“Prisons Without Bars” – Forced Institutionalization of People with Disabilities

Jody Santos
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I’ve been trying to recall if there was an exact moment when my life began to pivot in a new direction — when the seed of an idea got planted to create a docuseries that would help free Americans with disabilities committed to long-term care facilities against their will. So far, I have released two episodes in the series. The second, now up on YouTube, follows two men at a so-called neurorehabilitation center in Western Massachusetts as they struggle against isolation, aggressive “behavior techs,” and overmedication. One of the men in the film, EJ Schlup, told me he saw patients in a “perpetual state of pharmaceutical stupefaction,” witnessing one man “pass out into his plate full of food, while another had to be verbally guided down the hall using a walker, unable to hold his head up or stay focused.”

Perhaps my motivation to create the #LetThemOut series started when my son was diagnosed on the autism spectrum at the age of three, or while I was filming a documentary for public television in 2015 about the warehousing of people with disabilities in developing countries. Inside a rehabilitation center in Mexico, I saw beds that turned into cages and children with cerebral palsy who’d been “mummified” into submission with bandages and duct tape. When I returned from Mexico, advocates told me about institutions in the U.S. that were treating children and adults with disabilities in similarly abusive ways — sometimes chemically restraining them (using sedatives, antipsychotics, and other types of drugs to control their behavior) and often isolating and neglecting them.

Santos visits a rehabilitation center in Mexico, where children are “mummified” into submission with bandages and duct tape.

In my naiveté, I decided to visit one of these places for the first time a few months later upon invitation from a patient who’d been fighting for his emancipation for years. While I was never arrested walking into institutions abroad, I was escorted off the premises by police within minutes of entering this locked U.S. facility with a chain-link fence around it.

As a result of what’s known as “handicapitalism,” corporate interests often take precedence over the rights of people with disabilities in this country — their right to see whomever they want whenever they want, for instance, and their right to come and go as they please. People with disabilities — intellectual, developmental, and physical — have become big business in the U.S., and corporations are chasing the money. In the wake of deinstitutionalization, we no longer have the vast asylum system we once did. Instead, something more insidious has taken root — for-profit institutions that call themselves neurorehabilitation centers, group homes, and other official-sounding names. This multi-billion-dollar industry shapes how the institutional care system operates, from the type of care patients receive to how much states pay for it.

According to Disability Rights New York, which provides free legal and advocacy services to people with disabilities, about 75 percent of the patients at the Western Massachusetts neurorehabilitation center that I investigated are from New York. Why? According to FOIL requests with the New York Department of Health, the state of New York pays out-of-state facilities like this one up to twice as much as it pays its own in-state facilities to care for high-risk patients. (New York apparently does not have enough beds to house everyone in-state.) With approximately $120 million a year on the line, out-of-state facilities like the one in Western Massachusetts send recruiters to New York hospitals to market to patients and their families desperate for help. EJ Schlup says a recruiter pitched him a Jacuzzi, single-occupancy rooms, a world-class gym, a massage therapist and more while he was recovering from a stroke in New York last year. When he arrived at the neurorehabilitation center, he saw the place for what it actually was — a “prison without bars.”

When Congress passed the Americans with Disabilities Act in 1990, Senator Edward Kennedy called the legislation the “emancipation proclamation” for people with disabilities, and no doubt, people have made progress toward equality in the workplace, schools, and communities since then. However, the most egregious form of discrimination still exists — the involuntary segregation of people in institutions. A person can be sentenced to what essentially amounts to life in a prison simply because of a disability. Would society allow that for any other group of individuals — incarcerating someone because of the color of their skin or their gender identity?

Once inside these facilities, people with disabilities are often stripped of even more rights. Between 2000 and 2016, the Western Massachusetts facility I investigated for my series filed for guardianship on 112 of its patients, according to a case-by-case review of court records. (The facility holds up to 164.) A guardian is someone who makes personal and medical decisions on behalf of a person who has been declared “incapacitated.” Many legal experts describe the guardianship process as a kind of civil death. “The life you live,” one disability rights attorney told me, “is what someone else lets you live. You become an ‘unperson.’” In Massachusetts, a special type of guardian called a Rogers guardian must be appointed to administer medications to these so-called incapacitated persons. At the neurorehabilitation center in Western Massachusetts, over 75 percent of the patients have received antipsychotics — close to four and a half times the national average for care facilities like it. Chemically restrained and stripped of their ability to make even the most basic decisions (like where they want to live), many people with disabilities never get out.

