09 April 2013
But I can understand why there are some people feeling very relieved right now.
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.
For 23 years she hasn't been able to hurt me. But she still holds power over me.
When the Panorama 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.
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.
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.
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 why.
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.
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.
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.
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.
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?
Don't Hate, Donate is a brilliant idea. Instead of sinking to Thatcher's level and celebrating death; why not donate to a cause that supports her victims?
04 April 2013
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.
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.
They may not have directly used the words "Lisa Egan should not be here," but it was what I inferred from their statements.
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.
It's a powerful statement that haunts you; knowing that people think you shouldn't be here.
I remember a very long time ago seeing a mother on the news with her young child 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.
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.
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.
The most hurtful thing has got to be that these 17 children have been singled out by someone at the heart of government, the Chancellor, 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.
When I've read in the press that parents on benefits shouldn't have kids I knew they weren't talking about me directly, 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.
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.
06 November 2012
Firstly to Eleanor 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 Goldfish and DavidG 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?"
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.
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 increased incidence of mental health problems and the rates of HIV. With that in mind, there being 3 disabled people on the list is a start, but it's not enough.
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 important to be out. 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.
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.
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. In 2008 70% of people asked told The Observer that they wouldn't shag a cripple 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 CSI and wishing Sara Sidle were mine.
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 banned a man from having sex because he had a low IQ 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.
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. Direct Payments and Personal Budgets 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.
Such grave issues make the lack of physical access to gay bars and clubs seem to pale into insignificance. 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. Improving visibility of gay people improves attitudes towards gay people; 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.
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.
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.
23 October 2012
The BBC is holding two inquiries 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.
Peter Rippon, who was responsible for cutting the Newsnight exposé, has stepped aside. Over the last 36 hours I've read several things along the lines of:
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..
The thing is: He unwittingly might have done.
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.
But almost 3 weeks after the allegation floodgates opened the police turned the assessment into an actual criminal investigation because the allegations implicated Savile's fellow paedophiles that are still alive.
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.
Rippon's disgusting attitude towards women and belief that paedophilia isn't "the worst kind of sexual offence" 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.
30 July 2012
Getting told that your physical condition is psychosomatic is disturbingly common. 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.
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 stapes is common in osteogenesis imperfecta my GP sent me to the Royal National Throat, Nose and Ear Hospital to get my hearing looked out.
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: Auditory Processing Disorder. 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'.
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.
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.
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 @BendyGirl 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."
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.
So I went to see my GP and he referred me to maxillofacial. The referral was rejected and my GP was told to send me to the Facial Pain Clinic at the Eastman. He did.
So I went to the Eastman on Wednesday expecting an examination of my jaw, some x-rays and general usual hospital appointmentness.
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.1
I go to a lot 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.
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.
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.
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.
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.
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.
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.
I should've foreseen what my diagnosis was going to be when I explained that because of my hypermobile 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.
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.
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.)
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 sometimes people have something wrong with their jaw.
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.
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.
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...
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.
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.
I'm also supposed to get some exercise. You know; like the miles I push and the swimming I do. I may have been priced out of going to the gym but I don't spend every moment of the day gawping open-mouthed at the telly. That noise you can hear? It's logic turning in its grave.
I love the NHS. As I've explained before a really important thing is giving feedback because that's how you help something you love function better. So hear this NHS:
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 all 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.
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.
1 Thanks to Robin for the maths help with that one. @Uppo1963, @latentexistence, @PatParslow, and @indigojo_uk all answered my question also; but Robin got there first.
06 June 2012
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 Holborn Oasis and the Oasis blurb mentioned the access at that pool.
So I was still none the wiser about access at Kenwood. Next I did a Google image search for the pond 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.
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?
After looking at this map I decided the most sensible place to park my car would be on Millfield Lane in Highgate.
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 signs at all the entrances and assumed most of them had maps on them. I assumed wrong.
"Never mind," I thought. "Google 'Hampstead Heath map' on your phone."
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.
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.
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.
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.
Making things physically accessible is massively important. But something can never be truly accessible unless you provide information 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.
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".
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:
The quality of the paving is truly abysmal:
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.
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!
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 City of London website. 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.
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.
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 anti-fog stuff 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.
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 tapper 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.
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.
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.
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.
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.
01 May 2012
I was eleven when I went to Disneyworld: A compulsory right-of-passage for every disabled child in the developed world. It was the first time I’d ever left the UK, so to say I was excited would be an understatement.
On our first morning there we took a cab from the hotel to the theme park. In the pickup/drop off zone, before entering the gates of Disneyworld itself, I saw the most incredible thing I’d ever seen in my life thus far: A wheelchair accessible bus.
I had never travelled by bus. I’d never seen such a thing as an accessible bus. It hadn’t even occurred to me that they might exist. The fact that mobility impaired people could use public transport in Orlando genuinely rocked my world. Of all the delights that Disney has to offer a child; nothing made me scream “Mum! Dad! Nan! Look at that!” quite as loudly as that bus. It was just a bus; such a mundane mode of transport to the majority of people. But to me it represented such freedom and inclusion that I couldn’t quite believe my eyes.
