Why (Wheelchair Users) Can't Have Nice Things

Complaint: Commuter buses yanked disabled access for bar seating

Kristen V. Brown, San Francisco Chronicle - April 18, 2015

There are probably people who understand the value of accessibility, but don't realize just how galling this particular story is for wheelchair users. It’s annoying enough when a new business “forgets" to factor in accessibility, then begs forgiveness because they’re new, just starting out, struggling, whatever. But this is an intentionally high-end company that actually bought some wheelchair accessible buses, then intentionally removed the accessibility features. I don’t think they did so because they didn’t want wheelchair users to ride their buses. I suspect it really was all about space. Where else were they supposed to put those juice bars?

I think there’s also some unconscious ableism at work here. Underneath whatever legal calculations the company might have made, gambling on their interpretation of the ADA, I’ll bet there were at least a few thoughts along the lines of: “How many wheelchair users are going to want to take an expensive, luxury bus to work anyway?” Because disabled people don't get cool, high-salary jobs, and we don’t really care about nice things, even if they do reek a bit of embarrassing hipsterism.

Of course, it’s also entirely possible that at least one person at the company thought, maybe for a few seconds: “Wheelchairs take up too much space anyway …” Seriously, don’t you think that thought went through somebody’s mind, even if they never put it into words?

I usually don’t wish failure on startup businesses. However, I hope for the sake of precedent that what the company did is found to be an ADA violation, and that this sets off a chain reaction leading the whole enterprise to go bust. I’m sure the resulting damage to the Bay Area economy will be quite … limited.

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Newbie FAQs: Accessibility

Why are so many buildings still not handicap accessible? Isn’t that against the law?

This is a very good question!

Most US states* have building codes that include standards for accessibility, including:

- Minimum width for exterior and interior doors

- Measurements for building safe, usable ramps

- Proper height and placement of toilets, sinks, stalls, etc. in public restrooms

- Proper height of tables and service counters

- Minimum width of aisles and pathways inside buildings

Most accessibility standards are designed to make spaces accessible to people using wheelchairs. However, there are also provisions for people using other mobility aids, like crutches and walkers, blind people, and deaf people. The idea is that the default design of all public spaces should be usable by the maximum number of people, including those with disabilities. By building in accessibility as a standard practice, there is less need for more expensive retro-fitting and / or inadequate second or third choice ways of providing service to disabled people.

Accessibility standards are part of building codes, alongside structural standards, fire safety, and all the other basic standards for construction we generally take for granted. They are not options. They are as binding as any other component of building codes.

In addition to state codes, there are the ADA Standards for Accessible Design, which are designed to ensure that accessibility standards have some uniformity everywhere in the United States. By and large, if you design accessibility features according to these standards, you will be in good shape.

So, why are so many buildings still inaccessible?

First of all, accessibility standards have the most effect on brand-new buildings, and to a somewhat lesser extent renovations of existing buildings. They have much less power to force specific accessibility improvements in existing buildings not undergoing any other renovations. That said, under the ADA, businesses are required to make any needed accessibility improvements that are “readily achievable” … that is, feasible and inexpensive. This helps, but it leaves a lot of room for interpretation as to what any given business must do in their particular situation.

Second, failing to comply with accessibility standards isn’t “illegal” in the same way that speeding and robbery are. For the most part, accessibility is enforced through complaints, lawsuits, and, in really egregious cases, intervention by government agencies like state human rights commissions or the US Justice Department. You can’t call your local police to ticket an inaccessible bookstore, and even building inspectors vary widely in how much priority they put on enforcing accessibility standards.

Third, it is, in fact, usually harder and more expensive to make older and older-style buildings accessible than it is to build in accessibility form the ground up. “Old downtown” buildings from the 19th and early 20th centuries generally have narrower doorways, steps at entrances, and less roomy interiors than are standard in new buildings today. They also tend to sit on much smaller pieces of property, with less room for ramps and additions. Because these are “pre-existing” buildings, they are generally only improved when renovated, and then only marginally. Unfortunately, this means that older downtown areas are often less hospitable to disabled people than newer buildings out in the suburban “sprawl”. Yet, many lower-income disabled people live downtown, and don’t have cars or good transportation to get to the more accessible supermarkets and strip malls.

