Tuesday, September 23, 2014

Highlights from CNN comments - #AbleistAbuseIs

Ableism in Action - These are comments from my recent CNN article on Kanye West. These are not trolls. These are people genuinely trying to express their thinking. Italics are me. Many of the issues here relate back to my post on "Hidden Disabilities," featuring longer comments from readers.

hgflyer lollardfish7 minutes ago
While I can appreciate your article, and while I am mostly sympathetic, I cannot get on board with handicapped parking. I feel that item should be removed from the ADA, thinking that if you're disabled to the point that you need a special parking spot, then you probably shouldn't be behind the wheel of a car.
If you need a special spot, you shouldn't drive

zzlangerhans34 minutes ago
Aaarghhh! These kinds of articles are so irritating. It's obvious to anyone but the most rigidly humorless that George Takei wasn't accusing a woman of faking a disability (who would choose a wheelchair over walking?) but rather MAKING A JOKE! Kanye, clumsily, was doing the same. Part of the reason that people recognize those names (along with those like George Carlin, Jerry Seinfeld, and hundreds of others) is that they don't conform to your uptight standards of what is verbally permissible. A real society needs that, not your neverending list of nonos and restrictions.
People give dirty looks to people who walk comfortably from their handicap spots because they support the handicapped, not because they think they are all faking. Many of those people use their relatives' handicap tags, some of whom have already died. The bureaucracy is lax and we all know it. As the son of a person in a wheelchair, I had to park many times in a regular spot and struggle to get her out because the handicapped spots were full. I didn't give the young healthy people in the handicap spots dirty looks, but I had a few choice thoughts for them. If you actually know a person with a serious physical handicap, they will tell you being "forced to prove their handicap" is the least of their worries.
Please stop trying to correct everyone's behavior and stop comedians from making jokes. You're a bore and an annoyance.
Interestingly, the people with serious hidden disabilities tell me that being forced to prove their disability is one of their most stressful worries. "It was only a joke," furthermore, is the cry of the abuser or the enabler of abuse.

FactsRBad35 minutes ago
Few months back, I saw some young adult park in a handicap spot at the grocery store, get out of his car and run into the store as he was apparently in a hurry. This is not an isolated incident. Getting a handicap sticker for your car is very easy - and I've seen too many folks who get out of there car and move just fine abusing the process. There should be some stricter standards.
Again, parking is the the thing everyone focuses on. It has a semiotic value that's fascinatingThe wheelchair symbol carries power but limits our understanding of what disability /is/.

Lilly Que44 minutes ago
Stupid! I've never seen or heard ANYONE question a person's disability. You are making a problem where one does not exist. And Kanye is nothing but a pathetic narcissist. Those people paid for their seats not the other way around and if someone wants to sit, lie, or jump up and down on that seat, or not, it's none of his business.
Kanye is the problem, not society

Howda Yadooan hour ago
It's a two way street. There are those that claim disability that are not disabled so they can get free money. In turn, this causes many to question the actual disabled because of the stigma associated with it. Claiming disability has been the new form of welfare since the late 90s and many of us that have worked in the field have seen it first hand. It's unfortunate but it's also real. I feel bad for those with "invisible" disabilities but I believe you're pointing the finger at the wrong people. It's those that abuse the system that have caused the crooked stares.
Come to my Facebook page, read the comments from people with hidden disabilities, and you'll see that these people above are mistaken.

Monday, September 22, 2014

Update - Special Olympics Washington Apologizes, sort of.

Special Olympics Washington tweeted to me this:
Special Olympics WA@SO_Washington
@Lollardfish Our apologies. The intent was not to glamorize or offend. The name has been changed to “Run with the Cops”. Plz read below:
They then deleted that tweet (hence no link), but later re-confirmed that they are changing the name.

Here's their statement in full. I offer a few thoughts.

