my left is a white door. I am sucking on a blue gas and air nozzle. It is the most unflattering photo of me ever taken because I look like I have the biggest double chin in the history of the world." /></a></div><br />
Eventually a nurse did show up. She was mean. She didn't actually use any unacceptable language, but from her facial expression and tone of voice you could tell that she thought I was the scum of the earth. She loathed me before I'd even said a word. At first I figured "well, it's Boxing Day. I'd be in a bad mood if I had to work too."<br />
<br />
Except she was perfectly convivial to the doctors, the porter, the female paramedic. She gave the male paramedic a flirty wink and a grin. The unsuppressed contempt was for me and me only. Before I'd even said a word.<br />
<br />
Obviously, during the handover, the paramedic mentioned that I'd had a dose of oramorph in the ambulance. The fact that I have multiple medical conditions that require morphine should not make a nurse hate a patient. If you're a nurse who doesn't like people who take prescription medications, you're in the wrong job. The drugs were clearly mine, the label explicitly stated that they were prescribed to me, I wasn't illegally abusing drugs. But you know what? Even if I had no painful medical conditions and I was a junkie who had no physical need for strong painkillers: I would still deserve to be treated with politeness by medical staff. Rudeness wouldn't make my shoulder magically better.<br />
<br />
She can't even claim "I thought she was just a drug seeker" as a defence for her behaviour seeing as how I'd brought my own fucking drugs with me.<br />
<br />
But I suspect she'd have hated me anyway. The painkillers I take were just fuel on her bitter little fire.<br />
<br />
Her and the doctor who'd come along both begrudgingly agreed that they should probably take an x-ray to be on the safe side. It was quite clear that their assumption was that I had no injuries whatsoever, and they were just humouring me before kicking me out. I guess they were thinking "we'd better give her a zap of radiation so she can't write a complaint that we didn't even bother to x-ray her." Rather than the professional "lets order this essential medical test and carefully scrutinise the results, ordering more tests if it doesn't give us a clear answer as to the nature of her injury."<br />
<br />
<i>I feel I need to make clear at this point: I haven't named the hospital publicly, and I will not be doing so until the complaint has been processed. If you happen to know the name of the hospital I went to from my "friends only" Facebook post, please keep it quiet until the complaint has been followed through. I trusted you to share that information with you. Please respect that trust by not making the information public.</i><br />
<br />
So I went for an x-ray. Like the paramedics, the radiologist was lovely. Well, one of them was lovely, conversational and warm. The other one didn't really say much to me at all, but at least she didn't express pure contempt like the nurse, or an assumption that there was nothing wrong with me, like the doctor did.<br />
<br />
They took x-rays from 2 angles. If you've got a clearly displaced break, it's usually pretty obvious from most angles. If you've got a small fracture that doesn't go right through, you have to x-ray from exactly the correct angle in order to be able to see it.<br />
<br />
The last time I went to A&E was because I genuinely didn't know if I'd fractured my rib or not. They took one x-ray and declared my rib to be fine. The next day I found out that there definitely was a fracture there when I bent down while gardening and that little fracture went right through and became a proper break. I didn't only feel it snap, I heard it snap too. I packed up my gardening gear, came inside, took some painkillers, watched <i>The Great British Bake Off</i>, then cooked myself some dinner. There was no point going back to hospital. I'd only gone the day before because I wanted an answer. Once the little fracture had turned into a clear break, I had my answer; no need to go back. They don't do anything for ribs unless it punctures your lung.<br />
<br />
Once I crush fractured a couple of vertebrae. At the time the radiologist declared that there was nothing wrong. A decade later my x-rays were looked at by an expert in osteogenesis and he immediately said "you've done something here..."<br />
<br />
"I knew it!" I replied.<br />
<br />
I could go on, I have loads more examples. But the point I'm trying to make is that doctors often miss fractures on OI bones because our bones really aren't that opaque on x-rays. These experiences aren't exclusive to me; I don't think I know a single person with OI who hasn't had fractures missed that have ultimately turned out to be very real.<br />
<br />
Once when I was a pre-schooler I didn't have just a little fracture, I had a proper displaced break go unnoticed by a doctor who just wasn't doing his job. My mum took me back to A&E again the next day because I still wouldn't move my arm: I was treated by a doctor who could be bothered to actually look at an x-ray, and was diagnosed.<br />
<br />
The doctor I encountered last night took a quick glance at my x-ray, declared "no fractures. You're lucky. It's just a soft tissue injury. Goodbye."<br />
<br />
I can't move my fucking arm at all, but I'm lucky? Even if it transpires that it is "just a soft tissue injury," that doesn't mean it isn't serious. Nasty soft tissue injuries can be more painful than fractures and take longer to heal than fractures. If they heal at all. Soft tissue injuries can require surgery. Soft tissue injuries do not show up on x-rays.<br />
<br />
There's a common belief among doctors that there's only one type of injury that people with OI can sustain, and that's fractures. I've even met "experts" in OI who've fallen into that trap. The reality is that OI most famously affects bones. But it also affects tendons, ligaments, blood vessels, skin... In fact it affects every tissue in the human body. While many doctors seem to believe that OI is an immunity against all other injuries; the reality is that OI makes us more vulnerable to tearing tendons, etc.<br />
<br />
Oh how I wish I was at home in London right now. The first time I went to my local A&E, the doctor I met was meticulous. The radiologist said he couldn't see anything wrong with my x-ray. But when the doctor reviewed it she noticed a random speck of bone floating around in my foot. It was about a millimetre long and about the width of a hair. But she studied and studied my x-ray until she spotted it. She couldn't explain it, that took an orthopod. But she noticed it and realised it might be relevant.<br />
<br />
It turned out that I'd torn a tendon out of the bone. The tendon that's responsible for rotating your foot inwards like the movement involved in moving your foot from the accelerator to the brake while driving. That tiny speck of bone was a little chip of bone that had been pulled off when the tendon came out.<br />
<br />
I wish I'd encountered a doctor with her diligence last night. <br />
<br />
Usually when I tell people about that injury, they start wincing. But, actually, while painful, I could still walk on it. Well, the small amount I can walk anyway. In fact I could still move it for the first 2 months after the pain started until my foot eventually decided "nope, not moving any more." It was my inability to move it that made me finally give in and go to the hospital, not pain. Sure, it was painful, but within the realms of my pain tolerance. It wasn't pain preventing my foot from moving, it just wouldn't budge.<br />
<br />
This shoulder? So not within my pain tolerance. And the reason I can't move it is because of pain. I can break a rib one evening and then lift my wheelchair in and out of the boot of my car the following day. For me to be unable to move something at all because of pain... Well, that hasn't happened since I snapped my humerus aged 9.<br />
<br />
After I'd been kicked out of hospital, I again encountered human decency. When I got in the cab I failed at my first attempt to do up my seatbelt. My left hand is dominant and I was trying to do up a seatbelt on my left hand side with my right, non-dominant hand. (Because if I sat in the back seat with a right hand side fastener, that would have meant the belt going over my left shoulder.) He offered to help me, but I managed it on the second try.<br />
<br />
I involuntarily gasped with every bump in the road we went over. He sounded like he felt so guilty for inflicting pain on me. Unlike in the ambulance, I didn't have entonox to suck on (well, until it gave up towards the end of the ambulance ride, anyway). I wound up feeling sorry for him because he knew he was causing me pain, felt guilty about it, but couldn't help it.<br />
<br />
And now there's my poor cat. She keeps trying to affectionately head bump my arm. I can't explain to her "please express affection towards any part of my body except that arm." So I have to just keep pushing her away and she looks ever so upset. She could give <a href=https://twitter.com/mysadcat target=new>@mysadcat</a> a run for his money.<br />
<br />
As for my dad and his sausage? That's twice I've visited him in a row where he's inhaled food. If me refusing to come visit until he sees a doctor to discuss his aspiration issues is what it takes to make him see a doctor about his aspiration issues; then that's what I have to do before he kills himself on a KitKat. If I don't threaten such measures, he'll just carry on like this until his death certificate reads "cause of death: Steak and kidney pie."<br />
<br />
But for now I'm dealing with the worst injury I've had in more than 25 years, and have had no medical treatment for it whatsoever.Lisahttp://www.blogger.com/profile/16714918894319998184noreply@blogger.com1tag:blogger.com,1999:blog-6233625.post-51997212548857021012014-12-08T17:14:00.000+00:002015-12-27T23:53:12.489+00:00DeathI've lost 2 friends in the past couple of weeks. First there was <a href=http://www.khccc.com/passing-of-our-friend-tracey-byrne/ target=new>Tracey</a>, and then <a href=http://www.abc.net.au/news/2014-12-08/stella-young-dies-aged-32-writer-comedian-disability-activist/5950640 target=new>Stella</a> this weekend.<br />
<br />
I knew Stella long before she was famous. Before she was a comedian. Before she was a writer. When she was someone who hung about on disability messageboards like the (now closed) BBC Ouch boards. In fact, years before she started doing stand up she said to me "I plan to come to England one day and seeing you perform is one of the things I want to do."<br />
<br />
Though I knew her for a decade online, I've actually only met her twice; and they were both while she was here covering the Paralympics 2 years ago for the Aussie press. First at a protest outside Atos's HQ, then at a rugby match. She never saw me do stand up, I had to quit due to illness in 2007. Five years before she came over here.<br />
<br />
<div class="separator" style="clear: both; text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgaWJ3fIEkSV2N0aRFJcs-ADclQHl4XZd28W2KEvlf4pDH5aRL_8mZdmZdsTQhETIZ2xQc3uCh-ixnhtsbZLs7Kr5mNHVDqw6Wsllxn-GSnyWx6Nlkx_x97fwUjLByb0_qwf4ZH2Q/s1600/IMG_0743.JPG" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgaWJ3fIEkSV2N0aRFJcs-ADclQHl4XZd28W2KEvlf4pDH5aRL_8mZdmZdsTQhETIZ2xQc3uCh-ixnhtsbZLs7Kr5mNHVDqw6Wsllxn-GSnyWx6Nlkx_x97fwUjLByb0_qwf4ZH2Q/s320/IMG_0743.JPG" alt="Picture of 4 people. The back row is a non-disabled woman and a non-disabled man perched on a railing. The front row is 2 women in wheelchairs. In the background wheelchair rugby players are on the court warming up."/></a></div><center><a href=http://felicityward.com/ target=new>Felicity Ward</a>, <a href=http://www.tiernandouieb.co.uk/ target=new>Tiernan Douieb</a>, Stella and me</center><br />
One of the first things I noticed about Stella when I met her was that she sits on the front edge of her wheelchair seat, and sticks everything like her phone in the space behind her - between her butt and her wheelchair's backrest. I noticed because my mum did exactly the same thing: Her handbag, usually a tape measure, and all other kinds of junk were stuffed between mum's back, and the backrest of her chair. Even me when I was small enough to fit. On Saturday it'll be the 6th anniversary of my mum's death.<br />
<br />
Tracey's death was sad, but not surprising. When I first met her 20 years ago she'd already lost a younger sister to the same condition she had. I knew she wasn't going to be around forever. Stella's death was an utter shock. I read about it on Twitter on my phone and my hands started shaking. She seemed so vibrant and healthy. Just a couple of weeks ago she wrote a letter to <a href=http://www.bendigoadvertiser.com.au/story/2715290/stella-youngs-letter-to-herself-at-80-years-old/?cs=36 target=new>her future self</a>.<br />
<br />
When people with OI die; everyone breaks out the snowflakes. It's become a motif. Stella hated it. When a mutual Facebook friend of ours died in October; Stella posted the following <a href=https://www.facebook.com/stella.young/posts/10152437505993036?pnref=story target=new>status update</a>:<br />
<br />
<blockquote>This weekend a young woman with OI that I only knew from Facebook died. I was really sad to hear it. I didn't know her well at all, but she seemed like an interesting person and someone who was highly regarded in the OI and LGBT community.<br />
<br />
Within hours, my facebook feed was flooded with pictures of snowflakes. And poems about snowflakes. And analogies about snowflakes melting as a symbol of death. Apparently at some point a parent of a kid with OI decided that their kid was like a snowflake. Presumably because having Osteogenesis Imperfecta make you small, fragile, delicate, unique, blah, blah, blah. Whatever. Call your own child whatever nickname floats your boat. They may grow up loving it, or they may grow up rolling their eyes. Who knows. But this snowflake business seems to have caught on in the OI community and it makes me pretty uncomfortable.<br />
<br />
I understand why it may resonate with some people, and having a symbol like that can be comforting when you lose someone from a community you feel a part of. It does remind us of our own mortality. And I know there's no real harm in just letting people have their thing.<br />
<br />
But in case I get hit by a bus tomorrow, I want to make something clear.<br />
<br />
I am not a snowflake. I am not a sweet, infantilising symbol of the fragility of life. I am a strong, fierce, flawed adult woman. I plan to remain that way in life, and in death.</blockquote><br />
The second I read about her death I remembered she'd written that and had to dig out that status from 2 months ago and share it on Twitter and Facebook before everyone started changing their userpics to snowflakes.<br />
<br />
And people have respected her wishes. I haven't seen a single snowflake.<br />
<br />
But BuzzFeed are dicks.<br />
<br />
In 2012, <a href=http://www.abc.net.au/rampup/articles/2012/03/27/3464847.htm target=new>Stella wrote this</a>:<br />
<br />
<blockquote>It doesn't matter how we got like this. Really. Are you asking because you want to know or because you need to?</blockquote><br />
So I can just imagine how she'd feel about an article <a href=https://twitter.com/braddybb target=new>Brad Esposito</a> wrote. I'm not going to link to it, I don't want to reward their clickbait with clicks. But here are snippets in the context of a review.<br />
<br />
<div class="separator" style="clear: both; text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhxGfdAupqudlhG2f5xoTcZW4CON_AEg7hU88bjJAv0DOqHjmejDgGyNvAgCcQYuWQIRx1JTYYNIHTK-xvvCa-mLSZstWLaGPD1aembFvXkKF2AU1He9mXVGAFw9EaXOdoIQOfWJg/s1600/Title.jpg" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhxGfdAupqudlhG2f5xoTcZW4CON_AEg7hU88bjJAv0DOqHjmejDgGyNvAgCcQYuWQIRx1JTYYNIHTK-xvvCa-mLSZstWLaGPD1aembFvXkKF2AU1He9mXVGAFw9EaXOdoIQOfWJg/s320/Title.jpg" alt="In large font it says '8 Things You Might Not Know About Osteogenesis Imperfecta.' Then in smaller font it says 'Following the tragic death of Stella Young, here are eight things that many of us don’t know about the genetic disorder.'"/></a></div><br />
<div class="separator" style="clear: both; text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjJkx6kSe4a0cauVpBmn-KssTnjaBPooi7XMJ9Zw5XpmmkXV56QbsxCRjBlqe5w2w1xkl4RtJMGY1aSMWSgjFHjlDAGnqxXdPDXwCS-c3bKbccNYji4mAfiusu25xekaJxICp_6_A/s1600/1+genetic+brittle+bones.jpg" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjJkx6kSe4a0cauVpBmn-KssTnjaBPooi7XMJ9Zw5XpmmkXV56QbsxCRjBlqe5w2w1xkl4RtJMGY1aSMWSgjFHjlDAGnqxXdPDXwCS-c3bKbccNYji4mAfiusu25xekaJxICp_6_A/s320/1+genetic+brittle+bones.jpg"alt="the text '1. Osteogenesis Imperfecta is a genetic disorder, causing bones to break easily.' followed by 2 x-rays of the legs of a person with type III OI." /></a></div><br />
These are almost certainly not Stella's x-ray's. They'll just be random ones found from a google image search. But for fuck's sake; you can make out the genitalia of the people involved even if they are anonymous.<br />
<br />
<div class="separator" style="clear: both; text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjjEdPaJcevR36UwyYD2Q-ub1O7W8931UNrXm3j76WuMhsIEGTE-D7aAGq-yfJB9uRAIBtmo5bhcpc_2PSgtBckMebwaxEoAPyaUXHVUioLG_S01zuSPZg2cuXWuRo24L4ZxS6yuA/s1600/5+no+cure.jpg" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjjEdPaJcevR36UwyYD2Q-ub1O7W8931UNrXm3j76WuMhsIEGTE-D7aAGq-yfJB9uRAIBtmo5bhcpc_2PSgtBckMebwaxEoAPyaUXHVUioLG_S01zuSPZg2cuXWuRo24L4ZxS6yuA/s320/5+no+cure.jpg" alt="The text '5. There is no cure.' followed by full body x-rays of a 38 year old woman with type I, a 63 year old woman with type I, a 40 year old man with type IV, a 35 year old woman with type IV, a 27 year old woman with type III, and a 40 year old man with type III."/></a></div><br />
I'm disgusted that someone would use a person's death for an excuse to break out the x-rays to give the public a good gawp at what our freaky skeletons look like. As Stella had discussed; the public want to know, they don't <i>need</i> to know. A disabled person's medical history, such as x-ray's of what someone will have vaguely looked like under the skin, are not in the public interest. The name of her condition, sure. Her cause of death if that comes to light, yes. But anatomical images of her insides? No.<br />
<br />
Stella was fortunate that she'd made her wishes about snowflakes clear before she died so wasn't subjected to them. I know I'm not going to be memorialised in the same way: I'm not famous, I'm not popular, I'm just benefit scrounging scum. I won't be <a href=https://twitter.com/JuliaGillard/status/541759688040132608 target=new>remembered by former Prime Ministers</a>, news outlets won't write articles about me. I'll be lucky if more than 5 people show up to my funeral and 3 people write blog posts about me.<br />
<br />
But I feel I need to make the following quite clear:<br />
<br />
<ul><li>No snowflakes either. I'm not small and delicate. I weigh 75kg: You would not want a snowflake my size landing on you. I'd crush you and the imprint left in the snow after I'd squished you would not look like the traditional snow angel.</li>
<li>No bullshit clickbait fetishising my deformed bones. My innards are my innards. Porn is about seeing the normally unseeable, like getting a good view up someone's cunt. When I was doing my MA in Cult TV I read <i>CSI</i> described as "the porn of death" because with the autopsies, and "the CSI shot" where you get to see a bullet smashing it's way through someone's chest, that's about seeing the normally unseeable too. This kind of article is basically impairment porn: Where you get a have a bloody good look at all someone's unusual bits, both inside and out.</li>
<li>Do not use the word "RIP" in reference to me. Seriously. If you care that I'm gone you can either type the three whole words "rest in peace" or just not bother.</li>
<li>Can someone please play <i>Raise Your Glass</i> by P!nk at my funeral. I may be wrong, but it's in all the right ways.</li>
</ul><br />
If someone does write that kind of impairment gawp fodder about me, please direct them to this post. These next 5 words are for them:<br />
<br />
<i>Fuck you, you creepy arsehole.</i><br />
<br />