In his opening statement at a congressional hearing on guardianships in 1987, Congressman Claude Pepper called the practice the “most punitive civil penalty that can be levied against an American citizen, with the exception, of course, of the death penalty.” He went on to say that “the typical ward has fewer rights than the typical convicted felon . . . By appointing a guardian, the court entrusts to someone else the power to choose where they will live, what medical treatment they will get and, in rare cases, when they will die.” Thirty years later, the number of guardianship cases in this country has only grown.

“Why do I have rights if I can’t use them?” one former care facility detainee asked me not long ago. Somehow, we have come to think of the incarceration of people with disabilities as normal and even humane. These modern-day institutions might look nicer and have pleasant-sounding names like Vibra and CareOne (versus the Belchertown State School for the Feeble-Minded, for instance), but the thought behind them is the same — people with disabilities need to be “taken care of” in isolation.

While covering the burgeoning civil rights movement in the South, journalist David Halberstam became famous for taking a definitive stand against racism in his writing. During an interview in 1999, the former New York Times reporter (who died in 2007) commented on his coverage from the 1960s. “The editorial bias is not in the reporting, the bias is in the ugliness of the act,” he said. Many journalists experience a point in their career where they witness something so appalling, they begin to realize the “he said/she said” model of journalism just won’t cut it — that something more is needed to capture the abject injustice of a situation. I have pitched the story of people with disabilities being committed to long-term care facilities against their will to numerous media outlets. At times, the response has been almost hostile — a questioning of my motives. Other times, editors have told me they’ve heard the story before. As a result, I decided to invent my own model of advocacy journalism to get this story told, incorporating targeted social media campaigns and short documentaries as a way to call out decision makers and start a grassroots fire for change.

To dedicate myself to this endeavor, I quit my job as a journalism professor in July 2016. My experiences filming people with disabilities compounded by the hateful rhetoric spewing from that summer’s presidential campaign made me realize I had to step out from behind the gates of academia and reclaim my voice. I bought a camera and editing software for my computer and carved out an office for myself in my son’s overcrowded toy room. After releasing my first episode, I heard from people across the country who still had loved ones trapped in institutions: a father who was forced to undergo a psychiatric evaluation and threatened with arrest during his crusade to free his son with Down syndrome; a wife who dedicated her life to advocating for her husband who, since being institutionalized following a traumatic brain injury, had lost all of his bottom teeth and was once sent home with a bedsore that turned out to be MRSA. Sadly, Terry Lawrence died just last month at the age of 57.

There have been other losses and setbacks along the way as well. Adam Graziano, the subject of #LetThemOut’s Episode 1, was liberated from the Western Massachusetts neurorehabilitation center I profiled in my series a few months after the episode’s release. However, as his family continues to struggle to find services for him, Adam’s adjustment to life on the outside has been challenging. At one point, Adam told me, he even called the facility and asked if they would take him back. Some people might see this as proof that Adam should have stayed locked up, but to me, it’s just more evidence of how we continue to fail people with disabilities. Community integration only works with supportive services — and an overall supportive society.

For me, probably the biggest blow has been the wall of indifference I’ve encountered trying to tell these stories — even from supposed advocates like the Disability Law Center of Massachusetts, the federally mandated protection agency for the Bay State. After seeing photos of Adam Graziano’s body pockmarked with bruises from behavior techs’ administering antipsychotics against his will, DLC Senior Attorney Nancy Murphy called Adam’s incarceration a “complicated situation” with “no clear violation of his rights.” As advocates and I continued to press Murphy to take action, her final email to us made it clear who was in control. “Please be reminded that any records release or conversations about Adam should be with the consent of his guardian,” she wrote. To this day, the guardian has not responded to any of my inquiries, and as of my last count, he is one of three attorneys handling more than half the guardianship cases at the facility in Western Massachusetts.

Despite all the challenges, I have more moments now — more experiences contributing to my belief that I can’t stand by as groups of people continue to be isolated and abused to what some advocates consider the point of torture. I know I am one small voice, but my stories are all I have left.

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37 COMMENTS

  1. So many things are wrong with this CareOne facility, I don’t know where to start. I’ve known people who were done in, more or less, by a “lack of competency” ruling. When life gets signed away to a guardian, that can be all she wrote. Then you’ve got these doctors coming up with psych labels just so they can put people in their care on neuroleptic drugs. Next there’s the death rate, a percentage that has to be way too high. It’s good that you are there with the video camera because someone needs to do some real investigating, and if possible, shut these folks down. Unfortunately, these facilities are becoming the norm, and there’s bound to be a time lag before Joe Public wakes up to the extent of the problem, a problem that is certain, barring more investigations, to grow with time. Thanks for letting people know about these neurorehab centers, and I truly hope your work can manage to do some good for some of those people who are trapped in what can seem an abysmal situation.

