Taking one for the team

Three things have happened recently:

New statistics about disability hate-crime

I listened to a brilliant radio programme on 5 live, highlighting the new information that police are failing to recognise attacks made on disabled people as hate crimes. On many occasions, disabled people have been targeted simply because of their disability, but when the crime is recorded that information is missed out. It’s significant for two reasons – one is that for disabled people an attack may take far longer to recover from because of their pre-existing condition – but the other is that, along with racially-motivated crimes and others based on a person’s protected characteristics, disability hate crime carries heavier sentencing than an equivalent assault carried out at random. The programme stated that society is at the same place now with disability hate crime that we were with racially-motivated crimes 21 years ago, before the murder of Stephen Lawrence.

It’s completely usual to experience ableist abuse or attitudes every time you go out. But culturally, people don’t currently stand up for the disabled person being insulted in the way that they would if, for example, racist or homophobic abuse was taking place. And often people are unaware that language being used is offensive – there’s a lack of education in the population at large as to what constitutes inappropriate behaviour.

The programme is available on iPlayer here: http://www.bbc.co.uk/programmes/b04hmrv1

The homophobic hate-crime story on Doctors

Don’t judge me, I watch Doctors. A current storyline is that of Mandy, a nurse in the regular cast, and Catriona, a woman she meets at a nightclub.  As they’re leaving the club, they kiss in the car park, and a gang of girls shout insults at them, calling them disgusting. They wait until Catriona is leaving, alone, then surround her, drag her to the ground and begin to beat her up, until Mandy steps in and stops them. She’s left hurt and shaken.

That’s alarming in itself, but what’s more worrying is the attitude of those they speak to afterwards. The club bouncers don’t help to patch them up or call a taxi. The police don’t believe their story, putting it down to a bit of argy bargy at chucking out time, rather than the hate crime it was. They hold Catriona as responsible as the gang for provoking the assault, and say that as her injuries aren’t very serious, the crime’s not worth pursuing.  The hate crime unit are nowhere to be seen.

Experiencing aggression at church

On my first week on the welcome team at church, I was chatting to a new person after the service, and when we’d talked a while, was taking them through the crowd to meet one of our staff. At this point, a hand tapped my wheelchair. “You, stop, what do you suffer with?” the man said, aggressively positioning his body across mine, so I couldn’t move forward, and his face was bent over me, inches from mine. “I don’t ‘suffer with’ anything” I said. “You know what I mean, why are you in a wheelchair?” Slightly taken aback, I said “I don’t discuss my medical information with people I’ve never met.” “So there is something wrong with you… you have to take this.”

He forced a ripped piece of card at me. “I don’t want to take that, thank you.” I said. He said that I had to go to this website, and I had to take the piece of card. By this stage he was getting more aggressive and I just wanted to get away – the new person I was “welcoming” was growing increasingly uncomfortable. It was clear he wouldn’t let me move until I accepted his “help”. I took the card, and got away as quickly as I could. It contained a URL, an email address, and some other writing. I put it straight in the bin.

Concerning. Concerning that he had those preconceptions about disability. Concerning that nobody stepped in to check I was ok. When I mentioned it to one of the elders, he said it was good that I’d been the one to speak this odd visitor, rather than, say, a fresher student. I’d protected everyone else from having to talk to him. But that day at church, I was the only visibly disabled person there – of course an ableist was going to single me out.

But how does it make you feel?

The incident at church was ten days ago, but I still feel pretty shaken up. I’ve had nightmares. I purposely keep my push-handles tucked away on my chair, so that I can’t be tipped over, or pushed when I don’t want it. But in the nightmare, the man gets increasingly aggressive, and pushes me to the ground. I get surrounded. When I’m asking for the police to be called, the crowd are telling me to forgive him and to stop being a victim, and I’m going into a relapse. Someone says “if she can’t look after herself, maybe she shouldn’t have come out”. Someone else tells the man what’s “wrong with me” but it’s clear neither of them believe I’m really ill. I can’t speak or move, because it’s a relapse. People start to carry me somewhere, even though they’re hurting me by doing so. The police arrive when I’m too exhausted to think what happened, and people assume I provoked it, as this never happened before we had wheelchairs here.

I think the overwhelming feeling from this experience of aggression was one of being silenced. I felt somehow responsible, ashamed, as if I couldn’t speak to anyone about it. As if, somehow, by being openly disabled in public, I should be able to take the insults and aggression that come with it. That the fact that he probably meant well should make it any less hurtful. That in a nice church, this wouldn’t happen, so it’d be wrong of me to say that it had. It’s going to take a while to heal properly, and it’s going to take courage to go back to the welcome team this week.

After that, I don’t know.

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Stuck in the middle

Holby City, 26 Mar 2013, Journey’s End. 

Today was a good day. Today, one of my favourite characters, Tara, the ambitious medical student who’s quickly becoming a formidable heart surgeon finally got the opportunity to do a properly difficult operation, and save somebody’s life.

Problem is, Tara has a brain tumour, which is growing, and slowly it’s meant that she’s been less and less capable of doing her job. Last week it was a hand tremor. This week it was a fit which made her collapse.

Her boss’s boss’s boss, the big cheese, on seeing her latest brain scan, marched into theatre, and almost stopped her mid-operation, but was merciful, and let her finish. She’s acheived her dream, she saved a life, and now, it’s just a matter of waiting for the tumour to take hers. Soap gold dust.

Pretty actresses like her get signed up by ITV with no problem, we’ll see her in something else before long. You get used to the three yearly cycle of new doctors and nurses after a while.

But for me, it’s not so cut and dried. I don’t have a single, realisable dream, after which I rest easy. I don’t have an agressive, terminal disease which will rapidly take my life.

Today I made a little mistake at work, I didn’t perceive something as it was intended, I wasn’t quite as quick as usual. Then I had a conversation with colleagues during which the track of my multitrack mind which says ‘my legs hurt, can I sit down now?’ was sounding louder and louder til it drowned the conversation. I dried up the dishes sitting down. Nobody’s going to swoop in to march me from the operating table, it’s nothing half as melodramatic.

But it has begun, and where will it stop? Today I am less able to function at work than I was last month. I am less able to interact with others such that they don’t notice a difference. I am less able to contribute. I am less able.

Moving onto other BBC medical soaps, in today’s Doctors, Jimmi was examining the stages of bereavement. Denial, Anger, Bargaining, Depression, Acceptance. I am losing the me I could have been, but how will I adjust to that?

Science seems a reasonable (sorry) way to start, documenting every movement and every symptom until life becomes a long equation of Energy In = Energy Out. Or energy out meaning pain tomorrow. Is that bargaining?

Denial’s quite nice where I can face it – being perceived as ‘normal’ at work is welcome, in a way. Even the people I’ve told don’t seem to want to ask how I am. But when I pretend I’m not ill, using energy recklessly like a ‘normal’ person, it’s not long before my body reacts. On the train I was shaking with muscle spasms from Norbiton to Fulwell. Looked like a right weirdo. One day I’ll accept my limitations and ask for a seat.

So, I’m not an actress on a short-term contract, with visible wobbly-collapsy-symptoms and weeks to live. But nor am I completely well, with nothing to stop me standing by the water cooler for a chat. I’m stuck in the middle.