Developmental and Mental Health. Last Bastions of Acceptable Discrimination? Guest blog author: Christopher Scott Medeiros

Today I turn my blog over to a very special guest writer. This is a subject near and dear to my heart, as is the author. 

Developmental and mental health disorders (DMH) are the last bastion of acceptable discrimination in modern society. Discrimination based on sexual orientation, religion, creed, colour and socio-economic status still exist, but are frowned upon.

However it is quite acceptable to make “retard” jokes.

People use the word retarded (and its variations) in common lexicon without any thought to the pain that it may cause to the person beside them. The general population does not see how using a slur like the r-word can be harmful. End The R- Word is a movement organized to bring awareness to this discriminatory practice, but it is having trouble getting support outside the DMH community.

People who disclose their mental or developmental health issues are also routinely denied paying jobs. If that happened to any other segment of society there would be outrage and charges laid *

Is this discriminatory tide turning?

numbered, not named, grave marker at Huronia

The care and treatment of people with disabilities in Ontario has had a dark and dirty past. Recent lawsuits, including the Huronia Regional Centre class action highlight this fact. The facility was notorious for the inhumane treatment of its residents. The facility opened in 1876 far from main cities and towns, and was shut down on March 31, 2009. Parents were often forced into placing their children in institutions such as Huronia, because society did not accept, nor want, such people in their midst.

At the time of its opening, Huronia was the first facility of its type to be located in Ontario *. Huronia Regional Centre was built and opened at a time when not much was known about mental and developmental health or how to care for individuals with DMH. The main result of that ignorance is that community services or supports for individuals and their families have historically received poor support. With no supports in the community and with societal opinion making it extremely challenging to keep their children at home, institutions like Huronia bulged at the seams. The province operated 16 additional facilities by the 1970’s and at its peak Huronia itself exceeded 2500 people.

The buildings at Huronia Regional Centre were over-crowded and in terrible disrepair. Holes in the floors and walls were left unpatched and un-fixed creating a serious danger to the residents (Simmons, 1982). Rooms were locked as if the residents (never referred to as people, always referred to as residents or 'clients', as if they chose this life) were criminals in prison (Institutionalsurvivors.com, 2014). Punishments were cruel and horrific. Facility staff often forced residents to enact the punishments on each other. (Ra.ocls.ca, 2014). Residents were insulted regularly by staff. They were told that their lives were useless, that they would just be a burden on society.(Ra.ocls.ca, 2014).  Residents were heavily medicated in order to control and subdue them. Rather than providing programs to educate and help residents, staff found it easier to keep them drugged up, virtually comatose. (Ra.ocls.ca, 2014). There have been many reports of sexual abuse inflicted upon residents at the hands of the facility's staff and even residents being forced to sexually assault each other for the entertainment of staff (Ra.ocls.ca, 2014) Basic health and hygiene were neglected. Residents would often go un-bathed for extended periods of time leading to infections and other medical conditions and illnesses, as well as feelings of depression and self-loathing. When a resident died at the facility they were simply buried unceremoniously behind the barn. There were no funerals. The cemetery is difficult to find, hidden. There are no grave stones or markers of any kind to honour the person laid to rest. There are simply tiny slabs of stone with numbers etched in stating the order in which the residents died. Numbers instead of names marked their last resting places. That was how they were seen, a number, not a person.

Take a look at that photo above now, knowingly.

Some former residents have decided to open up and publicly share their stories of their time at Huronia Regional Centre. Marie Slark was admitted as a seven year old in 1961. She recalls having her pants pulled down and made to walk around the facilities play room in front of all staff and residents for the simple infraction of speaking. (Ra.ocls.ca, 2014). One of the punishments referred to again and again by former residents is “dig for worms”. Residents, children and adults, some with the developmental age level of just a toddler, were made to lie face-down in the dirt with their hands behind their backs for up to 30 minutes for ‘infractions’ like wetting themselves while under sedation, or vomiting when sick. (Ra.ocls.ca, 2014) Gary Keefe recalls how staff often encouraged and rewarded violence from residents inflicted upon each other. (Ra.ocls.ca, 2014). They would send a resident down a human tunnel of other residents, who were encouraged, or forced, to punch, kick and spit on the person all the way through.” (Ra.ocls.ca, 2014). Barry Smith lived in Huronia from the age of twelve to the age of eighteen. He remembers being made to lay face down into a plate of food if they refused to eat. (Ra.ocls.ca, 2014). Then there is the story of my late uncle. “Phillip John Scott Pollard was born November 29th, 1952 and was admitted into Huronia in (1959) at the age of 7. Phillip had severe autism and was non-verbal. Phillip lived at Huronia for 42 years. While living there he was subjected to both physical and sexual abuse. He would often be confined or restrained so that he would be more “easily” cared for. Phillip was one of the first people removed from Huronia when it was starting the first stage of closing down. He was moved into a group home and within a year he caught the flu which took him from this world in a matter of days. Because he did not die nor lived at Huronia at the time of its closing, he and his family are not eligible to be a part of the class-action lawsuit being brought upon the Canadian government for its lack of protection to former residents of Huronia as well as 2 other facilities.” (Pollard, 2014).

