4 ms·

Frankly, as somebody with 2 rare autoimmune nerve diseases (affecting my peripheral nervous system), who is disabled, I am not excited about this news. Do they

Frankly, as somebody with 2 rare autoimmune nerve diseases (affecting my peripheral nervous system), who is disabled, I am not excited about this news. Do they have any sort of residual neuropathic pain, either from their injury or the procedure? What sort of functional limitations do they have? Did their autonomic dysfunction improve (extremely unlikely to improve with a nerve transfer procedure, as described above)? Etc., etc. I am sure this is more heartwarming than anything else. I am perfectly OK with being disabled, and I just wish society would accept us for who we are (as disabled people). I am tired of people in tech posting "inspirational" stories in general about "overcoming disabilities" or "making our lives better" (because "we suffer so much"), without any sort of interview or input from the disabled person. We are always portrayed as objects, and are never at the center of the story, and if we are, we are still the object because it is about making a gerry-rigged mobility device with a high school robotics team with Home Depot materials because our insurance refused to pay for something medically necessary. The most famous example of a "heartwarming story" about the disabled is wheelchairs that climb stairs (that probably are not safe to use in the rain or on carpeted stairs), that cost tens of thousands of dollars and have huge design constraints (which are almost never mentioned). Plus, if you knew how US insurance reimbursed wheelchairs (which should be classified as a prosthetic device, versus an orthotic device), you would be absolutely appalled. I would not hold my breath on insurance reimbursement for a procedure like nerve transfer anytime soon, either. To me, this is another variant of techno-ableism: https://techanddisability.com/2017/11/11/technoableism-cyborg-bodies-and-mars/ https://techanddisability.com/2017/11/11/technoableism-cybor...

nsajko 7y ago
> They can now perform everyday tasks independently such as feeding themselves, brushing teeth and hair, putting on make-up, writing, handling money and credit cards, and using tools and electronic devices. Would that not be worth it?
- disabled 7y ago
  The way this news is portrayed, as "heartwarming", does nobody favors. The autonomic dysreflexia, which people with tetraplegia are almost guaranteed to have, is literally one of the worst feelings in the world. I promise you, and I have experienced it firsthand. This cannot be resolved by the nerve transfer. It's not about worth or function-It's about perspective and how things have changed for them. That is what really matters. Nobody ever interviews the disabled people who participate in these sorts of things, and limitations are almost never honestly described in these circumstances. If you do not recognize the hypocrisy, then I do not know what to say. By just portraying it as heartwarming news, it does no favors for people who are actually going through things like this. By the way, it is not at all heartwarming for us. We also cannot make informed decisions off of articles like this, and it is harmful because the bar is either set really high for us--or really low. Our lives are tied more to "what we are worth" far more than the abled-bodied. I could go into it more but I don't want to write a really long winded post.
Bartweiss 7y ago
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.

nsajko 7y ago

> They can now perform everyday tasks independently such as feeding themselves, brushing teeth and hair, putting on make-up, writing, handling money and credit cards, and using tools and electronic devices. Would that not be worth it?

disabled 7y ago
The way this news is portrayed, as "heartwarming", does nobody favors. The autonomic dysreflexia, which people with tetraplegia are almost guaranteed to have, is literally one of the worst feelings in the world. I promise you, and I have experienced it firsthand. This cannot be resolved by the nerve transfer. It's not about worth or function-It's about perspective and how things have changed for them. That is what really matters. Nobody ever interviews the disabled people who participate in these sorts of things, and limitations are almost never honestly described in these circumstances. If you do not recognize the hypocrisy, then I do not know what to say. By just portraying it as heartwarming news, it does no favors for people who are actually going through things like this. By the way, it is not at all heartwarming for us. We also cannot make informed decisions off of articles like this, and it is harmful because the bar is either set really high for us--or really low. Our lives are tied more to "what we are worth" far more than the abled-bodied. I could go into it more but I don't want to write a really long winded post.

Bartweiss 7y ago

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.