Weekly Reading List - Happy Birthday ADA Edition

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.

A NEW 'COMMON IDENTITY' FOR THE DISABLED

Joseph P. Shapiro, Washington Post - March 29, 1988

This is a good place to start … an article on the ADA from 1988, just before the first bill was introduced for the first time.

The Americans With Disabilities Act Is Turning 25. Watch the Dramatic Protest That Made It Happen.

Samantha Michaels, Mother Jones - July 25, 2015

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.

Why I wrote the Americans with Disabilities Act

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.

In Helping Those With Disabilities, ADA Improves Access For All

Joseph Shapiro, NPR.org - July 24, 2015

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.

25 years after passage, Americans with Disabilities Act has improved the lives of millions

David Crary, Fox Business / Associated Press - July 25, 2015

This is a very good overview of the ADA’s history and effect, taking into account both praise and criticism.

In 25 years, ADA broke down barriers for the disabled, but the workplace is the next frontier

Lorraine Mirabella, Baltimore Sun - July 25, 2015

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.

America still leaves the disabled behind

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.

Why Disability And Poverty Still Go Hand In Hand 25 Years After Landmark Law

Pam Fessler, NPR.org - July 23, 2015

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.

Woman in wheelchair who fought for Disabilities Act can’t use tour bus

Petula Dvorak, Washington Post - July 20, 2015

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.

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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.

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Talk To Your Doctor

Medicare wants to pay doctors to talk about death. Expect political controversy

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.

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ADA Anniversary Twitter Event

Share #DisabilityStories on Wednesday, July 15

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.

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Signal Boost: "Our ADA Stories"

The Disability Visibility Project is partnering with the National Council on Independent Living for a social media campaign called #OurADAStories.

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.

Click here to read more about the campaign.

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.

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Poly Sci For Disabled People - Part 2: Rights, Not Privileges

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.

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ADA 25th Anniversary

25 Ways the Americans with Disabilities Act Sparked Positive Change in the United States

Emily Ladau, Words I Wheel By - April 20, 2015

ADA Generation Girl: Reflections on the 25th Anniversary of the ADA

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

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Education, Segregation, Isolation

It's time to end segregation of special education students, professors say

Mike Krings, KU News Service, The University of Kansas - February 10, 2015

Well, bravo. Seriously. It’s rare to see such an unequivocal statement 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.

 

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An Important Clarification On Assisted Suicide

NDY Is Not Working in Coalition with the Family Research Council – And Here’s Why

Diane Coleman, Not Dead Yet - January 19, 2015

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.

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Wider Application

Via The Cryptic Cripple Tumblr blog.

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.

The Boy With The Cane. Or, What The Heck Is A "Pool Noodle"?

School punishes blind child by taking away cane and replacing it with a pool noodle

Fox2 Now St. Louis - December 17, 2014

So, first I had to look up what a “pool noodle” is. Turns out it is a long, thick, semi-flexible “stick” made of squishy styrofoam, used as a toy or perhaps a sort of float by kids in swimming pools. Looking at pictures of “pool noodles”, I can see right away what the school staff were thinking. It’s long and semi-rigid, so it could, in theory, provide some of the sensory feedback of the canes used by blind people. At the same time, it is made of a material that can’t really hurt anyone, even if used as a deliberate weapon. I’d bet real money that there is at least one person at that school who really, honestly thought they had come up with a brilliant solution to a perceived disciplinary problem.

Of course, one suspects that the “problem” was either overblown or nonexistent. Dakota’s parents say it was all a misunderstanding … that the bus attendant might have seen him raise his cane and assumed it was to hit someone.

To me, this isn’t the issue. Dakota is still a young boy. It’s entirely possible that on occasion, he’s used his cane in questionable ways. It’s also possible he’s still learning how to control his cane, and not accidentally bump it into people or trip them up. The point to me is that the school should have a more thoughtful set of guidelines and procedures for how to deal with Dakota if he should misbehave, as most 8-year-olds misbehave from time to time. And a central tenet of any disciplinary plan should be to never take away an assistive device a child depends on for independence and mobility. This would apply to canes, crutches, a speech device, a wheelchair, or any other equipment that helps them with their particular disability.

