Showing posts with label Followup. Show all posts
Showing posts with label Followup. Show all posts

Wednesday, November 18, 2015

Return Of The "Pool Noodle?"

Photo of a child's feet in sneakers standing on a one-step platform with a while cane for the blind out in front

Just short of a year ago, we read a similar story, about an American school district taking away a young blind boy's white cane because they said he used it to threaten harm to someone. They gave him a semi-flexible foam "pool noodle" instead, and shortly afterwards, gave the cane back to him and apologized for confiscating it. Compared to this British girl, that case seemed like more of a real dilemma. One way or another, safety was at least a bit of a reasonable factor. The disability rights consensus was 1. Don't confiscate a disabled person's main tool for adaptation, and 2. Do make sure that young disabled children are trained in how to use these tools safely and appropriately.

The same formula probably should apply for Lily-Grace, or any kid just starting to use a white cane, crutches, or a wheelchair. Nobody is saying she's reckless with the cane, but she's seven years old, and there's a method to using a while cane. You don't automatically know what to do with a cane just because your blind and they had you one.

Both situations underscore how small disability-related problems get out of hand when one or two people with some sort of veto authority get antsy about anything unfamiliar going on in their professional territories. It gets worse when they happen to have a personal preoccupation with certain aspects of disability life. It may sound strange, but there are people who have very firm opinions about the use and abuse of white canes, crutches, ramps and elevators, and wheelchairs ... not to mention service animals. And they absolutely do not see it as ableism in its purest, simplest form. I suspect the officials responsible for both of these crises felt that they were the only ones with the good sense to raise concerns and put the brakes on well-meaning but carelessly permissive policies. Couple that with administrative procedures that handle contentious issues too slowly and deliberately, and you get, I think, maybe 75% of the news stories about ableism that make it into the mainstream press.

It's so galling when it is happening, that it's easy to froget that most of these situations are resolved more or less properly in the end. Blind kids get to use their white canes in school. Customers can, usually, enter coffee shops with service animals without it making the local news. Most people don't regard ramps and elevators as expensive luxuries, at least once they are fully installed. But in the meantime, massive time is wasted futzing around with pointless deliberations when the eventual outcome is rarely ever in real doubt. This is where a bit of autocracy can actually be a good thing. We need more school principals and headmasters who are willing to say, "I appreciate your concern, but unless there's an actual problem, blind students will be able to use white canes ... or whatever they need ... in our school. That's the way it's going to be."

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Thursday, July 16, 2015

Throwback Thursday

Two years ago in Disability Thinking: Remembering The Pakleds.

I recently re-watched "Samaritan Snare.”

Ooof, it’s pretty awful. I think the writers meant well. I think they were trying to make some kind of bland point about underestimating people you assume are weak or incapable. But the portrayal is so insulting that any good is undone. Ultimately, you have a fictional alien species transparently crafted to display stereotypes of cognitive impairment. You have lines clearly intended to be mildly comical. You have our good Starfleet officers responding with a veneer of patience, just barely hiding irritation at having to deal with these obviously stupid humanoids. Hardee har, har! You have to work awfully hard to pull a positive message out of all that. Just check out the comments to the video below.

The episode is worth watching though, if only to be reminded that good intentions don’t guarantee good disability depictions.



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Wednesday, July 15, 2015

#DisabilityStories

Erin Blasco - July 14, 2015

Blue box that says “#DisabilityStories July 15, 20150” with a pointing hand symbol.

I will be spending most of the day dipping in and out of this huge Twitter event, marking the 25th Anniversary of the Americans with Disabilities Act. It’s organized by the National Museum of American History. Click the link above for a good summary of what it’s all about and how to participate. Click here to see a schedule for the day.

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Friday, May 22, 2015

Airline Incident Followup

Autistic Self Advocacy Network - May 21, 2015

Last week’s discussion about the autistic teenager and her family being kicked off an airliner frustrated me on two levels.

First there were the commenters who seemed to mold and manipulate this particular  incident into their preconceived ideas about overly-demanding special needs parents inconveniencing everyone else in pursuit of unrealistic accommodations for an annoying child. The fact that the flight attendants ended up providing what the autistic teen wanted in the first place, which means they could have done it right away without argument, didn’t matter to people intent on making the obvious point that an airline can’t meet every conceivable need.