Finally, there is another factor that is powerful, but harder to quantify and define … apathy. Accessibility is still so low on peoples’ list of priorities for social and civic change that it rarely gets much attention at all. There are still business owners and managers who claim, often quite honestly, to not understand their obligations under the ADA, almost 25 years after the law was first passed. Whether this lack of profile is because people don’t care, because they are ignorant of what they can do to improve, or because disabled people aren’t organized enough in their advocacy … it’s hard to say. It’s probably a combination of all three.

There are many strategies we can all use to make accessibility a higher priority. Personally, I think the greatest long term potential lies in consumer recording of accessibility features, and lack thereof, using web-based mapping and business rating sites like AXS Map and AbleRoad. Businesses with poor accessibility need to know that they lose customers as long as they fail to act. That includes not just disabled people themselves, but also, hopefully, their families and friends.

One way or another, more of us have to speak up when we see barriers that shouldn't be there.

* Many, if not most countries also have similar accessibility standards applied locally or nationally … also with varying levels of thoroughness.

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It's Just Creepy

Disabled Toronto comedian catches strangers' shocking comments on tape

Josh Dehaas, CTV Toronto - November 8, 2014

It's an interesting comparison I kind of wish I'd thought of ... catcalling or "street harassment" of women, and the staring, gaping, and weird comments disabled people get out in public.

I suspect that both stem from roughly the same thing ... the unregulated impulse to look at a person who "stands out” somehow and blurt out a variation on, "Wow, look at that!" I chose those words deliberately. I think that when this happens, to women and to disabled people, we are not hes or shes, we are THATS. We are pieces of scenery, curiosities. That's what makes it galling.

One key difference is that in catcalling, the man usually wants the woman to hear, while most people who are rude to disabled people in public spaces try to hide it. No matter. It feels shitty either way.

To be clear, it doesn't matter what people say. The problem is the presumption by total strangers that it's okay engage with us in a way they wouldn't with other strangers. It's much the same with men catcalling women. "Smile, honey!" is friendly on paper. In person, tossed at you by a total stranger, it's creepy at best. So is, "Hey, little man!" from someone you've never met or even seen before.

(Via Girl With The Cane’s Facebook Page)

Blogging Note ...

I am working on some kind of blog post about that recent case in the United Kingdom where a judge ruled that a mother had the right to order a stop to care and feeding for her disabled daughter in a hospital, leading to the girl's death. She wasn't "brain dead", and she wasn't on mechanical life support. She died because the hospital, at her mother's request, backed up by a judge, stopped giving her food and water.

As I say, I am working on a blog post about this, but right now I'm having trouble being coherent about it. So, it will just have to wait. Maybe tomorrow.

More Advice For Businesses

How To Fix Your Service Experience For Customers With Disabilities -- What Kanye Should Have Learned

Micah Solomon, Forbes - September 14, 2014

Newspaper and magazine articles offering tips on serving customers with disabilities are pretty common, and usually quite bland. Maybe that is because providing good service and equal access to disabled customers is really pretty simple. Still, I liked this article more than most of the genre. I also really appreciated how Mr. Solomon connects with the Kanye West story … something lots of people have heard about, but who may not go beyond a surface-level outrage. Since Kanye is nothing if not a businessman, what he did should be understood as bad business as well as poor social awareness.

I’ve got a few pieces of advice for businesses, too. Again, none of it is particularly new or innovative. The problem isn’t that nobody knows how to serve people with disabilities. The problem is the lack of follow-through.

Here are my ideas:

1. Put accessibility on all of your “To Do Lists". I say “all” of your To Do Lists, not just one special To Do List, because you need to consider physical accessibility and individual accommodation strategies for all of your functions and events, and re-evaluate constantly. And you have to add us to your lists, because history has shown that for some reason, disabled people are among the most easily and frequently forgotten constituencies.

