An open letter to my mother

Dear mum,

The nurse from the hospital phoned just as I arrived at your house on Saturday. I spoke to her and she said that your lungs had filled with fluid. She also said that you were being treated with oxygen and diuretics, that it was a common complication that they see all the time, and that we could come if we wanted but we didn't have to. She said there was no need to speed, so I drove sensibly.

In the car on the way to the hospital I was planning all the jokes I was gonna crack when we got there. I was gonna tell you about dad's daft suggestion of phoning for a police escort so we could get away with breaking the speed limit. I explained to him that you'd already completely recovered from pulmonary oedema once already, so I wasn't too concerned.

When we got up to your ward a nurse crouched down in front of me and said "mum's just gone."

I went in to see you. You looked like you were sleeping except for the fact that your eyes were open. But then, of course, sleeping with eyes open isn't uncommon in people with OI, so you really did look kinda like you were asleep.

Dad was horrified that your eyes were open and your head was leaned over to the side. Apparently you'd *just* died, why didn't you wait for me? I never saw you on Saturday and we'd only spoken on the phone for a couple of minutes. Why couldn't you let me say goodbye?

I screamed, and I cried, and I held you. You were still all sweaty from laying on a plastic-covered hospital mattress. You didn't look like an artificially laid out and made up corpse... you were you. Of the stupid things that pop into your head, one of my first thoughts while I was standing beside you was "who is going to fix my trousers with a rip down the arse now?"

Apparently I told the nurse not to pull you by your legs... I don't remember that. I do remember telling her that you hated laying down flat.

I don't think I thanked you enough for coming to London when I had my operation. It meant everything to me having you here. That afternoon when I was in so much pain that I just laid there with tears coming down my cheeks and I asked you to come as close as you could get, that meant the world to me. It was like when I was young and you'd sit with me when I was ill. And yes, all those hours you spent holding my toes when I had a broken leg...

I'm so glad that happened so recently. It means so much.

I keep thinking of things I wanna tell you the next time I talk to you, like how much Betty likes the scratch mat you bought her. And there must be a hundred times I've nearly said "I'll just phone mum and ask her........"

I'm sorry I wasn't around for your last couple of days. I'm sorry that of all the stupid things in this madness that I wanted a normal day. I wanted to go to uni on Friday and have a normal afternoon. I'll regret that for the rest of my life.

I'm sorry I never hugged you more in recent years. I just wanted to make up for it all and climb in bed with your lifeless body and never let go.

But mostly I'm sorry that all you've ever seen me do is fail. Everyone keeps saying what a wonderful job you did of raising me - and they're right; you were the best mum anyone could want. It must've been hard seeing me have the opportunities you never had - specifically the fact that I got an education; only for me to throw them away by not trying hard enough. I'm sorry I didn't work harder at uni to do better than a 2:2, because I know that education is something you wanted me to have.

And in every other area of life, you never got to see me be the person I hope I will be. I tried swimming and failed at that. I tried comedy and had to give that up due to illness. I wish my late 20s hadn't been sucked away by illness, I might not still be such a loser.

You never got to see me get married (well "enter into a civil partnership"), you never got to meet the grandchildren I hope you'll have. How am I going to bring up kids without you to phone every 10 minutes for advice? And of course, you never got to see me have a career. You never even got to see me finish the MA I should've completed by now if it wasn't for my sinuses.

I hope one day I can be the daughter you deserved.

I love you more than I ever told you. I wish I had told you.

Lisa

P.S. You couldn't have waited a few years until the DDA filtered through to the funeral industry, could you? I'm having a hell of a job finding a suitably funereal accessible vehicle for me and dad.

So, illness got the better of me, and I never did finish NaBloPoMo. Oh well.

On Nov 25th I finally got the sinus surgery I've been waiting for for about 3 years. Yay!

Except 9 days later, my mother had a heart attack. She's still in hospital in Colchester.