It was started by a police officer. I believe in his good intentions.
Since the first “Run from the Cops” here in Kennewick, other LETR programs in the US have contacted us soliciting the specifics of the run in order to create their own “Run from the Cops” SO fundraiser. I personally have been contacted by three other US state programs who have started their own events.
The Run was not intended to be a negative reflection of law enforcement, nor was it intended to glamorize the act of “running from the police.” It is solely designed to be a fun, family‐oriented event, ultimately benefitting Special Olympics. In the three years we have hosted the “Run from the Cops”, we have raised gross funds of approximately $28,000, and touched at least 1000 people, just counting the actual participants.

On a personal note, had it not been for the “Run from the Cops” here in Kennewick, I would not have had the opportunity to meet Joshua. The attached photo shows Joshua competing again this year at our Run. He has competed every year, and absolutely loves the opportunity to be involved. His mother has expressed to me her personal gratitude as Joshua looks forward to our event all year long.       
I believe that he and Joshua have a good relationship.I believe that they have raised money. I am sure that other privileged communities think, "oh, that's fun and funny!" That's wrong.

I want you to imagine a group dedicated to relieving poverty in minority communities held a "run from the cops" event.

So, with protests of having meant well, Special Olympics is changing its events. It's a small start. I hope they think long and hard about what it means that so many communities don't see running from the cops as something that's funny.

Sunday, September 21, 2014

Special Olympics - Run From The Cops; Fund-Raising Based on Privilege

In Washington State, the Special Olympics organized a number of "Run From the Cops" events, with the final one taking place next week. I'll let them explain.
Grab a “partner in crime” and support the more than 10,000 Special Olympics Athletes across the state in this unique nighttime 5K. Walkers, runners, kids and costumes are welcome. All participants will receive an event t-shirt!
Special Olympics Slammer!

Law enforcement will be staged throughout the course “encouraging” participants to finish in under 45-minutes to avoid being corralled and placed in the Special Olympics Slammer! Those not finishing in under 45-minutes will be ticketed for not out running the cops.
I know this is meant to be in good fun, but it reflects a lack of understanding of the fraught relationship between police and people with disabilities in this country. Moreover, it embodies a kind of privilege that needs to be called out. More on that at the end.

Most of all, it offends me on behalf of all the dead bodies of people with disablities, bodies of men and women who ran from the cops, or didn't obey the cops, and were killed by them. This is not a joke. It's life and death for the people we are and the people we love.

First, as readers of this blog know, running from the cops is among the most dangerous actions a person with disabilities can take. Running from the cops violates compliance, violating compliance leads to tasing, beating, and shooting. At least once a week, I find a new story about someone with a disability failing to comply properly in the eyes of the police, and gets hurt. So this event is lampooing a behavior that results in death for far too many. There is, for example, speculation that Darren Hunt in fact had special needs (though this as not been confirmed). He was shot repeatedly in the back while running from police. Linking disability to running from the cops is not, in fact, fun or funny.

Second, the whole "slammer" language also bothers me. Prisons are intensely dangerous places for people with disabilities, while also becoming the default place to put an "unruly" person with psychiatric disability.  The Rikers Island cases, reported by the New York Times, focus heavily on the such abuse. Linking disability to being thrown in the slammer is not, in fact, fun or funny.

EDIT: Third, as Walkersvillemom says below, all the false confessions from people with intellectual disability, resulting in unjust convictions, jail terms, and even death sentences. Some have died. Others, like in North Carolina, were released after 31 years.

I have asked Special Olympics Washington for comment and will publish it if they respond. I'd like to know who came up with this event.

To me, the whole thing emerges from privilege, and it's a privilege I share. Today I was walking with my kids towards a playground. A police officer left her car and came walking quickly towards me. I never panicked. I never got defensive. I never ran. She gave us free "slurpee" coupons, then, as my son (a 7-year-old boy with Down syndrome) approached the police cruiser, she asked me if he would like it if she turned on the lights. He did. He made his "lu-lu-lu" siren sound and was difficult to pry away from the car so the police officer could go back to looking for motorists using their cellphones. Only a passing train took his attention away.

This is normal in the white middle class suburban world in which we live, and I am grateful for that. I am grateful to the police and would rely on them to help if my son ever got lost. I am so very privileged in my relationship to law enforcement. I know this, and the goal is to extend that privilege to every community, of all races, classes, genders, and levels of ability.

