It is not incumbent upon you to finish the job, however, neither are you
free from doing all you can to complete it. Rabbi R.Tarfon
As an unreconstructed advocate for advocacy I cheer when elected officials “see the light”, when they muddle through the logistics, when they listen to the people, when they rise above personal gain to work for legal justice. And so I rejoice this year as we celebrate the 25th anniversary of passage of the monumental Americans with Disabilities Act. Experience tells us that well begun is just half done – and so we embrace the next challenge.
Legal justice has been done. To a great extent American institutions have followed the requirements as defined by law. We have ramps and bathroom stalls and elevators, a host of highly visible indicators of legal compliance with the law passed a quarter century ago.
And yet we sadly pause to reflect when Tim Benjamin, editor of Access Press, writes that “there is a crisis in the disability community and it been going on for years.”
Benjamin writes with passion about a harsh – and hidden – reality:
Over the years, dependency without support has created a sense of learned helplessness for many in the disability community. Too many people are in fear of not getting any of the care they need if they speak out. For too many, persistent attempts to control the uncontrollable become too difficult. Hope for the right public policies has its limits; wishful thinking about better luck with the next agency or next PCA is not a sufficient strategy. For some, believing there is nothing can be done to change the situation leads to resignation: “This is the way it is.”
What’s so difficult is that there are many people with disabilities who are employed and pay taxes, who are assets to their community, and are now, because of changes in federal health care law, facing the real potential of having to give up their jobs and their autonomy. These rule changes are compounded by a workforce crisis because of low wages and high demand for personal care assistants. If this catastrophe is not resolved, we may see hundreds or thousands of productive citizens having to move from the community into long-term care facilities—where the next catastrophe could occur. “over the years, dependency without support has created a sense of learned helplessness for many in the disability community. Too many people are in fear of not getting any of the care they need if they speak out. For too many, persistent attempts to control the uncontrollable become too difficult. Hope for the right public polities has its limits; wishful thinking about better luck with the next agency or next PC is not a sufficient strategy. For some, believe there is nothing can be done to change the situation leads to resignation.” http://www.accesspress.org/blog/2016/05/10/editors-column-may-2016/
Bottom line, Benjamin asks ”What was the point of the ADA and in Minnesota, the Olmstead Plan, creating laws for community integration, for educational and job opportunities, transportation, accessible facilities and public infrastructure, when people with disabilities don’t have staff to get them out of bed? What were all these millions spent in the first place?”
The fact is, the vast majority of us, know far too little about the physical and political barriers faced by those we do not know or even see in our daily lives. We are disinclined and ill prepared to assess the needs much less to take action.
We leave concerns of people with disabilities to the individuals and their families and to advocacy groups who are immediately involved. If the law needs to be amended, it falls to them. If enforcement of the law is overlooked, we are unaware and politically impotent. We assure ourselves that engagement with the needs of people with disabilities will land us in a complicated legal and regulatory conundrum best left to the “disabilities community.” Besides, aren’t we just this year celebrating that this fight for justice has been won.
The fact is, acronyms notwithstanding, the concerns of challenged colleagues are basic human needs. If we have the will to understand, the tools are at the ready. A couple of starting points:
- Best Life Alliance, for example, is a readily accessible digital resource (http://www.arrm.org/ARRM/Advocacy/Best_Life_Alliance.aspx
- Or make it a habit to pick up Access Press on free newsstands everywhere. Better yet, subscribe online at http://www.accesspress.org/subscribe/. It’s a great read for anyone who thinks and cares about disability rights, including the inalienable right to access to information.