I wonder how Jenny is doing now? I wonder if she’s still living with the couple who were supportive of her. I wonder if her parents have gotten used to Jenny’s new life, or if they’re still bitter and afraid that something terrible will happen to her. I wonder how many more people like Jenny have exercised greater autonomy thanks to Jenny’s advocacy and the court’s decision.
One of these days I probably will shut up about Ironside. It’s still one of my favorite TV depictions of disability though, and I still think it’s under-appreciated inside disability culture. That’s understandable. It’s a very old show, at least 3 generations back from the current generation of TV shows. And it looks it. Pretty much everything about it, from the formulaic plots, visual style, and strained efforts to keep everything light and frothy, smack of the kind of TV everyone’s grandparents enjoyed. It also has a fatal flaw in today’s standards of progressive TV. Chief Ironside is a disabled character played by a non-disabled actor. Still, Ironside is remarkable for how it normalized a pretty significant disability, and made it work in a decidedly mainstream show that was extremely popular in its day. At the same time, it occasionally dug into the deeper issues of disability in ways that very few current TV shows or movies ever manage to do. For the umpteenth time, I recommend watching Light At The End Of The Journey. It shows how Ironside’s disability is both a minor visual detail and, on occasion, an absolutely meaningful plot point.
This week I am posting links to articles I have collected the 25th Anniversary of the Americans with Disabilities Act. The “mainstream” press rarely covers disability issues in any sort of depth. That’s why I decided to stick with the more journalistic pieces, even though most of what I have read about the ADA this week was on personal disability blogs and social media sites.
It’s all about the video above, which I have posted before on this blog. As the man in the video says, there’s a fine line between empowerment and pity. I think there are two key factors. First, it seems like the capitol crawlers wanted to do it, and came up with the idea themselves. Second, they did it for their community, not for themselves.
Robert L. Burgdorf Jr., Washington Post - July 24, 2015
This is the kind of history I love, and I’m amazed at how little I knew about the origins of the ADA. But to me, this is the most important sentence:
“After conducting consumer forums around the country, NCD concluded that discrimination was the biggest problem facing those with disabilities."
It’s easy to forget what a radical conclusion that was at the time. For many today, it’s still a surprise and a revelation that disability discrimination is, in fact, worse than disability itself.
News stories about ADA lawsuits usually make them sound either vaguely sleazy or unrealistic and selfish. This article shows how lawsuits are sometimes necessary to move progress along, and ensure justice for individuals who need it.
The Title I employment provisions may be the least successful part of the ADA, if success means a major shift towards employment for all people with disabilities. But I don’t think the ADA was really designed to deal with macro-level employment gaps. It’s better suited to dealing with very specific individual employment matters. And as a civil rights law, the ADA has nothing at all to do with preparing people for jobs. It removed some barriers to entry, but it was never meant to push people through.
Ananya Bhattacharya and Heather Long, CNN Money - July 26, 2015
Reading about the blind man at the start of this article, I wonder for the millionth time why there aren’t more disabled people who file complaints and sue under the ADA when faced with such straightforward discrimination and lack of accessibility. But it takes resources to pursue complaints and lawsuits, neither of which are likely to make the plaintiff more employable. Especially with employment discrimination, there’s something missing in the ADA, but I don’t know how it could be fixed.
Did the ADA make it harder for disabled people get jobs? It’s an interesting thought that makes some kind of sense, but I’m not convinced the law has been a net negative. After reading this article, I have the feeling that for many of us, the problem is that we are distracted by so many little inaccessibilities, discriminations, and disincentives before we even get to the workplace, and I think employers sense that. They might not think, “I don’t want to hire a disabled person,” but they will think, “This person’s life is too complicated, how would she stay focused on the job?” If the rest of our lives were smoother and more secure, I think we’d be more convincing in the job market.
I agree with Dot Nary’s strategy of letting smaller businesses go with some education, while saving really aggressive advocacy for the big companies that “should know better.” In rural towns like mine, though, that might not be enough. The bigger companies are all on the outskirts of town, and are mostly accessible by now. It’s just that a lot of disabled people can’t get there. The businesses they can reach tend to be smaller, in those old downtown buildings that ALL have steps up and narrow doorways. Eventually, something has to be done about them, too. And after 25 years, “eventually” is, arguably, now.
***
I have to say I’m disappointed that neither of my two favorite news websites, Vox.com and FiveThrityEight.com have posted anything about the ADA anniversary. I wonder if these were conscious editorial decisions, or just carelessness.
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.
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.
From the announcement by the Disability Visibility Project:
Purpose
To celebrate the rich diversity of the disability community and the impact of the ADA on our everyday lives and activities.
How To Participate
1) Tweet your story! It can be a written message, selfie or a photo of things you see in your community that relates to disability rights. Be sure use the hashtags #OurADAStories and #ADA25 in any tweets! Follow @DisVisibility for updates.
2) Post an image or written message to the Disability Visibility Project’s Facebook group (you have to join first). If you post an image to this group, please include a written description of your image.
The idea is to share your personal thoughts, experiences, and feelings about the Americans with Disabilities Act … in words and / or pictures. How has it affected your life? What are the law’s strengths and weaknesses? How has the ADA made your community better for people with disabilities?
