Wheelchairs are Life, and Losing Them Can be Death
November 5, 2021 3:04 PM Subscribe
Engracia Figueroa has died after a horrible experience with United Airlines. CW: death, bodily trauma.
Some background on Engracia Figueroa. Information about damage to thousands of wheelchairs. Ableism from the recent climate conference.
Some background on Engracia Figueroa. Information about damage to thousands of wheelchairs. Ableism from the recent climate conference.
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I hate this.
Although none of the major carriers are free from problems, United stands out in my memory as producing the worst stories about cargo destruction (including animals).
posted by Countess Elena at 3:12 PM on November 5, 2021 [5 favorites]
I hate this.
Although none of the major carriers are free from problems, United stands out in my memory as producing the worst stories about cargo destruction (including animals).
posted by Countess Elena at 3:12 PM on November 5, 2021 [5 favorites]
When I heard, long ago, about United destroying guitars, I didn't realize it could get worse, but of course it could.
posted by Nancy Lebovitz at 3:14 PM on November 5, 2021 [7 favorites]
posted by Nancy Lebovitz at 3:14 PM on November 5, 2021 [7 favorites]
,
posted by cybercoitus interruptus at 3:53 PM on November 5, 2021
posted by cybercoitus interruptus at 3:53 PM on November 5, 2021
This is absolutely enraging. The article mentions a lawyer-- I hope the case goes all the way to trial and that United is forced to change their system. What a horrible, tragic loss for a woman who seems to have been a critical part of several vibrant communities.
There is a long history of difficulty flying with wheelchairs, which carriers are supposed to do for free as part of the ADA, but many of them keep trying to walk back those protections.
On the other hand, here is my story, which shows just how variable this whole wheelchair travel issue can be:
So my wife also has a $30,000 custom wheelchair, and the last time she flew with it was February of 2019. The carrier was Alaska airlines, and the flight was from Seattle to Orlando. We are experienced disability advocates, and always do our research, including speaking to the specific airline about their wheelchair procedures. Alaska airlines told us we would need to provide instructions on how to remove the batteries from the 375-pound wheelchair before it could be loaded into the cargo compartment. Fair enough. I spent a few hours creating a laminated instruction card with pictures, and clearly labelled every single item on the chair in numerical order for the 11-step process needed to remove the two car batteries that power the unit. So, good to go, right?
When she got back I asked how the instructional aids I created were used and if they were helpful. "Nope, not at all," she answered. "They just slipped the brake off, folded the seat, and rolled the whole unit into the cargo compartment. Batteries were not removed on either flight-- coming or going."
And the chair was absolutely undamaged. In eight years of dealing with three different chairs, I've got eagle eyes for every single scratch and dent. There were none. So odd. She's damaged the wheelchair worse on trips a block away walking our dog.
Weird, right? And chilling, knowing that there was some kind of cosmic lottery going on and the equally possible result that Engracia Figueroa got when she flew was to have your wheelchair damaged and your case delayed and ignored until after you died of injuries that the airline is completely liable for. What a horrible world we live in where this kind of thing can happen.
posted by seasparrow at 3:57 PM on November 5, 2021 [32 favorites]
There is a long history of difficulty flying with wheelchairs, which carriers are supposed to do for free as part of the ADA, but many of them keep trying to walk back those protections.
On the other hand, here is my story, which shows just how variable this whole wheelchair travel issue can be:
So my wife also has a $30,000 custom wheelchair, and the last time she flew with it was February of 2019. The carrier was Alaska airlines, and the flight was from Seattle to Orlando. We are experienced disability advocates, and always do our research, including speaking to the specific airline about their wheelchair procedures. Alaska airlines told us we would need to provide instructions on how to remove the batteries from the 375-pound wheelchair before it could be loaded into the cargo compartment. Fair enough. I spent a few hours creating a laminated instruction card with pictures, and clearly labelled every single item on the chair in numerical order for the 11-step process needed to remove the two car batteries that power the unit. So, good to go, right?
When she got back I asked how the instructional aids I created were used and if they were helpful. "Nope, not at all," she answered. "They just slipped the brake off, folded the seat, and rolled the whole unit into the cargo compartment. Batteries were not removed on either flight-- coming or going."
And the chair was absolutely undamaged. In eight years of dealing with three different chairs, I've got eagle eyes for every single scratch and dent. There were none. So odd. She's damaged the wheelchair worse on trips a block away walking our dog.
Weird, right? And chilling, knowing that there was some kind of cosmic lottery going on and the equally possible result that Engracia Figueroa got when she flew was to have your wheelchair damaged and your case delayed and ignored until after you died of injuries that the airline is completely liable for. What a horrible world we live in where this kind of thing can happen.
posted by seasparrow at 3:57 PM on November 5, 2021 [32 favorites]
"On average, airlines damage or destroy 29 wheelchairs per day."
But, no, it's the corporations that must be protected from needless regulations. This fucking world.
posted by rikschell at 4:04 PM on November 5, 2021 [60 favorites]
But, no, it's the corporations that must be protected from needless regulations. This fucking world.
posted by rikschell at 4:04 PM on November 5, 2021 [60 favorites]
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So wholly and roundly fucked up. United needs to pay big, and airlines need to be made to fix this immediately.
posted by kaelynski at 4:27 PM on November 5, 2021
So wholly and roundly fucked up. United needs to pay big, and airlines need to be made to fix this immediately.
posted by kaelynski at 4:27 PM on November 5, 2021
I'm guessing airlines aren't concerned with car batteries like they are with lithium batteries, which are a fire risk.
