Saturday, July 12, 2014
A Revealing Chart
I’ll have more to say about this chart tomorrow, but for now, let’s just ponder for a moment how many Americans have a disability of some kind, and how many actually collect Social Security Disability benefits.
From Media Matters, via Wheelie Wifee.
The Thing About Sheltered Workshops ...
I’d love to see sheltered workshops banned, phased out, or just plain abandoned. I think they might have been a good idea once, but at this point their weaknesses are plain to see, and they are based on ideas about disability that are no longer valid, if they ever were.
It looks like a renewed version of the federal laws shaping vocational services for people with disabilities is going to be signed soon, and it will include some steps to curb and discourage use of sheltered workshops. It doesn’t ban them, nor does it end the practice of paying below minimum wage. My simple, only moderately informed take is pretty much in line with that of the National Council on Independent Living … that it’s better than nothing.
I also have another thought on sheltered workshop that doesn’t seem to be talked about much. What bothers me most about sheltered workshops is that they are dishonest; they systematically lie to the people they are intended to serve. The tell and / or imply to the people with disabilities who “work” in them that they are “workers” doing a “job”, when in reality, they would be better described as students, clients, or even patients receiving services, or in the worst cases, warehoused and monitored. So, if Congress isn’t ready to ban sheltered workshops yet, I have another idea:
Stop calling what disabled people do in sheltered workshops “jobs”. Call them day programs. Call it work readiness training. Just don’t lie to disabled people and tell them they have a job when it really isn’t one.
If, on the other hand, these organizations want to contend that they are real workplaces … that the disabled people are employees doing jobs, then they should pay them minimum wage or above. The workers should be subject to the same responsibilities and rights that workers have in other non-sheltered jobs. They should be treated like employees, not students, clients, or patients. And if you’re going to do that, why not just ditch the whole “sheltered” part and provide the extra coaching and closer supervision they need individually, in real workplaces. Oh, wait, that’s already being done. It’s called Job Coaching or Supported Employment, and lots of organizations that used to run sheltered workshops gave that up and shifted to Supported Employment. So it can be done.
But again, if we’re not prepared to make that shift, let’s at least be honest about what they are really doing, which, at best, is providing training and structured day activities.
I might have different priorities if I actually worked in a sheltered workshop, but as a disabled person who has met and spoken to a fair number of sheltered workshop “workers”, what bothers me most is implication that sheltered workshop workers are too “simple” to know the difference, or mind. News flash, most of them know what they’re doing isn’t normal, and they do mind.
Friday, July 11, 2014
Health Care Survey
If you have a disability, or are connected in some personal way to the disability experience, I urge you to click the link above and complete the online survey from the University of New Hampshire, about your experiences with health care. I’ve done it, and it seems really well-designed, and best of all, brief.
It’s good to see some attention focused on the gaps and differences in how disabled people experience health care.
Quote
“You listen to me grasshopper. There is going to be a million Buddy Garritys out there, who will try to tell you aren't worth anything. And you just gotta look 'em right in the eye and flip him the bird … ‘Cause the Buddy Garritys of this world, they’re a cancer to you and me.” — Herc talking to Jason, Friday Night Lights.
A Little Moxie Summer Blog Hop - "Talking Raw, Talking Real: Challenges Related to Disability"
Most of the time, the challenges related to disability aren’t about disability alone. In my experience, and observing the experience of others, 75% of the time, it's actually about disability and something else:
Social stigma … Everything from mild awkwardness and ignorant comments, to open ridicule and bullying. They invade our space when we least expect it, an it hurts in a very personal way. In some ways, it’s the least significant problem we face, but in other ways, it’s the most painful.
Discrimination … Prejudice put into action, where it concretely affects our mobility, inclusion, and opportunities. People can think what they like about disabled people, but prejudice causes real, lasting harm when we lose a job opportunity because of it.
Poverty … Money can’t buy happiness, but it can buy off a lot of the hardships of many kinds of disabilities. Money can buy ramps, lift vans, decent wheelchairs, tutors and therapists, and pay other people to help us do the things we can’t do for ourselves. The flip side is that when we don’t have money, everything about our disabilities becomes exponentially harder.
Segregation … Being cordoned off into “special” programs of any kind may seem to have superficial advantages, but the harm is deeper and longer term. Separate is not only unequal, it is artificial, inauthentic, and it provides cover for neglect and abuse. Plus, segregated programs are almost always maintained for the convenience and comfort of people other than the actual disabled people they’re supposed to serve.
Lack of agency … In little ways and big, we are often treated as something less than complete human beings. Most people don’t realize they are doing it, and very few believe we are literally inferior. Yet, we are treated like a bundle of symptoms and behaviors. Adults are treated like children or tweens. People speak to the person with us instead of directly to us. Even our families sometimes seem to forget that we are people ... not symbols or tests of their moral character. In many ways, the biggest challenge of disability is simply to assert and maintain our basic personhood.
Disabilities impose themselves every day, and occasionally they can be very sharp and punishing. But disabilities are different and distinct from the hardships associated with them that are imposed from the outside. The good news is that most of them are easier to fix, both personally and systemically, than most disabilities. It doesn’t always seem that way, and lots of disabled people would disagree, I think, but I believe it is true.
Disabilities are largely beyond our control. Human behavior is not. The real challenges of disability are the “… and other things” that go along with it.
Thursday, July 10, 2014
Lexicon: "Normal People Sick"
An informal way of differentiating between acute illness, and chronic illness or disability. As in, “This isn't the usual fatigue, I'm normal people sick!” Short-term illness that anyone can experience, not illness that is chronic or a side effect of a long-term condition or disability. The term also helps to underscore the idea that disability is not the same thing as illness or sickness. One can be disabled and healthy, or disabled and temporarily sick. A paraplegic (disabled) can, for a short period of time, have the flu (normal people sick). It can be especially helpful and clarifying for people with chronic pain or chronic illness, by identifying symptoms that can be readily cured or relieved, (like appendicitis or a cold), as opposed to symptoms that are chronic, incurable, or that can at best be managed, (like asthma, or joint pain from arthritis) ... a.k.a. “Regular People Sick”.