But I would never make the mistake of thinking everyone shares that privilege, or that being thrown in jail or running from the cops was funny.

Because it's not funny. On the other hand, if Special Olympics Washington wanted to get attention for their event, they got it! We're all paying attention and the next move is yours.

Sunday Roundup - Disabilities and Proof

This week was focused on what the Kanye West incident tells us about disability in our culture.

  • I wrote a brief blog post about it here, linking it to another post on the "pencil test."
  • It got a very good response, so I wrote another piece about it for CNN, building on the argument.
  • That too got a big response, so I wrote another piece about disability as a spectrum, rather than a simple either/or binary. 
  • Finally, at the end of the week, I took two emails (which were emblematic of another hundred emails and comments), and wrote them into yet another post about Hidden Disabilities. In some ways, that may be the most important piece of the week, highlighting the voices of a skeptic who wants to be a good person, and a person whose disabilities cannot be seen.
This week embodies what I value about the blog. Any individual post might get from 100-2000 readers, but the posts are iterative, linking together, building a more complex argument or set of examples than any single piece of writing, and periodically poking through to mass media. I am grateful to each reader, each share, each comment.

I also wrote two other little posts.

  • One about #JusticeForEthan, a topic to which I return again and again, and the terrible brother of the sheriff who wants to deny people with disabilities and families of people with disabilities their independence.
  • Another about conference interviews, a practice in academia that perpetuates inequality. More on this next week when Vitae publishes an essay of mine. 

Saturday, September 20, 2014

Hidden Disabilities; or, You Have No Idea What You Are Seeing

Last Tuesday, CNN published an essay of mine that took the occasion of Kanye West's bad behavior, in which he demanded fans prove their disabilities, to talk about the way that this happens to people with disabilities all the time. 

Response was mostly very positive, but I always pay attention to criticisms, even though I don't let them wound me. The two interesting ones were:

1) I was letting West off the hook for his ableism. I wasn't, and most people saw the clear condemnation of his actions in the essay, but I could have said a more clear KANYE WEST WAS BEING BAD clause, I guess to make it more obvious to casual readers. That's actually a good note for me as a writer - never assume a point is too obvious. 

2) The second criticism basically agreed that West was a bad man, and that people with disabilities have it rough, but then try to shield themselves from my criticism of their suspicion and doubt. They say - and I had roughly 25 of these comments and emails and tweets - there's so much fraud! What can we do but doubt? (and no doubt more in the 1300 CNN comments, but I have not read those carefully, as there's so much noise it's hard to find signal there).

To this, I point to the many more people who took time to write about their experience with disability and the way that the suspicions affect them. I'm going to quote two emails, identifying marks removed, with permission of the senders. And then offer a few more comments at the end.

Email 1: Criticism. I have bolded a paragraph I find interesting.
Dear Dr. Perry,
I read your essay on CNN’s website, "Kanye West and proving your disabilities.” So many of your comments were spot on, but you failed to mention at least one motive for why people want to see proof of disability: that many people are abusing the system. Those of us who have to cope with genuine disability issues resent the abuse. In my opinion, the number of people who are abusing the system is growing.
My mother is 85 years old, has Alzheimer’s disease, depends on a walker for balance, and cannot walk far. She has had several accidental falls. We carry a handicap hang tag in our car for the times when she is with us. My mother loves to go out on errands with me. It is a marvelous treat for her to leave her “Reminiscence” residence and spend time together. I take her out when I can (about once a week), even though her mobility problems, cognitive impairment, and incontinence slow me down a lot. It is my gift to her. My wife’s 89 year old father is also disabled with arthritis and gout. He uses a walker and sometimes must resort to a scooter/wheelchair. We use the hang tag when he is with us. We do not use the hang tag unless my mother or father-in-law is with us. 
All too often when we arrive at a destination, EVERY handicapped parking space is occupied. All too often, I see people who appear to be abusing the handicapped parking spaces. I am not so callous that I do not give them the benefit of the doubt. I do not glare or stare or judge or express disapproval. You are right, there is no way to know for sure. 
Nevertheless, I have seen many people who are unquestionably abusing the system. They do not have invisible disabilities. I am not a doctor. Obviously I do not have access to their specific diagnoses. I do have basic common sense. I have seen young mothers swinging and tossing their children as they all skip to their cars in the handicap slots. Trust me, none of them were disabled, invisible or otherwise. I have friends who have worked as insurance investigators. They have told me about cases where they photographed “disabled victims” doing decidedly non-disabled activities. I can cite other examples, but you get the idea.
In my opinion, there are two types of abuse: 
1. PEOPLE RECEIVE DISABILITY ACCOMMODATIONS WHEN THEY DO NOT REQUIRE THEM 
I recognize that our populace is aging. Furthermore, a growing percentage faces worsening health issues, some of them due to poor lifestyle choices. Both are contributing to an increase in the number of individuals who genuinely need and qualify for disability accommodations. The growing numbers of the genuinely disabled are a contributing factor to the declining availability of accommodations, such as handicapped parking. With that understanding, I also believe that more people than ever before have recognized the advantages of disability accommodations and found ways to game the system in order to qualify and use them even though they do not require them.  
2. PEOPLE ABUSE THE DISABILITY ACCOMMODATIONS OF OTHERS
Normal, healthy people abuse the handicap hang tag that belongs to a parent or other disabled person. I believe that the number of people who do this is also growing. 
 
