7 ms·

As a partner of a person with a complete spinal cord injury, I appreciate these articles and the science being done by these researchers, it is truly a big and

As a partner of a person with a complete spinal cord injury, I appreciate these articles and the science being done by these researchers, it is truly a big and complex and worthwhile problem to solve. For most of us, I do want to suggest being careful when and how you mention research and articles like this to people in wheelchairs. Just be aware there are lots of different reasons why someone might be in a wheelchair and what can and can't be done for a given illness. It can be really taxing to get suggestions or shares of articles like this from well-meaning friends and family that don't actually understand the realities of living with an injury or medical issue that puts someone in a wheelchair. Obviously people should know work is being done. And obviously people might be excited to hear about breakthrough research. If you're inspired by articles like this, consider donating to the institutions funding the research. But, be aware that articles like this come out every year and for the vast majority of spinal cord injury patients it won't be available to them soon or ever. If you really want to support those in the accessibility needs community, support local building code changes and adaptive sports and outdoors programs. Making buildings, sports, and wilderness accessible will impact more people positively in the near term. The science is cool and amazing, but 100k people are limited by a few stairs to enjoy life and experiences with family.

steve76 5y ago
willmadden 5y ago
I completely agree. My mother has been a partial quadriplegic since 1992 after a car accident. The moment there are broad cures for injury related paralysis, it'll be front page news. The most impactful thing you can do to help people with paralysis is push for better wheelchair accessibility where you live. It's amazing how much of the world is not accessible to someone in a wheelchair.
verisimi 5y ago
- helsinkiandrew 5y ago
  Unless I've misread the articles about this story this is about a company using electrical stimulation to try to get people with spinal injuries to walk again. Not government using foetuses for some deeper purpose.
- mattkrause 5y ago
  You may be happy to learn that a lot of recent stem cell work does not actually use foetal tissue. Instead, there are methods for reverting adult cells from a blood sample back into stem cells (IPSCs, or induced pluripotent stem cells). This is exciting for a number of reasons: not only does it sidestep ethical concerns, but it introduces the possibility of making stem cells--and thus, other cells--that precisely match an individual patient! On the other hand, I'd encourage you to think about the motivations of medical researchers. Nobody is actually looking for any excuse to work with embryonic tissues (or animals, placebo-controlled trials, etc): it's slow, annoying and expensive and everyone I've ever met would vastly prefer to use yeast + computational models. People do actually want to help the sick and helpless, but the tools aren't there yet to do so with nothing but yeast and computational models.
  - verisimi 5y ago
    Ok - things change. It was an similar example of the point is that with articles like these we are being 'tenderised' into acceptance of the generally unacceptable. It is a type of manipulative engineering of consent. It is not a fair presentation of the issue. The 'sales job' suggests there is a (degenerative) agenda already in play with a desired end.
    - mattkrause 5y ago
      I'm honestly baffled as to what might be the generally unacceptable or "degenerative" agenda here. They stuck needles into consenting volunteers' spines and injected current. I don't think there's like...a big conspiracy to convince people to get epidurals or something.
londons_explore 5y ago
I guess the real question is, will a dollar spent on wheelchair ramps in buildings across the USA give a greater quality of life improvement to the average american than a dollar spent on medical research that tries to repair spinal nerves? Obviously "average american" is not intended to reflect the 'typical american', but instead be an average across all people, including those with mobility requirements.
- Tsiklon 5y ago
  The distinction is that the quality of life improvement can be done now, and can make peoples' lives better immediately. It's not just wheelchair users that can make use of accessible infrastructure, the elderly, and young children can more readily make use of it too. I don't discount the promise or effect of such research, but the utilitarian in me says that this can make a tangible improvement now, and to more people and not at an indeterminate point in the future.
  - londons_explore 5y ago
    There are plenty of such tradeoffs... For example, the government could start a helicopter service to help people cross a river today, or they could build a bridge across the river, which will help far more people, but won't be ready for 5 years. I assume governments have models to make decisions about utility now vs utility later, and the way that trades off with cost now vs cost later. I don't see why this decision shouldn't just use those models and spend the money on whatever the models say makes sense.
    - afarrell 5y ago
      > I assume governments have models to make decisions about utility now vs utility later, and the way that trades off with cost now vs cost later. I'm curious where this assumption comes from. It seems more likely that it would be made on intuition of what story will seem most defensible to voters or avoid the angry scrutiny of a legislator. If decisions were made with the high level of rationality you point to, it seems unlikely that the US would have problems like this: - https://pittsburgh.cbslocal.com/2022/02/07/pittsburgh-warning-signs-fern-hollow-bridge-collapse/ https://pittsburgh.cbslocal.com/2022/02/07/pittsburgh-warnin... - https://www.marketwatch.com/story/it-is-a-challenge-the-irs-wants-more-staff-to-cut-its-backlog-but-25k-salaries-arent-going-to-draw-job-seekers-watchdog-says-11644362209 https://www.marketwatch.com/story/it-is-a-challenge-the-irs-... - https://www.irs.gov/newsroom/irs-announces-transition-away-from-use-of-third-party-verification-involving-facial-recognition https://www.irs.gov/newsroom/irs-announces-transition-away-f... ---------------- Looking at your username lets consider a question such as "Should we pay additional money to design London's new Elizabeth Line with step-free access at all stations?" for such a model to answer such questions, we would need a way to accurately count costs. If could do that, then the line would already be open.