2. Tell employees it’s okay for them to break some rules and procedures if it will allow them to help a disabled customer. Good policies are no good if they aren’t implemented, and that’s done by employees, rarely by one boss. Don’t try to create a plan for every contingency. Instead empower your employees to be responsive to what each customer needs, including those who have disabilities.

3. If your business’ image is “retro”, “vintage”, “quirky”, or “hipster”, make sure it isn’t also “inaccessible”. Charming little businesses housed in 150 year old business districts are trendy and feel progressive, but they are often far less accessible to disabled people than the dreaded “big box” stores out in suburbia. Old-fashioned front stoops and a narrow little doors with cute brass knobs may be are like “disabled customers not wanted” signs. Some businesses may not have much of a choice of locations, but if you do, and if you’re putting money into decor, think about investing in accessibility. And then do it.

#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.

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.

Photo Of The Day ... And A Disability Role Model

The Crippled Suffragette: Rosa May Billinghurst

Bisexualfandom - May 27, 2014

(Via the Just Rollin On Tumblr blog).

"Billinghurst’s ‘invalid tricycle’ gave her the mobility she needed to become an active member of the suffrage movement. Her ‘invalid tricycle’ was a makeshift wheelchair consisting of a modified tricycle with hand controls. Billinghurst attracted public attention by appearing in processions dressed in white and wheeling along with her machine decked out in colored WSPU ribbons and “Votes for Women” banners. Billinghurst rose to prominence as a recognizable public figure and became known as “the cripple suffragette.”"

Why oh why have I not heard of this woman before!

Job Discrimination: Still Looking For Feedback

I haven’t had any responses yet to my questions about employment discrimination. There are three reasons I am asking for feedback on this:

1. I am helping my local Center for Independent Living develop some classes for disabled people looking for work, and one of the topics we want to deal with is disability-based employment discrimination.

2. I am looking for work myself, and in my previous work experience, disability was actually a plus, not a problem. So I am personally curious about what real-life disability discrimination looks like in the job-seeking arena.

3. I think we in the disability community mention job discrimination a lot, often without being specific about it. It is annoying when non-disabled people say, “But what about the ADA? Isn’t it against the law for employers to discriminate?” It’s annoying because it sounds naive, but the question remains, how and why does disability discrimination still operate, and is there any practical, immediate way to combat it?

So please, dive in! Any comments on these and related questions would be helpful.

Questions About Employment Discrimination

I’m working on grant writing today, so how about another question for feedback?

How would you describe the most common ways that disability discrimination hinders employment for disabled people? Do employers simply want to avoid perceived hassles? Are they worried about specific perceived problems with disabled employees? Do disabled applicants and employees sabotage ourselves without realizing it? Do laws like the Americans with Disabilities Act help?

Please be as specific as you can. It’s easy to cite “discrimination”, but how, specifically, does it play out in real-life? Do you have any specific ideas on how to make the employment situation better for disabled people?

Later this week I will collect comments and write a more complete post on employment discrimination.

Training For Police

Md. Police to Get Training About Disabled People

David Dishneau, Associated Press - May 22, 2014

This seems like a good idea, especially the part about training being partly conducted by people with intellectual and / or developmental disabilities. Personally, I would like to see it folded in with training about other disabilities, like deafness (people who may not respond as expected to voice commands), and conditions like Cerebral Palsy where people can be mistaken as drunk or drugged, or assumed to be intellectually disabled. But this is a step in the right direction.

One question still nags me about the Ethan Saylor case. What role did Mr. Saylor’s care aide play? In some of the stories about the incident, it sounded like his aide … an employee of a disability agency paid to help Mr. Saylor in the community … tried to de-escalate the situation and explain to the security guards how best to deal with Saylor’s emotional outbursts. I still wonder whether the guards just dismissed her input, and if so, why. Aides like this don’t wear professional costumes like doctors or nurses. They aren’t always hyper-articulate, authoritative people with Ph.Ds. And they are disproportionately young women. Did they just not take her seriously?

