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Being Fine, But Not Fine.

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In all likelihood, I am fitter than you. I probably run, walk and cycle more than you do. I probably also spend far more time in hospital than you do. Most recently, I went for a run, then around 5km in, at a fairly speedy pace, my brain malfunctioned, and I had a fit, leaving me with a fractured skull and several stitches. Quite standard, for someone with epilepsy and the doctors and nurses, aware that I’d be used to this type of accident, acted as if it wasn’t a big deal.
Not so with others though. Most of my friends, who are also used to it, just said “Ouch – get well soon”. There’s always a slew of people who remark “You’re always ill/injured”, not as an observation, but more as a slight accusation. I’m treading carefully here, because it’s difficult to explain what’s bound up in this response. For many people, when thinking about disability, there seems to be a belief that disabled people are not healthy people and vice versa. That to be disabled is to be uniformly vulnerable. And whenever someone says “Oh for god’s sake, you’re always injuring yourself” I feel a) there’s an assertion that some part of it is my fault and b) they’re trying to decide whether I’m “healthy” or “vulnerable”.
From the outside, I doubt you could tell I’m disabled. I’ve got a full time job, and as I mentioned, I exercise all the time. I don’t need mobility aids, or any adjustments to my home or desk at work. I do however, have epilepsy, a progressive and hereditary arthritis of the spine and really complex migraines. But for the most part, this doesn’t alter my life that much. The occasional seizure is annoying, and can lead to a trip to A&E. My back does hurt, but exercise does wonders for the pain. And I’ve had migraines for so long, I can power through them. But I don’t “look” disabled. And people can struggle with that. Much of the discussion around reassessing people in receipt of Disability Living Allowance completely dismisses invisible disabilities as false. I’ve lost count of the number of times I’ve seen articles and heard conversations that suggest ME, PTSD, back problems and mental health conditions are “faked” by people “too lazy” to work. One commenter on Comment is free told how after a car crash left him with massively limited mobility he spent two weeks sat on the floor in his garden, working slowly, bit by bit on planting a flower bed. It took a huge amount of energy, and he was only able to plant one small bed, bit by bit. But he felt immensely satisfied when he’d finished. Then he was told one of his neighbours had seen him gardening and called the benefit fraud hotline.
The problem is, there aren’t clear and neat boxes in which to put “disabled” and “healthy” people. When I’m running 15km on a Sunday afternoon, I don’t feel disabled. When I’m on an ambulance stretcher being carted off to A&E, I might. But people struggle to accept that I can need a lot of medical treatment, but not need to be treated differently outside of the consultant’s room. And when people can’t fathom that there are spectrums of disability, that it’s often not a constant, it becomes easier to demonise benefit claimants. If you assume that some people see doctors more, not because they need to, but because they’re hypochondriacs or attention-seeking, it’s not difficult for the government to slash benefits from people who need them. And when you assume that disabled people are by definition weak and vulnerable, anyone who doesn’t fit that definition reinforces tabloid scare stories about the mythical mass of benefit-scrounging fake disability claimants.

A Little Respect.

Tanni Grey-Thompson, the former Paralympic athlete now in the Lords, spoke to the Telegraph about a recent experience on a train, when she was forced to throw her chair to the platform and crawl off the train because there was no one to help her on the platform or train:

‘As a disabled person travelling you always have an element of fear, feeling very uncomfortable, of panic, of just wondering whether you’re going to get off. I think it is fair to say that a lot of disabled people feel like second class passengers because they don’t have the same treatment as everyone else. I don’t expect to be swept in to first class and treated better than everyone else – I expect to have the same experience, and that is often just not the case.’

Pretty fair, I’d say. What do Daily Mail commenters have to say?

I used to be very sympathetic to people like this lady, but after having numerous incidents where disabled people behaved in a most arrogant and demanding manner including queue jumping, and using their disability to get preferential holiday time I just let em get on with life. They demanded and rightly received equality in law, so I just treat them the same as everyone else now. – Parent, Co Durham AGREE 100%,. best made point of the day. These people cannot have it both ways. Very very well said.
- Jonathon, N.London, 26/3/2012 10:45

Oh.

We have been hearing for years that everyone is equal, now she wants special treatment the cry is different. I always help if I can, but more times than I care to remember, the disabled person has given me abuse for trying to help them……..you can’t have it both ways.
- James 001, West of Nowhere, 26/3/2012 10:52

Right.

The huge cost that disability has added to everyone’s burden over recent years doesn’t help public sympathy for you. Also you can afford any means of transport and help, why expect it? Your outdated romantic view of charity is your problem; and lets face it how long before it’s illegal not to help?
- Andy, Bath, 26/3/2012 10:49

Illegal not to help. Tyranny.

I find it odd that this Woman expects to be treated the same as everyone else.Yet as far as I can see she has been as no one helps able bodied people either. She’s received exactly as she asked for.What she is in fact demanding is special attention and moaning about not getting it.
- Andy, Norway, 26/3/2012 11:25

Thanks, “Andy”

If one is disabled it is important to organise ones life more prudently. Getting off a train at midnight is not the best of an idea. May I humbly suggest that too many disadvantaged people expect everything to be handed to them on a plate , and that there could be a slight degree of arrogance involved.
- Malachy, Belfast, 26/3/2012 12:17

The arrogance of crawling unassisted off a train at midnight.

she did get the same treatment as every one else. know one helps me of the train
- Sue Previsor, Doncaster CC HSE, 26/3/2012 12:17

Are you in a wheelchair, Sue? Or just allergic to logic?

