Why (Wheelchair Users) Can't Have Nice Things

Black line drawing image of a bus
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.


Newbie FAQs: Accessibility

FAQs spelled out in 3-D blue letters with a computer mouse in front
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.

It's Just Creepy

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.

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

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.


Illustration of stacked newspapers
Shannon Des Roc, BlogHer - September 11, 2014

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 ...

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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

black and white photograph of Rosa May Billinghurst sitting in her adapted wheelchair after being arrested, surrounded by police officers and members of Women’s Social and Political Union
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

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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

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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.