But What if I Don’t Want a Cure?

Hello readers,

As you probably know, it’s Autism Awareness Month. We’ve covered some information about that on this blog, such as whether “awareness” is needed or warranted for autism or any disability, when it is used to take the place of acceptance. Thankfully, some of the rest of the world has caught up, pushing more for autism and other disability acceptance all the time, not just a month out of the year. However, there is always more ground to cover when it comes to the disability rights movement.

I was inspired to cover more of that ground recently, when I came across some articles discussing what “cures” for disabilities really mean. For example, below, I’m going to post a link to an article written by a man who was able to have his autism somewhat “cured” by certain treatments. This man writes the treatment ruined his marriage, because his wife suddenly had a spouse she really didn’t know.

http://well.blogs.nytimes.com/2016/03/18/an-experimental-autism-treatment-cost-me-my-marriage/?utm_source=Facebook_GA_Paid&utm_medium=CPC&u

A few weeks later, a Facebook friend and I talked about corneal transplants as a cure for blindness. She, like me, is a writer. One of her books is a middle-grade novel called See No Evil, about a teen named Stephen who is blind. She has explained on blog interviews that in her original draft, Stephen was going to have a corneal transplant. He would then experience some of the fallout that accompanies these transplants. For example, recipients often find color and sight in general overwhelming. They may struggle to get used to concepts like peripheral vision.

I got yet another example from Hallmark, via one of their Hall of Fame movies called Sweet Nothing in My Ear. It’s based on a true story and is about a deaf little boy named Adam. Adam’s mother is deaf, as are her parents. Adam’s father and paternal grandparents are hearing. Mom could hear for a short time when she was little, but has since adapted well to deaf culture and being deaf. Her dad is a big proponent of the Deaf Pride movement.

You can probably imagine what happens when Adam is offered a cochlear implant. Suddenly the family is embroiled in controversy because of the question, does giving Adam this implant imply there is something wrong with him and therefore something wrong with being deaf? Is deafness a disability, and is it an insult to call it one? Should we wait until Adam is older and can make his own choice? There are a lot of deaf vs. hearing arguments, to the point that Mom shouts through sign language, “Deaf, hearing, deaf, hearing! I’m sick of it!” And well she might be, because she gets the fact that no matter whether you can hear or not, painting a line between “us” and “them,” and making her child’s health into an issue where people feel the need to take sides, is wrong.

Now, I first watched this movie way before I knew what a disability rights movement was. Yet, it still disturbed me on a subconscious level. I discussed it with my mom, hoping she could help me sort out whether I should root for real-life treatments like cochlear implants to work, or whether people with disabilities should be left alone. We didn’t come to any solid conclusions and I recognize some people won’t. Others may choose treatments or “cures”–but it needs to be their choice.

That’s why I wrote this post today. We’ve come a long way in treating disabilities as normal but we’re far from where we should be. Why? Because you can still see media touting the message, “Cure autism,” “Pray for a cure,” “Fight for a cure.” Because you still see parents holding out hope for cures–because they think absolute curing of the disability is the only hope.

See, that’s what really gets me. We have not yet accepted that there can be hope and joy in having a disability. Does it suck sometimes? Yeah, sure–but being a temporarily able-bodied person does, too. And before you argue that, “Well, some people with disabilities are lying in bed on feeding tubes”–it only takes one car accident, buddy. One car accident, one fall off a roof, one anything, and that person you pity…is you.

If instead we accepted hope and joy as part of the disability narrative, and if we accepted people with disabilities can do things and have futures, I believe “cure” would not be part of the narrative, or if it was, not a big one. Why? Because we would be able to accept that for many PWDs, the disability is an organic part of who they are. It is not a definition or excuse for maltreatment. It is, however, meant to be seen in a positive light.

We say to ourselves, and tell our kids, all the time that the world would be boring if we were all the same. To that end, we don’t expect blacks to lighten their skin tones, or LGBT people to become straight, or Orthodox Jews not to wash meat and milk dishes in separate sinks. At least most of us don’t–those who do are likely guilty of ignorance. Yet, we say to PWDs through words and actions,

“Don’t you want to be cured?”

“Wouldn’t your life be better without ____?”

Maybe not–and maybe we need to start listening. Because when a PWD says “I don’t want a cure,” that’s not giving up. That’s confidence.

 

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2 thoughts on “But What if I Don’t Want a Cure?

  1. This is a really important conversation and I really am pretty under-qualified to speak on it. I try to do a lot of listening instead, but if I were in a position where I had to make a choice for, say, my child regarding whether to “cure” a disability or not, I really don’t know what I’d do. For example, cochlear implants are considered much more useful if given to babies because, after a certain age, adjusting suddenly to the world of sound can be painful or unpleasant. But a baby can’t consent to the treatment or know the ramifications, plus there’s the question of the impact to the deaf community, plus theirs the implications of whether or not deafness needs to be “fixed” etc etc. What would I do? I have no idea. Probably read a ton of writing from deaf people and panic about it a lot. The same for many other “treatments”. It’s a choice I hope I’m not faced with, to be honest. 😛

  2. I don’t think any of us know what we would hypothetically do unless or until we are presented with the situation. I too hope that I would never be faced with that kind of choice. I don’t even know if I would accept a cure for CP. On the one hand, I would love that. On the other, it would mean confronting issues I haven’t had to deal with for 30 years. Just for starters, how do you go from needing modifications, to not needing any, and not having them as an option? How do you train your body to do what it suddenly has the *capability* to do but may not be ready for?

    All this said, the cure conversation is indeed an important one. We need to have it, perhaps multiple times. I sense, as medical science advances, it may become a very real and immediate issue for many people. My hope is that, if cures do happen, PWDs will be allowed to have as much say as possible, and will be fully educated on what the cure means.

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