And United stinks.
posted by Bee'sWing at 4:28 PM on November 5, 2021 [2 favorites]
And United stinks.
posted by Bee'sWing at 4:28 PM on November 5, 2021 [2 favorites]
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posted by JoeXIII007 at 4:29 PM on November 5, 2021
posted by JoeXIII007 at 4:29 PM on November 5, 2021
I had recently read the statistics on wheelchair damage, and knew, as we all did, that it would eventually lead to even greater tragedy.
posted by The Underpants Monster at 5:04 PM on November 5, 2021
posted by The Underpants Monster at 5:04 PM on November 5, 2021
I get that United stinks but there also seems to be a huge systemic failure here that the article glosses over. Why wasn't she provided with a properly fitted loaner chair, and why isn't part of being discharged from hospital for edema and and a pressure sore making sure that the situation which caused the problems in the first place is resolved ?
posted by colophon at 5:06 PM on November 5, 2021 [7 favorites]
posted by colophon at 5:06 PM on November 5, 2021 [7 favorites]
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Without taking anything away from the commiseration ITT, I do feel the need to ask. Assuming the airlines aren't going to change much anytime soon, what can a wheelchair-dependent person do to minimize the risk? Is there airline/wheelchair insurance? Has anyone cobbled together a 'defensive wheelchair airline travel' how-to webpage (The youtube videos I've seen so far are a bit flippant IMO)? Are there 'good' airlines for this?
posted by zaixfeep at 5:18 PM on November 5, 2021 [1 favorite]
Without taking anything away from the commiseration ITT, I do feel the need to ask. Assuming the airlines aren't going to change much anytime soon, what can a wheelchair-dependent person do to minimize the risk? Is there airline/wheelchair insurance? Has anyone cobbled together a 'defensive wheelchair airline travel' how-to webpage (The youtube videos I've seen so far are a bit flippant IMO)? Are there 'good' airlines for this?
posted by zaixfeep at 5:18 PM on November 5, 2021 [1 favorite]
Why wasn't she
My guess? To borrow from Fight Club, if a + b + c < the cost of correcting the problem en masse, they don't do it.
posted by zaixfeep at 5:21 PM on November 5, 2021 [1 favorite]
My guess? To borrow from Fight Club, if a + b + c < the cost of correcting the problem en masse, they don't do it.
posted by zaixfeep at 5:21 PM on November 5, 2021 [1 favorite]
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posted by hydropsyche at 5:44 PM on November 5, 2021
posted by hydropsyche at 5:44 PM on November 5, 2021
In general airline employees seem for whatever reason to treat getting around to helping disabled passengers as always the very last thing on their long list of priorities. It's very weird to me. It shows how inherently anti-human so many of our institutions are because maybe what we actually need is like a whole new very large & very well funded team at the airport who specialize in disabled passengers and have nothing else to do & plenty of bandwidth to do it. It would probably cost them less to invest in up front that it costs them in causing, fighting & settling these lawsuits.
posted by bleep at 5:52 PM on November 5, 2021 [14 favorites]
posted by bleep at 5:52 PM on November 5, 2021 [14 favorites]
In-between the pressure sore forming and her needing surgery for the infected bone, there were hundreds of points someone along the chain could have taken their job more seriously and kept her from dying. United are scum, but so is our health care system.
posted by tigrrrlily at 6:02 PM on November 5, 2021 [31 favorites]
posted by tigrrrlily at 6:02 PM on November 5, 2021 [31 favorites]
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The other thing I don't see people talking about as much as I'd like, when wheelchair destruction comes up, is that wheelchairs are hellishly expensive. Like other accessibility tech, it's often only partially paid for and requires a lot of investment cost from the disabled person. Sometimes insurance straight up will not cover wheelchairs, as with amputees who should have both a chair and a prosthetic for times when they need to give their body a break from the pressure of the prosthetic.
My understanding is that wheelchairs intended for sustained use (more than a few hours at a time every few days or so) often need to be fitted fairly carefully for ergonomics of motion and pressure to avoid injuries like Figuroa's. The more routinely you use your chair, the more likely it is that your chair will be difficult to replace and something you have sunk substantial resources into--resources you may not be able to obtain on your own.
And the rate at which airlines break the chairs is just astronomical. It's all well and good to say "maybe just avoid airlines altogether then," but if travel was an essential part of your job pre-COVID what exactly are you supposed to do when your boss signs you up for a conference? Not go and miss out on networking and professional development? Hire a bus and commit to taking days longer than everyone else? Drive... in the car that may also have been expensively retrofitted for your chair, which will be impossible to quickly replace if someone hits you on the road, without any support network for people who are prepared to handle it and help you get around if someone does hit you?
posted by sciatrix at 6:08 PM on November 5, 2021 [24 favorites]
The other thing I don't see people talking about as much as I'd like, when wheelchair destruction comes up, is that wheelchairs are hellishly expensive. Like other accessibility tech, it's often only partially paid for and requires a lot of investment cost from the disabled person. Sometimes insurance straight up will not cover wheelchairs, as with amputees who should have both a chair and a prosthetic for times when they need to give their body a break from the pressure of the prosthetic.
My understanding is that wheelchairs intended for sustained use (more than a few hours at a time every few days or so) often need to be fitted fairly carefully for ergonomics of motion and pressure to avoid injuries like Figuroa's. The more routinely you use your chair, the more likely it is that your chair will be difficult to replace and something you have sunk substantial resources into--resources you may not be able to obtain on your own.
