Sunday, July 12, 2015
Weekly Wrap-Up
| Monday, July 6 |  | |
| Tuesday, July 7 | Stuff That Worries Me |  |
| Wednesday, July 8 | Podcast Preview: Seinfeld |  |
| Thursday, July 9 | Digging Into The Employment Gap Throwback Thursday |   |
| Friday, July 10 | ADA Anniversary Twitter Event |  |
| Saturday, July 11 | Talk To Your Doctor |  |
Saturday, July 11, 2015
Talk To Your Doctor
Sarah Kliff, Vox.com - July 8, 2015.
I don’t have a problem with Medicare paying doctors to have “end of life" consultations with their patients. All that talk about “death panels” a few years ago was cynical nonsense, meant to stoke peoples’ fears in order to defeat the Affordable Care Act. I don’t believe there’s a plot to hoodwink people into agreeing to euthanasia or anything like it.
That said, Sarah Kliff is onto something when she writes about peoples’ fear of losing control to professionals and bureaucracies. It’s a real fear, exaggerated, but based on real-life experiences people do sometimes have with merciless insurance companies and dismissive or condescending doctors.
Many disabled people have a related, but different concern. It may be hard for non-disabled people to believe, but I think all of us with disabilities wonder from time to time whether some day our disability-related needs will finally be too much for our coworkers and supervisors, our schools, our families and friends. Long term care is widely understood to be a family problem, a stressor that breaks marriages and causes burnout, for the caregivers. Medical technologies like ventilators and wheelchairs are still spoken of as traps and millstones, not life-savers and mobility aids. Again and again we are told, indirectly but loud and clear, that a significant number of our fellow citizens bitterly resent their tax dollars paying for any of our care and maintenance, which is assumed to be some kind of major risk to public solvency. The constituency of people who argue for legalizing suicide huge, based on the assumption that ongoing life with disabilities is intolerable and any sane person would rather be “allowed” to die. It doesn’t help when experts who one minute are all concerned about peoples’ wishes being known and respected, can’t help themselves from noting how much it costs to keep people alive “on machines."
On top of that, I think there is a legitimate concern that medical professionals tend to view life with disabilities quite negatively, in some cases worse than less informed laymen. To many doctors, disability means life with everyday care needs that will never result in a “complete recovery.” A reasonably good outcome for us may, for many doctors, seem like a professional failure.
The crux of the problem is that too many people confuse disability with this vaguely defined period known as “end of life.” They are not always the same thing.
I’m not worried about people who have lived with disabilities for a long time. We know the score, and we can speak for ourselves in no uncertain terms about what “quality of life” means to us, regardless of anyone else’s perceptions. What worries me is people new to disability, and people not disabled yet, trying to think intelligently about what they would want if and when it happens to them. What will they understand about living with disabilities if they only hear about it from a doctor?
All that can be addressed, however, so that “end of life conversations” can be valuable and empowering. Really, disabled people should push harder than anyone for these explicit, very specific conversations. If we want our lives to be valued, if we want to live no matter what the cost or how scary and icky we look to others, then should use these conversations to speak up and say so, very specifically, individually, to our own doctors.
Which reminds me to stop procrastinating and review my Health Care Proxy and Advance Directives … and to have a conversation about these things with my doctor.
----------
Friday, July 10, 2015
ADA Anniversary Twitter Event
Ellen Blasco, National Museum of American History - July 8, 2015
As I post this, we are only days away from the 25th Anniversary of the Americans with Disabilities Act. If you have disabilities, if you are related to someone with a disability, or if you are just interested in disability issues and culture, I encourage you to join in a day of Twitter discussion about the ADA, hosted by the National Museum of American History, part of the Smithsonian Institution.
I am still working on a complete ADA Anniversary post, with useful information about the law, memories of when it first passed, and an assessment of how effective, or not, it has been. For now, I will just say that I feel like the Americans with Disabilities Act has had more impact as a moral, almost spiritual victory for the disability community, than as an actual civil rights law.
What do you think? What does the ADA mean to you? What are its strengths and weaknesses? How much of a difference has it made in the lives of Americans with Disabilities?
It looks like the Twitter chats happening all day on July 15th will be a great place to talk about it and find out what others think.
Thursday, July 9, 2015
Throwback Thursday
A year ago in Disability Thinking: Handicapped Parking.
It’s always worth reviewing exactly why those designated, marked parking spaces are important.
