By Darma Canter
After two years of advocating within Michigan’s publicly-funded local and state Independent Living program, I should have been more prepared for the new President, his loose interpretation of history, as well as facts in general, and his presumption of authority. I should have seen the government moving away from the people and public service, and investing power and authority in the service of corporate entities. Still, every day since January 20, I wake up to the unexpected, shocking new reality.
I have spent a lot of time, too much time, thinking in the last three months. What is the role of government? What is the fundamental nature of democracy? How are units of government, their programs, policies, practices connected to the people? What is my role and responsibility in a democracy, and what responsibilities does the government have to citizens, to tax payers, and to me?
What is the people’s business? How does the public hold its government accountable to act in the public’s interest? These questions are surprisingly hard to answer. The 2016 election results seem to indicate not everyone agrees on the answers – or even the questions themselves.
Independent Living is a political movement developed by disabled individuals to address the social and environmental policies that limit our freedom to fully engage in the benefits of society. Prior to the 1960s, citizens with disabilities were institutionalized, dependent on charities, and viewed as politically irrelevant. No Medicaid, Medicare, SSI, no right to education or employment, no guaranteed right to participate in government services or activities. There were no public funds for Independent Living in the community because those state dollars went to life-long institutionalization. Literally, the “insane and feeble-minded” were dropped off at the hospital door and left for decades. No one was expected to leave alive.
Fifty years ago, this was the reality of disabled lives in America. Building on the civil rights movements of the 1960s and 70s, the disability community began gathering on college campuses and in cities to build a grassroots political entity focused on changing the long history of discrimination of disabled citizens. Our lives didn’t change overnight, but we are living with the accomplishments of 20 to 30 years of advocacy by and for our peers with disabilities. Our network of CILs across the country was formalized and funded in the amended Rehab Act in the early 1990s, but the IL philosophy of consumer run, self-help centers belonged to the people, and the historical changes produced by collective political action must still belong to the people.
We, the disability community, are on the verge of another shift, but not one of our making, and it may very well be one that undoes the changes we fought for. The systems that many people use to live and to participate as full members of the community, had lots of shortcomings, but I don’t think the new Administration will be reforming systems to our benefit. The new Secretary of Education didn’t know disabled students have the right under federal legislation to a free and appropriate education. The new Attorney General has a troubling history of voting against the ADA. The new Secretary heading up the Medicaid programs has a strong preference for block grants to states with fewer mandates, and we will likely be forced to justify independent living supports economically. I am afraid for myself and my people.
So how will we, the disability community, protect our essential civil rights and health services? 600 CILs across the country can help to gather and inform the 56 million disabled individuals about policy issues and advocacy strategies. But critically, it is the millions of informed voters with disabilities that must manage and shape the programs and policies they rely on. This is a time to act on the issues experienced almost exclusively by the disabled. Centers for Independent Living and their constituents will have to debate what issues and actions they will commit to for years ahead.
Many Centers for Independent Living may want to protect their revenue from state and federal budget cuts, but at what cost? If Michigan CILs and SILC defend the rights of consumers and protect essential community-living supports, they will become pertinent to the disabled. If Michigan’s Independent Living system scrambles to maintain their identity business entities at the expense of the needs of the disability community, they will continue to be irrelevant to the disability community and the IL Movement.