CAVEATS:
I am not an expert in the field. The basis for what I have written is my personal observations and the observations of those whom I trust. I cannot cite specific data or research, but I believe that a well-run scientific study would confirm my assertions.
 
SUMMARY:
I believe that many people are abusing disability accommodations. I feel frustrated and angry about it because of the direct impact it has on my mother and father-in-law. I recognize that many people have invisible disabilities that are not readily apparent, but I also believe that I have seen numerous examples of abusers, too. 
 
Those with invisible, latent disabilities have a right to feel oppressed and angry at those who would judge them and their situation. Your essay provides good examples of why we must avoid judgement or expect proofs of disabilities. I hope that those who have invisible disabilities share my frustration and anger at the people who abuse the system, for those disabled individuals must also deal with similar lack-of-available-accommodation situations. 
Sincerely yours...
So there we have it. One of the interesting things about this is that it opens with a discussion of fraud, but quickly turning to the thing we all focus on most: handicapped (or rather accessible) parking. I'd like you to notice that paragraph I bolded. It starts with "unquestionable," but then says, "I believe..." He perceives, he trusts his perceptions, and he judges. This is just one of the reasons I work so hard on how we portral/represent disability in our culture. People think they know what disabled looks like, but they have no idea. People think they know what "disabled activities" look like, what disabled people can do. So let me set you straight - disabled people, as a group, can do everything. Some can do some things. Some can do other things. Some can do some things some of the time, other things none of the time, and all things most of the time.

The author and I had a highly productive email exchange in which I talked about the ways in which our perceptions deceive us and ended on a good, open-minded note. I like this emailer and hope he's reading this blog (he said he'd check in). But rather than let me go on, here's email #2:


Dr. Perry,
Thank you for writing about those that have physical issues that can't be seen. 
I suffer from pulmonary fibrosis, my lungs are so scarred that breathing is pretty difficult when I'm in motion. I also have polymyositis and my muscles weaken pretty fast when I use them for anything. Up until about 5 years ago I did triathlons and was in terrific shape. Fortunately that is one of the major reasons that I am still alive today - that I conditioned my muscles and lungs so well. The problem though is that I look to be in top notch shape but my insides aren't worth a cuss! 
When I go to public places and am unable to find parking relatively close, I park in the handicap space. I've had a handicap permit for two years now. There have been times when I get out of the car and people give me the meanest looks. Just last week a lady approached me, she was so angry that she was practically spitting when she spoke to me. After I pulled out my iPhone, showed her my medical info with all of my conditions, the meds that I take, the team of doctors that take care of me and all the procedures that I've had, she was in tears. She was a nurse and knew very well how debilitating my condition could be. Also as I talked with her it became very apparent that my breathing was becoming very labored - at rest I get that way when I'm stressed and talking long. Anyway, she thanked me for teaching her a valuable lesson.

