Thursday, October 8, 2015

Grace Period

Two three-dimensional stick figures, one with an empty word balloon the other with a question mark
How much time do you allow for people to catch up with new developments in disability language and ideas?

When I started out working in Independent Living, "crippled" was inexcusably insulting, unless used in a joking, in-group way among disabled people. "Handicapped" was just barely out date, but still very common; our general approach was to correct it kindly and patiently. "Person with a disability" was the ideal, and using it marked you as someone with a strong, progressive disability consciousness.

Today, 25 or so years later, hearing "handicapped" hurts to hear, and marks a person as hopelessly out of date. "Person with a disability" is in rough parity with "disabled person," but terminology is evolving fast towards "disabled person." Person First Language is in roughly the same position today that "handicapped" was 25 years ago. Some people honestly see it as an improvement over what came before, while others have left it behind. Advocates for Identity First Language give strong, passionate arguments in its favor, but say that they respect disabled people who still prefer to call themselves "person with a disability."

I see the same kind thing in disability-related thinking and practices. 25 years ago, most everyone agreed that large institutions were terrible for disabled people, and all but a few forward-thinkers viewed group homes as a progressive alternative. Sheltered workshops were generally viewed positively in the wider community, and were only beginning to be seriously questioned.

Today, I would view anyone who thinks group homes and sheltered workshops are awesome as well behind the curve, though I'm not sure yet that we are at the place where belief in these models can be fairly called shameful. I guess it depends on who I am talking to ... a random person in the community or someone familiar with disability issues.

On the other hand, people still talk about accessibility standards and the ADA like they are new requirements, even though the ADA just turned 25 and the first accessibility standards were published in the late '60s. And "inclusion" in schools, or, as we used to call it, "mainstreaming," is still often debated as if we are still pondering a new approach, when it's been the standard goal for education since the early to mid '80s ... at least on paper. To me, it's long past time for literally everyone to be on board with these things.

I think 25 years makes a pretty good grace period. If your thinking and practices around disability are older than that, I don't have much sympathy. But if you're still a little behind by, say, 10 years, we can talk.

How long is your grace period for social change?


Tuesday, October 6, 2015

The Way Of The Advocate Is Hard

Green highlighter pen highlighting the word Advocacy
One of the reasons why strong, vocal disability advocates get more negative than positive response in social media ... such as when they criticize Inspiration Porn ... is that most people find strong, critical, negative opinions on any subject to be unattractive. Advocates can shape attitudes over time. They can bring about important policy change. A significant minority of people actually admire advocates and love what they do. But on just about any issue you can name, advocates and social critics who speak their minds are rarely liked.

This phenomenon is a bit more intense and hypocritical in the disability sphere because of the unique characteristics of ableism. But I don't think the backlash is much worse or all that different from the responses people get when they express challenging opinions on race, gender, politics, religion, economics, etc.

So what?

Well, it suggests that if you're going to be an advocate, especially in the realm of disability, don't be surprised if you catch a lot of crap for it. If you're very good at it, and articulate, you might gain a small but loyal fan base within the activist community. If you're smart about strategy and don't take things too personally, you can succeed in what you set out to do. But if you venture out into the wider public discourse, don't expect to be either liked or admired. Change is uncomfortable. Most people don't like to be uncomfortable. And people absolutely hate it when the people they think they are helping are the ones making them feel uncomfortable.


Monday, October 5, 2015

Weekly Reading List

Picture of a multicolored stack of books
For this week’s list, I picked 5 excellent pieces that I would describe as “Disability 101.” They don’t break any new ground or dig deep into disability culture, but together they would make a good introduction to modern disability life and thinking.

Elizabeth Cooney, The Boston Globe - October 5, 2015

This article covers just about all of the main concepts required to understand what “accessibility” is really about. It’s not just a bunch of obscure, nit-picky regulations. Each rule and each measurement standard related directly to how disabled people live, and have a direct affect on whether or not we can get around in our own neighborhoods, towns, and cities.