And the rate at which airlines break the chairs is just astronomical. It's all well and good to say "maybe just avoid airlines altogether then," but if travel was an essential part of your job pre-COVID what exactly are you supposed to do when your boss signs you up for a conference? Not go and miss out on networking and professional development? Hire a bus and commit to taking days longer than everyone else? Drive... in the car that may also have been expensively retrofitted for your chair, which will be impossible to quickly replace if someone hits you on the road, without any support network for people who are prepared to handle it and help you get around if someone does hit you?
posted by sciatrix at 6:08 PM on November 5, 2021 [24 favorites]
Why wasn't she provided with a properly fitted loaner chair
The wheelchairs that airports provider for passengers are meant for transport only. They are designed to get a person from point a to point b with another person pushing, rather than the wheelchair user self-propelling. Airlines are probably buying these cheaply in quantity to accommodate the largest possible number of potential users, so the range of sizes is small and they won’t have much by way of seat padding. A day to day wheelchair for a user like Engracia, by contrast, is custom fitted to a person’s height and weight, and can have with a range of pressure-relieving cushions with different degrees of padding. (Your cushion needs are going to be different depending on whether you’re a full-time wheelchair user vs someone who can stand or walk for short distances, what level of sensation of lack thereof you have in your legs and butt, your weight—lots of possible considerations).
It’s also ridiculously easy to get a sacral pressure ulcer from only a short period of immobility or sitting on the wrong kind of seat if you have the risk factors. If Ms. Figueroa’s disability left with with limited sensation in her lower body, or no/limited ability to shift her weight under her own power, or no/limited ability to sit up straight, then an overlong period in any transport chair is an instant recipe for an early-stage ulcer. (Take a minute now to feel your tailbone and observe how thin the skin is and how close the bone is to the surface). And once you’ve got a sacral ulcer, even a small one, it’s a high risk for infection because it’s hard to keep weight off the area for long stretches, and the wound can easily get contaminated with feces.
why isn't part of being discharged from hospital for edema and and a pressure sore making sure that the situation which caused the problems in the first place is resolved?
Oh sweet summer child…
1) The process of getting a custom wheelchair through US insurance is a labyrinthine hellscape, and once you get one you’d better hold onto it and maintain it for years because getting a replacement anytime before the able-bodied insurance bean counters deem it appropriate is even worse. Even once you’ve passed through the bureaucratic hurdles the actual building of the chair takes time as well, almost certainly more time than the hospital will want to give you.
2) In case you haven’t noticed, US hospitals are kinda slammed right now. As a result, they are looking to get people to the bare minimum degree of stabilized and then clear the bed out for the next taker. Discharge planning still happens in there—can verify, it being my job and all—but it can be pretty perfunctory. I have pushed at times for my people to stay one extra night while we wait for, say, a hospital bed to get delivered to their home. I can usually make it happen if I whine hard enough and swear on my most valuable possession that I can get them home tomorrow, but the hospitals do not like it at all. Waiting for an entire complex power wheelchair to get finished when a person is medically stable enough for discharge by the hospital’s estimation is enough to give a high powered CEO a temper tantrum over their lost income. I personally am all about giving hospital CEOs as many temper tantrums as possible, but I am also a lowly cog without a lot of pull. All of this was true before covid, but the pandemic has made the entire situation much, much worse.
Tl;dr for profit healthcare ruins everything again.
(Disclaimer: I am not a wheelchair user, but I have tried and failed to help people get wheelchairs through insurance, and I have taken care of a lot of people with sacral pressure ulcers).
posted by I am a Sock, I am an Island at 6:13 PM on November 5, 2021 [80 favorites]
The wheelchairs that airports provider for passengers are meant for transport only. They are designed to get a person from point a to point b with another person pushing, rather than the wheelchair user self-propelling. Airlines are probably buying these cheaply in quantity to accommodate the largest possible number of potential users, so the range of sizes is small and they won’t have much by way of seat padding. A day to day wheelchair for a user like Engracia, by contrast, is custom fitted to a person’s height and weight, and can have with a range of pressure-relieving cushions with different degrees of padding. (Your cushion needs are going to be different depending on whether you’re a full-time wheelchair user vs someone who can stand or walk for short distances, what level of sensation of lack thereof you have in your legs and butt, your weight—lots of possible considerations).
It’s also ridiculously easy to get a sacral pressure ulcer from only a short period of immobility or sitting on the wrong kind of seat if you have the risk factors. If Ms. Figueroa’s disability left with with limited sensation in her lower body, or no/limited ability to shift her weight under her own power, or no/limited ability to sit up straight, then an overlong period in any transport chair is an instant recipe for an early-stage ulcer. (Take a minute now to feel your tailbone and observe how thin the skin is and how close the bone is to the surface). And once you’ve got a sacral ulcer, even a small one, it’s a high risk for infection because it’s hard to keep weight off the area for long stretches, and the wound can easily get contaminated with feces.
why isn't part of being discharged from hospital for edema and and a pressure sore making sure that the situation which caused the problems in the first place is resolved?
Oh sweet summer child…
1) The process of getting a custom wheelchair through US insurance is a labyrinthine hellscape, and once you get one you’d better hold onto it and maintain it for years because getting a replacement anytime before the able-bodied insurance bean counters deem it appropriate is even worse. Even once you’ve passed through the bureaucratic hurdles the actual building of the chair takes time as well, almost certainly more time than the hospital will want to give you.
2) In case you haven’t noticed, US hospitals are kinda slammed right now. As a result, they are looking to get people to the bare minimum degree of stabilized and then clear the bed out for the next taker. Discharge planning still happens in there—can verify, it being my job and all—but it can be pretty perfunctory. I have pushed at times for my people to stay one extra night while we wait for, say, a hospital bed to get delivered to their home. I can usually make it happen if I whine hard enough and swear on my most valuable possession that I can get them home tomorrow, but the hospitals do not like it at all. Waiting for an entire complex power wheelchair to get finished when a person is medically stable enough for discharge by the hospital’s estimation is enough to give a high powered CEO a temper tantrum over their lost income. I personally am all about giving hospital CEOs as many temper tantrums as possible, but I am also a lowly cog without a lot of pull. All of this was true before covid, but the pandemic has made the entire situation much, much worse.