It seems to me that part of the formula for kids like Dakota should be some sort of peer counseling “real talk” where someone he trusts … maybe a blind adult ... tells him, as a friend and ally, that assistive devices should never be used as weapons or to cause mischief. Teach disabled kids that they have an absolute right to their devices. They are not revokable privileges like a cell phone. But they also have a responsibility to use and look after their devices with great care. That seems like an essential bit of “growing up” that disabled kids, in particular, have to do. In a way, it’s part of learning self-advocacy.

As a side note, I found it kind of appalling that apparently, the cane was supplied by the school, which is one of the excuses the school used for taking it away. I suppose it’s good they provided the cane, if Dakota’s family can’t afford one, but also reminds me of all the ridiculous angst some school administrators go through over fears that school-provided assistive devices will be “misused” … including being taken home. Especially with something like a cane, whoever pays for it ought to just give it to the person who needs it, with no strings attached.

Update: Via @SFdireworlf, Dakota's school district apologized for taking his cane away. 1. I hope the district also agrees on a disciplinary policy that excludes confiscation of adaptive devices, and 2. I hope Dakota gets a cane of his own.

#JusticeForIssy

Changing Conversations: When Parents Murder Disabled Children

Shannon Des Roc, BlogHer - September 11, 2014

#JUSTICEFORISSY: STATEMENT BY AUTISM WOMEN’S NETWORK

Disability Visibility Project - September 15, 2014

Some more thoughts on sympathy for parents who murder disabled children:

- In general, I support discussing how systemic failures and economic injustice can partially explain some individual violent crimes, including murders and suicides. But it seems like the only widely accepted context for such discussions is with the murder of disabled children. Similar discussions involving other kinds of people and situations … such as gang violence and school shootings … are generally despised as excusing and coddling criminals. Somehow, though, killing disabled people is in some way "understandable". How can that be anything but galling and scary for people who have disabilities?

- We absolutely should talk more about the unacceptable delays and gaps in support services to parents of kids with disabilities ... but never in connection with the murder of disabled children. We cannot afford to undermine the idea that disabled children … even the most difficult and baffling … are sentient human beings.

- We shouldn't assume that parents who go off the deep end are always ill-served. Some fumble or even reject opportunities for support, out of confusion, exhaustion, or failure to recognize promising pathways when they appear. Some parents also find it hard to engage support because they feel it's a weakness to ask for help, or because they are terrified of being judged or losing parental authority. All of these can be legitimate concerns, but are never enough to justify, or even properly explain, murder.

- When we do discuss systemic failures, we also need to discuss the influence of well-funded, popular, but unhelpful, wrong, and destructive ideas about disability and child rearing that are regularly fed to parents who often don't even know there are other points of view. With autism, especially, parents urgently need to be told that no matter how mystifying their behavior and communication might be, autistic children are first and foremost people, not wild animals or tortured, miserable monsters.

- One reason why a note of sympathy keeps coming up in cases where parents murder their disabled children is that by and large, people find it easier to identify with frustrated parents at the end of their rope, than with children who have what seem like mysterious, frightening disabilities.

- To repeat … discussing the lack of support for parents is fine and necessary, but NOT IN CONNECTION WITH ACTUAL MURDER OR ATTEMPTED MURDER OF DISABLED CHILDREN OR ADULTS. It should be a taboo, indecent, simply not done.

Video Of The Day ... ASAN Speech

One of my favorite things about the Autistic Self-Advocacy Network is the way they speak about the rights, dignity, and experiences of autistic people within the context of a broader disability experience. In this speech, Ari speaks of the experiences and concerns of people with Blindness, Cerebral Palsy, Down Syndrome, and other disabilities as comparable with Autism, without ever actually making that specific point.

This is one of the best, most emotionally resonant, hard-hitting disability rights speeches I have ever heard.

Via the Autistic Self Advocacy Network Tumblr blog.

Disability And The Military

Rep. Mark Takano Introduces Legislation to Let Deaf and Hard of Hearing Serve in the Air Force

Press Release - July 30, 2014

Via @SFdirewolf.