Not that I want things to go too far in the other direction … where nobody listens to the disabled person and automatically looks for an aide to talk to instead. But in a crisis, if there is paid aide, a close friend, or a relative present, they should have a voice and that voice should be heeded as much as possible.

Doctors ... Just Relax!

Doctors' Ignorance Stands In The Way Of Care For The Disabled

Leana Wen, National Public Radio - May 17, 2014

"More than half of medical school deans report that their students aren't competent to treat people with disabilities, and a similar percentage of graduates agree. Accreditation and licensing boards don't require clinicians to demonstrate knowledge or skills in treating patients with disabilities.”

So disabled people get measurably worse medical care because caring for us properly is too hard?

This reminds me of a circular argument we sometimes hear in public education. Classroom teachers often say that they shouldn’t be teaching significantly disabled students because they aren’t properly trained, like Special Ed. teachers are. Their belief is self-fulfilling. When a teacher decides that teaching disabled students it is beyond them, then they will, in fact, do a pretty poor job.

I think it’s the same with doctors. An ER doctor doesn’t have to know all about every disability to treat a disabled patient well. What they need, I think, is a little more confidence, an open mind, and really good listening skills.

The doctors cited in the article don’t believe they are “competent” to treat disabled patients. I would agree that many of them are insensitive and fearful of disabled people, but I don’t accept that broadly speaking they are incompetent. We are people, not internal combustion engines or integrated circuit boards. What doctors need is to realize how similar we are to other patients, not how different. They should be more confident, and not shy away from us just because we aren’t the norm.

The problem is that these doctors do end up treating us anyway especially in settings like the ER; someone’s got to. And when they do, as often as not, they are awkward, rushed, and unresponsive. They can do better, but because they don’t think they can, they don’t.

A bit more training in medical schools might help, but I don’t think it would take much. Instead of a whole course, what doctors need to hear is: “Relax! You are a fully qualified physician. Just do you thing, listen to your patient, and quit trying to pass the buck.

"American Girl" Doll Petition Still Needs Signatures

I first saw Melissa Shang's Change.org petition to add a disabled “American Girl” doll back in late December. I checked in again in January, at which point the petition needed 26,000 more signatures to reach its goal. As of today, it still needs about 7,300 more.

As far as I can tell, Mattel, the “American Girl” brand’s manufacturer hasn’t committed to adding a disabled doll to its collection, although a spokesperson praised Melissa’s efforts.

I’m sure they get tons of very specific requests, since the whole point of the “American Girl” collection is to represent American girls of all kinds, from all walks of life. For that same reason, though, I don’t understand why they haven’t been more decisive about it. Maybe when Melissa’s petition reaches its 150,000 signature goal they’ll use the occasion to make an announcement.

Click here to sign the petition!

Best Article On Inclusion

"Our School Doesn't Offer Inclusion" and Other Legal Blunders

Paula Kluth, Richard A. Villa and Jacqueline S. Thousand - ASCD - December 2001 - January 2002

This article was linked in a Tweet from the excellent Think Inclusive website. It is the best article I have ever read on the basics of Inclusion … both the legal requirements and the educational philosophy. Note that it was written almost 14 years ago, but it feels like it could have been written today. Why are we still “debating” this? I also noticed that in the article, parents are assumed to want inclusive education for their kids with disabilities. Yet, it seems like there are still a lot of parents who are as unfamiliar with and confused about inclusion as many teachers and administrators.

The central misconception about inclusion seems to be that it means that all disabled students will be pushed to "keep up" academically with the nondisabled students, which is NOT the point. Some disabled kids probably do need the bar raised higher, but that is a different issue. Inclusion is about equal integration and participation, not necessarily equal performance.

Read the whole article … it’s very good!