Second, nobody seemed to share my concern about the teenager’s mother, (who I think was right in her advocacy), using negative stereotypes of autism to try to get what she was after. On reflection, I think she may not have been as insulting and harmful as it sounded.

Throughout the dialog … in news articles, blogs, Twitter, and Facebook … I kept wondering what the Autistic Self Advocacy Network would think. I am pleased to see that once again, ASAN has presented an issue in a strongly worded but well-reasoned press release centered on a useful response … asking the Department of Transportation for clarification of the applicable law, the Air Carrier Access Act. This is more than expressing outrage. It might actually help.

It can’t be said enough. The Autistic Self Advocacy Network is the most articulate, effective, and authentic voice for autistic people in the country, possibly the world. If you have any interest in autism from any angle and aren’t familiar with ASAN’s work, you are missing out.

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Friday, May 8, 2015

Apple Followups

Photo of a vintage Apple Macintosh computer
A couple of months ago I blogged about possible disability uses for the new Apple Watch. It looks like folks are finding unexpected uses already:

Max Plenke, News.Mic - May 4, 2015

Also of note, well-deserved recognition for Apple’s VoiceOver, just one of the many accessibility features installed standard in all Apple devices.

Buster Hein, Cult Of Mac - May 6, 2015

I’m honestly not on Apple’s payroll. It’s just that I’ve been using Apple things since the late ‘80s, and I’ve met many disabled people who swear by their accessibility tools.

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Saturday, April 25, 2015

Hospital Blogging! Part 4

Hospital icon on the left, moving wheelchair icon on the right
Or, “Tiggers are wonderful things!"

Just to double down on something I mentioned a couple of days ago ...

One way to tell you’re recovering from hospital-level illness is when you start caring again about things you stopped caring about for awhile. For instance, putting on pants and a t-shirt instead of just underwear and a hospital gown. Being a very small guy, I had to wear a gown with Tiggers all over it, and I have to admit, I kind of dug it because Tigger is one of my favorite of the Winnie the Pooh-via-Disney characters. I’m tentatively due to go home Monday though, so it’s time to begin gradually re-upgrading my general living standards. It feels good.

I think I’ll save the shave until I actually get home.

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More hospital blogging:

Hospital Blogging!
Hospital Blogging! Part 2
Hospital Blogging! Part 3

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Tuesday, April 14, 2015

Netflix Makes A Good Decision

Icon for Audio Description for the blind
Tracy Wright, Netflix US & Canada Blog - April 14, 2015

One good thing about terrible, self-sabotaging decisions by high-profile corporations as that they can usually be reversed very quickly, with the right kind of targeted advocacy. This appears to be a great start, and I am especially glad Netflix won’t stop with just Daredevil.

Congratulations to all the bloggers and petition signers who helped make this happen. And biggest thanks to the folks at the Accessible Netflix Project, who have been working on this literally for years.

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Monday, April 13, 2015

Accessible Netflix Petition

Photo of Daredevil character, in black suit with mask over most of face, in front of nighttime NYC skyline
Petitioning Netflix: Make Daredevil Available to The Blind Community ... Change.org.

I rarely post two items in a row on the same topic, but this “Daredevil” accessibility issue with Netflix is the Platonic Ideal of a disability advocacy issue:

- Netflix still won’t provide Audio Description for the blind for its new “Daredevil” series … or any of its other shows for that matter.

- “Daredevil” is a TV adaptation of a Marvel Comics superhero who is blind.

- A CNBC story says that it costs between $1,000 and $5,000 to provide Audio Description, the amount depending on length of a show. That seems like a lot of money for you and me, but for Netflix? Come on.

- Netflix’s non-response response, after almost 3 years of advocacy, suggests that there’s no real opposing view here. It’s just apathy and neglect. That is sadly typical of disability issues, where the most common enemy isn’t opposition, but indifference.

- The issue is important to blind people in a very direct way. It is important to all disabled people as a matter of principal and precedent. Yet, it is not so important or complex that it scares off people who don't like getting involved in advocacy with intense emotions, a steep learning curve, and a lot at stake.

Please sign the Change.org petition, Tweet it, and Facebook it.

