Another friend of mine died today. That's three in three months.
This time it was the wonderful Lucy Glennon.
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 Hardest Hit march in London.
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 debra. 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.
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.
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.
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.
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.
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.
Showing posts with label friends. Show all posts
Showing posts with label friends. Show all posts
29 January 2015
08 December 2014
Death
I've lost 2 friends in the past couple of weeks. First there was Tracey, and then Stella this weekend.
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."
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.
Felicity Ward, Tiernan Douieb, Stella and me
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.
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 her future self.
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 status update:
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.
And people have respected her wishes. I haven't seen a single snowflake.
But BuzzFeed are dicks.
In 2012, Stella wrote this:
So I can just imagine how she'd feel about an article Brad Esposito 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.
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.
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 need 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.
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 remembered by former Prime Ministers, 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.
But I feel I need to make the following quite clear:
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:
Fuck you, you creepy arsehole.
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:
TV 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.
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.
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."
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.
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.
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 her future self.
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 status update:
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.
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.
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.
But in case I get hit by a bus tomorrow, I want to make something clear.
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.
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.
And people have respected her wishes. I haven't seen a single snowflake.
But BuzzFeed are dicks.
In 2012, Stella wrote this:
It doesn't matter how we got like this. Really. Are you asking because you want to know or because you need to?
So I can just imagine how she'd feel about an article Brad Esposito 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.
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.
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 need 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.
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 remembered by former Prime Ministers, 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.
But I feel I need to make the following quite clear:
- 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.
- 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 CSI 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.
- 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.
- Can someone please play Raise Your Glass by P!nk at my funeral. I may be wrong, but it's in all the right ways.
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:
Fuck you, you creepy arsehole.
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:
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.
TV 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.
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.
22 September 2007
Earlier this evening I was pushing from Holloway to Finsbury Park. You see, I was on my way to my nearest Lidl, which is in Finsbury Park, following a tip off from my Mum that in her local store they currently had cat food that my cat can actually eat.
Me and my pussy are very well matched when it comes to food sensitivities.
What I was unaware of before I set off on my journey was that Arsenal were playing at home. And I was trying to get to Lidl at the same time as the crowds were trying to get out of the stadium. Bad timing.
The number 29 bus was going nowhere, so I decided it'd be quicker to get off and push the rest of the way.
This guy walking in the opposite direction to me stopped and pressed himself up against the railing fencing the pedestrians in. I'm used to this reaction from crip-phobes who can't bear the thought of having to share a pavement with a wheelchair user. Like most people who do this, he watched me as I approached.
Usually though, people resume walking once I (the dangerous, terrifying wheelchair user) have passed. I noticed out of the corner of my eye that he didn't. So I looked over my shoulder and he was still staring at me. Obviously at this point I shot him an evil glare. Most gawpers usually take that as their cue to stare at the floor. Not him.
"You're beautiful!" He cried after me.
Which makes the second nutter this week.
First there was the odd, drunk, smelly bloke I met on a number 29 bus coming home from dinner at a couple of friend's house on Wednesday night.
He was asking the usual, boring old "how long have you been in a wheelchair?" crap that all random strangers want to know. Then he said:
"Well, at least you've got a pretty face. If you were single, I'd go out with you."
Obviously, I didn't mention that I am single. I just nodded.
What is it with people thinking that having a pretty face will melt away all access barriers? (He's not the first). Come to think of it - why do only odd ones who think pretty faces remove access barriers think I have a pretty face anyway? Why can't any hot women ever think that?
I'm starting to think the being single is like being unemployed.
You know how the longer you've been unemployed, the lower your chances of finding a job?
I think people look at prospective partners in the same way as employers look at prospective employees.
"Well, they've been on the shelf for a while. Are they up to date with modern techniques and practices?"
Being 28 and having never had a "proper, grown up" relationship I'm starting to feel how I imagine I'd feel if I was still looking for my first job.
"Well, she's never been in this situation before. How can we guarantee she's got the skills to cope? She's never had to use them. Does she even know how to respond to certain situations? Does she know the rules and etiquette?!"
I've had a couple of conversations about this. One person pointed out that "It's also easier to find a new job when you've got one already." A sentiment echoed by another friend when we were having a conversation about polyamory.
"I think polyamory is just unfair... why should some people get hundreds of partners when I can't even find one?"
My friend went on to point out that I'm the only non-poly wheelchair user that she knows. I was pushing over cobblestones at the time, which is about as close as I come these days to intimacy.