Prom Thoughts And Regrets

Paralyzed Hockey Player Takes ESPN Host To Prom, Pretty Much Ensures He's Too Cool For School

Huffpost Good News - April 29, 2014

Here we go with another disability-related prom story, with some similarities and key differences from the story I commented on yesterday. I guess prom and disability is a potentially rich vein for melodrama, uplift, and regret.

I never attended the prom. I slightly regret it now, mostly because I know part of the reason I didn’t was that I just assumed the whole scene wasn’t “for me”, because of my disabilities. However, thinking back to the way I looked at things then, I can’t imagine actually putting myself through the traditional Prom routine. I can definitely picture going if attending solo to hang out with friends had been a socially recognized option, but as far as I knew at the time, it wasn’t. I certainly can’t picture going the tux, limo, corsage route, unless maybe me and a girl had decided to do it as a semi-goof. The whole traditional “formal” dating scene was something that I was excluded / excluded myself from, partly because of my disability and piss-poor body image, but absolutely partly because I didn’t buy into that scene anyway. If I’m honest with myself, it’s hard to pinpoint where one part of my attitude ended and the other began.

This is a good example of why it's ridiculous to talk about our disabilities and our “true” selves being separate, or whether we would jump at a cure if one was available. I can’t really separate my viewpoint on high school social life from my identity as a disabled person. My disabilities didn't fully determine my outlook, but they heavily influenced it.

Would I have gladly become a high school jock or Prom King candidate if I hadn’t had disabilities? Did I turn out nerdy, intellectual, and bookish because those are all mental pursuits, where physical strength and stamina don’t matter? I have no idea. I might as well wonder what I'd be like if I had grown up in Soviet Russia, or had been born in 15th Century Venice. In that sense, my disabilities and I are inseparable.

I do know that there are quite a few things I might have enjoyed that I avoided trying because they seemed like too much hassle, as I saw because of my disabilities. I'm not sure if the prom is one of them, but there are definitely things I regret not trying because of my disabilities. Maybe some other time I will make a list.

Someone could write an interesting Disability Studies thesis on students with disabilities and the traditional American high school prom. I wonder if anyone has done a comprehensive study of different high schools’ policies and practices around proms and other dances, and whether any of them consciously try to be more inclusive of students with disabilities. I would also love to see a survey of “human interest” news stories about disabled kids attending the prom.

If you have any disability-related Prom experiences or thoughts, please share them!

Questions Not Asked

I am feeling a little better now, so let’s give this a shot ...

Tooele teen with disability enjoys a prom night to remember

Nineveh Dinha, Fox 13 Salt Lake City - April 25, 2014

First of all, credit where it’s due … Fox 13 included an actual quote from Kaidn Shield. We heard a little bit of what the disabled guy in the story is actually thinking. Granted, it wasn’t so much an evaluation or personal opinion on the subject … it was more of a factual report on what he expects to happen at the Prom. That’s still a lot better than the heartwarming disability stories where the disabled person is a voiceless object.

Unfortunately, I’m not sure there’s any way to cover a story like this without it coming off as condescending. I think what’s really missing here is some acknowledgement that there are bigger issues involved.

- Why, exactly, is Kaidn often “left out” of school activities? His mother says that his disabilities prevent him from participating, but he doesn’t appear to have any significant physical impairments, so is it social stigma that’s really at issue? Taylor Roberts is planning on studying Special Education and disability work … what is her theory? What would she do to improve disabled kids' overall inclusion in schools?

- Have Taylor and Kaidn known each other for a long time? What do Taylor’s friends think of what she’s doing? Has anyone made any snotty remarks or questioning of her motives, and if so, how would she reply?

- Does the school create any barriers, even inadvertently? For instance, do students have to have a date to come to Prom, or can they come solo and just have fun with their friends? That might take some of the social pressure off for all sorts of kids who for various reasons aren’t ready to “couple up”.

I suppose the reporter might have asked these or other substantive question, but there wasn’t time to fit them into the segment. It would be nice maybe to get a followup story that focused on the social forces that affect kids like this everywhere.