In the same article as "It doesn't matter how we got like this. Really. Are you asking because you want to know or because you need to?" She carried on that paragraph with:<br />
<br />
<blockquote>If you're just sitting next to one of us on the train, or taking our order at a cafe, you don't actually need to know. If we've actually met and had a conversation beyond "Do you want honey with your chai?" then perhaps it gets a little more relevant. It might come up in conversation, and when it does, we'll be happy to tell you. It's just not a very good opening line.</blockquote><br />
<a href=http://web.archive.org/web/20150716044757/http://blogs.independent.co.uk/2012/08/31/paralympics-some-are-only-watching-to-get-the-gory-details-of-how-athletes-acquired-their-impairments/ target=new>TV</a> and articles like that one by BuzzFeed just feed into the public notion that a disabled person's medical history is public property that absolute strangers feel they have a right to demand from you. As well as the examples Stella listed, I've been asked by strangers on the bus if I have phantom limb pain, despite the fact that I've had nothing amputated. I once had a woman on the High Street ask what happened to me... and then carry on walking without waiting to hear my answer (which would have been expletives, obviously). She just asked and carried on walking like "did you have an accident?" is some kind of cripple's alternative to the nod and "alright?" that you generally offer when you acknowledge someone's presence in the street.<br />
<br />
I was sad when I woke up this morning. But now I'm angry. Angry that Buzzfeed would exploit the death of a popular comedian and activist to get people to click and stare at what her skeleton looked roughly like. Despite it being the kind of thing she publicly railed against.Lisahttp://www.blogger.com/profile/16714918894319998184noreply@blogger.com3tag:blogger.com,1999:blog-6233625.post-54690974526425836532014-09-12T14:03:00.000+01:002014-09-12T14:03:17.095+01:00The International Paralympic Committee are a disgrace<a href=http://www.bbc.co.uk/news/world-africa-29149581 target=new>Oscar Pistorius has been found guilty of the culpable homicide [manslaughter] of his girlfriend Reeva Steenkamp</a>. The International Paralympic Committee's response?<br />
<br />
<blockquote>"... if he wishes to resume his athletics career then we wouldn’t step in his way – we would allow him to compete again in the future.”</blockquote><small><p align="right">Source <a href=http://www.theguardian.com/sport/2014/sep/12/oscar-pistorius-would-allowed-return-paralympic-sport-ipc-reeva-steenkamp?CMP=twt_gu target=new>The Guardian</a></p></small><br />
<br />
That's right. Kill your girlfriend and once your trial's over you'll get a fuzzy welcome back hug. Notice how Craig Spence from the IPC didn't even have the decency to use Reeva Steenkamp's name; the woman whose life was stolen by Pistorius? She doesn't matter because according to some other man at the IPC; Pistorius was a “fundamental ambassador” for London 2012.<br />
<br />
There's this assumption that oppressed groups would be sympathetic to other oppressed groups. Given that disabled people like <a href=http://www.theguardian.com/uk/2009/sep/28/pilkington-inquest-victim-hardwick target=new>Francecca Hardwick</a>, <a href=http://www.bbc.co.uk/news/uk-england-london-27122410 target=new>Olivia, Ben & Max Clarence</a>, <a href=http://en.wikipedia.org/wiki/Murder_of_Alex_Spourdalakis target=new>Alex Spourdalakis</a>, and <a href=http://www.dailymail.co.uk/news/article-2612760/Mother-overdosed-smothered-wheelchair-bound-daughter-12-suffering-rare-genetic-disorder-ending-life-murder-suicide.html target=new>Caitlin Wentzel</a> are routinely killed for being disabled, you'd think a body representing disabled people would have a bit of sympathy for another group of people routinely killed for existing: Women. <a href=http://www.independent.co.uk/voices/comment/remember-reeva-steenkamp-and-the-thousands-of-other-women-killed-by-men-every-year-9727469.html target=new>In South Africa in 2009 a woman was killed by her partner or former partner every 8 hours. While in Britain a woman is killed by a man every 2.36 days</a>.<br />
<br />
But, no. I would say "most oppressed groups don't care about the oppressed groups that they don't belong to;" except the International Paralympic Committee works with disabled women too! Though it's noteworthy that the IPC is chaired by a man, and both spokespeople praising Pistorius today are men.<br />
<br />
Most people would think of American Football as quite a brutal sport. Yet the governing body <a href=http://www.cbssports.com/nfl/eye-on-football/24701246/ravens-release-ray-rice target=new>the NFL have banned Ray Rice indefinitely for knocking his partner out cold in a lift</a>. Truly astonishing that they have more human decency than the IPC.<br />
<br />
The most ridiculous thing is that the IPC routinely exclude disabled people from competition for having the wrong sort of impairment. If you've got any diagnosis other than:<br />
<br />
* Cerebral palsy or a brain injury resulting in similar mobility impairment,<br />
* Spina Bifida or other spinal cord damage,<br />
* Missing limbs,<br />
* Achondroplasia (many other forms of dwarfism like osteogenesis imperfecta are deemed unacceptable to the IPC),<br />
* Visual impairment, or;<br />
* One of the very few types of learning difficulty the IPC deems acceptable.<br />
<br />
Then you will either be classified out of competition, or banned from competing entirely. If you have the wrong type of diagnosis; the IPC deem that a crime worthy of excluding you from sport. But if you <i>take a woman's life</i> you're perfectly welcome to compete.<br />
<br />
Returning to Craig Spence's statement; he unbelievably said:<br />
<br />
<blockquote>“Oscar’s done a great deal for the Paralympic movement. He’s been an inspiration to millions..."</blockquote><br />
Everything's <a href=http://www.abc.net.au/rampup/articles/2012/07/02/3537035.htm target=new>inspiring</a> when you're a cripple; from putting on your own underpants to taking someone's life. I'm sure he's inspired dozens more men to commit domestic violence now that they know they can shoot their partner repeatedly and get treated fairly lightly by a <a href=http://www.newstatesman.com/politics/2014/09/oscar-pistorius-not-guilty-murdering-reeva-steenkamp-woman-he-killed target=new>justice system geared for men</a>.<br />
<br />
For most of my adult life I've been deeply saddened that <a href=http://lisybabe.blogspot.co.uk/2011/12/im-not-sure-all-these-people-understand.html target=new>I was classified out of the Paralympics for the crime of having an impairment that the classifiers have taken a dislike to</a>. But you know what? Today I'm fucking proud that the IPC aren't speaking for me when they say that he'd be welcomed back into the fold of the Paralympic movement.Lisahttp://www.blogger.com/profile/16714918894319998184noreply@blogger.com2tag:blogger.com,1999:blog-6233625.post-67845439832779310432014-07-15T20:40:00.001+01:002014-07-15T21:47:59.860+01:00♫... Maybe I'm crazy. Maybe you're crazy. Maybe we're crazy...♫I'm angry. I wasn't 20 minutes ago. I was exhausted. 3 days of migraine will do that to your energy levels.<br />
<br />
But then I read <a href=http://www.huffingtonpost.co.uk/danny-baker/mental-health-and-relationships_b_5513500.html?&ir=UK target=new>this</a>. When newspapers publish such offensive bollocks you can always show your utter distaste by using it as toilet paper. Can't really do that with online publications. I'd say "I don't want to get shit on my computer screen," except with that article open in a browser window: There's already shit on my screen.<br />
<br />
If you can't be arsed to click the link, here's a one sentence summary: "I'd only date a disabled person if they were trying really, really, hard to not be disabled." <br />
<br />
I guess it gives him a slight moral edge over the <a href=http://www.theguardian.com/lifeandstyle/2008/oct/26/observer-sex-poll-20082 target=new>70% of the population who'd never shag a cripple under any circumstances</a>, but it's a fucking thin line.<br />
<br />
He gets bonus wankstain points for "since she's doing the right things to beat her illness, then over time, she eventually would."<br />
<br />
Some people "do the right things" and never beat their illness. Someone really should give him basic lessons in how health works. I take a fistful of meds twice a day. I don't drink, or smoke, or eat meat, or take (non-prescription) drugs. I'm a fucking angel. (OK, I swear a lot. That may not be very angelic, but <a href=http://scienceblogs.com/neurophilosophy/2009/07/13/swearing-increases-pain-tolerance/ target=new>it is good for you</a>.) All my medical conditions should have vanished years ago according to Mr Baker. Instead I can't even go for the most basic hospital tests without getting slapped with yet another diagnosis.<br />
<br />
Secondly: An ill person has no obligation to do what Baker thinks are "the right things". I've been told I should do all sorts of bollocks. Things "helpful" people have suggested include quitting prescription medication in favour of eating cherries and sticking my feet in mud to "ground" myself. Even the medical profession sometimes come out with a load of shit. I have a bone disease. My right jaw joint is crumbling. I once had a hospital appointment in which they didn't even bother to take an x-ray; they simply told me there's was nothing wrong with my jaw, it was just depression, and talking therapies would make my jaw better. Obviously I told them where to shove their group counselling cos if anything the flapping up and down would make my jaw hurt more. Eventually someone did take an x-ray of my jaw and I was vindicated. <br />
<br />
Baker said he wouldn't date someone who wasn't "doing the right things," and that it's not "stigma" but "self-preservation". I get that some people with mental health problems could be triggered by being around other people with mental health problems. That's life. <a href=http://www.cysticfibrosis.org.uk/about-cf/living-with-cystic-fibrosis/cross-infection target=new>It's no different to how people with cystic fibrosis shouldn't be around other people with cystic fibrosis because of the risk of cross-infection.</a><br />
<br />
But when your objection to dating someone with a mental health problem isn't about them triggering your symptoms; but about whether or not they're doing what you deem to be "the right thing": It's not about self-preservation, it is stigma. It is discrimination. It is a morality judgement.<br />
<br />
This whole thing about having to be A Good Disabled to be accepted is bullshit. You have to smile politely at the person that just grabbed you and dislocated your shoulder. You have to be polite when a stranger starts praying for you and not tell them in graphic detail where to shove their bible. And now, apparently, you have to read self-help books if you want to be dateable.<br />
<br />
Ultimately it all comes down to what I call "the <a href=http://en.wikipedia.org/wiki/Glen_Hoddle#Dismissal_from_England_job target=new>Glen Hoddle</a> mentality". He's really the figurehead of the notion that illness and impairment are a punishment for sinning. In this case "if you're a Good Disabled that tries hard, you'll be rewarded by your condition going away! (And as a bonus I might go out with you.) But if you're a Bad Disabled that doesn't try their best, you'll never get better. (And as an extra loss, I won't go out with you.)" If your conditions don't vanish: You are bad and you deserve everything you get.<br />
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The decision of whether or not you want to go on a date with someone should ultimately all come down to one question: "Do you fancy them? Y/N." None of this "oh, they're disabled," or "they're just not doing the right things." Although I imagine that even if I were straight I'd have a tough time getting turned on by a moralising wanker who thinks my ill health is my own fault.Lisahttp://www.blogger.com/profile/16714918894319998184noreply@blogger.com10tag:blogger.com,1999:blog-6233625.post-2721183387378264892014-03-27T10:30:00.000+00:002014-06-17T20:44:05.464+01:00♫... If you were me then you'd be screaming "someone shoot me"...♫I've been trying to write a piece about Assisted Suicide (AS) for years. I've been collating links and quotes here and there. I've written the odd paragraph that's popped into my head. I've compiled statistics, made notes on documentaries and generally tried to write a well researched, fact-based post.<br />
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Maybe I'll actually post it some day. Today I'm not using quotes from other people about why they think legalising AS is bad; today I'm writing purely about my own thoughts and experiences. The rest of this post is behind a jump due to talk of suicide and probably other triggery things too.<br />
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<b>Mental health care</b><br />
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For my next paragraph to make sense; I need to clarify some language. A lot of people think that "able-bodied" is the antonym of "disabled". It's not. "Able-bodied" is the opposite of "physically ill/impaired". There are a lot of people in this world who are perfectly able-bodied, but they are also disabled because of a learning difficulty or mental health problem. "Non-disabled" is the antonym of "disabled". <br />
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One of the main reasons I'm opposed to legalising AS is because I believe that mental health support services should be available to all. If an able-bodied person expresses a desire to kill themselves, they will receive mental health support; by force if they don't consent to treatment. I'm a big believer in equality and I don't think people with physical illnesses or impairments should receive second-class mental heath treatment.<br />
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And that's ultimately what assisting suicide is. It's saying "I'm not going to help you with your suicidal depression, have a lethal injection instead."<br />
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People think that it's only anti-choice right-wingers that oppose AS. Yup, that's me with my wacky right-wing beliefs that everybody should receive the same quality of healthcare regardless of whether they have a physical illness/impairment or not. My belief that we should not just provide healthcare, but also make it available to all, is just so right-wing.<br />
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I've thought about killing myself regularly over the last few years. I haven't actually tried it yet, but who knows what will happen as my life continues to get worse. On good days it's genuinely scary to think that, should I hit rock bottom, I'll get shoved 6 feet underground rather than offered a hand to get back up just because I have so many physical health problems that it'd be quicker to list the ones I don't have.<br />
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<b>Pain</b><br />
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Most people cite this as the reason they'd rather be shoved off this mortal coil if they had a chronic or terminal physical condition. And the shame of it is that so much pain is unnecessary because of our culture's obsession with restricting pain relief.<br />
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I've had morphine on prescription since 2009. I was first prescribed it after an operation at the end of 2008. Once I'd taken it post-op, and tolerated it well, I was allowed to have it ongoing. Prior to that operation I had begged and pleaded for pain relief for years and been told that there was nothing stronger than tramadol available.<br />
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During the 3 or 4 pre-morphine years I'd considered killing myself several times. Not because I was as depressed as I am now, but purely out of desperation to make the pain stop. And it was totally unnecessary for doctors to make me suffer given that painkillers exist. I'm not unique; most people with chronic pain conditions get denied adequate pain relief. Denial of painkillers is one of the social problems I often talk about when explaining <a href=http://www.xojane.com/issues/i-am-not-a-person-with-a-disability-i-am-a-disabled-person target=new>the social model of disability</a>. We don't allow torture in our criminal justice system, so why does our culture insist on torturing people by withholding pain relief for the crime of being ill or impaired? <br />
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There are some days when I'm in so much pain that I take so much morphine that I eventually reach the point where the side-effects become more unbearable than the pain. On days like that I really wish that marijuana was legal because it would be another arrow in my pain-killing quiver.<br />
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My point is that I understand why people would rather be dead than in so much pain because I've been there. We need to fix the medical profession's attitude to pain relief, and the legal system's attitude to marijuana, rather than dealing with the problem by killing off the people that are in pain.<br />
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<b>Money</b><br />
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This has been the thing that's really gotten me down over the last few years and really made me seriously consider ending my life. A couple of years ago I <a href=http://wheresthebenefit.blogspot.co.uk/2011/12/not-ok-triggerwarning.html target=new>blogged over at WtB about the impact welfare reform was having on my mental health</a>, and nothing has really changed in the subsequent 2 years and 3 months.<br />
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So far the only cut that's hit me is the cut to Council Tax Benefit. It cost me £65 last year which is something, luckily, that I can afford. But when I get moved from Disability Living Allowance to Personal Independence Payment there's the chance that I'll lose all help with getting around and/or help with daily living activities like cooking meals. And then I'll definitely lose help when they phase out the <a href=http://wheresthebenefit.blogspot.co.uk/2012/01/premium-life.html target=new>Severe Disability Premium</a> under Universal Credit. Luckily both PIP and UC are subject to extreme delays because the government are so incompetent, but we'll get there eventually.<br />
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You might argue that in times of austerity that disabled people should be feeling the pinch too. But the difference between me and a healthy unemployed person is that I don't have the hope of one day getting a job. A healthy unemployed person knows that when the government stops throttling the economy and there are more jobs out there, that their financial problems will probably be over. That's not the case for me. A healthy unemployed person might be looking at not being able to afford a short holiday until 2020; but I'm looking at a future where I'll never get the chance to leave this miserable island ever again.<br />
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I've always wanted to travel and it breaks my heart that I'll never get to see all the places I want to see. I've wanted to visit Australia since I was a primary school-aged <i>Neighbours</i> addict. Yes I have health problems so I'd need to bank on spending a fair chunk of my holiday time stuck in my hotel room, but I hate the fact that I'll never get the chance to look out across Melbourne from my hotel room balcony rather than just watching Ramsey Street on my TV.<br />