My son plays for the COLLEGE SPORTS TEAM REDACTED. Just this past weekend I attended the game, had to park far from the stadium. A golf cart drove by, with handicap sign on it for those that needed a ride. I put my hand out to signify that I needed them to stop for me, twice the people driving said no, wouldn't even listen to my explanation. The third guy stopped because I stood in his path. I explained my condition, he begrudgingly let me ride but made it very apparent that he didn't believe me and was pissed that I was even in his cart. 
I hope many read your column and think twice about judging those that look to be perfectly fine because they may very well have life threatening issues like I do.

Well thanks for letting me vent in the middle of the night - can't sleep because of incredible pain from all of my medical issues. I will be forwarding you column to my friends, who understand but hopefully they'll share with others that are not sensitized to this issue.
So here we have someone who had to prove her medical condition to a total stranger in a parking lots. This is the quotidian version of the Kanye concert.

In my comments, in my email, I have dozens of these comments, these stories, in which a challenging medical situation becomes harder because of our suspicion and doubt, because even a smart nurse educated in disability issues still feels the right to demand a diagnosis in the parking lot. Not even the right - that nurse with her medical knowledge felt a duty to question, to challenge, to force proof.

I offer three conclusions.

1. Disability is not a binary, it's not a yes/no, disabled/abled. Disability takes place along a spectrum, or rather multiple spectra, as we move in and out of disability over our lives or even over the course of  a day. Read more on this here.

2. There is fraud. There will always be fraud. The question is how much fraud are you willing to tolerate in order to make sure people get the accommodations that they need? In the context of situations like social security, we have procedures in place designed to make it hard to get qualified. People do cheat the system, but there's lots of evidence that people with hidden disabilities actually have a hard time qualifying, even if they need it. Any system doling out benefits will have fraud. It's just a question of how much do we tolerate.

3. As for parking. Reader 1 is angry because it's a scarcity model. There are only a few parking spots, his mother and father-in-law sometimes can't use a spot, and that makes him mad. It intensifies his suspicion. Instead, we need more spots, more accessible parking, more golf carts for rides, more universal design. The scarcity model causes problems.

Also, I think, the symbol causes problems. We have formed a link in our minds between the wheelchair and the parking spot. Even Kanye West said, in his definition of disability, "Unless you got a handicap pass and you get special parking and s**t." The wheelchair, the parking pass with the wheelchair on it, these are the symbols of disability in our minds. That's a problem of representation too.

Thursday, September 18, 2014

#JusticeForEthan and the Election of a Sheriff

I started writing about police violence and disability because of the death of Ethan Saylor. I had read stories like this for years, but when Ethan died, unlike during previous tragedies, I had a few links to media.

I first wrote this piece for The Nation.
I then wrote this widely-read piece for CNN and did a lot of radio after.

I began to study police training in earnest, first wrote the words "cult of compliance," and have now published repeatedly on this subject. It's always in Ethan's memory.

Right now, in Frederick MD, there's a sheriff's election about to take place. The men who killed Ethan were deputies. In the wake of his death, the right-wing tea-partier anti-immigrant pro-income-inequality Sheriff Jenkins made it clear that his boys did nothing wrong in his eyes. He got support from the local government, too (this is my piece on the villains of the story).

He's up for re-election. Karl Bickel is running against him with the full support of the Saylor family and the disability community. Follow this link for a Saylor-family online fundraiser for Bickel.

That's not actually why I'm writing this blog. I'm writing because Sheriff Jenkins' brother, Gary Jenkins, put a letter about Ethan Saylor in the local paper, which I will quote in full.
It is unfortunate that Ethan Saylor lost his life in a preventable situation. With that said, I for one am tired of hearing all the theories of who is to blame, especially the security officers (who happened to be off-duty deputies). According to The Frederick News-Post, all witnesses conveyed that security did not act inappropriately or mistreat him in any way.
Some people tried to blame the movie theatre staff, saying they could have let him stay for free. These are mostly young adults doing what they are told and afraid to lose their jobs. Patti Saylor blames Sheriff Chuck Jenkins, again misplaced.

