Finding a cure: Navigating societal prejudice and the importance of choice

Facebook, that place where many of us share too much, myself included. I’m browsing through my news feed, past memes and discussions of religion. It’s then I hear it. Gene therapy. These words are not new to me, I first heard about studies that aim to treat my specific form of blindness when I was around thirteen. My reaction over the years to those words has however changed considerably.

Back then I would have done anything to be cured. My hands reaching out to grab onto something that would give me the things I felt I’d been denied. I bargained with myself. Express your interest in the trials and you’ll never have to fight to be included again. Tell everyone you know about them and they’ll feel differently about you, because you’re trying, you’re fighting it. I looked at how people saw me and turned it in on myself, if I could only make myself less disabled, I would receive acceptance.

What now though? It’s undeniable that I am far more comfortable with my blindness than I was 9 years ago. I have had the privilege of meeting, and working with other disabled people who are incredibly comfortable with being disabled. I’ve learnt about disability culture, the social model of disability with its merrits and failings and most importantly I know how to advocate for myself. These things have had an incredibly positive impact on my life. I also believe that with the right tools and skills blind people can live complete, successful lives. I watch my friends get jobs, have children, travel, write, be happy. There is nothing missing in their lives, and knowing this has certainly changed my outlook on being blind.

But I also know blind people who want to find a cure. Wonderful, compassionate, strong people who understand, and promote disability advocacy but are honest that they still, if they had the choice, wouldn’t be blind. And their impact on me is huge. Because they taught me something else, that to want a cure isn’t the same as being ashamed of who you are.

I am, as I’ve expressed before deeply thankful to my parents that they didn’t pursue seeking a cure when I was a child. They did not prescribe to the notion that blindness is the equivalent of living death, that I will grow up in a dark, lonely world. I was allowed to explore my identity as a disabled girl, to find a place where I’m comfortable, learn new things about myself and move on to an even deeper understanding.

And here’s what I now know to be true. Cures aren’t evil, or bad, or dangerous things. But the way society views disabled people has the potential to make them so. Most of the disabled advocates I know that actively speak out against the narrative of curing us do so because typically it focusses on why being disabled is a life simply not worth living. I am terrified of parents who, through love, raise thousands and thousands a year in the name of curing their child. So often the organisations they are fundraising for promote the idea that to be disabled is an awful existence. The message that sends to disabled people, especially children is extremely disturbing.

But there are also disabled people working to find a cure for their specific disability. Passionate, articulate people who explain that whilst they would not choose to be disabled, they believe that it should be a personal choice. If a cure, or treatment is found no disabled person should be forced to use it. They actively work to promote potential treatments as simply a choice, and stress that they should not be used to force disabled people to give up what might be one of the most important aspects of their identity.

But I, and I imagine they, still have that fear. What if a cure is found? What will society do then? Will disabled people be incentivised to make use of it, receive the treatment or lose any kind of governmental support. The disabled community may understand the nuances of identity, choice and medical advancements, but do other people? How much choice will we ultimately be given over our lives, what is more important, identity or the pursuit of biological perfection?

Where do we go from here? I don’t have the answer to that question. I hope that societal attitudes will shift to allow people to make choices about their lives without judgement, whether that be to pursue treatment, or to express satisfaction with their disabled identity. That we can continue to advocate for accessible spaces whilst respecting that there are people within our community who do want to seek treatments. That those of us who feel our identity as disabled people is one we want to retain are not viewed as less than, that others accept many people do not want to focus on minimising their disability.

It is not the desires of the disabled community, whether to seek a cure or embrace our identity, that is harmful. The inherent bias of societal attitudes that demand we do everything within our power to appear less disabled is what hurts us. It manages to simultaneously forget, or actively shame, those who choose to affirm disability as a sense of self, whilst ignoring the complexities of searching for treatments.

Where do I fit in all this? I still don’t know, every day my identity changes, it is developing, an ever growing sense of self that I struggle to convey through words. I cannot say, at this moment, what choice I would make if presented with a treatment plan. But I know for certain that I would want it to be mine alone, free from the prejudice that dictates I must currently despise who I am.

Further reading

  1. BK Green left a comment on January 9, 2017 at 8:41 am

    I was in hospital for eight days last month for surgery on my eye and post-surgical monitoring. I’ll be on the operating table again in about eight weeks for the second procedure. If I hadn’t volunteered for treatment I reckon that I’d have been lucky to retain my residual vision beyond the year 2030 and the rest of my body should be able to last that long due to me having no additional health problems at this time.
    I feel quite guilty about electing to have surgery because I know that a lot of blind people have conditions that damage the nerve centres deep beneath the ocular surface and that these are much more awkward to treat; you mention that many blind people would be aghast at the idea of their vision being improved through invasive treatment: my own father is a member of this class and therefore I can verify your findings that those people are happy, well-adjusted, active, intelligent and mature men and women. Nevertheless those people and many other disabled people often find themselves in situations where they are on the receiving end of a very narrow-minded attitude that a lot of able-bodied people possess (by the way I ardently admire your efforts to make this stigma a thing of the past). This is in spite of the United Kingdom, a G7 nation, having a blind Home Secretary and a partially-blind chancellor (who then became prime minister) since the start of the millennium.
    One day I hope to compensate the blind community for my selfishness by teaching young blind people to use assistive technology, read braille or play musical instruments. I am still a bit clueless as to how one gets in to this line of work or whether or not a formal teaching qualification is required but I’ll do it somehow. I start working in Italy in a few months and I’ll keep my friends in the know about my unnatural ocular modifications.

    • Holly left a comment on January 9, 2017 at 3:19 pm

      I don’t think it’s selfish at all that you’ve made the choice to try and retain your vision. We all have to do what’s right for us as individuals, and for some of us that is working to keep, or improve our vision.

      Also working in Italy sounds incredible, I hope you have a wonderful time.

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