I am and remain a fan of the late and great Stella Young. I loved her views on inspiration porn. I loved her caustic wit as she spoke about people who would pat her on the head and others that would praise her for simply getting on a tram. For those that do not know, Stella was a short statured person and a wheelchair user. She had no time for people and a society that were obsessed with pitying people with a disability nor seeing them as objects to inspire. Her attitude is best summed by this quote,
“I dance as a political statement, because disabled bodies are inherently political, but I mostly dance for all the same reasons anyone else does: because it heals my spirit and fills me with joy.”
And that’s why we loved her so. She made us all human where others refused to see it
People with a disability and their associates mostly want disability to be seen positively. They want people to recognise the contribution that people with a disability provide to the greater community. They want people to recognise talents, personalities and a general human existence. That’s all people with a disability ask along with having the means to be active members of society. Unfortunately society does not always let this happen. Curing, fixing and pitying are usually the primary themes that come up when most people discuss disability.
However, disability is not always a great thing. Firstly because our society won’t let it. Secondly because disability can actually be painful and stressful. And thirdly disability can impact on a person at any time in their life. That timing of disability can be crucial. To suddenly have to adapt to losing function in ones body can be traumatic. Even people with a disability know this. Those with degenerative disabilities will tell you how frustrated that they become as their body steadily fails them. Sure, it is often society that compounds this but lets not kid ourselves, having a disability can be scary and a complete pain in the arse.
Of late this has hit me hard. I apologise in advance to all my deafblind friends because quite frankly what I am about to write is going too make me seem like a blubbering sook. True, I am, but I have no shame in owning up.
It started just over a year ago. I was playing in a tennis grand final. My middle son was playing doubles with me. In an attempt to save a winner he smashed the ball directly into my left eye from point blank range. For a few days I had blurred vision in my left eye but it seemed to clear. I recall, at that time, being absolutely petrified. Being Deaf my eyes are my ears. Being active my eyes are important too. Too play tennis, see movies, play golf, communicate .. they are my everything. So to lose my sight would, putting it mildly, turn my life upside down.
Over time my eye healed but about 8 or so months later I noticed my sight was getting worse. I thought I just needed new glasses and needed to see the optometrist. Of course being a male, and very busy, I put this off. I noticed over time I was struggling to see at night. I couldn’t play tennis under floodlights. It hit me one day, about 4 months ago, when I went to play golf. I had no depth perception and actually had to shut one eye to see the ball. I covered my good eye and realised that my other eye was actually so bad that it was actually legally blind. I almost shat myself.
I knew something was very wrong and needed to see a doctor. Of course I was scared and I put this off time and time again. Perhaps I was going blind. This scared me to high heaven. Knowing it and confirming it are two different things. So I did what a lot of males do. I took trip up a river in Egypt to denial. (De Nile)
Eventually I bit the bullet and went to the doctor. The doctor referred me for tests and to cut a long story short, the tests showed I had cataracts in both eyes. Thankfully this can be corrected with surgery. It is possible the whack from the tennis ball contributed, no one knows. The left is worse, in fact legally blind. Over time the right eye will progress to the same state. It’s not understating things to say that this scared me more than anything in my whole life.
In moments alone I would break into cold sweats and panic. At work I was struggling to see the computer when I was tired. When you are communicating and doing everything through one eye, and one that is not fully functioning at that, its tiring. When I get home I just collapse into bed.
To be frank, I was and am a wreck. I do not want to go blind. I don’t care about all those people that say to be positive about disability, going blind would be the worst thing that can happen to me. Being deaf is one thing, I’ve had forty two years too adapt to that. To suddenly be deaf and blind, well, no thank you. All the things I value would be gone. Sure I could adapt over time, but I don’t want to lose all those things that I value. I realise that these things, the sport, the movies, communicating, lipreading, signing, facial cues etc are the core to my being. I didn’t want to lose them.
I have been lucky because I do not have private health. I pleaded with the doctor to escalate my surgery. I argued that my eyes were my work, my communication and my access to the world. I argued that if my right eye, that also has cataracts, worsens quickly (and it is) I won’t be able to work or communicate. The doctor wasn’t particularly empathetic but the surgical nurses were. I called them and explained my situation, they got me into surgery within a week.
The surgery is next week. I am relieved. But most of all this experience has changed me. I realise even more now that the impact of disability is different depending on when the disability occurs. You cannot just say to someone that all will be ok and that people with a disability are living great lives and that they can too. It is not that easy. That period of adjustment and the loss of capacity to do so many things that you value is no small thing. It is huge and it is scary.
But still I love Stella and still I see disability as a positive thing. Still I think disability makes the world a better place for the diversity of experience that it brings. BUT make no mistake, being deaf is enough for me. The things that I like to do I want to keep doing for as long as possible. To not be able to do these things would have a really negative impact on my life. It is an impact that I have no wish to experience any time soon.
If that makes me weak and a sook, then so be it. I wish I was made of sterner stuff but I aint!