Comments? Clarifications? Corrections? Click below and have at it!
Comments? Clarifications? Corrections? Click below and have at it!
A Small Point About "Friday Night Lights"
On a whim, I decided to re-watch “Friday Night Lights”, the under-watched and highly rated drama about high school football in rural Texas, that included a character, Jason Street, adjusting to on on-field spinal cord injury. I blogged about him before a couple of times when I was watching the show for the first time. This time, I noticed a seemingly small point that I think actually says something pretty important about how most people view disability.
Early in the first season … soon after Street's injury ... his girlfriend, Lyla Garrity, chatters on and on about all of the spinal cord injury treatments and success stories she found on the Internet. It seems like a realistic plot point. In real life, a young injured man’s girlfriend, mother, or father are surely going to Google “spinal cord injury” to find out what can be done … by which I mean what can be done to repair it.
I wonder though, why doesn’t Lyla Google “living with spinal cord injury”? I can understand her not thinking to do so early on, but even later, after it becomes clear that Jason won’t walk again, nether Lyla, nor Jason or anyone else does any apparent research to learn about how people with spinal cord injury live. Jason learns some of these things through his rehab experience, where he also meets some bad-ass guys in wheelchairs who give him a more nuanced perspective on things. But nobody else seems to bring the same level of resourcefulness, dedication, and hopefulness to the task of helping Jason live a full life, as they did to the task of curing him. Once Lyla realizes that Jason won’t walk again, her fervor wanes. She doesn’t immediately drop him, and when they break up she’s conflicted about it, but she was massively fired up when the goal was to cure Jason, yet never mustered any enthusiasm for helping him live with his injury.
No matter what we think and say about it, in general, society still views curing or at least masking a disability as a mission, and adjusting to and living with a disability a compromise. One inspires enthusiasm. The other, resignation. I understand enthusiasm for recovery, especially while there’s still some reasonable hope for it. But why don’t more people bring the same kind of excitement to exploring life with a disability?
This little scene also raises another question for disability bloggers and blog readers. We know how much great stuff there is on the Internet, by and for people with disabilities and their families, demonstrating every conceivable perception of every disability imaginable. The question is, do people who most need to read our stuff actually find it? Or, is the problem that people new to disability aren't ready to explore disability life and culture, even if they do run across it?
More about "Friday Night Lights" in Disability Thinking:
Wednesday, July 9, 2014
Handicapped Parking
Chelsea Rarrick, WTVR Channel 6 Richmond, VA - July 9, 2014
This looks like a fairly typical local news story about disabled / handicapped parking … maybe a bit better than usual. It seems like it covers two sides of the same coin … people who misuse handicapped parking permits, and people who wrongly assume that any driver who walks away from a car parked in a handicapped spot must be misusing a handicapped parking permit.
One thing I think is missing from discussions about handicapped parking is that there are several distinct ways it benefits disabled people.
The most obvious is that it allows us to park closer to the entrance of the place we are visiting, so we don’t have to wheel or walk as far as we would if we had to park further away. For some, it is important because the way we move is harder than walking. For others, it’s that we are limited by pain or endurance in how far we can walk without a significant rest.
A somewhat different benefit is that when handicapped spaces are present, it reduces the chance that we won’t find anywhere at all to park. For many of us, just going out is big production that consumes a lot of physical and mental energy. It’s hard to explain to non-disabled people how demoralizing it is to get yourself out to your car, drive to the place you need to visit, and then find that because there is no parking available of any kind, you will have to go home again empty handed. And, your will probably have to do it all over again soon, because you still have those errands to finish. This is less likely to happen if the right number of handicapped spaces are properly placed and marked.
Knowing that handicapped parking spaces are available gives us added assurance that we can go out and successfully complete our errands, without becoming so exhausted that we can’t move for days. By extension then, if handicapped parking were to be eliminated somehow, or if a disabled person lost their permit for some reason, it would cause us to go out less, and be more “home bound” than necessary.
Put another way, handicapped parking gives both practical and theoretical benefits. It makes a more active life physically possible, and psychologically a little less scary.
So, yes, we REALLY DO need disabled parking.
Tuesday, July 8, 2014
Here It Comes ...
Greg Sargent, The Washington Post - July 7, 2014
Rebecca Vallas and Shawn Fremstad, Center for American Progress - July 8, 2014
Looks like we may soon have a fight on our hands, similar to what’s been going on in the United Kingdom. There, the widespread, urban myth perception that massive numbers of people collecting disability benefits aren’t *really* disabled has been weaponized into policy, with results that are both tragic and ridiculous. Take a halfway decent idea … encourage disabled people to work if it’s possible … and implement it through contractors whose profit depends on cutting people off benefits, and you may get some savings, but you’ll also get human suffering on a grand scale.
If anything like this truly gets off the ground here in the U.S., one of my greatest fears is that disabled people who are less targeted as possible “cheats” will join in the witch hunt for other gray-area Disability recipients … people with less familiar, and more stigmatized conditions. It’s nice to think that when threatened, a diverse group of people will come together to defend their rights, but often, they subdivide instead and “eat their own”. I hope that doesn’t happen to us.
It’s not too early, either, for disabled people to learn more about the finances and politics of Social Security Disability, so we have rational arguments other than, “Don’t cut my benefits please”, if and when the axe comes out.
Monday, July 7, 2014
Subscribe to:
Posts (Atom)