My body is trying to divert all its energy and resources in the direction of my nose for healing purposes, while I'm trying to use all my energy in driving up and down the A12.

Needless to say that I think the biggest loser in my body's energy war is me, and I'm knackered.

NaBloPoMo 10: Disabled zombies?

Death is a disability, not a superpower. It's hard to run with a cold, let alone the most debilitating malady of them all.

NaBloPoMo 9

Ill. Still.

NaBloPoMo 8

I'm really fed up with being ill now. And I've run out of Tunes.

NaBloPoMo 7

After a couple of days of feeling a little better, today I feel rotten again.

NaBloPoMo 6: The Crip Eating Monster

Today I ate crips. No, really.

Despite feeling like death not even warmed up, I dragged myself down to the Royal National Throat Nose and Ear Hospital to see the surgeon that's going to be operating on my nose and sinuses.

The majority of staff at the hospital couldn't tell their arses from their elbows if they were clearly labelled. Fortunately I do have some faith in the surgeon, even if I'm concerned about whether or not the other hospital staff will be able to get me to the theatre on time. Or at all. He laughed, and then apologised when I told him about my pre-assessment telephone interview.

"What is your exercise tolerance?"

"My what?"

"Your exercise tolerance. Can you walk long distances?"

"No. I'm a wheelchair user. But I can push long distances."

Then about 10 mins later:

"What drugs are you on?"

"About 15 kinds. Where do you want me to start?"

"With the most important."

"They're all important. I'll start with the ones relevant to the condition I'm being operated on for."

[4 drugs later]

Her: "OK, just one more."

Me: "Well, I've still got about 10 different ones left."

"What do you take for your muscles?"

"What?"

"What do you take for your mobility."

"Erm... nothing..."

*headdesk*

She had to hang up, check with a supervisor if she needed me to carry on reading the rest of my drugs list, and call back. It just got better.

"You need an adult to bring you in."

"Why? I know I'll need an adult to take me home because of the anaesthetic, but why to bring me in?"

"It is because you are a wheelchair user."

"What? I'm a big grown up 29 year old, I can get myself to the hospital."

"You live alone!?!?!?"

So my surgeon sent me up to pre-assessment in person to redo the interview on the basis that my info was written down by an idiot.

I'm still all viral and achy and tired and bleurgh. By the time I got home I just wanted to sleep. But I was starving and too exhausted and utterly spoonless to cook, so I went to grab some grub from the café round the corner. I was so hungry that I couldn't even face the 5 minute wait for a jacket potato to be delivered to my table, so I turned to the crisps rack behind me...

When I noticed they were selling Crips

I had to.

There are some fantastic quotes on their site... "Crips are everywhere!" being possibly my personal favourite.

Don't understand the whole animal advertising thing though. My Sea Salt & Balsamic Vinegar Crips had a picture of 2 dogs on the packet. Neither of them were in a doggie wheelchair. False advertising, that's what it is. I want to know what's inside my packet of fake crisps from looking at the packet. Yes, Crips should be advertised by real crips.

NaBloPoMo 5

Still feeling a bit foggy, but my virus appears to be subsiding slightly.

On Sunday fearing I may have tonsillitis I dragged myself to the NHS Walk-in Centre at Charing Cross Hospital, where they've got a Walk-in Centre, a Minor Injuries Unit and an A&E in one. You register at reception, get seen by a triage nurse, and they decide whether or not you should be seen as a walk-in patient, a minor injuries patient or an A&E patient.

Despite only having suspected tonsillitis the triage nurse put me down as an A&E patient. I'm assuming that was because of the wheelchair. I wanted to hit my head against things - there's an A&E dept within walking distance of my flat. If I wanted to go to A&E over a sore throat I'd have gone there, instead of dragging myself halfway across London, getting lost in Hammersmith due to the hospital not being signposted and having to resort to calling my mother in Clacton to get her to look up a map online and give me directions to the hospital.

Grrr.

