Accessibility vs. Accommodation

Accessibility is what we should expect to be ready for us without asking or planning ahead. It can be provided by following an easy to implement set of standards and practices that make "adaptation" unnecessary. We can benefit from accessibility without announcing or explaining our disabilities.

Accommodation is for adaptations that can't be anticipated or standardized. They are different for each individual. Although we should expect there to be a general willingness to accommodate us wherever we go, we can't expect actual, specific accommodations unless and until we ask for them. We do have to announce, and may have to explain our disabilities a bit in order to get accommodations.

Accessibility is the baseline of equal service, and accommodation is the second step to take when accessibility alone isn't enough.

Wedding Toast

I attended a wedding yesterday of a fantastic young man and woman … the bride being my brother's wife's daughter. The ceremony and reception were both held at a fairly high-end Vermont resort, and apart from the fact that the festivities themselves were beautiful, the accessibility and accommodations were really very good.

In fact, there's not a whole lot to report, except for some small details so I'll just bullet point them:

• When I checked in to get my hotel room on Thursday, the desk clerk showed me on a facility map where my room would be and how I could drive my car around to reach it. He said he'd have someone meet me over there to get my luggage out of my car. Before I could even get halfway there, the guy flagged me down and said they had reassigned my room to a location they figured would be easier for me during my stay … closer to the action so to speak. Plus, the room as an upgrade, for which they did not charge me. They did this without asking me. People with disabilities usually say that people should ask us before diving in to help, but in this case, I appreciated it.

• There were a lot of small changes in level throughout the resort, but they all were either without steps at all, or steps with accompanying ramps.

• The only bona fide barrier I saw was at the place where guests exited the reception hall to walk across to where the outdoor ceremony was held. There were three steps. I don't especially need a ramp for just a couple of steps, but I did notice it. The steps were pretty shallow though, and I'll bet that they have a temporary ramp available if alerted in advance.

• The bride's grandmother was there using a wheelchair most of the time. She and hurt her knee recently. From where I was sitting for the ceremony, I couldn't see how she handled the steps, and I think she may even have walked "down the aisle" on someone's arm. I might have been offended on her behalf if she were a full-time wheelchair user, but somehow the fact that her impairment was temporary made me think differently about it. For a temporarily disabled person, I guess I'm more understanding of the desire to shed the trappings of impairment and make a "normal" appearance in situations where everyone is watching.

• I didn't notice any ableist social blunders at all, from either the guests or the staff.

I really think that when it comes to big, complex social events like weddings, a relative lack of small annoyances has just as much positive effect as the absence of major barriers and offenses.

A Big Victory for Disability Rights

Disabled Veteran Wins Landmark Discrimination Suit Against FBI

Erik Sherman, AOL.Jobs - August 13, 2013

Outstanding news! This has all the elements to be an excellent case study for ADA and disability rights training. It seems like an especially sharp and clear example of a person with a disability being held to an arbitrary and unnecessary physical requirement, not to mention intimidation and gratuitous personal prejudice. It's the kind of situation where a lot of people would start out assuming the FBI was right, but as soon as the specifics are revealed, it becomes clear that they weren't just wrong, they were villains.

Pass The UN Treaty

Obama on Disability Treaty: 'Get It Done' - Disability Scoop

Hellomynameismaddy - August 13, 2013

I've been thinking about writing a pitch for passing the UN Convention on the Rights of Persons with Disabilities, but never seem to find the time and tolerance to deal with the forces of stupid that defeated its ratification by Congress the first time. This linked Tumblr post is a terrific summary that will serve the purpose.

Of course, I just have to add one more point ...

As noted in the post, one of the biggest reasons ratification failed is because homeschoolers … especially Christian conservative homeschoolers … were told that wording in the treaty about "best interests of children" would be used to overrule parents' decisions about raising their children with disabilities. I don't think that it's enough just to point and laugh at this idea. If you have a child with a disability, you don't have to be a fundamentalist Christian or an ideological conservative to develop an ambivalent attitude about government programs and public schools. Let's just say that Special Education as it is practiced is complicated, delicate, often infuriating to deal with, and produces often disappointing results. Which is not to say that it is wrong or evil or corrupt, but that it is difficult, sometimes impersonal and unresponsive, and weighed down by administrative burdens and old paradigms. Lots of parents, frankly, don't trust their schools and the governments that fund them, so it probably doesn't take much in the way of conspiracy theorizing to get their hackles up. Plus, parents of kids with disabilities tend to feel scrutinized and judged even more than most parents, so I think that they are susceptible to political campaigns aimed at fanning their distrust of any sort of authority.

Politicians know this, but they can't say it or even hint at it because they simply can't be heard criticizing or questioning the infallible wisdom of parents. 

