The Complexities of “Curing” Disabilities

I can’t count how many times I’ve been asked variations of the question: “If there was a pill that could cure your disability, would you take it?” Though the short answer is a resounding “No!” I rarely get the chance to elaborate on the complex feelings and emotions that are behind my answer.

Here’s the long answer: I definitely have moments where the thought of an instant cure gives me pause. I wonder what life might be like as an able-bodied version of myself. I try to envision myself walking around the mall or running after a soccer ball. I try to picture myself climbing a tree or jumping rope. But thinking about these things is mind-bending for me because they’re not part of my life. And I’m okay with that. I don’t have a burning desire to walk or run or climb or jump like an able-bodied person, because such actions have never been part of my life to begin with. Since I was born with my disability, I don’t feel that anything was taken away from me. It’s simply not possible to miss something I never experienced.

I think “cure” is actually a rather loaded term in relation to my disability, because to cure something implies that you are returning the body to its normal state.  My disability is my normal state. To cure me in accordance with the medical definition of the word would not only give me new abilities, but also essentially transform me into a whole new person. I can’t imagine myself as an able-bodied person, because I never was an able-bodied person. I’ve embraced my disability as a huge facet of my identity, and I take pride in it.

While I don’t define myself solely by my disability, having a disability has undeniably shaped who I am. Without my lived experiences as a disabled person, I would be a completely different Emily. And as tough as certain aspects of my life have been, and though I know I will continue to face disability-related challenges throughout my life, I wouldn’t trade my life for a minute. My disability has given me a place in a community and a culture; it has been the reason why I’ve had amazing adventures and unforgettable experiences. To walk freely up and down stairs for one day would never measure up to the things I’ve done because I have a disability.

So, my answer is still no. No, I would not take a pill for a cure. That being said, it’s not my place to judge another person for answering “yes.” I understand that disability is a highly unique experience from one person to the next, and I can’t say that my opinions on “curing” disability are the only way to think about it. For instance, it is completely reasonable to search for cures for degenerative or painful diseases and disabilities. If I could take a pill to cure the pain I experience, I would do that in a heartbeat. But I don’t want to change who I am. We should be looking to cure the pain, not the person.

We should not be trying to cure disability or disease because society sees it as something to devalue. And for that matter, if the reasoning behind “curing” disability is about eradicating differences from society, then I think we should cure society’s ableism instead. We should make it a priority to eliminate access barriers and prejudiced mindsets, rather than focusing on eliminating disabilities. But to find ways to relieve symptoms and improve quality of life for people – those are the right reasons to support finding cures.

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Comments

  1. It is a tough question – and the answer will vary with the person – and the disability, as you have noted.

    I am in the odd position of having been offered – and taken – a sort of pill to remove a significant part of my disability.

    A bit of background: I was working as a research physicist, with two little boys, when I came down with the CFS which has never left me in 24 years. I lost the ability to do the thinking and computational physics that was the basis of my sense of ME. We coped. I had a little girl, ended up homeschooling the 3 of them a few years later (hey – I was home, and I didn’t have the energy to battle a school system for their education).

    Just recently, based on some Italian research, someone discovered that megadoses of vitamin B1 help some CFS people with the exhaustion, brain fog, and pain – and I turned out to be one of the lucky ones : it works for me. Sort of. It gives me about 20% more energy, lets me think a bit better, and helped with the pain.

    If I could take the right amount, if there WERE a ‘right amount,’ and I could be the me I lost, I would take it in a flash.

    I see where you’re coming from. I also see how much I have NOT gotten ‘back’ – and how much I’ve learned about the world and myself by being disabled. I would not give that up – it is too hard earned – if that were the price.

    Plus it hasn’t really been offered, has it?

    If not disability, it’s going to be old age, of loss of loved ones, or an automobile accident. All these things are important parts of growing up. If we use them so.

    Glad t have discovered your blog.