Me and my pussy are very well matched when it comes to food sensitivities.
What I was unaware of before I set off on my journey was that Arsenal were playing at home. And I was trying to get to Lidl at the same time as the crowds were trying to get out of the stadium. Bad timing.
The number 29 bus was going nowhere, so I decided it'd be quicker to get off and push the rest of the way.
This guy walking in the opposite direction to me stopped and pressed himself up against the railing fencing the pedestrians in. I'm used to this reaction from crip-phobes who can't bear the thought of having to share a pavement with a wheelchair user. Like most people who do this, he watched me as I approached.
Usually though, people resume walking once I (the dangerous, terrifying wheelchair user) have passed. I noticed out of the corner of my eye that he didn't. So I looked over my shoulder and he was still staring at me. Obviously at this point I shot him an evil glare. Most gawpers usually take that as their cue to stare at the floor. Not him.
"You're beautiful!" He cried after me.
Which makes the second nutter this week.
First there was the odd, drunk, smelly bloke I met on a number 29 bus coming home from dinner at a couple of friend's house on Wednesday night.
He was asking the usual, boring old "how long have you been in a wheelchair?" crap that all random strangers want to know. Then he said:
"Well, at least you've got a pretty face. If you were single, I'd go out with you."
Obviously, I didn't mention that I am single. I just nodded.
What is it with people thinking that having a pretty face will melt away all access barriers? (He's not the first). Come to think of it - why do only odd ones who think pretty faces remove access barriers think I have a pretty face anyway? Why can't any hot women ever think that?
I'm starting to think the being single is like being unemployed.
You know how the longer you've been unemployed, the lower your chances of finding a job?
I think people look at prospective partners in the same way as employers look at prospective employees.
"Well, they've been on the shelf for a while. Are they up to date with modern techniques and practices?"
Being 28 and having never had a "proper, grown up" relationship I'm starting to feel how I imagine I'd feel if I was still looking for my first job.
"Well, she's never been in this situation before. How can we guarantee she's got the skills to cope? She's never had to use them. Does she even know how to respond to certain situations? Does she know the rules and etiquette?!"
I've had a couple of conversations about this. One person pointed out that "It's also easier to find a new job when you've got one already." A sentiment echoed by another friend when we were having a conversation about polyamory.
"I think polyamory is just unfair... why should some people get hundreds of partners when I can't even find one?"
My friend went on to point out that I'm the only non-poly wheelchair user that she knows. I was pushing over cobblestones at the time, which is about as close as I come these days to intimacy.
04 September 2007
I'm finding it hard to adjust to being back in the real world.
I know I was only on a FOCUS project for 6 days... And that was nearly a month ago. But I still haven't quite gotten into the swing of being back in reality.
One of the things I love most about FOCUS is that the staff and other volunteers simply see me as me. They respect me for my knowledge, skills and experience and don't judge me on the basis of my impairment. If you're disabled and reading this I'm sure you can appreciate straight away how far removed such a simple thing is from day-to-day life.
I've been fortunate enough to be able to spend some quality time with other volunteers that were there since the project. LilWatcherGirl and I went to see Harry Potter and the Order of the Phoenix at the IMAX together, for example.
"Right, you hide, I'll hail the bus. When the driver gets the ramp out, appear and get on behind me before the driver has the chance to close the doors!"
Because London buses only have one wheelchair space. As we wandered towards the bus stop we had a little discussion about how we were both going to fit in the one space. Oh, if you can catch a bus without having to have a strategic planning meeting you really don't know what you're missing.
It was coming home from the cinema that night that I really missed being in a FOCUS bubble for the first time. Sure, the project didn't exactly run smoothly (*cough* understatement *cough*) but there were some amazing people there. As LWG and I boarded at the rear ramped door, LWG's OtherArf, being a walkie, boarded at the front door. I heard the driver ask her "Where are they getting off?"
If I wasn't so throughly exhausted (this was a Tuesday, on the Sunday night I'd been up all night with sinus pain, and on the Monday I'd been up all night from taking Sudafed which is kinda like speed) I'd have burst into a screamy rage at him. How dare the driver ask someone else questions about me?
For the record, I don't take sugar.
But, I was too exhausted to fly off the handle. Instead I sat and pondered how much the real world sucks.