It's not the concern that's laughable, but rather the fact that the possibility of this treaty having any of the rumored effects is so remote as to be nearly zero. Meanwhile, around the world, real-life policies and cultural traditions impose truly medieval hells on millions of children with disabilities, sometimes with full support of parents who literally may not know any better, or who have less than zero influence over anything … a level of powerlessness that the most beleaguered advocate in the US can't begin to fathom.

Anything that alleviates this by pointing in a better direction is worth doing.

ConfessYour ...

I'm doing some grant writing work today and tomorrow, so not much blogging from me. In the meantime, here's something to think about.

Over the weekend people were riffing for awhile on the hashtag #ConfessYourUnpopularOpinion. Most of what I saw was TV and movie critics talking about highly acclaimed titles and actors they actually don't like, but it got me thinking of how this could prompt a rich conversation on disability life, culture, and issues.

What beliefs on the subject do you have that you think others with disabilities would disagree with?

I'll bet that a lot of us would be surprised to find that at least some of our opinions aren't as "unpopular" as we think they are.

Keyword Search

I really think that my much discussed (by me), and perpetually in development website is going to focus a lot on disability in popular culture … TV, movies, books and comics, music, radio and podcasts, etc. On a moment's notice, I can generally brainstorm maybe 30 - 40 shows, films, and characters with a disability disability connection, but I figured it might be interesting to do some keyword searches on the Internet Movie Database, to see how many references turned up for some of the main disability-related terms:

disability - 670

handicap - 194

deaf - 213

blind - 248

I've got some catching up to do.

The President's DAV Speech: Pretty Good

I thought this was a very good speech. He didn't break any new ground, and there weren't any flashes of great insight, but the speech was very well balanced. I'd say roughly 60% of it was about specific policies 30% was inspirational, bordering on sentimental, and only about 10% of the speech was what could fairly be called political … in the sense of serving the President's agenda. I don't know what people there thought, but I think that's a very fair balance.

The policy portion broke down into 5 main priority areas:

1. Adequate budgets / resources … a somewhat political pitch to end the sequester and get Congress to make a real budget deal.
2. Ensure veterans health care … including specific reference to Agent Orange, Gulf War Syndrome, PTSD, prosthetics, mental health and the suicide epidemic, help to caregivers and families, and new efforts to provide more targets healthcare to female veterans. The Affordable Care Act was mentioned only as a reassurance that it wouldn't change anything for veterans who already have insurance, but might help those who don't acquire it.
3. Reduce the claims backlog … reductions have not moved as fast as he wanted, but the backlog is shrinking. Also spoke of improving enrollment systems so that now and in the future, claims will be processed correctly, the first time.
4. Rights and dignity of disabled veterans … ending homelessness of veterans, and mention of the need to pass the UN Disability Treaty, another somewhat political pitch, but not heavy handed.
5. Education and jobs … efforts to curb shady education pitches, and increase Federal hiring of disabled veterans, including a push for a Veterans Job Corps that would organize public service around the country.

Some other things I noticed in the speech:

• I wonder why Sgt. Perez didn't choose to have his leg amputated, rather than endure over 30 surgeries? I believe that in many similar cases, the recovery is much faster and more complete.
• Come to think of it, none of the individual stories in the speech included making effective use of wheelchairs or other assistive devices, except temporarily on the way to "recovery".
• American Veterans Disabled For Life Memorial??? Is that really its name? Why "for life?"
• "Rather than be defined by what you lost … by what you can't do … you inspired Americans by what you can do."
• The President made several references to veterans helping each other … by telling stories of three DAV employees, and by other examples of peer support, including disabled veterans reaching out to people injured in the Boston bombings … "Dedicated not just to your own recovery, but to taking care of each other."
• Regarding the suicide epidemic, the President said he wanted to make sure that, "Those who are hurting know that asking for help is not a sign of weakness; it's part of staying strong.
• Towards the end, the President did mention people getting on by using prosthetics, wheelchairs, walkers, homes adapted for accessibility, and one-on-one personal care. And at that point I realized that he didn't make a single reference or even hint at older-style permanent VA hospitals or institutions. It was all about people going home again, still recovering, but in their own homes and communities, with their families.

Good job, I thought, with an audience that's not a guaranteed slam dunk for any President. I'd like to see President Obama address a broader disability audience. Also, as I wrote a couple of weeks ago, I wish they could figure out a way for him to attend a breakout session or two at these types of conventions … so he could hear some of what rank and file members are learning and worried about.

President Obama at the DAV

I haven't watched the video yet, but I will do shortly, and plan to write my thoughts about the speech tomorrow. I'm putting the video up now in case anyone visiting here would like to see it.

Here is the New York Times article covering the event:

Obama Assures Disabled Veterans They Will Get Aid

Jackie Calmes, New York Times - August 10, 2013

For helpful background on the veterans disability claim backlog, I recommend Kayla Williams' 3-part series in Time Magazine:

What's up at the VA?