Tl;dr for profit healthcare ruins everything again.
(Disclaimer: I am not a wheelchair user, but I have tried and failed to help people get wheelchairs through insurance, and I have taken care of a lot of people with sacral pressure ulcers).
posted by I am a Sock, I am an Island at 6:13 PM on November 5, 2021 [80 favorites]
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posted by doctornemo at 6:37 PM on November 5, 2021
posted by doctornemo at 6:37 PM on November 5, 2021
why isn't part of being discharged from hospital for edema and and a pressure sore making sure that the situation which caused the problems in the first place is resolved?
My RN spouse adds from experience that they do have a nurse on their floor whose entire job is to attempt to do this task!
She runs into three basic kinds of snags:
1) Insurance doesn't want to pay for it and will make her fight for sometimes up to a couple of weeks, including multiple appeals, for any given piece of equipment.
2) Doctors think that the patient should just do different things (e.g., "but if the patient would just roll over frequently and put a little effort into it, they wouldn't need this!") and so don't want to write the prescription for the equipment. Because doctors often only see patients for five minutes at a time, it's often not automatically obvious to them that the patient can be trying their damnedest but still not actually capable of doing the thing without help--and that the patient may not have access to round the clock human caregivers outside the hospital. Granny still needs to turn over when her daughter is sleeping or working, you feel? Additionally, doctors are often not all that familiar with the available equipment that might help the patient. Nurses and physiotherapists usually spend more time with that kind of technology, but they aren't the people that the insurance companies rely on to determine whether the equipment can meaningfully change the health outcomes or life of the patient. And insurance companies, again, do not want to pay.
3) Durable medical equipment companies are really prone to shortages, especially in (surprise!) COVID. They often rent equipment rather than selling it, and they usually serve both individual patients and hospitals as clients--and hospitals get priority. Frequently there is a substantial wait for equipment that a patient needs to be safely sent home to become available, and--say it with me now--insurance does not want to pay for extra time in a hospital for someone theoretically capable of healing outside of it while you wait around for the correct equipment to become available.
posted by sciatrix at 6:40 PM on November 5, 2021 [30 favorites]
My RN spouse adds from experience that they do have a nurse on their floor whose entire job is to attempt to do this task!
She runs into three basic kinds of snags:
1) Insurance doesn't want to pay for it and will make her fight for sometimes up to a couple of weeks, including multiple appeals, for any given piece of equipment.
2) Doctors think that the patient should just do different things (e.g., "but if the patient would just roll over frequently and put a little effort into it, they wouldn't need this!") and so don't want to write the prescription for the equipment. Because doctors often only see patients for five minutes at a time, it's often not automatically obvious to them that the patient can be trying their damnedest but still not actually capable of doing the thing without help--and that the patient may not have access to round the clock human caregivers outside the hospital. Granny still needs to turn over when her daughter is sleeping or working, you feel? Additionally, doctors are often not all that familiar with the available equipment that might help the patient. Nurses and physiotherapists usually spend more time with that kind of technology, but they aren't the people that the insurance companies rely on to determine whether the equipment can meaningfully change the health outcomes or life of the patient. And insurance companies, again, do not want to pay.
3) Durable medical equipment companies are really prone to shortages, especially in (surprise!) COVID. They often rent equipment rather than selling it, and they usually serve both individual patients and hospitals as clients--and hospitals get priority. Frequently there is a substantial wait for equipment that a patient needs to be safely sent home to become available, and--say it with me now--insurance does not want to pay for extra time in a hospital for someone theoretically capable of healing outside of it while you wait around for the correct equipment to become available.
posted by sciatrix at 6:40 PM on November 5, 2021 [30 favorites]
(Don't think that y'all in countries with socialized health care are off the hook for this one, either. For profit medical care exacerbates all this, but I have heard enough fucked up horror stories coming from friends in the UK and Canada to be confident in pointing out that this is an international problem. Socialized medicine is still very bad at funding assistive tech appropriately, even though it's better than for profit healthcare.)
posted by sciatrix at 6:47 PM on November 5, 2021 [25 favorites]
posted by sciatrix at 6:47 PM on November 5, 2021 [25 favorites]
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posted by ourobouros at 6:57 PM on November 5, 2021
posted by ourobouros at 6:57 PM on November 5, 2021
As a disability advocate, Figueroa would've had the ability to document the causal chain and the network to spread the word. This may be the first such death to be so clearly attributed to airlines mishandling of wheelchairs, but it's almost certainly not the first death.
Seeing the carrier, I'm reminded of United Breaks Guitars.
Airlines transport a lot of golf clubs & ski equipment, and I never hear about them being damaged...
posted by cheshyre at 7:32 PM on November 5, 2021 [3 favorites]
Seeing the carrier, I'm reminded of United Breaks Guitars.
