Power Grid Blog
Power to the People!
March 4, 2013 | Amber Smock
When AAPD presented me with a Paul G. Hearne Award last March 2012, in recognition of my work as a disability organizer and advocate; few of us could have predicted the extent to which the coming year would have been one of significant crisis, conflict, and change for our community: the federal and state budget crises threatening our independence and empowerment, the restructuring of our nation’s health care industry, the battle to pass an international disability treaty, the murders at Sandy Hook and the national dialogue on psychiatric disability, challenges to Olmstead and the ADA, and on and on…
As Director of Advocacy at Access Living, part of my job is to interpret and communicate these events through a disability lens, so that both grassroots and grass-tops activists can see opportunities to push for change that benefits all people with disabilities. As I look back over my past year as a Hearne Awardee, a constant pattern of my work involved telling people what they did not want to hear. However, the responsibility and moral obligation, of a good organizer is to bring people together in the face of adversity and to act.
For example, the number one request for help that we get at Access Living is help finding affordable, accessible, integrated housing. The demand far outweighs availability. Nobody wants to be told, “we don’t have a place for you right now.” Yet I am proud this year that my Access Living colleagues and I worked with the National Council on Independent Living’s Independent Living Research Unity to help coordinate training for advocates on how to push for more housing opportunities for our community. All the captioned videos from this training can be viewed here.We had an amazing lineup---check it out!
Another thing that people did not want to hear is that budget cuts will affect their in-home services and there is no money, whatsoever, to make the situation better. For the last few years, this has been a significant problem in many states. This past year, in the face of yet more budget cuts, I facilitated the Protect, Invest, Enforce and Strengthen (PIES) Home and Community Based Services Coalition. Members included CILs, SEIU, the AARP of Illinois, and others. We worked together to defeat a proposed change to the state’s assessment tool, that would have denied home services to thousands of people. We also staved off significant budget cuts and actually won an increase in wages for workers.
A third thing that people don’t want to hear (and I certainly don’t) is that insurance does a terrible job of covering needed items like hearing aids. While insurance will cover the cost of cochlear implants and their surgery, hearing aids are not covered; though they are relatively less expensive. I can guarantee you that tonight people across the country will be sitting at their kitchen table wondering how they will come up with thousands of dollars to pay for a new hearing aid. In the face of this problem, right now I am working with advocates in Illinois to help push two bills that would require private insurers to cover hearing aids up to $2,500 per ear every three years for all ages.
Being a Hearne Awardee brings the benefit of name recognition in the community, thanks to years of important work by past Hearne Awardees and by AAPD itself. I learned that when you are introduced as an awardee, people pay attention. This is a form of power and it helps you ask people to come together. However, holding power has always reminded me that its twin is humility. The awards are made thanks to the judgment of respected disability community members. When I received the Hearne Award, I felt it belonged not just to me, but all the people in my community, along whose side I fight.
Power and humility: when I advocate for change, I do it because I believe that the 600,000 people with disabilities living in Chicago deserve liberation from judgment and barriers set up to keep us at the bottom of society. I believe we deserve freedom and self-determination, regardless of our skin color or ethnicity, regardless of our age, regardless of our working status, regardless of our income, regardless of our citizenship status, regardless of our gender or sexual orientation, regardless of whether we live in the streets or skyscrapers. The battles we win, one by one, in Chicago, are also battles I know are being fought in other places by brothers and sisters in our community. I know that we are not alone. Our movement is real.
In contrast, sometimes the crises we have faced this year have felt like a Martian invasion. Access, freedom, pride, and equality for people with disabilities are absolute values. They should have nothing to do with politics or money. And yet, as our nation continues to rip off the Band Aid covering the problems with our political parties and our economy; more people are engaging with hard questions about the real meaning and value of people with disabilities. Whether or not their questions are logical and justified, our job is to get to where decisions happen and make our stand.
I could not have known, standing on the stage at the 2012 Gala, how hard my colleagues and I would have to fight in the coming year against budget cuts, political logjams, quicksand rulemaking, and flat out ignorance. The key thing to remember in the face of this kind of adversity is that we have to do it together; that adversity is a gift, a test. Adversity makes us realize that there should be no “us” versus “them.” There is only us, and WE are the ones who make our movement happen.
Congratulations and best wishes to the 2013 Hearne Awardees, George Gallegos and Dr. Anjali Forber-Pratt. There is no way we can continue our movement as individuals: we are all in this together. Power to the People!
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