Why not one more video? “Community” was cancelled today. So, let’s pay tribute to a not very realistic, but completely endearing character with Asberger’s … Abed!
Friday, May 9, 2014
Parts And Service
AmputeeOT asks, why can’t amputees buy some prosthetic supplies on their own, online?
I have run into a little bit of the same problem with certain ventilator supplies. I see the sense in channelling purchases of some items through medical equipment specialists. Some parts are too technical for users to evaluate and select by themselves. But some replacement parts are very standardized and interchangeable, and we ought to be able to buy them at bargain prices on eBay if we want.
A Great Mother's Day Video at Shared Abilities
Charisse Hogan, Shared Abilities - May 9, 2014
The Shared Abilities video linked above … which I will also embed below … forces me to confront a sort of taste paradox.
I don’t like sentimentality. Maybe it’s because I’m a Generation X’er, so my default emotion is ironic detachment. Maybe it’s my ingrained wariness about God-talk. Maybe it’s a guy thing. I shouldn’t like Charisse Hogan's videos, but they always win me over because they say something. By which I mean something that isn’t obvious, isn’t cliché, and hasn’t been said a thousand times before. Charisse has a distinct voice, and that is a either a rare, or a hard-won gift. And let's face it, she's far more adept at video editing and composition than I am. iMovie is the most woefully unused software on my computer.
I’d like to post something myself in honor of Mother’s Day, and I am thinking hard about it. In case I don’t manage it though, I will be happy to let Charisse’s thanks to her Mom speak for me.
Thursday, May 8, 2014
On Disability Etiquette ...
Ross McGuinness, Metro - May 8, 2014
Dylan Matthews, Vox.com - May 8, 2014
First I read the Metro article about the UK-based publicity campaign aimed at improving peoples’ disability etiquette. It seems like a very good, professional, high-quality campaign with good advice that will hold peoples’ attention.
Then I was overjoyed to read the article on the same subject, in the new “Understand The News” website Vox.com. I have been wondering when Vox would get around to dealing with a disability related issue or trend, and Dylan Matthews does a great job of explaining and expanding a bit on the theme of disability etiquette. The title, alone, is perfect and presents the notion of Well-Meaning Ableism beautifully.
I look forward with unreasonable excitement for Vox to tackle a major disability issue with one of their “card stacks” … collections of short “explainers” that break down complex issues into easily understood segments, each one titled with a question phrased as an average reader might ask. I highly recommend exploring Vox.com and some of these card stacks, and see if you don’t agree that the format could be perfect to explain all manner of disability topics.
Ending Ableism: Part 2 - Systemic Ableism
Last Saturday, I started a series of posts offering some practical tips for “Ending Ableism”. My hope is to give people some simple but concrete and effective actions they can take to fight ableism, without necessarily becoming a full on disability rights activist. Saturday I proposed five tips for reducing Well-Meaning Ableism. Today, after a delay due to non-blogging priorities, I have three easy ways to fight Systemic Ableism.
1. Document businesses and other public places that are not accessible
As you go about your daily business and travels, contribute accessibility reviews of the places you visit using online accessibility databases like AXSMap and AbleRoad. Both offer a simple star-based process to record accessibility of entrances, interior wheelchair space, and restrooms, as well as an opportunity to make incidental comments on important accessibility details and the helpfulness of staff. The more places are reviewed, the more useful these databases will become as references for disabled people looking for stores, offices, restaurants, motels that are accessible. It isn’t as confrontational as filing ADA complaints, but they help bring broader consumer pressure to bear for businesses of all kinds to make their facilities more accessible.
2. Only support disability nonprofit organizations that meet the following criteria:
- A substantial portion of their board of directors and paid staff are disabled people.
- They don’t operate “sheltered workshops” or self-contained “day programs”, but instead provide services and supports to individuals, out all over the community.
- If the organization has a jobs program, they pay disabled workers Minimum Wage or more.
- Their publicity and fundraising strategies don't use fear, pity, or sadness about disability.
It is a sad fact that many of the most significant injustices affecting disabled people come from some organizations that are trying to support disabled people. It's another aspect of Well-Meaning Ableism, and because disability organizations involve themselves intimately in our lives, they have more power than most to either remove barriers or place more in our way. Why support a disability organization if it is part of the problem?
