Real Social Change Is Hard

Posted by Allen Rucker in Life After Paralysis on January 27, 2016 # Health, Mobility

We are the change that we seek.Of all the problems facing someone who is paralyzed – physical, emotional, and social – I think that social perceptions, and self-perceptions, are the thorniest. At least in my cases, physical problems are largely reduced to skin breakage and infection. In your case it may be neuropathic pain or vascular complications or persistent UTI’s or simply not enough energy to get out of bed in the morning and live your life. Whatever your accompanying affliction, medical science is probably catching up with it. Emotional problems can be huge – anxiety, depression, acrophobia, panic attacks – but there is, in many if not most cases, some relief for these conditions. I take Zoloft and Wellbutrin daily and find them remarkably effective in mitigating my own ups and downs.

On the other hand, the social dimension of disability -- how the world sees and defines you – seems stuck in the past.. The common wisdom is that things have changed radically in this sphere in the twenty-five years since the passage of the ADA. Especially those who were disabled before the ADA and fought for its passage applaud what they perceive as sea changes in the accessibility of public space and the increasing acceptance and inclusion of people with disabilities in public life. I became disabled after the ADA, so maybe I take for granted the fact I am generally accepted on a one on one basis, for which I am grateful, and that I don’t have much trouble getting in and out of places or even on and off airplanes. I complain about the latter, for sure, along with a whole list of inconveniences, but compared with a wheelchair user in Mumbai or Burkina Faso, that’s all they really are – inconveniences.

On a larger, society-wide scale of acceptance and inclusion, I guess I see the glass half-empty. Active in Hollywood, I see the same picture, year in and year out -- a mere smattering of characters (and performers) with disabilities out of hundreds and hundreds of fictional characters on TV and film. One such performer makes a splash – Peter Dinklage on “Game of Thrones” or Michael J. Fox with his own sitcom (that didn’t make it) – and it appears the problem is fixed or headed toward getting fixed. But that’s either tokenism or the extraordinary talent of one performer and doesn’t much change the image of the disabled projected by the biggest image maker in the history of man, Hollywood. A high school kid in a wheelchair will seldom if ever see him or herself as just another goofball in a network sitcom or the can-do professional in an episodic drama. It’s just not happening with enough regularity to have an impact.

Hollywood, despite all the conservative scorn heaped upon it, is not a bastion of liberalism. The most glaring example of this is the much-talked-about all-white Oscar nominations this year, and last year, and most years. Chris Rock calls it “the white BET Awards.” Year after year, there are diversity committees and diversity outcries and prominent black leaders traipsing to the offices of studio moguls to demand change, and nothing much happens. Occasionally one brilliant person can alter the landscape slightly. If the mega TV producer Shonda Rhimes -- “Grey’s Anatomy,” “Scandal,” “How To Get Away With Murder” -- decided to call it quits, how many strong, central black characters would remain on TV? And the film industry apparently has yet to find its Shonda Rhimes.

The point is, if black actors and directors and story-tellers are still struggling to be invited to the Hollywood party, where does that put people with disabilities on the guest list? Both blacks and other marginalized groups, like women, have been at this decades longer than the disabled. Consider that only one woman in the history of the film industry has won an Oscar for directing. All of this has something to do with the fact that the Oscar-giving academy is largely a bunch of old white men. The US Congress, by the way, is 80% male and 80% white, and the average age of a Senator is 60. I’m just saying…
The question is, does Hollywood invisibility translate into broader invisibility? Maybe blacks and the disabled and even women don’t need Hollywood exposure to gain power, status, and respect in the world at large. It may not be the biggest factor, but it doesn’t hurt. Look what Hollywood visibility has done to the image of transgenders (“Transparent”) or gay marriage (“Modern Family”). If nothing else, it’s given both the light of day.

Trust that for the next few years, if you are disabled, you probably won’t see your story on TV. This will certainly change but it’s hard to put a due date on it. Meanwhile, you have your friends and family and community to encourage you to forge ahead, disability be damned. And you have yourself. There is no stronger advocacy that self-advocacy. What was Obama’s catch phrase? “We are the change that we seek.” Sometimes even bumper sticker slogans can point the way.


Purchase Allen's book:
The Best Seat in the House:
How I Woke Up One Tuesday and Was Paralyzed for Life

The National Paralysis Resource Center website is supported by the Administration for Community Living (ACL), U.S. Department of Health and Human Services (HHS) as part of a financial assistance award totaling $8,700,000 with 100 percent funding by ACL/HHS. The contents are those of the author(s) and do not necessarily represent the official views of, nor an endorsement, by ACL/HHS, or the U.S. Government.