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Independent Living News & Policy from the National Council on Independent Living

Op-Ed: A Unified Cross-Disability Movement Fuels Needed Change

By Ronald Bassman PhD, NCIL Mental Health Subcommittee and Mindfreedom International

By way of introduction, I am a person who spent his 23rd birthday locked in a seclusion room of a mental hospital diagnosed with paranoid schizophrenia. Not responding to massive doses of Thorazine and Stelazine and considered hopeless, I became one of the last of the patients (prior to its being banned) to be subjected to insulin coma therapy along with electroshock. Five times a week for 8 weeks, I was strapped down and injected with enough insulin to put me into 40 comas. The “treatments” resulted in memory loss, blunted emotions, and an inability to concentrate enough to read. I was discharged and advised that I would have to take psychiatric drugs for the rest of my life and to abandon any hope of using my Master’s degree in psychology.

My story is long with twists and turns, so I will simply mention a few highlights. Despite all the dire predictions and the assault on my body and spirit, I did recover, return to university and became a licensed doctoral level psychologist. I have had no therapy nor taken any psychiatric drugs for more than 40 years. The more complete story can be found in the book I wrote, A Fight to Be: A Psychologist’s Experience from Both Sides of the Locked Door. Since my healing/transformation, I have devoted my life and work to changing a health care system that crushes the spirit and too easily and too often randomly violates the rights of those who are labelled “others.”

I write this article as a member of the NCIL Mental Health Subcommittee in conjunction with my work as Executive Director of MindFreedom International. I have a vision of working with Centers  for Independent Living and disability justice organizations to support the right of people to live in the least restrictive settings as the Supreme Court ruled in the Olmstead Decision. It is abundantly clear that one’s quality of life substantially improves with Home and Community Based Services (HCBS). A favorite quote of mine from anthropologist Edward Hall states: “Failure to fulfill one’s potential can be one of the most devastating and damaging things to occur to a person.”

Currently, the practices of Guardians have come under scrutiny from an increasing number of sources. It is a complicated issue that has long needed to be spotlighted, humanized, and reformed. The attention that is being given to Supported Decision Making (SDM) may be our best way to get through a maze of different regulations and practices among the states. I do believe that protections have been legislated, but sufficient monitoring and enforcement are severely lacking.

There are now only 14 states that have adopted SDM. I believe that we can do much more with all disabilities by working on causes that we have in common. I remember Justin Dart stressing the importance of including the largest disability group – psychosocial disabilities – in joint advocacy efforts. Psychiatry’s over-reliance on a guiding principle of ableism and mental competency, with its too cavalier assessments and treatments, have much too often resulted in tragic consequences – the loss of personal agency. Those with physical disabilities along with those with non-visible disabilities are too often misunderstood and recklessly dismissed by doctors and judges who do not listen with enough interest to get to know us before deciding to which garbage they can consign us.

Recently an activist colleague and friend, Susan Fitzmaurice told me about her recent harrowing encounter with the potential perils of a psychiatric intervention. She and I had co-founded Judi’s Room, which conducts monthly public education meetings to explore and expand cross-disability understanding and advocacy.

Susan was experiencing post-surgical complications that were causing progressive lightheadedness, and dizziness resulting in cognitive confusion. Her ordeal began when she sought a consultation at the hospital from an ENT (Ear Nose Throat) doctor for vestibular complications from cervical fusion surgery. Susan explained that at the meeting she was initially OK, able to sit upright answer questions and keep good eye contact. Susan describes the following progression of events:

“Cognitive confusion set-in and I could barely hold my body upright. I was finding it increasingly difficult to participate in the conversation. Their concern was evident, and they made a phone call to begin discussing a psychiatric intervention. Fortunately, I was not alone, and we realized that we had to get out of there immediately. I was terrified. I sped down the hallway in my wheelchair to the elevator. Luckily when we got downstairs a shuttle was waiting to take me home. Now I’m afraid to go to the doctor, and I definitely will not go alone.”

COVID has demonstrated the deadly breeding ground of congregate living spaces. The battle to support HCBS and diminish the use of nursing homes would fit well with a more compassionate, supportive system of care. It is abundantly clear that most people would prefer to live at home in the community, and many can, if they receive the needed supports. As agents of change, we must bring awareness to a neglected truth, that regardless of disability we have a legitimate degree of decision-making capacity. It is way past the time for decisions to be made and justified by an entirely “For your own good model.”

For those who wish to make an impact I encourage you to join MindFreedom International to attend Judi’s Room, participate in our collaborative Shield/CIL project and gather our diverse

forces to achieve the influence to meaningfully speak our truth to power.

Comments

  1. Thank you Ron Bassman for speaking up for human rights of people with lived experience of the mental health system. I remember reading your book, and marveling about how you analyzed the experience of torture you received through involuntary shock. Given the way many in our society are now trying to scapegoat us psychiatric survivors, your wisdom is especially appreciated during these troubling times. I recommend all of us NCIL members also join MindFreedom International, search for it on the web. Someone you care about may need the Shield!

  2. Raphael Parker says

    I’ve been diagnosed with ADHD and bipolar and have struggled most of my life but I have a 4.0 I see to you and I’m trying to get on my feet for me and my son. It’s been very difficult to try to find somebody or an organization that would help us. I literally dedicate all my time to school learning and learning and raising my son. My biggest priority in life is to be a good father And being able to support him. I spent a brief time in the military and I fell into selling narcotics at a young age. It produced good money but it left me with a horrible record bubble record and I’m trying to do something better with my life. If there’s anybody that would be willing to help I would greatly appreciate it. My school intuition is covered but we’re in need of housing that is adequate and I’m looking for a job with non profit to be able to help other people. Something that would help me on my educational journey in computer science. Thank you for your time God-bless.