  2. Every catastrophe causes the GNP to rise. It doesn’t matter if the catastrophe is a mental health diagnosis or the destruction caused by earthquakes, hurricanes or wildfires which destroys thousands of homes. This is because only the money which goes into the affected area (or person is counted) is counted. The destruction to people’s lives and property just isn’t a consideration at all. Why aren’t the less expensive non-drug therapies more widely used? Economics. More money can be made by drugging and locking up people than can be contributed to the economy by helping people get well and lead productive lives which increase harmony in communities. While I realize this sounds odd, please read: Endangered Economies: How the Neglect of Nature Threatens Our Prosperity, by Geoffrey Heal and Buddhist Economics by Clair Brown on how distortions in how we measure such things as GNP and the failure to account for all costs involved in producing (and marketing) a product winds up making our society heavily weighed in favor of large corporations, which is against the principles of capitalism as well as a major reason for the growth in socialism and communism.

  3. I agree with every word. However, there is something you missed or didn’t include here.

    In the area where I reside, the cost is incredible. The average “group home” charges between 300 and 400 dollars a day just for room and board. Add into that waivers for “supportive employment (which are paid by the state), the cost of transportation and oversight of these people (which resembles a work release program) and the costs likely double. “Supportive employment” is yet another way these people are exploited as those they are providing work for are granted a sub minimum wage pay scale. In every single respect, these people are enslaved and no one bats an eye because it has been framed as “treatment” or “therapeutic” and something that will lead to an improved life for the individual. Of course we haven’t included the “social workers” who are always involved and we know they don’t work on the cheap.
    The system is so profoundly disturbed and there is no one to come up along side these folk and lend them a hand up. Economic collapse would have the benefit of ending this abuse. Short of that, however, I don’t see much hope.

  4. Thank you so much, Jody, for helping to shine some light on this abomination.

    I just recently learned about this and the abuse of guardianship to make a profit by institutionalizing older people. I have to say that I am terrified of this. It would be incredibly easy for this to happen to me by someone scouring my medical records and getting a court order to be assigned as my “guardian”. In spite of the fact that I have 2 doctorates, worked productively as a research scientist for 40+ years, and am productively involved in several volunteer positions in my community currently, my medical records show nothing of that or who I am as a human being. My multiple medical diagnoses could easily be twisted to “prove” that I can’t take care of myself.

    I live with my 3 dogs and own my own home. Doesn’t matter. As Jody describes, these guardians steal everything from people who end up incarcerated in institutions and drugged into oblivion. No one, family, friends, doctors, can get you out.

    Homo sapiens is truly the most degenerate species on the planet. Every day I look at the shotgun in my closet and ask myself if I can make it through another day. My dogs are all I live for now.

  5. Sadly Jody I saw a 20 something severely physically disabled man in a wheelchair who had very limited use of his limbs in addition to speech difficulty also confined with the rest of us in the private mental institution , Ridgeway Hospital in Illinois . If me and another inmate didn’t help him bathe and feed him sometimes , the staff would just let him lie or sit in his own waste most times. Some times they spoon fed him other times he would just throw his face into a plate with a hard boiled egg and just eat it shell and all.They did give him “medications”. This was 50 years ago .Your blog is an extension of what’s been going on in a similar way but now with more technology , for who knows how long ?

  6. Thank you for this!!!! FINALLY, some #realnews about the caging of disabled people! Those snake pits aren’t just “prisons without walls”. They’re also prisons without due process! Fuck it, OJ got treated better than that! Way to go, Ms. Santos!

  7. Thank you so much for dedicating your life to revealing one of many horrors that capitalism delivers to Americans. I don’t personally have a loved one or friend who is caught up in this nightmare but my passion is helping to liberate people from chemicals in food/home in the hope of preserving health and in a larger context your revelations are part of that effort 🙂 THANK YOU!

  8. Jody, you and Bob Whitaker have a lot in common. I’m limiting my visits to MIA simply because what I read makes me feel hopeless, angry, and grieved. I’m “in the closet” and worried about my own safety.

    My mom has been talking about putting me in a home. Not all are as nasty as the ones you have shown. But the fact that such dehumanizing places exist at tax payer expense is troubling!