3. If you have the opportunity, ask political candidates what specific disability-related policies they support and what they oppose
Bad disability policies emerge more from ignorance and neglect than from hostility. Most politicians have only vague notions of what disabled people want and need from government, and even many savvy political observers don't know enough to ask probing, specific questions about what a candidate's positions on disability matters might be. If there is a particular disability policy matter you care about ... accessibility, special education in your local schools, funding for home care and community-based supports, voting rights for disabled people ... write a letter to the editor or show up at a candidate forum, and ask people running for office what they would do if elected. The more questions candidates get about specific disability issues, the more they will be forced to learn about them, and that will lead to at least more careful, conscious policymaking, if not better.
Wednesday, May 7, 2014
Accessibility Road Trip Followup
About a month ago, I did a blog post about a cross-country trip some college students were planning for this summer, the purpose of which is to document accessibility at hotels and restaurants they encounter on their trip. The group appears to be led by Kunho Kim, who is a paraplegic wheelchair user. All of the group are Harvard students.
I just checked back with the project’s beautiful website, and it appears that they are close to raising their $6,000 goal to pay for the trip. They have also posted their first accessibility review … of a local bed & breakfast. It looks like they will be posting some practice reviews before leaving for their trip.
It is all very nicely done, and the website is very pleasant to visit and browse. I hope that they develop a bit more of a strict rating system, so that it is easier to compare the places they review. Also, I hope they review a variety of different places, with different styles and price levels, including both chain establishments and independently owned motels and restaurants. I do like that their B&B review included aspects of how the staff responded to their accessibility needs.
It seems like a fun and worthwhile project, and definitely worth checking up on over the course of the summer. Plus, imagine how great it would be if this became a trend ... disabled college students road-tripping to document accessibility!
The website is: 20 States On Wheels.
The website is: 20 States On Wheels.
Monday, May 5, 2014
Best Article For Parents
Chavisory's Notebook - November 1, 2013
This is an outstanding explanation of why parents of disabled kids should talk to them about their disabilities. More precisely, it explains, in very personal terms, why it’s a bad idea to deliberately avoid telling kids that they have a disability. The blog post focuses mostly on autism, but almost everything said applies to any disabilities a child might have. Chavisory makes a strong argument that kids know they are different anyway, and that it’s a mistake to think that if we avoid disability words, the disability itself will somehow disappear:
"If what you really fear is that your child will be marginalized or mistreated for being autistic, then fight the marginalization, misinformation, bigotry, and dehumanizing stereotypes with us.”
Sunday, May 4, 2014
Blogging Note
It may be a few days before I can get back to proper blogging, because I am neck deep in a grant application. Stay tuned for a few smaller posts, and expect tips for combatting Systemic Ableism to appear on Wednesday.
Weekly Wrap-Up
Monday, April 28, 2014
Tuesday, April 29, 2014
Wednesday, April 30, 2014
Thursday, May 1, 2014
Friday, May 2, 2014
Saturday, May 3, 2014
Saturday, May 3, 2014
Best Article On Inclusion
Paula Kluth, Richard A. Villa and Jacqueline S. Thousand - ASCD - December 2001 - January 2002
This article was linked in a Tweet from the excellent Think Inclusive website. It is the best article I have ever read on the basics of Inclusion … both the legal requirements and the educational philosophy. Note that it was written almost 14 years ago, but it feels like it could have been written today. Why are we still “debating” this? I also noticed that in the article, parents are assumed to want inclusive education for their kids with disabilities. Yet, it seems like there are still a lot of parents who are as unfamiliar with and confused about inclusion as many teachers and administrators.
The central misconception about inclusion seems to be that it means that all disabled students will be pushed to "keep up" academically with the nondisabled students, which is NOT the point. Some disabled kids probably do need the bar raised higher, but that is a different issue. Inclusion is about equal integration and participation, not necessarily equal performance.
Read the whole article … it’s very good!
Ending Ableism: Part 1 - Well-Meaning Ableism
In a post from last month, I explored the problem of Well-Meaning Ableism. Here are five ways you can help:
1. Speak about disability plainly, concretely, and specifically
Forms of the word “disability” are your safest bet when referring to any kind of unspecified physical or mental impairment. When referring to individuals, it is probably best to say “person with a disability”, although more and more of us are gravitating towards “disabled person” as our preferred term. Steer clear of more elaborate words, phrases, and spelling that seem like they were designed by committees to make disabled people feel better. Avoid “differently-abled”, “disABILITY”, and “special needs”. Of course, you should also avoid terms that are especially negative, like “wheelchair bound”, or “suffers from …”. No matter how you feel about “banning” words, “retarded” is by now just an insult, and you should never use the term again unless you have to quote someone. Disability terms should be accurately descriptive, and should not be weighed down with either negative or positive value judgments. Just speak neutrally about disability matters.
