#HCSM and Disabilities: Some Case Studies


SL11: IDRAC on International Disability Rights Legislation

Today is International Day of Persons with Disabilities, 3 December 2012. There is a flood of information about it on Twitter, with many hashtags, but the most important ones are #IDPD and #IDPDchat and #IDPD2012.

International Day of Persons with Disabilities, 3 December 2012: http://www.un.org/disabilities/default.asp?id=1597

International Day of Persons with Disabilities 2012

from the United Nations, ENABLE:
http://www.un.org/disabilities/

This year’s theme, “Theme: Removing barriers to create an inclusive and accessible society for all”, is important to me on so many levels, from personal to professional, from advocacy to technology. I’ve been a disabilities advocate, in some ways, ever since I was a child. I think part of it is that I usually have found persons with disabilities to be so kind to others. Also, I was from a poor family, but smart and feisty. Growing up “without” sensitized me to be a fierce and strategic protector of anyone who needed one, fighting playground battles, comforting the wounded, and advocating for those who were excluded. I just never stopped. In my work, the most important part of a job has always been the opportunity to make a difference in the lives of others. When the web came around, web accessibility was a natural fit for me, one of my favorite soapboxes since the mid 1990s, and I’ve managed to fit aspects of that into every professional position I’ve had since grad school. Of course, I’ve made friends along the way, some of whom are fascinating, talented people with disabilities. Many find themselves unemployed or underemployed, or doing incredible volunteer work to give to others and receive a sense of self-worth. They have so much to offer, and are so seldom given the opportunity to show what they can do.

Then, the personal. Even though I was a disabilities advocate long before my son was born, and before he was diagnosed as special needs, there is nothing like being a loved one of a person with disabilities or having a disability yourself to make the issues vastly more vivid. My delightful son is on the autism spectrum, with co-morbid conditions including physical, sensory, cognitive, and learning. For learning disabilities, what I’ve learned to do is just tell people, “rather than giving you the laundry list, just assume he has every learning disability known to man, aside from the physical ones.” But between the support in the K-12 schools, the support at home, and his own work, he has gotten past most of them. He is at the point where you talk to him and have no idea he has issues.

It is poignant and ironic that my son is so smart and talented, so vivid and personable, so engaging and entertaining, and has accomplished so much to overcome many of the challenges, but he still can’t get past the last big one that still gives him trouble (reduced short term memory). He applies for jobs and never gets a call-back. He gets a part time job, and is fired for the first mistake he makes, rather than working with him on fixing the problem. Many jobs he can’t apply for because of his sensory integration issues, that he literally could not do the jobs. The jobs he’d be great for he can’t even apply for until he demonstrates the entry level skills, which are the ones he can’t do. He is accepted to college, but the school told him that if he followed the graduated curriculum protocol recommended by their own disabilities office that he forfeits in perpetuity the right to the standard scholarship for students at that school. We’re working on it, and hope that will change after a formal review by the school.

But those are the barriers — a long, long line of Catch-22 situations, one after another. Those Catch-22s are actually pretty typical for persons with disabilities. What I wanted to talk about was how social media, and its potential for self-advocacy and engagement, has empowered my friends and my son.

Virtual Abilities Grand Opening:

This is one of my friends, Gentle Heron / Alice Krueger, who started working with social media and virtual worlds at a point where she was pretty much completely homebound. Since then her work there as an advocate for persons with disabilities has brought her awards, grants, contracts, and flight to DC to consult with military brass about uses of these technologies for returning veterans. Wowsa. Do you think just maybe her talents were being underutilized before?

The image opening this post is from one of the many educational events held on the space she helped found, Virtual Ability. Gentle-Alice will be the first person to tell you you doesn’t get the new social media, but she knows it is important and depends on others who work with her to make that happen. Virtual Ability has a blog, Facebook page, Twitter account, with many many videos in Youtube. Gentle might not get the how of social media, but she definitely “gets it.”

Virtual Ability: http://www.virtualability.org/

Second Life: Healthinfo Island: World AIDS Day 2007 - Wheelchair

Nick Dupree: About – Activism Successes: http://en.wikipedia.org/wiki/User:NickDupree/About#Activism_Successes

This is Nick Dupree, shown here in Second Life where he is known as Namav Abramovic. Nick describes himself as “a 30 year-old disability rights activist, writer, seeker.” Nick is ventilator dependent, saying, “I can’t use a keyboard, nor lift my hands at all. I type with my thumb on a trackball mouse (I can only use the long-ago discontinued Logitech T-CD2-6F TrackMan Stationary Mouse, ca. 1995) and I click out text by hitting letters on onscreen keyboard software. Sometimes it takes me hours to type out an article, but this also gives me time to consider my words and extract the best possible writing from myself.” His claim to fame is his successful political and legal campaign to prevent Alabama from cutting off Medicaid at-home benefits for persons living in that state who are ventilator dependent. I’ve heard quite a bit about the horrors and the threat to life itself for persons in that situation. Quite terrifying. There was a fair amount of media attention given to Nick’s efforts, with one of the nicest pieces from NPR.

Nick blogs a great deal, uses Twitter and Facebook (and MORE!), has a Youtube channel with thousands of views, has an ongoing web-comic (which he writes and draws himself, with the two fingers he can use), and is generally a very active social media user.

In Second Life, he was a DJ for years, lining up the playlists, engaging with the audience, and generally having a great time and helping others do the same. I should know, since that’s where I met him, and I’ve danced to his music. Second Life was where he first met his partner, and I will admit, I cried when I watched the video of them exchanging vows. More recently, Nick and Alejandra were endangered by the Hurricane Sandy power outages in New York City. Let’s just say when you depend on a ventilator to breath, being without power is more than scary. It was the social media community that made things happen so that they are both still with us.

UnconVENTional Aid: Helping Nick Dupree, Social Networking Style: http://littlefreeradical.com/2012/10/31/unconventional-aid-helping-nick-dupree-social-networking-style/

Pic of the day - He Made It!

This is my kiddo, the day he graduated from high school! I remember when he was finally diagnosed with Asperger’s what really turned his life around was finding a community of other Aspies in Youtube. They were so happy with themselves and pleased to be who they are that he shifted from almost constant anxiety to being proud of himself. The empowerment was phenomenal. Since then, he’s had several Youtube accounts where he doesn’t so much make his own videos as curate collections of manga and anime, with quite a group of people who like his taste. Eventually he started a couple blogs, one for socializing and another for his weekly anime reviews. He’s developed several online personae, with a few for his gaming and MMORPG activities, and another for his reviews and semi-professional work. The combination of these, and his talents for comedy and voice acting, lead him to create some audio pieces to illustrate his talents in this area, which have lead to offers of unpaid positions both as a voice actor and script writer. But he still can’t get a paying job. Hopefully, that’s coming. I look at the shift in the higher education bubble, new models of online social learning environments, and have mixed feelings about paying for him to attend college. Perhaps, perhaps, social media is the better path for him to work towards a career. We’ll see.

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One response to “#HCSM and Disabilities: Some Case Studies

  1. Pingback: #HCSM Review December 5th Edition | Dispatch From Second Base

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