This initiative will run from now until July 26, 2015 … the 25th Anniversary of the Americans with Disabilities Act.
This is the second part of a multi-part series of posts on disability and politics. My aim is to air out some thoughts and ideas that I think are important for disabled people to consider as we here in the U.S. gear up for another General Election in 2016. We all have our own political beliefs and natural leanings, which probably don’t change much just because we have disabilities. Still, having disabilities does give us insight into some important political and policy questions … insight that others might not have.
At the same time, I think that we are also sometimes vulnerable to some popular political opinions that tend to make us feel less important, less worthy of consideration and even political power than we should be as disabled citizens.
Take these thoughts for what they are, ideas to chew over.
Part 2: Rights, Not Privileges
- As disabled people, we sometimes get confused about the difference between rights and privileges, between accommodation and favors.
- Because equality for disabled people usually requires being treated differently, you will sometimes hear accessibility, accommodations, and supports described, in a mean way, as “special privileges.” The idea is that things like handicapped parking, workplace accommodations, and financial supports make our lives easier than everyone else’s.
- You have the right to accessibility and individual accommodations to your disability. These are not privileges you have to earn. They are not favors you have to rely on kind people to do for you. They get you closer to equality, not superiority or higher privilege.
- You earn human kindness and friendships by being a nice person. You may find you can earn an easier life, including some luxuries, by hard work and ingenuity. But you don’t have to earn your continued existence, or equal respect and opportunity.
Cara Liebowitz, That Crazy Crippled Chick - April 20, 2015
I’m sick, I guess, and I have a doctor’s appointment today, but I’m at least going to start working on my own thoughts on positive effects of the ADA. Emily and Cara want bloggers to send them articles on this topic, that they will put into a link-up, to mark the 25th Anniversary of the Americans with Disabilities Act.
Meanwhile, if you want, use this post’s Comments to offer your thoughts on the ADA. Of course, you may also want to write own post for the link-up. If you do, email it to: wordsiwheelbyblog@gmail.com
Mike Krings, KU News Service, The University of Kansas - February 10, 2015
Well, bravo. Seriously. It’s rare to see such an unequivocalstatement in favor of inclusion.
I’m not knowledgeable enough to comment on the details of what these professors are proposing. I do want to note a few things:
- It’s great to see full inclusion strongly endorsed without the usual caveats and reservations.
- It blew my mind a little seeing the Education of All Handicapped Children Act of 1975, (now called the Individuals with Disabilities Education Act or IDEA), described as a law to segregate kids with disabilities, as if that was its purpose. I always understood the law to have been intended to provide education to kids with disabilities that previously had no legal guarantee of it in any form. I think what they are saying here is that the law ended up increasing segregation by turning education of disabled kids into a speciality.
- Calling Special Education “a place rather than a system of supports” is spot-on. That is what it has been for decades. Most schools it still treat Special Education that way.
- It’s a broken record in the disability activist community, but bears repeating … How can we still be talking about inclusion as if it’s a new idea we might, maybe be ready for, when it has been a core principle of federal Special Education law since at least the early 90’s?
- Reading "Special Needs Parent" blogs, I’m worried that segregation may be coming back into style among parents of kids with disabilities. It used to be the more apathetic or intimidated families that went along with keeping disabled kids in separate classrooms. Now we have a lot more parents choosing either homeschooling or private schools specializing in disabled kids. It seems like a rejection of public schools, and a vote of no-confidence for Special Education. Yet, the results tend to be just as segregated and isolating as Special Ed at it’s worst.
- Broadly speaking, I think public education in the U.S. is unfairly maligned. However, Special Education does seem to be a very “special” subculture within public education, where there are plenty of great people entangled in an outdated, bureaucratized system that is defensive and resistant to change. Special Education is in reality what all of education sometimes appears to be.
This statement from the disability rights organization Not Dead Yet was prompted by a specific, “inside baseball” sort of event, but the statement turns out to be a very effective explanation of why many disabled people and disability organizations oppose legalization of assisted suicide and euthanasia. Plus, it underscores crucial differences between disability opposition to these causes and the “right to life” movement.
The disability rights argument against assisted suicide and euthanasia is almost entirely different than the traditional moral / religious arguments against them, and organizations like Not Dead Yet should not be conflated with conservative and religious organizations like the Family Research Council and Right To Life. There is definitely some overlap in regard to policy, but very little in ideology.
The fact that I oppose assisted suicide and euthanasia doesn’t indicate that I’m a right-winger or religious fundamentalist. Far, far from it. By the same token, agreement on this particular policy issue doesn’t mean that religious right groups necessarily understand or really care about the disability rights perspective.
You can see similar clarifications being mapped out right now over Senate Bill 334, which would ban abortion based on disability or gender. I admit, it’s messy. But the distinctions make sense and they are more or less consistent.
Really well done. Similar posters could be made to deliver the same type of message to disabled people of all genders and ages, too, including disabled children and teens, and elderly people with age-related impairments.
Andrew D. Pulrang
Disability life, ideas, identity, culture, commentary, and politics.