I lived in a miserable little Essex village at the time. About once a day you could get a bus to the nearest small town and I think you could occasionally get a bus to Cambridge. When I say “you could”; that obviously didn’t include me. The village did have a train station, but unsurprisingly that wasn’t wheelchair accessible.
I was trapped in a village where I had no friends. The local high school was (surprise surprise) not wheelchair accessible so I had to be taxied to a school near Cambridge. This meant all my friends lived about 20 miles from me. Like every 11 year old I wanted to go shopping on Saturdays with my peers; I never could. This was why catching sight of an accessible bus meant everything to me. It held the optimism of a world that I could be a part of.
It was 10 whole years later that I travelled by bus for the first time; and that was in America too. The summer before going to university I decided to spend a month backpacking around the US. My first port of call was Los Angeles and on my first day I caught the 156 from North Hollywood down to Santa Monica Boulevard where I changed onto the 4 down to the beachfront in Santa Monica. So momentous it was that I’ll probably remember the numbers of those buses well into old age; long after I’ve become unable to recall my own name.
Now I travel by bus all the time I’d recognise that journey for what it is: Slow, boring, hot, and full of people that smell terrible. But at the time in August 2000 I felt so free and included. I think you probably need to have been excluded from bus travel for 21 years to realise how liberating it is to be able to catch one for the first time.
A month later I moved to London (well, Uxbridge, but it’s within Greater London) to go to university. The U3 and U4 routes going from the Brunel campus to Uxbridge town centre were accessible, but that was it. I couldn’t get the 207 to Ealing or the 607 to Shepherd’s Bush. Of course, being able to travel by bus was still so new to me that I was bloomin’ grateful for the couple of routes I could use.
The picture was far worse in Central London. When I first moved to inside the M25 there were no accessible buses in the centre of town, the majority of routes around the West End were those nightmare Routemasters. During the day, anyway: Most companies put accessible buses on their night bus routes and it always struck me as slightly bizarre that London transport was only properly accessible between midnight and 5am; like disabled people are the new vampires.
Thanks to the Mayor at the time - Livingstone - inaccessible buses were gradually phased out over the next 5 years. London waved farewell to its last inaccessible buses, the Routemasters running on route 159, in December 2005. In 2012 inaccessible buses still make up the majority of bus company stock around the country. Every time I venture out of the confines of London I find myself grateful to Ken for London’s 100% accessible bus network.
Sadly since he was replaced by BoJo in 2008 we’ve seen London’s most accessible vehicles – the Bendy Buses – taken off the road. Many prefer double deckers for taking up less road space, but London’s wheelchair users miss those Mercedes Citaros dearly. Even with the fact that on the early models the wheelchair ramp would jam if the driver tried retracting it while the bus was still ‘kneeling’. I was once the reason for the breaking-down of three consecutive 453s outside Old Kent Road Tesco’s…
I was also 21 the first time I travelled on The Tube. Most non-disabled people probably think it sounds bizarre to be having all these public transport-related firsts in your twenties. Just like the buses; I also got my first taste of travelling on underground trains in Los Angeles. Unlike our Tube the Red Line there is fully accessible. Even if a little scary because I’d seen Volcano and I kept expecting the train to fill with lava.
Ken may have abolished the inaccessible bus, but despite his good work the majority of tube stations remain inaccessible. Oh to live in LA. And not just for the weather.
In 2006 Livingstone’s administration promised that one third of London’s tube stations would be accessible by 2013. You can’t begin to imagine how much this thrilled me. At the time my nearest accessible tube stations were Westminster, Waterloo or Caledonian Road. All a bus ride from where I’d set up home in Camden. So I never used the tube. The prospect of being able to use one in every 3 tube stations meant I could get to most places in London by getting the tube to a station or two away from my destination and pushing in my wheelchair the rest of the way. I could make it across London in almost the same time frame as someone without a mobility impairment whereas it takes 2 to 3 times as long to make a parallel journey by bus.
Livingstone didn’t retain his seat in 2008 though. Johnson quietly cancelled access upgrades throwing away £20 million of taxpayer's money in the process. What you can’t really put a figure on is all the disabled people who can’t move freely around the city: How many people can’t go for jobs because the return journey to work would be in excess of 4 hours by bus when it’s a 1.5 hour return journey for a non-disabled person by tube? How much tourism revenue does London lose out on because there are no accessible stations in the West End? What about the emotional and social costs for people who are isolated in the suburbs?
If anyone's thinking of commenting with "but he had to cancel the upgrades! We ran out of money!" You can save your little fingers the trouble: Johnson managed to find the cash to fund his pet projects. He spent £1.4m per vehicle on the new Routemasters. A standard double decker is £190,000. It wasn't that he couldn't afford the upgrades on the Tube; he just doesn't care about access.
I am completely opposed to the cuts to benefits and public services. Most people of a similar inclination to me are also opposed to the Olympics and feel it’s unacceptable for the taxpayer to be spending billions on a fortnight long party when disabled people are being told that they’re no longer allowed to use the toilet in the night.