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It's not just us chronics that are losing financial support for the most basic things. The news is full of stories of terminals too. <a href=http://www.theguardian.com/society/2011/jul/24/atos-case-study-larry-newman target=new>Larry Newman</a> and <a href=http://www.bbc.co.uk/news/uk-northern-ireland-19433535 target=new>Cecilia Burns</a> are just two of many people who were terminally ill, but had their benefits stopped anyway. And now the Lib Dem "care" minister wants to <a href=http://www.theguardian.com/society/2014/mar/09/lib-dem-minister-norman-lamb-legalise-assisted-suicide target=new>offer AS to terminally ill people</a>. If I knew I had 6 months to live and I was going to spend that whole time worrying about money because the government had taken my income, I'd check out sooner. That's not the Lib Dems offering terminally ill people a fair choice about ending their lives; it's financially bullying people into dying prematurely by denying them enough money to stay alive. <br />
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<b>"It gets better"</b><br />
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A few years ago "it gets better" was a campaign founded in response to a spate of gay teen suicides. Of course we should be talking gay kids out of killing themselves. Of course we need to tackle homophobia to make gay teenagers feel like they belong in this world. Which is why I find it so baffling that so many of the same people think that physically ill or impaired people should curl up and die rather than being given support to live freely, happily and openly. <br />
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It might sound counter-intuitive to say "it gets better" to someone with a progressive and/or terminal condition; because clearly their condition isn't going to get better. But when you say it to a gay kid you don't mean "your gayness will become cured;" you mean that your self-acceptance will get better and you'll find yourself surrounded with less prejudiced people.<br />
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Life has the same capacity to get better for disabled people; even terminally ill ones. Disabled people are so vilified in our culture that it's not uncommon to experience prejudice and shame when first diagnosed; the same problems a teen coming out faces. So many of an ill or impaired person's problems are caused by our society, like a denial of painkillers, a lack of adequate financial support or appropriate psychological support to deal with your issues. Just like a gay teen's problems are caused by living in a homophobic - or at least heteronormative - world and not getting support or counselling to deal with that.<br />
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If a gay teenager is rejected by his homophobic parents for being gay; we rush to support him and admonish his parents. But 20 years down the line when he gets diagnosed with Parkinson's Disease and his disablist husband leaves him our society says to the husband "I understand, it must've been tough" and says to the disabled man "yeah, it totally makes sense that you'd want to die." Why does our society only offer "it gets better" support in the first scenario and not the second? There's the capacity for him to meet a new husband who isn't a disablist fuckwit, why don't we push the potential for life to get better?<br />
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Someone I know died of MS-related complications last year. She'd lived with mental health and alcohol problems most of her life. In the last few years of her life she was sober and the happiest she'd ever been, despite being at her least physically able. It really can get better even when you're dying.<br />
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<b>Isolation</b><br />
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This, along with money, has been my biggest problem in recent years in trying to find a reason to stay alive. Humans have evolved as a social species, and I rarely see other human beings in real life. Social media means my life is far better than if my body had been in this state 20 years ago, because I can have a conversation with someone on the opposite side of the world while I lay in bed with a bottle of morphine and Twitter open on my phone.<br />
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But interpersonal contact is so important, and it's so easy to get isolated when you're sick. I used to make plans to do stuff with people, but so frequently I'd have to text them on the day and say "too ill, can't make it." Eventually people stop making plans with you or inviting you to stuff.<br />
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Being isolated because you're ill is another one of those problems that doesn't need to come with being ill and is totally created by our society. I don't want people to read this, take pity on me and decide to befriend me. I don't want a woman to ask me out because she pities me. I can honestly say that I would rather die alone than be someone's pity project.<br />
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Fear of being pitied is why I hate talking about my mental health so much. I want people to view me as an equal, not someone they look down to and feel they need to look after because they see me as less than them.<br />
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That's the crux of my point really: Disabled people are seen as lesser in every way. We're so inferior that we're not worth dating. We're so inferior that we're not worth being friends with. And we're so inferior that our depression is seen as not worth treating and we'd be better off dead. Even when our depression is caused by a society treating us as less than worthy.<br />
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It's quite a neat trick actually. Deny us equality. Deny us support. Deny us friendship. Tell us constantly that we're a financial burden on the taxpayer and we're not good value for money. Then deny us mental healthcare for the depression you caused us and offer us a lethal cocktail to "end our suffering."<br />
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People say that the right to choose when and how you die is an important right. But within the current society there really is no choice. If we had a half-decent culture that treated me like a real and valuable human being then maybe I wouldn't spend so much time thinking about how my life is really not worth living. And I'm educated and politically aware enough to understand that all the sadness that's come with being ill is caused by our society. If you've just become sick I can see how it's so much easier to fight for the right to die than to fight for the right to really live.<br />
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My GP once asked me to talk to some trainee doctors about depression; seeing as how most mental health management is done by GPs rather than specialist psychiatric services.<br />
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I had to spend the time explaining how my depression is largely socially constructed. Certainly socially exacerbated. They'd never heard of the social model and how society treats us like shit. They just assumed that being miserable was a default component of having physical impairments/illnesses and had never spent a second considering that our lives don't need to be like this.<br />
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And these were trainee doctors. People who'll make life and death decisions if euthanasia is legalised. I spoke to two of them. What about all the other doctors and future doctors who'll never consider that disabled people's lives don't need to be miserable if only we got the care packages we need, got the financial support we need, got the access we need to participate equally, weren't bullied daily by a cruel world and weren't isolated by a society that thinks we're icky.<br />
Lisahttp://www.blogger.com/profile/16714918894319998184noreply@blogger.com3tag:blogger.com,1999:blog-6233625.post-33341109102963949432014-02-25T21:16:00.000+00:002014-03-06T16:58:39.677+00:00♫...What else should I be? All apologies. What else should I say? Everyone is gay...♫Both the mainstream media and the gay press have been writing vast amounts of articles over the last couple of days about <a href=http://www.theguardian.com/world/2014/feb/24/uganda-president-signs-anti-gay-laws target=new>Uganda's new homophobic law, punishing gays with up to life imprisonment for having the audacity to love</a>. Rightly so; it's an outrageous law that needs to be condemned internationally.<br />
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But there's been one remarkable fact omitted from all the write ups I've read in the pink press, and that's the disablism written into the law. <br />
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First-time offenders will be sentenced to 14 years. But people found guilty of "aggravated homosexuality" which means '<a href=http://www.theguardian.com/world/2014/feb/25/ugandan-tabloid-prints-list-top-200-homosexuals target=new>repeated gay sex between consenting adults and acts involving a minor, a disabled person or where one partner was infected with HIV</a>' will be sentenced to life. The mainstream media will write about it - that link takes you to The Guardian - but not the gay press.<br />
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(Note I said "all the write ups <i>I have read</i>". If you've seen an article in the gay press that I've missed, please post a link in the comments.)<br />
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As <a href=http://davidg-flatout.blogspot.co.uk/ target=new>David</a> pointed out in a post on my Facebook wall with regards to the law itself:<br />
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<blockquote>the Ugandan law considers gay sex with a disabled person to be equivalent to sex with a child, so it's simultaneously equating being gay with being a paedophile, and being disabled with being a child. Absolutely massive bigotry fail for the Ugandans.</blockquote><br />
I'm sure the press don't think it's worth reporting the extra sentencing for shagging a disabled person because disabled people are seen as so disgusting that the authors of the articles themselves would never dream of doing one of us. You have to remember that <a href=http://www.theguardian.com/lifeandstyle/2008/oct/26/observer-sex-poll-20082 target=new>70% of people would never have sex with a disabled person</a>, and I've never seen any evidence to suggest that gay people are less disablist. I'm sure that journalists writing for gay publications can imagine themselves going on assignment to Uganda and winding up spending 14 years in jail, but they just can't envisage hooking up with a hot crip; because they refuse to see disabled people as sexual beings.<br />
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So I'm an aggravated homosexual alright.<br />
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The weirdest thing is that it's not the gay disabled person that's going to get the increased sentence; it's their partner. The press usually suddenly give a crap about disability issues when they start to affect non-disabled people. Like how the papers didn't give a damn about disability hate crime until the death of Fiona Pilkington. But once a non-disabled person had taken her own life because of the disablist harassment her family faced; the press were all over it. Most people still call it "the Pilkington case", despite the fact that she murdered her disabled daughter Francecca Hardwick who'd been on the receiving end of the hate crime.<br />
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This isn't the first time the gay press have ignored issues where gayness and disabledness intersect. When <a href=http://www.huffingtonpost.com/2013/03/23/steven-simpson-gay-teen-burned-birthday-_n_2939092.html target=new>disabled gay teenager Steven Simpson was first killed</a>, the gay press wouldn't touch the story. That particular news story for Huff Post's Gay Voices was written when his killer was sentenced nearly a year later (and several other gay outlets did deign to report it at that point too).<br />
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The one place that reported the story at the time of Simpson's death was <a href=http://www.dailymail.co.uk/news/article-2166327/Autistic-teenager-Steven-Simpson-dies-burn-injuries-tanning-oil-prank-went-wrong.html target=new>The Daily Mail</a>. Remarkable considering they usually hate both gay people and disabled people in equal measure.<br />
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At the time I did Email a gay website drawing their attention to Simpson's death and the reply I got was:<br />
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<blockquote>I wasn't quite sure we could draw the connection clearly enough to warrant a story</blockquote><br />
Because an openly gay kid getting set on fire suddenly can't be connected to anything gay if he also has an impairment. Disability is like the ultimate gay remover. (But no-one tell Museveni that or he'll go around snapping the spines of suspected homos to sanitise the gay away.)<br />
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This same website that doesn't think that there's a gay enough connection when a gay kid gets killed is the same website that once devoted an entire article to the fact that the toilet above <a href=http://en.wikipedia.org/wiki/Ben_Bradshaw target=new>Ben Bradshaw</a>'s Parliamentary office was leaking.<br />
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It wasn't gay urine leaking from a gay toilet dripping through a gay ceiling. It wasn't a gay interest news story. Gay kids getting immolated? That's a gay interest news story.<br />
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Unsurprisingly I had a bit of a Twitter rant about this yesterday morning. And I got a reply from a gay website. At the risk of sounding like <a href=http://www.upworthy.com/ target=new>Upworthy</a>: You'll never believe what they said.<br />
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You'd think that anyone with a modicum of nous would either ignore my rant or say "you know what: We could do better." Instead the reply was a link to an article. The article was a write-up of a wheelchair user's experience of bad access at a Pride festival.<br />
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One article. One. And they expect a fucking commendation cookie for being inclusive? <br />
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As a disabled lesbian, the gay press's determined ignorance of topics where gayness meets disability is a personal matter. But I'm not some unique special snowflake. Around 18% of the population have some kind of impairment and that's going to be higher among the gay community due to <a href=http://www.nhs.uk/Livewell/LGBhealth/Pages/Mentalhealth.aspx target=new>the increased incidence of mental health problems</a> and <a href=http://www.cdc.gov/hiv/risk/gender/msm/index.html target=new>rates of HIV</a>. By sticking their heads in the sand where the two issues intersect the gay press are snubbing probably at least a fifth of their audience. The gay press is mostly an online business, and that means they need pageviews to make money from advertisers. By failing to cater to such a sizeable chunk of their prospective readership they're pissing away ad revenue. You'd think the economic benefits of including the whole gay community in their content would be enough to convince them to stop ignoring us.Lisahttp://www.blogger.com/profile/16714918894319998184noreply@blogger.com2tag:blogger.com,1999:blog-6233625.post-73678556533739345292014-01-23T11:30:00.000+00:002014-01-23T11:30:01.126+00:00♫..."But don't look back in anger" I heard you say...♫2013: What a piece of shit year that was. If I was of a superstitious inclination I'd postulate that with a "13" in the name, it was bound to be doomed. But I'm not; it was just a shit year. I mean more shit than usual that is: Life has been shit for me for a very long time.<br />
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The year started with what I thought was a brilliant idea. I was in the bath one night and I had an idea for a short horror film. The idea was accompanied by something one of my lecturers said during my MA that "the pulp is political" and it made a horror film about the cuts seem even more sensible.<br />
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To be honest, I expected daylight to come the following morning and to realise what a daft idea I'd had the night before. Instead, more ideas came. Before I knew it I had all the scenes plotted out in my head and much of the dialogue too. So I decided to type it up and ask a few producer friends if they thought it was viable.<br />
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At one point it looked like I had a producer on board and all systems were go. I got in touch with a few actors who I thought might be into it. <a href=http://www.lizcarr.co.uk/Liz_Carr/front_page.html target=new>Liz</a> was especially amazing; she put me in touch with so many people who could be involved either in front of or behind the camera.<br />
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It really looked like it might happen. Like my daft idea might come off. I was struggling a bit under the stress, but nothing too bad.<br />
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Then the project lost a producer. I don't blame them at all; I totally understand a need to pay the rent over and above a not-for-profit, anti-cuts film. I started looking for a new producer...<br />
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... And that was when I really went mental. I can quite honestly say that I have never been so close to having a full-blown breakdown. I questioned the point of my existence when I was too useless to even be able to find a film producer on at least an hourly basis.<br />
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I also hated myself for not being able to produce it myself. I don't have the skills required or the sanity to be able to do it; and that was another thing I regularly berated myself for being so useless about.<br />
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So many people had offered their skills or given their time, and I couldn't pull it off. And I was getting crazier by the day.<br />
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On Good Friday I met with <a href=http://mybagladylife.blogspot.co.uk/ target=new>Wendy</a> who'd kindly edited the script. And that was the last work I did on the film. Her handwritten notes on a print-out of the script are in a pink bag about 3 feet from where I'm sitting right now, and they're just sitting there, not typed up.<br />
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A few months later I was having a conversation with a friend about my failed foray into screenwriting. "It sounds like you need a producer to help you find a producer," was how she succinctly put the problems that had driven me round the twist.<br />
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It still seems so wasteful that there's a script ready, actors keen on the project, a fundraising strategy, etc, and it's all going to waste because of the dearth of producers out there. But I can't keep producer-hunting when there are none to be found; and making myself mental in the process. So I guess that's that.<br />
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It took a while after giving up for my sanity to be restored; I continued to question what the point of my being alive was when I couldn't pull off something so seemingly simple. In fact, it took until about the summer: And then it was my body's - rather than my brain's - turn to fail on me.<br />
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I royally fucked up my left knee....<br />
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Hang on! I'm getting ahead of myself! Before there was the knee; there was the digestive discovery.<br />
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My stomach has been fucked for years now. Worse than the acid reflux, worse than the stomach feeling like it's on fire, worse than my ability to eat being totally dependent on my stomach's whims has been the belching. I have spent the last few years feeling like I've swallowed the contents of several helium balloons. Gastroenterologists have giving me drugs to speed up my digestive transit which just forces the belches to come out as farts instead. So I quit those because, frankly, the constant belching was better.<br />