Best Article On Sub-Minimum Wage

When Should Disabled People Be Paid Less Than Minimum Wage? Curtis Decker Says Never

Angelo Young, International Business Times - March 11, 2014

This is the best article I have ever read explaining the issue of sheltered workshops and the 14(c) certificates, which employers to pay certain disabled people less than minimum wage. In addition to underscoring what’s wrong with the practice, the man interviewed, Curtis Decker, does a great job of explaining why anyone still supports this. Here is an excerpt:

"IBTIMES: What do families think of their disabled relatives working in an environment where the employer determines the minimum wage in accordance to the Section 14(c) rules?

DECKER: Some want their disabled relatives integrated [working in a non-segregated environment for a private employer] and making at least minimum wage. But you have others who say, “Listen, leave it alone. It’s OK. She gets her social security check. She makes a little extra money. She gets out of the house every day. She’s not sitting at home watching television. I can go to work and this is a place she can go to. And you come along and want to disrupt this thing, you’re going to make my life miserable.”

IBTIMES: How do you answer that?

DECKER: I have to tell them that this isn’t about them. Our job is to represent the person with the disability. You can go into a sheltered workshop any day of the week and go up to workers and find someone saying they like the job, and that their friends are there. Like anybody else, you’ve been doing the same job for 10 or 15 years. You can’t make an informed decision if you haven’t experienced anything else. We would have the same issue when going into institutions – you find people who are asking you to get them out of there, and others who don’t know what the alternative is, or where you want to take them, or whether they’ll be separated from their friends if they get out."

I have just a couple of quibbles about the article.

Decker correctly points out that the biggest users and defenders of the 14(c) program are other disability-repeated non-profits. However, he fails to distinguish between old-line, paternalistic oriented service agencies and the more advocacy oriented, modern, consumer-driven disability organizations that don’t use the program or anything like it, and are fighting hard against it. That includes the National Council on Independent living and the hundreds of local Centers for Independent Living around the U.S., the Autistic Self-Advocacy Network, the National Federation for the Blind, and the National Council on Disability. In fact, whether an organization supports or opposes sheltered workshops and the 14(c) certificates program is a good way to tell what kind of disability organization you are looking at.

I also think it is important in articles like this to remind readers that this isn’t about a handful of large corporations. There are similar sheltered workshop programs in large, medium, and small communities all over the country. One way to start working on this issue is check to see if your local disability agencies use the practice, or if they oppose it.

Other than that, I’d say this is essential reading for anyone with an interest in disability issues.

Join The Vigil

I am about to sign on to the virtual part of the vigils to remember disabled victims of filicide–disabled people murdered by their family members or caregivers.

You can log in anytime between 3:00 and 9:00 PM Eastern Time today (March 1, 2014), by clicking the photo below.

Addendum:

According to the Autistic Self Advocacy Network, live, in-person vigils are being held today in the following cities:

Sacramento, CA

San Francisco Bay Area, CA

Fort Myers, FL

Atlanta, GA

Chicago, IL

Boston, MA

Baltimore, MD

Towson, MD

Houghton, MI

Missoula, MT

Robbinsville, NC

Lincoln, NE

Woodbridge, NJ

Reno, NV

New City, NY

New York City, NY

Rochester, NY

Syracuse, NY

Eugene, OR

Portland, OR

Pittsburgh, PA

Seattle, WA

Washington, DC

Halifax, Nova Scotia

Another Addendum:

Yet Another Disabled Child Killed By Family
S. E. Smith, xojane.com - June 19, 2013

Here is an excellent, hard to read, but important article that provides very specific context to this vigil. Please read it, especially if you are not sure what this Vigil / Day Of Mourning is all about. Thanks to Tumblr bloggers Wheeliewifee and Sunshine, Been Keeping Me Up For Days who posted and reflagged this.