I would suggest Patti go to the bathroom, look in the mirror and face the blame. What was she doing that night so important she could not accompany Ethan to the movie? I know we all need time alone, however, she should have known better to send him out in public with someone ill-equipped to handle him. If she couldn’t go, keep him home in his comfort zone or send him with someone properly trained. According to The News-Post, she directed his care provider to leave him alone in the theater, another mistake for which she is to blame. Her poor choices are to blame and she should accept responsibility.

Then we have Karl Bickel show up with a political agenda and criticize our sheriff over the incident, while he has no clue what happened as he did not bother to read the report, according to an article in the Aug. 28 News-Post (“Saylor endorses Bickel”). Here again, he is trying to capitalize on the death of a young man. Disgusting and shameful behavior; certainly not what I would expect from a candidate for sheriff.
I want to focus on that this paragraph, the one that blames Patti Saylor for her son's death. To Jenkins, society cannot adapt to people with disabilities; rather, people with disabilities must be kept contained at all times or their parents are to blame for what happens. Patti and her aide made reasonable decisions.

The only people who made unconscionable decisions were the deputies who decided that Ethan's non-compliance justified throwing him to the ground and handcuffing him, a process during which he asphyxiated. They have never been held accountable for their actions.

These are the stakes in the battle for inclusion. These are the stakes in the battle to support the ADA and its continued implementation. The stakes are high.

Good luck to Karl Bickel.

Wednesday, September 17, 2014

End the Conference Interview, Take 47

On Chronicle Vitae, today, I will have a new essay about ending the conference interview. In it, I offer ways to make the shift into a positive rather than a surrender to austerity.

Listen. The conference interview is, in fact, already dead. Video interview technology is getting better and better, funds are limited, and like all traditions this one is going to fade away. It might take 20 years. But it's not going to last forever. The question is whether we, as faculty, manage this transition or whether it is eventually simply done to us by cost-cutting administrations.

Some background.

  • I wrote these two blogs on the topic last November. They were by far not the first pieces pointing out the flaws in the system.
 For example.
Not long after I wrote my blogs, though entirely unconnected to them, the issue thoroughly exploded as a result UC-Riverside's job offer which promised to offer all-of three days of warning to candidates they wanted to interview. Rebecca Schuman's wrote an anti-interview piece, there was a backlash to her tone, then a backlash to the backlash, and so forth.
 Ok, caught up?

After all this was over, last February, I thought to myself. Next fall, early in the semester, I will write another piece on the conference interview. I will really think about how I might persuade skeptics and holdouts, people who believe the interview does more good than harm, people who are not bad or callous, who understand the financial issues, but who just are resistant to change.

Today's piece in Vitae, exploring how we might take control of funds once used to send people to the conferences for interviews, and re-purpose them, is my attempt at that.

I've spent a lot of time thinking about and listening to reasons that the conference interview is good. To my mind, they boil down to the following:

1. Skype sucks.

I deal with this in my piece. Low-rent skype using lousy hotel-room wi-fi does, indeed, suck. Professional video conferencing is pretty reliable. And as I describe at the end of this piece, face-to-face interviews, whether in the cattle call room, the hotel-suite sitting area or (NO NO NO!) on the hotel-room beds, have their problems too.
I try to think of it like math. Video interviews - free vs Conference interviews - thousands of dollars. There's no way that equation doesn't work out for video conferencing.
2. Going to the conference shows that we, the hiring department, are serious.

In this age of precarity, no department needs to prove they are serious. There is no school that will not have plenty of qualified candidates for any position. There are other ways to indicate your seriousness.

3. Conference interviews provide networking etc. to young PhDs.
I believe this can be true. Graduate training programs should budget in sending a senior grad student to their disciplinary conference, and then conferences should build programming designed to serve this population. In fact, they already do, but imagine of they were just there for the conference, not amid the interview madness. The experience will be so much better.
4. We've always done it that way

Well, not really, it was in the 60s and was a good thing too, as it helped break the "old boy's network." Before that, people just called up friends and asked them to send over a graduate student.
That time has passed. Moreover, video conferencing will do just as good a job and keeping the process "honest."
My next step is this - I am going to start calling search chairs that state they are going to hold interviews at conferences. I will ask them why. I will offer them anonymity in exchange for honesty.

