03.10.16

Our daughter has been given many labels over the years by professionals and others in their roles as assessors of the different facets of her “complex needs”. At many key moments in her life we have struggled to find the appropriate services and settings for her which properly accommodate, support and encourage her in what is nowadays called a “person centred approach”.

Of course to us, her parents, she is simply herself, our daughter, and her labels are left firmly outside our door when she is home with us. They are never far away when we venture out, however. We are reminded of them constantly. Today my beef concerns her “wheelchair user” tag.

A few weeks ago we went to a music festival for people with learning disabilities. It looked just up our daughter’s street as she loves live music and spectacle. When we arrived we found that the venue had quite a few steps down to it, and the temporary ramp that had been set up by the organisers was so steep as to feel scary and not very safe. Certainly it took two of us to get our daughter down in her wheelchair and three to push her back up when we left. It was clear that we would not be doing much coming and going while we were there despite having our hands stamped at the entrance. The woman on the door was full of apology: what could they do?

A couple of years ago we paid for two carers to take our daughter swimming at a local pool that had opened for evening sessions for people with learning disabilities. As I dropped her off in high spirits and looking forward to a new weekly activity, we were disappointed to find that the pool was on the first floor of an old building and there was no lift. We had been assured prior to going that the pool was accessible. Perhaps it was, but getting to it was clearly not. We made our feelings known: what else could we do?

It is hard to accept that not all services for people with disabilities are inclusive even given existing and widespread funding restrictions. It’s hard, sometimes, not to be mad at the wider world too.

We decided on a cinema outing yesterday. Did I say that our girl loves the cinema? It’s one of her favourite things. Unfortunately the autism friendly screening of our chosen film had just sold out as we got there. Packed to the rafters with young children and their parents. It would have been nice for a change to have the opportunity to be let off worrying about the audience’s reaction to my girl’s enthusiasm and unfettered enjoyment of the film in a safe and sensitive environment. We’ve had hostility towards us as well as concern in the past.

We went to another cinema in the end and were shown to our seats. The spaces for wheelchair users in many venues are often at the back and quite far away from the screen or stage, but in this cinema we don’t mind too much as it’s not too big, there’s lots of space and it’s easy to relax. It’s a familiar place. We had a lovely time. The film was great and very engaging. We waited until the very end to leave. The song playing over the credits was mesmerising. The ushers were busy cleaning away the remains of spilt popcorn and other rubbish discarded by hungry punters. As we got to the door to make our exit, it banged hard against our daughter’s wheelchair. The person in front of us had let it go without apparently looking behind them. Such a simple thing.

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