I read an article last year about a young Israeli man with Cerebral Palsy who, though his own self-advocacy, was permitted to serve as an officer in the Israeli Defense Forces. In Israel, military service is compulsory for all but a few very specific groups, including people with significant disabilities. This young man may or may not have started a trend towards broader acceptance of disabled people into the Israeli military, but he certainly demonstrated what should be obvious … that in the modern military, there are plenty of duties that don’t require physical fitness, that disabled people are perfectly qualified to do.

That’s one reason why news of this House Bill caught my eye. Another is remembering a few months in my senior year in high school when I got some phone calls from branches of the military asking if I was interested in enlisting and pursuing certain career paths, based on my test scores. I had no desire to serve in the military, but it rankles just a little bit that the joke then was what a “mistake” they made, not realizing I was disabled.

And yet, I’m not sure exactly what the rules are in the U.S. military regarding disability and active service. As I also mentioned this Memorial Day, British fighter pilot Douglas Bader lost both legs before WWII. Initially, he was refused re-enlistment in the Royal Air Force, due to his disability, even though he had worked out adaptive techniques so he could fly again. Later, after start of the war and in the middle of the Blitz, he was allowed to re-enlist and fly as an active combat pilot.

Is there a difference between how the U.S. military regards serving with a disability acquired after passing Basic Training, and pre-existing disability? Can a soldier continue to service in some capacity after the onset of a disability?

If the military allows some service after a disability, how do they decide who can and who must be discharged? How much depends on the nature of the disability and how much on the nature of the work? Do they only allow non-combat work?

Any feedback from people more familiar with military rules and procedures would be greatly appreciated.

Guest Post at the Disability Visibility Project: The ADA - Three Disappointments, Three Victories

I am very excited to have a guest blog post on the Americans with Disabilities Act, at the Disability Visibility Project website.

Guest blog post: The Americans with Disabilities Act: Three Disappointments, Three Victories

by Andrew Pulrang

Big thanks to Alice Wong, of the Disability Visibility Project for inviting me! I highly recommend following her on Twitter: @SFdirewolf.

ADA 24th Anniversary

24 years ago today, President George H. W. Bush signed the Americans with Disabilities Act into law. Here are some videos to help you celebrate!

Two Bills To Fight For

The UN Convention on the Rights of Persons with Disabilities (CRPD):

I regret sounding overly pessimistic about the CRPD the other day. Andrea Shettle, who has been keeping the Internet up to date on the CRPD left a comment that basically encourages everyone to keep the pressure up, and remember all the legislative barriers the disability community has faced and overcome in the past.

Objections to the CRPD are, in fact, ridiculous. It’s mainly a tiny sub-group of voters who hold these beliefs about how it would affect U.S. sovereignty or home schooling. One reason they stick, though, is that the vast majority of Americans aren’t even aware that the CRPD exists. If more people knew what it was, and heard exactly what has kept it from being ratified, they would be disgusted. So, tell your friends! Bloggers, tell your readers!

Meanwhile, you can click here to contact your Senators … especially the ones who are “on the fence” at the moment, or who voted "no" in the past.

The ABLE Act:

I wrote about the ABLE Act for Shared Abilities a few months ago. The bill has been active again this week, so Shared Abilities’ CEO, Julie Steckel, reposted my piece on her Facebook page.

I also recommend reading this more recent article on the ABLE Act,l on the MSNBC website. 

The bill still seems to be promoted mostly as a solution for parents of disabled children, which it is … but that’s not all it is. It is worth remembering some key aspects of the ABLE Act:

- In addition to being tax-free, ABLE Act savings accounts would allow people with disabilities to set aside savings above $2,000, up to $100,000, without losing eligibility for benefits like SSI and Medicaid.

- Savings could only be used for disability-related goals, not everyday living expenses. However, these funds would be more flexible and less restricted than Special Needs Trusts or PASS Plans.

- The law would also allow self-directing adults with disabilities to set up and manage their own accounts, without needing a third-party trustee or manager. They could accept gifts from others to build their accounts, but also deposit some of the money they earn in jobs, which would then not be counted as monthly income, helping preserve benefits eligibility. This would help reduce work “disincentives” … the common situation where people with disabilities hold back on work and promotions because they can’t afford to lose key benefits.

