I have a confession to make. After several months of writing this blog I think the time has come to come clean. You see I have a problem, an issue if you like, that makes me a total hypocrite and I feel when I own up to it a lot of disabled people reading this will be up in arms and they will be totally right to do so. I’m not proud and I know I shouldn’t feel like I do according to conventional reason but there is a view that I hold that I can’t shift and quite frankly I don’t want to.
You see, I don’t ‘own’ my disability. I don’t class myself as a Disabled Person. I have a disability and I hate it. I’m embarrassed and ashamed by my condition and find it very, very hard to speak about the way it limits my life. Hip, PC people will say ‘it isn’t your fault that you view yourself so negatively. Society makes disabled people feel like this.’ But this really isn’t the case. I am not ashamed of myself, e.g. Holly the person. I just look at other disabled people and struggle to understand how they can accept and embrace their disabilities to a level in which it becomes a large aspect, if not the largest of their identity.
Let me explain what got me thinking about this. The social firm I work for is revamping its website and my boss asked all the staff to write a bio of themselves to be included. The outline he gave us was something along the lines of ‘write a bit about who you are, what you do here and why you work here.’ So I spent about a page talking about how I’m quite a driven person who didn’t want to sit round doing nothing just because I had a disability, how I really enjoyed doing graphic design and how important it was that firms like the one I work for gave disabled people an opportunity to have a job. Not once did I mention I had Cerebral Palsy. Conversely, a colleague of mine spent the first paragraph of his bio describing what his disability was and why it meant he couldn’t hold down a full time job. Now I have no right to tell my colleague what to write or how to feel about himself and like my boss says, it’s good we express ourselves in different ways on the site. I just, personally, found it very odd that someone would announce to the world over the internet their personal difficulties. To me, my impairment wasn’t particularly relevant. I have a disability ergo I have to work somewhere where I receive help. Why and what kind of help is, quite frankly, no-one’s God damn business if they don’t need to assist me!
The problem is I’m a very private person. I know I sound about eighty but I do believe there are certain things you don’t share in common conversation. When Jennie first asked me to do this blog she suggested that I start by doing a piece about my romantic history and any problems I faced dating. I politely declined. I have had issues regarding my personal life relating to my disability that has led me to certain views but I believe that sex and intimate relationships aren’t something you go round discussing with all and sundry and to an extent I feel like this about my impairment as well.
I feel like I’m in a minority among disabled people. I mentioned in a previous blog that I have friends with disabilities who are quite happy to speak at length about the various afflictions caused by their impairments and sometimes I ask myself why they do this. Is it because they’re looking for support from fellow sufferers? Their difficulties are vastly different to mine and even if they weren’t whose to say we would have similar methods of coping? My theory, and it is only a theory, is that their lives have been so entrenched by professional opinion and medical diagnosis that they’ve taken what they’ve heard over and over again and used it to form their personal identity. ‘This is who I am because I suffer from X disability which means I have trouble doing Y.’
I don’t want to dictate to anyone where and how they get their selfworth, if being a ‘Disabled Person’ is who you ‘are’ and you’re happy with that then I can’t change that. But I do wonder if it’s entirely healthy to base your personality on your limitations rather than your talents and interests.
I notice some parents of disabled children do this too and that I find really disturbing. I understand that being a parent of a disabled person is very challenging and tiring at times and you must be grateful of an outlet to vent your worries and woes but I am baffled by the willingness of some people to unload their children’s problems and diagnosis to a virtual stranger while the child is in earshot. How can you expect them to have any self respect or a broad character if that’s the introduction their parents give them? I always have to fight the urge to start asking really probing questions about their sex lives or medical history to see how they like that level of exposure.
I raised this issue with my Dad. He was convinced people did it because it’s a shared bond, a way of breaking the ice when two disabled people meet. He said, ‘Look, if I’m out on my motorbike and I go in a cafe and see a bloke sitting there with a motorbike helmet on the table, I’m going to start a conversation with him about bikes because it’s something we have in common. It’s the same as that.’ I disagree. Motorbikes are my Dad’s hobby, he enjoys them, chooses to be interested in them. Being disabled is not my hobby, it’s a pain so why would I want to pick over that sore point? Amy, my P.A, was driving me back from a friend’s house once when she said, ‘I didn’t realise how little you talked about your disability until I met your friends.’ My response was, ‘what’s there to say? You know enough to help me. Talking just reminds me of what I can’t do. There are more interesting topics to talk about.’
I do understand why some people feel the need to tell people about their impairment, especially when their disability isn’t obvious at first glance. They feel the need to explain what is wrong with them to avoid misunderstandings. But I can’t help feeling that every time this happens and it’s not needed that the person is somehow apologising for something that isn’t their fault, exposing a piece of themselves that is broken somehow. My main disability cannot be hidden but I have other impairments that you can’t see, some of them more disabling than C.P. I won’t say what they are because why should I invite more stigma into my life? People judge me enough as it is.
Despite all this, I know at the end of the day I’m wrong. We do need to talk about all aspects of disability if we are going to educate and make society more accepting. I admire people who see no shame in telling others what it’s like to them and I do try to be as open as I can. It’s just that I want to share the best of me with the world, not just be focused on my disability.