Institutionalization Wasn’t So Long Ago
November 15, 2008 by Kristina Chew, PhD
Filed under Health
The woman I spoke to at the birthday party yesterday told me that her brother had been institutionalized at the Cambridge State Hospital. Originally called the Minnesota Colony for Epilectics, it became a state hospital for the developmentally disabled and for those with “mental deficiencies” in 1949; it reached its peak population of 2008 in the 1960s. In 1972, a class action suit was filed against the state’s six State Hospitals by the parents of some of the residents ” who felt that the conditions, care, treatment and training did not meet constitutional standards” (this photo says why). This started a movement to move individuals with developmental disabilities into community settings such as group homes where they might live as independently as possible, and not be shut away for their whole lives.
Today’s Daily Express tells the story of another forgotten child, Prince John, the sixth and youngest child of Queen Mary and George V. John had epilepsy and a “form of autism”:
He suffered his first epileptic fit when he was four and as these gradually became more frequent, it was decided that Johnnie should be hived off to the Sand ringham estate with his devoted nurse Charlotte “Lalla” Bill. Those were the days when little was known about epilepsy, and when treatments included confinement to hot baths in mustard water.
When he visited his doctor in London, the car’s blinds would be drawn so he would not be seen having a fit in public.
Occasionally he would be spotted at Sandring ham, gazing wistfully from a window or playing at soldiers on a wall, paper crown on his head and a wooden sword in his hand.
One observer described him as “a distant figure, tall, muscular but always remote, who would be glimpsed from afar in the woods escorted by his own retainers”.
He was even barred from the royals’ family portraits and photographs, including his parents’ silver wedding photo in July 1918. But this popular myth of the “monster” boy of Sandringham is being challenged by the people who knew him best.
John died in 1919 at the age of 13.
And hearing about his life and that of the older brother of the woman I met last night, makes me more than grateful every day, that Charlie lives with us, goes everywhere with us, in the community and in the world.
Life Outside
Synopsis and Realplayer audio
November 15,2008.
Soundprint.org
Large (16 or more residents) state DD institution residents 21 years old or younger
1950: 48,354
1965: 91,592
1975: Congress enacted the Education for All Handicapped Children Act (Public Law 94-142)
1977: 54,120
1982: 26,254
1987: 12,026
1989: 9,230
1991: 6,944
1996: 2,916
1997: IDEA amendments of 1997.
1998: 2,471
2000: 2,130
2002: 1,983
2004: 1,771, also IDEA 2004 reauthorization
See
Lakin, C, Blake, E., Prouty, R.W., Managan, T. & Bruininks, R.H. (January 1993). Residential services for persons with developmental disabilities: Status and trends through 1991 (Report #38). Minneapolis: University of Minnesota, Institute on Community Integration.
and,
Children in Institutions for the Developmentally Disabled.
Report for National Disability Rights Network (2006)
Which might have some relevance when people say, “I never saw children with developmental disabilities in my school when I was younger”.
Large (16 or more residents) state DD institutions residents 21 years old or younger
1950: 48,354
1965: 91,592
1975: Congress enacted the Education for All Handicapped Children Act (Public Law 94-142)
1977: 54,120
1982: 26,254
1987: 12,026
1989: 9,230
1991: 6,944
1996: 2,916
1997: IDEA amendments of 1997.
1998: 2,471
2000: 2,130
2002: 1,983
2004: 1,771, also IDEA 2004 reauthorization
See
Lakin, C, Blake, E., Prouty, R.W., Managan, T. & Bruininks, R.H. (January 1993). Residential services for persons with developmental disabilities: Status and trends through 1991 (Report #38). Minneapolis: University of Minnesota, Institute on Community Integration.
and,
Children in Institutions for the Developmentally Disabled.
Report for National Disability Rights Network (2006)
Which might have some relevance when people say, “I never saw children with developmental disabilities in my school when I was younger”.
I had a comment, with citations and somewhat more data, that the spam filter doesn’t like, but the nutshell version is that the number of under 21’s in large DD institutions has changed thusly,
In 1965–91,592. In 2004–1,771.
I wonder how those who were confined to these “cages” were able to adjust… or if they were able… when the homes worked more with the patients leading a more active life.
I hope things like this never happen to my Woodjie or your Charlie. *sniff*
Have you written about the Geraldo show that will take place on Jan 9th the anniversary of his willowbrook show. It is one hr and ARC is working on getting stories and videos:
http://www.arc-nebraska.org/Geraldo%20Rivera%20Takes%20on%20the%20Waiting%20List%20Crisis!.htm
Regan: excellent point.
One part of the “hidden horde” languished and died nameless at institutions like these.
thanks, Bonnie, I haven’t written about Willowbrook yet, need to—-and think we need to remember about these places so the likes of them are not considered “options.”
I was a highschool freshman when the Willowbrook story broke and it made me disturbed and sick to read about the conditions that children and those with disabilities would be made to live in, with the sick irony of the lovely name of the “state school”.
Look up “Willowbrook State School” on Wikipedia for the rather sordid history of this facility, including using the residents as human guinea pigs to test treatments for hepatitis in the 1960’s.
“…Many of the patients [at Willowbrook] have diseases and defects that will ultimately kill them. Some die of other causes: ten years ago, a measles epidemic swept through the institution and killed 250. Of the 125 patients who died of various causes during 1970, nine choked on their own vomit before attendants could reach them.
Conditions at Willowbrook were not always like this; seven years ago they were even worse…”
Human Warehouse
Time Magazine
Feb. 14, 1972
Phil Schwarz,
Thank you.
Tabulating the numbers was quite eye opening.
And as for “not so long ago” — try last week:
From: Polyxane Cobb
Sent: Thu, 13 Nov 2008 7:24 am
Subject: JRC [Judge Rotenberg Center] advertising on classical radio station!
Dear Friends,
My son, Ethan, a classical music fan, listens to WCRB-FM every morning. They are the only commercial classical music station in the
greater Boston area. This morning, to my complete horror, they ran an ad from JRC, advertising to parents of young people who are autistic, mentally challenged, refusing to go the school, difficult to handle, etc… that they can provide and loving and safe learning environment
without the use of psychiatric drugs. My screams of dismay blocked out the rest.
I am emailing this to a select group of folks,/ You all have email lists of other advocates and champions, student groups, and legal advocates. I urge you to contact your members and urge them to flood the station with complaints. This is their online CONTACTS page link:
http://www.wcrb.com/page.php?page_id=7288
JRC is not yet listed on their SPONSORS page, but other local companies are — companies with which your members might be doing business. Perhaps they are unaware that they are sharing advertising space with JRC. Perhaps they should also know. This is their SPONSORS page:
http://www.wcrb.com/page.php?page_id=8556
Poly Cobb
Placement is a set of services, not a “place”. If only it was as straightforward as “small setting better than large facility”.
Death of Developmentally Disabled Man Exemplifies Need for Proper Care Whether in Institutions or Community Based Settings in California
Jan 2007
“The Sacramento Bee reported in a front page story on the controversies raised by the death of Donald Santiago, a person with developmental disabilities who for over 40 years lived in a state owned and operated institution (Agnews Developmental Center in San Jose), now slated for closure in mid 2008. Santiago was placed in a community-based state licensed facility [Justin's Home, Union City] in 2005, and passed away December 11, 2006 [of untreated pneumonia]. The article, by Sacramento Bee reporter Clea Benson, reports the conflicts raised by different advocates on how Santiago was placed, and appropriate level of his care – and the appropriate response (or lack of response) to his illness…”