Airlines transport a lot of golf clubs & ski equipment, and I never hear about them being damaged...
posted by cheshyre at 7:32 PM on November 5, 2021 [3 favorites]
Airlines transport a lot of golf clubs
The first time I flew into Las Vegas, I noticed a lot of longish, wheeled, hard-shell cases coming out on the luggage carousel, that looked exactly like the cases we used at work for transporting our Skyline trade show displays. Those suckers were so tough they could have passed the Samsonite Gorilla test. As it turned out, the resort where I was staying had a golf course, so I learned that those were travel cases for golf clubs. Now, if they only made those in wheelchair size...
posted by The Underpants Monster at 8:30 PM on November 5, 2021 [3 favorites]
The first time I flew into Las Vegas, I noticed a lot of longish, wheeled, hard-shell cases coming out on the luggage carousel, that looked exactly like the cases we used at work for transporting our Skyline trade show displays. Those suckers were so tough they could have passed the Samsonite Gorilla test. As it turned out, the resort where I was staying had a golf course, so I learned that those were travel cases for golf clubs. Now, if they only made those in wheelchair size...
posted by The Underpants Monster at 8:30 PM on November 5, 2021 [3 favorites]
(And I’ve known musicians who went as far as buying a second seat for their instruments. Also not really feasible with a wheelchair.)
posted by The Underpants Monster at 8:33 PM on November 5, 2021
posted by The Underpants Monster at 8:33 PM on November 5, 2021
Wow, I'm Canadian and I knew we have problems with wait times for assistive devices, but I'm shocked that hospitals are allowed to discharge people without making sure they have the equipment and support they need to heal safely.
posted by colophon at 8:41 PM on November 5, 2021
posted by colophon at 8:41 PM on November 5, 2021
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and * for the airlines. All of them. All of them.
posted by Soliloquy at 10:02 PM on November 5, 2021
and * for the airlines. All of them. All of them.
posted by Soliloquy at 10:02 PM on November 5, 2021
If anyone is feeling enraged right now, and wants channel that anger productively, I suggest you go support:
All Wheels Up
Flying Disabled (UK)
posted by Soliloquy at 10:22 PM on November 5, 2021 [11 favorites]
All Wheels Up
Flying Disabled (UK)
posted by Soliloquy at 10:22 PM on November 5, 2021 [11 favorites]
Wow, I'm Canadian and I knew we have problems with wait times for assistive devices, but I'm shocked that hospitals are allowed to discharge people without making sure they have the equipment and support they need to heal safely.
I was once in a car accident where I broke 10 bones and had been in freezing water for at least half an hour crawling from the wreckage. I didn’t have anyone to help me at home, was having chest pains, and had to go up ice-covered steps to get in and out of the house. I couldn’t grip crutches or a walker with my hands. The ER gave me two ibuprofen and a few ace bandages, and sent me home with instructions to start calling orthopedists in the morning. I asked if I shouldn’t be observed overnight because of the chest pains and the difficulty breathing, but they said the doctor on duty didn’t have time to talk to me or look over my chart again.
Of the two orthopedists in town who took my insurance, only one had appointments sooner than two weeks out, and they initially refused to see me because I owed an old $50 copay I thought I had paid a year earlier. The office manager literally said, “We’re not obligated to treat people like you.” After I paid, they agreed to squeeze me in two days after the accident.
posted by The Underpants Monster at 10:22 PM on November 5, 2021 [37 favorites]
I was once in a car accident where I broke 10 bones and had been in freezing water for at least half an hour crawling from the wreckage. I didn’t have anyone to help me at home, was having chest pains, and had to go up ice-covered steps to get in and out of the house. I couldn’t grip crutches or a walker with my hands. The ER gave me two ibuprofen and a few ace bandages, and sent me home with instructions to start calling orthopedists in the morning. I asked if I shouldn’t be observed overnight because of the chest pains and the difficulty breathing, but they said the doctor on duty didn’t have time to talk to me or look over my chart again.
Of the two orthopedists in town who took my insurance, only one had appointments sooner than two weeks out, and they initially refused to see me because I owed an old $50 copay I thought I had paid a year earlier. The office manager literally said, “We’re not obligated to treat people like you.” After I paid, they agreed to squeeze me in two days after the accident.
posted by The Underpants Monster at 10:22 PM on November 5, 2021 [37 favorites]
Those needing wheelchairs have to fight insurance. It can easily take over a year to get approved for and then fight for the appropriate type. Even once you get approved, you generally go somewhere that specializes in them to try different models and find the right measurements and specific parts that are going to be best for your life. These are things you use all day every day and there are so many different reasons to need one and so many different types of users. Once you get an order placed, you may have to fight with insurance again to justify your choices. After they put the actual order in, it can take over 6 months to get your chair. When it arrives, it has to be checked before being accepted for delivery. It may have to be rejected for being wrong or damaged. Once you have a chair that works for you, you take care of it. Your insurance company isn't going to want to talk about replacing it for at least 5 years. I can only imagine the process for a powered chair. You will always hate your first chair and have learned what you did wrong, but you're stuck with it or going to have to pay for your own to fix those issues.
If able, most wheelchair users want to be independent. A popular option are push handles that pop down to discourage people from just deciding to push you without asking. Remember, damage to your ability to walk is down there and hasn't traveled upwards and damaged your brain for many conditions. So, you have 7 or 8 measurements for the dimensions of the chair to match the length and width of pieces of your body and then special seating cushions that match your needs. These can be hybrid air and foam and cost well over $500.
The chairs you see at airports and hospitals have a specific name. They are durable, generic, and cheap. They are used in many cases that aren't for the permanently disabled or those with special seating needs. At an airport they are often used to reduce lawsuit risk or for those who usually walk, but are not able to deal with how massive airports are.
Wheelchair users live daily lives as their own advocates. Places like airports are full of employees who are ignorant to the law, don't know how to treat a person who uses a wheelchair, or are busy and just trying to get things done and don't care. Boarding a plane and if you need to use the restroom you are strapped into an aisle chair and pushed around. For a bathroom visit they put you in front of the door and the rest is up to you. There is law requiring some concessions for a disabled bathroom on a plane, but there is usually only one and it only applies to planes of a certain size. Even someone without the need for a wheelchair can sympathize with how much airplane bathrooms suck. Never mind being strapped into a chair like Hannibal Lecter. If you arrive at your destination and your wheelchair is damaged what can you really do? Sure, insurance, a rental or loaner chair that isn't custom to your needs... You will have to order replacement parts that can take weeks to arrive.