I don’t want anything to do with the games. I’m planning on spending a fortnight barricaded in my flat with a stockpile of food and DVD box sets. But I will never begrudge the games coming to town because the only tube access upgrades Johnson didn’t cancel were the ones essential to the Olympic strategy. The games leave behind a legacy of improved access to the tube and I will forever be grateful for that.
Transport for All published this table assessing the accessible transport plans of the 4 leading Mayoral candidates. Great progress towards a fully inclusive transport network was made under Livingstone; we then saw regression under Johnson. If we want to start progressing again, we need Johnson out of office. He doesn’t propose to meet a single one of Transport for All’s targets.
This isn’t just an issue for those who are currently disabled. Around one in 5 people have some kind of impairment. The figures are skewed by age as the majority of older people have some kind of age-related condition. If you want the tube to be fully accessible by the time your mobility begins declining then you need to vote for improved access to the tube now. Even if you’re convinced that you’re so healthy that you will still be running marathons when you’re 101; there’s a good chance that at some point in your life you’ll break your ankle playing football and be on crutches for 6 weeks. Just bear that probability in mind if you're thinking of voting Johnson because "he's a right laugh!"
I can’t stand the Labour party in its current state. They’re the ones who kick-started the horrific welfare reform by introducing Employment and Support Allowance in 2008. I have no confidence in the current Labour party leadership: I wouldn't trust Ed Miliband to run a proverbial in a brewery, never mind a country. Labour have moved too far to the right for my liking, though sadly I have to concede that out of all the main parties; they are the lesser of three evils. If a General Election were called tomorrow I’d vote Green without hesitation.
It saddens me that Ken rejoined Labour after serving his first term as London Mayor as an independent candidate. I would feel much happier putting my mark next to his name if he weren’t affiliated with a party I have no love for.
But put my mark next to his name I shall. Like I said at the start: His transport policies changed my life. At least now my second nearest tube station is accessible, even if the closest one to my home isn’t.
The post is something of a "two birds with one stone" job. Today is Blogging Against Disablism Day and London goes to the polls on Thursday. I think the word "disablism" does what it says on the tin and clearly a transport system which has wheelchair access at less than one in three stations is a transport system that discriminates against disabled people. So combining the 2 I'm blogging to appeal to Londoners to vote for a candidate that'll make the public transport system a little less disablist.
A couple of weeks ago I got a "Back Boris" taxi receipt. If he hadn't cancelled tube access upgrades I wouldn't have needed a cab.
17 April 2012
Choose and book can go fuck themselves. Seriously. That's now 2 hospital referrals they've rejected for me. Budget hoarding bastards.— Lisa Egan (@lisybabe) April 17, 2012
Last time I had to write a fucking essay to get them to accept a gastro referral. If a GP says a patient needs to see a specialist: They do!— Lisa Egan (@lisybabe) April 17, 2012
Choose and book's job is to allow patients to choose the hospital they want to go to and book an appt. Not reject referrals.— Lisa Egan (@lisybabe) April 17, 2012
I read an article about the NHS doing this to save money, and now I can't find it. My Google fu is getting worse.— Lisa Egan (@lisybabe) April 17, 2012
And you know what else is getting worse? My fucking jaw! Which is precisely why my GP referred me to a specialist.— Lisa Egan (@lisybabe) April 17, 2012
29 March 2012
and I didn't speak out because I wasn't disabled.
Then they came for the NHS,
and I didn't speak out because I wasn't sick.
Then they came for the grannies,
and I didn't speak out because I wasn't old.
Then they came for my pasties,
and suddenly I gave a crap.
18 March 2012
On Wednesday I had a an appointment at a specialist hospital. The clinic in question I was attending that morning is totally unique, there is only that one in the whole country.
I got all this care on the NHS. Without question I wouldn't still be kicking around were it not for the care our health service provides.
Because I depend on the NHS so much, last week I also felt the need to go to a couple of "save our NHS" thingies. Unfortunately with so many of the services I depend on being under threat, going protesting is part of a fairly normal week now too. Rather ironically I couldn't go to the "hands around St Thomas'" vigil because I was sitting in a different hospital having medical implements shoved up my nose.
I've been one of the NHS's most loyal customers most of my life. Growing up with brittle bones I spent so much of my childhood waiting for x-rays that I could spell "danger" and "radiation" from reading the signs on the door at about the same age that most of my peers were getting to grips with "cat" and "dog". During my teens and early 20s I used the NHS much less, though still a bit more than Joe Average. From my mid-twenties onwards my life has been this thrill-o-rama of hospital appointments and increasingly long prescriptions: Some of my current health problems are related to my osteogenesis and some are not. Then there's those that are not really osteogenesis-related, but OI exacerbates them. I'm basically falling apart.
I know of people who are in favour of these reforms who've been mystified by the fact that I'm opposed to the bill but acknowledge stuff like this. It's quite simple really: I think that when you care passionately for something it's important to critically assess its failings as well as its achievements. Acknowledging that something could be better doesn't mean you want to see it dismantled.