The ABLE Act has broad, bipartisan support in Congress. It looks like it is on a path to being passed in the House and Senate in September. In a situation like that, the most valuable thing for advocates to do is to contact their Senators and Representatives and urge them to keep up the pace. The bill seems unlikely to face opposition, but even a popular bill can fade from apathy.

Call your members of Congress. Don’t let them forget about the ABLE Act!

More On The CRPD

Return of the GOP Dung Beetles

Anne Laurie, Balloon Juice - July 23, 2014

Here is a mainstream take on the UN Convention on the Rights of Persons with Disabilities. By mainstream I mean not from a disability advocacy group. It is, obviously, from a fairly liberal, Democratic blog. Still, liberal blogs don’t always quite get the point on disability issues, even when they're on the right side. This post doesn’t say much about the disability aspect, but it does, correctly I believe, identify the real problem, which has nothing whatever to do with disability, and everything to do with right-wing, “black helicopter” paranoia. I hate to be pessimistic, but how do you fight that?

ADA Anniversary

10 Things You May Not Know about the Americans with Disabilities Act (ADA)

Ability Chicago / Disability.gov - July 11, 2014

We are coming up on the 24th anniversary of the Americans with Disabilities Act. This Ability Chicago article includes a good summary of the ADA itself, as well as some related information on more recent disability developments and trends.

Meanwhile, I am working on a blog post on the ADA, to contribute to the Disability Visibility Project, a year-long initiative by StoryCorps, culminating next year with the 25th anniversary of the ADA. I think I'll cave to the listing trend, and try something like, "5 Best Things About the ADA", or "5 Ways the ADA Helped People with Disabilities." Maybe instead I'll go negative, and list some of the disappointments of the ADA.

I am interested to read what others think about the Americans with Disabilities Act. Do you think it has "worked"? How has it helped you? Do you think things would be a lot different if it had never passed? Share your thoughts in the comments.

Independence Checklist: Followup

I’ve already found another item to add to the Independence Checklist, inspired by a blog post by Smart Ass Cripple:

Do you get to decide who sees you naked?

Independence Checklist

Many years ago, I attended a disability conference where a speaker described a sort of checklist people with disabilities can use to figure out whether they are truly “independent”. The idea was that there are many disability service and support models that include certain “freedoms” and “choices” that feel like independence, but which can easily mask a fundamentally dependent situation. The speaker asserted that his checklist were indicators of genuine independence, not just superficial “privileges”. I can’t remember who the speaker was, or recall every item on his list.

The checklist that follows is my attempt to re-create and expand on the idea. Are you “living independently"?

- Do you have a lock for the door to the place you live, where only you or someone you choose have the key? Do people have to knock and ask permission to visit you?

- Are you responsible for your own finances, regardless of where the money comes from?

- Do you own your eating utensils, towels and washcloths, bedsheets and pillowcases?

- If you live with another person or people, are they people you chose to live with, and who chose to live with you?

- Do your helpers mostly work around your schedule, or are your routines mostly determined by your helpers’ schedules?

- If you did several things people disapproved of, would you risk losing services you need?

- Would you be permitted to eat Oreo cookies for dinner, if you wanted to? (I call this The Seinfeld Condition … after one of comedian Jerry Seinfeld’s famous bits).

- Would you be able to make a spur-of-the-moment trip to a local convenience store, if you got a sudden, intense, 3 AM craving for Beef Jerky?

- If you and another consenting adult wanted to have sex or get married, could you do so?

- Do you have more or less the same rights and responsibilities as non-disabled people your age?

- If some of your rights and responsibilities are controlled by other people, is that by your choice?

Notice that none of these items are about where you live, whether you have money and from where, whether or not you need or have everyday self-care help from others, or how physically or mentally capable you are. A quadriplegic can live independently. So, to some extent, can someone with significant intellectual disability. And, someone with fairly mild disabilities can just as easily live very dependently, their lives largely controlled and regulated by others.

What other items would you include on your “Independent Living Checklist”?