{"id":17667,"date":"2013-09-09T14:42:50","date_gmt":"2013-09-09T21:42:50","guid":{"rendered":"http:\/\/amptoons.com\/blog\/?p=17667"},"modified":"2013-09-09T14:46:46","modified_gmt":"2013-09-09T21:46:46","slug":"the-idea-of-a-cure-doesnt-offend-me-the-idea-that-i-ought-to-be-waiting-or-looking-for-that-cure-is-offensive","status":"publish","type":"post","link":"https:\/\/amptoons.com\/blog\/?p=17667","title":{"rendered":"The idea of a cure doesn’t offend me. The idea that I ought to be waiting or looking for that cure is offensive."},"content":{"rendered":"
\"Photo

Photo of Harriet Mcbryde Johnson, activist and lawyer, because Amp is a big fan of her writing.<\/p><\/div>\n

In another thread<\/a>, Ender left this comment:<\/em><\/p>\n

I\u2019m 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 \u201cdisabled\u201d or \u201chandicapped\u201d not actually want to be made more \u201cnormal\u201d? 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?<\/p>\n

To but my question more concisely, is the idea that a person\u2019s disabilities could be cured offensive to people with disabilities? Should scientists be working on gene therapy and prosthetics and brain research?<\/p><\/blockquote>\n

Kay, of the no-longer-updated-but-fondly-remembered blog The Gimp Parade<\/a>, left this response. With Kay’s kind permission, I’m reposting it as a post.–Amp<\/em><\/p>\n

\n

To answer concisely for myself, no. And sure, why not?<\/p>\n

The idea of a cure doesn’t offend me. The idea that I ought to be waiting or looking for that cure is offensive.<\/p>\n

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.<\/p>\n

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.<\/p>\n

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.<\/p>\n

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”.<\/p>\n

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.<\/p>\n

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.<\/p>\n","protected":false},"excerpt":{"rendered":"

In another thread, Ender left this comment: I\u2019m 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 \u201cdisabled\u201d or \u201chandicapped\u201d not … Continue reading →<\/span><\/a><\/p>\n","protected":false},"author":46,"featured_media":0,"comment_status":"open","ping_status":"open","sticky":false,"template":"","format":"standard","meta":{"footnotes":""},"categories":[24],"tags":[],"class_list":["post-17667","post","type-post","status-publish","format-standard","hentry","category-disabled-rights-issues"],"_links":{"self":[{"href":"https:\/\/amptoons.com\/blog\/index.php?rest_route=\/wp\/v2\/posts\/17667","targetHints":{"allow":["GET"]}}],"collection":[{"href":"https:\/\/amptoons.com\/blog\/index.php?rest_route=\/wp\/v2\/posts"}],"about":[{"href":"https:\/\/amptoons.com\/blog\/index.php?rest_route=\/wp\/v2\/types\/post"}],"author":[{"embeddable":true,"href":"https:\/\/amptoons.com\/blog\/index.php?rest_route=\/wp\/v2\/users\/46"}],"replies":[{"embeddable":true,"href":"https:\/\/amptoons.com\/blog\/index.php?rest_route=%2Fwp%2Fv2%2Fcomments&post=17667"}],"version-history":[{"count":2,"href":"https:\/\/amptoons.com\/blog\/index.php?rest_route=\/wp\/v2\/posts\/17667\/revisions"}],"predecessor-version":[{"id":17670,"href":"https:\/\/amptoons.com\/blog\/index.php?rest_route=\/wp\/v2\/posts\/17667\/revisions\/17670"}],"wp:attachment":[{"href":"https:\/\/amptoons.com\/blog\/index.php?rest_route=%2Fwp%2Fv2%2Fmedia&parent=17667"}],"wp:term":[{"taxonomy":"category","embeddable":true,"href":"https:\/\/amptoons.com\/blog\/index.php?rest_route=%2Fwp%2Fv2%2Fcategories&post=17667"},{"taxonomy":"post_tag","embeddable":true,"href":"https:\/\/amptoons.com\/blog\/index.php?rest_route=%2Fwp%2Fv2%2Ftags&post=17667"}],"curies":[{"name":"wp","href":"https:\/\/api.w.org\/{rel}","templated":true}]}}