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Life After Paralysis is a blog that represents a variety of paralysis community members. It is a place for open conversation about the issues and the interests of people living with paralysis, their family, friends, caregivers, and the professionals that serve them. Comments are welcome!
 
The opinions expressed in these blogs are the author's own and do not necessarily reflect the views of the Christopher & Dana Reeve Foundation.

Change Agents In A Time Of Scarcity

Many of us – myself most definitely included – spend a lot of time cataloging all the hardships that the world puts in the way of our ability to experience a full and fulfilling life. And much of that finger-pointing is directed to government agencies, federal, local, and state. But what if those agencies, especially the ones who dole out money, not longer existed or existed only in a much-reduced capacity? I was inspired by a recent column by my distinguished colleague, Michael Collins, to think about this. Michael was writing about the cutbacks in public transportation in Seattle which will hurt the two most overlooked groups who need public transportation the most: the elderly and people, especially poor and working people, with disabilities. The cutbacks, as he explained it, border on cruel.

Obviously this is a genuine political crisis and needs to be corrected, as do many other disability issues: the huge disparity, for instance, between disabled and non-disabled employment figures; the pigeon-holing of kids with disabilities in schools; inadequate funding for badly-needed support services; and a basket full of equally important disability-centric matters.

Obamacare aside, a true anomaly, it looks like we are well into an era where large-scale public initiatives like the above will be curtailed or eliminated. This is happening all over the Western world. Massive cuts in social services are the trend in countries like France and Germany. Those poor French might be forced to take less than their 30-day annual paid vacation. Sacre bleu!

If this is short-term, then those who depend and thrive on those services will have to brace themselves and wait for the storm to pass. But if is an historic change, where does that leave both the people who can’t afford needed services and those who can? It would be a new age of “personal responsibility “ – which translates into “every man for himself and his stock portfolio.”

Is there a way of fighting for a fair shake that goes outside of political gamesmanship? I really don’t know, but I’m pretty sure change can come from anywhere. Kareem Dale , associate director of the White House Office of Public Engagement and special assistant to President Obama, once said, in reference to employment of people with disabilities, “Thing won’t really change until the person in the corner office is disabled.” That person will not get there by government edict. It will take a truckload of personal gumption.

I know it’s the hard conservative rant that people with disabilities are weakened by the government support and should learn to live by their own wits, just like the rest of us taxpayers have to do, if you don’t count, say, Medicare, Social Security, unemployment insurance, the FDA, the FAA, and the like. If the government money for social services was there, different story. But, by all accounts, it’s not there.

This is clearly an issue that I can’t fully address here, or probably anywhere, but I see two problems that might alter things, however slightly. One is to figure out a way to organize the disability community beyond just ad hoc one-issue campaigns. The “disability community” is a whole bunch of fragmented single disability groups (the MS people don’t talk to the deaf people, etc.) and has few informal communal support mechanisms – no bars, no social clubs, no soft ball leagues, no annual pride parades, nothing that draws people together for just interaction, let alone political purpose. On the 20th anniversary of the ADA, Sam Maddox, the Reeve knowledge manager, organized an event in the LA Dodgers parking lot to try to beat the Guinness record for most wheelchairs in single line. It drew hundreds of wheelchair users and sparked hundreds of conversations. Plus, it was a heck of a lot of fun. This is the only such gathering I’ve ever attended.

Behind the dearth of a social nexus, the problem that keeps coming to mind is visibility, or more accurately, invisibility. You see “special” people with disabilities on heartwarming segments of evening news, but few regular people with disabilities in the mall, the park, the farmer’s market, i.e., outdoors. Besides bumping up against others with disabilities just living their lives, there are all those non-disabled people who are nervous around you mainly because they rarely encounter you. It’s like Midwesterners who are afraid of gays because they’ve never actually met and talked to a gay person. Familiarity doesn’t breed contempt; it breeds social ease.

I have no grand schemes, just the conviction that people with disabilities are further disabled by their own isolation. If government support shrinks or disappears, who do we have to depend on? The answer is: ourselves.

Posted by Community Admin on Jun 16, 2014 3:20 PM US/Eastern

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