I care passionately about my car. Because of my impaired mobility I need it for most excursions out of my flat. Acknowledging that the heating doesn't work properly and that I wish the heating worked better doesn't mean I want my car to be shoved in a crusher.
I care passionately about the NHS too. I need it to stay alive. Acknowledging that it often fails groups of people doesn't mean I want the NHS dismantled. I want to see the problems fixed, just like I wish Peugeot would fix my car's heating so it doesn't get progressively cooler the faster my car is going.
The thing is: The NHS can't fix their problems until they know that they exist, and where they exist. Just like Peugeot can't fix my car until they find where the fault actually is. Not being a petrol head I can't run diagnostics on my car to find the cause of the problem, but I can help the NHS find problems by writing a complaint when I encounter a useless doctor. Evidence like the aforementioned stuff on elderly care, or Mencap's work on people with learning difficulties getting failed by the NHS all help the NHS to identify faults so they can be fixed. Suing over clinical errors was a way of not only getting compensation for injuries incurred, but it was yet another way of providing feedback over where faults lie. The Legal Aid Bill puts that in jeopardy.
And quite simply there's the fact that the Health and Social Care Bill does nothing to improve the care received by the demographics currently failed by the NHS. If anything you can bet that such patients will receive even worse care under a more competitive system.
Another one of the NHS's big issues is waiting lists. Last week my GP referred me to maxillofacial because I need to see someone about my right temporomandibular joint. I need to see someone about it now, not in four months time. At this precise moment my jaw is hurting so much that the pain travels right the way around to the base of my skull. Not only do these reforms fail to address the issue of waiting lists, if anything they'll make matters worse.
When Lansley and co get on the defensive about the reforms they point out that Labour started the process of outsourcing to private providers. (Which is true, but it doesn't mean they have to keep up the practice.) Because it's been happening for a few years I've had a couple of experiences and know first-hand that it increases, rather than decreases, wait times.
Three years ago an orthopaedic surgeon sent me to have my knackered ankle MRIed. I was given an appointment to have it done six weeks later. Two weeks before the appointment I got a letter telling me that my appointment had been cancelled and instead I was going to be having my MRI at a private hospital because they were using private providers to cut down their waiting lists. So did this mean that I had my MRI sooner than the two further weeks I had left to wait? Of course not. Want to know how long I did wait? 10 months. By the time my ankle was finally MRIed it was a year since the consultant ordered it.
Once upon a time orthotists actually made orthotics. As a child I had countless splints made while I waited. Now all orthotists do is take a mould of the body part to be supported and send the mould to a private provider to make the product. The same orthopod that ordered the MRI also ordered orthoses to be made for my shoes. The ones I'm waiting for now have been sent back to the factory three times since they were first made, because the private company can't follow simple instructions. It's been about two years since I went back to the orthotist because the first pair had worn out, so can someone please explain to me how a two-year wait can possibly be justified when they could actually be made on the spot?
I'm really not sure I can face the prospect of waiting a year or two to get my jaw seen to.
Outsourcing to private providers doesn't just result in excessive delays and headaches from where you kept head-butting the wall in frustration; the consequences can be far graver.
The government want GPs to handle budgets taking that responsibility out of the hands of the PCT's. When my GP makes judgements about whether or not I need to see a maxillofacial consultant I want him to make that decision based on clinical need, not budgetary concerns. (Additionally there's the fact that GPs are so untrustworthy according to the government that they can't be allowed to make judgements on someone's fitness for work: That's the government's defence for why they "need" to use Atos). I'd rather my doctor spend his time doctoring, leaving the accountants at the PCT's to do the accounting. If GPs don't want to spend their time dealing with budgets they're going to need to employ the bureaucrats who've just had a severance package from their PCT which is a waste of taxpayers money. And if there's one thing this government like to bang on about: It's taxpayers getting value for their money.
But the big, big, BIG problem with these reforms is around the role of the Secretary of State. Initially the bill removed the obligation on the Secretary of State to provide a National Health Service. This would have been the end of the National Health Service that is accessible to all regardless of ability to pay. Thousands of amendments later the bill now only greatly reduces that obligation, rather than removing it entirely. But it's still likely to see people like me with many health problems, and no money, getting absolutely shafted once the obligation to provide an NHS has been cut back.
The government keep insisting that the reforms aren't about "privatising" the NHS. Yet we keep hearing about more and more services getting outsourced: And the bill hasn't even passed yet! Though ever increasing outsourcing isn't really surprising when you look at the list of politicians with ties to private healthcare companies. This is all despite the fact that patient care is worse under private providers (I refer you back to my own 2 experiences of outsourced "care") and our current system is more cost-effective. It's worth noting that that last linked article is not only from The Torygraph, but the writer freely admits that he has no ideological opposition to breaking up the NHS if a cheaper way of providing care could be found.
Nye Bevan famously said "the NHS will last as long as there are folks left with the faith the fight for it." I'm deeply worried that most people in Britain have become so apathetic and/or cruel (they let the horrific Welfare Reform Bill pass…) that there are no longer enough people with enough faith to keep this world leading, value-for-money, health service alive.
