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.

ADAPT Little Rock Protests ... What They're All About

This is a really well-edited video that explains last week's ADAPT protests in Little Rock, Arkansas.

I feel like ADAPT protests always risk conveying sensational images without adequately explaining what they are protesting. To the ordinary observer, not familiar with disability policy, ADAPT protests can look spectacles whose only object is excitement and personal empowerment for its participants. ADAPT protests certainly are both exciting and empowering experiences. For disabled people, especially, there is something really ... special ... about using our physical differences and uncompromising presence to make useful nuisances of ourselves.

However, ADAPT is also an utterly practical, disciplined organization, laser-focused on very specific policy goals that are at the heart of what most concerns disabled people ... getting the help we need to survive, but with the personal control and autonomy we need to thrive as well. There are well-tested, proven, cost-efficient ways to do this that work for people with all kinds of very "severe" disabilities, and that do not involve nursing homes or similar "facilities".

That's my favorite part of this video montage, the local reporter who perfectly described ADAPT's point. We don't want more facilities that protect and control us. We want services that we control and that liberate us to live and work in our own communities like everyone else.

Weekly Wrap-Up

History, Red Band, and Game Of Thrones.

Sunday, September 14, 2014

• "Red Band Society” Followup

Monday, September 15, 2014

• Historical Reminder
• #JusticeForIssy

Tuesday, September 16, 2014

• T4 Monument
• Buy It - Game Of Thrones, Season One

Wednesday, September 17, 2014

• Meanings Of "Special"

Thursday, September 18, 2014

• Red Band Society - Pilot
• Video Of The Day

Friday, September 19, 2014

• Disability.TV Podcast - Game Of Thrones, Part 1

Saturday, September 20, 2014

• In The Driver’s Seat

In The Driver's Seat

Getting a Driver’s License When You Have Special Needs…This Amazing Young Woman Shares Her Story

Charisse Hogan, Shared Abilities - September 20, 2014

I wish Charisse’s video had been available when I was young.

I learned to drive during my Senior Year in college, which isn’t really all that late, I know. At the time, though, it felt like I was finally getting around to trying one of the few things I had put off in my life specifically and solely because of my disability. It was scary and alluring at the same time. And the first, most important obstacle actually to experience the physical sensations of driving. After literally only about 10 minutes of tentative driving in an empty parking lot, with an instructor and a driver’s seat piled high with with text books and pillows, I knew that driving was going to be possible. In fact, I quickly got the feeling that it wasn’t even going to be that difficult. Before that, I couldn’t imagine doing it.

Maybe that’s a disability thing. We have a little more trouble imaging in doing certain things other people do, and there are both physical and psychological hurdles to even trying.

I was also very fortunate not to be tied in with a formal training program of any kind. I hired a local high school driving instructor who also had a talent for adaptation. He worked up the measurements for changes to the driver's seat and pedal blocks, which a local car customization shop implemented. Of course, I didn’t have any neurological issues to deal with … for me it was mostly about my height. I often wonder how things would have gone for me if I had needed adjustments more completed than a lifted and tilted seat.

Anyway, given the scheduling difficulties she mentions, it’s great that Charisse started the process early. If she gets her license this year, she’ll have gotten it a year earlier than the age I got mine.

Disability.TV Podcast - Game Of Thrones, Part 1

On this week’s episode of Disability.TV, Alice Wong and I discuss Tyrion Lannister, the most prominent and loved of many disabled characters on “Game Of Thrones”. You can find Alice’s commentaries on disability issues and popular culture at the Disability Visibility Project, The Nerds Of Color, and on Twitter @SFdirewolf.

Upcoming Podcasts

September 26

Mini-Cast

October 3

Game Of Thrones - Part 2

Guest Co-Host Alice Wong

October 10

Mini-Cast

October 17

Glee

Guest Co-Host Cheryl Green

October 31

Ironside (2013)

Guest Co-Host Kamilah Proctor

Click one of the links to subscribe to the podcast at iTunes or Stitcher.