Thank You Gail Collins

The Least We Can Do

Gail Collins, The New York Times - February 19, 2014

It's rare for well-known, "mainstream" Op-Ed columnists to write about disability issues. It's even rarer that they get it completely right. That's partly why I was so pleased to find a link to this Gail Collins column about the UN Convention on the Rights of Persons with Disabilities (CRPD), on Andrea Shettle's Tumblr blog.

I especially like that Collins gets specific about what has so far kept the United States Senate from ratifying this convention. It isn’t about the generic “Do Nothing Congress” theme, although it is a variation of it. It has little to do with what is in the convention and what it would actually do. Rather, it has become another test vote for Republican Senators at risk of being "primaried" in the upcoming election by candidates more right-wing and / or paranoid than they are.

The two main "issues" with the convention itself are, as Collins correctly notes, about sovereignty, and parental rights. Or, to put it more plainly:

1. Certain very conservative Republicans have a long-standing distrust of the United Nations, which by its very nature they envision one day imposing laws and changes on the United States. This disability rights convention is to them just another potential wedge for foreigners to meddle in our business, so they want Senators, especially Republican Senators, to vote against it on anti-UN principle.

2. Certain other (sometimes the same) very conservative and Evangelical Christian Republicans are afraid that a particular phrase in the convention opens the door for the UN to overrule what parents choose to do with their children with disabilities. It seems like one specific thing they worry about is that the UN will someday determine that homeschooling is bad for disabled children, and somehow use that to curtail homeschooling in the United States.

The first objection is just the latest version of a sort of "constitutional" objection that is as old as the UN itself. People of a certain political bent have never liked the United Nations, and distrust the notion of “international law” on principle. They are nationalists who believe that the United States should never in any way acknowledge any authority higher than our own Constitution … even symbolically or for practical reasons like diplomatic cooperation and world peace.

The second issue is a little more complex, but only a little. Homeschoolers, especially, (but not exclusively) Evangelical Christian homeschoolers, feel looked down upon and threatened by the education “establishment”. While some homeschool because they don’t like aspects of public education as it is practiced, others basically don’t like the idea of any “so-called experts” telling them how to raise and teach their kids. Since public schools generally don’t see it as part of their mission to inculcate religious values in children, some Evangelicals opt to take their kids out of the “system” entirely and teach them at home, something that United States law does allow them to do. A somewhat side group of parents have a different problem with schools. Since schools still often do a poor job of handling disabled children, some parents decide to give up trying to improve Special Ed through advocacy, and simply decide to go it alone with their kids, believing that they, the parents, know what’s best for for disabled children.

So, you have two groups of homeschooling parents, groups that only partially overlap, who hear government-type agencies talk about “the best interests of the child” and take it to mean that if some academics and politicians don’t like how they raise their kids, then the law will eventually force them to give up their authority over their children and subject them to an education system they don’t agree with and even fear. They see an international agreement like the CRPD as a stealth way to someday circumvent US laws that so far at least do protect “parents rights”.

Of course, the purpose of the CRPD isn’t to change how the United States deals with disability issues, but to bring other countries closer to how American law currently does. There’s no point in beating around the bush here; we’re talking quite often about Third World countries, and possibly Eastern European countries … which often have cultures with pretty outrageous notions about disability, and / or infrastructures where accessibility is unheard of. And even if down the line, someone were to try and bend the CRPD to make legal changes in US law, it is vanishingly unlikely to ever happen under our current relationship with the United Nations. The US has veto power in at the UN. The only thing we have ever done at the behest of the UN is go to war, and then usually because we got the UN to vote for military action in the first place.

Opposing the CRPD on these ground is high-level jumping at shadows. It is also an insult to the many Republican Senators who aren’t big UN fans, but see this convention as something worth doing. Worst of all, it has caused the United States to symbolically disavow one of the few areas in which we truly are more advanced than much of the rest of the world.

The other problem is that the stakes are so low, in a political sense. It’s just not a big enough deal to get anyone upset in favor of passing the ratification. That’s why someone like Gail Collins writing about it, and well, is so important.