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But having a stomach perpetually full of air was horrific. It was painful because my stomach was always so distended with gas. Sometimes I even had trouble breathing because my stomach was so full of air that it impaired my lungs ability to inflate properly. Sleeping was impossible because air rises so you can't belch when you're lying down flat. I had to wake up several times a night, sit up, and beat myself on the chest until I'd expelled most of the air so I could try sleeping again for a few more hours.<br />
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In May I decided to experiment with going lactose-free. Holy fucking shit, what a relief. Yes, I miss cheese. And milk chocolate. But it's a small price to pay for the relief of not having my breathing compromised by such an inflated stomach.<br />
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But back to the knee. It was about July I think that it went wrong. I have a pretty high pain tolerance. I'll walk around on broken feet without taking painkillers. In fact I fractured a metatarsal while my knee was knackered and it totally didn't bother me. But my knee; that was a different story. It wasn't a bony injury; I could tell that. My GP sent me for an x-ray to rule out bone damage, and I was vindicated. It was something tendony, I don't know exactly what: I never got a proper diagnosis. For about 2 and a half months I needed morphine just to be able to walk to the toilet in my teeny tiny flat.<br />
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Not only did I have the drugs making me drowsy; my knee itself was also exhausting. Different types of pain and injury have different effects. Some pains will keep you awake all night with their agony; other pains will drain all your energy and make you sleep 12 hours a night. My knee fell into that latter category.<br />
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Also over the summer I had to say farewell to my beloved 5 year old netbook. Almost everything I've written that's worth reading over the last 5 years was written on that machine. It was a cheap thing I picked up in the supermarket to take into hospital with me when I had surgery in Nov 08, but it provided 5 years of loyal service. I had to replace it with this temperamental piece of shit running Windoze 8. It's slow, moody and a pain in the arse. I suppose we at least make a matching pair. Though I'm sure that one day I'll lose my patience with this and throw it out of a window.<br />
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The autumn saw a return to depressive form; although not quite as severely as earlier in the year. I had a realisation that it was October and I had absolutely nothing to show for the year that was nearly finished. I may not have the health to hold down a job, I may spend a lot of my time sitting in hospital waiting rooms. But at least in 2012 I'd done quite a lot of blogging on my "good" days. 2013 was almost over and I'd done almost nothing. I'd written a film which I couldn't find a producer for; and that was literally all I'd done. No powerful blog posts, no going to protests. There were several protests during the summer that I couldn't go to because I didn't have enough painkillers to be able to stray that far from my bed. Once again I found myself considering what the point of me being alive was when I offered no value to anything.<br />
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I really didn't help my sanity thanks to a spur of the moment decision in September: I decided to join an online dating site and paid for a month's membership.<br />
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I've tried online dating before: Everyone is disablist. As you click through profiles you realise they all say:<br />
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No crazies.<br />
No crazies.<br />
No crazies.<br />
No crazies. <br />
No strange limps.<br />
No crazies.<br />
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Obviously the spur of the moment decision to sign up didn't result in me meeting anyone. I didn't hear from even one person. But I'd paid for a month's membership so I stuck with it for the whole month; every day hating myself more and more. Partly for being so <a href=http://lisybabe.blogspot.co.uk/2011/05/somebody-tell-me-why-im-on-my-own-if.html target=new>repulsive</a>, and partly for being stupid enough to spend money on online dating knowing that all that would happen would be that I'd be reminded that everyone thinks I'm repulsive.<br />
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But back to the lack of productivity: The fact that I'd done nothing all year apart from a couple of TV and radio interviews was what made my presence on the <a href=http://www.independent.co.uk/news/people/news/the-independent-on-sundays-pink-list-2013-8876183.html target=new>2013 Pink List</a> such a shock. <a href=http://lisybabe.blogspot.co.uk/2012/11/pretty-in-pink-isnt-she.html target=new>The year before</a> it was an honour and a pleasure; but not a surprise. (I'd gotten advance notification from someone at the paper because they needed me to provide a headshot.) On my good days I'd done things that I felt proud of and I was honoured to have them recognised. Reading the Pink List again just now while getting the link to post here I sort-of expected to find 86 had gone blank because it had all been a mistake and I wasn't really supposed to be on there.<br />
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The year ended on a bacterial note. Given the frequency with which I usually get sinusitis I actually did pretty well in 2013. And I only had the infection for about 5 weeks before I got to see a GP for antibiotics. (I've had to put up with sinusitis for a couple of months before now.) Something else which sapped all my energy and left my splayed helplessly on the couch because the bacteria in my face were sucking all my <a href=http://www.butyoudontlooksick.com/wpress/articles/written-by-christine/the-spoon-theory/ target=new>spoons</a>. I literally finished the antibiotics a couple of days before Christmas. So that was that, 2013 effectively over. And all I had to show for it was a lactose-free diet and the script for a film which will probably never get made.<br />
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There are several people I owe blog posts to; promises I made months ago but haven't had the energy to write. Yet. So far 2014 has been a bit of a crazy whirlwind of hospital appointments (they started on Jan 2nd and this is the first week all year without one). But hopefully - <i>hopefully</i> - I can get all caught up in the near future.<br />
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And on the subject of hopes: Please just let 2014 be a bit better than 2013. I know my life is always going to suck. But it'd be nice if I could have a year that sucked slightly less.Lisahttp://www.blogger.com/profile/16714918894319998184noreply@blogger.com2tag:blogger.com,1999:blog-6233625.post-44145473449771461292013-10-29T20:15:00.000+00:002013-10-29T20:15:46.167+00:00Medical Complaints<a href=http://www.bbc.co.uk/news/health-24669382 target=new>This story was in the news yesterday</a> about how a "complaints revolution" is needed in the NHS. But a few years ago I came across a much bigger problem with making complaints about negligent medical care. The problem wasn't with the NHS; the problem was with our stupid legal system. I'd have come across the same problem in trying to get justice if a negligent private doctor had been responsible for my mother's death.<br />
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I've never written online before about what actually happened to my mum. I've <a href=http://lisybabe.blogspot.co.uk/2008/12/open-letter-to-my-mother.html target=new>mentioned that she had died</a> without going into the details of what happened. I've told friends off-the-record in real life, but I've never published it on the internet before because that publication could have affected any legal proceedings. But now justice is well and truly off the table, it's something I can write about.<br />
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<b>How she died</b><br />
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<div class="separator" style="clear: both; text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEiVntKtHJY5DZmOHoEsDWSFLGERLrdZwLNEKw1PAVUMs72jYM4yO6XJPubUs3U7mXYfpNvjyp_XRA_SfyVGcMEOOhIGU551DsI6v1e1UHCzvdbN6urWCcW2WFt3dy4UCG4RAr6S0A/s1600/2621_78952640468_5688441_n.jpg" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEiVntKtHJY5DZmOHoEsDWSFLGERLrdZwLNEKw1PAVUMs72jYM4yO6XJPubUs3U7mXYfpNvjyp_XRA_SfyVGcMEOOhIGU551DsI6v1e1UHCzvdbN6urWCcW2WFt3dy4UCG4RAr6S0A/s320/2621_78952640468_5688441_n.jpg" alt="Black and white photo of my mum in her wheelchair outside what was our home at the time."/></a></div><br />
The story of how my mum died actually begins 10 years and one month before her death. My mum's youngest sister was married to a bloke from mainland Europe and in November 1998 my aunt and her husband flew home from visiting his family. As soon as they landed in this country my aunt started complaining of chest pain. My aunt was overweight, a lifelong smoker and had just flown. Despite these risk factors, when she saw her GP the next day; he diagnosed her with indigestion and gave her <a href=http://www.gaviscon.co.uk/ target=new>Gaviscon</a>.<br />
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Five days later she was feeling really ill so went to get an early night. Her husband made her a cup of cocoa and took it up to her. By the time the cocoa was made and he'd carried it up the stairs; she was dead. My 85-year-old nan (who my aunt and uncle lived with) ran barefoot across the street to fetch a neighbour nurse. Said neighbour performed CPR on my aunt until the emergency services showed up, but she was gone. Unsurprisingly she'd had a massive, and instantly fatal, heart attack.<br />
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If my aunt's GP had sent her straight to A&E when she presented with chest pains 5 days earlier, it's possible she'd still be alive 15 years later. Of course she just as easily might not be; but it's possible that she would.<br />
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The reason the story of my mum's sister's death is relevant is because 10 years later, my mum died the same way thanks to the same response from a GP. Not the same GP, it's important to note: It seems the response is a standard one wherever you see a doctor.<br />
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<div class="separator" style="clear: both; text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEg32N8ZeI7Bmona3smsDEsIFQoZp4MpAemWJG14H3AEIDq8Lg_kMULqFsNy4dPyxLj2tq7jnWsWJMFNU9jztU-mJxKwjji3d9hyphenhyphenBGyfQ5FyhTn3kp46lsYrly8iW8qaow0JbIgRgA/s1600/2621_78951545468_1586514_n.jpg" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEg32N8ZeI7Bmona3smsDEsIFQoZp4MpAemWJG14H3AEIDq8Lg_kMULqFsNy4dPyxLj2tq7jnWsWJMFNU9jztU-mJxKwjji3d9hyphenhyphenBGyfQ5FyhTn3kp46lsYrly8iW8qaow0JbIgRgA/s320/2621_78951545468_1586514_n.jpg" alt="colour picture of my mum sitting on a wall wearing a flowing colourful dress." /></a></div><br />
My mum died in December 2008. Her chest pains began around two years earlier, so that would've been 2006. Just as her sister did 8 years before, my mum went to see her GP about her chest pain and was diagnosed with indigestion. Unlike her sister, my mum was prescribed <a href=http://en.wikipedia.org/wiki/Omeprazole target=new>omeprazole</a> - rather than Gaviscon - for the indigestion.<br />
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My aunt died within 5 days of the indigestion diagnosis. My mum lasted for 2 years and repeatedly visited her GP during that time. She struggled to push her wheelchair, became unable to lay down flat, and clutched her chest at the slightest movement. You have to remember that this was a woman with <a href=http://www.oif.org/site/PageServer?pagename=FastFacts target=new>osteogenesis imperfecta</a>; she had a fucking high pain tolerance. When she was in hospital as a child with broken limbs, she would still be changing nappies of babies on the children's ward and showing some love that cold-hearted nurses wouldn't. (Parents weren't allowed to visit: Hospital rules.) My mum was not someone who was easily stopped by pain, so for her to stop and clutch her chest while transferring from wheelchair to armchair; she must have been in agony.<br />
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For two years she kept going back to her GP, and her GP did nothing. No referral to a cardiologist, no cardiac tests, nothing.<br />
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On the 4th of December 2008, she went to go to bed; but couldn't get out of her armchair and into her wheelchair. She couldn't breathe. She admitted defeat and called 999. Once in hospital she was assigned a consultant cardiologist who told her, in no uncertain terms, that "you should have been referred to me two years ago."<br />
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Apparently, according to her test results, her heart attack had been massive and she was lucky to be alive. It didn't last. On December 13th at around 10pm her heart gave up and stopped completely.<br />
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A few months after mum died, the British Heart Foundation ran an ad campaign on buses with wording to the effect of "chest pain is your body's way of telling you to call 999." Such a shame they don't teach that in medical school. My mum and her sister might still be around if GPs were smart enough to know that chest pains indicate a need to rule out heart problems. Yes, you can say that my mum and her sister should've skipped the GP middle-man and gone straight to A&E themselves. But these were women with no academic qualifications who placed their faith in their GPs, expecting them to be educated enough to treat them.<br />
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<b>The legal snag</b><br />
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<div class="separator" style="clear: both; text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhHey55jyaYzMhyphenhyphenJP9TBGbIZqGvASZaRBYoejQxLi5XQi2kTETrZIxZdy6fm5X5Fukp9NA8XWzyALPF3xGq7TjvDqgSFSfe2xA8Rgzr7pwWfyJgVM3bpzXTfxSPrZrNIrcKm8IpUQ/s1600/2621_78951565468_5057021_n.jpg" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhHey55jyaYzMhyphenhyphenJP9TBGbIZqGvASZaRBYoejQxLi5XQi2kTETrZIxZdy6fm5X5Fukp9NA8XWzyALPF3xGq7TjvDqgSFSfe2xA8Rgzr7pwWfyJgVM3bpzXTfxSPrZrNIrcKm8IpUQ/s320/2621_78951565468_5057021_n.jpg" alt="My mum in her twenties holding up a pint of beer."/></a></div><br />
While mum was in hospital we had a conversation about the need for mum to sue her GP to make sure he didn't treat anyone else so badly. I remember pointing out that she was lucky to be alive and that he could have killed her. Turns out he did kill her: By the time she was hospitalised, she was beyond saving.<br />
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Shortly after her death I contacted a lawyer. Obviously I wanted justice for my mum; but what I wanted most was to protect her GP's other patients; to make sure he couldn't kill anyone else with his indifference.<br />
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I was told that I couldn't sue because I'm not legally considered my mother's closest living relative: My father is. I once lived inside my mum for 9 months. That's really fucking close. But no; the only person who could sue my mum's GP was my dad.<br />
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My dad will not do anything that involves moving from in front of the TV. Anything. For three years I kept begging him to be reasonable, to think about protecting other patients. To try to make him see that if that GP kills anyone else; their blood is on his hands because he could have stopped it.<br />
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He wouldn't. He cares more about the patients on <i><a href=http://en.wikipedia.org/wiki/Doctors_(soap_opera) target=new>Doctors</a></i> than the patients registered at my mother's doctor's surgery.<br />
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You can only instigate a case within 3 years, less one day, of realising the doctor was wrong. So the deadline for initiating legal action was Dec 3rd 2011. That's long gone, so like I said at the start: Any potential justice for my mum is long off the table.<br />
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How fucked up does a legal system have to be when a dead woman's daughter is considered too distant a relative to be able to sue the doctor whose negligence resulted in the woman's death? Yes, the NHS complaints procedure needs work and the news yesterday was full of examples as to why. It can be scary complaining, especially if you're complaining about doctors whom your life depends on. But beneath the NHS complaints framework we need a legal system that protects NHS and private patients alike. Sometimes issues are so severe (like fatal negligence) that a surgery complaint form isn't enough and you need to take legal action. We need to fix NHS complaint systems, but we need to fix our ludicrous legal system too.Lisahttp://www.blogger.com/profile/16714918894319998184noreply@blogger.com5tag:blogger.com,1999:blog-6233625.post-63005797816422238982013-09-26T11:00:00.000+01:002013-09-26T11:00:07.922+01:00The #BigBangTheory Season 6: My thoughtsSeeing as season 6 finished in the UK about a month ago, and season 7 starts in the US tonight, I can't imagine there's anyone that gives a crap about <i>The Big Bang Theory</i> that hasn't seen the sixth series in its entirety. But just in case; I'll put the rest of this post beneath a jump.<br />
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<b>The Good</b><br />
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By far the best episode of the season was <i>The Parking Spot Escalation</i>. I mean, it's hard to top a nude revenge wiggle, isn't it? <br />
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<center><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhQ2ITI_IFnT6ZZBI-_AAynRXCTCzHBA1QySccKQoolbxX-ntiyOBOPr8JhaxgN7vmPyT7pRnqZDX4IfD0-mPWNi3UH8QQmmrykA8MFMJnWmQJsHM9n4bqTLSBb1QOcbqlS7mE_PA/s1600/Nude+revenge+wiggle.jpg" imageanchor="1" ><img border="0" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhQ2ITI_IFnT6ZZBI-_AAynRXCTCzHBA1QySccKQoolbxX-ntiyOBOPr8JhaxgN7vmPyT7pRnqZDX4IfD0-mPWNi3UH8QQmmrykA8MFMJnWmQJsHM9n4bqTLSBb1QOcbqlS7mE_PA/s320/Nude+revenge+wiggle.jpg" alt="Howard sitting naked in Sheldon's spot on the couch. Howard's groin region is covered by Sheldon's laptop." /></a><br />
<i>Nude Revenge Wiggle</i></center><br />
The episode had problems with the role of the women in the story, which I'll come back to later, but the Sheldon/Howard storyline was brilliant. Aside from 2 nude revenge incidents, Sheldon sitting on his desk chair being pushed along by Howard's car was also a sight worth seeing. Have to confess that in that scene I also laughed at the ridiculousness of there being a disabled parking space and a dropped kerb right in front of a door with 3 steps.<br />
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I also think it's a plus that Leonard and Penny were together for the whole season. Yes, in sitcoms it's often on again/off again relationships that prove the funniest. But the problem with that in this show is that when he's not with Penny; Leonard has relationships with some of the dullest women to have ever been written for TV.<br />
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Sure Leonard's had brief dalliances with interesting women like Leslie Winkle and Alice (the only female comic book geek we've met in 6 years). But his multi-episode relationships other than Penny (Stephanie and Priya) have been with the least interesting women a screenwriter could possibly spew out.<br />
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<b>The Bad</b><br />