What the VA is doing about the backlog

What the rest of us can do to help

More About Jenny ...

Jenny and Eve and the Statistics of Freedom

Dave Hingsburger, Rolling Around In My Head - August 7, 2013

I "shared" a link to this blog post about Jenny on my Facebook page, because of the photo that accompanied it, and the quote added to the photo. But, until a friend "Liked" it on my page, I hadn't actually read the linked blog post. It's really, really good.

The only quibble I have is where Hignsburger says that before the court ruling, peoples' doubts about Jenny were due to the fact that she has Down Syndrome. That's true, but in a weird way. I think we all knew that she had some kind of cognitive impairment, but the specifics of Jenny's disability were mostly either left out of news stories about her, or described in very vague terms. That vagueness is how people with cognitive impairments are always covered by news media … always. And lack of specificity tends to feed peoples' worst imaginings.

It is not impolite to talk about the specifics of anyone's disability, especially when those disabilities are the elephant in the room in debates over basic human rights.

Beginner, Intermediate, Advanced

Reading over my post yesterday about use of the word "handicapped", I'm starting to think that disability awareness isn't a binary, aware / not aware thing. There are levels of disability awareness, each of which represents a step in a positive direction. The problem is that if you're at the "Advanced" level, then people at "Intermediate" and "Beginner" levels seem like they're ableist, when really they're just not as far along in their understanding.

I also think that the successive levels of disability awareness aren't just a matter of each step being more of what came before. I think that the focus and even the philosophies shift, and sometimes reverse with each step from Beginner to Intermediate, and from Intermediate to Advanced disability awareness.

What the hell am I talking about? We need examples to test out this argument and see if it holds water. Stay tuned.

"Handicapped" Is So Over!

A couple days ago I read an article in my local paper about our regional hospital moving one of its primary care clinics to a new location. The hospital spokeswoman was quoted in the article praising the new building for being, "handicapped accessible."*

First of all, that's like praising a newly built house for having doors and windows, or a new car for having a steering wheel. Or rather, it should be that obvious.

Second, it's not the worst offense in the world to use the word "handicapped," but from a professional doing a press interview it's embarrassing.

The semantic difference between "handicapped" and "disabled" isn't all that significant, and I don't really expect most people to have a firm grip on why "disabled" is the more accurate term. But, I think that the transition grace period for converting from "handicapped" to "disabled" has run out. We just don't say "handicapped" anymore. It doesn't matter why … it's just not done, and it makes the person saying "handicapped" sound out of step, like they're wearing bell bottoms.

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* Note: Calling the building just plain "accessible" is fine, no qualifier needed.

Why doesn't NPR have a disability show?

I just realized something that surprised me. National Public Radio doesn't have a disability show.

The BBC has a regular disability show, and so does the Australian Broadcasting Corporation (ABC). They're close cousins to NPR in terms of content and mission, so why doesn't NPR have a disability show?

NPR does have Code Switch, which is not exactly a program but more of a team that produces radio stories, blog articles, and discussions on issues of race, ethnicity, and culture. Code Switch started about four months ago, and so far, their remit has not included disability. I really like their approach to what they do cover, and I really like the idea of a team producing stories that can run at any time, not just in a scheduled, separate show. This would have been especially helpful a few months ago when NPR explored the rise in the number of Americans on Social Security Disability Insurance. The weeklong series of stories was more thoughtful and substantive than I what just about any other news outlet would produce, but the lack of expertise on living with disabilities showed. Having a regular team to cover disability issues would have made the series even better.

Should the Code Switch team add disability coverage to it's slate? That would be the least disruptive to NPR's current structure, since Code Switch is already organized and running. Also, I'd much rather see disability categorized with race, ethnicity, and social identity issues than, say, health, the other main category disability tends to be dumped. However, I think I'd rather see them set up either a regular disability show, or a disability team along the lines of Code Switch, but separate from it, and as a distinct topic of its own. Maybe they could occasionally do crossovers and collaborations with Code Switch, as well as with their teams on economics and, okay, health care.

Why does this matter? Because while NPR can be annoying, pretentious, and easily mocked, it really is the go-to place for creative, in-depth journalism on any and all aspects of American life. I have more faith in NPR's ability to dig into disability issues than I do for just about any other news organization. They might even do better than some of the better disability studies programs and disability rights organizations, which do great work but aren't always … well … "accessible" to mainstream audiences.

Maybe it's time to petition NPR to do this.

Followup About Jenny

Disability No Excuse to Deprive One of Civil Liberties

Susan Mizner, Disability Counsel, ACLU, Huffington Post - August 5, 2013

This is a terrific piece about the guardianship ruling I posted about yesterday. It's an essential followup because Mizner explains effective alternatives to guardianship that address some peoples' need for support in a more limited, targeted way.