Karin Hitselberger, Claiming Crip - October 1, 2015

There are lots of disability etiquette lists out there, covering pretty much the same things. What makes this one notable is that Karin offers “dos” for each one of her “don’ts.” I think that’s something we forget to do much too often.

Emily Ladau, The Disability Dialog - October 2, 2015

Emily does two very important things here. She raises the very difficult and extremely important issue of what happens to disabled people in personal and public emergencies. In doing so, she also underscores the fact that disabled people, ourselves, are equally responsible for planning emergency response, or failing to do so.

Andrew English, The Telegraph - October 2, 2015

At first I didn’t quite understand what this woman does, but when I finally got it, I was fascinated. It seems there’s a program in the UK that gives disabled people some kind of allowance specifically for transportation. You can use the money to pay bus fares, subway rides, or a driver. Or, you can use the funds to help buy or modify a car to make it drivable. Obviously, the amount of the allowance is crucial, and I wonder if you can choose to save up the allowance for a bigger purchase. But the model sounds great because each person can decide how to use the funds in a way that works best for them.

Alexander Presthus, CP Experience - September 30, 2015

Boy, did I nod my head a lot while reading this! Even though Alex focuses on Cerebral Palsy, what he says here I think is totally valid for youth with all kinds of disabilities. Parents of disabled kids should read thing blog, too.


Sunday, October 4, 2015

Weekly Wrap-Up

Closeup illustration of a monthly calendar page
Last week in Disability Thinking ...

Monday, September 28
Wednesday, September 30
Thursday, October 1
Friday, October 2
Saturday, October 3


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Saturday, October 3, 2015


Closeup photo of the word "evolution" in a dictionary
I’m working on a bunch of things to post about for the next couple of weeks. In the meantime, here’s a terrific quote from Ari Ne’eman’s two-part article on the National Council on Disability’s research on Sheltered Workshops:
"Disability policy is full of examples of yesterday’s innovation becoming today’s indignation. As my friend Anne Donnellan once put it, “The mark of anyone good in disability service-provision is that they’re at least a little bit ashamed of what they were doing twenty years ago.” The opposite of this is also true – many of the worst disability services come from becoming too attached to program models that were considered state of the art in previous decades." -- Ari Ne’eman: (Almost) Everything You Need to Know About Sheltered Workshops: [Part 1] [Part 2]
I thought of this earlier this week during a great Twitter conversation I had about “Person First Language” and “Identity First Language” with @greggberatan, @erabrand, @mikeemort and a few others. I switched from PFL to IFL a couple of years ago. Until that time, my understanding was that Person First Language was THE progressive term to use, completely consistent with the Social Model of disability. Anything else, I assumed, was ableist, and any disabled person using IDL had to be misinformed.

As it turned out, I was the one who was misinformed. No, that’s not quite right. I was informed … 25 years ago. And while I am not “ashamed” of having used and encouraged Person First Language, I have no trouble now saying that my thinking has evolved, and so has the thinking of many smart, savvy, self-aware people in the disability community. People who prefer using Identity First Language know what they are doing.

Ideas about disability evolve. Cynical ableists aside, what we did before was the best we could figure out at that time. "People with disabilities" was a huge improvement over "handicapped," and we should have no regrets. However, we do need to take care not to be arrogant about our beliefs, or assume we are always the cuttting-edge thinkers, and remember that sometimes, people who disagree with us may have the better idea.


I won't try to explain the pros and cons of the two "identification models." I am not very good at parsing out the different justifications for each one. I will say that once I bought into Identity First Language, I did so enthusiastically, mainly because it's easier to say and write. "I'm disabled" just sounds smoother and less cumbersome than "I am a person with a disability."


Friday, October 2, 2015

Some Things Should Be Easy To Fix

Photo of a disability parking space, focused on the painted wheelchair symbol and lines
Amy Packman, Huffington Post UK - October 2, 2015

So much stupid ...

If we take this Geoff Pearson at his word, his whole objective is to get his council government to stop being sloppy with local codes, like how to mark a disability parking space properly. Now, he may be using this technicality as an excuse, but have a hunch that he isn’t. There’s someone like him buzzing around every municipality ... obsessively concerned with procedure, and sort of oblivious to practical outcomes and how they affect actual people.