I will publish the results, both here and, if interesting enough, at Vitae.

As I said almost a year ago - we can't fix most of the problems in higher ed very easily. They run deep, they tie into big issues in our society, and they involve millions of dollars.

But this one just takes an act of will. We can solve it tomorrow. Let's solve it tomorrow.


Tuesday, September 16, 2014

Disabilities and Identity - Spectrum, not Binary

Today I have a new piece on CNN about Kanye West. I build on yesterday's blog post, expanding my argument that the Kanye West's behavior is a magnified celebrity egotistical version of the kinds of skepticism and suspicion faced people with disabilities all the time. In the piece, I write:
Reaction to this incident throughout social media and in numerous publications was swift and condemnatory. West, in return, lashed out at the media. But in fact, although West's celebrity magnifies the story, the bigger issue here is that his demand that his fans prove their disability is entirely typical.

Every day, in every context, people with disabilities get challenged to prove how disabled they are. This constant questioning isolates people with disabilities, increases stress and shame, and can lead directly to verbal or even physical abuse
I finish the piece with these thoughts:
Thanks to the Americans with Disabilities Act, to claim disability is to ask for reasonable accommodation -- accessible buildings, more time on tests, audible formats for books, Social Security disability payments, and more. Too many people seem to regard the request to accommodate as a burden and meet such requests with suspicion. The not-disabled exercise their privilege by demanding that people prove their disabilities; then, all too often, proof just generates pity, not understanding or inclusion.
By demanding everyone rise, by calling out the disabled members of his audience even as he grudgingly tolerated their inability to stand, West was being totally normal. If you think what he did was wrong, remember that the next time you are tempted to stare down someone walking from a handicapped spot at the grocery store. Remember that the next time someone managing pain can't make it into work. Remember that the next time a student needs a little more time on a test.
One key takeaway from the piece, I hope, is the understanding the disability is not a binary. People are not either perfectly disabled or perfectly abled. Rather, we are all at the most temporarily abled, moving in and sometimes out of states of disability throughout our lives, or even just in a single day as we expend whatever strength we have and then need accommodations.'

I like to think about disability, especially physical disability, as overlapping spectrum that people might move along it as conditions change or just when they've used up all their spoons (read about the "But You Don't Look Sick" spoon theory here, it's a useful analogy). It's more complicated for intellectual/development disability because one doesn't want to normalize "typical," but that's a topic for another post.

That's not how our culture sees it. That's not how Kanye West sees it. For them, you are either disabled or not. You can't need accommodations just some of the time, in such a perspective.

But that's not how disability actually works. And everyone who has ever been sick or had an operation knows this. Disability works in many ways. An inclusive society accepts all of these ways and tries to build an accessible world, for whoever, whenever, under whatever circumstances.

Monday, September 15, 2014

Kanye West and Testing Disability

A few weeks ago I wrote a blog that was pretty widely read and shared (compared to my other posts) on the "Pencil Test" for disability. It focused around a man flung to the ground by Florida police, to see if he was really disabled or just faking it.

There's actually a lot of discourse on faking disability lately, from Bieber in a wheelchair at Disney to George Takei mocking disability and a desire for liquor. We question disability, wonder who is parking in the wheelchair spots who then gets out and walks, scowling at those folks who pick up their social security checks, and so forth.

To claim disability is to ask for reasonable accommodation, and some folks just seem to hate that idea, or at least regard it with intense suspicion.

Moreover, the privilege of the abled is, under almost any circumstance, to demand a person prove their disability, whether psychiatric or physical. 

