I really hope everyone out there has enjoyed my last couple of fairly lighthearted blogs. A gentle dig at our queen on her 90th and my opinion on a West End show. I’m glad I could give you a little holiday from the heavier issues of disability that I normally address. Because today I want to delve into something a wee bit more controversial. Well, I am informed it’s controversial, I didn’t really realise it was and that’s the issue here. If I’m not being clear, let me start from the beginning and explain.
Last week, marked a slightly unwanted first for my online life, I got in my first Twitter argument. It all started because I commented on a Tweet posted by a person who, for reasons of privacy, I shall be calling Mr. X. He was commenting on ITVs programme What’s Your Miracle? which shows people with various disabilities undergoing pioneering medical treatments in the hope that they will help them. I must confess that I didn’t actually watch the show. It clashed with my No.1 favourite programme Elementary and nothing gets between me, Jonny Lee Miller and Lucy Liu. Anyway, Mr. X made the comment that he thought it was a shame that ITV felt the need to make a programme showing curing disabled people as a positive thing and they wouldn’t make one about homosexuality. I replied that personally, and I want you to keep in mind that I was only speaking for myself in this, if there was a cure for Cerebral Palsy (one of my impairments) that I would be the first in the queue. I also pointed out that sexuality isn’t as physically apparent as disabilities and people can choose whether they want people to know that they’re gay or not where as my disability is always obvious to those I meet. What I received next from Mr. X was a torrent of abuse, accusing me of being not only homophobic (something I am far from) but a ‘medical modeller’ who ‘didn’t like every aspect of themselves’.
I was shocked by such a reaction to what I believed was an innocuous, comment but more than that I was deeply irritated by Mr X’s disregard for my personal feelings and experiences and bizarre belief that I should feel proud of an aspect of myself that has caused me a lot of physical and emotional pain. I totally understand where Mr. X is coming from. His attitude is understandably born out of the noble beliefs of the disability rights movement that people’s disadvantages are born out of the inability of society to accommodate their needs. But this viewpoint, however well intended, tends to cause the development of an attitude that every discomfort and problem faced by a disabled person could and would vanish if society changed. That any feelings of unhappiness and inequality that would or do remain should be viewed as a weakness in character. I dislike the arrogance held by individuals such as Mr. X that because he is totally happy and capable of embracing his disability so should everyone else, and the desire to make life easier via changing their physical state is wrong and should be derided. You can never truly know a person’s history or view upon the world that affects their beliefs and sadly just as some of us are born or acquire disabilities not all of us are blessed with a constant resource of inner strength. It’s very easy to sit back and decry the faults and flaws in others while holding up a moral ideal of how the world should be, but each of us are human and, as Mr. X is so keen to point out, influenced by the world around us.
When I was younger, I admit that my disability didn’t affect me as much psychologically as it does today but events in my personal life as well as deteriations in my health over the last decade has left my confidence shaken and I do wish that I didn’t have to deal with a lot of the personal difficulties my impairments brings. I know wishing for a magical cure is folly but if an easy answer to my problems did appear, what’s wrong in saying I would take it? I sometimes feel that there is an enormous pressure on disabled people not to show they feel any vulnerability and while its an admirable sentiment it seems to condemn anybody who is perhaps struggling to come to terms with certain aspects of their lives. There are, I’m sure, many individuals who view the pain and medical difficulties they face as well as the negative attitudes of others as an arduous daily challenge they could do without, something they must overcome through effort, not willingly embrace. While I find it hard to disagree when Mr X says that your disability does play a major part in moulding your character, it doesn’t mean that everyone can be grateful for the influence that it has on their lives.
I don’t begrudge Mr. X his opinion but he should remember he doesn’t speak for everyone and his view, although politically ‘on message’ doesn’t necessarily chime with the reality of many people.
But I think my main problem with Mr. X’s attack on me is that he is in a very prominent position within the media and has built quite a career as the ‘official’ talking head for panel shows and the like with regard to matters of disability. In a way, I understand his passion at attacking me. It is born out of a lifetime being immersed in the disabled rights arena where everything is a fight or a confrontation. Such a difficult environment can leave an individual with a chip on their shoulder and a permanent attitude that anyone who utters a single negative comment about any aspect of disability needs to be shouted down at once. But while it is important to continue to battle to change attitudes, I tend to find that those who are active within the area of disabled rights, and I include myself within this criticism, is they can end up fighting for what is right for them as an individual, with the onus on their own unique needs and desires and forget that other people with different disabilities may have other goals. When you start to decry or belittle others who also have impairments, you are in danger of losing focus on the very aim you are fighting for. It is an impossible task to fit the experiences and attitudes of your life, living with your disability to those of someone else with an entirely different impairment.
Let me give you an example of an instance when I found myself fighting for the ideal concept of disabled rights against someone whose reality was different. I work three days a week at a social firm which I enjoy. A friend of mine who is also disabled but who, to me, appears very capable and intelligent doesn’t work. For ages I did my best to convince her that the firm where I worked could support her and that if she wanted she could have a place there. I thought that having a job would benefit and help her because it did me, despite her saying she wouldn’t be able to cope. I thought she was being unmotivated and just didn’t want to work because no-one expected it of her. But then I realised that I was only meeting my friend for maybe an afternoon a week where she seemed fine, healthy and capable. I had no idea how tired those few hours left her or what the extra office hours would do to her health or care routine. I was applying what I wanted and could do to her just because we appeared to had similar disabilities. My friend ran her life the way she wanted and got out of it what was right for her. What right had I to badger or look down on what she wanted and did just because it didn’t match up to the ideal that as an disabled person we should all be fulfilled and strive for a normal life.
But getting back to the subject in hand, ITV’s show was called What’s Your Miracle? and for the people featured, the groundbreaking medical procedures they CHOSE to undertake were miraculous and by broadcasting them ITV might inspire and inform people with similar conditions on ways they could change their lives if they felt the need. If there was a operation to help me then yes, I may have it because it’s my life. No-one is going round forcing these people to become able-bodied and leave this mystical tribe of the so-called ‘disabled community’. It’s their decision and they shouldn’t be condemned as not loving themselves because of it just as I and no-one else has the right to call Mr. X a fool for saying he doesn’t see his impairment as negative. The world does need improvement for disabled people but why can’t that change be both medical AND social and allow people a choice?
In this blog, I try to make it clear that the views expressed are solely my own, one singular disabled woman with a unique set of beliefs and experiences. Anyone reading this site looking for a guide on the correct way to treat disabled people or a universal vox pop on the mindset of someone living with an impairment will be very disappointed. If Mr X is happy with his life, (and he has made a good career via his disability) then I don’t blame him for not wanting to change. But it doesn’t give him the right to attack me or anyone else.