All too often, I shy away from talking about my life as a disabled person. For so long, I found myself deprived of equal opportunities and fair treatment that I found it easier to repress my true identity. If I presented as an average-looking 'normal', I found, society was typically more accepting of me.
One of the earliest parts of my life was Families in Touch, a community group created for disabled children. The group offered a lot, and yet nothing in particular. It offered a myriad of support services for families with disabled children, depending on what their support needs were. From accessible transport links to community support workers and other groups that were available, it seemed as though Families In Touch had it all.
Families InTouch met several times per week, in a village hall nestled in the heart of Avonmouth, Bristol. I remember the tall arching windows and the forecourt outside, marked out with hopscotch and other fun games. The children would try to play the games, but we had to jump with both feet each time, you know, because of health and safety.
Each session ran for about four hours each day, three of which were like a respite service. There would be an hour of activity, during which time parents would be supported and advised if they needed it. Parents would then stay for break consisting of a cup of tea for the parents or a (plastic) glass of squash for the kids, with a biscuit. Parents would then leave and we would stay for another hour before lunch, an hour after lunch and then home. If your parents didn't pack your lunch, then lunch was always something and chips from the local chip shop. Once a month, I was allowed a battered sausage and chips, as a treat. Activities also ranged somewhat, with arts and crafts, video games and even a bouncy castle!
I used to attend Families in Touch with my younger brother, who I don't name on my blog for personal reasons. He and I suffer with a myriad of disabilities between us, although I often called him "the escapee" because he didn't go through nearly as much prodding and testing as I did.
During the summer bank holiday, we used to go on several daytrips to some exciting and fun locations. From daytrips to the zoo and specially booked visits to a local fun pool, we really did do it all. There were even trips to Longleat Safari Park and even a visit to Crinkley Bottom!
You're probably wondering, then, why I'd be so critical?
In her latest post, The Wheelchair Teen talks about the hierarchal approach to disabilities which she says are demonstrated in the movie Crip Camp. It's one thing to see this portrayed in a movie, but it's quite another thing to experience this tiered approach in real life.
At the beginning of every session, Families In Touch would meet in the reception area of the village hall. Parents and their disabled children would meet, and children would notice other children. Children would also be banded with children: Good, quiet children with few needs, quarrelsome children with behavioural issues, and children who used electric wheelchairs. Almost immediately, this would create suspicion and anxiety about electric wheelchairs: What's wrong with you? Why can't you play with me?
In and of itself, 'disablility' was almost a dirty word, and not once did we have a conversation - even with parents involved - where we could discuss and share what our disabilities were. Children with ADHD stared at children with Cerebral Palsy, the look on their face was evident; bewilderment and concern, tinged with curiosity. The only ones who discussed our disabilities were our parents themselves.
"My child has.... "
"Oh I'm sorry, my son's got... "
In my post, Yes I'm Disabled, Yes I Have Kinky Sex, Too, I made quite a lot of references to some of the activities that have been made available to me, and many of these references were from my days at Families In Touch. Even if we had a choice of activities, they were carefully constructed based on what a preconceived disabled person could do, on what said disabled person would like, and with what support such a person would require. Sewing was done with pre-printed plastic boards, a blunt, plastic needle and a length of coloured wool, which would be quickly unpicked for the next person as soon as you put it down. Arts and crafts were never drawing, colouring and sketching however you wanted to. Usually, they would involve basic colouring books or painting using sponges or potato shapes with one-on-one personal supervision and help. Even if you didn't require assistance, assistance was often given to you, and you'd be spoken to as if you were slower, thicker, or as if you somehow needed things broken down. Nobody was an individual, we were all disabled children, and therefore, we would all be treated the same.
The video games were typically reserved for children with behavioural issues, and usually, they would be allotted to whichever child could fight and bite the hardest. FIghts always broke out over the controller, and volunteers were typically bitten while trying to wrestle the controller off of such a child so that somebody else could have a turn. In the end, the volunteers gave up.
Then there was the bouncy castle.
If you've ever seen a bouncy castle, you'll know that children like to do all kinds of things on said bouncy castle. They like to bounce on their stomachs, on their bottoms, they like to perform forward rolls, cartwheels and jumping jacks. Some particularly boisterous children even like to run from side to side in a fun game of tag, but all of these games weren't allowed. The only thing that was allowed was jumping up and down, on the spot (or as near to it as you could) and no more than four children at a time. You had ten minutes, and then you had to come off and let somebody else have a turn. You could only have another turn if nobody else was waiting.
Just like the video games, for the more shy children among, that also never happened. I also wonder now for the children who used a wheelchair, for whom a bouncy castle would be but a dream? For a club that was about activities for disabled people, was a bouncy castle all that inclusive?
The hardest part of Families In Touch was realising that this was never really about us, the children, after all. This was about our families, our parents, and caring for us was sort of the sick hobby that united them together. Instead of treating disabled children as individuals, we were treated, collectively, as disabled children. It was a great idea in concept, but I believe, very poorly thought out. It segregated and hid disabled children from the rest of society as though we were someone else's problem.
But when I was finally too old for Families In Touch, I turned my mind to other things.
The one thing that I was sure of, was that I didn't want to join a club for disabled people ever again. It wasn't that I had anything against other disabled people, but I saw that we are people, and I believed that we should be allowed to pursue the things we want to do. In today's world, community centres make more of an effort for inclusivity, and disabled children can and do make friends with their able-bodied peers. Even if it's not perfect, I believe it's at least another step forward from what it was.
The beautiful ending to my story is that, not long after leaving Families In Touch, I became a Rainbow Guide. Over the years, I continued in the Girl Guiding movement and went on to achieve several badges, including proudly my confectioner's badge, my folklore badge and, as is only natural for a Girl Guide, I achieved two awards for camping and survival skills. I got to try my hand at rock climbing, abseiling, orienteering, canoeing and rafting, all opportunities that I wouldn't have had before. I was finally able to find my voice, my strengths, my interest, my abilities and my weaknesses and above all else, I was finally allowed to play with my friends.