Apparently I can have an attitude problem. This is a rumour that surfaces every once in a while about me and I think it might be about to come back for another visit. I’m not sure I’m particularly sorry about that.
I can be loud and I’m definitely opinionated. I’m also disabled and I think that’s half the problem. As someone who has spent her entire life in a wheelchair, I wouldn’t have achieved half the things I have or be anywhere near as independent as I am if I didn’t ask for what I need or complain when it goes wrong. But with the current vilification of disabled people in the press and the scrounger stereotypes doing the round we are supposed to be grateful for everything we have and everything that’s done for us. And god forbid we should actually have an opinion of our own.
I am grateful. I’m grateful for many things. Mostly for living in a country where despite all the cuts and the multiple problems facing disabled people living in it I have access to the NHS, which provides me with free health care when I need it. For the benefits which provide me with financial support. For a flat that’s fully adapted to my needs and allows me some independence. For friends and family who make me laugh, lift me up when I’m feeling down and mean a lot to me.
In the disability rights movement a phrase that comes up a lot is “nothing about me without me.” Basically, nothing should be done to or for a disabled person without asking what they think. For me personally it’s something I very much believe in but as a concept it’s not been something new and life changing (as it has for others) I was taught by my family from the word go that I might not be able to stand but I’d always need to stand up for myself and my rights. Up until this year not being heard was a very rare thing.
I’ve spent a lot of time this year fighting with a couple of people and places that could easily have included me. Everyone who knew about it agreed it was easily solvable. The organisation wanted to find a solution too. When I spoke to them, they’d agree that it could be done. Then a few weeks later they’d say we’ve decided that what we agreed wouldn’t be safe for you. We’ll do this but it’ll take a month to sort. The fact I felt it was safe was ignored. That month would pass and another excuse or problem would have been found.
I felt useless. It was obvious that my pushing for my rights was bothering the people employed by the organisation. Comments were made about how they were working very hard to resolve the issue and it would take time. I was told that I knew they were working on it and I needed to stop letting my disability stop me. They wanted me to shut up and be grateful they existed rather than asking to be fully included. OK so they didn’t tell me that but they didn’t need to, it was obvious. I felt guilty about it but also angry about the way I’d been treated. In a way my self-esteem was destroyed.
I’m sure they did work hard and there was probably a lot involved in solving it I didn’t know about (this was a small part of the NHS) but if they worked with me more than they did it could have been quicker and easier.
I know which treatments for my condition work best for me – I’ve had it my entire life. I know what disability equipment I can use and what I can’t. I can make an educated guess which new inventions have potential for me and are worth a try. Which will probably be a laugh but completely useless. I can tell you the size and capabilities of my wheelchair without needing to look it up. I know the pointed questions I have to ask to ensure that “oh yes we have wheelchair access” is actually the sort of access I consider accessible and they haven’t forgotten about the step to the front door or the fact they replaced their disabled changing room with a stock room (Evans in Reading, I’m looking at you). I even know that some places only have disabled toilets in the gents and you need a runner to check it for men using the urinals first (true story)
This is where the idea of ‘nothing about us without us’ comes into its own. I’m sure if you’re setting up a new business or moving into new premises the idea of providing accessible facilities might be a bit of an overwhelming process. Especially because you face the possibility of people like me coming along and making a fuss if you get it wrong.
Most people don’t mind being asked about their disability. I’m happy to answer sensible questions because that usually helps me. I’m not a specialist architect or an occupational therapist or professional. I’m an expert in living in a wheelchair and in what I need to make things work for me. I’m happy to recognise when people are trying to help and doing their best. I also need people to realise that I want to be included and asked for my views. Because I don’t have an attitude problem and I’m sick of being told I do because I have rights and will make a fuss to get them.