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The worst episode of the season was, without question, <i>The Spoiler Alert Segmentation</i>. I remember once seeing an interview with Jim Parsons where he said that sometimes they end up rewriting Sheldon's lines when they realise how nasty they sound. Sheldon is supposed to be socially ignorant, not cruel. But in this episode he was incredibly spiteful. And misogynist. And just not the character he's supposed to be because he displayed no redeeming features whatsoever.<br />
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It was also disappointing because it slammed a door on how I ultimately imagined the 2 relationships progressing. Leonard and Penny are going to want to move in together eventually and in my mind's eye I'd pictured Leonard moving across the hall into Penny's flat and Amy moving in to Leonard's old room. Seeing as how "in the next room" is probably the closest Sheldon would ever come to sleeping with a woman.<br />
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It was decided long ago that the audience would never see Howard's mother. And I fully agreed with that. I don't want to see her, I have my mental picture of what she looks like. But, unfortunately, for all they said that we'd never see her; the writers obviously changed their mind. Well, to an extent. In this episode we certainly saw more of her than I ever wanted to.<br />
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<center><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEg03_RzDPjGowu9YNjwVSNDLSeJgD9knz5IaM8zHbSD5gB77lJp90nIgsmhMYoiLs8X0ISKyIp1SWw44RnhjI0jKgvNHaOONdqgH9XhYDXGRWhfNQL_amd0LaAmRWfZUOG7uIApMA/s1600/Howard's+mother.jpg" imageanchor="1" ><img border="0" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEg03_RzDPjGowu9YNjwVSNDLSeJgD9knz5IaM8zHbSD5gB77lJp90nIgsmhMYoiLs8X0ISKyIp1SWw44RnhjI0jKgvNHaOONdqgH9XhYDXGRWhfNQL_amd0LaAmRWfZUOG7uIApMA/s320/Howard's+mother.jpg" alt="A screencap of Raj standing in Howard's mother's dining room. Behind him the kitchen door is open and Howard's mother is walking past. Though she is out of focus we can see that she has black curly hair and is wearing a bright pink and blue dress."/></a><br />
<i>Howard's mother behind Raj</i></center><br />
So I now know that Howard's mother is thinner than I'd pictured her and has blacker hair than I'd imagined. Thanks, writers.<br />
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Managed to be a shitty episode from every angle really.<br />
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<b>The Hair</b><br />
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Had they hired Edward Scissorhands to do the hair last season or something? I mean, look at it.<br />
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For starters; let's take Sheldon's hairdo in the first few episodes:<br />
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<center><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEiKyy8ZD71I8ftTG1xaP-Bn25mbJ40JncnwMpMBwjz89hg7dx5Sbyn0390Zj4qaZKd9LoaoC0ls5wzO_1Micl1Q9cGp6zaRSsedZ5aCE403k5Zc-JWByE9Pqf3ouE-DHFFmQ1ogrQ/s1600/Sheldon's+hitler+hair.jpg" imageanchor="1" ><img border="0" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEiKyy8ZD71I8ftTG1xaP-Bn25mbJ40JncnwMpMBwjz89hg7dx5Sbyn0390Zj4qaZKd9LoaoC0ls5wzO_1Micl1Q9cGp6zaRSsedZ5aCE403k5Zc-JWByE9Pqf3ouE-DHFFmQ1ogrQ/s320/Sheldon's+hitler+hair.jpg" alt="Screencap of Sheldon standing in the comic book store."/></a></center><br />
Look familiar? Yes, that's right: It's a mirror image of <a href=https://www.google.co.uk/search?hl=en&site=imghp&tbm=isch&source=hp&biw=1366&bih=635&q=hitler&oq=hitler&gs_l=img.3..0l10.595.1309.0.2493.6.5.0.0.0.0.407.1153.0j3j0j1j1.5.0....0...1ac.1.27.img..2.4.744.BN22hj_UuNM target=new>Hitler's hair</a>. How classy. Thank goodness they didn't give him a moustache too.<br />
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Then Leonard:<br />
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<center><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhKMv2rItiqM-bUr1TnHm33m2GI9xdqYXMCLOH_QZRuEnBKOYXAVJ9sBC1GzX1CMNTsqC7OC4YSa1VK8sP_iACaVJmPDFbPrPaSUNuA-JhB-veqghGHWpNBIsaBAt4wmcA5NLisiQ/s1600/Leonard's+S6+hair.jpg" imageanchor="1" ><img border="0" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhKMv2rItiqM-bUr1TnHm33m2GI9xdqYXMCLOH_QZRuEnBKOYXAVJ9sBC1GzX1CMNTsqC7OC4YSa1VK8sP_iACaVJmPDFbPrPaSUNuA-JhB-veqghGHWpNBIsaBAt4wmcA5NLisiQ/s320/Leonard's+S6+hair.jpg" alt="A screengrab of Leonard with his greasy-looking hair."/></a><br />
<i>Leonard's season 6 hairdo</i></center><br />
Look how greasy and creepy that is. Remember 6 years ago when Leonard's hair was just adorably nerdy?<br />
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<center><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjtWDNNBhfjsaTaGBpf3FT9bdcblv9jOOTDEMyyTyg3JTFQTiV4E4RtmhyQfQWHJXJlxP0M_46mHfpaQn1rffuIkBOhbkQa1cm4RcPDpKEBI6_LDe30n0MYCnewihK4VN6mB-Lc8A/s1600/Leonard's+S1+hair.jpg" imageanchor="1" ><img border="0" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjtWDNNBhfjsaTaGBpf3FT9bdcblv9jOOTDEMyyTyg3JTFQTiV4E4RtmhyQfQWHJXJlxP0M_46mHfpaQn1rffuIkBOhbkQa1cm4RcPDpKEBI6_LDe30n0MYCnewihK4VN6mB-Lc8A/s320/Leonard's+S1+hair.jpg" alt="A screencap of Leonard from season 1. He's in his bedroom holding a bunch of clothes on hangers."/></a><br />
<i>Leonard in </i>The Cooper-Hofstatder Polarization<i> in season 1</i></center><br />
And Penny's spent much of season 6 looking like she'd been dragged through a hedge:<br />
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<center><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjjb4mRscmIrPQxXH2p5gQSOkJKeiGbZTikDizPeqswJCiSJ9jPNC4AQo5YXJ0Tuz6kQOqe4SD5lcY7M2jz_8a-KnRNhKO5VNGn7dQLgzbLPK248a-GPzygzkPxgtWsRRtE9cQMrA/s1600/Penny's+hair+in+Habitation+Configuration.jpg" imageanchor="1" ><img border="0" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjjb4mRscmIrPQxXH2p5gQSOkJKeiGbZTikDizPeqswJCiSJ9jPNC4AQo5YXJ0Tuz6kQOqe4SD5lcY7M2jz_8a-KnRNhKO5VNGn7dQLgzbLPK248a-GPzygzkPxgtWsRRtE9cQMrA/s320/Penny's+hair+in+Habitation+Configuration.jpg" alt="Penny behind the bar at work in her bartender's uniform. Her hair looks like she's rolled out of bed, thrown it into a high ponytail, and gone in to work."/></a><br />
<i>I know I can't really talk about bad hairstyles. But even I brush mine before leaving the house. Apparently the show's hairdresser forgot that.</i></center><br />
<b>The Women</b><br />
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The show often gets criticised for its treatment of women as objects rather than fully developed and rounded characters. I think some of the criticism is unjust (yes Penny was just a pair of boobs at the start. But by then time she came out with the line "it looks like something Elton John would ride through the Everglades" she'd developed into a properly formed character).<br />
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But some of the criticism is bang on. In the past Kaley Cuoco has been the only female main actor in the show; until the start of season 6 Melissa Rauch and Mayim Bialik were recurring guest stars. But with Rauch and Bialik getting a promotion I'd hoped that we might start to see the odd scene here and there that would pass the <a href=http://en.wikipedia.org/wiki/Bechdel_test target=new>Bechdel Test</a>.<br />
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I rewatched season 6 in its entirety over the weekend. Once the ad breaks are removed, the whole season lasts 8 hours. In 8 hours, with 3 female lead characters you'd think there'd be a few scenes that could meet the criteria:<br />
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<ol><li>It has to have at least two women in it,</li>
<li>who talk to each other,</li>
<li>about something besides a man.</li>
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Guess how many scenes there were. Go on, guess. Oh, OK, I'll tell you. It was one. <i>One</i> conversation in 8 hours of TV.<br />
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And even that wasn't some radical feminist scene: They were arguing about who got to dress up as which Disney princess.<br />
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<center><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhG-DJCj_-EgGuV9O0Onx314gF9OWZ0YFSoswXDzpdM9_2GRVc73YukKLnMgoyh-_SHwIGNt3JdasmTfuK31-dm8QFN7ST5nTtMMg4VXp70OX2iw4oplZejtqz_DDDYV7L0V0853g/s1600/Talking+about+princesses+in+Contractual+Obligation.jpg" imageanchor="1" ><img border="0" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhG-DJCj_-EgGuV9O0Onx314gF9OWZ0YFSoswXDzpdM9_2GRVc73YukKLnMgoyh-_SHwIGNt3JdasmTfuK31-dm8QFN7ST5nTtMMg4VXp70OX2iw4oplZejtqz_DDDYV7L0V0853g/s320/Talking+about+princesses+in+Contractual+Obligation.jpg" alt="Penny, Amy and Bernadette in Bernadette's car. She's driving, Penny's in the front passenger seat, and Amy's in the back."/></a><br />
<i>In the car heading to Disneyland, arguing about which one gets to dress up as Cinderella.</i></center><br />
If you reclassify Thor from the comic books "a fictional comic book character" rather than as "a man" then there's another scene in which they have an argument about who can pick up Thor's hammer. Even that's a problem because the only reason they decided to read a few comic books was "gee. Our men do love comic books. Maybe we should read a few to understand what our man folk are talking about!"<br />
<br />
But other than that; every women-only scene was just them sitting around talking about their boyfriends/husband.<br />
<br />
<center><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgPXxJU9QT2nJaF-2m3p5_UglHWgYisrli2S2MXDZrFVzvg4pGxiPddcXpqLK4A3bBzgPdlMwwoO53pJhsWahCCeY_IbxhjWrN8ahpPiDCUZltwHR72YaZbYR6YOruW5HF0N4ruWA/s1600/Talking+about+men+in+Decoupling+Fluctuation.jpg" imageanchor="1" ><img border="0" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgPXxJU9QT2nJaF-2m3p5_UglHWgYisrli2S2MXDZrFVzvg4pGxiPddcXpqLK4A3bBzgPdlMwwoO53pJhsWahCCeY_IbxhjWrN8ahpPiDCUZltwHR72YaZbYR6YOruW5HF0N4ruWA/s320/Talking+about+men+in+Decoupling+Fluctuation.jpg" alt="Bernadette, Penny and Amy sitting in Bernadette's apartment, surrounded by Bernadette's wedding presents."/></a><br />
<i>Talking about their male partners. Just for a change.</i></center><br />
And this was the problem with <i>The Parking Spot Escalation</i>. Bernadette and Amy's storyline was them fighting with each other because their men were fighting. Apparently they can't think independently and have to take up their men's battles.<br />
<br />
<b>The Big Set Up, Then Disappointment</b><br />
<br />
Before this season started I read an interview that this season was ultimately supposed to be about growing up. That Penny would deal with her feelings for Leonard and that Howard would learn to live away from his mother. I was really hoping it would also include Raj coming out. And in the first episode of the season it really looked like my wish was going to come true.<br />
<br />
I'd never given any thought to who I thought Raj should go out with. I'd always assumed that if he ever came out that a new character would be written in to play his boyfriend; just like Bernadette and Amy were written in to be partners for Howard and Sheldon respectively, rather than being pre-existing characters.<br />
<br />
But then there was that scene in <i>The Date Night Variable</i>. And all of a sudden I could think of nothing but how perfect Raj and Stuart would be together.<br />
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<center><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhp2ADU89ANpQTZX_ngx3VXRSTld0nRY6duwKWjU_y1ZCaEYNHIWip-O7fLkU_SmFskpsaXEP2ZYyPFSObFhdSQV8dI6EmTXE1F69WGIzf6GnFSI573rYkVfEdWB649IOxFN7zE2Q/s1600/Raj+and+Stuart+in+The+Date+Night+Variable.jpg" imageanchor="1" ><img border="0" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhp2ADU89ANpQTZX_ngx3VXRSTld0nRY6duwKWjU_y1ZCaEYNHIWip-O7fLkU_SmFskpsaXEP2ZYyPFSObFhdSQV8dI6EmTXE1F69WGIzf6GnFSI573rYkVfEdWB649IOxFN7zE2Q/s320/Raj+and+Stuart+in+The+Date+Night+Variable.jpg" alt="Raj and Stuart in the comic book store clinking Star Wars mugs together as they enjoy a nightcap."/></a></center><br />
It was just the sweetest scene imaginable with the dancing and Raj walking away and then turning back to ask Stuart out. I was so swept away by the adoreableness of it all that I think I stopped breathing. As soon as the scene ended I rewound it to watch it again and make lots of high-pitched "squee" noises.<br />
<br />
Then I realised that Kevin Sussman, who plays Stuart, had also been added as a full-time cast member along with Rauch and Bialik. My hopes were well and truly up.<br />
<br />
But then instead of turning into a romantic relationship it just turned into yet another "ersatz homosexual marriage". Raj doesn't need another Bromance; he's already got Howard (even if Howard was in space at the time).<br />
<br />
And then came the disappointment. The series went on, Raj and Stuart never got together. Eventually Kevin Sussman was demoted from regular cast member back to recurring guest star.<br />
<br />
There was the odd little moment of closeness between them; but nothing like the sweetness we saw in that first episode of the season.<br />
<br />
In <i>The Tangible Affection Proof</i> there was another quite cute scene where Raj laid out why he and Stuart would be the perfect couple "if only [Stuart] was a girl."<br />
<br />
<center><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEiS0-QHpHgrCD7lPOEsJc8rPxsNZSN3ynG-zYKafPLYv9yY08voI6J8eLZr6Bl8Y1MOuNvU0-9veqP4LqNugjGkl6FBLm0y6p8LCjr8yhc-Hh4Rz2B_IMmxTOwC5fbwIoa7PZfKQg/s1600/Raj+and+Stuart+discuss+how+perfect+they'd+be+in+Tangible+Affection.jpg" imageanchor="1" ><img border="0" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEiS0-QHpHgrCD7lPOEsJc8rPxsNZSN3ynG-zYKafPLYv9yY08voI6J8eLZr6Bl8Y1MOuNvU0-9veqP4LqNugjGkl6FBLm0y6p8LCjr8yhc-Hh4Rz2B_IMmxTOwC5fbwIoa7PZfKQg/s320/Raj+and+Stuart+discuss+how+perfect+they'd+be+in+Tangible+Affection.jpg" alt="Screengrab of Stuart and Raj in the comic book store. Raj has his back to the camera."/></a><br />
<i>"If only you were a girl..."</i></center><br />
But by this time Sussman was already back down to a recurring guest star and at the end of the episode Raj met Lucy who he went on to have a relationship with. My heart broke a little bit at Raj dating someone that wasn't Stuart.<br />
<br />
<b>What I Want From Season 7</b><br />
<br />
Mostly for Raj and Stuart to get together. Seriously. If the writers weren't planning on doing that they shouldn't have gotten our hopes up with <i>The Date Night Variable</i>. I will not be holding my breath: I read yesterday that the actress who played Lucy has been booked to come back for at least one episode this season.Lisahttp://www.blogger.com/profile/16714918894319998184noreply@blogger.com1tag:blogger.com,1999:blog-6233625.post-48066962290479635252013-08-16T11:00:00.000+01:002013-09-26T00:02:28.921+01:00♫...It all keeps adding up, I think I'm cracking up...♫I hate talking about my mental health. I mention the fact that I am depressed when I'm listing all my medical conditions or whatever. But I only talk about it in that detached, factual way. I don't usually go into the details of the thoughts in my head. I've learned from experience that nothing loses you friends faster than freaking them out by telling them that you don't know what the point of you remaining alive is. <br />
<br />
At the weekend Giles Fraser wrote a Guardian article about how <a href=http://www.theguardian.com/commentisfree/belief/2013/aug/09/pills-unhappiness-reinforces-sad-human>we shouldn't medicate having "a shit job or a shit home life"</a>. It's all stuff I've heard before when I've answered the question "why do you take anti-depressants?" with "because my life is terrible."<br />
<br />
Would these people prefer it if I were dead rather than pathologising normal life events?<br />
<br />
I've had depression on and off since I was about 8. And it was something that happened 5 years ago that really, truly, made me understand the difference between sadness and depression.<br />
<br />
When <a href=http://lisybabe.blogspot.co.uk/2008/12/open-letter-to-my-mother.html target=new>my mum died</a> I cried for days. I was grief-stricken, heart-broken, and sadder than I've ever been in my whole life. But, interestingly, I didn't feel depressed at all.<br />
<br />
Although I've used the <a href=http://wheresthebenefit.blogspot.co.uk/2011/12/not-ok-triggerwarning.html target=new>Black Dog metaphor once before</a> because it fit what I was feeling at the time, I usually tend to think of depression as an unending night.<br />
<br />
At night you can't go to the bank, because the bank is closed. At night you can't return phone calls because businesses are closed. There's no point in opening mail in the middle of the night because you can't make any phone calls the letter might require you to make until morning. You can't do housework in the middle of the night because the hoover or washing machine will wake your neighbours. In the middle of the night you can't phone a friend and say "hey, fancy meeting up for a cuppa?" Because A) They'll have work tomorrow. And B) Unless you want petrol station dispenser tea served through the night window: There's nowhere to go for a cuppa. At night all there really is to do is stare at the ceiling.<br />
<br />
Depression to me feels like a night that never ends. Except the sun still rises and sets, the never ending darkness is inside my head. I can't go to the bank, or make a phone call, or open my mail, or do the housework, or ask a friend out for a cuppa because I feel too dark for such things. I just sit and stare at the wall.<br />
<br />
When my mum died I cried and cried. But the sun still rose and set, even in my head. I was able to ring around funeral directors. I was able to phone the Peugeot garage repeatedly to harass them into fixing my fucking car because I really needed it. I was able to go to the bank to deal with mum's money. I was able to phone friends who'd also lost a parent because I wanted to talk to people who'd gone through what I was going through.<br />
<br />
I was beyond sad, but I never felt that clinical depression darkness that I'm so familiar with. And I think the main reason for that was the amount of support I got. I spent most of the month following mum's death at my dad's house. There were always family members around helping out with stuff. When I came home for things like hospital appointments or to pick up my eventually repaired car there were always friends at my flat who'd come and bring food. I swear I didn't make myself a cup of tea for about a fortnight because there was always someone around to hand me a freshly-brewed cuppa.<br />
<br />
That's such a sharp contrast to my normal life. Ordinarily the only human beings I ever speak to are the receptionists at my GP's surgery, my GP, the local pharmacist, and the doctors, nurses and receptionists at any of the 5 hospitals where I'm currently a registered patient. I'm such a frequent visitor to the gastroenterology clinic at my local hospital, and the rhinology clinic at the Royal National Throat, Nose and Ear hospital that I don't need to give my name at reception any more; they know who I am. I have no local friends to lean on for real life support, the only socialising I ever do is on social networks like Twitter where I engage with people who are scattered across the whole planet.<br />
<br />
I can't be sure that such an unusual level of social support was the reason I didn't become clinically depressed in the immediate aftermath of my mum's death, but it certainly seems like the most obvious reason. In fact, it's the only thing I can think of. <br />
<br />
But the things that do make me clinically depressed are exactly the kinds of things that Fraser believes people shouldn't receive medication for. I have a shit home life, no partner, and no job at all; never mind a shit one. <br />
<br />
I don't take anti-depressants because they're forced upon me by pharmaceutical companies trying to enforce happiness. I went to my GP out of desperation because I couldn't carry on living feeling as awful as I did.<br />
<br />
Yes, a great many of the things that make me feel low are down to social pressures. I don't feel a social pressure to have a compulsory smile on my face but we do live in a society in which people are pressured to have a job. Which is a huge problem for someone like me who is too ill to work. <a href=http://www.lbc.co.uk/ target=new>LBC</a> (which is basically just a phone-in version of the Daily Mail) on in the Doctor's waiting room reminds you of the sheer number of people who think you're a scrounger and resent paying their taxes to keep you alive. You can't even go to the emergency dentist to get a broken filling fixed without being made to feel small when she asks you "what do you do for a living?" And this is just the social pressure angle, other issues with being too ill to work include: Never having any money, not having career satisfaction, and, of course, being ill all the time.<br />