What can you do? There are 2 petitions to get the bill delayed until the government have published the risk register. One is from Avaaz, the other from 38 Degrees. You could also come to Parliament Square this afternoon, but you might want to be aware that yesterday's demo was just a tad over-policed.
♫ = Andrew Lansley Rap
08 March 2012
I've read so many posts talking about how women are hardest hit by the current government cuts. Which isn't entirely true. It's something I've ranted about a bit before. Yes, non-disabled women are more affected by cuts than non-disabled men. But then disabled men are harder hit than non-disabled women, leaving disabled women right at the bottom of the shit heap. No-one is talking about this despite the fact that around 18% of the population have some kind of impairment. Roughly one in 5 women are being blanked by today's discussions.
I read a piece about how feminism doesn't represent working class women because all feminists are intelligent and articulate and working class women aren't. So does that mean I'm not intelligent or that I'm not working class? Which part of me must be erased so I fit neatly into what I'm supposed to be? My only pretension to being middle class is that I occasionally eat houmous.
My class and my intelligence are both affected by my impairments. I've always had impaired mobility but until I was 26 I was perfectly healthy; I just had a crappy skeleton. Had I not become chronically ill I'd probably have socially mobilised my way into middle classedness by now. Instead I live on benefits, in a council flat, and buy my clothes in supermarkets because that's all I can afford. And people with OI are usually above average IQ. Though AFAIK it's not known if that's a quirk of genetics or just because we spend our childhoods so bored at spending so much time waiting for x-rays that we can spell "danger" and "radiation" from repeatedly reading the sign on the door at about the same age our peers are getting to grips with "cat".
I also read a piece about how offensive it is to women that the language of mental illness is quite women-centric. "Lunatic" has connotations of the menstrual cycle, while "hysterical" pertains to the uterus (think hysterectomy). As a woman with depression I'm pissed off that women without mental health problems are supposed to be offended at being compared to me.
There are calls for women to rise up and challenge the patriarchy. Would the revolution be accessible to me? I doubt it considering I'm not even allowed to be part of the debate.
You might also like... 'Caitlin Moran and feminism’s ableism problem' on The F Word
02 January 2012
First there was BBC Breakfast on the tellybox. This was followed about 15 minutes later by Five Live (the beeb getting the most from the money spent on having a car take me to Television Centre):
BBC Sussex/Surrey (they were both broadcasting the same show today) heard Five Live and subsequently wanted me on their show this morning. What I didn't know in advance was that I'd be debating with transport minister Norman Baker MP. Here's what happened:
Gutted I didn't get to rebut his final speech. C'est la vie I suppose.
Thanks to @uwitness and @goldfish for tech help with making audio happen.
19 December 2011
The minute someone taught me how to send a text I was in love with the technology. I thought it was the greatest thing since sliced bread. Well, greater really: Slicing bread yourself isn't all that hard. It's certainly easier than decoding a drunk friend's speech at 3am when you've got APD.
My A Level theatre studies teacher was not a convert. She decried that such short, swift, exchanges would be the death of human communication. I, obviously, scoffed. How could such a wonderful idea opening communicative doors possibly be a bad thing?
I'm starting think that she might have been right.
Don't get me wrong, I'm a huge fan of texting, tweeting and Facebooking. Two weeks ago I was in a meeting and the chair tried to avoid using the word "twitter" because he knew I'd start proselytising. Again. But such speedy exchanges have altered the way we interact with each other and I'm starting to pine for the days when people were reliable.
I should say at this juncture that - yes - I know this post makes me a massive hypocrite. I'm well aware that I'm just as flaky as everybody else these days. I'm just as susceptible to life zooming past me as everybody else on the planet. But that doesn't mean I have to like it.
Everything being so immediate has its drawbacks as well as its merits. I like that I can tweet about a ludicrous conversation with a salesperson and have that company's customer services get in touch with me within a couple of hours because my tweet spread like wildfire. When I'm so ill that I can barely remember my own name I like that I can post one word answers to a question on Facebook without feeling a cultural obligation to ask "and how are the kids? Did your dog recover OK from getting his knackers whipped off?" (That last question especially doesn't go down well with someone who doesn't have a dog and you've just conflated them with someone else.)
I hate that not replying to people has become acceptable because it's just the norm now. With a few exceptions I've learned that if I haven't had an Email back from someone within about 6 hours of me sending then I'm not going to get a reply at all. Most notable exception was in May 2011 when I got a reply to an Email I sent in Dec 2008, but most people don't trawl through 2.5 year old Emails.
I think Twitter and Facebook have a large part to play in creating this environment of immediacy. I think we all follow/are friends with more people than more people than we realistically can keep up with. I don't get to see every tweet from every person in my twitter timeline any more because there's just too many tweets. I'd love to have a cull, or at least to stop feeling compelled to add more people, but there are just too many fucking awesome people on twitter that I just can't not follow. Even if it does mean I miss quite a few tweets from everybody because I just can't keep up: Keeping up with a fair few tweets of 198 people somehow seems more acceptable than only following, say, 100 awesome people but getting to see all their posts. Because I get an extra 98 people's worth of awesomeness, even if it's only intermittent awesomeness.