So, anyway, I was seen within a matter of minutes. I wish my waits in A&E had been that short during my childhood when I could've been eligible for some frequent visitor reward scheme on account of breaking my arms all the damn time.

I was seen by a nurse who only cared about why I used a wheelchair.

"My throat hurts and my nose is bleeding about 5 times a day. I've got chronic sinusitis and am on the waiting list for surgery."

"So, why do you use a wheelchair?"

"Osteogenesis Imperfecta. But, sinusitis! Nose bleeds!"

"How do you spell that?"

"O-S-T-E-O-G-E-N-E-S-I-S I-M-P-E-R-F-E-C-T-A. But, sinusitis! Nose bleeds!"

"Is that like a spinal thing?"

"Literally translated from Latin it means 'imperfect bone formation'. Sinusitis! Nose bleeds!"

"Have you had it long?"

"What? The sinusitis or the OI?"

"OI."

"Erm... since birth? Sinusitis! Nose bleeds!"

Meeting a medical professional more interested in OI than what I actually went in for is nothing new. Meeting an A&E nurse who's never met someone with OI is more shocking. OI is pretty rare, but OIers do make up a fair amount of the traffic that goes through A&E depts, what with the frequently breaking bones thing. I spent so much time in X-ray as a child that two of the first words I learned to read were "danger" and "radiation"!

After all that, he finally looked down my throat, saw no pus, decided I just had a virus and sent me home with the instruction to drink lots of hot drinks.

Like I need to be told to drink copious amounts of tea.

P.S. Yay! Obama! Roll on January 20th.

NaBloPoMo 4

Still got cotton wool for brains. Let's hope American voters are capable of thinking more clearly than me.

NaBloPoMo 3

Still ill. This could be a very boring month of daily updates.

NaBloPoMo 2

Still ill.

NaBloPoMo 1

I was thinking of doing NaBloPoMo, except illness stole my brain and replaced it with cotton wool.

Big Brother is over for another year. Hurrah! It is now safe to tune in to channel 4 and E4 once again.

This series there were not just one, but 2 disabled housemates. Prior to this series they've had only one disabled contestant, Pete Bennett. He won.

Both Darnell and Mikey survived the entire series (I make it sound like that episode of Doctor Who, don't I?) and made it in to the final.

I also understand that the first American BB was won by an amputee.

TV companies have always been hesitant about putting disabled people on TV. Surely if nothing else, BB proves that viewers *like* having disabled people on their screens and *want* to have disabled people on their screens.

After all, if viewers didn't want to see the disabled contestants, they'd have been voted off ages ago.

The motivations for wanting to see disabled people on screen is almost certainly because they can get away with staring at someone different, which they get embarrassed about doing in real life. Or they end up having an accident. I just love it when people get so engrossed at staring at me, the lady in the wheelchair, crossing the road that they forget to look right and left themselves before stepping into traffic. But Big Brother means they can gawp at us from the safety of their sofa, without the risk of getting hit by a car.

But, motivation is irrelevant. The public have voted that they want to see disabled people on TV. Isn't it time the TV companies paid attention?

Of course, TV companies aren't paying attention. I understand from a friend that not one American TV station is covering the Paralympics. NBC even branded themselves "The Olympic Broadcaster" (or something like that), but they're not showing the Paralympics. Even though at the end of day 2, the US is at the top of the medal table. You would think disabled and non-disabled Americans alike would want to take pride in their success, especially seeing as so far their Paralympians are doing better than their Olympians did.

Here in the UK we're doing rather better. We've got six hours coverage a day via the digital "red button" option on our tellys. Then every evening there's a highlights show on one of the main channels. Those of you in countries where you're unable to watch the games on your TV might be interested to know that the torrent site UKNova is uploading the BBC's nightly highlights programme. Don't bother to ask me for an invite code though. The site doesn't do them. You just have to keep hitting the "signup" page until an account "vacancy" becomes available.

