Sunday, February 23, 2014
Weekly Wrap-Up
Sunday, February 16, 2014
Monday, February 17, 2014
Tuesday, February 18, 2014
Wednesday, February 19, 2014
Thursday, February 20, 2014
Friday, February 21, 2014
Saturday, February 22, 2014
Saturday, February 22, 2014
Paralympian Jessica Long Goes Home
Credit where credit is due. NBC did a wonderful job with the profile of Paralympian Jessica Long, showing her visit with her biological parents in Siberia, Russia. The segment, which just aired, was beautifully done and made me cry. I’m not sure which affected me most, Jessica meeting her Mother, or meeting the now elderly women who ran the orphanage where she lived until she was adopted by American parents.
Jessica also had very meaningful things to say about understanding why her parents gave her up for adoption. They were under age, unmarried, and they felt ill-equipped to handle a child with disabilities. You could see the absolute mix of pain and joy on the Mother’s face when she saw her grown daughter Jessica. Parts of this this world are very harsh places, and people try their best to do what they feel is right. It’s great that Jessica Long got to tell her biological Mother that she understands, and that she loves her.
3 Rebukes To Bullying
I can't believe I'm saying it, but these three videos are inspirational! I mean “Inspirational” for real. Not “Inspiration Porn”, not revoltingly sweet, not begging for sympathy. These videos move me, and have something of substance to say. The second two I have posted before. The first one I saw just today, from a link and recommendation by the founder of the website Shared Abilities.
"Beautifully Different by Charisse Hogan"
This very personal video is the one that comes closest to what I’d call a traditional “Inspirational” video about disability. It expresses a simple, positive message in a heartwarming, non-confrontational way. It has pleasant music and adorable kid drawings. However, several things about this video set it apart and gives it bit of a sharp edge.
The underlying theme, bullying, is anything but cheerful or simplistic. She doesn't hold back from telling about the worst, with specifics.
Charisse’s positivity is totally earned and authentic. She has been through horrible experiences and is recovering, which can’t be easy and should not be taken lightly. Her optimism isn't glib.
The video makes it clear that the horrible experiences were caused by other peoples’ behavior, not by Cherisse's disability. Her understanding of this may be a little bit unformed just yet, but she’s young, and clearly on the path to viewing her disability as a part of herself she doesn’t have to be embarrassed about or ashamed of. I can't avoid being a little personal and paternalistic here. I recognize so much of myself at her age in Charisse. At the same time, like a parent, I want to tell her about all the amazing opportunities for further growth and pride that are available to someone as poised and smart as she appears to be.
"Fucking perfect anti bullying"
When I first realized that Charisse’s video was about bullying, I immediately thought of the “Fucking perfect” video, by an amputee YouTuber who is: a. Around the same age as Charisse, and b. has been bullied and made a video to address that. It is very striking that the messages of the two videos are almost identical, but their approaches are so different.
Using the words of the Pink song, this video is positive but also confrontational. It's not just because the word "fuck" is used. With or without that bit of judicious swearing, it is defiant. I don’t know much of anything about this young woman, any more than I can say I know about Charisse, but I could well imagine that this girl might have both fans and detractors among her high school teachers. Whereas Charisse strikes me as the kind of kid all but the most burned-out teachers love, I can see this young woman pushing the envelope from time to time. Hopefully, there are teachers, family, and friends around her who can appreciate a disabled person who isn't cheerful 24/7, who bites back on occasion.
Neither of these young women is better or more “appropriate" in her approach than the other. In fact, what’s so satisfying is that based on their videos, I like and respect both of them so much, each for different reasons and in different ways. It's a cliche I suppose, but they seem to represent the Yin and Yang of disability pride.
Using the words of the Pink song, this video is positive but also confrontational. It's not just because the word "fuck" is used. With or without that bit of judicious swearing, it is defiant. I don’t know much of anything about this young woman, any more than I can say I know about Charisse, but I could well imagine that this girl might have both fans and detractors among her high school teachers. Whereas Charisse strikes me as the kind of kid all but the most burned-out teachers love, I can see this young woman pushing the envelope from time to time. Hopefully, there are teachers, family, and friends around her who can appreciate a disabled person who isn't cheerful 24/7, who bites back on occasion.
Neither of these young women is better or more “appropriate" in her approach than the other. In fact, what’s so satisfying is that based on their videos, I like and respect both of them so much, each for different reasons and in different ways. It's a cliche I suppose, but they seem to represent the Yin and Yang of disability pride.
"Pro Infirmis «Because who is perfect?»"