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Friday, March 27, 2015

Let's Be Complainers



Nobody actually likes a complainer, even when they're right. That's one reason why relatively few disabled people ever actually complain in a meaningful way.

We should never feel bad about making informal and formal complaints about poor accessibility or disability discrimination. Complaints are not lawsuits. I’m not suggesting they are pleasant, or that a business you file a complaint about will be totally cool with it. They’ll probably be offended and hurt. But later they may be a little embarrassed, and that’s a good thing. We need a little more shame and feelings of inadequacy in business and local governments when it comes to ADA compliance. In most cases, the worst thing that will happen if you file a complaint is that someone will get a stern but informative notice from the U.S. Department of Justice. The won't be fined or go to jail, and it may not solve the problem right away. But the Justice Department gets a better picture of compliance around the country, and ADA violators will know that they are noticed.

By all means, try to work it out person-to-person at first. Point people to the resources easily accessible online on how to make buildings more accessible, and how to accommodate workers with different kinds of disabilities.
If you run into people who have still never heard of the ADA, (theyre out there, believe me!), or who wildly misunderstand what it says, direct them to the easy-to-remember "www.ada.gov.
And if you dont get a reasonable response, go ahead and file a complaint, using the new, (this month!), Justice Department online complaint form.
Dont forget the customer review” option. There are at least two online databases where you can rate the accessibility and responsiveness of any business that can be mapped. Try one or both of these two sites:
I feel very strongly that ableism wont go away on its own, through everyone becoming more aware. We have to make it go away, and we have the legal and informal tools to do it. The only thing really holding us back, I think, is our own hesitation. So lets all quit complaining, and start filing actual complaints.

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Tuesday, March 3, 2015

Followup: 2015 Day Of Mourning

Alice Wong, Disability Visibility Project - March 3, 2015

This address by Alice Wong, at one of Sundays Day Of Mourning 2015 events, is heartbreaking and empowering all at the same time. Its always tricky to imply, “My life is pretty great so yours can be, too,” but we’re talking about life and death here. Those three kids weren’t allowed to even try.

I still dont have much appetite for punishment. But the contrast between what life with even the most severe disabilities can be, and how hopeless these killers and the news media just assume it is, shows just how far apart and confused we still are about the nature of disability. Its a vital reminder to the disability community that disability awareness, so easily trivialized, really is important. Somehow, weve got to penetrate the brick wall between people with disabilities who are happy and glad to be here, and the parents, professionals, and news media who think disability equals suffering and hopelessness.

Lives literally depend on it.

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Sunday, February 8, 2015

Followup

Anne Grunsted, The Mighty - February 6, 2015

I am posting this as a followup to last weeks item on parents of disabled kids meeting  or not being interested in meeting  disabled adults. Ms. Grunstedencounter was by chance, not design. Maybe that makes it even more valuable. I also want to note that personally, I would probably shy away from overly arranged meetings. Organization tends to introduce artificiality. Arranged meet ups don’t bother everyone though, and I do think they are far preferable to the current situation … where parents of disabled kids, and adults with disabilities, seem to occupy parallel, never overlapping worlds.


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Monday, January 26, 2015

More Thoughts On Education

3-D stick figure of person with graduation cap, seated on top of a stack of books

As I think back over all of the interactions I have had with disabled students and their families, I realize that most of the complaints and traumas the students, themselves talked about were about how they were treated by people … teachers, counselors, and fellow students … and relatively little about the curriculum itself being too hard. I mean, I’m sure that most of them also experienced a lot of frustration over the content, too, but most of even those complaints were about botched or denied accommodations, not about the material being “above” their cognitive ability.

Quite a few parents, and a lot of teachers, worried about whether it was cruel to hold more disabled students to “higher standards”. There was this very prevalent idea that it was somehow self-evident that some unspecified percentage of Special Education students were simply incapable of getting a regular diploma … and the percentage was aways inching upward.

I almost never heard students, themselves, complain about higher standards. One might argue that perhaps they didn’t have the vocabulary or conceptual understanding to make complaints that specific, but in my experience they had little trouble being specific about their other complaints.