Digging Into The Employment Gap
How much worse is unemployment for people with disabilities, compared with non-disabled people? While working on the Disability.TV Podcast episode on disability in Seinfeld, I came across a couple of bits where the comedy depends on the idea that disabled people have all sorts of perks and advantages in the workplace.
I get what that’s referring to. People with disabilities do have some specified legal rights in employment that non-disabled people don’t have, and "hiring the disabled" is widely understood to be a good thing to do. I also know that these advantages don’t amount to much, and that disabled people are in fact massively disadvantaged in the job market, at least if employment rates are any indication.
The U.S. Bureau of Labor Statistics now reports monthly on employment of people with disabilities nation-wide. Here is the June, 2015 report:
I circled eight items, each of them a percentage, because I think they are the easiest to understand and most meaningful measurements and comparisons. For one thing, they include only "working-age people" … age 16-64. They also take in two other relevant comparisons: Disable vs. Non-Disabled and Male vs. Female.
Finally, the report highlights two main ways of measuring employment itself: Participation Rate and Unemployment Rate.
The Participation Rate is the percentage of the given population that is either working or looking for work. It doesn’t count retired people or people who are unemployed not actively looking for a job.
The Unemployment Rate is the percent of people in the Participation Rate measure who are not employed. That is, it’s the percentage of people actively looking for work who haven’t found it. Put another way it’s the gap between how many people want and intend to work, and the number who are actually working.
With all of that said, here are some tentative, non-expert conclusions:
- The Participation Rates for disabled men and women are a lot lower than for men and women without disabilities. A far higher percentage of disabled people are neither working nor looking for work than the percent of non-disabled people. 28-34 percent of disabled are working or looking for jobs, while 70-83 percent of non-disabled people are working or looking for jobs. There are probably many reasons for this difference, including self-perception, societal expectations, work disincentives, and the immediate barriers imposed by peoples’ actual disabilities.
- The Unemployment Rate for disabled people is also quite a bit higher than for non-disabled people ... 11 to almost 9 percent for disabled, and only a little over 5 percent for non-disabled people.
- This means that, controlling for people not participating at all in the job market … leaving out people who consider themselves “too disabled” to work … we are still left with a large employment gap. If we go further, and note that there would probably be a lot more disabled people looking for jobs if they felt any hope of finding one that would hire them, then the gap would be much, much higher.
- It is worth noting that the Participation Rate has been growing and the Unemployment Rate dropping for disabled people over the last several months. But we’re talking about improvements in tenths of a percent, nothing to indicate a revolution or some massively successful new policy or approach, at least not yet.
Overall it’s hard to find bright spots or some hidden advantage of being disabled, when only about a quarter of working age disabled people are working, while over three quarters of working age non-disabled people are employed. The numbers certainly suggest that George Constanza faking a disability to get a job is not just funny, it’s nonsense.
---------
Wednesday, July 8, 2015
Podcast Preview: Seinfeld
This week I am working on the next Disability.TV Podcast, which will be about disability on the best sitcom in television history, Seinfeld. I thought this would be a quick, breezy, impressionistic episode. After all, none of Seinfeld’s regular characters have disabilities, and the show itself isn’t about disability. As it turns out, there’s actually a lot of disability stuff to re-watch and talk about.
I have picked out eight storylines that focus on disabled characters or disability themes. None of them are what I would call “positive” depictions of disability. Yet, they are all interesting and worth watching, because in most of them there are interesting ideas to chew over about how non-disabled people view disabled people and disability issues.
The videos below are from three of the disability stories that I will explore in the podcast. Look for the episode here on Saturday.
Er, yeah, there's sexism, too.
Every episode of Seinfeld is now available on Hulu.com. I also want to thank Vinnie and Matt, the hosts of Seincast: A Seinfeld Podcast for their thoughts and advice.
You can also subscribe to the Disability.TV Podcast, and leave ratings and comments, at iTunes or Stitcher. Please consider supporting the podcast and this blog by becoming a Patreon sponsor. Any way you can help, I appreciate your support.
---------
Tuesday, July 7, 2015
Stuff That Worries Me
I’ve decided to start a new recurring feature called "Stuff That Worries Me."
Obviously, I wouldn't bother writing about things if I didn't want people to pay attention and maybe see things my way. That said, I hope readers will take these as just things I'm thinking about, not dire warnings or bitter, angry criticisms. You could call it "Concern Trolling," but my understanding is that true Concern Trolls use "self-criticism" dishonestly, to deliberately lead astray.