Video Of The Day

It seems appropriate to embed this Amputee OT video, seeing as how two of the main characters on “Red Band Society” are amputees. Another detail I didn’t mention was that Leo never wore a prosthetic in the Pilot, at least not that I noticed. Since it isn’t clear how long ago his leg was amputated, so maybe he’s not ready for one yet, but it could be just another authenticity fail on the part of the writers.

Red Band Society - Pilot

I just posted my review of the “Red Band Society” Pilot episode. There are lots of flaws here, but with luck, some of them could turn into assets if the writers have the understanding and courage to make it happen. I think those of us who have disabilities, and had them in our youth. will find enough here to keep us engaged, and not entirely consumed with nit-picking.

Red Band Society 1×1 ‘Pilot’: The best hospital ever

Andrew Pulrang, Gotta Watch It! - September 18, 2014

Stay tuned. I’ll be reviewing every episode of this first season, on Thursdays after Wednesday night airings.

Meanings Of "Special"

Disability-Focused Charter Schools Renew Inclusion Debate

Arianna Prothero, Education Week - September 16, 2014

This is one of the best articles without a definite axe to grind that I have read about inclusion vs. self-contained special education.

I have a feeling that one of the factors influencing why some parents of disabled kids move away from inclusion, towards "special", disability-focused charter schools is that people with different backgrounds and life experiences have different ideas of what "special" means.

To some, "Special" is:

Notable, remarkable, tailored, individualized, enriched, prestigious.

To others, "Special" means:

Stigmatized, ostracized, relegated, segregated, sheltered, excluded.

Some peoples’ experiences of “special” are positive, suggesting consumer goods and services that are individually crafted, made to order, as opposed to manufactured and standardized.

Others understand “special” more in terms of unwanted attention, deprivation, even punishment.

Sometimes, the word “special” drips with irony and smarm. It's a euphemism. It's supposed to be a good thing, but isn’t always meant that way.

Other times, it’s more straightforward. Sometimes "special" really means "better" or "exceptional".

For some of us, the idea of "special" schools will always have a sinister connotation. For others, "special" schools suggest students who are cherished and given generous attention, with the most advanced and expert educational techniques.

The flip side, of course, is that some view "mainstream" public schools as the most promising way to ensure inclusion and capability in adult life, while others see them as rigid, bureaucratic institutions where anyone different is neglected and uniqueness is ground down into bland conformity. Or worse, they are ultra-competitive and socially ruthless, while "special" schools are safe havens where especially sensitive, atypical students have a better chance to thrive.

All of these images and feelings are in active play, related to but also separate from verifiable, quantifiable facts about how education of kids with disabilities works, what it does and doesn’t do for them, and how it succeeds and fails to meet parents’ needs and expectations.

I find whole topic complicated and upsetting.

Buy It - Game Of Thrones, Season One

Season One introduces us to two of the series' many fascinating disabled characters ... Tyrion Lannister, a.k.a. The Imp, a.k.a. The Half Man ... and Bran Stark, the young son of Eddard Stark, and a paraplegic. Seeing the very different roles these characters play in the sprawling story shows the different ways disabled characters can function on TV shows.

If you haven't watched the show, what are you waiting for? And don't forget to tune in to my Disability.TV Podcast discussion of disability on "Game Of Thrones", with Alice Wong (@SFdirewolf), posting this Friday, September 19.

T4 Monument

Nazi 'euthanasia' of the disabled 'can never be forgotten’

Andreas Jürgens, Deutsche Welle - September 2, 2014

Monument Seeks to End Silence on Killings of the Disabled by the Nazis

Melissa Eddy, New York Times - September 2, 2014

Remembering the Nazi T4 program is important, and not just in the "don't forget about us" sense. The reasons why disabled people were targeted were in many respects similar to why other groups were targeted, but in other ways different.