tarboreus 5y ago
I'm blind with a retinal disease and it's a similar dynamic. Not all breakthroughs will help a given person. Additionally, most breakthroughs seem to be some version of vaporware, and it might be 10 or 15 years, or never, for most people in that category to benefit. I go through phases of catching up on research, but mostly try not to think about it.
- animal531 5y ago
  I used to read physorg and other publications and would get really excited by all the new discoveries. But then decades go by and you sadly never see most of them realize.
Archelaos 5y ago
Whenever I come across an article about walking robots for the military, I am asking myself: What about walking-chairs as a replacement for wheelchairs? Could that be a realistic solution to the access problematic? I am an absolute layperson regarding robotics. Can perhaps anybody with some background explain, what to expect here in the next few years?
- ska 5y ago
  It's not exactly my area but I have some related experience. I suspect the big problem with this is power use. A standard issue wheelchair is very efficient on reasonably smooth and flat surfaces. Beyond the obvious problems with e.g. stairs, you can get around ok using just arm muscle power in lots of places. This efficiency helps also if you can't use your arms or the slopes are more challenging. Reasonably sized and weighted batteries can extend your scope a huge amount in very practical ways. As soon as you get away from wheeled locomotion though, the power needs become much more problematic. Not to mention the system complexity is orders of magnitude higher than a basic chair, with all that entails. So short story, I wouldn't expect any significant impact in the next few years. It's possible that for some very specific use cases you'll see a bit more robotics in assistive technology. It's also possible that we'll learn some good tricks from robots about negotiating particular obstacles (e.g. curbs) which can be retrofitted to "dumb" conveyances and improve things...
- paledot 5y ago
  No. My wife is paraplegic and we did in fact test a rudimentary exoskeleton at one point. The reason they don't work is because the mobility she misses the most is the ability to transport a cup of coffee from the coffee maker to her desk, or the ability to go for a jog. It's the little things that have the biggest impact, and no one is going to don an exoskeleton to wear around the house. Furthermore, the drive to overengineer mobility solutions crashes headlong into the world of manual wheelchairs. Manual wheelchairs are like road bikes: the best ones are the smallest, lightest-weight ones (often made from the same parts and materials). They have as few parts as possible, can turn on a dime, and can be lifted one-handed into the passenger seat of a car. A walking device of some sort might be a better equivalent to an electric wheelchair for someone with quadriplegia, hemiplegia, muscle spasms, or generalized weakness, but here you have the problem that many electric wheelchair users are at high risk of pressure sores. There's a reason that electric wheelchairs have all sorts of fancy recliner features: sit in any chair for 16 hours a day without the ability to shift around and you're going to do some pretty serious damage to whatever your weight is resting on. An exoskeleton necessarily holds you in a more upright position, putting more weight on fewer body parts. The solution to the access problem is to build ramps and lifts.
kspacewalk2 5y ago
To your last point, it's worth pointing out that making your built environment more easily traversible and usable for people with accessibility needs will pretty much always make it more easily traversible and usable for everyone. It's hard to appreciate this until you visit a country where they haven't spent decades making sure their elevators and hallways are wide enough, there are no unnecessary stupid steps, the sidewalks don't have curbs at crossing points, etc. etc. This is just general societal progress, it makes all of our lives easier and we're so used to it we don't even notice it anymore.
- oalders 5y ago
  I only truly appreciated this once I had was a pedestrian in a big city with a baby stroller. If a wheelchair can get somewhere, generally the stroller can do it as well. (At least a single wide stroller). Making places more accessible can have a positive impact on large parts of the population.
  - tomrod 5y ago
    I've learned to take this approach with software as well. It just makes sense. While he's not universally accepted, Nassim Taleb makes compelling behavioral arguments for why this is better overall (in the context things like kosher salt and such) https://medium.com/incerto/the-most-intolerant-wins-the-dictatorship-of-the-small-minority-3f1f83ce4e15 https://medium.com/incerto/the-most-intolerant-wins-the-dict...
- paledot 5y ago
  Canada is unexpectedly one of those countries. Accessibility here is a nightmare, especially in big cities. As another partner of a person with limited mobility, I always notice and appreciate the difference that 40 years of ADA has brought to construction in the US. (I'd take universal health care over improved building codes any day, but both would be nice.)
  - kspacewalk2 5y ago
    Indeed, Canada is a laggard in this area. I work on a university campus where they've gone beyond the bare minimum that's legislated, and it's quite a stark difference from the rest of the city. Another important part of that is sidewalk snow removal. Only within the last 5 years has the city slowly started doing this somewhat right on some streets, whereas campus sidewalks are always plowed and salted.