My worries may well be unwarranted, nitpicky, and annoying, but they'll at least be honest ... what I am actually thinking ... and from a disability rights perspective, not some other ideology in disguise.
Here’s the first one:
Whenever I talk to non-disabled people and try to describe the things that disability bloggers blog about, it all sounds a lot less important coming out of my mouth than when we blog amongst ourselves. This reminds me that most people still don't get why "disability issues" are important. People realize they are important to us, but not IMPORTANT. Most people don’t have any strong opinions about disability issues, and can’t really imagine them being interesting to anyone outside the disability community.
On the other hand, this feeling might also indicate that some of what we blog about is, in some sense, actually trivial. That's fine for some of the things we’re passionate about. But, I worry that if we can't prioritize issues within the disability community, how can we hope to focus everyone else's attention on what's really urgent?
---------
---------
Monday, July 6, 2015
Ideas, Not Mandates
So, first I read this blog post by Rob J. Quinn:
Rob J. Quinn, I’m Not Here To Inspire You - June 29, 2015
"But as I peruse Twitter and the blogs of people who specifically don the cap of advocate, I recently came across the term ableism. It’s apparently our version of racism, and to my surprise the term has been around for a while. And I wonder, as we tweet and write at the top of our lungs about the injustice that people with disabilities often face—the latest issue seemingly piggybacking off he Supreme Court ruling giving homosexuals the right to marry to discuss the “marriage penalty” some people with disabilities face in losing benefits due to a spouse’s income—how this post will be viewed."
"Am I being ableist against my own community for pining to be able-bodied? Am I rejecting my own identity?"
I started thinking about responding to this piece, mostly to reassure Rob and other fellow disabled people that we all have moments and days when we are sick of being disabled. And I’m not talking just about being sick of the inaccessibility and ableism that make us more disabled … though there is that … but also being sick of our own, actual physical or mental conditions.
Then, just a day later, I ran across a post on Tumblr, a reblog by Wheelchair Problems of a post by Fuckyoumyalgia:
"all of these are perfectly valid relationships to have w/ your disability. none of them are wrong or right or inherently healthy or unhealthy. they just are what they are. if you wanna improve your relationship w/ your disability that’s fine. if you don’t that’s fine too."
"the only thing that’s not fine is telling someone that their relationship w/ their own disability is wrong"
Bingo.
The thing is, it’s possible take some of the most commonly talked about tenets of “disability culture” as mandated beliefs or litmus tests. But really they are just ideas meant to break people out of far more common and truly self-destructive ideas people have about disability.
Too many disabled people think as Rob did about his disability, but all the time, not just for a moment or a day. Too many disabled people view accessibility as a special benefit and accommodation as some kind of favor. Too many disabled people internalize low expectations for themselves and spend their whole lives wishing they were normal.
That’s partly why disabled activists and Twitterers hammer on self-acceptance, double down on not wanting to be “cured”, and “call out” ableist language and “inspiration porn.” There are directions in disability thought that seem to be more productive and helpful for disabled people in the long run, and they mostly revolve around self-acceptance and asserting our rights. That doesn’t mean we are all obligated to feel proud, empowered, and bad-ass 24/7.
Because as the Tumblr post suggests, two other pillars of disability culture are personal choice and no longer allowing ourselves to be shamed. It is important to promote emerging progressive ideas about disability, if for no other reason than to make sure disabled people know there are many ways to think about their disabilities. But it will never do for us to tell each other that any of us are doing disability wrong.
Sunday, July 5, 2015
Weekly Reading List
A selection of disability-related articles and blog posts I read last week, but didn’t have a chance to link to or discuss. It’s an opportunity to catch up with some of the good stuff that’s out there, but doesn’t fit neatly into the week's “big stories.”
Dominick Evans - June 29, 2015
Trigger warning, I guess, for an emotionally hard-hitting account of abuse and neglect of a disabled person. I read this several times, so I could appreciate it on a few different levels. Two things in particular stay with me:
1. Dominick provides a very clear and full explanation of what Personal Care Attendant services are for and how they work. It’s a surpassingly hard thing to explain to people who have no exposure to it, yet it is absolutely central to the lives of so many “severely” disabled people.
2. The article also shows how “emotional” abuse can be as harmful as physical abuse. For those who don’t experience it, emotional abuse can seem like a slippery idea, something bad but not in the same league as being beaten up. But so often it is just as damaging, or more.