If you have reduced feeling below the waist, you don't get signals that say you're uncomfortable how you're currently seated. Normally, you would get that signal and simply shift in your chair to fix it. So, you're already talking about clothes without buttons, pockets, or even thick seams on the butt area. And it is common practice to try to take and use your wheelchair cushion on the airplane. Developing a pressure sore is a nightmare. Even mild ones can mean weeks and weeks in bed stuck lying down in positions that prevent you from doing many things you would find interesting. If they get bad... it can get very very serious. If you've ever been in the hospital and developed bed sores, you can only begin to understand.
I know most of this from research when I thought I was going to need a wheelchair permanently. In the US, for those with spinal cord injuries there are hospitals with intensive programs to teach people about their new lives. Many of them are young people who've had some kind of accident--like a car wreck. They wake up in a hospital bed, are told they're not going to walk, and immediately thrown into intensive education programs. This is actually the best case, but you can imagine the psychological experience. During this training they will be doing things to verify you're not going to walk. This provides false hope for almost all of these people, and can lead to years and years of investment in expensive treatment in hopes of walking again. These can range from possibly useful to sketchy stem cell treatments in different countries with less insurance risk... For me, the PT I was provided was enough to get me out of a bed and standing with a walker. The friend who was at the hospital to help take care of me purchased a generic cheap wheelchair at a local pharmacy across the street from the hospital and was wheeled out of the hospital. If I go back, they see a cane, put me in a chair, and put a bright sticker on me that says fall risk.
Hopefully this is informative for some. I had no idea how any of this really was, and I think most people don't. It is essentially that you can't really understand someone until you are in their shoes. And I think in the case of a wheelchair user, you really can't understand unless you have been in one or have spent years caring for someone who uses one and seen the challenges. It really opened my eyes to the fact that I really don't understand challenges other people face from all kinds of things in life.
posted by joelr at 11:44 PM on November 5, 2021 [48 favorites]
If able, most wheelchair users want to be independent. A popular option are push handles that pop down to discourage people from just deciding to push you without asking. Remember, damage to your ability to walk is down there and hasn't traveled upwards and damaged your brain for many conditions. So, you have 7 or 8 measurements for the dimensions of the chair to match the length and width of pieces of your body and then special seating cushions that match your needs. These can be hybrid air and foam and cost well over $500.
The chairs you see at airports and hospitals have a specific name. They are durable, generic, and cheap. They are used in many cases that aren't for the permanently disabled or those with special seating needs. At an airport they are often used to reduce lawsuit risk or for those who usually walk, but are not able to deal with how massive airports are.
Wheelchair users live daily lives as their own advocates. Places like airports are full of employees who are ignorant to the law, don't know how to treat a person who uses a wheelchair, or are busy and just trying to get things done and don't care. Boarding a plane and if you need to use the restroom you are strapped into an aisle chair and pushed around. For a bathroom visit they put you in front of the door and the rest is up to you. There is law requiring some concessions for a disabled bathroom on a plane, but there is usually only one and it only applies to planes of a certain size. Even someone without the need for a wheelchair can sympathize with how much airplane bathrooms suck. Never mind being strapped into a chair like Hannibal Lecter. If you arrive at your destination and your wheelchair is damaged what can you really do? Sure, insurance, a rental or loaner chair that isn't custom to your needs... You will have to order replacement parts that can take weeks to arrive.
If you have reduced feeling below the waist, you don't get signals that say you're uncomfortable how you're currently seated. Normally, you would get that signal and simply shift in your chair to fix it. So, you're already talking about clothes without buttons, pockets, or even thick seams on the butt area. And it is common practice to try to take and use your wheelchair cushion on the airplane. Developing a pressure sore is a nightmare. Even mild ones can mean weeks and weeks in bed stuck lying down in positions that prevent you from doing many things you would find interesting. If they get bad... it can get very very serious. If you've ever been in the hospital and developed bed sores, you can only begin to understand.
I know most of this from research when I thought I was going to need a wheelchair permanently. In the US, for those with spinal cord injuries there are hospitals with intensive programs to teach people about their new lives. Many of them are young people who've had some kind of accident--like a car wreck. They wake up in a hospital bed, are told they're not going to walk, and immediately thrown into intensive education programs. This is actually the best case, but you can imagine the psychological experience. During this training they will be doing things to verify you're not going to walk. This provides false hope for almost all of these people, and can lead to years and years of investment in expensive treatment in hopes of walking again. These can range from possibly useful to sketchy stem cell treatments in different countries with less insurance risk... For me, the PT I was provided was enough to get me out of a bed and standing with a walker. The friend who was at the hospital to help take care of me purchased a generic cheap wheelchair at a local pharmacy across the street from the hospital and was wheeled out of the hospital. If I go back, they see a cane, put me in a chair, and put a bright sticker on me that says fall risk.
Hopefully this is informative for some. I had no idea how any of this really was, and I think most people don't. It is essentially that you can't really understand someone until you are in their shoes. And I think in the case of a wheelchair user, you really can't understand unless you have been in one or have spent years caring for someone who uses one and seen the challenges. It really opened my eyes to the fact that I really don't understand challenges other people face from all kinds of things in life.
posted by joelr at 11:44 PM on November 5, 2021 [48 favorites]
.
This is a horror story. I get scared for my sister, who has had her chair damaged by airlines.
posted by eustatic at 2:55 AM on November 6, 2021 [3 favorites]
This is a horror story. I get scared for my sister, who has had her chair damaged by airlines.
posted by eustatic at 2:55 AM on November 6, 2021 [3 favorites]
This is extremely upsetting and I am so sad to hear this. As someone who travels frequently and uses a wheelchair I can say that it can be awful and at best it's the most stressful thing I do as a wheelchair user. I am never more than a foot or two away from my wheelchair, EXCEPT when I am flying and they take it away from me to put in cargo.
