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Disability

NEW IDEAS ARE DIFFICULT

The following article was submitted for publication to the Baltimore Sun on December 29th, 2015.  It’s difficult to say, in under 750 words, anything that has nuance or depth, but, I did feel as though we should try to alert our Baltimore Community that this very unique project is seeking funding and the challenges we face.:

“I am from the minority called disability. It’s a complex group, some disabled from birth and most as adults, and if your disabilities are mental, nobody knows you have it just by looking. Unlike being a racial minority, everyone wishes the best for us. Our road to hell is paved by the good intentions of the nondisabled. You care. You pat us on the head and tell us to be strong, how brave we are, how amazing we are, and how impressed you are when we smile. Unfortunately, all this misplaced compassion, however kindly meant, really doesn’t empower us to live our lives or raise our families.

The IMAGE Center of Maryland, based in Towson, is working on a project that will literally change the lives of over 600 million people with disabilities throughout the world at a cost of under five million dollars, but, ideas that don’t fit neatly into our preconceptions, also don’t fit into existing funding mechanisms.   The IMAGE Center doesn’t see disability the way you probably do. We see much of disability as a tools and techniques problem rather than a limitation you must learn to accept. What the woman paralyzed wants to know is, “How do I get my life back?” How do I raise my kids, drive the car and get back to work?” And unfortunately, there isn’t any place on the web for her to see people just like her do these simple things. She can go on the web and search for “wheel chair cooking” but think about it for a moment. Being in a wheelchair doesn’t really tell you much about her. How much leg movement does she still have? Can she stand some? Can she move one leg but not the other? And, how much arm or hand use does she have? Some fingers on one hand but not the other? Left arm but not right? Each of these is important if she’s really going to see people who are solving the problem she needs to solve.

Recognizing this, the IMAGE Center is developing an online web sharing and search tool so she can see people, dozens or hundreds of them just like her, successfully living their lives and how they do it.   Think about everything you know how to do. You learned it by observing and imitating. That’s the way humans learn. Unfortunately, most people with disabilities, whether temporary or permanent, have never seen anyone like them and how they solve daily life problems. So, hundreds of millions of people throughout the world struggle to make a life without the essential of imitation.   With the modern web it is possible to create a video sharing site where people can specify their exact set of limitations and see dozens or hundreds of people just like them and how they create solutions for everything. We call it the Aging & Disability Skills Gateway. Check it out at: www.disabilityskills.org   For most of us, disability means care. Disability means less of a life except for those few who succeed that we regard as heroes and amazing, not realizing that these are just the creative few who can make up a life without that all essential roadmap of people to imitate.

Medical professionals want to cure us. Disability professionals want to care for us. The press wants feel good stories about the disabled hero overcoming all odds, or pictures of the ice bucket challenge, while ignoring the actual challenges of the disability itself.   Slowly we are making progress. A recent TED talk profiled our project as one of the three primary challenges of disability in the 21st century.   We here at the IMAGE Center leave 2015 frustrated. We know that out there somewhere are people who see disability as a problem to be solved. We know there are those of you out there who will join us as we create this new vision of disability. But for the moment, like other minorities, we still feel like the power structure and those who work in it are well intentioned yet misguided.”

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