  9. I have been screaming about how nursing homes, schools, and jails all use drugs on people for a couple years now. In fact, I am trying to get Mr. Whitaker to take me seriously and publish an extended study that I wrote, called Death of a Psychiatrist, for a couple years now. The use of the drugs in these places, where people are held against their wills, and where they are subjected to all kinds of physical and mental torture, is unbelievable, and I salute your efforts in trying to address this. We are the very few who realize that schools, nursing homes, jails, and psych hospitals are all using the very same methods to confine and contain people, to drug them and control them, and to profit (both themselves and their subsidiaries, such as drug companies and security companies and the borderline “medical profession” such as nurses and aides), and all while they do it with no regard for the human rights and the dignity of the people who are in that way victimized. Thank you for doing this extremely important work. I have read hundreds, if not thousands, of people who are working on the behalf of the psychologically oppressed. You are the most important of them all, because you are addressing this very real need that is out there that no one else is addressing. I have tried my best, but even I have failed to get people’s attention to this very real situation. Good luck to you.

  10. This is really scary to me as I am am also a parent of an autistic child. I am surprised at the level of indifference you mention in the article, but maybe I shouldn’t be. If we can institutionalize and brutalize persons from any group, why not those labeled with disabilities? Unfortunately, I believe parents are indoctrinated by disability groups to view their children as “defective” and a problem to be solved and cured. These non-profits also sell the public on the idea that autism is a terrible disease in order to raise money to line the pockets of the leadership of these organizations. The money never makes it’s way to actual people. Meanwhile families struggle to provide the opportunities for their children because of lack of finances. Public agencies that are responsible legally to provide services are spending millions on housing – giving money to these greedy institutions instead of investing the money on helping families and the individuals themselves to live independently which I believe would be cheaper in the long run. My family has been turned away from resources by government agencies claiming there is no money in the budget which is a lie. I wish to point out that autism is seen far too often by society as a deficit rather than a positive. We need to detach the word disorder from autism. I wish we could figure out how to make people less indifferent to the suffering of others but I’m afraid that these days society has become numb to it – accepting that this is just the way things are instead of questioning if its right or wrong. As the case with hospitalizations in general, people justify it by saying there is nowhere else to place a person deemed to be a danger to themselves or others. Persons are judged on the basis of any behavior deemed outside what is “normal” by societies standards.

  11. I agree with Eric Coates , Jody Santos is #1 in my book .
    Excerpts I wrote down from some research> ( Dr. Foster Kennedy, Professor of Neurology at Cornell Medical College , published an article in the official journal of The American Psychiatric Association calling for the killing of retarded children age five and older__
    “those hopeless ones who should never have been born__ Nature’s mistakes, see his ” The Problem of Social Control of the Congenitally Defective; Education , Sterilization,Euthanasia, ” American journal of Psychiatry 99(1942):13-16 ; also his “Euthanasia: To be or not to be,” Colliers 103 (May 20 1939 );15.)
    Strange that after 3 hours on the internet I couldn’t find the full texts of “Dr.Kennedy’s” articles anywhere although they were referred to in a number of places . Although there was one place where they offered to let me read it for $35.00 . Anyone out there can afford or has the connects to print out both articles in full here on MIA or knows how to find them for free ?
    This next quote by Chris Hedges who was a journalist reporter fired by the New York Times somehow connects for me . ” We now live in a nation where doctors destroy health , lawyers destroy justice, universities destroy knowledge, governments destroy freedom, the press destroys information, religion destroys morals, and our banks destroy the economy.” I’m sure most of us could easily extend that quote out much farther. Hedges actually taught history to prison inmates in the US using Howard Zinn’s , The People’s History of the United States . He says 2.3 million people are in prison in the USA, 1/4 of which under a “SMI” diagnosis, and are so “Medicated” they sleep 18 hours a day .
    I am still glad to be alive and unmedicated at the age of 71 but I feel the pressure from powerful wealthy ignorant heartless insatiable people near me and from a distance that seem to own control and exploit everything to their own selfish purposes hiring willing “employees” to do their bidding . The idea of revolution comes to mind followed by the idea of hiding . But how and where ?
    Is this where Zorba the Greek just starts dancing ?

    • My university library online access only goes back to the 1980s for that journal, but you should be able to go to your local public library and request a copy through interlibrary loan.
      Do you have the citation for the quote by Chris Hedges? I’d like to read the whole article. He is a prolific writer who speaks the truth! The quote you provided is so on point!