I've been dropped when I have been transferred to the airport chairs and to my plane seat. I have been mishandled such that several times I have slid down and out of the arms of someone lifting me and ended up with my spine resting on the metal edge of my wheelchair. My shoulders have been injured and I've had my pants get stuck and almost entirely pulled down in front of a group of flight attendants just standing there watching. Yet this is nothing compared to what this woman has dealt with.
My wheelchairs have been broken beyond use twice and once my backup chair (I had to take it on a trip because my main chair was getting repaired!) was left in an airport in Gothenburg because they forgot to load it. I literally needed to get a backup to the backup. I've had at least five incidents requiring major repairs. The process to get a chair fixed by an airline is actually too streamlined for my comfort -- it means they do it so often that the system in place to handle it is necessary.
It's a perfect example of capitalism not bending to accommodate humanity. This problem could have been solved fifty years ago or more. If it is possible to do stuff like have this crystal-covered luxury bar on planes, it's possible to have spaces for wheelchairs to be in the cabin so the wheelchair user can roll on and roll off.
Airlines will argue that adding these spaces would reduce revenue but it's highly suspect that this is any more than them just being lazy. I have yet to see ANY airline provide detailed numbers about the impact this would have. Even if a seat or two were lost for every flight that had a wheelchair user who needed extra space, there are ways this can be made up. And let's face it, not every flight is full to begin with so assuming a 100% full flight on every flight is the only way an airline could lose revenue on every flight.
At any rate, it's 2021 and it's about time this bullshit is fixed.
posted by thorny at 3:00 AM on November 6, 2021 [39 favorites]
I've been dropped when I have been transferred to the airport chairs and to my plane seat. I have been mishandled such that several times I have slid down and out of the arms of someone lifting me and ended up with my spine resting on the metal edge of my wheelchair. My shoulders have been injured and I've had my pants get stuck and almost entirely pulled down in front of a group of flight attendants just standing there watching. Yet this is nothing compared to what this woman has dealt with.
My wheelchairs have been broken beyond use twice and once my backup chair (I had to take it on a trip because my main chair was getting repaired!) was left in an airport in Gothenburg because they forgot to load it. I literally needed to get a backup to the backup. I've had at least five incidents requiring major repairs. The process to get a chair fixed by an airline is actually too streamlined for my comfort -- it means they do it so often that the system in place to handle it is necessary.
It's a perfect example of capitalism not bending to accommodate humanity. This problem could have been solved fifty years ago or more. If it is possible to do stuff like have this crystal-covered luxury bar on planes, it's possible to have spaces for wheelchairs to be in the cabin so the wheelchair user can roll on and roll off.
Airlines will argue that adding these spaces would reduce revenue but it's highly suspect that this is any more than them just being lazy. I have yet to see ANY airline provide detailed numbers about the impact this would have. Even if a seat or two were lost for every flight that had a wheelchair user who needed extra space, there are ways this can be made up. And let's face it, not every flight is full to begin with so assuming a 100% full flight on every flight is the only way an airline could lose revenue on every flight.
At any rate, it's 2021 and it's about time this bullshit is fixed.
posted by thorny at 3:00 AM on November 6, 2021 [39 favorites]
Airlines will argue that adding these spaces would reduce revenue
And they would. The proper answer is "so what?" Airlines already do a lot of things[1] that reduce revenue for safety reasons -- the problem here is that airlines are being let off the hook because the safety in question is that of people in wheelchairs, and not the vast majority of travelers. (And it's a more abstract question of safety rather than what people usually think of with airline safety -- i.e., crashes.)
Fuck their revenue. Airlines are among the first with their hands out for bailouts when times are tough, and then full of "fuck you" to their employees and travelers in the name of revenue.
[1] Often because they are forced to, or because it protects the bottom line -- I do believe airlines are absolutely committed to prevent crashes, because they know a major crash that's proven to be their fault is going to affect the almighty brand immediately. A 747 full of Engracias could die every year due to their negligence and the c-suite wouldn't give a fuck as long as the bottom line was protected.
posted by jzb at 9:09 AM on November 6, 2021 [12 favorites]
And they would. The proper answer is "so what?" Airlines already do a lot of things[1] that reduce revenue for safety reasons -- the problem here is that airlines are being let off the hook because the safety in question is that of people in wheelchairs, and not the vast majority of travelers. (And it's a more abstract question of safety rather than what people usually think of with airline safety -- i.e., crashes.)
Fuck their revenue. Airlines are among the first with their hands out for bailouts when times are tough, and then full of "fuck you" to their employees and travelers in the name of revenue.
[1] Often because they are forced to, or because it protects the bottom line -- I do believe airlines are absolutely committed to prevent crashes, because they know a major crash that's proven to be their fault is going to affect the almighty brand immediately. A 747 full of Engracias could die every year due to their negligence and the c-suite wouldn't give a fuck as long as the bottom line was protected.
posted by jzb at 9:09 AM on November 6, 2021 [12 favorites]
Mod note: Comment and a couple replies removed. It's absolutely fine to talk about the problems of medical racism and ableism in this thread, but that should't be held up as an accusation against anyone not specifically saying only the things you prefer people to be saying. Conversations are always going to have multiple aspects and its okay for those things to mingle in the whole.
posted by cortex (staff) at 11:05 AM on November 6, 2021
posted by cortex (staff) at 11:05 AM on November 6, 2021
Airlines will argue that adding these spaces would reduce revenue but it's highly suspect that this is any more than them just being lazy.
So the airlines don't like being cramped?