Meanwhile, the "Pro Infirmis" video is in some ways a rebuke to a more passive, adult version of bullying … the fear, loathing, and rejection of disabled bodies. More importantly, the video focuses on the fact that even the people who have disabled bodies often subtly buy into the prejudices against them.
I think it helps to know, too, that the participants are all successful professionals in Switzerland, where the project took place. So, each of them, arguably, is already among the most confident, self-actualized disabled people in their communities. Yet, they all are so clearly moved and changed by seeing their mannequins unveiled. For a moment, the hidden wounds of low self-esteem are revealed, then almost almost immediately afterwards healed a bit by seeing and touching the mannequins. As I mentioned when I first posted this video, seeing one of the models actually give her mannequin a hug and a pat just about made me cry. This is sentiment much deeper and more profound that surface sentimentality.
I think it helps to know, too, that the participants are all successful professionals in Switzerland, where the project took place. So, each of them, arguably, is already among the most confident, self-actualized disabled people in their communities. Yet, they all are so clearly moved and changed by seeing their mannequins unveiled. For a moment, the hidden wounds of low self-esteem are revealed, then almost almost immediately afterwards healed a bit by seeing and touching the mannequins. As I mentioned when I first posted this video, seeing one of the models actually give her mannequin a hug and a pat just about made me cry. This is sentiment much deeper and more profound that surface sentimentality.
People of all kinds crave inspiration and empowerment. While I will continue to call out “Inspiration Porn”, I don’t want to become hardened and cynical about all efforts to convey positive messages about disability. It seems like there are certain techniques and themes that make for really moving videos about disability, that are truly empowering and not exploitative or sentimental.
One key I think that I haven’t mentioned is each of these videos was either created by people with disabilities, or featured genuine, candid responses from people with disabilities. They are not passive objects in these videos, they have unique, individual voices. That makes all the difference to me.
Friday, February 21, 2014
The ABLE Act - A Game Changer?
Michelle Diament, Disability Scoop - February 21, 2014
If passed, the ABLE Act would allow people with disabilities to accumulate up to $100,000 for major expenses, without losing eligibility for Medicaid and other benefits that currently depend on keeping assets extremely low. Many of the most important support benefits require keeping any savings below $2,000. This not only prevents people from saving for future needs and major investments in education and adaptive equipment, it also is a major disincentive to people with disabilities attempting to work and earn their own living.
A quote from the Disability Scoop article I think hints that lawmakers who support the ABLE Act now understand something fundamental about benefits and people with disabilities. Sara Weir, of the National Down Syndrome Society says that the ABLE Act would allow people with disabilities to, "go out and get a job and pay for their own expenses and not be so dependent on the federal government for everything.” This is key. It’s not that we would no longer need government benefits for anything, it’s that we wouldn’t need them for everything. Think about what a huge difference that potentially makes.
My worry is that the Congressional Budget Office report will say that this would make thousands more people eligible for benefits, and therefore cost the government a lot more money. We need to prepare to argue either that the cost isn’t that big, or that whatever the cost, it is justified and at least partially counteracted by the increased economic activity of more of us working and paying taxes.
Where does your Representative and Senators stand on the ABLE Act?
Addendum:
Do use the link in the Shared Abilities comment below to find out your Senators and Representatives' positions on the ABLE Act, and to sign the ABLE Act petition.
Addendum:
Do use the link in the Shared Abilities comment below to find out your Senators and Representatives' positions on the ABLE Act, and to sign the ABLE Act petition.
The Sound Of An Australian Accent In Your Head
Stella Young, ABC Ramp Up (Australian Broadcasting Corporation) - February 5, 2014
"Sometimes I just want to go out for dinner with my friends and go to the loo without stressing about it and without having to complain to staff, write emails and consider an inevitably ineffective DDA complaint. I want to go to parties without the nagging anxiety that my access requirements will mean I have to bail early. I want to accept invitations without interrogating my friends."
This is the best written piece about accessibility I have ever read. That is all.
Accessibility Fail
See the full collection of “accessibility fail” photos at The Fault Is In Our Spoons Tumblr blog, via Demonically Disabled.
These botched accessibility features create practical barriers, and are probably the results of poor planning and management. What other messages can we interpret from these “accessibility fails”?
1. Your needs are not important. "We added this feature because someone told us we had to, but it’s not important enough that we put any effort into making sure it actually helps. It’s just a requirement. It says we have to have a ramp. We put in a ramp. Next? Nobody’s gonna use it anyway, you mark my words!"
2. Accessibility is entirely symbolic; it has no practical meaning. "See, we painted the wheelchair symbol on it. That means it’s accessible. And is shows we care!”