Of course, none of this would be an issue at all if the local council would get its act together and repaint the parking space the proper way. Public officials don't like admitting mistakes though.

There’s not much you can say about the Wallaces. Not being able to park in that space clearly causes a problem for them. At first I didn’t understand how a school could have so little parking, but I live in a small US town where schools sit on extensive grounds and have dedicated parking lots. Edinburgh is a centuries-old city, where I guess at least some schools have only street parking.

I usually advocate dealing with these kinds of disability issues systematically, through official channels, formal complaints, and policy analysis. In this case, though, it seems like what’s missing is some basic human decency and one-on-one communication:
Mr. Wallace: “I know you have a beef with the council over that parking space, and I sort of agree with you. But could you just not park there? I really need the space so its easier to take my son to school."
Mr. Pearson: “Sure, okay. Sorry."
Or how about this:
Council Executive: "We won’t be taking up new parking issues until January …"
Mr. Wallace: “It’s just a mistake in how it was laid out and painted. Can’t you just fix it now?"
Council Executive: “Well, okay, I guess we can.”
Mr. Wallace: Ta!
Kind of a Kumbiaya scenario, but is it really all that unrealistic? We get so caught up in processes and making points that I think we sometimes pass up opportunities to just solve stuff like human beings.


Thursday, October 1, 2015

Throwback Thursday

Picture of the time machine from the movie The Time Machine
Two years ago: ADAPT Actions in DC.

It's amazing how patterns persist. ADAPT is protesting this very week in Utah, and over the last couple of weeks, we have read an excellent two-part explainer on sheltered workshops by Ari Ne'eman (Part 1, Part 2).


Wednesday, September 30, 2015

Questions About Inspiration Porn

Kelly May, Fox 45 - September 29, 2015

I am working on a definition of Inspiration Porn to beef up what's in Wikipedia, and maybe add to the Urban Dictionary. It's taking longer than I thought, so until I finish, here are a few questions:

1. How much of the problem with Inspiration Porn is its tone and message, and how much is about how the disabled subjects are included or excluded? Which is more of an issue, the content or the method?

I think we tend to assume that when disabled people are more fully involved in news stories and other media projects about disability, then the messages will be better because of their involvement. I'm not sure that's true. For instance, this article about a college student with Cerebral Palsy joining a sorority seems to have her full cooperation, yet it still feels like Inspiration Porn. If, as everyone in the story says, Lauren's inclusion isn't unusual or subject to any special circumstances, then why is it a news story?

2. Would this story be more newsworthy if the reporter had asked some more probing questions?

For instance, is Ms. Reder's admission to a sorority a first? Is it rare? Or, is it fairly routine at this university? If it's a first or very rare, why is that? If it's quite common, how does that compare with similar houses at other universities? How many disabled students participate in rush, compared with the non-disabled student population? Are certain kinds of houses more or less likely to include disabled students? How do these patterns and practices compare with other kinds of diversity?

Or, if they really wanted to make this a personal story, how about asking why Lauren wanted to join a sorority? Why this one and not another? Did she plan to rush, was she invited, or was it a spur-of-the-moment thing? Will she live in the house, and if so, is it accessible enough?

3. How did this actually become a news story? Did a reporter hear about it and decide it would make a great human interest story? Did the sorority's leadership initiate reach out to the TV station? Was Lauren an enthusiastic or reluctant participant? Does she have any concerns about how her story is being told and interpreted?

4. I am a bit confused about the role of news worthiness in identifying Inspiration Porn. We criticize stories and memes that suggest something a disabled person does is remarkable, because we rightly say that should be unremarkable. At what point do we stop noting a thing that is rarer than it should be, because calling attention to it somehow reinforces that rareness? Or, is this actually part of a different argument over whether to focus on individual moral qualities or on just and unjust policies and practices?