But this blasé attitude has spread beyond twitter into the rest of our lives. We check our Email and we deal with the really urgent stuff and leave the rest "until later". Except with us all being so in the present these days "later" never comes. The next time we check our Email we, once again, deal with the pressing matters while the "till later" stuff gets shunned to page 2 of your inbox and ends up forgotten entirely.
Blogging is much the same. It used to be the case that I'd read all the blog posts in my RSS feed reader. But now I, like everyone else, only read something if I happen to be online when it's posted because we're so present-focussed we don't scroll down any more. Seven years ago your latest blog post would get just as many hits if you posted it at 11pm on a Saturday as it would if you posted it at 11am on a Monday. Even if the hits didn't come in until Monday morning, the post would still ultimately get read. This is no longer the case. I find myself more and more advance-scheduling tweets and blog posts to be published at time when I know the internet will be busy.
All this means that we tend to keep repeating ourselves. When we write a blog post most people won't just tweet the link once and leave it; they'll keep on posting at different times of day to attract an audience. If you send someone an Email and they don't reply you're faced with the choice of having to either just forget about it or chasing them up. I really hate both of these things.
I can get really paranoid about being annoying. Most of the time I'm fine with it: My high-pitched voice, rapid speech, and opinionatedness do not endear me to the masses. Usually it's my conclusion that they're arseholes for not wanting to listen to me. But sometimes, when I need someone's help, I can't just say "oh, fuck it. I won't chase them up." And when I have to chase someone up I become acutely aware of how annoying I am.
(I should be clear that this isn't a self-loathing thing and other people find me not at all annoying; quite the opposite. I had no problem with being annoying until other people told me how grating I was. And they've told me that in great numbers.)
Welfare reform is currently making me crazy. Actually properly crazy. But I refuse to give up fighting just yet because I would actually like some kind of future. I know we've only got a few weeks left before my fate is doomed, but until that time I can't not fight.
This need to fight while extra crazy is just making my neuroses worse. If I Email someone who has got the capacity to be of some use in the fight against welfare reform but I don't get a reply, what should I do? Well, obviously, I should chase them up. My Email's probably fallen to page 5 of their inbox by now and is never going to get a response unless I do. But I really wish they'd reply of their own volition and save me the time spent sat in the bathroom, in the dark, rocking back and forth repeating "oh God, I'm a terrible person. Oh God, I'm so annoying. Why do I have to be such an awful person? Oh God I'm such a bad person. I wish I wasn't so annoying."
And as for repeatedly tweeting the same thing over and over just to get the message out to people who happen to be online at different times of the day: It'd be interesting to do an experiment to see if people found it easier to keep up with all the people they follow if it wasn't the norm for everyone to post the same thing several times. I don't need The Huffington Post to tweet the link to the same article 3 times in as many hours, and if they didn't then perhaps I might have caught the tweet in which a friend was having a crisis.
My main problem with repeatedly tweeting the same content is, again, that I can't do it because it sends me into mini-meltdown about being too annoying. I have few enough followers as it is without boring the few I've got into abandoning me because I just post the same shit again and again. And giving someone an @ message requesting a retweet is another behaviour that'll make me weep with guilt if I try it.
I'm a big fan of the technology that allows us to communicate so instantaneously. I love that I can have these swift non-verbal interactions with anyone anywhere in the world. Twitter and Facebook are so valuable to me as a poorly person. From May to October this year I didn't write anything longer than a tweet because I just wasn't well enough. But these short, rapid, interpersonal exchanges saved me from being completely isolated in that time. You can tweet using your iPod in bed, you can tweet from a hospital waiting room, you can even sometimes get sufficient signal in the hospital basement to send a text between x-rays. You can check Facebook while waiting for your pharmacist to dispense your vast quantities of medicines. Last week was the 3rd anniversary of my mum's death. One of the first things I did when I stopped screaming that night was to tweet the fact because I wanted support from my friends around the world.
It genuinely makes me quite sad that my old teacher turned out to be so prescient about the death of communication; or at least the death of quality communication. I'm a big fan of short, rapid exchanges you get via text or on Twitter; but did we really have to abandon "old school" replying to Emails and so on? Have we as a species become so wrapped up in our fast paced 140-160 characters world that we can't find the time in our lives to read/write anything longer? Have we become so present-orientated that we really can't reply to any Email sent more than 6 hours ago. Even if it's a really important one?
Stop this world. It's spinning too fast. I want to get off.
02 December 2011
♫...I'm not sure all these people understand. It's not like years ago, The fear of getting caught, Of recklessness and water...♫
Based on my experience I don’t think it’s that bizarre at all. In fact, again in my experience, Atos and the IPC have more uniting them than separating them.
As a teenager my dream was to be a Paralympic swimmer. All disabled athletes are classified by medical personnel as to their level of impairment. So all prospective Paralympians have had to undergo an Atos-esque assessment before they can compete.