steve76 5y ago

willmadden 5y ago

I completely agree. My mother has been a partial quadriplegic since 1992 after a car accident. The moment there are broad cures for injury related paralysis, it'll be front page news. The most impactful thing you can do to help people with paralysis is push for better wheelchair accessibility where you live. It's amazing how much of the world is not accessible to someone in a wheelchair.

verisimi 5y ago

helsinkiandrew 5y ago
Unless I've misread the articles about this story this is about a company using electrical stimulation to try to get people with spinal injuries to walk again. Not government using foetuses for some deeper purpose.
mattkrause 5y ago
You may be happy to learn that a lot of recent stem cell work does not actually use foetal tissue. Instead, there are methods for reverting adult cells from a blood sample back into stem cells (IPSCs, or induced pluripotent stem cells). This is exciting for a number of reasons: not only does it sidestep ethical concerns, but it introduces the possibility of making stem cells--and thus, other cells--that precisely match an individual patient! On the other hand, I'd encourage you to think about the motivations of medical researchers. Nobody is actually looking for any excuse to work with embryonic tissues (or animals, placebo-controlled trials, etc): it's slow, annoying and expensive and everyone I've ever met would vastly prefer to use yeast + computational models. People do actually want to help the sick and helpless, but the tools aren't there yet to do so with nothing but yeast and computational models.
- verisimi 5y ago
  Ok - things change. It was an similar example of the point is that with articles like these we are being 'tenderised' into acceptance of the generally unacceptable. It is a type of manipulative engineering of consent. It is not a fair presentation of the issue. The 'sales job' suggests there is a (degenerative) agenda already in play with a desired end.
  - mattkrause 5y ago
    I'm honestly baffled as to what might be the generally unacceptable or "degenerative" agenda here. They stuck needles into consenting volunteers' spines and injected current. I don't think there's like...a big conspiracy to convince people to get epidurals or something.

londons_explore 5y ago

I guess the real question is, will a dollar spent on wheelchair ramps in buildings across the USA give a greater quality of life improvement to the average american than a dollar spent on medical research that tries to repair spinal nerves? Obviously "average american" is not intended to reflect the 'typical american', but instead be an average across all people, including those with mobility requirements.

Tsiklon 5y ago
The distinction is that the quality of life improvement can be done now, and can make peoples' lives better immediately. It's not just wheelchair users that can make use of accessible infrastructure, the elderly, and young children can more readily make use of it too. I don't discount the promise or effect of such research, but the utilitarian in me says that this can make a tangible improvement now, and to more people and not at an indeterminate point in the future.
- londons_explore 5y ago
  There are plenty of such tradeoffs... For example, the government could start a helicopter service to help people cross a river today, or they could build a bridge across the river, which will help far more people, but won't be ready for 5 years. I assume governments have models to make decisions about utility now vs utility later, and the way that trades off with cost now vs cost later. I don't see why this decision shouldn't just use those models and spend the money on whatever the models say makes sense.
  - afarrell 5y ago
    > I assume governments have models to make decisions about utility now vs utility later, and the way that trades off with cost now vs cost later. I'm curious where this assumption comes from. It seems more likely that it would be made on intuition of what story will seem most defensible to voters or avoid the angry scrutiny of a legislator. If decisions were made with the high level of rationality you point to, it seems unlikely that the US would have problems like this: - https://pittsburgh.cbslocal.com/2022/02/07/pittsburgh-warning-signs-fern-hollow-bridge-collapse/ https://pittsburgh.cbslocal.com/2022/02/07/pittsburgh-warnin... - https://www.marketwatch.com/story/it-is-a-challenge-the-irs-wants-more-staff-to-cut-its-backlog-but-25k-salaries-arent-going-to-draw-job-seekers-watchdog-says-11644362209 https://www.marketwatch.com/story/it-is-a-challenge-the-irs-... - https://www.irs.gov/newsroom/irs-announces-transition-away-from-use-of-third-party-verification-involving-facial-recognition https://www.irs.gov/newsroom/irs-announces-transition-away-f... ---------------- Looking at your username lets consider a question such as "Should we pay additional money to design London's new Elizabeth Line with step-free access at all stations?" for such a model to answer such questions, we would need a way to accurately count costs. If could do that, then the line would already be open.

tarboreus 5y ago

I'm blind with a retinal disease and it's a similar dynamic. Not all breakthroughs will help a given person. Additionally, most breakthroughs seem to be some version of vaporware, and it might be 10 or 15 years, or never, for most people in that category to benefit. I go through phases of catching up on research, but mostly try not to think about it.

animal531 5y ago
I used to read physorg and other publications and would get really excited by all the new discoveries. But then decades go by and you sadly never see most of them realize.