Basically, I'm trying to figure out whether Inspiration Porn ... which let's admit, we are all defining on the fly ... is a binary thing, or is it a blurry continuum? There seem to be a lot of borderline cases that may or may not be fairly termed Inspiration Porn, and since it's a pretty harsh criticism, I feel like maybe we should firm up our definition a little.

More to come ...


Monday, September 28, 2015

Weekly Reading List

Picture of a stack of multicolored books
Elizabeth Picciuto, The Daily Beast - September 23, 2015

Ari Ne’eman, Sometimes A Lion - September 20 & 26, 2015

Kathleen McLaughlin, SF Gate - September 26, 2015

Sophie Quinton, The Pew Charitable Trusts / Stateline - September 17, 2015

All 5 articles deal with employment of disabled people, in particular, the increasingly outdated practice of routing them into lesser, lower-paid, “sheltered” employment. This is a foundational issue for the disability rights movement. It’s also a sort of litmus test for service providers and others who want to be our allies. Are they willing to recognize that yesterday’s way of doing things … though maybe the best we could do at the time … may not be acceptable anymore? Can they turn their back on familiar ideas and assumptions, and embrace a new outlook? It’s not as easy as it sounds in a blog post, but it is essential.

Plus, as Ari Ne’eman points out, disabled people, too, need to take a leap now and then, and we don’t always step up and do it right away.


Sunday, September 27, 2015

Saturday, September 26, 2015

Accessibility Rating: Into The Weeds

AXS Map logo
September 26 - December 31, 2015

It is entirely possible do go out and do credible, informative accessibility ratings without having the complete ADA Accessibility Guidelines tattooed on your brain. You don’t need to know everything. You don’t have to take a hundred measurements at every place you visit, either. 

It is, however, important to understand the fundamentals of accessibility in the United States in 2015. You can’t really get a proper grip on advocating accessibility without understanding:

a. What the law actually says about accessibility, and

b. What “accessible” actually means.

Which buildings are required to be accessible?

First of all, it’s not so much “buildings” as businesses that own and operate buildings or portions of buildings. Which businesses are required to have physical facilities for the public that are accessible?

- If it was built before 1992, it’s required to fix any accessibility problems to the extent it is “readily achievable.” That’s a very loose standard, open to a lot of interpretation and pleading, but it does open the door for advocacy and some basic improvements. There is no “grandfather clause” in the ADA for anyone.

- If it was built after 1992, it must be fully accessible. Full stop.

- If it was renovated, all or in part, or added to, the worked on bits must be fully accessible.

There are standards for all kinds of buildings and spaces, including schools, hospitals, hotel rooms, apartments, and recreation facilities, though the exact laws that apply to some of these kinds of places are sometimes separate from the Americans with Disabilities Act. Another complication is that the generally, the only officials who are really charged with enforcement are local building code officials, and they technically don't enforce the ADA. They enforce local building codes, which usually, (but don't always), mirror the ADA Accessibility Guidelines.

Nevertheless, basic accessibility does tend to boil down to a few important standards that apply in all kinds of situations.

What does “accessible” mean?

The first thing to say is something I think most people already know, but at times we forget. There are two ways of assessing accessibility. Is it accessible to me, with my disabilities, and does it comply with legally applicable accessibility standards. Accessibility standards aren’t perfect. They aren’t the best a business can do. They are a minimum standard. If every building complied with them, there would be much better accessibility for everyone, though still not complete.

That said, here are some basic standards to keep in your head as you rate accessibility of businesses you visit:

Doorways should be at least 32” wide. That means 32” of clear space, with nothing in the way. Make sure that when you open a door, the door itself doesn’t impede a wheelchair user’s progress in or out.

Hallways and other paths, like sidewalks, should be at least 36” wide. Again, that means clear, unobstructed space. Watch out for aisle displays in stores and things like outdoor restaurant seating that can narrow otherwise adequate sidewalks.

Ramps should also be at least 36” wide, and not too steep. A ramp should take at least 1 foot of horizontal distance for every 1 inch it rises. Don’t measure the ramp path itself. Measure the total height it climbs and the amount of flat space it takes up. Like this:

Diagram of the proper scope for a wheelchair ramp

Ramps should also have railings on both sides. That’s both for safety, (not falling off the ramp), and so people can haul themselves up if they need to, in a wheelchair or on foot.