The Beeb's Paralympic website is also mostly excellent (some of the journalism is rather sloppy; for instance apparently Darren Kenny "suffers from" cerebral palsy. Even though he's just won Paralympic gold). But the video files are only available to those connecting to the net in the UK.

When Big Brother started in 2000 I never, ever imagined I'd say that there were lessons to be learned from it. Even more unbelievable is that the lesson that can be learned is that viewers want to see disabled people on TV.

NBC, the so-called "Olympic Broadcaster" could certainly learn a lot from it.

Disablism Vs. Ableism

We grow, we evolve, our thought processes change. Since writing this post in 2008 (this emboldened intro was written in 2014) I've thought more about quite why the term "ableism" bothers me so. In fact, one of the comments on this post was important in developing my own chain of thought. If you're looking for an exploration of some of the faults with the term "ableism" then you'll find this post written in 2013 to be far better thought out.

It's BADD again. I don't mean that things are bad again. Although today kinda has been -- I should have been at a cult film conference, instead I spent the day sitting at home waiting for an engineer from Virgin to come and fix my TV and phone.

Blogging Against Disablism Day has come round again. I didn't participate last year, so my last BADD entry was in 2006.

There are a lot of things I hate; doing dishes, mornings, people with gross fungal toenails who wear sandals (they make me feel sick -- seriously -- treat them or hide them), the cat peeing in my bed, disablism (obviously), and there is a word I really hate: Ableism.

Those of you who don't know, "ableism" is the American/Australian word for "disablism". And I think it's ludicrous.

For one thing it reminds me of those ridiculously over-PC words like "handicapable" or "differently abled", which are only used by people who are trying to pretend that disability doesn't exist.

Secondly, it's unclear what it actually means. If "disablism" is discriminating against people for being disabled, surely "ableism" is discriminating against people for being able? In season three, episode 18 of My Name Is Earl, Earl and Randy go into a "wheelchair bar". In this bar there are no chairs, so it's obviously discriminating against people who are able to walk thus haven't brought their own seat with them. That's what I would call "ableism". In reality, in the UK it is illegal to discriminate against someone for being disabled, but it is legal to discriminate against someone for not being disabled. So for example, it is legal to advertise a job as being for disabled applicants only. This I would also call "ableism" (though I don't think this is wrong).

Someone on an Internet message board I use started a discussion on ableism. She was Australian, and angered that she had tried to introduce a non-disabled person to the concept of ableism. The non-disabled person laughed at such a ludicrous term.

Obviously I did too, because it's a silly word. But this person laughed, because she didn't believe that such a thing existed. I wonder if she would have still laughed if Australians used the more accurately descriptive word "disablism". On that thread several people mentioned that they struggle to get non-disabled people to understand concepts of ableism. I never have any trouble getting people to understand disablism; could this be because of the language I use?

I believe that calling disablism "ableism" is akin to calling racism "whiteism". I've heard some people disagree, and argue that grammatically "ableism" is more correct. I fail to see their point. If "racism" is discrimination on the grounds of race, surely it is logical that the word for discrimination on the grounds of disability would be "disablism"? I shall await the barrage of comments from people who have studied the English language in greater depth than me pointing out why I'm an idiot.

So my appeal for this Blogging Against Disablism Day is for us all to call disablism what it really is. If we are using a word like "ableism" which tries to pretend that disability doesn't exist, how can we fight against discrimination on the basis of disability? If we're trying to pretend that disability doesn't exist, then how can discrimination on the basis of it exist? "Sexism", "racism" and "homophobia" are used by English speakers the whole world over. How are we supposed to expect non-disableds to fully understand concepts of disablism if we can't even come up with a unified word for it?

Say it with me people: Diss-A-Buh-Lism. Then go and read what my cat had to say for BADD.