The article is worth reading, even if it’s painful.
Suzanne Barlyn and Elizabeth Dilts, Reuters - July 1, 2015
This news article relates in a way to Dominick’s article above. I say that because both articles either explicitly or implicitly suggest the need for some outside, third-party authorities to protect “vulnerable” people. The need is there for something, but protective measures always run the risk of robbing the beneficiaries of choice, control, and agency. Fighting abuse and exploitation isn’t simple.
Mike Ervin, Smart Ass Cripple - June 23, 2015
Another terrific piece by Smart Ass Cripple. We talk a lot about better accessibility being good for businesses, but how do businesses decide which markets matter and which don’t? Why do disabled customers always seem to be at the bottom of their priority lists?
Meriah Nichols, A Little Moxie - June 26, 2015
This may be the best article on disability terminology I have ever seen. Mariah captures both the information and the tone of debate over what we call ourselves and what we want others to call us.
Maria Town, CP Shoes - July 4, 2015
It’s kind of ridiculous how happy it made me on the 4th to learn that one of the signers of the Declaration of Independence had a disability. And the man’s quote is a real winner. It should be one of the disability community’s iconic statements.
Weekly Wrap-Up
| Tuesday, June 30 | Revisiting "The Man He Became": Part One |  |
| Wednesday, July 1 | Revisiting "The Man He Became": Part Two |  |
| Thursday, July 2 | Revisiting "The Man He Became": Part Three |  |
| Friday, July 3 | Disability Blogger Link-Up |  |
| Saturday, July 4 | Awareness Or Activism? |  |
Saturday, July 4, 2015
Awareness Or Activism?
John Pring, Disability News Service - July 3, 2015
You don’t have to understand the intricacies of disability policy in the UK to realize that this article is about the enduring conflict between two approaches to disability advocacy … Activism vs. Awareness.
There are many ways to define these terms. What we see here is two different ways to accomplish roughly the same goal, significantly improving employment prospects for people with disabilities.
The Awareness approach is to persuade employers to hire more disabled people. It’s based on the assumption that the unemployment is high for disabled people mainly because employers don’t understand disability and harbor misconceptions about the capabilities of disabled people. If we can just reach all he employers, sit them down, explain where their thinking is off base, and maybe introduce them to a few highly capable and charismatic disabled people, then things will change for the better. All this requires maintaining more or less friendly, patient relations with employers. Employers don’t have to attend our seminars, and in fact, hiring itself is basically a matter of choice, not obligation, so accusing and alienating employers won’t help.
The Advocacy approach focuses more on structural issues that hold down employment of people with disabilities. This may include work disincentives, (in which you actually lose money due to reduced benefits when you take a job), a mismatch between open jobs and applicants’ qualifications, inaccessible workplaces, and both deliberate and unconscious discrimination. After decades of anti-discrimination laws that often seem toothless, it is easy to conclude that employers will never change their practices unless forced to do so. In this view, disability awareness seminars, corporate-level networking, and aspirational slogans are wastes of time. Worse, they can function as cover for people who don’t want to do anything of substance, but need to appear as if they are.
The Awareness approach is generally optimistic, but runs the risk of being naive, and coopted and hijacked by the people we are trying to persuade. As the article linked above suggests, it is frighteningly easy for bureaucracies to cynically adopt progressive rhetoric that bares no resemblance to their policies and practices.
The Advocacy approach is, at least on the surface, pessimistic, and many people unpleasant, but may be more realistic and effective when carefully targeted. Personally, I prefer Awareness as an activity, but I have more actual faith in Activism to actually accomplish things.
Within the disability community, these two approaches are not just strategies, they are separate subcultures.
Activists and awareness people rarely work together or talk to each other. And people seem to gravitate towards one or the other approach naturally, based as much on temperament as philosophy. Some of us enjoy teaching and shmoozing. Others prefer campaigning and protesting. For some, asking people to change feels like begging. Others don’t like the anger and sometimes irrationality they perceive in activism. It is both a strategic and a personal choice.
I still think there are arguments on both sides when it comes to improving the employment picture for disabled people. I’m skeptical that mere persuasion and “disability awareness” will ever make much of a difference in employment. Yet, I’m equally doubtful about how effective any sort of hiring quota or mandatory system would be in the long run. Both approaches seem rather futile to me.
How do we dramatically improve employment for disabled people? It’s one of the few disability rights questions I really don’t know how to answer.
----------
----------
Subscribe to:
Posts (Atom)