Survivors of Huronia Regional Centre along with former residents of Rideau and Southwestern Regional Centres and their families launched a class action law suit against the Canadian government. (Ra.ocls.ca, 2014) More than 65,000 documents related to the facilities and former residents are being made publicly available, with agencies like Community Living Toronto assisting with the distribution of the files. (Ra.ocls.ca, 2014) . Ontario Premier Kathleen Wynne delivered a woefully inadequate official apology in the provincial legislature that highlights once again that the rights of people with developmental and mental health disorders are not on an equal plane with the rest of society. (Ra.ocls.ca, 2014). In reference to Premier Wynne’s passing the blame for the inadequate apology onto the courts, Kirk Baert, lead counsel in the class action, said "The Premier got it wrong. She said the courts are still considering the terms of the apology. In fact, the courts have absolutely nothing to do with the apology." Further, "The Attorney General also got it wrong. I was stunned when Minister Gerretsen stood up in the Legislature and said the case had been settled quickly. I can tell you that the case took half a decade, and relates to wrongdoing going back to 1945. By any standard that is hardly 'fast'." (Ra.ocls.ca, 2014). Many people who suffered abuse at Huronia have been denied the right to participate in the class action suit for arbitrary reasons. (Koskie Minsky, LLP). One resident’s family, who fought to have their relative among the first to be re-housed when Huronia was slated to be closed, have been denied the right to sue because he is not currently living, was not living in Huronia the day it closed, and did not die in Huronia. He spent 42 years being physically and sexually abused, but his suffering is not allowed to be brought to light. Former residents and their surviving family members are also discovering that files have mysteriously disappeared from the documents that were made available (Ra.ocls.ca, 2014)

People with developmental and mental health disorders have always been on the bottom of the list in terms of the way they are cared for, housed, and viewed by society. They have the same rights as any neurotypical person but their rights are rarely enforced. People with DMH are viewed by society as not human. Instead they are viewed, and treated, as unwanted animals, burdens. Society in general assumes that because someone has a DMH they have no value and that they do not feel emotional or physical pain. Some of the greatest minds and figures in history have been proven to have had DMH. “Isaac Newton who has been labelled with having bipolar disorder, even Abraham Lincoln who was the 16th president of the United States suffered from severe and debilitating depressions that sometimes led to suicidal thoughts.” (Gsappweb.rutgers.edu, 2014). There is conjecture that Benjamin Franklin, Glenn Gould, Albert Einstein, Bill Gates and Mike Lazaridis are all on the autistic spectrum. These brilliant figures have contributed greatly to society despite DMH. Some would argue their brilliance was actually a direct result of their individual diagnoses.

It is sickening to think that even though such brilliant figures had developmental or mental health disorders that people with DMH today are still treated as lower class citizens. There is a drastic need for change and reform in the way they are housed, cared for and viewed by society. People like Marie Slark, Gary Keefe, Barry Smith and Phillip John Scott Pollard should not have to suffer the indignities and tribulations that they have been through. They should not be hidden away from society just to make life more comfortable for the rest of society. They should be given the same opportunities and should have access to the same health care, rights and services as a neurotypical person, not less. They should be allowed to embrace and enjoy life and experience everything it has to offer. There have been some great strides in the way people with DMH are housed, cared for and viewed by society but there is still a long way to go. They are people with so much to offer, as long as general society allows them to participate.  Autistic people such as I are now standing up and insisting that we be a part of the organizations that purport to serve and assist us. Large, well known organizations that are supposedly set up to provide support and awareness, such as Autism Speaks, actually have, within their mandate, the elimination of autism, and refuse to allow people with ASD (autistic spectrum disorder) to participate on their board. This very mandate perpetuates discrimination of people with various forms of DMH and supports the eradication of a particular segment of society. Now that we are gaining the opportunity more and more to express our cares, desires and worth, society will no longer think it is acceptable to discriminate against us.

One day, hopefully soon, people with developmental and mental health disorders will be seen simply as people.

Days of Whine and Rosè Post Script:

My brother spent 42 years of his life in Huronia. I have many many fond memories of that awful place. Why? Because they would not allow us to visit unannounced, instead we were allowed to come up for 'meetings' (my brother's room was spotless, he was clean and well dressed at these times) and for the annual picnics, which were frankly, a lot of fun! Live bands, corn roasts, games, prizes, rides, anything you could want from a 'fair'. It was a deception. A re-direction which we questioned, but for which we were always re-buffed. As a child I looked forward to out visits to Orillia. But even then, I knew something was not right. My children, my nieces and nephews all have similar memories. It was the deception. Even as small children we knew we were being 'duped'. My brother was one of the lucky ones. Our advocating as a family allowed him to be one of the first re-located to a community respite home, right here in Toronto, as Huronia was closing. 

We got him out! 

Unfortunately, while in the group home, he contracted the FLU, the same strain that killed Jim Henson killed my brother. In 5 days.  

My brother suffered sexual and physical abuse at Huronia for 42 years. But because he was not IN Huronia when it closed, is not living now, and did not die IN Huronia, his story cannot be told. Cannot be part of the class action. To the government, he did not exist. His suffering never occurred.

But Phil has had his story told, his suffering acknowledged, in part, in this guest blog.

The picture at the beginning of the post is of Phil and I, many many years ago,

Who wrote this guest blog?

MY SON

Who himself has a diagnosis of Asperger's. 

My only child who actually remembers his Uncle Phil.

I am so proud to have a son who not only wishes to honour his uncle. not only wants to ensure no one discriminates against himself or his brother, but is PROUD of who he is, and whom he is becoming. 

Christopher Medeiros, author of this piece, you are an inspiration to me, and an honour your entire family. 

I am SO PROUD to be your Mom!

XOXOXOXOXOXOXOXOXOXOXOXOXOXOXOXOXOXOX