On ‘fixing’ disability

Molly Burke, a blind YouTube vlogger, posted a video of her speech last month at the London (Ontario) Music Hall as part of an evening on “Belonging” organised by the Walrus, a Canadian magazine and educational foundation. Molly told us about her condition (retinitis pigmentosa), the experience she had of people trying to ‘fix’ her condition which, in fact, was incurable and degenerative; she lost most of her sight at age 14. She argues that society should work on fixing itself so that a disabled person can live an independent life, rather than on fixing ‘disability’ itself. Here’s the video:

In the comments under this video, there is a debate about whether people should in fact strive to fix disability and one accused Molly Burke of “throwing the medical professionals working to cure the multitude of disabilities people face today under the bus” because “being blind, deaf or paralysed is in no way good or beneficial and we should strive to eliminate these things from the lives of future generations”. Others argued that disability costs money, including such things as adding accessibility features to mobile phones, as Apple does with all of its devices, something Burke mentions as allowing her to simply buy one and get to work with no help from anyone else.

First, the argument that calling for adaptation over cure is “throwing professionals under the bus” is ludicrous. There just is no bus heading their way; they get paid handsomely (especially doctors) while the children often lose out from being subjected to intervention after intervention — multiple surgeries, or continual therapy that takes them out of school and away from their friends — which does not always produce results. Losing out on valuable school time because of hospital appointments and therapies is extremely common for disabled children. Burke mentioned in her speech that she missed out on a class trip, and was expected to go on a picnic with other disabled children and their extra teachers (or learning assistants) instead of an African safari, and missed out on French classes to learn Braille (admittedly an important skill for a blind person, but so is French in a country where a large tract is French-speaking). Children lose out on time actually living, are put at risk and may suffer pain, and gain nothing from it.

I’ve followed Molly Burke for some time; she has said in the recent past that she now would not accept a cure for her blindness if offered, although in our time, any such ‘offer’ would be an empty one. I must admit that I can’t understand not wanting to be able to see after having been able to (though not see well) until only five or six years ago (after decades, maybe), but I can understand not wanting to give up days or weeks in hospital in pursuit of a cure that will hurt and might not work, or only temporarily. People who are disabled or have chronic conditions are also often pressured to accept dubious or spurious therapies, expensive and time-consuming special diets or downright harmful quackery by people who tell them it will ‘cure’ or at least ameliorate their condition (autistic people are frequently targeted for such interventions), when they may just want to get on with their lives. They may not like their condition, but living with it is easier than fighting it, and they have accepted it but others refuse (or they may not have accepted it, and people take advantage).

I’m not suggesting there is no place for cures, especially for illnesses that leave people disabled, but adaptation is just as important, because disability is not going away; there will be no cure or fix for many impairments in our lifetime or our children’s and people have to live their lives the way they are. People are complaining that supporting disabled people costs money, but some of these costs can be offset by adaptations being built into technology or buildings, which is the whole point Molly is making in her video. Obviously, if it is possible to prevent someone going blind, that should be, and similarly if a painful degenerative condition that might leave someone unable to move can be arrested or cured, that’s great — but in the meanwhile, people have lives to lead and adaptation and acceptance are the only things that will allow them to live them.

Possibly Related Posts:


Share
  • adelaidedupont

    One terrific accessibility feature which is in all iPhone 10s is the Teletypewriter where you can go into Relay Chat [or its British or Australian version].

    iThings are also accessible to the blind.

    I was checking some websites the last fortnight or two.

    “Burke mentioned in her speech that she missed out on a class trip, and was expected to go on a picnic with other disabled children and their extra teachers (or learning assistants) instead of an African safari, and missed out on French classes to learn Braille (admittedly an important skill for a blind person, but so is French in a country where a large tract is French-speaking). Children lose out on time actually living, are put at risk and may suffer pain, and gain nothing from it.”

    And isn’t there - or shouldn’t there be - the Expanded Core Curriculum which is in a lot of US and Canadian schools?

    And there is Space Camp which lots of blind and deaf STEM-interested students love to go to. A picnic or pique-nique!

    It was interesting to read about your evolution in understanding over the past 5 or 6 years.

    “Obviously, if it is possible to prevent someone going blind, that should be, and similarly if a painful degenerative condition that might leave someone unable to move can be arrested or cured, that’s great — but in the meanwhile, people have lives to lead and adaptation and acceptance are the only things that will allow them to live them.”

    It currently seems less possible to prevent people from being deaf - as opposed to things like the cochlear implant - especially when it was because of illness.

    This is working more or less with dementia + motor neurone. The current things try to arrest for a long time. And then there’s early/young onset stuff which may work differently from the standard course or a late course.

    Pathways; lots of pathways!

    And I think the ratio between cure-work and acceptance-work/adaptation-work is in favour of the acceptance and adaptation group.

    I wonder if you have read To See and Not To See by Oliver Sacks?