It may not be PC but the railways and the underground are not a taxi service. The staff when available are always unfailingly considering of disabled people but they cannot be expected to provide a continuous butler service to everybody who travels. If we equipped all train to cope with someone with Ms G-T’s disabilities why should it end there? What about people who cannot even move at all? or speak or live without apparatus? The sad fact of life is you can only go so far to accommodate diabilities. You cannot put an escalator up Everest.
- Andy, Portsmouth, 26/3/2012 12:28

You want to live a life that doesn’t involve abject humiliation when commuting? PC gone mad.

Hang on. These people fought for equal rights. And rightly got them. They are entitled to equal pay, equal everything as far as I can see. When they have a bad experience they run to the papers. I only ever see tanni in the papers when she is rubbishing able bodied people. If i was to rubbish disabled people the way she is complaining about able-bodied people there would be holy war. Where are my equal rights??????
- Luca, France, 26/3/2012 12:35

I don’t know about you, but I get the impression Luca’s a white, straight bloke. What about his equal rights?

Dear DM. I had a bad experience at Croke Park recently. I didnt get priority booking. I didnt get priority seating. I didnt get parking at the front door. Nobody held the door open for me. Nobody carried my food and drink for me. please please will you write a story about me – you did a story about this lady so its only fair – I think they call it equality.
- Patrick, Leinster, 26/3/2012 12:38

Oh, Patrick, poor love. Buy a new dictionary.

What about able bodied men in this world. Where have our rights gone ?
- Arthur, Stoke, 26/3/2012 12:46

HAHAHAHAHAHAHAHAHAHA oh god, my soul has died.

And she is a Baroness because??? 11 gold medals does not justify a title!– Pete, Midlands, UK (not EU), 26/3/2012 12:15——————And the ironic thing is that they do not race in ‘wheelchairs’ – they are specially built very expensive machines that make it extremely easy to race. Where is the achievement in that ? I would like to see them race in actual wheelchairs.
- Sam, Manchester, 26/3/2012 13:15

Would you, Sam?

They could put a little cattle type wagon with a big ramp on the back of every train where all the wheelies can travel together so they don’t feel so different. – Bill, NY, 26/3/2012

Thanks, Bill. Nothing screams inclusivity like being hidden in a cattle wagon and called “wheelies”.

And yes, it’s easy to roll your eyes and say the bottom half of the Internet isn’t representative of public opinion. But the Daily Mail do moderate their comments, and the ones above are those that have been deemed inoffensive enough to stay up. Several comments, since taken down, suggested that wheelchair users lead a cushy life, and that they should be made to wait until no able-bodied people need serving in a supermarket or post-office because they have a “comfy chair” that able-bodied people are denied. I’ve had enough bad experiences on public transport, when I’ve had seizures and people have left me for three stops before calling for help, or the time a bus driver who refused to stop was chased by an ambulance and screamed at by a doctor on board, to know that these opinions are common. So really, it’s no wonder the government’s onslaught on disability rights is moving on apace.

Memories, and how they let us down.

I have a terrible memory. Luckily memories are a great source of hilarity. I’ve forgotten where my keys are! Hilarious. Oh no, again I’ve forgotten the number of the bus I’m due to hop on. What a ditz. It’d be “endearing” if it weren’t a massive strain on my day to day functioning. Yet it’s not because I daydream, or am haphazard. It’s because my brain just won’t work normally. See, I’m epileptic,which most people assume means I have massively dramatic fits and then move on. I do have dramatic fits, and end up in hospital on a tediously regular basis. But that’s less troubling.

When you watch a film, and it’s not being screened digitally, there’ll be a few inevitable moments in every film where you won’t see a scene. This is rarely important in a film. But for a lot of my life, the scenes where my brain stalls are numerous, and last a good few seconds. Imagine you’re watching Lost in Translation, and a few seconds aren’t screened, but you don’t even notice. Now imagine that happens 20-40 times a day, but you’ve no idea when it’s occurred. That’s my life. Yet hardly anyone notices.

Before my grandmother died, she suffered from Alzheimers. She didn’t just “have” Alzheimers, she genuinely suffered. She was aware that something was amiss, that her memory was playing tricks on her and hitting out at her relationship with her family. She’d regularly confuse my dad with her brother as she struggled to cope with grief and memory. Amongst the most harrowing moments of my life were the regular moments when she’d forget my grandfather had died, then remember as if for the first time. “Where’s Stan?” she’d ask, shortly followed by “He’s dead, isn’t he?”, realising the love of her life, who’d been ill for so long, had gone.

But she never forgot me, and that was something I clung to. Her memories were jumbled, with regular gaps and disjointed, but they were still there. With a little careful jogging, she could often remembersome of the things we had done together. Nearly every visit ended in her realising there were things she wanted to talk about, but that the scenarios were no longer in her head. She’d struggle with constructing sentences. She’d become aggressive, then defeatist. She’d cry. We’d always cry afterwards. She died shortly after my grandfather, and though we missed them both terribly, we understood the crippling effect grief has on the body, even as the mind disintegrates.

But I worry constantly about how much we remember. How much of it is accurate. My sister recently moved into an area of Cardiff in which I’d spent a lot of my teenage years. Yet I couldn’t remember a single road name, or the shops/off licences/pubs I’d frequented. I’m heading back to Cardiff in a few days and I’m hardly sure I can rely on my memory to guide me around the town. I still feel a massive attachment to the city and country, but my memories of it are dimmed. Does it matter? Not on the surface. But I worry that later I’ll appear more baffled than I currently am, in my mid-twenties. That my inability to remember phone numbers, street names and surnames will translate into an inability to accurately remember the dynamics of past relationships. I’m already hopeless at remembering faces. What happens when I forget my best friend’s surname?