Wednesday, 12 September 2012

Prejudice and Having a Husband with a Disability

At the age of 8 I first experienced prejudice. My friend's mother fought for her child to attend mainstream school, this was the big bad 1970's. This little girl had down's syndrome. The principal of the school called her "a mongol". I raged.

Our page boy Ethan at our wedding


At university a lecturer came to see me. He said he had a student recently diagnosed with MS, his office was on the 3rd floor of the building, there was no lift. He suggested they hold the meeting on the stairs. She complained, he asked for my advice. I told him to apologise profusely and borrow an office on the ground floor. He was only trying to be accommodating but he was patronising - a form of prejudice.

I worked in the disability field and I saw two types of prejudice, the grinding societal inbuilt prejudice, and individual episodes of prejudice - people refused service in bars on the basis of their disability, refused to fly, turned down on dates. I had many an argument with bar owners or restaurant managers. "No this person is not a fire risk. Yes they are in a chair. The chair has these things, you know wheels? I can get him out in a fire quicker than you can walk". Or "Yes this person can have a drink, they are older than me, older than you even. Now give us a beer there's a good man".

Prejudice like that riled me, made me angry, spurred me into action. I have been a (voluntary) citizen advocate for people with disabilities, I've chosen to work in various paid and unpaid fields, and then.....I met Corey.

The first time it happened was when we were walking back from the pub one Friday night. Some hoodies through a glass at us and shouted abuse. Because my husband has a disability. The cute thing is, some people assume his disability is intellectual because of the way he looks (which is due to falling off a bike as a child and having stitches in his lip!) and are shocked when he comes back at them. We called the police and the matter was dealt with. But it left me shocked. I had never seen anything like this before. I was angry, and a little scared. People have strong feelings about disability, even in the 21st century.

The second time was also at a pub (lesson number 1 disabled people must not go out at night), we had been for a meal and were meeting friends in a local establishment. I was allowed in Corey was stopped. "Sorry you can't come in". He was ready to walk away but I was having none of it. "Why?" I asked. "Because he's drunk" said the bouncer. "Ok, how have you arrived at that?" I challenged. "Surely you can see the way he is walking, clearly inebriated, no service." I was riled. "Corey has arthrogryposis mulitplex congentia, would you like me to spell that for you? He walks like this as his legs have been broken and reset several times, he also has metal pins in his wrists, would you like a medical report before you let us in?", magically the doors opened.

Another form of prejudice is the "hero" tag. I often get "aren't you amazing?" I am not amazing. The first thing I noticed about Corey was his cute bum. I didn't notice the disability, it never concerned me. Apart from other people's attitudes, we do just fine. Yes Corey has some limitations but we get Disability Living Allowance to help us overcome those. Corey's car has adaptions. We are lucky.

Perhaps the worst, and something that hurts to this day, was when I was diagnosed with the pre eclampsia. I gave consent at 2pm. Everyone was positive and ok about things. At 8pm the midwife walked in with some paperwork. I could see some printouts about Arthrogryposis Multiplex Congenita. I knew what was about to happen, and I was furious. "What on earth is that?" I demanded to know. "This is a hard conversation to have but we need to discuss the possibility that the baby may have this condition and you will need to think about whether you want us to withdraw treatment."

Dear reader, for only the second time in the life of this blog I am going to use the "f" word. I said to her, and I'm not proud of it "well you can fuck right off with your print outs, not up for discussion". I was so angry. My own anger scared me! You see, all over my notes was "declined pre natal testing". My husband and I were both crystal clear we were having a baby, whatever the outcome. The thing about arthrogryposis is is that it is rarely genetic, and it should be picked up at 20 weeks anyway. We had had two scans with no abnormality detected, so it was highly unlikely Joseph would have had arthrogryposis anyway. If he had we would have dealt with it.

Now reader, I am not passing judgement on those who have had medical terminations. We live in a world where there are choices. I may not always agree with the choices people make, but I defend their right to make them. Not everyone can bring up a child with a disability, the outcomes are not always happy ones, and thankfully we can do much better now, that putting children into loveless institutions. There are choices.

I fear though, that for tomorrow's adults with disabilities, prejudice will get worse, not better. Had ultrasound been around when Oscar Pistorius was a foetus, would he be here? The lack of bones in his calves would have been detected. Will we see in 20 years time a Paralympics with acquired disability only?

Prejudice is real. I think the Paralympics have been great for making people think twice, but they are over now. Are we going to take these lessons and apply them to all walks of life? Are we going to make real, worthwhile employment for people with disabilities a reality? Are we going to preserve the benefits that give people with disabilities real opportunites?

It's time we had frank discussions about our attitude to disability. We pretend its no big deal, we cheer when someone with a disability does something amazing. But what sort of future will the little boy at the top of this post have?

It's up to us, isn't it?


7 comments:

  1. Wow great post,very thought provoking. I never knew people could be like that.

    My friend is a carer and when I have met him when he is working I didn't know how to deal with his "patient",sorry that wrong word but can't think what it is. He has very limited understanding but I still chatted to him. My friend says most people ignore him and talk over him,even talk about him asking what wrong etc.

    Sam

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  2. That just made me cry. What an impossibly insensitive thing for her to say - I hope she apologised. It's obviously a tick box she 'had to' ask because someone in policy making says so but what the hell happens to common sense???? Well done you with your response and as always a wonderfully written blog

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  3. I think it was one of those situations that emotions were running high, the staff hadn't had much dealings with such an early baby, or my husband's condition, and panicked. And you are right, there must have been some sort of protocol to ask the question. I was just so shocked that 6 hours had gone by with not one concern about it, and I wasn't prepared.

    Thanks for your comment

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  4. A brilliant post, and a truly insensitive thing to say. I think I would have had the same response to be honest. I really hope that the prejudice does change. I remember I used to work with disabled children and myself and a male carer worked with this little autistic boy, he was three at the time we were 21, and 24. One day we all went shopping and the little boy wasn't very happy, he is severly autistic complete global delay and non verbal, he was not happy at all. We were doing our job and some old lady walked past and loudly told the whole store that people as young as us shouldn't be allowed to have children as we clearly can't look after them and bring trouble makers up. She quickly got a lashing from both myself and the male carer! We were both so mad at her. I worked with him for 11 years and saw so much prejudice to him especially when he hit puberty and was still acting like a toddler in the street people were really awful to him so nasty xx

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  5. My wife, then GF who uses a wheelchair and I were in a pub once and a patronising bloke came up to me and asked "What's your Girlfriend got?" When I snapped back cheekily "ME!" the bloke was offended and told me aggressively there was no need to be rude.
    I then told him if he thought that was rude I could do much better unless he left us alone quick smart.
    He did and I still think back and laugh about it.
    For the record she had a form of Muscular Dystrophy and gets around in a motorised wheelchair. We've been together since 1985 and life is good
    David

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  6. A very powerful and thought provoking post. It is worrying that the stigma or prejudice surrounding disability seems to hardly be diminishing, bar political correctedness which seems to just mask horrible reactions. One thing that is very sad is when as a country we have shown great pride in the Paralympics yet are also have a long way to go with our attitude as a whole when there are not gold medals in the equation. Let's hope this next generation have the power and ability to cherish people for being who they are, not their abilities or medical tags x

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