<br />
The fact that I live in a flat that's not accessible enough for my impaired mobility depresses me. Moving depresses me even more. In fact, it was living in the property before this one - the one that was a rodent infested hole the size of a cupboard - that prompted me to seek pharmacological help because I couldn't bear my living situation any more.<br />
<br />
My absence of family depresses me. I have no partner, no children, no siblings and no mother. When my dad dies I will be absolutely and truly alone in this world. And don't bother suggesting that I might have found a partner by then: We all know <a href=http://lisybabe.blogspot.co.uk/2011/05/somebody-tell-me-why-im-on-my-own-if.html>that's never going to happen</a>. <br />
<br />
Being ill depresses me. The <a href=http://www.oif.org/site/PageServer?pagename=FastFacts target=new>mobility impairment</a> I've had all my life doesn't depress me in itself, but I can't count the number of times I've been reduced to darkness by people treating me cruelly because they're <a href=http://lisybabe.blogspot.co.uk/2013/07/ableism-stop-insulting-me.html target=new>disablist</a> bastards. Some of my physical health problems cause me to be depressed directly. There's a phase after a migraine called <a href=http://thatmword.com/post/27622639638/migraine-stage-4-postdrome target=new>"postdrome" which can cause depression</a>. You'd think I'd be happy that my pain had cleared up. But instead, after a migraine, all I can think about is how much I'd be better off dead. I try to remind myself that it's just the postdrome and I'll be fine in the morning; but it's hard to keep telling yourself that when the rest of your life is a fucking disaster.<br />
<br />
I've failed at doing everything I loved. I <a href=http://lisybabe.blogspot.co.uk/2011/12/im-not-sure-all-these-people-understand.html target=new>failed at swimming</a>. I <a href=http://lisybabe.blogspot.co.uk/2011/11/so-come-on-let-me-entertain-you.html target=new>failed at comedy</a>. I tried doing an <a href=http://lisybabe.blogspot.co.uk/2007/09/just-now-i-was-flicking-back-through.html target=new>awesome Masters degree</a> but never got to finish it because of my health. There is literally nothing in my life I can look back upon that I've succeeded at.<br />
<br />
According to Giles Fraser, none of this list of misery warrants medication because it's normal to be sad when your life is terrible. And pathologising this normal response is just making Big Pharma rich. It doesn't matter that without drugs to boost my mood that I might not last long. Even just looking at this list of things in black and white makes me wonder what the point is of carrying on.<br />
<br />
There are plenty of physical conditions that are a perfectly normal response to life's ups and downs that we medicate. Catching a cold is a perfectly normal response to sitting next to someone with a cold on the bus. We medicate colds with paracetamol and decongestants. Breaking your ankle is a perfectly normal response to slipping on an icy pavement. Should we not medicate that with painkillers? Or are the painkillers just pathologising a normal response to winter?<br />
<br />
If it's OK to medicate physical responses to life's normalities that make you ill or cause you pain, why should mental illness or pain of social origin be treated any differently?Lisahttp://www.blogger.com/profile/16714918894319998184noreply@blogger.com4tag:blogger.com,1999:blog-6233625.post-22674108211885613542013-07-30T11:00:00.000+01:002014-07-24T18:19:03.897+01:00"Ableism"? Stop insulting me.Historically it's been the case that the single word to describe disability-based discrimination in British English has been "disablism". North Americans have always preferred "ableism", but you didn't see it used by Brits that often. Sadly the word "ableism" is creeping further and further into British English usage. I've seen it used repeatedly by journalists and popular bloggers which validates its use; and every time I see it I feel hurt.<br />
<br />
For much of the rest of this post to make sense you really need to go and read <a href=http://www.xojane.com/issues/i-am-not-a-person-with-a-disability-i-am-a-disabled-person target=new>an article I wrote for xojane.com last November</a>. I'll just finish this drink while you're reading that.<br />
<br />
<br />
<br />
<br />
<br />
<br />
Back with me? OK, excellent. Let's crack on to why I find the word "ableism" insulting.<br />
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As you will have read, there are are two ways of considering disability. There's the medical/individual model in which a person with an impairment is seen as lacking in ability, and there's the social model in which a person with an impairment is considered disabled by social barriers.<br />
<br />
The problem with the word "ableism" is that it's predicated on the medical model. The "blame it on their brain/body" individualised perspective of disability should be consigned to the history books and instead we need to focus on dealing with disabling barriers - from architectural to financial - that make life difficult/impossible for disabled people.<br />
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The word "sexism" refers to discrimination on the grounds of sex. It's discrimination that can happen to anyone of any sex whether they're male, female, intersexed, or have some other identity. Everyone has a sex and anyone can be discriminated against because of it. Though it's far rarer for men to be victims of sexism than anyone else. One might argue if a man can truly be discriminated against in a patriarchal society, but it's hypothetically possible.<br />
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The word "racism" refers to discrimination on the grounds of race. Everyone has a race and anyone can be discriminated against because of it. Again, one might argue that it's not truly possible for a white person to be a victim of racism in a society geared to the benefit of white people. But it's hypothetically, and legally, possible. There have been legal precedents set in the UK by white people bringing discrimination claims under Race Relations Act. <br />
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The idea behind the word "ableism" is that everybody has an ability level and anyone can be discriminated against because of their level of ability. In other words: If you're a person with an impairment on the receiving end of "ableism" then you have to be lacking in ability.<br />
<br />
Imagine you and I are going to see a film together. We try to catch a bus to the cinema and the driver refuses to get the ramp out because he's an arsehole. After he shuts the door in our faces and drives off you yell at him "ableist bastard!" What you're doing there is that you're making the issue about my ability levels, rather than society's disabling barriers.<br />
<br />
I am not intrinsically unable to travel by bus. Buses are a product of our society so making them difficult to access is a socially-created barrier. Buses could have been designed from scratch to be fully inclusive; but they weren't. It's only been in the last 15 to 20 years that we've seen any kind of wheelchair access on buses at all in the UK. As they stand now they only have one wheelchair space per bus which is still a hugely disabling design flaw for a couple who are both wheelchair users, or a parent and child who are both wheelchair users.<br />
<br />
Then there's the fact that - with the current models of bus design - the onus is on the bus driver to not be a discriminatory dick. He has to pull up close to the kerb for the telescopic ramp to reach. He has to be willing to do his job and press the damn button to extend the telescopic ramp onto the pavement. He also has to be willing to do his job and ask any parents with buggies in the wheelchair space to fold their buggy: It's not called the "wheelchair space" for nothing. A lot of bus drivers just can't be bothered to not disable me and I'm refused entry to about 1 in every 5 buses I try to board. Which, I'll admit, is an improvement on a decade ago where the refusal rate was at least 50%.<br />
<br />
Given that all these barriers are socially constructed; surely you can see why I'd be peeved at you shouting "ableist bastard" at the bus driver; which brings my ability levels into the equation rather than it being about his behaviour?<br />
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So I, like many other disabled Brits, use the words "disablism" and "disablist" instead. In the bus scenario above; if you shouted "disablist bastard" you would be correctly referring to him disabling me. And, of course, the fact that the design of the bus disables me too: If the bus was fully accessible without the driver having to do a thing my life would be much more simple.<br />
<br />
In anticipation of the comments saying "but if 'ableism' puts the blame on your lack of ability, then surely you're saying that the sex and race of victims of sexism and racism is part of the problem too?"<br />
<br />
Absolutely not. If the bus driver refuses to let me on because I am a woman then I am a victim of sexism. My sex is a matter of fact. If the bus driver refuses to let me on because I am white; then I am a victim of racism. My race is a matter of fact.<br />
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My lack of ability is not a matter of fact. As I have explained (or tried to) I am only perceived as lacking in ability by people who hold a medical/individual perspective of disability. I believe that I am disabled by social barriers (like badly designed buses, and bus drivers being dicks), not that I am intrinsically lacking ability.<br />
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Not all disablist discrimination falls under the realm of being a disabling barrier. I'm also sometimes subjected to disablist abuse from people who view my existence as a disabled person abhorrent. I get online commenters telling me that I should've been killed at birth to save taxpayers' money. That doesn't prevent me from getting on a bus or install steps at the entrance to the building I live in. But it's abuse motivated by the fact that I am disabled; therefore it is disablist abuse.<br />
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As I said in the xoJane article; it's up to people how they choose to identify. If they choose to consider themselves as a person with a disability rather than a person disabled by society; that's their prerogative. Likewise; if people choose to view themselves as lacking in ability therefore as victims of ableism then that is their choice.<br />
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However I'm an avid believer in the social model of disability. I hope I've shown how "ableism" is predicated on the medical model. (I have a thumping migraine. For all I can see to read it back off this white screen I might have just written "blah bla blah blah blah bla" over and over again.) Therefore; if you and I ever try to catch a bus together and the driver slams the door in our faces I would request that you describe me as having been on the receiving end of "disablism" not "ableism". Much like I would always ask you to describe me as a "disabled person" and never a "person with a disability."<br />
<br />
Thank you.Lisahttp://www.blogger.com/profile/16714918894319998184noreply@blogger.com4tag:blogger.com,1999:blog-6233625.post-86033336183219283792013-04-09T16:20:00.000+01:002013-04-09T16:20:06.182+01:00The Difference Between Relief and Joy #thatcherLots of people are celebrating the death of Margaret Thatcher which is pretty crass. I've lost my mum and it doesn't matter how grown-up and independent you are when you lose your mum; it hurts. I can't imagine how it feels to be Thatcher's children knowing that people are throwing street parties in celebration of your loss.<br />
<br />
But I can understand why there are some people feeling very relieved right now.<br />
<br />
Someone ruined my childhood. I'm nearly 34, haven't seen her for 23 years, but I still have nightmares about her. Co-incidentally the last time I saw her was the same year Thatcher left office.<br />
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For 23 years she hasn't been able to hurt me. But she still holds power over me.<br />
<br />
When the <i>Panorama</i> about Winterbourne View aired my Twitter timeline filled with people saying "I'm going to go to sleep tonight hearing those screams." You know whose screams I heard that night? My own. Once again I was 6 years old and crying and begging for the torment to stop.<br />
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Like I say: I haven't seen or heard from her in 23 years. I have no idea if she's alive or not. Once or twice I've tried Googling her the morning after the nightmare before; but haven't been able to find that out.<br />
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If I were to stumble across an obituary for her I wouldn't celebrate the fact that she's dead. I wouldn't celebrate the grief of her family: Her family did nothing to hurt me. But I would feel a rush of relief and safety, even though she hasn't been in a position to cause me harm since 1990. I obviously can't be sure of this; but I strongly suspect that the frequency of nightmares about her will lessen dramatically.<br />
<br />
I didn't really understand the harm Thatcher caused during her years in office: She became PM 2 weeks before I was born, and I was 11 when she left office. On both sides of my family I come from very working class backgrounds. I knew that Thatcher was bad because I heard it so many times from the people around me; but I didn't understand <a href=http://whydopeoplehatethatcher.com/all target=new>why</a>.<br />
<br />
Now I'm old enough to understand the number of lives Thatcher ruined; and how she ruined them. I understand how her policies continue to ruin lives: Just look at the number of homeless people because she sold council housing and failed to build new properties to replace them. I understand the anger of the survivors of Hillsborough and the anger of the relatives of the deceased.<br />
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Thatcher has been out of office since October 1990: Three months after I last saw the woman who made the 80s hell for me. Since 1990 Thatcher hasn't had the power to continue to ruin those peoples' lives.<br />
<br />
But I can also understand the psychological harm she caused to her victims. And I can understand why her victims might feel relieved that the woman who caused them so much pain can no longer do so. Though out of office, 87, extremely frail and in a position to hurt nobody; the psychological bond of the damage she caused hung over her victims' heads.<br />
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Her victims will never be entirely free from the pain she caused them, but I can understand why that pain has lessened slightly this week. A few of the strings holding that history over her victims heads have been broken.<br />
<br />
Everyone who suffered because of her actions has a right to feel relief this week. But no-one has the right to celebrate that a family is in mourning. To do so makes you no better than her when she praised people responsible for mass killings. And given that she caused so much pain; do you really want to stoop to her level? Really?<br />
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<a href=http://donthatedonate.com/ target=new>Don't Hate, Donate</a> is a brilliant idea. Instead of sinking to Thatcher's level and celebrating death; why not donate to a cause that supports her victims?Lisahttp://www.blogger.com/profile/16714918894319998184noreply@blogger.com2tag:blogger.com,1999:blog-6233625.post-25103376768780049922013-04-04T20:36:00.000+01:002013-04-06T10:40:28.372+01:00♫...And I shouldn't be here, without permission. I shouldn't be here...♫"I wish you'd never been born."<br />
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I remember the Sunday morning a couple of years ago when a well-known pro-eugenics tweeter was banging on about how babies with genetic conditions shouldn't be born. Despite claiming he was not disablist towards disabled people once they'd done the getting-into-the-world thing, all I could see in those tweets was that he wished I'd never been born because I have a genetic condition. He might have blocked me on Twitter so he can't see me; but I still see him RTed into my timeline frequently (something he said is actually 4th from the top in my timeline as I type). I'm constantly reminded that someone that thinks the world would be a better place without me in it is so well liked among the people I respect enough to follow on Twitter.<br />
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I remember all the times I've read that "parents on benefits shouldn't have kids. They shouldn't have kids other people will have to pay for." That includes my parents. So these people are saying that I should never have been born because my dad was forced out of work and onto benefits by impairment not long before I came along (my mum became a housewife when she married my dad because that's what women did in the 70s). I haven't just read it in the right-wing press. I've heard it from people I know. I've even heard it from other disabled people.<br />
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They may not have directly used the words "Lisa Egan should not be here," but it was what I inferred from their statements.<br />
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I remember the times my father said it to me when I was growing up. He was, and still is, someone that demands to be the centre of attention at all times. When I was a child my mum prioritised me over him and he resented the little brat getting more of his wife's attention that he did.<br />
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It's a powerful statement that haunts you; knowing that people think you shouldn't be here.<br />
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I remember a very long time ago seeing a mother on the news <i>with her young child</i> saying that if she'd known her daughter was going to have Spina Bifida she'd have had a termination. That child knows that not only is she unwanted, but she's so unwanted that her mother desired to tell the country about it. Her main passion was dancing to pop music; and at her age (IIRC she was about 4) that should have been all she had to worry about. She shouldn't have had to have heard from the people closest to her that they'd prefer her not to be around.<br />
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This week there have been 11 living children hearing all about how they shouldn't have been born. In the unlikely event that there is an afterlife where you look down on the world you left behind; there are a further 6 children hearing the same words.<br />
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The press is full of stories about how Mick Philpott's children were only born to milk the welfare state. Right wing commentators are queueing up to appear on the news to talk about how families shouldn't have so many children. There are, of course, plenty of people claiming that people living on benefits shouldn't be having children at all. <br />
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The most hurtful thing has got to be that these 17 children have been singled out by someone at the heart of government, the <a href=http://www.guardian.co.uk/society/2013/apr/04/mick-philpott-benefits-lifestyle-questioned target=new>Chancellor</a>, as being "a lifestyle" that needs to be "handled". Not human beings deserving of respect. Not people that have lost siblings. Not lives that have been cut short. But a problem that needs to be "handled" by government.<br />