Maybe there are other explanations. Maybe we disabled people over-interpet goof-ups or anomalies. Maybe we take things too personally. Well, maybe. But I remember when I used a mobility scooter in college, running across weird spots like these, and I would feel strangely affronted. It really did seem like a message ... You build everything else with such care and craftsmanship, but something that's for me and mine, you couldn't be bothered to do correctly. Got it!
Getting accessibility right is easy. You just have to be willing to do a little bit of research and ask for help.
Getting accessibility right is easy. You just have to be willing to do a little bit of research and ask for help.
Complete, detailed accessibility standards are available on the Internet. Your best bet is the ADA Standards for Accessible Design. Most parts of the standard are easy to understand for anyone with a bit of simple building and repair experience. For an experienced contractor or designer, consulting the standards is a worthwhile backup to their professional knowledge.
Don’t just rely on the standards, though, and don’t assume you or your contractor will know how to apply them. Even credentialed architects sometimes don’t understand the best way to make specific locations accessible. Before you build, ask a disabled person for input. If you don’t know someone with physical disabilities who can help, call your nearest Center for Independent Living. Most of the people who work at them have disabilities themselves, and many of them have staff hired specifically to help homeowners and businesses make places more accessible. They may charge you a reasonable consulting fee, but if you do things right, you should only have to pay for all of this once.
Accessibility matters. The way it's designed and configured matters. In accessibility, good intentions mean exactly nothing ... it is all about practical usability. A publicly opened building or space that isn’t accessible to people with disabilities essentially says, “We don’t care enough to welcome you here. Go somewhere else.” For a business, especially, that’s a deadly stupid message to send, whether you meant to or not.
Thursday, February 20, 2014
Winter Paralympics Schedule
United States Olympic Committee - February 19, 2014
There will be relatively little on-air coverage of the Winter Paralympic Games, but I prefer to see the 52 hours of total coverage as a “glass half full” situation. Most importantly, the link above takes you to very good, easy to decipher charts showing exactly when and where you can watch live or taped broadcasts of each sport. It looks like the Opening Ceremony, several Sled Hockey games, and the Wheelchair Curling Final will all be shown during the day, and that NBC Sports Network will be doing a highlights show for each day of competition. Of course, you can see a bit of everything, mostly on NBC Sports Network, if you’re willing to get up in the middle of the night or super early in the morning.
NBC seems to be completely committed to the “human interest” approach to Olympic sports. It will be interesting to see if covering nothing but disabled athletes induces a full-on diabetic coma in all of the commentators. Or, will they go the other way and depict all the competitors as hard-bitten, fearless bad-asses?
Disability Rights In Russia
I saw this photo earlier this week, on the Disabled People Are Sexy Tumblr blog, and traced it to a Human Right Watch website on the disability rights movement in Russia. I set the photo aside and added the Human Rights Watch links to my link queue to read later.
I’ve been thinking a bit about the perception of Russia, prompted mostly by the Winter Olympics in Sochi, but also by Russia’s recently passed anti-gay laws, and more broadly, by the sort of back and forth confusion in Americans’ attitudes towards Russia I have seen since the end of the Cold War and the dissolution of the Soviet Union.
For one thing, people on opposite sides of the political spectrum in the U.S. have almost swapped sides in regard to Russia. American Conservatives spent the latter years of the Cold War trying to convince Liberals that Russia was the worst country in the world. Not only did they espouse the hated ideology of Communism, but as a people they were supposedly ugly, brutal, and backward. “All they respect is power!” we were told. Liberals, on the other hand, tended to try and reach out to Russia, to appreciate their history and literature, to put the Communist Revolution in historical context. We almost took the human rights problem for granted ... if not quite forgiven, then maybe a little excused.
Now, with Communism gone, some Conservatives seem to have a crush on Russia's current strongman, Vladimir Putin … he’s kind of a bad-ass, I guess. I, a Liberal watch Cossack policemen beating and whipping the brave but obviously unthreatening young women of Pussy Riot and really wonder, in a different way than Sting did in the ‘80s, whether, in fact “the Russians love their children too?”
All of which is just to say that I approached the topic of disability rights in Russia with all kinds of conflicting feelings, not all of them noble or fair. In short, I expected horror stories and ignorance in triple doses. What I’ve seen so far is more complicated.
With about half of the problems mentioned in the article, video, and website linked below … such as "Public buildings and transportation are often inaccessible” ... I thought, “That’s not so different from here in the U.S!” The other half, I thought, “Okay, that’s pretty bad. I don’t think that happens here … much.” We still see segregation into “special” classes in our schools, but a lot more than 2% of them are inclusive, mixing disabled and non-disabled students. And although peoples’ feelings and ideas about sexuality and reproduction can still be frighteningly discriminatory in the U.S., enforced abortion and sterilization are no longer considered anything like acceptable.