Edit May 8th: Thanks for all the comments on this post. I was especially interested by the thoughtful comment by maudite entendante in which she said:

Highly Obvious to me that the "abl-" in "ableism" is just the prefix form of "ability" (because, really, "abilityism" just isn't a possible English word), and it means "discrimination based on [amount or type or category of] ability"

Looking at the term "ableism" in that context makes it clear that "ableism" is derived from the medical model of disability - the idea that a disability is something we have, that we are disabled by a lack of ability.

I'm a believer in the social model of disability, the idea that we are disabled by barriers which prevent us from living as full and equal citizens.

The term "disablism" doesn't have such obvious medical model roots. Another reason why I think this term is superior.

"There were commodes as well."

Using a commode in front of half of Central London?

I think I'd rather wet myself...

I am getting really pissed off with, well... Piss.

I know I only go in to university one day a week so I shouldn't let it bother me this much. But, yuck.

There's a man who uses the disabled toilet in the building I have lectures in and wees *everywhere*. And I know it's a bloke because women aren't anatomically designed to spray that liberally.

Some days the room is more like a swimming pool. Except it smells more like wee and less like bleach of course.

I know that some people live with incontinence and sometimes accidents happen. But, seriously... clean it up! Have a little respect for your fellow humans.

One day I'm going to slip over in the wee and wind up on the floor, with a broken leg, covered in his urine. You'd hope that the police could test the DNA on the wee all over my clothes and charge him with some kind of assault for setting off a chain of events which left me injured. But that doesn't even happen in CSI so it's certainly not going to happen in real life.

And it's not just the floor... it's the seat too! I know most women squat rather than sit when faced with a grim loo, but some of us aren't physically capable of that. If I try squatting I just fall down. And land in his pee. Lovely.

So, I decide to find a safer, less vile toilet. What do you do when leaving a toilet? Turn the door handle. And, yup, that's always wet too.

"I would've gotten away with it too if it wasn't for those pesky disabled people!"

A couple of months ago I blogged (very briefly) about Katie Thorpe.

I've been offline for the past few days. I haven't been doing anything interesting... The cat and I took up Synchronised Sneezing, I've read a few essays about Buffy, but mostly I've just been sitting on the sofa watching CSI (hey, I'm doing a Masters in Cult Film & TV... watching CSI is therefore technically studying).

Not having been staring into my computer screen means I've not been keeping up with the news... I rarely watch it on TV or listen to it on the radio, I get all my news from online sources.

So, I was both shcoked and pleased to switch on my computer this morning to find that I had an Email from Scope. Shocked because they're not my most favourite of charities so I was stunned to find myself on one of their mailing lists. But pleased because the Email was the first time I'd heard the news that Katie Thorpe has been spared uneccessary surgery. A quote from Katie's mother in that article that would be funny if it wasn't so disturbing:

"People who don't know Katie, who don't fully understand our situation have actually been swayed by the minority of the disability rights organisations."

Damn those pesky disabled people fighting for the right to not be needlessly mutilated.

In recent months I've started to notice something quite chilling going on. All minority groups have their hate-filled opressors, and disabled people have more than most. But, recently, the people shouting the loudest about why disabled people shouldn't be allowed human rights are the parents of disabled children!

I read an article, or perhaps it was a 'letters to the editor' type thing by a parent, or parents of autistic children. They were basically claiming that the National Autistic Society is bad and wrong and fails to support "real" autistic people. Why? Because they employ autistic people. According to the article people with autism know nothing about it. They claimed that the only people that truly understand autism are the parents, and people with autism have no right to claim that they do know anything about it. I can't remember where I read this, but, if it rings a bell and you know where I can find this story, please comment.

That a parent can claim that their children shouldn't have the right to speak out for themselves, or that their children shouldn't have the right to avoid unneccesary surgery simply beggars belief.

Fortunately, for once, the disabled people are coming out on top.

2007 started with Ashley X hitting the news. This spurned several wanna-copycat cases, like Katie.

Hopefully 2008 beginning with the news that Katie is safe will bring a better year for young disabled girls everywhere.