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When I've read in the press that parents on benefits shouldn't have kids I knew they weren't talking about me <i>directly</i>, they were talking non-specifically about a group of people I happen to belong to. The same when I read tweets about how babies with genetic conditions shouldn't be born. But this week, all week, there have been 11 children hearing very loudly and clearly every time they turn on their TV that they - those children whose father is Mick Philpott - should not have been born.<br />
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I can't even imagine how it feels to be told on the front page of every paper, and on every news bulletin, that you - specifically you - should not exist because of someone you happen to be related to. Someone you didn't choose to be related to. And at a time when you're grieving for the loss of your siblings to boot.Lisahttp://www.blogger.com/profile/16714918894319998184noreply@blogger.com1tag:blogger.com,1999:blog-6233625.post-41194211652727873862012-11-06T10:30:00.000+00:002012-11-06T10:30:02.106+00:00♫...Pretty in pink. Isn't she?...♫I want to say "thank you" to those of you who put me on this year's <a href=http://www.independent.co.uk/news/people/news/the-ios-pink-list-2012-8216187.html target=new>Independent on Sunday Pink List</a>: Their annual list of the most influential LGBT people in the country. There are a couple of people I need to give extra special thanks to.<br />
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Firstly to <a href=https://twitter.com/e_lisney target=new>Eleanor</a> for asking the question "How do we get a crip on the list?" after reading last year's and noticing how very non-disabled it was. Extra thanks also need to go to <a href=http://blobolobolob.blogspot.co.uk/2012/10/lisa-egan-for-2012-pink-list.html target=new>Goldfish</a> and <a href=http://davidg-flatout.blogspot.co.uk/2012/10/vote-early-vote-often-vote-lisy-babe.html target=new>DavidG</a> for actually asking people to vote for me. It was such an honour that people felt so convinced that I should be on the list that they not only filled in the nomination form themselves but actually said to other people "look: Lisa should be on that list so vote for her. Got it?"<br />
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The blurb describing me is quite hilarious. "Bravery and experience"? I've been known to phone my parents just to scream at them because my cat had given me a dead mouse. And "experienced" makes me sound like the town tart. But it's genuinely nice to be described as "popular" because so many people felt I should be on the list. It's the only time in my life I will ever get called that. Ordinarily "popular" would be the last word that'd come to mind when describing me. "Weird girl who sits in the corner on her own staring at her shoes" is usually more apt.<br />
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In the end it turned out that I was amongst company: Not only am I on the list but there are Paralympians at number 4 (Lee Pearson) and 100 (Claire Harvey). This is still, of course, not representative of society as a whole. Around 18% of the total population have some kind of impairment and that's likely to be slightly higher among the gay community because of the <a href=http://www.nhs.uk/Livewell/LGBhealth/Pages/Mentalhealth.aspx target=new>increased incidence of mental health problems</a> and the <a href=http://www.cdc.gov/hiv/topics/msm/index.htm target=new>rates of HIV</a>. With that in mind, there being 3 disabled people on the list is a start, but it's not enough.<br />
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Of course, it's highly likely that a couple of the other 98 do have some kind of impairment like dyslexia or bipolar disorder but aren't out about that and/or don't identify as "disabled". That's absolutely their right to identify how they choose to and to be in control of what information they put into the public domain. But it's also <a href=http://stelladuffy.wordpress.com/opinion/the-importance-of-being-coming-staying-out/ target=new>important to be out</a>. That piece by Stella Duffy is about the importance of being out as gay - just like the list is about the importance of being out as gay, bi or trans - but the need to be out about belonging to a certain group is an issue that spans all minorities.<br />
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On the other hand you could make the case that there shouldn't be any disabled people on the list because we have such a low social status and it is supposed to be the most "influential" queers in Britain. I'm listed as a disability rights activist but if I seriously had any kind of influence in our society then the Welfare Reform Bill would never have become the Welfare Reform Act because the public would have given a crap. But then you end up with a circular situation where disabled people lack influence because we're ignored by the media because we lack influence. Putting some disabled people on the Pink List is an important way of breaking that circle and acknowledging that disabled people exist.<br />
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Another reason it's so specifically important to acknowledge the existence of disabled LGBT people is because of the common misconception that we don't or shouldn't exist and the double discrimination we face. For the most part disabled people are viewed as being asexual or it's believed that we should be asexual. <a href=http://www.guardian.co.uk/lifeandstyle/2008/oct/26/observer-sex-poll-20082 target=new>In 2008 70% of people asked told The Observer that they wouldn't shag a cripple</a> and I've never seen any indication that gay people think any differently. If you visit a lesbian dating website you'll see that almost every profile states "no crazies". I even saw one "no strange limps" before deciding it was just futile and that I'd be better off watching <i>CSI</i> and wishing Sara Sidle were mine.<br />
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I think LGBT people with learning difficulties are probably the most oppressed of all. We live in a culture that likes to infantilise intellectual impairment ("he has a mental age of 6...") despite the fact that an adult with learning difficulties is just that: An adult. People who have the capacity for consent should be able to have consenting sexual relationships. Many straight people with learning difficulties encounter barriers with getting people the people in their lives to understand that; the process of coming out as gay can be nigh on impossible. Last year a court <a href=http://www.telegraph.co.uk/news/uknews/law-and-order/8301100/Court-bans-man-with-low-IQ-from-having-sex.html target=new>banned a man from having sex because he had a low IQ</a> because he might get a girl pregnant. I'm pretty sure that that wasn't going to be a problem for the man he was in a relationship with.<br />
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Another very specific issue affecting LGBT disabled and older people is the problem of homophobic carers. If you're dependent on someone to get you out of bed and put you in your wheelchair, to feed you and to give you fluids and medication then your life can be endangered by being out. <a href=http://en.wikipedia.org/wiki/Direct_Payments target=new>Direct Payments</a> and <a href=http://www.ageuk.org.uk/home-and-care/help-at-home/self-directed-support/ target=new>Personal Budgets</a> allow one the opportunity to choose who you employ to assist you, but not everybody has that as an option and some people still have agency carers inflicted upon them and they get no say in who is being sent into their home.<br />
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Such grave issues make the <a href=http://www.bbc.co.uk/ouch/features/locked_out_lesbian.shtml target=new>lack of physical access to gay bars and clubs seem to pale into insignificance</a>. But improving visibility of LGBT disabled people, by letting us get onto the dancefloor with our peers, we can start to break down these barriers. <a href=http://www.huffingtonpost.com/2012/11/05/glee-modern-family-hollywood-reporter-gay-tv-poll_n_2077149.html target=new>Improving visibility of gay people improves attitudes towards gay people</a>; it's a logical extension to accept that improving visibility of gay disabled people will improve attitudes to the minority within a minority. Those of us who are in a position where it's safe to be out need to do so to improve social attitudes and make the world safer for those who would be endangered by being out.<br />
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I know I've gotten a bit too old and boring for clubbing until 5am but I still can't think of any gay bars/clubs in London that are fully accessible. I can think of one or 2 with a bar area that's step free, but with no such thing as accessible toilets. Which is really just want you need when you're drinking alcohol. My local gay bar is under threat of closure. I probably should give a shit about the closure of a beloved community hangout but I really can't muster up concern given the flight of stairs to get into the place.<br />
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Three disabled people on the Pink List is such an important step towards dealing with these double discrimination issues, but it is only one small step. There's still so much more change we need to see. Hopefully next year we'll see further strides towards towards equality in both the list itself and the year building up to it. For now I'll just smile about the fact that Paralympic dressage gold medallist Lee Pearson came one spot on the list above Olympic dressage gold medallist Carl Hester. And about being the 78th most influential gay.Lisahttp://www.blogger.com/profile/16714918894319998184noreply@blogger.com3tag:blogger.com,1999:blog-6233625.post-10229311044765092852012-10-23T18:41:00.001+01:002012-11-08T19:25:28.943+00:00Should He Stay or Should He Go Now?Sometimes a news story is so big people use the expression "you'd have to be living under a rock" in order to have not heard about it. In the case of the <a href=http://www.guardian.co.uk/media/jimmy-savile target=new>Jimmy Savile</a> story that has exploded this month; I'm pretty sure that even the woodlouse living under that large pebble in my garden has a basic understanding of the case.<br />
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The BBC is holding <a href=http://www.guardian.co.uk/media/2012/oct/16/jimmy-savile-scandal-bbc-inquiry-heads target=new>two inquiries</a> into what happened. Obviously the first is in to how such a sex offender was able to carry out his crimes right under the BBC's noses. The second is into why 11 months ago Newsnight canned an investigation into these crimes.<br />
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Peter Rippon, who was responsible for cutting the Newsnight exposé, has <a href=http://www.guardian.co.uk/media/2012/oct/22/bbc-newsnight-jimmy-savile-scandal target=new>stepped aside</a>. Over the last 36 hours I've read several things along the lines of:<br />
<br />
<blockquote>Rippon shouldn't fall on his sword. All he did was can a Newsnight investigation after Savile's death. He had nothing to do with the perpetration of the crimes.</blockquote>.<br />
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The thing is: He unwittingly might have done.<br />
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When Savile's victims started coming forward the police undertook an assessment of Savile's crimes. They couldn't launch a criminal investigation because they couldn't prosecute someone that'd been dead almost a year.<br />
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But almost 3 weeks after the allegation floodgates opened the police turned the assessment into an <a href=http://www.bbc.co.uk/news/uk-20006049 target=new>actual criminal investigation</a> because the allegations implicated Savile's fellow paedophiles that are still alive.<br />
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We don't know who the co-accused are. The police aren't releasing that information because it would jeopardise their inquiries. All we know is that they're still alive and so potentially still raping children. If Newsnight had aired the film 11 months ago then these allegations would've come to light nearly a year earlier and his co-accused could've been caught that much sooner, potentially protecting any of their victims this past year.<br />
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Rippon's <a href=https://twitter.com/lisybabe/status/260748393138237440 target=new>disgusting attitude towards women</a> and <a href=http://www.guardian.co.uk/media/2012/oct/23/jimmy-savile-bbc-director-general-faces-mps-live#block-5086a17958f96784ee2909e4 target=new>belief that paedophilia isn't "the worst kind of sexual offence"</a> are quite evidence enough that he shouldn't be responsible for a news show. Because news does happen to women and children too; you know. But the fact that he could have blown open this news story a year earlier and in the process potentially protected victims of paedophiles proves that there's really no place for someone like him in investigative journalism.Lisahttp://www.blogger.com/profile/16714918894319998184noreply@blogger.com1tag:blogger.com,1999:blog-6233625.post-56651206205337713492012-07-30T10:40:00.000+01:002012-08-09T15:57:34.873+01:00♫...What's in your head, in your head?...♫Well... my jaw pain, allegedly.<br />
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Getting told that your physical condition is psychosomatic is <a href=http://new-kinda-freak.livejournal.com/52711.html target=new>disturbingly</a> <a href=http://diaryofabenefitscrounger.blogspot.co.uk/2012/04/its-all-in-your-head.html target=new>common</a>. In the past it's happened to me but only over a period of a couple of months, and it wasn't a serious condition anyway.<br />
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In 2003 or 04 (I remember it was when I lived in Golders Green, which was from June '03 to June '04) I finally told my GP that I had trouble making out what people were saying, especially if there was any background noise. It had been a problem for about a decade but I'd not bothered to see anyone about it. As hearing loss caused by a fractured <a href=http://en.wikipedia.org/wiki/Stapes target=new>stapes</a> is common in <a href=http://www.oif.org/site/PageServer?pagename=FastFacts target=new>osteogenesis imperfecta</a> my GP sent me to the <a href=http://www.uclh.org/OurServices/OurHospitals/RNTNE/Pages/Home.aspx target=new>Royal National Throat, Nose and Ear Hospital</a> to get my hearing looked out.<br />
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When my hearing test came back fine, the registrar told me that I was mad and purely imagining that I couldn't hear. He referred me to hearing therapy to "teach [me] how to hear". The hearing therapist was horrified at how I'd been spoken to. She also gave me an actual diagnosis which explained all my hearing issues: <a href=http://en.wikipedia.org/wiki/Auditory_processing_disorder target=new>Auditory Processing Disorder</a>. Yes, it's a brain condition rather than an ear condition; but there's nothing imagined or "mad" about it. It's essentially 'sound dyslexia'.<br />
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I've had another case where I was told that I didn't have the medical condition I do actually have, but instead of being told I was imagining it; I was told I had a different medical condition. For years I was told that I had nothing wrong with my sinuses, that I was having migraines instead. After a couple of years of Idiot Registrar not being able to spot inflamed sinuses when they literally sneezed on him; he finally deigned to look at a CT scan of them. "Oh, there is something wrong with your sinuses after all" was his comment upon re-entering the room.<br />
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Rather ironically I now do have migraines caused by my sinus problems going untreated for so long. The lack of treatment damaged the nerves in my sinuses and you have nerves that run through your nose and into your brain. The damage to these nerves triggers migraines in me. So thanks for that little gift, Idiot Registrar.<br />
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My jaw became an issue about 3 years ago. The muscles started spasming and it subluxed pretty regularly. I would often wish someone would stand on the right hand side of my face to keep my jaw where it was supposed to be. One day I remember <a href=https://twitter.com/bendygirl target=new>@BendyGirl</a> tweeting that she'd just stood on a friend's pelvis to reduce it; so I responded along the lines of "great! Now get down to London and stand on my face to keep my jaw in its socket."<br />
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Over the years my jaw problems have progressed. I reached a crunch point in the first week of February this year: My jaw hurt so much that I spent the whole week so bombed on morphine that I didn't even notice when I re-fractured the metatarsal I'd originally fractured 6 weeks earlier. And my jaw was still more painful than I could bear.<br />
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So I went to see my GP and he referred me to maxillofacial. <a href=http://lisybabe.blogspot.co.uk/2012/04/in-tweets-because-im-in-hurry.html target=new>The referral was rejected</a> and my GP was told to send me to the Facial Pain Clinic at the <a href=http://www.uclh.nhs.uk/ourservices/ourhospitals/edh/pages/home.aspx target=new>Eastman</a>. He did.<br />
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So I went to the Eastman on Wednesday expecting an examination of my jaw, some x-rays and general usual hospital appointmentness.<br />
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My appointment was at 9:30, which was about when I arrived at the building. The clinic I was going to was in an area marked "2" so logically I went to the second floor. Area 2 isn't on the second floor. Then there was the orderly jamming the lift door open with a laundry cart with me inside. I mean I was inside the lift, not the laundry cart. By the time I reached clinic reception I was 18 minutes late. They refused to see me for "being half an hour late". Which is odd because I hadn't realised that we now had 40 hour days.<small><sup>1</sup></small><br />
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I go to <i>a lot</i> of hospital appointments. Wednesday was my second appt in the space of 6 days. I think this is my first appointment ever that was running less than half an hour behind schedule which was why I was quite laid back about not arriving at the hospital bang on the appointment time. Smegging typical that the first time I encounter a hospital running on time reception is staffed by punctuality obsessives. But then I guess they would be the people who'd get a clinic on schedule.<br />
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They wanted me to go home and come back in September. Of course, I now know that it wouldn't have made a damn bit of difference, but at the time I was reduced to begging.<br />
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The doctor agreed to see me but I was then subjected to more tutting and eye-rolling from reception because I hadn't filled in my pre-appointment questionnaire, having banked on doing that in the waiting room.<br />
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I will say one thing for the clinic reception/waiting area: It's got aircon. Presumably because they also handle a lot of private patients. I guess if there's going to be a silver lining to the recent NHS Act it might be that with 49% of beds going to private patients we start to see hospitals that aren't all ovens.<br />
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The appointment itself lasted an hour which is unusual. You'd think that would be an example of excellent medical care, wouldn't you? Except it was 58 minutes of asking me about depression and 2 minutes of examining my face. Which really tells you what the clinic is all about.<br />