    1. Thank you so much for your thoughtful response! I most certainly see where you are coming from, especially because the onset of your CFS was later in life, so there was a different “normal” for your mind and body at one point. And yet, you make an excellent point that your disability has given you unique perspectives, and those are truly not worth giving up.

  2. I would say “no” because I believe that autism made me a better person. It makes me slow of tongue, which makes me think more about what I say.

  3. This is what resonates for me: “It’s simply not possible to miss something I never experienced.”

    While there are times I would love to have the gift of diplomacy or live without anxiety and rigid-thinking, I have enough benefits from my disability that I wouldn’t want to change myself. I also have fear of the unknown – I, too would be a completely different person without autism and I don’t know who that person would be. I would not have the amazing husband I have, probably, and therefore not my son.

    I don’t actually *know* what I’m missing. I have ideas, but I don’t actually know. And I’m pretty happy being me anyway.

    1. Kelly, I definitely agree! There’s so much of my disability that has shaped my life that I simply wouldn’t want it any other way because I don’t know any other way.

  4. It is a tough question, as you say. I, too, know nothing but life with disability – Spina Bifida, in my case. It would be scary, but I’d take the “magic pill.” I have no regrets about the life I’ve lived as a person with a disability; after all, it’s helped shape who I am and have been. I’d do it because – in my experience – living with my significant disability is damn hard. Impossible? No. Miserable? Certainly not 99.5% of the time. But yet and still, it’s damn hard. I’m not naive enough to believe that life would be perfect if I awoke able-bodied tomorrow, but I’d still love to give it a go.

    1. I love your openness and honesty. I often wonder what life among the non-disabled might be like, I’ll admit. And I absolutely respect your perspective because it’s so true – disability is rough. I’m glad you shared it 🙂

      1. Emily, I’m not entirely sure that it would be a BAD thing to be cured.
        I mean, I am autistic, and I sometimes think of present-day false claims for cures as similar to privatization of space travel and Mars colonization, which comes at a time when we haven’t even stopped carbon pollution. It reminds me of a proverb I saw in a book, “Of what use is the roof against the rains, when there are no walls to stem the flood?”. In other words: A cure will be great, but first we must work towards accomodation. A cure, if it comes (and I think there’s a 51% or greater chance it will by the end of the 30th century), will be our metaphorical reward for Learning to Accommodate Disabled and Designer (see below) Earthlings and Certain Non-Human-Like Aliens.
        Also, think about the yet-to-be invented artificial womb. Complete with Super-Fast Gestation To Adulthood, Really Safe Generation, and Designer People, it will be the first step towards a future in which no man or woman needs birth control, because every human is fully sterile, and one creates zygotes through drawing DNA from saliva (or animal blood) and placing it, however modified if need be, in a “blank” sperm or egg cell.

  5. Honestly I don’t think I’d take a magic pill either & I haven’t always been ill…
    My M.E. hit when I was 17 & took away my capacity to learn & my ability to accept the place at Oxford University I had been offered. I’m stuck in a home I hate, in an area that is getting rougher by the second & my relatives are convinced I am making myself ill but I swear this is what my body was always meant to be.
    Sometimes I wish my M.E. would stop degenerating so fast, maybe that I could have breaks from it & that maybe my brain hadn’t been affected so much. I kind of wish sometimes that I could walk further (because I love that I’m really tall & the wheelchair doesn’t show that) & I’d love for the pain, spasming & flailing to stop but this is who I am & I’m willing to take the rough with the smooth.
    I totally understand the need of people to research cures but I think a better use of their time (and a less ableist direction to their research) would be finding effective ways to control the negative symptoms like pain, spasming, brain fog etc.

    I wish people would understand that we don’t automatically hate our lives or feel trapped in our bodies because we are disabled. (Not that I don’t sometimes feel trapped, but that’s mostly when my body is being stupid or there was something I wanted to do that isn’t accessible).

    1. Sally – I think you have a whole amazing blog post topic in and of itself. It’s incredibly interesting how you say that you feel your body was meant to be this way. I always love the insights you share.

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