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Content Warning: Use of the r word and outdated language, such as “handicapped”
People with disabilities are often considered sick. I know this to be true, because I often get treated by unassuming people that my mental illness will be cured, that it will “go away”, that I will no longer suffer, it goes on and on. What I believe to still be present in our modern society today is the medical model - that people with disabilities are sick and need to be cured. Understanding this perspective can help you understand how institutions came to be. Superintendents were often physicians, and institutions were built to resemble hospitals, and were even called “state hospitals” (particularly for people with psychiatric disabilities), where living quarters were called “wards” and “nursing units” and treatments were called “therapy” and “programs”.
During the 50s, 60s, and 70s, money was spent to build newer, larger state institutions for people with psychiatric disabilities and “mental retardation” (Note: the r word is a terrible word and I do not condone it, but for the sake of this post I will put it in quotes to denote that this was the common language for the time.). Children with “mental retardation” were no longer viewed as evil and a menace, but were now rather regarded as someone who needed medical treatment. The then President of the American Association on Mental Deficiency (AAMD), Arthur Hopwood. Insisting that people and children with disabilities needed to be cured, Hopwood advised that money should go to research rather than to services, and that “medicine, not education, will find the answers.”
However, these new institutions were rife with abuse and neglect, and many died. I had recently read a book of essays and journals, filled with outdated language, with one journal about mental institutions. This journal mentioned that people with mental illnesses were often bored and felt a great sense of betrayal from families, and that those institutionalized had little liberties or rights, oftentimes bartering with superintendents for basic items, such as offering to mop for a cigarette or cup of coffee. I even noted that today’s psych wards are very similar to the ones back in the 70s (when this journal was published) - a sense of boredom and betrayal still rings true, and autonomy is often taken away. Okay so back to my main point, before I begin to ramble here.
In fact, in Minnesota, from the 1800s to the late 1900s, 13,000 people with psychiatric and intellectual/neurodevelopmental disabilities died while institutionalized. And it may seem shocking, but parents and doctors, too, oftentimes were aware of the abuse! This was because many held the view that institutions were appropriate if the system could be reformed, and the institutions themselves were properly staffed and updated.
By 1967, the number of individuals with disabilities institutionalized were a hefty 193,188. Unfortunately, and what I find even more sickening, is that institutions egan admitting younger children with more severe disabilities, even if the parents didn’t want them removed. My great grand uncle, Arthur Miller, who had been having epileptic seizures at school, was taken away from the home by the government despite his parents’ objection. He later died in an institution at 18 in 1932.
Having a “handicapped” child during the post-war boom in America was seen as a burden to the parents, and children were continually institutionalized, including from middle and upper class families. Segregation, a them vs us, became more defined. In the 60s, institutions segregated; superintendents and staff were given separate showers, toilets, and even lounges than those institutionalized, while residents were largely grouped into sterile, tiled rooms. Bathrooms were even removed of stall doors so residents could be more closely watched! Another thing I still notice that was common in the 1960s institutions was that doctors wore white coats to denote themselves from the patients - this is still a common thing in today’s psych wards.
So now that my little history lecture is over, I wanted to really discuss Remembering with Dignity and it’s huge role. To reiterate, 13,000 institutionalized Minnesotans died between 1866 and 1997. The worst part? They were buried in unmarked graves, usually with a grave marker without a name or dates, usually just the person’s case number. During the 90s, a group of self advocates including people who had been institutionalized, worked together to collect historical records of those deceased and replace the grave markers with real gravestones. Since 1994, Remembering with Dignity has placed over 8,000 grave stones on unmarked graves, and brought attention to the abuse and neglect that went on in institutions. The Star Tribune, MinnPost, PBS, and the Pioneer Press even brought publicity to the cause, and in 2010, the Minnesota government issued an official apology (although the call for an official apology was turned down the first time).
Self advocates also honor people’s memories through art – Story Wall of Pictures, a sculpture capturing the spirit of disability pride and power, Music for Social Change – and hold annual celebrations of life. These ceremonies are held at the St. Peter, Fergus Falls, Rochester, Willmar, Hastings, Moose Lake and Anoka, and Cambridge State Hospital, where my relative died. I never knew him, but the pain is generational – my grandmother and mom both cry, and I admit, the pain is all too real for me too.
Recently I’ve found my second passion - social work, specifically social work around disability. I had secured a job at the University of Minnesota assisting a research specialist, and heard about the MNLEND Fellowship in a self-advocates committee meeting at work. Right off the bat, I was interested - my great grand uncle had died in the Cambridge State Hospital in 1932 at the age of 18. He had been taken from his home by the Minnesota government; he was institutionalized because he had been having epileptic seizures at school. My grandmother tells me that one summer day, one of my great grand uncle’s siblings, at age 12 or 14 (I can’t remember the exact age), came to visit him at the hospital. The family was too poor to all come and did not have a car, so the brother had to take the bus a few hours away from home. When the brother arrived at the state hospital, my institutionalized great grand uncle cried, begging to go home. He likely died from the abuse that many patients received at state institutions.
So back to the fellowship - What is MNLEND? It stands for the Minnesota Leadership Education in Neurodevelopmental and related Disabilities. So your next question is probably, What is a neurodevelopmental disability? Neurodevelopmental disabilities happen at birth or shortly after birth, and include autism spectrum disorder, fetal alcohol spectrum disorder, cerebral palsy, epilepsy, learning disabilities such as ADHD, and intellectual disabilities. The program works to develop leaders in the NDD field. Fellows are trained, one day a week for four hours, to best support youth with NDD and their families. Fellows are also given training and opportunities to support systems, such as the medical field, and policy change.
Since 2009, MNLEND has fostered a partnership between the University of Minnesota’s College of Education + Human Development, Department of Educational Psychology, Institute on Community Integration, University Center for Excellence in Developmental Disabilities, School of Medicine, Department of Pediatrics, and the College of Liberal Arts, Department of Speech Language and Hearing Sciences. Fellows collaborate with each other and departments across fields such as Neurobehavioral development, Child Welfare, genetic counseling, nutrition, social work, and occupational therapy (not to name so many more!).
Before the Fellowship begins, each Fellow participates in a late-August interactive two-day in-person training around person- and family-centered practices (I bet you’re wondering what is person-centered? Person-centered means that a person is treated as a person first, and the disorder they are being treated for comes second and is treated specific to the person. Most doctors are still illness-centered). Sessions happen once a week, on Thursdays from 8am-12pm, for 10 months. Each session features core faculty, guest speakers, and community members, with a range of perspectives. Discussions and activities are part of the fun! There are required weekly pre-session materials to complete beforehand. These pre-materials are assigned as self-paced learning requirements to be completed around Fellows’ schedules. It’s definitely a lot of work, but being able to help other people, specifically those with disabilities, sounds really rewarding!
To apply, I’ve been slowly writing a four-page letter of interest, double spaced in 11-size Times New Roman. I’ve had plenty of time to apply, but tend to procrastinate! The letter of interest includes a one-page project proposal. I’ve come up with quite a detailed project, that comes in three phases:
If you’re interested in the history of the Cambridge State Hospital:
If you’re interested in reading more info about the Fellowship you can go to this link.