Archelaos 5y ago

Whenever I come across an article about walking robots for the military, I am asking myself: What about walking-chairs as a replacement for wheelchairs? Could that be a realistic solution to the access problematic? I am an absolute layperson regarding robotics. Can perhaps anybody with some background explain, what to expect here in the next few years?

ska 5y ago
It's not exactly my area but I have some related experience. I suspect the big problem with this is power use. A standard issue wheelchair is very efficient on reasonably smooth and flat surfaces. Beyond the obvious problems with e.g. stairs, you can get around ok using just arm muscle power in lots of places. This efficiency helps also if you can't use your arms or the slopes are more challenging. Reasonably sized and weighted batteries can extend your scope a huge amount in very practical ways. As soon as you get away from wheeled locomotion though, the power needs become much more problematic. Not to mention the system complexity is orders of magnitude higher than a basic chair, with all that entails. So short story, I wouldn't expect any significant impact in the next few years. It's possible that for some very specific use cases you'll see a bit more robotics in assistive technology. It's also possible that we'll learn some good tricks from robots about negotiating particular obstacles (e.g. curbs) which can be retrofitted to "dumb" conveyances and improve things...
paledot 5y ago
No. My wife is paraplegic and we did in fact test a rudimentary exoskeleton at one point. The reason they don't work is because the mobility she misses the most is the ability to transport a cup of coffee from the coffee maker to her desk, or the ability to go for a jog. It's the little things that have the biggest impact, and no one is going to don an exoskeleton to wear around the house. Furthermore, the drive to overengineer mobility solutions crashes headlong into the world of manual wheelchairs. Manual wheelchairs are like road bikes: the best ones are the smallest, lightest-weight ones (often made from the same parts and materials). They have as few parts as possible, can turn on a dime, and can be lifted one-handed into the passenger seat of a car. A walking device of some sort might be a better equivalent to an electric wheelchair for someone with quadriplegia, hemiplegia, muscle spasms, or generalized weakness, but here you have the problem that many electric wheelchair users are at high risk of pressure sores. There's a reason that electric wheelchairs have all sorts of fancy recliner features: sit in any chair for 16 hours a day without the ability to shift around and you're going to do some pretty serious damage to whatever your weight is resting on. An exoskeleton necessarily holds you in a more upright position, putting more weight on fewer body parts. The solution to the access problem is to build ramps and lifts.

kspacewalk2 5y ago

To your last point, it's worth pointing out that making your built environment more easily traversible and usable for people with accessibility needs will pretty much always make it more easily traversible and usable for everyone. It's hard to appreciate this until you visit a country where they haven't spent decades making sure their elevators and hallways are wide enough, there are no unnecessary stupid steps, the sidewalks don't have curbs at crossing points, etc. etc. This is just general societal progress, it makes all of our lives easier and we're so used to it we don't even notice it anymore.

oalders 5y ago
I only truly appreciated this once I had was a pedestrian in a big city with a baby stroller. If a wheelchair can get somewhere, generally the stroller can do it as well. (At least a single wide stroller). Making places more accessible can have a positive impact on large parts of the population.
- tomrod 5y ago
  I've learned to take this approach with software as well. It just makes sense. While he's not universally accepted, Nassim Taleb makes compelling behavioral arguments for why this is better overall (in the context things like kosher salt and such) https://medium.com/incerto/the-most-intolerant-wins-the-dictatorship-of-the-small-minority-3f1f83ce4e15 https://medium.com/incerto/the-most-intolerant-wins-the-dict...
paledot 5y ago
Canada is unexpectedly one of those countries. Accessibility here is a nightmare, especially in big cities. As another partner of a person with limited mobility, I always notice and appreciate the difference that 40 years of ADA has brought to construction in the US. (I'd take universal health care over improved building codes any day, but both would be nice.)
- kspacewalk2 5y ago
  Indeed, Canada is a laggard in this area. I work on a university campus where they've gone beyond the bare minimum that's legislated, and it's quite a stark difference from the rest of the city. Another important part of that is sidewalk snow removal. Only within the last 5 years has the city slowly started doing this somewhat right on some streets, whereas campus sidewalks are always plowed and salted.