The bank holiday weekend was awesome. 4 of us volunteers spent the weekend together in Manchester. I don't really drink much alcohol these days; in fact, so little that I'd kept track of all the alcohol I'd drunk so far this year.
Until the bank holiday. Good times.
Being with a group of FOCUSy types out in the real world is kinda strange, but also very cool.
Being out in the real world I was subjected to the usual rubbish: people patting me sympathetically on the shoulder, people grabbing me and trying to push me, etc, etc. But, I had my bodyguards! Oh yes.
On the Sunday night we were indulging in some dirty street drinking (seeing as none of us could afford bar prices). Being FOCUS folk we all know the FOCUS dance routine to "Shake a Tail Feather" (from The Blues Brothers). And, having had a few drinks we decided that dancing to it on Canal Street would be a wonderful idea.
So, there we were quite happily getting our twist on, minding our own business, dancing away. When some guy decides that he wants to grab the-lady-in-the-wheelchair and start pushing her around. Before I could even start screaming I heard:
"Oi! Fuck off! Do one!"
My bodyguards came to my rescue. Good times. Unfortunately it ruined our dance and destroyed any chance of applause from our audience.
I wish I could take those 3 dirty street drinking scum chums with me wherever I went. Unfortunately 2 live in Manchester and the other in Cambridge. I could've done with them on Friday night when at a Treasure Tones gig some creepy drunk guy decided that I was wonderful. *shudder*
I know I was only on a FOCUS project for 6 days... And that was nearly a month ago. But I still haven't quite gotten into the swing of being back in reality.
One of the things I love most about FOCUS is that the staff and other volunteers simply see me as me. They respect me for my knowledge, skills and experience and don't judge me on the basis of my impairment. If you're disabled and reading this I'm sure you can appreciate straight away how far removed such a simple thing is from day-to-day life.
I've been fortunate enough to be able to spend some quality time with other volunteers that were there since the project. LilWatcherGirl and I went to see Harry Potter and the Order of the Phoenix at the IMAX together, for example.
"Right, you hide, I'll hail the bus. When the driver gets the ramp out, appear and get on behind me before the driver has the chance to close the doors!"
Because London buses only have one wheelchair space. As we wandered towards the bus stop we had a little discussion about how we were both going to fit in the one space. Oh, if you can catch a bus without having to have a strategic planning meeting you really don't know what you're missing.
It was coming home from the cinema that night that I really missed being in a FOCUS bubble for the first time. Sure, the project didn't exactly run smoothly (*cough* understatement *cough*) but there were some amazing people there. As LWG and I boarded at the rear ramped door, LWG's OtherArf, being a walkie, boarded at the front door. I heard the driver ask her "Where are they getting off?"
If I wasn't so throughly exhausted (this was a Tuesday, on the Sunday night I'd been up all night with sinus pain, and on the Monday I'd been up all night from taking Sudafed which is kinda like speed) I'd have burst into a screamy rage at him. How dare the driver ask someone else questions about me?
For the record, I don't take sugar.
But, I was too exhausted to fly off the handle. Instead I sat and pondered how much the real world sucks.
The bank holiday weekend was awesome. 4 of us volunteers spent the weekend together in Manchester. I don't really drink much alcohol these days; in fact, so little that I'd kept track of all the alcohol I'd drunk so far this year.
Until the bank holiday. Good times.
Being with a group of FOCUSy types out in the real world is kinda strange, but also very cool.
Being out in the real world I was subjected to the usual rubbish: people patting me sympathetically on the shoulder, people grabbing me and trying to push me, etc, etc. But, I had my bodyguards! Oh yes.
On the Sunday night we were indulging in some dirty street drinking (seeing as none of us could afford bar prices). Being FOCUS folk we all know the FOCUS dance routine to "Shake a Tail Feather" (from The Blues Brothers). And, having had a few drinks we decided that dancing to it on Canal Street would be a wonderful idea.
So, there we were quite happily getting our twist on, minding our own business, dancing away. When some guy decides that he wants to grab the-lady-in-the-wheelchair and start pushing her around. Before I could even start screaming I heard:
"Oi! Fuck off! Do one!"
My bodyguards came to my rescue. Good times. Unfortunately it ruined our dance and destroyed any chance of applause from our audience.
I wish I could take those 3 dirty street drinking scum chums with me wherever I went. Unfortunately 2 live in Manchester and the other in Cambridge. I could've done with them on Friday night when at a Treasure Tones gig some creepy drunk guy decided that I was wonderful. *shudder*
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