All sports have different classification systems; some like athletics have impairment-specific systems (so people with cerebral palsy compete against people with cerebral palsy and people with dwarfism compete against people with dwarfism... and so on) while other sports like basketball have a pan-impairment system. Swimming uses the latter style system.
The classification system used in swimming for people with physical impairments ranges from 1 to 10, where 1 is the most severely impaired, and 10 is the least severely impaired. A typical 10 will only be missing one hand or less than half a leg. A typical 1 will have almost no use of any part of their body.
The system is designed so that in theory you compete against people of a similar level of impairment to yourself. So in an S6 race you might find a couple of paraplegics, a couple of people with no arms, a couple of people with hemiplegic CP and a couple of people with dwarfism. Wildly different diagnoses, but considered to be of the same *severity* of impairment.
People with a physical impairment will have 3 different classes - an S class for freestyle, backstroke and butterfly; an SB class for breaststroke and an SM class for individual medley. This is because free, back and fly rely mostly on the arms for propulsion but breaststroke relies more on the legs. So while a paraplegic and someone with no arms will be able to race as equals on free, back and fly; the person with no arms would have a massive advantage over a paraplegic in a breaststroke race. So typically the paraplegic will be an S6 SB5 SM6, while the person with no arms will be an S6 SB7 SM6. Yes, this does mean that the person with no arms still has an advantage in the IM race; the system is far from perfect.
After years of training I made it into the GB team for the Europeans’ in Seville in '97. I went out to Spain as an S6 SB5 SM6, and came home as an S9 SB9 SM9! This was because the classifiers/the system is only used to dealing with "common" impairments. Osteogenesis imperfecta is rare. They ignored not just one, but four aspects of my impairment when assessing me, and decided that other than 2 duff elbows, one duff knee and one duff ankle I was almost able-bodied. A quick glance at me can tell you that I'm quite clearly much more severely impaired than that!
Osteogenesis is a form of dwarfism. Despite being sent medical evidence from experts the IPC classifiers refused to accept that fact. There was actually a swimmer around at the same time who had achondroplasia – a much more common form of dwarfism – that had had her limbs surgically lengthened and was taller than me. Despite being classified on her height alone, and being taller than me she was an S8 (so lower than me) because they took her dwarfism into consideration; but not mine.
They refuse to believe that hypermobility is impairing. They assess each joint and award it a point score. A low score means it has very little movement; a high score means full range of movement. The IPC refuse to start deducting points again when your joints go far beyond normal range of motion. Instead they just say “aren’t you lucky to be so flexible?” So my inability to keep my fingers together whilst swimming (very important for your hands functioning as paddles) because the joints just aren’t strong enough to resist the force of the water was disregarded. The only joints of mine they didn’t give full points to were my elbows, left knee and left ankle.
You would think that my joints with restricted motion from being repeatedly broken would at least knock off some points, right? Wrong. Like I said, they only accepted I had 4 impaired joints. They totally disregarded the fact that my wrists have been smashed up too.
Because collagen (the protein not formed correctly in OI) is also found in muscles people with OI have poor muscle tone. We can strengthen our muscles with exercise but we’ll always be starting from a lower baseline. At the time of that classification assessment in 97 I was training 7 times a week. As a result my muscles were roughly equivalent in strength to a non-disabled person who does no exercise at all. They didn’t care that I worked my arse off to have the equivalent strength to a lazy person with standard muscle tone; they just marked me down as being of “normal” strength, refusing to accept osteogenesis affects muscles.
The International Paralympic Committee can call you up for reclassification any time they want, but you can only appeal once. I had my appeal in 1999. They ignored medical evidence, consultant's letters, etc and decided that I was still an S9 (though my SB class got reduced to SB8, it didn’t matter because I sucked at breaststroke so never did it).
My one appeal was used up. That was that. I quit swimming in 2000. In recent years I've joined a Masters team, but because of my health I don't get to train that often. Between my stomach, a broken rib and a prolonged infection I haven't been for a swim since July. I've gone training with little fractures many times (in fact the last time I went in July I had a cracked metacarpal) but the rib was a bit too bad; getting out of breath was pretty painful.
For people familiar with reading about experiences of Atos assessments it all sounds fairly familiar, doesn’t it? Ignoring symptoms in a medical assessment in order to find people less impaired than they actually are. Though, actually, I’ve personally found Atos to be fairer: 2 IPC assessments and they both claimed I was less impaired than I am. I’ve only had one Atos assessment thus far and that did, correctly, find me unfit for work. And within the benefits system there are several steps of appeal, the IPC only let you have one.
(In case you’re thinking “how can she be unfit for work if she used to train that much?” I would direct you to many other posts on my blog where I talk about how I’ve always had my mobility impairment but until about 2005 I was “healthy”; I was free from illness. I just had a dodgy musculoskeletal system. But now I have a ton of unrelated health problems rendering me incapable of working.)