Also, I can’t think of a single disabled student who ended up worse off or more unhappy because they took more tests or were more fully integrated in more demanding classes. But I can think of scores of kids and young adults I met who were definitely worse off than they needed to be, in part because teachers, counselors, and families thought school should be “easier” for them.

This is all anecdotal of course, based only on my personal memories which may also be faulty. Still the pattern is striking.

So although I’m still ambivalent about stuff like “high stakes” testing, and I don't necessarily trust schools to make good decisions about accommodations, I generally feel an instinct to stick up for more rigor, not less, in education of kids with disabilities.

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Friday, January 23, 2015

Sunday, September 14, 2014

"Red Band Society" Followup

Picture of an old style TV set with the wheelchair symbol on the screen
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.

Sunday, September 7, 2014

Disabled TV Character Survey - Update

illustration of a stick figure standing on a paper survey, using giant pen to check survey boxes
Some favorites are starting to emerge in the Disabled TV Character Face-Off. 16 of the 32 characters in the initial survey have votes, and a few of those have quite a few … most notably, Dr. Gregory HouseSheldon Cooper, and Walter White, Jr.

That’s only based on 9 people taking the survey, though, and I would like to get at least 20 peoples’ votes before setting up the character one-on-one “face off” brackets.

So, if you haven’t voted already, please do … just click here!

(P.S.: It occurs to me that I should probably say that this survey isn’t a marketing tool. Nobody will get your contact information for any purpose. I have no way of knowing who voted, unless you say so in the comments. It’s just an opinion survey … nothing more).

Another Podcast Update … And Request

Picture of sharpie pen writing the word HELP! in black capitals on white paper.
I just finished a Skype discussion with Maddy Ruvolo, one of the co-founders of the Disabled Girls Talk podcast, about the disabled characters in Friday Night Lights. It was so much fun and comfortable, and the results so much better than my solo reviews, that I may stop doing solo reviews entirely.

I have tried five times to record my podcast episode on the new Ironside, and I just can’t get through it. Not because the new Ironside is a complicated show … it’s definitely not,  or because I don’t know what I think about it ... it’s a pretty straightforward show. I just think I do better talking about TV shows and disabled characters with someone.

Which leads to my request. I do eventually want to do a podcast on the new Ironside, so I’d like to find someone discuss it with me, using Skype. If you watched any of it last fall, you’re ready to go. If not, you can watch it on your computer using Hulu.com. I can’t pay you, but I will be happy to promote your blog, podcast, Twitter feed, or whatever you have that you would like to promote to an audience interested in disability issues.

It’s fun! And despite my struggles with it, the new, late, lamented Ironside is fun to talk about. If you’re interested, just send an email to: apulrang@icloud.com.

Sunday, August 31, 2014

Disabled TV Character Face-Off - Survey

Photos of disabled TV characters: Robert Ironside, Addie Langdon, Artie Abrams, Jewel, Joey Lucas, Capt. Pike, Tyrion Lannister, Dr. Kerry Weaver, Corky Sherwood
Following up on yesterday’s post, here’s your chance to help start the Disabled Character Face-Off. The top 16 of these 32 characters will compete in a “bracket” style elimination tournament, to determine the best disabled TV character of all time!


Create your free online surveys with SurveyMonkey , the world's leading questionnaire tool.

Tuesday, August 26, 2014

The Ice Bucket Challenge ... What's Next?

Building front entrance showing accessibility features
The other day I pretty much telegraphed that I wasn't going to argue about the Ice Bucket Challenge, and I'm sticking with that, more ore less. I have an idea though.

It's sort of a followup to the Ice Bucket Challenge that answers some of what bothers me about it, without contradicting or refuting it. Maybe if we find the right social media strategy it will catch on. Here's the idea.

We ask everyone who has participated in the Ice Bucket Challenge for ALS research to take an additional step ... a pledge that they will never again knowingly patronize a business that isn't fully wheelchair accessible.

Many people with ALS are wheelchair users. Encountering barriers to full, free mobility is one of the daily hardships of having ALS. So, in addition to helping fund better treatments for ALS, those who would also take the Accessibility Pledge would be helping people with ALS live better lives through equal access to their communities. One thing I like about it is that It sounds easy to promise, but it would force people to realize how difficult it actually is to stick with, because so many places are NOT wheelchair accessible.