I've been imagining a change in US taxes where everybody who has over $110 billion dollars is taxed $100 billion dollars. A greed tax. Then, just taking the three most prominent of that crowd, Zuck, Elon, and Jeff, we get $100 billion each for home care, roads, and public schools. According to some trashy celebrity site I just googled, there are 6 in the US. So, half a trillion dollars applied to problems that only affect people who make less than, oh, $50K/yr? Make it some graduated benefit that increases the less you make.
I'm not an econometrician, but I really feel that the zillionaires are the greediest people who have ever lived, and that the ethical issues involved in simply taking the most prominent symbol of that greed are...OH LOOK, just like healthcare, the Western countries with higher standards of living than the US also have asset taxes.
posted by rhizome at 11:43 AM on November 6, 2021 [5 favorites]
So the airlines don't like being cramped?
I've been imagining a change in US taxes where everybody who has over $110 billion dollars is taxed $100 billion dollars. A greed tax. Then, just taking the three most prominent of that crowd, Zuck, Elon, and Jeff, we get $100 billion each for home care, roads, and public schools. According to some trashy celebrity site I just googled, there are 6 in the US. So, half a trillion dollars applied to problems that only affect people who make less than, oh, $50K/yr? Make it some graduated benefit that increases the less you make.
I'm not an econometrician, but I really feel that the zillionaires are the greediest people who have ever lived, and that the ethical issues involved in simply taking the most prominent symbol of that greed are...OH LOOK, just like healthcare, the Western countries with higher standards of living than the US also have asset taxes.
posted by rhizome at 11:43 AM on November 6, 2021 [5 favorites]
I was once discharge from the hospital unconscious. I had had surgery and they previously explained to me that they might or might not keep me overnight, but I was in a pool with several other patients, all of whom were having surgery of one type or another and might need to stay overnight. They had ten beds allotted for patients who needed to be admitted. Since I was young, and the majority of the patients were not, they told me ahead of time that it was highly unlikely that I would get one of the beds.
I was conscious for awhile in recovery, and my vitals were good, so I got my discharge paperwork done. They shifted me from a gurney to a wheelchair. I wasn't up to sitting u though, so I passed out completely while a hospital volunteer was wheeling me towards the front door.
My partner was waiting outside at the curb to receive me, with the kids in the vehicle, but declined to accept me in that state, so the volunteer went back and found a nurse and the nurse came out and poked me until I eventually came to, and they were able to load me into the van.
It wasn't too hard to get into the house on the other end. I got helped from the car door into the house door, and then crawled on hands and knees up the stairs to the floor we lived on.
posted by Jane the Brown at 12:30 PM on November 6, 2021 [6 favorites]
I was conscious for awhile in recovery, and my vitals were good, so I got my discharge paperwork done. They shifted me from a gurney to a wheelchair. I wasn't up to sitting u though, so I passed out completely while a hospital volunteer was wheeling me towards the front door.
My partner was waiting outside at the curb to receive me, with the kids in the vehicle, but declined to accept me in that state, so the volunteer went back and found a nurse and the nurse came out and poked me until I eventually came to, and they were able to load me into the van.
It wasn't too hard to get into the house on the other end. I got helped from the car door into the house door, and then crawled on hands and knees up the stairs to the floor we lived on.
posted by Jane the Brown at 12:30 PM on November 6, 2021 [6 favorites]
I think the opportunity for change is a successful effort to gain attention and pressure changes in law tied to the next airline bailout.
The Tales From the Home videos by Jesi Stracham highlight some stories which were truly scary to me.
posted by joelr at 1:21 PM on November 6, 2021
The Tales From the Home videos by Jesi Stracham highlight some stories which were truly scary to me.
posted by joelr at 1:21 PM on November 6, 2021
My now-deceased mother fell in her home alone a couple years back, and shattered her hip. Fortunately she was found fairly quickly, spent time in the hospital for surgeries, and then went to a skilled nursing facility for rehab for several weeks. She was in no way ready to go home, but the insurance company refused to pay for any more days at the rehab. The doctors there were adamant that she could not go home safely without a wheelchair, but the insurance company refused to pay for one. She was sent home on a Sunday afternoon. I live on the opposite side of the country, and there was literally no one to provide in-home care or oversight that day. The plan was for a friend to go find ANY basic wheelchair from any medical supply store ore second hand shop, first thing Monday morning.
Less than three hours after she arrived home, she fell out of her chair in the living room.
For saving the cost of a simple, basic temporary wheelchair, the insurance wound up having to pay for another hospitalization, another round of surgeries, and another stint in rehab.
What I am saying is: Wheelchairs are critical life-saving devices that should be respected and treated appropriately by anyone who comes into contact with them, and seriously FUCK the American insurance and medical system.
posted by Lokheed at 2:19 PM on November 6, 2021 [15 favorites]
Less than three hours after she arrived home, she fell out of her chair in the living room.
For saving the cost of a simple, basic temporary wheelchair, the insurance wound up having to pay for another hospitalization, another round of surgeries, and another stint in rehab.
What I am saying is: Wheelchairs are critical life-saving devices that should be respected and treated appropriately by anyone who comes into contact with them, and seriously FUCK the American insurance and medical system.
posted by Lokheed at 2:19 PM on November 6, 2021 [15 favorites]
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posted by rrrrrrrrrt at 10:49 PM on November 6, 2021
posted by rrrrrrrrrt at 10:49 PM on November 6, 2021
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posted by spinifex23 at 1:44 AM on November 7, 2021
posted by spinifex23 at 1:44 AM on November 7, 2021
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I could easily come up with dozens more examples of ableism, in large and small ways, because it never stops. No one should have to suffer the horrific experience she and others have, and yet it happens every day.
posted by Alensin at 3:07 PM on November 5, 2021 [7 favorites]