I'm looking forward to the next American Horror Story … Freakshow, because I am anxious to find out whether Ryan Murphy and his excellent troupe of actors manage to mix some humanity in with what I am sure will be plenty of gaping at freaks. I’m not optimistic, but you never know ...
Monday, July 14, 2014
Sunday, July 13, 2014
The Thing About Social Security Disability ...
I wrote about this last fall when both 60 Minutes and NPR did stories about how Social Security’s Disability rolls are, supposedly, out of control, stuffed with hard-luck cases turning to Disability for want of anything else to do. Aside from the fact that there are a dozen complex reasons why more people are on Disability than there were a few years ago … still only a fraction of Americans who have disabilities … these stories and the more recent “concerns” assume things about employment and Social Security Disability that don’t stand up to deeper thought:
- The idea that there is a job out there for everyone, and that if you don’t have a job, it’s because you aren’t trying hard enough.
- That if we could somehow drastically narrow the entry gate for Social Security Disability so that only the “really" disabled could get it, all the people cut out would just get jobs or, somehow, find other benefits.
- The notion that there is some common sense, obvious difference between “truly” disabled people … who are sympathetic, honest, and deserving of help, and the sad-sack, inadequate, possibly lazy, and not really disabled losers who use Disability, cynically, because the system allows them to.
There are other issues involved, some of them legitimate and worth careful, thoughtful study. For instance, there are still disincentives to working for people with disabilities on benefits who want to work and have the potential, and not enough people know about the work incentives that are already available.
I’m afraid that instead we will get hysteria and shaming, plus a noxious dose of “divide and conquer”, as “real” disabled people are encouraged to resent the “fake” disabled … people with chronic pain and fatigue, learning disabilities, psychiatric conditions, workplace injuries that won’t heal but aren’t immediately visible, and of course older people with any number of chronic conditions who also happen to have lost their jobs and can’t find new ones.
Meanwhile, only a very few brave advocates and politicians are willing to propose the novel idea that maybe the rise in need means we should be spending more on Disability. Maybe … just a thought.
Weekly Wrap-Up
Sunday, June 29, 2014
Monday, June 30, 2014
Tuesday, July 1, 2014
Wednesday, July 2, 2014
Thursday, July 3, 2014
Friday, July 4, 2014
Saturday, June 28, 2014
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
Subscribe to:
Posts (Atom)