2. Don’t focus on our disabilities, but don’t deny them either
Look, but don’t stare. Don’t fixate on our disabilities, but don’t ignore them. Healthy interest is fine. Morbid curiosity is offensive and easy for us to spot. Most of us don’t like to talk about our disabilities all the time, and we all have interests that are at least as interesting if not more than our disabilities. At the same time, it’s problematic to tell a disabled person, “I don’t think of you as disabled”. The intention may be good, but the fact is that disabilities are real, they have an impact, and they are woven into our lives. You can’t really “see past” our disabilities, any more than you can "see past" the red-colored threads in a multicolored carpet. In any case, literally forgetting we have disabilities can pose real problems, too … like when a group of friends decides to go to a restaurant that isn’t wheelchair accessible because they forgot to consider that one of them uses a wheelchair.
3. Let pictures speak for themselves
This advice is meant to address a fairly narrow phenomenon, but one that has become a large part of the average person’s exposure to disability ideas … disability photos and slogans in social media. It is usually photos of a disabled person doing something either athletic or otherwise surprising compared to a conventional idea of what disabled people can do. These photos are usually accompanied by an “inspiring” slogan that underscores the value we are supposed to take from the photo … courage, perseverance, faith, triumph of the human spirit, even the reality of miracles. Sometimes, the message is also a backhanded slap against negative values such as laziness, selfishness, and self-pity. “This quadriplegic is painting a beautiful picture with his mouth … what’s your excuse?!” It is something of a trend, and a regrettable one. Some of us call it “Inspiration Porn”. The problem isn’t so much the values being extolled, it’s that we become icons and symbols rather than people. Our names don’t matter, and there’s no way of really knowing much of anything about the person in the photo. They rely on the us believing that disabled people mostly live lives of suffering and hardship … that’s why the photos are so awesome! At the same time, it is helpful for disabled people of all kinds and styles and personalities to be visible in popular culture. So, one solution is simply to show the photos but leave out the slogans. Let viewers interpret what they are seeing. It’s much better to prompt people to think freely about images of disability than to cram a packaged “message” down their throats.
4. Don't assume you know who is and isn't disabled, or what someone's disability is
It happens every day. A person with a disability that isn’t immediately visible parks in a handicapped space, and a well-meaning defender of the disabled gives them a dirty look, or worse, because they assume the person isn’t disabled. A child with a learning disability needs extra help in school, and people sneer and complain that their day, “bad kids” weren’t just labeled “disabled” and given special privileges. An adult with an unusual gait and impaired speech is spoken to as if they were 5 years old. A restaurant manager thinks it’s her job to decide whether a dog is a pet or a service animal. There is no one solution to these situations, all of which are harmful and insulting when they occur. The main message is to be careful and open-minded in developing your knowledge and opinions about disability. Disabilities are more than just wheelchairs and guide dogs. There are as many different kinds of disabilities as there are people with disabilities, and pretty much any “rule of thumb” you come up with to generalize about disability is going to fail you. Disability isn’t a club or a profession, and it is no-one’s job to police membership.
5. Listen to disabled people
The classic example of this is a wheelchair user waiting to cross at an intersection. A stranger approaches and asks if they need help crossing. The wheelchair user says, “No thank you”, but the stranger insists, grabs onto the chair, and starts wheeling the person across the street. This type of situation often has a second phase, in which the wheelchair user shouts, “I said no!” or “Stop!”, and the good samaritan takes offense at being yelled at and having his generosity rejected. The whole scenario, and others like it, point to how subtle stereotypes of disabled people rob them of agency. Even people who feel friendly and charitable towards disabled people often find it hard to deal with them when they act differently than expected … when they have individual wishes, desires, and opinions of their own … when they aren’t appropriately grateful. Another related problem is when people try to fathom the mysteries of disability through every means at their disposal, except asking disabled people and trusting their answers. This happens a lot with doctors and hospitals, which already have a built-in vigilance about “noncompliant” patents, which seems to intensify when the patients have long-term, underlying disabilities. But it also happens in other settings. Basically, our adult competence and rationality seems to always be one or two short steps away from being discounted, as if having a disability somehow makes us more susceptible to fantasy and self-delusion. You don’t have to check all of your skepticism at the door. Just remember that most of us do know what’s going on with ourselves, even if the things we report sound incredible, and even when communicating with us is difficult. Being routinely consulted, listened to, and believed would for most of us be a marked improvement in our lives.
Tomorrow: What you can do about Systemic Ableism.
Friday, May 2, 2014
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