As promised in my recent technology post I wanted to touch upon Science and Disability.
Before we get going, I want to clarify that I’m not a professional in the science field and I’ve not geeked out before writing this post with books. I’m just a disabled guy observing a few recent news stories and pontificating on them.
Ever since I can remember I’ve never had many dark days about my disability. Of course as a kid I wondered sometimes why I was ‘different’. The realisation I wouldn’t play football in the Premier League hurt for a week or so. The fact one-night stands were harder to get in nightclubs was frustrating, until realising I wanted something more meaningful anyway.
Eventually I worked out I either could do things in my own way, or I could concentrate on different, but equally great, things instead.
It was only when I worked for the disability charity Scope that the concepts of the Medical and Social Models entered my life. I’ve written so often about this I don’t want to repeat too much. Essentially the Medical Model places the person with a disability as the problem and they need to be cured. The Social Model places society as the problem, because it is their barriers that disable a person – not the condition.
Due to my positive nature and my philosophy of living life with the cards you’re dealt, I never grew up waiting to be ‘cured’. My time at Scope understanding the Social Model liberated me further because I could show society my value and justifiably request they remove these unnecessary barriers.
Today I still have my personal philosophy and keep asking for the barriers to be removed. However, government and society seems to at best not understand our situation, and at worst ignore our requests. Pragmatism could argue that having more physical strength would be the answer after all.
We’ve already looked at the enabling power of technology. Apart from Artificial Intelligence taking us over, it’s a less ethical argument in my opinion. We already have wheelchairs, hoists, adapted cars and beds; technological support is just a further progression of this.
But just like in the Matrix, would I and would you take the red or blue pill?
So much research is going into treatments for mending and replacing damaged cells. We’ve moved on a lot from electric shock treatment and chemical remedies. Would we take a cure if it was offered?
Overall I cannot say I would categorically not take a cure. The idea of turning myself over in bed at night, going to the toilet and shower alone, cooking dinner for my loved ones for a change sounds nice. If a fool proof cure existed and so on – hey why not!?
The concerns for me and the reasons I would currently say no are: There’s no such thing available at present and so I can’t live for something that isn’t real. I also like me and my life as it exists today. Why fix what ain’t broken? Any cure could have crazy side effects… Why risk your actual health? Even if I was cured, my body is so ruined from my spinal fusion, tight joints and atrophied muscles it would take years of rehabilitation – years I’d rather have living and enjoying the moment.
Equally any treatments that stop remissions or even improve strength are worth exploring. But with the same precautions as above. In my next post I’ll share how I manage my health and wellbeing alongside having a disability (because everyone needs to look after themselves, disabled or not).
I recognise this is only my personal view. Anyone with a differing view because they’re more pragmatic, unhappier with their cards, fed up with waiting for society to change, or looking to better future generations lives through medical intervention; go for it.
We all have these personal choices to make thanks to amazing advancements in science.
Just please consider everyone’s individual and personal choices, believe in society’s ability to be inclusive, and understand where our idea of a ‘perfect human’ begins and connects to physical attributes only.
I might be weak in body but I’m happy, healthy, intelligent, and comfortable in this skin. We’re all interdependent on each other and ever more so on technology these days.
Lets rethink what equal opportunities means before we get carried away. Diversity and Variety are after all the spice of life.
Martyn
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