Photo of Harriet Mcbryde Johnson, activist and lawyer, because Amp is a big fan of her writing.
In another thread, Ender left this comment:
I’m planning on going into neurocognitive/computational research, which has or could have medical applications (amongst many other computer technology applications). My question then is, do people that are called “disabled” or “handicapped” not actually want to be made more “normal”? If a child were autistic, would it be wrong to artificially increase their social intelligence? If a child were deaf or blind, would it be wrong to either alter their development as a fetus, or artificially give them the ability to see or hear when they were born? If a person were born paraplegic, should we not give them the ability to walk?
To but my question more concisely, is the idea that a person’s disabilities could be cured offensive to people with disabilities? Should scientists be working on gene therapy and prosthetics and brain research?
Kay, of the no-longer-updated-but-fondly-remembered blog The Gimp Parade, left this response. With Kay’s kind permission, I’m reposting it as a post.–Amp
To answer concisely for myself, no. And sure, why not?
The idea of a cure doesn’t offend me. The idea that I ought to be waiting or looking for that cure is offensive.
The first twelve years of my life involved exploring a diagnosis, with some memorably painful tests. At 12, I was told that my neuromuscular disease most closely resembled a congenital sarcotubular myopathy very few people – mostly Hutterite boys – had been diagnosed with but that fell under the scientific research of muscular dystrophies. In my 30s I was told that the first diagnosis was most likely incorrect. Since I’m neither of the Hutterite gene pool nor male, this was not a surprising declaration. I was told my muscles were then too wasted for a definitive biopsy answer, though if I’d volunteer my cells up, the doctors/scientists would be most interested to have a look anyway. I declined. I’m not bitter about that, this is the cost-benefit aspect of my life and I am quite busy pacing myself.
In the meantime, I’ve been severely and progressively disabled since I was a teen. I’ve benefited from antibiotics, radiology, orthotics, wheelchairs both manual and electric, scoliosis back surgery, a feeding tube, a tracheostomy, and now, a ventilator. (A suction machine, an air mattress on my hospital-like bed, a nebulizer, steroid meds, computer adaptions, electric toothbrush, etc., etc.) I’m 44 and when is that cure coming? I haven’t really been waiting, but I read the science news and I know it’s not coming for me. Yet clearly my life exists through science and technology.
A cure is not a cost-free proposition. (Neither is any medical treatment.) It costs someone money or energy or time or courage or hope. For me, just living without expectation of a cure costs most of that anyway.
I think of myself as someone who has trained body, mind and soul like an athlete for my entire life to be alive as I am now. You might say I’ve learned to endure like a long-distance runner – I test my physical limits every single day. (There’s some beauty in that along with the hardship, btw.) Alternatively, you might say that as a lifelong disabled person I have some lowered expectations of what I can have as a physical being, thus making me more willing to live on a ventilator than a person in a catastrophic accident might be. Both perspectives are true and both shape my disinterest in a “cure”.
But it’s easy to get hung up on the language and the idea of the total fix. If you were told you could be better looking and cured of physical imperfections, just how many plastic surgeries would you have the money, energy, time, courage and hope for? After all, science tells us that conventionally attractive people have significant advantages in life. Science can “cure” or “fix” you. Are you offended? Don’t you want to be better? Do you see the dermatologist, buy the lift-up bra, get the calf implants, or what? Maybe you’re used to your level of attractiveness and the balance-point between practical self-acceptance and investment in self-improvement is a place you’re at without intervention. Disabled people can exist at that balance-point too.
All of this assumes actual access to the science and the cure, though, and that’s not a given for anyone, even in the developed world.
I’m reminded if the 6th (and final) season of Lost. The show depicted the lives of various survivors of an airplane crash on a magical south Pacific island. John Locke could not walk when he entered the plane, but discovered that he could once the plane crashed on the island. Physician Jack Shephard, another survivor, was skeptical of Locke’s story.
The final season included a parallel story line, seemingly showing how the characters would have lived had they never come to the island. (Well, kinda.) Anyway, we get to observe their heroic and villainous personalities projected onto a mundane, daily setting. In particular, the robust John Locke reverts to a frustrated guy in the wheelchair, pointlessly pursuing activities that his disability make unrealistic. Shepard gives Locke his card and suggests that he perform surgery to restore Lock’s mobility. When Locke’s long-suffering fiancé gingerly suggests that Locke accept Shepard’s offer, Locke has a moment of catharsis:
NO. He is tired of being a war with his disability – constantly comparing himself to what he was, and feeling lesser than. Henceforth he would banish deflating thoughts of what might have been and exhausting hopes about what might yet be. Instead, he would accept himself as he is – provided his fiancé could accept him that way, too. Together, they tear up Shepard’s business card, symbolically closing the door on old dreams and opening a window for new ones. It was an unexpected, moving, powerful resolution.
(Ironically, when a string of catastrophic events prompt Locke to “just let go,” Locke finds that he no longer feels emotionally wound up in the events of this world. With this tension discharged, Locke is freed to accept Shepard’s offer of surgery.)
Thank you to Kay for writing this thought-provoking essay and to you for posting it. I’ve never thought about what exactly a cure means to different people, how their own experience can shape the meaning of the term and its value to them. I’ve never thought about this stuff before, so, again, I thank you both.
I’m of two minds about this. I don’t really mind the physical limitations of my disability — I’ve got to wear some braces, and sometimes use a cane or crutches, and I know that it’s possible that I’ll need a wheelchair at some point in the future, and I know that I’ll be able to adapt to that — but if there was a way to magically make the chronic pain go away, I’d take it in an instant.