Atos are known for making assessments on how a person looks: People with invisible impairments tend to fare worse in the assessment process than people with conditions that can be seen. The IPC employ the same tactic: Part of the assessment process is that they watch you swim. Sounds sensible when they’re assessing how your impairment affects your ability to swim, right? My problem was that I’m a good swimmer; I trained hard and developed excellent front crawl technique. I was penalised for not looking particularly impaired when swimming front crawl, regardless of how impaired I actually was.
Both bodies also are more forgiving for people with better known/understood impairments. If you have cerebral palsy, a spinal cord injury, a missing limb or achondroplasia the IPC assessment criteria accommodates you. Likewise Atos are usually more understanding of people with better known conditions (like cancer) than people with diagnoses that aren't quite so well understood (like ME).
Of course, when the IPC find you less impaired than you actually are it means that you lose your dreams. When Atos come to the same conclusion you can lose a lot more.
21 November 2011
In July 2002 I was doing a week's work in a school back home in Cambridge. It was after my parents had moved from Cambridge to the arse-end of nowhere so I crashed at some friends' house in Ely for the week. One night I was in the pub which had kinda been my local for the last year I lived in Cambridge; when in walked someone I'd gone to Long Road with about 6 years earlier and had not seen since.
He was living in Brighton at the time and was also on a fairly fleeting visit back to Cambridge. After lots of talking we agreed that I could stay at his in Brighton after Pride the following month.
So the night of Pride in 2002 we sat in his living room talking half the night and getting even more wasted than we already were. I mean so wasted that on the train the next day I was grateful for those shitty old trains where wheelchair users had to sit in the guard's van out of sight of all the non-disabled passengers. No-one could see how green I looked and I could occasionally whimper because there was no-one around to hear it.
At one point I said something that made him laugh: Made him laugh so hard that he fell off his chair. Once he'd regained enough composure to be able to speak he said "you should do stand-up."
I don't remember what I said, but I'm sure that under the harsh light of sobriety it wouldn't be remotely entertaining. However, his remark sparked a thought process in my head that I couldn't shake off.
I'd been a fan of stand-up for a long time. Like most people my age, my introduction to comedy was The Mary Whitehouse Experience. The first time I saw it, aged 12 at a sleepover at a friend's house, I remember laughing so hard I couldn't breathe: It was the single greatest thing I had ever seen. In 1992 Both Newman & Baddiel and Punt & Dennis toured the UK and played at the Cambridge Corn Exchange. I remember Newman & Baddiel came to town in April 1992; my 13th birthday was in May and I begged so hard for tickets as an early birthday present. That gig was the first time I saw live stand up, and was followed about 2 months later by seeing Punt & Dennis. Having had my appetite for stand-up whetted I saw several other comics off the telly when they came to town like Jo Brand and Jack Dee. And, of course, Newman & Baddiel and Punt & Dennis a few more times.
I'd always loved performing but the thought of being a stand-up had never crossed my mind. I actually kinda thought that being that funny was like a superpower and it wasn't something that regular people could do. His comment triggered this niggle in my brain that "well maybe I could do it?"
I spent the next two years procrastinating on the idea, while seeing loads of comedy. I regularly went to comedy clubs, to see solo shows at theatres and I went to loads of TV and radio comedy recordings on account of them being free and me being a poor student. It wasn't unheard of for me to go see comedy 4 or 5 times in a week.
When I started doing stand up in November 2004 I very quickly realised that I'd found what I wanted to do with my life. I loved it. Of course, I'm the unluckiest person in the world so stand up dreams were shattered by illness.
I gave it up in 2007 when I became too ill too often to carry on. I was hoping that my health problems would only be temporary and that a few pills here, quick operation there and I'd be good to get back to it. So I decided to bow out before I alienated every promoter in the country. If you're booked to do a gig and you have to cancel on the day because it's a "spend the day in bed with a bottle of morphine" day then you're going to put that promoter in a bind. It doesn't matter that you're genuinely ill, you've left that promoter in a tight spot with a gap in their bill and only a couple of hours to fix things. So they're never going to book you again and are probably going to badmouth you to other promoters that they meet. Luckily the only promoters I pissed off with my health-related unreliableness were small fish rather than any of the really key national bookers. But it was only a matter of time.
It's looking increasingly like I'll probably never be well enough to work again. Kinda ironic really that the current political situation for disabled people in the UK has given me so much I want to say through the medium of comedy; more than I've ever wanted to say before. And the stories I want to tell are so shaped by being ill that I probably wouldn't have the same stories to tell if I was well enough to go out and tell them.
It was politics that led me to bump into him yesterday. I quickly popped in to the Bank of Ideas to check out the access so I could write it up on WtB. I'd been in the building only a few seconds when someone brushed past me and mumbled "Hi Lisa" as he did so. It was him; the guy who'd told me to do stand-up. We didn't chat long because I couldn't stay; this current infection had me feeling like I was dying. Honestly on the bus home I felt almost as nauseated as I did on that aforementioned train journey 9 years ago. We were catching up and he said "I know you're a comedian now..."
"And I have you to thank for that. Do you remember that night 9 years ago when I crashed at yours after Pride? I said something that made you fall off your chair laughing and you told me I should do stand-up."
He didn't remember.