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Some gems from the consultation included his incredulity that the pain clinic have never sent me for counselling. Like talking about my feelings is going to stop my sinuses from hurting or cure my osteogenesis. I consider myself genuinely blessed to go to one of the few pain clinics where they don't go in for the bullcrap touchy feely stuff and just prescribe painkillers.<br />
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When talking about my sinuses he asked the question "and did they actually find anything wrong with them?" He was obviously working on the assumption that I don't have any real physical conditions and I just have conversion disorder. I'm surprised he didn't question my OI and claim I'm making my scleras blue by being miserable.<br />
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I should've foreseen what my diagnosis was going to be when I explained that because of my <a href=http://en.wikipedia.org/wiki/Hypermobility target=new>hypermobile</a> hands I do things like unscrew bottle lids with my teeth and he was totally unperturbed. People who care about my oral bone health usually go batcrap over that; even though my lack of useful hands make it non-optional.<br />
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He clearly didn't believe me when I explained about the subluxing jaw. He kept saying "but you've never had your mouth get stuck open and been unable to close it..." He seemed incapable of understanding that hypermobile joints dislocate easily, but they go back in pretty easily too. During the incredibly brief physical examination he exclaimed that the distance I can open my mouth is "very good." I'd bet my cat's whiskers that before my jaw became problematic I could open it even further. Despite his acknowledgement of the existence of hypermobility, he wouldn't accept that I had it in my jaw and clearly didn't believe my jaw had ever come out of its socket.<br />
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Notably he didn't ask me if I'm on bisphosphonates; a common treatment for osteogenesis. An important question given that it could cause osteonecrosis of the jaw. (I'm not, so that's not my problem.) <br />
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Unsurprisingly my diagnosis is that my jaw pain is psychosomatic. The cure? Group therapy. Really. They don't just have psychologists on hand at the facial pain clinic though; they even have shrinks ready to dole out psychiatric meds rather than accepting that <i>sometimes people have something wrong with their jaw</i>.<br />
<br />
Without any medical training myself I presume my knackered joint is causing my muscles to spasm in the same way that my weak hand joints cause muscle spasms when using a pen. Yes there is a stress element to it: Tense muscles get worse when you're more tightly wound generally; just ask anyone with cerebral palsy. But does that mean CP is psychosomatic? Of course not.<br />
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But what I am sure isn't psychosomatic is the crunching noise my jaw makes when I yawn or chew. It sounds and feels just like the crunching noise my right ankle often makes: A joint that's had its worn-outness confirmed by MRI.<br />
<br />
So now I know why maxillofacial rejected the referral: They obviously saw citalopram and amytriptiline on my drugs list and assumed there's nothing physically wrong with me; I'm just nuts. Despite the bone disease...<br />
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What can I do now? Well there's not much really I can do except go along to therapy and talk about my fucking feelings even though the flapping up and down will make my jaw worse, if anything.<br />
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Other suggestions for treatment include "a relaxing activity with a physical element like yoga or gardening." Logic fell over and died at this point: I already garden and my jaw fucking hurts.<br />
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I'm also supposed to get some exercise. You know; like the miles I push and the swimming I do. I may have been <a href=http://falseeconomy.org.uk/blog/disability-gym-access-cut target=new>priced out of going to the gym</a> but I don't spend <i>every</i> moment of the day gawping open-mouthed at the telly. That noise you can hear? It's logic turning in its grave.<br />
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I love the NHS. <a href=http://lisybabe.blogspot.co.uk/2012/03/health-minister-i-mean-sinister.html target=new>As I've explained before</a> a really important thing is giving feedback because that's how you help something you love function better. So hear this NHS:<br />
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You could save a fuckton of money if you stopped denying people medical help for years while they get worse claiming that the patient is "just depressed". It's the worsening which is where you lose the money. An assumption of conversion disorder should only be reached once you've ruled out <i>all</i> logical physical possibilities. It should never be a first stop before you've even carried out an examination. I know at least 10 people, probably more if I asked around a bit, who've at some point been diagnosed with conversion. One does actually have CD that fits, the rest were eventually given a physical diagnosis.<br />
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When I got home I was emotionally shattered from a shit appointment and physically shattered from driving back from visiting my dad in Colchester hospital the night before. I immediately crawled into bed. Thank goodness for cats: Betty decided to take my mind off things by lifting her tail up, reversing in and then sitting down on the pillow with her anus about 3cms from my nose. Finally something to laugh at on a miserable morning.<br />
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_______________________________________________________<br />
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<small><sup>1</sup> Thanks to Robin for the <a href=https://twitter.com/Inkysloth/statuses/228560067912413184 target=new>maths help</a> with that one. <a href=https://twitter.com/Uppo1963 target=new>@Uppo1963</a>, <a href=https://twitter.com/latentexistence target=new>@latentexistence</a>, <a href=https://twitter.com/PatParslow target=new>@PatParslow</a>, and <a href=https://twitter.com/indigojo_uk target=new>@indigojo_uk</a> all answered my question also; but Robin got there first.</small>Lisahttp://www.blogger.com/profile/16714918894319998184noreply@blogger.com7tag:blogger.com,1999:blog-6233625.post-57905894135003495392012-06-06T22:52:00.000+01:002012-06-06T22:52:26.963+01:00♫...Come and take a swim with me...♫During our recent spurt of summer, having spent 3 days splayed helplessly on the sofa, I decided I wanted to go for a swim in the open air to cool down a bit. Being probably the only lesbian in London to have <i>never</i> been for a swim in the <a href=http://www.klpa.org.uk/ target=new>ladies' pond on Hampstead Heath</a> I decided that it would be the perfect place to cool off.<br />
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Obviously my next step was too Google "Kenwood ladies' pond disabled access". I got nothing. Zip. Zero. Nada. The best result was a list of all the pools in Camden: It had details of the pond on the same page as the details for <a href=http://camden.gov.uk/ccm/navigation/leisure/sport-and-physical-activity/sports-centres/oasis-sports-centre/ target=new>Holborn Oasis</a> and the Oasis blurb mentioned the access at that pool.<br />
<br />
So I was still none the wiser about access at Kenwood. Next I did <a href=https://www.google.co.uk/search?q=kenwood+ladies+pond&hl=en&prmd=imvns&source=lnms&tbm=isch&ei=xPPKT_apDIej8QO6v5HODw&sa=X&oi=mode_link&ct=mode&cd=2&ved=0CFUQ_AUoAQ&biw=1024&bih=485 target=new>a Google image search for the pond</a> to see if I could see what the access was like. I could see it had a deck with ladders into/out of the water. I can't do ladders. I could see I'd be able to get in OK - you've got gravity on your side - but I didn't really fancy my chances of getting out again; the freeboard was just too great.<br />
<br />
Still being hot and still wanting to cool down I decided to just go there and have a look at what the access was: Maybe the freeboard wasn't as big as it looked in the pictures and I could manage? What if the ladder was at an angle so I could shuffle up the steps rather than an unmanageable vertical ladder?<br />
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After looking at <a href=http://www.cityoflondon.gov.uk/NR/rdonlyres/8D791952-7705-468D-A9B1-5020B85ABB52/0/HH_Diary_MainMap.pdf target=new>this map</a> I decided the most sensible place to park my car would be on Millfield Lane in Highgate.<br />
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Foolishly I assumed there would be maps of the heath on signs around the place that I could use to then find the way from the car to the pond. Yes, I know I've lived in north London for 9 years, but I don't know the heath like the back of my hand. I never go there. Manual wheelchairs and steep hills aren't a fun combination. But I do drive past the heath all the time so I've noticed the <a href=https://www.google.co.uk/search?q=hampstead+heath+signs&hl=en&prmd=imvns&source=lnms&tbm=isch&ei=4PbKT8OoBIXU8QPXtOEG&sa=X&oi=mode_link&ct=mode&cd=2&ved=0CFEQ_AUoAQ&biw=1024&bih=485 target=new>signs</a> at all the entrances and assumed most of them had maps on them. I assumed wrong.<br />
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"Never mind," I thought. "Google 'Hampstead Heath map' on your phone." <br />
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No signal up there. I'd recommend people go up there with the map pre-loaded on their phone for reference. If you're on Orange anyway.<br />
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So I went wandering. Despite the abysmal gravel paths and hills so step I genuinely didn't know if I could make it to the top: I actually enjoyed myself. It was beautiful wandering around in all the sunshine.<br />
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I did eventually find the ladies' pond after 2 hours of meandering. At 8:15pm. It closed at 8:30. By the time I'd pushed the last few metres over horrific paving and gotten changed I would've literally had no more than 60 seconds in the water. But instead of just going back to my car I did go all the way to the pond to scope out access for future reference so it wasn't a completely wasted journey.<br />
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Having spent about an hour scrutinising photos to try and work out whether or not I could manage to get out of the water I couldn't believe the first thing I saw when I rounded the corner to see the deck: A hoist.<br />
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<div class="separator" style="clear: both; text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEg1TAau4TJStfZJCS5SVeSTAf3BVyGODd6Xt7b_oZ-ar46CmHgLYPhjTHKsbhjXaeXIp3c0Sn6r8gZ-fS1qjHK3dnNRH3nE18Rda8dcGNaJ2eo3EkL_dSrDSIkyj44oVB-dTdodVQ/s1600/IMG_0572.jpg" imageanchor="1" style="margin-left:1em; margin-right:1em"><img border="0" height="239" width="320" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEg1TAau4TJStfZJCS5SVeSTAf3BVyGODd6Xt7b_oZ-ar46CmHgLYPhjTHKsbhjXaeXIp3c0Sn6r8gZ-fS1qjHK3dnNRH3nE18Rda8dcGNaJ2eo3EkL_dSrDSIkyj44oVB-dTdodVQ/s320/IMG_0572.jpg" alt="picture of a flatbed hoist on the deck in front of the water. Just to the left is the lifeguard tower."/></a></div><br />
Making things physically accessible is massively important. But something can never be truly accessible unless you provide <i>information</i> about access. I'd wager most disabled women have never considered going for a dip there because there's no access information published on the web so they assumed there were no adjustments.<br />
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That's why I'm writing this post. Not because it's an interesting topic that I think will engage readers, nor because I'm seeking catharsis through writing out the thoughts in my head. This post is simply about information for the next woman who Googles "Kenwood ladies' pond disabled access".<br />
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Of course, access isn't just about getting into and out of the water. You have to start with getting to the pond. As you can see on this map, there's only one path you can take to get to the ladies' pond (14). Whether you're coming from the north or south you have to take the path I've painted pink: <br />
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<div class="separator" style="clear: both; text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEipBwsHaXB8Pb6WlxRxs6IHtp1_IlxH3nOztmW624m44C0crso5UCrZpmNwAzUTuudF5bmOVXFal-HYdI0q1m4GI46UKADekm1xk8MKK_WMesxd2OQg2qH_CQeQgq-xAdyxUM-aaw/s1600/Ladies%2527+pond+map.JPG" imageanchor="1" style="margin-left:1em; margin-right:1em"><img border="0" height="250" width="320" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEipBwsHaXB8Pb6WlxRxs6IHtp1_IlxH3nOztmW624m44C0crso5UCrZpmNwAzUTuudF5bmOVXFal-HYdI0q1m4GI46UKADekm1xk8MKK_WMesxd2OQg2qH_CQeQgq-xAdyxUM-aaw/s320/Ladies%2527+pond+map.JPG" alt="a section of a map of Hampstead Heath showing the ladies' pond, with the path to the pond highlighted in bright pink. The pond itself is labelled '14' hence my reference to the number 14 in the last paragraph."/></a></div><br />
The quality of the paving is truly abysmal:<br />
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<div class="separator" style="clear: both; text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjEUba_drbR18emDhIAYcrzjFhPBi99GzdaLBdIVGyZtmQeU83IDcYHjg3UyULl6h5dDivfbzPaJ5pvKjjSj0qZbuHXPYVfiRJAA2xF9VV5fkrVXPa3MHn7Crvw0wmQ3QoPTaiUJQ/s1600/IMG_0568.jpg" imageanchor="1" style="margin-left:1em; margin-right:1em"><img border="0" height="239" width="320" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjEUba_drbR18emDhIAYcrzjFhPBi99GzdaLBdIVGyZtmQeU83IDcYHjg3UyULl6h5dDivfbzPaJ5pvKjjSj0qZbuHXPYVfiRJAA2xF9VV5fkrVXPa3MHn7Crvw0wmQ3QoPTaiUJQ/s320/IMG_0568.jpg" alt="lumpy uneven paving that wheelchair wheels are prone to catching on and making you land on your chin #1"/></a><br />
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<a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjZGB1ZcDzViJ6VbMHsGKVxgSNAzQntQExQwiaVdnBsBfCiHRCWvzOotxdCe73PEU23o9zQSOfOle0L1zQeFGAGerqdYTw2xd1qhCn_mNswfyC1rhhQ9HeN46iv_TlaqdG3app70Q/s1600/IMG_0571.jpg" imageanchor="1" style="margin-left:1em; margin-right:1em"><img border="0" height="239" width="320" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjZGB1ZcDzViJ6VbMHsGKVxgSNAzQntQExQwiaVdnBsBfCiHRCWvzOotxdCe73PEU23o9zQSOfOle0L1zQeFGAGerqdYTw2xd1qhCn_mNswfyC1rhhQ9HeN46iv_TlaqdG3app70Q/s320/IMG_0571.jpg" alt="lumpy uneven paving that wheelchair wheels are prone to catching on and making you land on your chin #2"/></a></div><br />
They're just two rather arbitrary shots taken along the path. I kept getting people coming up behind me asking if I needed help. The terrain is so uneven that you couldn't accept help if you wanted to because within seconds your front wheels would catch on something sticking up, the person would continue pushing forwards, and you would get tipped out of your chair and onto the floor; chin first. You just have to make your own way very slowly and carefully.<br />
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Should you make it to the pond without ending up in an ambulance the access improves greatly. As you can see in the photo of the hoist: The area around the pond itself is concrete which is perfectly easy to push across. There's an accessible toilet, but unfortunately there's nothing to sit on in there to get changed. There is seating outside for getting changed, but I would imagine that for people needing to remove catheter bags and so on while getting changed that that then poses the problem that there's also no toilet by the seating!<br />
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I went back the day after my exploratory mission and this time actually got to swim. Being an unheated pond it's not suitable for people whose conditions are exacerbated by coldness. You can check the water temperature before you leave the house on the <a href=http://www.cityoflondon.gov.uk/Corporation/LGNL_Services/Environment_and_planning/Parks_and_open_spaces/Hampstead_Heath/Swimming.htm target=new>City of London website</a>. It was a boiling hot day and people with osteogenesis imperfecta are prone to overheating. So for me getting into a pond that was 18°C was lovely.<br />
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There's no water shallow enough to stand in so don't do what I foolishly did and wait until you're in the water before putting your hat and goggles on. I ended up jumping back onto the hoist seat for a sec to free up my hands for putting them on.<br />
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Something else I didn't consider with not being an open water swimmer was goggle fog. In a pool modern goggles don't fog too badly. But in a pond there's a difference of about 20°C between the temperature of your face and the temperature of the water. Not having any <a href=http://www.swimshop.co.uk/Kiefer-Anti-Fog-Drops-PANTIFOGSOLUTION/ target=new>anti-fog stuff</a> meant that I had to stop every few strokes to de-mist because I couldn't see where I was going. Lesson learned for next time.<br />
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Goggle fog did give me the impression that it's not an overly accessible experience for people with visual impairments. Leaves and other pondy scum stuff loiters around the edge so you want to avoid that. You need to dodge buoys and at one point I had to give way to a couple of ducks. I can imagine that finding yourself fighting with an angry duck you didn't see coming isn't fun. Obviously being a pond rather than a pool there are no high contrast markings on the bottom to guide. Apparently they do sometimes have a lane rope out that you can swim along, but the banks of the pond don't look that easy for a <a href=http://atwiki.assistivetech.net/index.php/Tapper_(blind_swimming) target=new>tapper</a> to stand on. And as I said before: You probably don't want to be getting too close to the edge unless you want to be picking pond weeds out of your ears.<br />
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Being a pond rather than a pool; the water is full of stuff. You find yourself swimming with ducks and fish, which means that also in there is duck poop and fish poop. While you're treading water to de-fog your goggles you'll get weedy things wrapped around your ankle. So it's quite remarkable that upon getting out of the water you feel cleaner than you do when you get out of a swimming pool. And it's not just a matter of perception: Cleansing my face and then looking at the cotton wool I noticed that less dirt came away than when cleansing my face after a swim in a chlorinated pool.<br />
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As someone that reacts badly to chlorine being able to swim in a body of water that isn't full of bleach was a real plus. I can swim in a pool once a week at most or the chlorine is just too much for my knackered sinuses. It was lovely to be able to swim without having to suffer streaming eyes and nose afterwards.<br />
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Given how not gross I felt I decided to wait until I got home before having a shower rather than having to fuss with figuring out a plan for how to manage potentially inaccessible showers. Apparently they have both indoor and outdoor showers but there's a step up to the indoor ones. I didn't find out whether or not they have a shower chair to sit on to use the outdoor showers: Obviously you can't sit in your wheelchair in the shower.<br />
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Will I go back again? Almost certainly. Obviously I'm not batshit enough to be swimming in there in January (it's open 365 days a year) but it was an enjoyable way to cool down on a hot day. I just hope the Corporation of London tarmac that bloody path before I get tipped out of my wheelchair, land on my chin and break my face.Lisahttp://www.blogger.com/profile/16714918894319998184noreply@blogger.com3Kenwood Ladies Pond51.566960396460608 -0.1605463027954101651.564492896460607 -0.16548180279541017 51.56942789646061 -0.15561080279541015