Still, the basic landscape and map of issues is pretty much the same in Russia as it is here. They need more buildings and public spaces to be accessible. Education needs to improve. People have negative attitudes towards people with disabilities that result in sometimes shocking acts of discrimination. It all sounds familiar. It’s just that it also sounds like Russia is maybe 20 to 30 years behind us on most things. That’s pretty awful for disabled people in Russia, but I’m not sure it’s boycott-worthy, or justifies any feeling of great American superiority on disability rights.
Except there’s one thing Russia has going for it that we don’t. Russia has signed the UN Convention on the Rights of Persons with Disabilities, and the United States hasn’t.
I have occasionally wondered whether the CRPD really matters anyway, since there is little anyone can do to enforce it in countries that sign it. It might be a cheap way for countries to score “credit” for being progressive on disability rights, without actually having to do anything about them. Having read more about the movement in Russia, however, I think the CRPD provides a valuable tool to compare words with deeds in a country that, leftover Cold War prejudices aside, does seem to have a problem following through on all the details of being part of the modern, democratic, egalitarian world. The CRPD provides a standard for Russia to meet. And, after all, unlike the pronouncements of the U.S. State Department, the UN Convention is something Russia chose to sign, so it will be hard for them to claim that disability rights measures are foreign impositions, incompatible with Russian culture and traditions.
I look forward to learning more about disability rights in Russia, a subject which should really be about people with disabilities in Russia, not about which country can claim moral superiority on disability rights issues. Maybe we’ll learn more when the Winter Paralympic Games start in March.
Tanya Lokshina, Human Rights Watch - August 24, 2012
Wednesday, February 19, 2014
Policy Changes I'd Like To See ...
Just thinking here ...
1. Allow people with disabilities who qualify for home care / personal assistance services to hire anyone they want to provide the services they need. They could hire an agency with lots of screening and training of employees, and that handles all the wages, taxes, and other administrative stuff. Or, they could hire friends, neighbors, college students, people who need work, or even family members … train them, supervise them, fire them if necessary, and pay them with the same money that would have been spent anyway for more traditional models of home care. Pieces of this type of “consumer-directed” personal care model are already in place in various states, but specific policies and practices are all over the place, and in many areas nothing like it is available at all.
2. Replace a lot of the current programs geared towards helping disabled people do specific kinds of things, with an annual grant of money that each person could use for whatever they want. This would be separate from income assistance like SSI and Disability, which is intended to help with everyday living expense for people who can’t work. These grants would be available to anyone with a disability that results in the need to spend substantial amounts on services and investments that non-disabled people never have to make. These could include things like home accessibility modifications, electric wheelchairs, (and / or wheelchair repairs), extra personal care or assistance, (either replacing home care completely, or supplementing it for help that lies outside the purview of home care), or vehicle adaptations. The amount of each person’s grant would be based on some kind of agreed upon list of expenses presented by the person each year, but the money could be spent however the person wanted, and there would be no more available until the following year, no matter what. So, there would be plenty of incentive for each individual to spend the money wisely, on real disability-related needs.
3. Raise the asset limit qualification for SSI and other government support benefits. I would raise it quite high, but I wouldn’t remove the limit altogether. Let’s say $100,000. In other words, assuming your ongoing income is low, you could still qualify for various benefits as a person with a disability if you had up to $100,000 in savings. This would encourage people with disabilities to work when work opportunities exist, and encourage them to save for retirement or anticipated big expenses.
4. Create a disability-based tax credit. This would be one way to deliver an annual benefit payment for major disability-related expenses. Except this would be even simpler and less individualized. Just decide a dollar amount for the credit, set an upper income limit if lawmakers thought that was necessary, (I would set it fairly high), and figure out a way for individuals to prove their qualifying disability. That last bit might be the hardest part of all to carry out, but this is another way to provide consumer-directed support and economic empowerment. It could also be designed so that you could only get it if you worked, making it another way to counteract work “disincentives” and make working worthwhile.
One thing all these ideas have in common is that they involve giving people with disabilities money, as a distinct alternative to giving them "programs". Give us money, and we will buy the support we feel we need, whatever that might be. For what it’s worth, “just giving poor people money” isn’t such a radical idea. A fair number of reputable economists think it’s a good idea. Also, it’s worth thinking carefully about what might be a likely objection to these ideas … variations on the theme that we can’t be trusted to be either honest enough or competent enough to handle these benefits properly. Some of us might, indeed, need some help with that, but do we really want so say that higher material needs means people with disabilities need more paperwork and “professional” supervision?
I think it’s worth thinking about.
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