Rights are hard won, yet easily lost when we are not vigilant.
The fears stoked by this coronavirus pandemic can push us to succumb to the demands of a stumbling government that is tripping over itself while ensconced in feeding us contradictory misinformation. What impact will the pandemic have on how we see ourselves, our communities, and how we relate to each other? Will there be more justifications to selectively allocate economic, social, and medical benefits? Finding someone or thing to blame allows us to continue to ignore a culture that rewards and favors individual avarice at the expense of community needs. Attributing blame for this crisis enables the privileged to feel safer and provides a rationale for discrimination.
Although the virus is in theory one of equal opportunity, we see the usual suspects having the highest infection rates: The elderly, people with disabilities, those confined to psychiatric facilities and nursing homes, the incarcerated in jails and prisons, the homeless, and the disempowered minorities that live at the bottom of our socio-economic system. Primarily, what those who are disproportionately infected share is congregate living, the worst of which is in institutions, but also highly vulnerable are those who are living in overcrowded apartments, shoddy homeless shelters or on the street. It is too easily said that their immune systems are compromised, or that they are not following the recommended behavioral guidelines while we ignore the economic and social structures that are responsible for their compromised immunity. Historically, in our collective past, it was reassuring for the masses to understand the scourge of plagues as divine punishment for immoral behavior.
Like many of the psychiatric survivors who follow Mad in America, I know that nearly everything can be taken away from us. Our health, dignity, self-respect, memories, and our capacity to critically think. Even our rights to own the reality of our experiences are subject to misappropriation. I choose to think that the soul or spirit has the capacity to hide when necessary in protected sanctuaries deep within us and can re-emerge when given the opportunity. We cannot sheepishly forfeit our rights and allow discrimination based on the supposed “vulnerability” of certain designated groups.
Are we truly in a war, a war with an invisible enemy? Borrowing from the classic statement of President Franklin Delano Roosevelt during a fireside chat about a different war, “The only thing we have to fear is fear itself.” In the past I found that statement to be comforting but I find myself reflecting on what it means to me now. Is fear really the enemy or is it a signal to look at how I am living? What rights am I willing to forfeit in order to soothe myself with an illusion of control and safety? Are they really rights, or as the late great comedian George Carlin riffed, “You don’t have rights, you have privileges and privileges can be taken away?” I pose a question to myself and others, how can we oppose and combat the erosion of our rights in this time of fear and authoritarianism?
In a search for clarity I offer Martin Niemoller’s classic teaching poem with an important edit of who were first.
First they came for the useless eaters (disabilities) and I did not speak out because I had no disability.
Then they came for the Jews and I did not speak out because I was not a Jew.
Then they came for the Communists and I did not speak out because I was not a Communist.
Then they came for the trade unionists and I did not speak out because I was not a trade unionist.
Then they came for me and there was no one left to speak out for me.
Consider who are the least valued and most vulnerable. The New York State Department of Corrections and Community Supervision, in an attempt to reduce the jail and prison population, will release certain low-level offenders with the exception of those with mental illness. The Urban Justice League launched a petition for organizations to sign. The petition begins:
Dear Governor Cuomo:
New York State must stop warehousing people with serious mental health concerns in prisons and jails. As COVID-19 threatens to spread like a wildfire through these facilities, people with mental health disabilities must be included in the State’s efforts to release vulnerable people and reduce the total jail and prison populations. We are appalled that in implementing your directive to release people incarcerated on technical parole violations, the NYS Department of Corrections and Community Supervision (DOCCS) categorically excluded people with serious mental health concerns. This blatant discrimination against people with mental health disabilities is shocking.
The mainstream media pundits are preparing us. They speak of the new normal, telling us that life will not return to what it was before the war with the coronavirus—What does that mean? Am I willing to be driven by fear and passively accept the loss of privacy, an increase in the division between those who have much more than they need and those who have barely enough to survive? The newly configured decision-making algorithms have been designed to determine who is worthy of our supposedly limited resources, and who is shunned or punished for not adhering to rules formulated by the wealthy, powerful and politically connected. Who will we choose as the deciders, those who will tell us whether someone with a disability or a “vulnerability” or advanced age has a quality of life worth sustaining?
I think often of the powerful statement made by Justin Dart, the acknowledged father of the ADA:
I adamantly protest the richest culture in the history of the world, a culture which has the obvious potential to create a golden age of science and democracy dedicated to maximizing the quality of life of every person, but which still squanders the majority of its human and physical capital on modern versions of primitive symbols of power and prestige. I adamantly protest the richest culture in the history of the world which still incarcerates millions of humans with and without disabilities in barbaric institutions, backrooms and worse, windowless cells of oppressive perceptions, for the lack of the most elementary empowerment supports.
