3 ms·

I absolutely agree that lots of 'inspiring' disability coverage seems hostile and dehumanizing, celebrating changes that make disability invisible rather than t

I absolutely agree that lots of 'inspiring' disability coverage seems hostile and dehumanizing, celebrating changes that make disability invisible rather than those that help people. But a lot of social-model reactions to that actually give me the same feeling of being more worried about social perceptions than individual well-being. I'm sure this is influenced by my personal and first-hand experiences, which have mostly been about disabilities that produce pain or limited autonomy, without much in the way of support from design or devices. From that starting point, I'm hesitant to go too far down the road of prioritizing acceptance and accommodation over treatment; for some things there's just not much to be done outside of lessening pain or increasing function. As far as medical devices, I'm entirely on board with you. There's an overwhelming trend towards solutionism, promoting high-tech tools of dubious merit (or amateur replacements for quality devices) rather than focusing on the cost, reliability, and usability of basic tools. And realistically, a lot of those high-tech tools seem focused on decreasing the visibility and social impact of disability rather than improving quality of life for disabled people: a stair-climbing wheelchair could offer some value to the users, but it largely sounds convenient for the people who no longer have to worry about accommodating ramps, lifts, or stair chairs. Adapting environments to devices is often more robust and cheaper than the reverse, but it provokes a lot more negativity. But I'm a bit surprised to see this response on this story; surgical advances generally strike me as something with far more long-term potential and more patient focus than gimmicky new devices. A 'breakthrough' new wheelchair is quite likely to have insurmountable limitations, but breakthrough new surgeries often develop into reliable and commonplace treatments. As far as this specific work, the functional limitations improved from "no measurable grasp strength at all" pre-surgery to "enough grasp strength for most everyday tasks", which seems like a major and straightforward improvement. Autonomic dysfunction presumably didn't improve, but this surgery is being studied as an alternative to tendon transfers, which doesn't provide that either. Pain data appears to be in the study's full text, which I don't have access to, but several common and painful issues tendon transfers were avoided. Further, the treatment appears to already be competitive with or cheaper than other options, so it might become covered quite quickly - if not in the USA's insane system, then at least under national health plans. Most interesting to me, patients in the study were offered 'mixed' treatment of tendon transfer in one hand and nerve transfer in the other. By their self-report, they preferred the resulting adaptability to either treatment on its own. There are certainly ways medicine and society handles this sort of advance poorly, like focusing on numerical outcomes without prioritizing (or even asking) the views of the disabled person, or pressuring people to accept risky or painful treatments to decrease their care needs. But I very much don't see that in evidence here; the study was specifically designed to obtain subjective feedback from the patients, and the researchers choose to close their remarks not on celebrating a technical result but on emphasizing the importance of societal support and patient decision-making. I didn't get "heartwarming" from this but "cautiously optimistic". The lack of accounts from patients is unfortunate, but to my knowledge that's often (in stories about research) a function of privacy and ethics rules rather than disinterest in those voices.

disabled 7y ago
I definitely agree with you. Thank you for taking a look at this objectively. I really do appreciate it. A lot of this stuff is frustrating to me. I live with 2 rare autoimmune neurological diseases, with one of them being very rare, which changes the rules of the game, almost completely. I really should not be alive and I constantly worry about making a bad move medically because my care is complex. Even turning 30 felt like a milestone for me. I almost constantly have to worry about access to care, too, which is why I became a European Union citizen, in addition to being American. But, it is not due to typical things that people worry about like having access to insurance or paying for it. It basically is for logistical reasons. My training is in electrical engineering. From my standpoint, I can tell the difference between a gimmicky medical device and something that is promising. With surgeries, I would definitely say to a lesser degree, but I am always skeptical about the consequences. I also do not know how things typically play out long-term, especially living with rare diseases. I am always skeptical in general, and for good reasons. I have always been careful about what moves I make medically. I am also extremely stubborn, and perhaps that is why I am still alive. Either way, medicine in the past 10 years or so has started to change profoundly. I do think promising things will occur, perhaps on a timeline even. However, access to things, such as in the US, will be of a different story. That is another reason why stories like this bother me, even though it is far from happening logistically, in this case.
- Bartweiss 7y ago
  Thank you, this makes a lot of sense and it's really interesting to hear. It's depressing how often 'disability' gets reduced to a single quality, as though changes have a standard effect on disabled people as a group. Our different experiences seem like a great demonstration of that. On one hand, complex care that makes "brilliant" new solutions unlikely to do anything, and a distraction from access and support to existing care. On the other, issues so straightfoward that access to care and social support are largely meaningless - but also leaves me with an eye on shiny new advances because existing treatments start and stop at pain relief. As an aside, I really appreciate the point about relevant training - I do worry that there's a "Gellman amnesia" issue here where I'm acutely aware that I should be skeptical of motorized medical devices or brain-training games, but don't have an adequate skepticism about drugs or surgery. I think medical devices really are singularly prone to ludicrous overpromising, but it's hard to know how much of my doubt should extend to other topics. I wish you well, and I hope the mundane business of living and getting care goes as well as possible. There's a lot of interesting change on the horizon, but people shouldn't let it overshadow improving lives however we can today.

disabled 7y ago

I definitely agree with you. Thank you for taking a look at this objectively. I really do appreciate it. A lot of this stuff is frustrating to me. I live with 2 rare autoimmune neurological diseases, with one of them being very rare, which changes the rules of the game, almost completely. I really should not be alive and I constantly worry about making a bad move medically because my care is complex. Even turning 30 felt like a milestone for me. I almost constantly have to worry about access to care, too, which is why I became a European Union citizen, in addition to being American. But, it is not due to typical things that people worry about like having access to insurance or paying for it. It basically is for logistical reasons. My training is in electrical engineering. From my standpoint, I can tell the difference between a gimmicky medical device and something that is promising. With surgeries, I would definitely say to a lesser degree, but I am always skeptical about the consequences. I also do not know how things typically play out long-term, especially living with rare diseases. I am always skeptical in general, and for good reasons. I have always been careful about what moves I make medically. I am also extremely stubborn, and perhaps that is why I am still alive. Either way, medicine in the past 10 years or so has started to change profoundly. I do think promising things will occur, perhaps on a timeline even. However, access to things, such as in the US, will be of a different story. That is another reason why stories like this bother me, even though it is far from happening logistically, in this case.

Bartweiss 7y ago
Thank you, this makes a lot of sense and it's really interesting to hear. It's depressing how often 'disability' gets reduced to a single quality, as though changes have a standard effect on disabled people as a group. Our different experiences seem like a great demonstration of that. On one hand, complex care that makes "brilliant" new solutions unlikely to do anything, and a distraction from access and support to existing care. On the other, issues so straightfoward that access to care and social support are largely meaningless - but also leaves me with an eye on shiny new advances because existing treatments start and stop at pain relief. As an aside, I really appreciate the point about relevant training - I do worry that there's a "Gellman amnesia" issue here where I'm acutely aware that I should be skeptical of motorized medical devices or brain-training games, but don't have an adequate skepticism about drugs or surgery. I think medical devices really are singularly prone to ludicrous overpromising, but it's hard to know how much of my doubt should extend to other topics. I wish you well, and I hope the mundane business of living and getting care goes as well as possible. There's a lot of interesting change on the horizon, but people shouldn't let it overshadow improving lives however we can today.