On the one hand, Nazis argued that life with disabilities was intolerable for the disabled themselves, and that killing them was an act of compassion.

I have seen footage from Nazi propaganda films that push the supposed wretchedness of life with a disability by showing disabled people living in neglect and squalor. It's a more distilled version of how people today conflate the stigma and bureaucratic nightmares imposed on disabled people with the experience of disabilities themselves. We treat disabled people horribly, then look at them and note how horrible it is to have a disability. Treating disabled people better doesn't seem to be taken seriously as an alternative solution. Instead we get increased support for "assisted suicide", and in the Nazi's case, forced euthanasia, (i.e. medically murdering disabled people).

Nevertheless it’s an interesting difference. I may be wrong, but I don’t think the Nazis ever tried to justify killing Jews, Homosexuals, and Communists by saying that it was a kindness to them.

At the same time, Nazi theorists argued that disabled people were an unproductive drain on the state's resources, a negative drag on the ongoing biological improvement, strengthening, and purification of the German race. So really, it didn't matter whether killing disabled people was compassionate or not. It was good for the state, and good for the race, and for the Nazis, that was reason enough.

Both arguments ... compassion and the good of the state ... were full of shit, but you can still hear echoes of those arguments today. It is striking how often discussions of, say, assisted suicide start out citing individual choice and the compassionate end to someone’s suffering, and then morph into musings about the high cost of sick peoples’ final months and the “wastefulness” of “extending" peoples’ lives with “machines”.

We need this specific memorial to this part of the Holocaust because we need the reminder that horrible policies aren’t only enacted for explicitly horrible reasons. Sometimes, they develop out of ideas that seem to some to be eminently reasonable, even progressive.

#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.

Historical Reminder

“Each refused to surrender to physical limitations that might have destroyed them.”

— Narration about Theodore and Franklin Roosevelt, in Ken Burns’ documentary, “The Roosevelts: An Intimate History”

When we question the idea of “overcoming” disabilities today, we should occasionally remember that not so long ago, many if not most disabilities really did threaten to “destroy” people, either directly or indirectly. Many disabilities still do, today, but the line between illness and disability then was far more blurry then as it is now.

"Red Band Society" Followup

Hollywood has it wrong: I’m a teenager with an illness, and it’s not glamorous at all

Lillie Lainoff - Washington Post - September 12, 2014

I saw this article only minutes after posting my piece yesterday on upcoming new TV shows with disabilities themes, in which I expressed some cautious optimism about "Red Band Society”. After reading the article, I’m a bit less optimistic, but I will still be looking for positives I think may be there.

One problem may be the rather hard to define but in some ways crucial difference between chronic or terminal illness … like cancer or cystic fibrosis, and disabilities … like being an amputee or a paraplegic. As I mentioned yesterday, the line is blurry. However roughly speaking, one group copes more often with active pain, illness, and unpredictability. The other group has to focus more on adaptation and social integration. One group may or may not survive. The other probably will, for the long haul, while their disabilities will always be with them. It looks like this show will mainly be about illness, not disability. My interest is partly in seeing how the two kinds of situations can be both different and similar.

I agree with Ms. Lainoff that another big problem is how the hospital will be portrayed. I think they might get away with giving us such a happy, nurturing hospital with so much freedom granted to the patients, if the show made clear that it is some kind of special, innovative institution designed specifically for seriously ill teens. Maybe they talk about that in the Pilot, but Ms. Lainoff didn’t mention it, so I’m doubtful. It’s okay to show an atypical, idealized setting, as long as there is some explanation for that. Otherwise, it’s just rose-colored glasses.

As for how Red Band Society’s characters represent chronic illness or disability, again it makes a difference which thing they want to represent. A cheerful representation of chronic illness will seem more fraudulent than if they really mean to portray disability. Maybe the writers and show runners are confused. Non-disabled people who create movies and TV shows are very easily confused about the ideas and ideals they think they are presenting.