It's also perfect for celebrities, because of the power they and their friends have to make an economic impact on businesses.

We could try to come up with a similar stunt to go along with it, but I don't think that would be necessary. We would be targeting people who have already done the Ice Bucket Challenge. We want to piggyback, not copycat. We want to say, “You have shown you care about people with ALS. Here’s another way you can help."

The first step is probably a Twitter hashtag, and maybe some parallel Facebook action, making sure to target celebrity Ice Bucket participants by name.

So, how about it? Can we get influential people to take the #AccessibilityPledge?

Wednesday, August 20, 2014

More Disability Podcasts

Icon illustration of a radio microphone and ear bud earphones
Here are three more disability-related podcasts I’m exploring:


A terrific podcast on reforming Special Education, with a strong pro-inclusion orientation. Many of the episodes are interviews with education experts and inclusion advocates. The podcast is hosted by Tim Villegas, who runs the Think Inclusive website. I recommend starting with Podcast #010 How Long Can We Wait For Inclusive education?, featuring Tim's interview with Dr. Cheryl Jorgensen. Their conversation ends up being a strong and complete introduction to the central question facing advocates of inclusion ... why are kids with disabilities still so often educated in segregated settings?


This is a British podcast similar to the BBC's "Ouch!" show, but with somewhat more emphasis on disability policy in the British government. My tentative though on listening for awhile is that UK disability policy is simpler and less layered than in the US, but not easier, or even much better for disabled people. The podcast also covers aspects of disability culture and practical adaptation.


I have only listened to one episode ... Jane Hash's interview with the creator and star of "My Gimpy Life", Teal Sherer ... but I'm hooked already. Jane is a great interviewer and picks great guests to talk with. Her style is pretty straightforward, but with a bit of an "alternative" bite. Even if you don't immediately get some of the "in" jokes and references to disability community notables, it's easy to get into the spirit of things with Jane and her guests. So in a way, the podcast is another good introduction to at least part of the disability culture community.

All three podcasts are available to subscribe in iTunes.

I'm still looking for even more active disability podcasts. If you know of another one, or are thinking of starting one, let me know in Comments or by email.

Tuesday, August 19, 2014

Two Disability Cultures - Followup

Ideas topic icon
Another reason why there are different disability cultures is a fundamental difference in how we see our disabilities.

Some of us see our disability as a disease. Others of us see it as something like an identity.

Put another way:

Some of us fight our disabilities like others fight cancer, or leukemia.

Others of us incorporate or add our disabilities to our personalities, like an ethnicity, or a subculture, like being a Hipster or a Geek.

This is almost the same thing as the Medical Model vs. the Social Model, but not quite. The Medical and Social Models of disability are attempts to define and locate the problems with disability. What Im talking about his how disabled people live day to day with disabilities, and how they relate to them  as an enemy, or as part of our personalities.

Even though I usually approach disability as an integrated part of myself, I often have to deal with it as I would deal with a serious normal people illness”. No matter how well I have integrated my disability into my life, and adapted to it, and no matter how well my community accepts and accommodates it, sometimes, it just plain hurts. Sometimes, it absolutely interferes with my plans, and there is nothing I can do about it. It’s times like these I do wish I could fix it … or at least shave off some of my disability’s sharper corners.

At the same time, it really does break my heart to see other disabled people treat their impairments like diseases. I don’t have a problem with organized efforts to improve treatment and, with some ethical reservations, prevention. But I hate to see what it does to disabled individuals, especially children and youth. Most disabilities are simply not aptly compared to diseases. They aren’t invaders. Most of them don’t kill you. And in most cases, you don’t “beat” disabilities, you adapt, which calls for a very different attitude and approach.

Maybe this isn’t such a big deal. Maybe the language of fighting disease is just more familiar to people, so it’s a handy metaphor misapplied to disability for want of an alternative. When people with disabilities, and their supporters, talk about “overcoming” or “beating” their disabilities, maybe they really mean adapting, succeeding, or finding happiness. But I think language shapes our thinking, as well as the other way around.

That’s why I think it makes a difference how we talk about our disabilities. It’s why how we talk about our disabilities does tend to sort us into distinctly different disability cultures.