This month I have two things to talk about. One is not surprising: a livable wage for personal care attendants. The other is related and timely: the celebration of the ADA’s anniversary.
America’s Independence Day has just passed. I value my country’s democratic freedoms, and the Fourth of July always provides a good reminder not to take them for granted. But the independence at the top of my list of concerns is the personal independence of people with disabilities. Many of us are wondering about our independence and whether or not we will be independent tomorrow, next week or next month. How long will we be living independently in our communities? Independence Day commemorates the Declaration of Independence, and all that it says about our country’s valuing of human freedom. Many great philosophers, a few of them my favorites, wrote about ways to maintain civic independence years before the Declaration of Independence was written. Thomas Hobbes (1588–1679), John Locke (1632–1704) and Jean-Jacques Roussea (1712–1778) talked, debated and wrote about the social contract. The idea is that we have to voluntarily give up some rights or natural freedoms to obtain protections by the government from crime and mistreatment in our society. The social contract limits our freedoms (we can’t, for instance, enslave others) and asks us to give up a portion of our income or wealth to support the government. In turn, the government makes and enforces laws to maintain our protections from victimization, neglect, theft, sexual assault or any vital threats to our independence. The government also commits to helping us achieve our common goals of life, liberty and the pursuit of happiness.
Like most members of society, for me to pursue happiness I have to get out of bed in the morning and contribute to my family and community. But I cannot get out of bed without the help of society in the form of PCAs. As American citizens, people with disabilities have the right to life, liberty and the pursuit of happiness. The government must assure all people that they can enjoy these rights.
Our goal, guaranteed since the Americans with Disabilities Act (ADA) of 1990, has been independence and inclusion. As I’ve written before, for us to enjoy independence, requires society to understand our interdependence. The social contract is all about interdependence. For each of us to prosper we need caregivers; caregivers need jobs caring for us—and they need a livable wage. Our state healthcare systems are intended to join together people with disabilities and senior citizens with individuals who have the compassion, skills and the desire to help people. At a minimum, they do this to keep people out of costly institutional settings like hospitals and nursing homes. Well trained PCAs can also keep us out of hospitals and prevent long-term and extremely expensive health conditions like pressure sores, pneumonia, bladder and kidney infections. It’s likely that with good care we also use fewer medications for infections, stress and anxiety.
For the 26 years since the ADA was enacted, we have been fighting for fair wages for our caregivers. With attractive salaries, we can get reliability, stability and continuity; and with quality training, we can increase the professional competence of caregivers. Access Press was founded in 1991, and some of our first issues included articles about PCAs earning a livable wage with good work incentives. The state’s assistance program has never offered a livable wage. The government needs to step up and figure out a way to pay these incredible caregivers a livable wage, possibly on a ladder of skills that would offer more wages the higher up you go on that scale. These workers should get health insurance through the state like other state employees. We have to make personal care attendant a profession and not just an entry level, low-paying job in which very few people will make a career.
I’ve gotten several phone calls over the last couple months about my columns, asking what people could do to help with the emergency in the disability community. Unfortunately, I don’t know the single best way! I know we’ve spent too much time and energy to give up now. We have to continue contacting our legislators; we have to request meetings with the governor; we have to continue writing our stories and sending the stories to policy-makers, to Access Press and to the advocacy organizations that we most identify with. Ask your care-provider agency to get involved; it’s their livelihood, too. Ask your company’s owner to contact their legislators concerning the reimbursement rate for home- and community-based services, and to write stories about how the reimbursement rate affects their sustainability and their ability to employ good permanent caregivers. We have to organize. There are Facebook pages: one is PCA Connection Minnesota. It was set up for PCAs , PCA clients, and direct support providers. Join that group and help organize others.
Even while all of this is necessary, every one of these tactics has been used before. How can we put down our proverbial foot to make a statement that we are in a serious predicament and need our government’s help, now? Do we stand on the street stating our requests or demands? Do we need to gather at the capitol and park our wheelchairs on the front lawn, or in front of DHS? Should we park our wheelchairs in front of the governor’s mansion? Some of the actions used in the civil rights movement of the early 1960s were also useful in the disability rights movement that began in the 1970s. People with disabilities set a record for the longest sit-in in U.S. history when Judy Heumann led demonstrators for 28 days in the Federal Building in San Francisco, which led to passage of Section 504 of the Rehabilitation Act of 1973. A year later, Rev. Wade Blank and Mike Auberger in Colorado, along with 17 other people with disabilities, blocked Denver public transportation buses chanting “We Will Ride!” to make public transportation accessible. In 1988 at Gallaudet University students held a weeklong protest, the “Deaf President Now” protest. Also in 1988 in a one-man protest, Paul Longmore, an author and disability historian, burned a copy of his book because he could not receive payments without losing his benefits. More recently, in 2005, advocates with disabilities held a protest in the Tennessee governor’s office that lasted 75 days (replacing the record of the HEW take over in 1977), over the massive cuts to the state Medicaid system, Tenn-Care. These actions worked. What does that tell us?
The ADA anniversary celebration is July 26. For my generation, it’s hard to believe it was 26 years ago that we watched the ADA being signed by President George H.W. Bush with Justin Dart and Evan Kamp sitting next to him, acknowledged by Bush as guiding him to make that day a reality. The ADA has five sections or titles, and every one of them describes key provisions of the social contract. If you haven’t read them lately, take a look. These are our rights: non-discrimination and accessibility in 1) employment; 2) public transportation and housing, 3) public accommodations and commercial facilities; 4) telecommunications; and 5) miscellaneous other areas, including the prohibition of retaliation.
See you at the Minnesota History Center on the 26th for the ADA celebration. Don’t forget to say hi!