On choosing a “cure”

Given the recent news of the attack on a care centre in Japan by an individual who believed that disabled people were just better off dead, I thought it was a good time to write about what a “cure” means. Especially because people do not realise that disability isn’t a binary of disabled/non-disabled and it can be incredibly more complex than people know.

An article I read called “Mental Disorder or Neurodiversity?” presented a variety of perspectives on mental illnesses, neurological conditions such as depression, autism, and ADHD and talked about the push to recognise these conditions instead of “disorders” as “neurodiversity” due to disability stigma.

The article recognised that there are very real issues that people with these conditions face and serious impairments that create obstacles in their lives. That got me thinking about what I would “cure” and what I wouldn’t.

My own experience

First, I’ll make it clear that, while I have a range of disabilities, my disability experience is very specific. I’m very aware that in many situations I “pass” as an able bodied individual. A great many of my disabilities are “hidden” or people don’t realise I have them until they speak with me for an extended period of time or I disclose them.

I feel like that has a huge impact on my perception of my disabilities and I know for a fact that there’s a marked difference in the way people treat me when they assume I’m “able bodied” and the way they treat me after they discover my disabilities.

When I think about what I would “cure” and what I wouldn’t, I think about what has a massive negative impact on my life. It’s complicated because I believe every facet of every part of me has contributed towards being who I am. And, for the most part, I like who I am. Even the things which have caused me a great deal of turmoil have contributed towards the individual I am today.

So, even those things which I would “cure” now, I would never choose to start my life without these difficulties. I would never choose to start my life without any of the negative and horrible experiences I have had, even if I were to end up more “successful”. Mostly because I believe I would be a different person and I’m not sure how I feel about that. But if I could “cure” something now? What would I choose?

Among the things that I would choose to cure would be my anxiety, the inability of my congenitally malformed brain to alert my body to produce hormones such as cortisol and thyroid, though I would probably leave alone my body’s inability to signal the production of oestrogen, unless I could be guaranteed to make the exact same amount of oestrogen that I’m currently required to take (if none at all). I’d like to not have to worry about having panic attacks and to be rid of being triggered by certain things. Both of those “cures” are more about convenience than anything.

But, if given the choice to “cure” the blindness in my one eye… I’m not certain I would choose to do that. I currently have what’s called Optic Nerve Hypoplasia in one of my eyes, which means that my optic nerve is degenerated. I’ve heard of cases of stem cells being used to regrow the optic nerve and even of a child that had ONH in both eyes and was able to see again. After considering it for awhile, I don’t think I would choose to undergo stem cell replacement on my optic nerve.

Curing Aspergers or autism

I wouldn’t choose to “cure” my autism or differences in communicating. I would like to learn how to communicate more effectively with others, but I don’t think that I have to be “cured” in order for that to happen. Some of the things that autism gives me outweigh the benefits of “curing”. Sure, maybe I have a small selection of interests that don’t appeal to a larger part of the population, but once I find people who share my interests, I often don’t feel alone.

And even if I were the only one interested in social justice concepts, sexual health, or geeky things, I don’t think I would mind all that much. I mean, it would get lonely, but I wouldn’t mind. Because the things that I love give me so much enjoyment and entertain me so well, I would much rather know how many sickles is in a galleon than to be as bored with life as so many others seem to be.

Geordi was a constant inspiration to me on Star Trek. When my vision quality decreased and there was real fear when I was 7 that I would go blind soon, Geordi gave me faith that maybe one day being blind meant I could not only see, but see BETTER than sighted people in some ways.

Negative impacts

There seem to be two requirements that would cause me to reach for a “cure” of a condition. The first being that the condition has to overwhelmingly negatively impact my life or have very little positives. My anxiousness does overwhelm me. And it does impact my abilities to do certain things or just enjoy being happy. My anxiousness came from my brain trying to protect me and now it’s harming me instead.