I call for solidarity among all who love justice, all who love life, to create a revolution that will empower every single human being to govern his or her life, to govern the society and to be fully productive of life quality for self and for all. I do so love all the patriots of this and every nation who have fought and sacrificed to bring us to the threshold of this beautiful human dream. I do so love America the beautiful and our wild, creative, beautiful people. I do so love you, my beautiful colleagues in the disability and civil rights movement.
More here about Justin (https://abilitymagazine.com/JustinDart_remembered.html).
Will we be facing forced segregation under the flag of protecting the vulnerable? Will we be tracked by tattoos attesting to compulsory vaccinations that have been too quickly wheeled out without a genuine evaluation of efficacy? As has been suggested in Germany, will passports be used to determine and track who is eligible to return to work? Will our cell phones be used to track compliance with whatever the government deems necessary? The call for everyone to be tested for the virus does not acknowledge the different levels of accuracy for tests that vary in their accounting for the number of false positives and negatives. Are we being encouraged and/or pressured to suspend our critical thinking? At what point do we give up our individual freedoms, our right to choose for the collective Good?
I am currently Executive Director of MindFreedom International (MFI), an organization that has for more than 30 years been devoted to fighting for the rights of people who are forced to undergo psychiatric treatments regardless of their objections. To maintain the integrity of our mission we accept no government funding and are supported by membership and donations. We advocate for the right to choose psychiatric services or reject services we believe are not in our best interest. We attempt to inform the public and challenge the misinformation about psychiatric treatments. To oppose the rampant abuse of rights, we developed the Shield program (https://mindfreedom.org/shield/). When we activate a Shield alert, we rely on our members and allies to write letters and make phone calls to local newspapers, government officials and the treatment team who are in control of making decisions. We have learned that we can make a difference when those in charge see that what they are doing is subject to public exposure. Moved from operating in the dark, changes are much more negotiable when it is recognized that a person has community support.
MFI has been looking at the rapid changes that are occurring in psychiatric facilities and other congregate living settings. We have learned that at Connecticut Valley Hospital, similar to other facilities around the country, no visitors are allowed. According to one inpatient, changes include not being allowed to go outside for fresh air. She told us that patients are given one mask that they are required to wear for an entire week. I wonder what is explained to the residents about the coronavirus and the reasons for the new restrictions.
Until now, our focus has been on those who are working through psychosocial issues, or more plainly, problems in living their lives. We are also supportive of families who have found mainstream treatments harmful and who inquire about person-centered alternatives. Today, I am aware of the need to expand our impact by joining with others whose rights are under threat.
Liz Moore, writing in the March 18, 2020 issue of Rooted in Rights, in the article Disabled People Are Not Simply Dispensable During a Pandemic:
“In a recent article about the financial impact of COVID-19, The Telegraph went so far as to say, “From an entirely disinterested economic perspective, the COVID-19 might even prove mildly beneficial in the long term by disproportionately culling elderly dependents.” It didn’t take long for this outbreak to bring out eugenicist arguments. The use of the word “culling” here is particularly disturbing. As a disabled person who might be disproportionately culled, it is easy to despair at this situation.”
If we are going to have a chance of maintaining our rights we must have, a powerful VOICE, one that joins with other oppressed groups. We need to work with organizations like Surviving Race, Drug Policy Alliance, and others that look at our sisters and brothers who are incarcerated, who are homeless, who are penalized because of race, gender, disability, or sexual orientation. A friend reminded me of the rallying cry of the AIDS coalition, Act Up, “Silence=Death.” We must look at what we have in common rather than our differences. Our numbers need to swell so that we can attain influence. The demands we make must be clear and able to be accomplished. I think of the canary in the coal mine when I say we represent the hope for changing how we relate to each other and saving our home—mother earth.
The question that is presently unanswerable is whether this crisis will stimulate progress or regression. I choose to believe that it is an opportunity but that we must fight to make it happen. My dream: To build compassionate communities where people who look, act, or think differently are supported in ways for them to develop their innate potential. That each of us has value and that we learn from each other’s strength and weakness, where we are all able to have safe, affordable places to live and enough wholesome food to sustain good health. During this time of crisis, we could learn and accept that we are all connected and begin to value the power of compassion. I hope that now is the time for us to push the envelope to make the so necessary changes we desperately need. All of us need to ponder what we are willing to risk and perhaps stretch a bit to overcome identity politics and allegiances to tribalism.
David Oaks, the founder and longtime force behind MFI, said recently at our biweekly Shield meeting. “Now, we are no longer the 5% minority, we are the 100%.” We are all in this together. If it is truly 100% I am hoping we find new creative ways to unite and push in the same direction.
Mad in America hosts blogs by a diverse group of writers. These posts are designed to serve as a public forum for a discussion—broadly speaking—of psychiatry and its treatments. The opinions expressed are the writers’ own.