Entry areas near doors, areas at the top and bottom of ramps, and turning spaces inside restrooms and toilet stalls should be based on a minimum 5 foot square turning area. It’s also helpful in figuring out if other interior spaces are spacious enough or too cluttered. Like this:

Diagram of 5 foot square wheelchair turning space

Accessible restrooms and / or accessible toilet stalls should combine enough clear maneuvering space, toilet height within certain parameters, and secure horizontal grab bars behind and on at least one side of the toilet. Something like this:

Diagram for accessible toilet stalls

Designated disability parking should include spaces marked both on the pavement and on a vertically posted sign, and at least one adjacent access aisle. For example:

Diagram for accessible parking spaces

For the complete accessibility standards applicable in the United States, consult the United States Access Board ADA Standards.

One more note ...

Whenever possible, explain the practical, real-life problems that specific barriers pose. For example, don’t just say, “The doorway is only 29” wide.” Add that this means most wheelchairs can’t get through.


Friday, September 25, 2015

Join The Accessibility Mapping Campaign!

AXS Map logo

Let’s do this.

Dominick Evans and I have set up a “Mapathon” at AXS Map, part of the Celebrate Access Equality 2015 event. Our goal is that by the end of 2015, at least 200 businesses in the United States will be given accessibility ratings by at least 20 people participating in their own towns and travels, using the AXS Map website and mobile app.

Watch this video to see how AXS Map works, and how to approach doing on-site accessibility ratings:

So, what’s the Marathon? It’s just a way to keep track of how many surveys get done during this online-organized effort. To participate, you need to do three things:

1. Register free at AXS Map. This sets you up to be able to enter the results of your accessibility ratings.

2. Go to our Celebrate Access Equality 2015 Mapathon page, and join it. All of the surveys you do until December 31 will be added to our campaign total.

3. Download the free AXS Map mobile app to your smartphone or tablet. This is optional. You can do everything on the website if you want. The app just makes it a little easier to add your ratings immediately while you are out doing them.

That’s it! Simple, right? Tomorrow, I’ll post some tips on how to judge whether or now something is accessible.

Celebrate Access Equality September 26, 2015
If you are disabled, or interested in disability rights, then you probably know the frustration of encountering businesses and public facilities that are still not accessible, 25 years after the ADA became law. It’s frustrating in principle, and it’s a practical barrier to full participation, especially when you don’t know which places are accessible, which are not, and which features are usable. AXS Map documents the issue, and creates a more and more reliable and complete resource on accessibility.

But it’s only as good as the ratings entered. Most cities and towns don’t have any surveys. That’s why we’re doing this. We want everyone who knows about accessibility problems and complains about them to do something constructive about them. Documenting the problem is a vital step, and identifying places that are accessible is incredibly useful. Let’s see how many places we can rate between now and the end of the year!

Also, if you do participate, please keep us and all your friends informed about what you are doing. Share the link to the Mapathon. Post on your Facebook Page and your Twitter Feed when you enter another rating. Encourage your friends, families, and coworkers to join the effort.

If you have any questions or just want to share your experiences, we’ve set up an email for the effort:

We look forward to hearing from you, and seeing those numbers go up!


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Disability Blogger Link-Up

The word Blog surrounded by word cloud
Once more into the Link-Up friends, once more! Share a disability-related blog post or article here, any time between Friday, September 25 and Midnight Sunday, September 27, 2015. And of course, read what others have posted.

Technical note: To make the links easier to browse, in the “Your name” blank, type the title of the article. In the "Your URL" blank, paste the address of the item you are posting. That’s:

Name = Title of your article.
Your URL = Link to your article.

Then click the "Enter" button. That's it!

Go ahead and post, read, and enjoy! This Link-Up will close at Midnight Eastern on Sunday. The next  Disability Blogger Link-Up will start Friday, October 9, 2015.