Disability Rights In Russia

I saw this photo earlier this week, on the Disabled People Are Sexy Tumblr blog, and traced it to a Human Right Watch website on the disability rights movement in Russia. I set the photo aside and added the Human Rights Watch links to my link queue to read later.

I’ve been thinking a bit about the perception of Russia, prompted mostly by the Winter Olympics in Sochi, but also by Russia’s recently passed anti-gay laws, and more broadly, by the sort of back and forth confusion in Americans’ attitudes towards Russia I have seen since the end of the Cold War and the dissolution of the Soviet Union.

For one thing, people on opposite sides of the political spectrum in the U.S. have almost swapped sides in regard to Russia. American Conservatives spent the latter years of the Cold War trying to convince Liberals that Russia was the worst country in the world. Not only did they espouse the hated ideology of Communism, but as a people they were supposedly ugly, brutal, and backward. “All they respect is power!” we were told. Liberals, on the other hand, tended to try and reach out to Russia, to appreciate their history and literature, to put the Communist Revolution in historical context. We almost took the human rights problem for granted ... if not quite forgiven, then maybe a little excused.

Now, with Communism gone, some Conservatives seem to have a crush on Russia's current strongman, Vladimir Putin … he’s kind of a bad-ass, I guess. I, a Liberal watch Cossack policemen beating and whipping the brave but obviously unthreatening young women of Pussy Riot and really wonder, in a different way than Sting did in the ‘80s, whether, in fact “the Russians love their children too?”

All of which is just to say that I approached the topic of disability rights in Russia with all kinds of conflicting feelings, not all of them noble or fair. In short, I expected horror stories and ignorance in triple doses. What I’ve seen so far is more complicated.

With about half of the problems mentioned in the article, video, and website linked below … such as "Public buildings and transportation are often inaccessible” ... I thought, “That’s not so different from here in the U.S!” The other half, I thought, “Okay, that’s pretty bad. I don’t think that happens here … much.” We still see segregation into “special” classes in our schools, but a lot more than 2% of them are inclusive, mixing disabled and non-disabled students. And although peoples’ feelings and ideas about sexuality and reproduction can still be frighteningly discriminatory in the U.S., enforced abortion and sterilization are no longer considered anything like acceptable.

Still, the basic landscape and map of issues is pretty much the same in Russia as it is here. They need more buildings and public spaces to be accessible. Education needs to improve. People have negative attitudes towards people with disabilities that result in sometimes shocking acts of discrimination. It all sounds familiar. It’s just that it also sounds like Russia is maybe 20 to 30 years behind us on most things. That’s pretty awful for disabled people in Russia, but I’m not sure it’s boycott-worthy, or justifies any feeling of great American superiority on disability rights.

Except there’s one thing Russia has going for it that we don’t. Russia has signed the UN Convention on the Rights of Persons with Disabilities, and the United States hasn’t.

I have occasionally wondered whether the CRPD really matters anyway, since there is little anyone can do to enforce it in countries that sign it. It might be a cheap way for countries to score “credit” for being progressive on disability rights, without actually having to do anything about them. Having read more about the movement in Russia, however, I think the CRPD provides a valuable tool to compare words with deeds in a country that, leftover Cold War prejudices aside, does seem to have a problem following through on all the details of being part of the modern, democratic, egalitarian world. The CRPD provides a standard for Russia to meet. And, after all, unlike the pronouncements of the U.S. State Department, the UN Convention is something Russia chose to sign, so it will be hard for them to claim that disability rights measures are foreign impositions, incompatible with Russian culture and traditions.

I look forward to learning more about disability rights in Russia, a subject which should really be about people with disabilities in Russia, not about which country can claim moral superiority on disability rights issues. Maybe we’ll learn more when the Winter Paralympic Games start in March.

Human Rights Watch - Breaking Barriers: The Disability Rights Movement in Russia

Breaking Barriers: The Disability Rights Movement in Russia

Tanya Lokshina, Human Rights Watch - August 24, 2012