I only recently discovered the term ableism. Up until then I knew that being disabled changed the way people acted around me but I had no word to encompass what was happening. I struggled as a child to voice why I found the actions of other people so frustrating, why seemingly small things felt so big to me.
It’s hard enough to be a child and try and speak out about the problematic behaviour of adults, but when others don’t even recognise those behaviours as potentially harmful it becomes much worse. I remember the feeling of frustration that would rise inside me, a kind of nauseous desperation because I tried to speak out and nobody ever listened. Nobody in a position of power likes to be told they are wrong, and often adults will completely disregard the feelings of children because they take it as a personal attack from someone who can’t possibly know what they are talking about.
I spent a lot of my childhood feeling angry at people who dismissed my feelings. I knew I was hurting, I felt shame at who I was, because if I was someone different none of those bad things would happen to me. I placed the blame on myself because every time I tried to hold someone else accountable I was told I was wrong.
It took a long time to realise that being disabled shouldn’t be a cause of shame. That I shouldn’t have to take responsibility for the behaviour of adults who should know better. And when I realised this it was such a relief. Finally I met people who also called out problematic behaviour, who recognised that people with disabilities are not at fault for the way abled people behave.
I used to be in the school choir. I must have been about 7 or 8 when I joined and I stayed until almost the end of my time at primary school. It was a miserable experience, and if I’d had the tools to understand what was going on and process it I would never have stayed. For one of the performances we went to the National Railway Museum and sang Christmas songs. We all had to be dressed in costume and carry lanterns with candles in them. All of us, except me. I should point out now that the lanterns were completely safe, they were made of metal and have a small door on the front that you shut to keep the candle inside. And yet I was the only child not allowed to carry one. I begged to have one, because I wanted to be like everyone else but I was told no. Every adult I went to said no. They told me that it wasn’t a big deal, that I was overreacting. But when things like this happen to you every day they stop being small isolated incidents, they roll into one huge oppressive shadow that smothers you.
Another time, when I was in my final year of school I was excited to finally stand on the benches. When you’re 10, something like that is a big thing. All the younger years had to stand on the floor, but the kids in the final year of school stood on the benches. However, I wasn’t allowed. And again I asked why not, and was told no. Nobody even gave me a reason, because giving an answer would mean admitting to discriminating. You have to remember, that school “didn’t tolerate discrimination, they welcomed all.” Until they didn’t.
I ended up leaving the choir at some point during that year. Finally I had enough when every child got a part in the school show except me. They said it was an accident and how sorry they were, but did they really expect me to believe that? I said I was never coming back and my mum didn’t argue with me. I think she’d hoped I would leave sooner, because of how miserable it made me. But I thought I could change them, I thought if I made myself smaller, if I didn’t fight back, if maybe I acted like a different person they would change the way they treated me. In short, I placed all the blame on myself.
People might read this and argue that the school were just keeping me safe, that they couldn’t possibly let me participate because my disability puts me at risk. This isn’t true, and those kinds of thoughts come out of a complete lack of understanding of disabilities. I was never at any more risk than the other children. People try and justify discrimination against disabled people by saying they are only doing it to help us. Like we couldn’t understand how to keep ourselves safe, so an abled person must do it for us. Please stop. If you think a disabled child or adult might be at risk during an activity then ask them. They, better than anyone else understand what their limitations are.
If you are an adult who works with disabled children please listen to what they are saying. If they say your behaviour hurts them then think about what they are telling you. Don’t assume that you know how they feel, or that you aren’t doing anything wrong. A lot of us hurt people without meaning to, but part of fixing the problem is admitting that you might be contributing to it. We are taught by society that disabled people need looking after, we’re taught to pity them, to talk about how sad it is that they are this way. All these ideas contribute to the discrimination we face. Don’t assume that because someone can’t see, or walk, or use their hands, or communicate verbally that you know anything about their quality of life. Don’t pity them; don’t say how nice it is that they are out for the day. We don’t need or want your sympathy. The best thing you can do is to ask us what we need and respect the answer we give you.
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I once got my hopes up about having a possible paid job but 4 days after a meeting with the potential employer I was told that I’d been knocked back because of perceived safety issues about getting to a bathroom through a store room well that’s what the employment agency told me anyway. I called the disability advocate and in a meeting with them along with the employer the real issue came out that it was because of perceived privacy issues too. this being because of the screen reading software I use and the fact that they weren’t people off the street who would be coming in for appointments but business people. Flash back to 2004 when I was almost expelled for aledgedly groping a girl on the breast. A year7 boy decided it would be funny to push me up the stairs and he pushed me through the door and I bumped into a year7 girl and was made to tickle her under the arm and under the chin. I maintained I never touched this girl’s breast and that she was lying about it. I was the liar and suspended for 2 days as the deputy principal liked to always single me out and suspend me for minor things. Each time my mind wanders back to that I still feel angry and it’s a big factor as to why I keep to myself and often sit alone because I can’t take any chances that history is going to repeat itself again Even though I was cleared of doing what was aledged I still feel a sense of guilt years later and I’m wishing what I could have done to avoid a suspention
My heart broke slightly reading that. I used to hate it when everyone would be doing things, like building a raft, on a residential or not being able to particpate in a river studdy for my gcses because the people at the forest park said it wasn’t safe. My geography teacher told me we had to listen to what the people at the forest park said. This was in 4th/5th year. I then got called up by my geography teacher because i lost marks because i couldn’t do the river studdy. I hate feeling like a spare part.
In another case, there was a guy at the youth club i used to go to. He was an adult but couldn’t walk or talk. Everything was still sound at home though. He wanted an alcoholic drink. His carers wouldn’t give him one because of his disability. I was so cross for him.
Or the time when we were doing a confidence building course with Womens’ aid through a group. I wanted to know about contreception etc. Bearing in mind, i was an adult at that time. The womens’ aid folks were fine with that, but the social worker who ran the group was outraged.
People think they are doing the right thing when they are not really.