Whereas, I’ve always been blind in one eye. Yes, I bump into things now and then, I sometimes miss when someone’s handing me something, and I can’t see in 3D (which has only become more of an access problem recently), but otherwise, I don’t really feel my blindness negatively impacts my life.

In fact, I think being blind in one eye has theoretically helped me in many aspects. It makes me think about how differently people literally and figuratively look at the world. Yet, I’m faced with the very real inevitability that I will one day be completely blind, as most people with my disorder are.

And I’m not sure now that I would necessary stop that process. I’ve been living with the “threat” of being completely blind since I was 7 and part of me had already accepted it as a reality. I suppose if I ever come to that bridge, I’ll decide if I want to cross it or not. I’m aware that being fully blind would impact my life significantly, but I’m hesitant to subscribe to the idea that being sighted is always immediately better.

Networks of support

The second condition for causing me to reach for a “cure” is more or less the environment surrounding me. In many cases, if I can find people like myself, the problem is somewhat lessened.

If I have narrow interests, I just find people who share my narrow interests. And in many cases, some of the ways in which I am “disordered” wouldn’t be so problematic if the world were set up to accommodate me.

If most people required refrigerated medicine, having access to fridge wouldn’t be such a huge issue. If most people in the world found social interactions difficult and draining, I wouldn’t find it so awkward to cancel plans sometimes last minute or request time and space alone.

In some cases, like with my focused interests, finding others helps. But in the case of my anxiety, I have it whether or not others have it as well and I still experience the negatives with or without the support of others. The support of others helps, but the experience stays the same.

Treatment vs. a cure

I realise that for some the exact same conditions and circumstances would create something completely different for them, and they may wish for a cure. In many cases, I think that I prefer a treatment over a cure. In the case of some of my anxiety and paranoia, I think I would prefer to treat it myself than to “cure” it, because I want the ability to overcome some of the issues myself, as silly as that may sound.

It’s a complicated situation because, while on the one hand a lot of my disabilities and disorders create difficulty for me, I feel like “curing” or choosing that option is somehow admitting that I am less than.

Geordi was also particularly inspiring because the only other exposure I had to blind people was a person called Duncan in Robin Hood: Prince of Thieves who wasn’t particularly constructed as an inspiring character.

Born unequal

And in many cases, I will admit that I have a significant disadvantage. Whenever I get into debates about anarchy and destroying systems of power, I always bring up that abolishing formal hierarchies doesn’t destroy the hierarchy of life. I don’t make certain hormones and without adequate replacements, I will die.

I was born into a hierarchy wherein everyone who does make this hormone gets to live and I don’t. Removing formal hierarchies doesn’t rid me of being what I hesitate to call “born unequal”.

But I don’t think being born without the capacity to make certain hormones or sight in my left eye makes me theoretically less than other human beings. I don’t have the same abilities, but I don’t think that makes me less valuable as an individual, but unfortunately there are many people who see my requirement for hormones to survive as a drain or a leech on society and that I have to prove my usefulness to justify that.

Yet people without issues like this may be a drain on society, may never enter a profession where they truly do any good for anyone, yet they never have to prove their worth in the same way I do.

Whenever discussing something like a “disorder” or a “disability”, I think a well rounded approach is always the best. Never assume that anyone with a “disorder” or “disability” feels the same about it as others might. Try to avoid focusing so much on problemitising every instance where someone is different or may have a detriment.

While the suggestion of “curing” certain things may be a really complicated thing that individuals can only speak for themselves, I think the approach people take to “disorders” and “disabilities” should change to focus more on admitting a difference without automatically assuming deficiency because of that difference.

Or that if there is a deficiency, it somehow makes someone less than human. Let others define what is and isn’t a deficiency within their own experiences, rather than assuming that because someone can’t do what you do, they must automatically have a worse time.

It’s complicated enough for me to think about whether or not I will choose to become sighted if I go blind without having someone with no experience or understanding of my disorder decide how I should view it myself.

Related articles

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Trans identities as disorders

Stop romanticising mental illness

What it’s like to live with anxiety

Disability, consent and bodily autonomy

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