And now there's Kanye West.
The setting was the Qantas Credit Union Arena in Sydney, Australia, and Westreportedly announced, “I can’t do this song. I can’t do this show until everybody stand up… Unless you got a handicap pass and you get special parking and shit. ‘Imma see you if you ain’t standing up, believe me, I’m very good at that.” Then came the foot-in-mouth moment. Most of the fans got up and boogied, but soon West spotted a pair of concertgoers who’d remained in their seats, and refused to continue the show until they stood up and danced like the rest. One of those two singled-out fans raised a prosthetic limb, thereby proving that she did in fact “get special parking and shit,” to which West replied, “Okay, you fine.”
West then homed in on Fan No. 2, who was still seated. He stopped performing the tune “The Good Life” and declared, “This is the longest I’ve had to wait to do a song, it’s unbelievable.” The crowd was reportedly trying to clue Kanye in to his epic blunder, with the entire section making wheelchair signals with their arms. But to no avail. West sent his bulky bodyguard Pascal Duvier into the crowd to confirm that the seated fan was, in fact, in a wheelchair. When it was confirmed, West said, “He is in a wheelchair? It’s fine!”
There's approximately 4 million posts up now on this incident, all of them focused on West being wrong and way out of line.

West is being totally normal. This is what we do. We shame. We examine. We demand to see proof. And then, grudgingly, so grudgingly, first we accommodate, then we shame those who questioned, shame those who were slower than us to react, and elevate the person with the disability onto to the Inspiration Pedestal.

There's a lot of focus in the posts on fan #2, who had to prove he was in a wheelchair to a bodyguard.

I'm thinking of #1, who had to HOLD UP HER PROSTHETIC LEG to prove herself disabled enough to be "fine."

That's the pencil test - intrusive, revealing, demeaning, dehumanizing.

Sunday, September 14, 2014

Sunday Roundup - Boycotts: NFL, GoFundMe, University of Illinois


Get it? It's a roundup! 
Today is Sunday. I am not watching the NFL. 

For me, being a football fan was a major part of my identity, one that intensified with the advent of Fantasy Football. As the concussion scandal intensified, I began to scale back my engagement with the game. First quitting fantasy, then we moved the TV upstairs in a (failed) attempt at less screen time for the kids, so I just didn't have the games on all Sunday.

You can say, as someone did on my Facebook wall, that my moral compass is lacking because I didn't stop watching football earlier, but it's hard to shed pieces of your identity. I was a fan. 

The domestic violence issue - not just Rice, but the people who beat women NOT on video tape who happily are playing today, followed by the Adrian Peterson story of beating his child with a stick, has made me finally turn off the NFL. I cannot promise I won't turn it on again, but not today.

My feeling is that the NFL enables a culture of violence, through its embrace of pain and fear as motivations, it teaches that pain and fear of pain is how you solve problems: With kids. With spouses. With each other. The NFL glorifies violence and it shouldn't surprise anyone that the violence extends outside the stadium. I have no idea what they can do about it, either, so I'm not watching.

Not watching is different than demanding a boycott. I think it would be good if everyone in America turned off the NFL for an hour on Sunday. I have no expectations that will, or can, happen. I'm not saying what ethical decision you make if you turn on football today, but I hope more people think hard about it.

Other boycotts have a better chance of effect.

I will not contribute to any GoFundMe campaigns started after 9/9/14 until they treat abortion the same way they treat all other personal medical procedures. 
Now this pledge I think you SHOULD make. I'll write more about it this week and try to drum up more awareness about the problem.

I also wrote three posts about Steven Salaita and the boycott of UIUC: Reactions to his press conference, which I attended. Thoughts on duality of the position of Israel as a superpower and the Jews as an oppressed minority, which I think lies at the hearts of our debates about whether Salaita is punching up or down.

Finally, I am crowdsourcing information on how the final rubber-stamp approvals work at universities with which many of my readers are associated. I said:
I am shifting my attention to an issue on which I think we can all agree: Final approval for a job cannot take place weeks after a professor has started his or her classes.
Can you please, in a comment, in an email, on my public facebook thread, or even on twitter tell me the timing of your final reviews for new hires at your school? I need to get a sense of how common this kind of delayed rubber stamp is.
I think this is really important and now is a moment we can focus on these practices and, at least in some case, change them.

Finally, I had a brief Q&A with John Scalzi on his newest book, last Monday. Feels like a long time ago before all my writing descended into this fairly grim place. Yay interesting speculative fiction. Reading fun stuff - Now that's a good way to spend a Sunday.