theebrandenburgs blogspear

This page is designed to share information about our struggle to gain equity for our unique children and their learning styles in a public education system that is designed primarily to teach a single type of learner, and which is increasingly sidelined by fiscal and philosophical issues that challenge the core of its collective existence. We are especially interested in unique learners, and the talented people who teach them, their families, and our shared value as human beings. We seek the end of discrimination, the end of seclusion, separation, and isolation, as well as an end to chemical and physical restraints that are commonly used to assault our children and our unique interpretations of the world.

Thursday, December 29, 2011

Institutionalization and Segregation: We Must Not Forget the Past

Institutionalization and Segregation: We Must Not Forget the Past

By Mary Brandenburg

in the Sierra Madre Patch

In these enlightened times, it may be hard to believe that people with disabilities up to the 1960‘s and 1970‘s, were warehoused in institutions, subjected to horrific conditions, severely neglected, mistreated, caged as animals, and sexually abused by staff... because at the time, the rationale to institutionalize made sense. 
People with disabilities were often considered as uneducable, and often, based on the recommendation by doctors, clergy, and sometimes by family members, that they would be better off in an institution. There was a lack of supports to parents to provide care, and also lack of access and rights, to a public education. 
Willowbrook State School is a prime example of why the movement to deinstitutionalize came about. In a February 1972 article, Time reported that Willowbrook “.... resembles Sartre’s vision of Hell. Bare and high-ceilinged, its walls covered with flaking green paint, the room is redolent of sweat, urine, excrement and despair.” 
Institutions, were places to put people who were “imperfect”- out of the house, out of the community... out of sight, and out of mind. Custodial care was seen to protect those with disabilities from society, and to protect society from them.
Hiding away these children from mainstream society, from their homes, their communities, allowed inhumane treatments to develop and perpetuate. During the 1960’s, the children with disabilities at Willowbrook school were intentionally given hepatitis as part of medical experiments.
In 1972, Geraldo Rivera, in conjunction with a doctor and social worker from the institution, exposed the deplorable, overcrowded, abusive conditions the residents were forced to endure. Geraldo showed how some of the residents, placed there as babies by parents who were either scared, coerced, or uninformed, had absolutely no reason to be there. There were children there with disabilities, such as cerebral palsy, that didn’t effect their cognitive skills in any way. Many were fully aware of the horrors, but didn't have the means to express their knowledge to anyone that could help them.
Bernard Carabello was one of the Willowbrook residents Geraldo interviewed. He is considered by many to be the father of the self-advocacy movement, and pioneered the deinstitutionalization movement in the 1970’s. Bernard spent 20 years at Willowbrook State School, treated as if he couldn’t understand life, love, and human affection. He suffered abuse and punishment, but never gave up hope that things would change. He has said he will not rest while there are still people with disabilities left suffering in institutions. 
The exposure of the conditions at Willowbrook, and the resulting judgement and entitlements, served to end the torture and dehumanization of people with disabilities going to school not only in New York, but set the standard throughout the United States. Willowbrook was one of the major catalysts that led to the transitioning of people with disabilities out of institutions and into small community settings in the 1970’s and 80’s as a means to advance social justice.
The doors of Willowbrook, closed in 1987, but the practices of exclusion,  segregation, and removal continue for many people with disabilities to this day. 
Equal access, protection, opportunities, educational equity, and basic human rights are still issues that have not been resolved for people with disabilities. By removing individuals from the mainstream of society, and turning our back on them, allows opportunities for the injustices of the past to resurface to the present.
For example, just a couple weeks ago in Texas, children with autism in special classes located at a public school, were subjected to aversive interventions to “control behavior”. These “procedures” to improve behavior were putting vinegar soaked cotton balls in mouths and forced running on treadmills. 

Throughout the country, there are “treatments” to control behaviors such as lemon juice to the eyes, with holding of food/water, peppers/shaving cream to the mouth, force feeding, and sensory exploitation such as inhalation of ammonia or icing the skin. 
At the Judge Rotenburg Center, a special school in Massachusetts electric shock aversive “treatments” were used on children with autism, mental retardation and emotional disabilities until just recently.

Imagine someone squirting water in the face, or using an electronic cattle prod to encourage a child to “behave”... would it be alright, if it was explained, “Oh, but the child has autism and can’t be controlled”? If these inhumane and abusive treatments were to have occurred to a non-disabled child in the general education classroom, or playground, how quickly public outrage would have brought an end to such treatment?
That these types of “treatments” can be justified as “emergency measures”, and continue to exist for people with disabilities, is wrong, dehumanizing, and demeaning. If these procedures are used in segregated settings, out of the community’s sight, do they become less offensive? Or is it just easier to ignore?
In this enlightened age, we, as parents of a child with a disability have heard unbelievable expressions of misinformation, stereotypes, hatred, and beliefs about “rights” and access to a public education.
There is a belief among some within the community of Sierra Madre that removal, exclusion, and group shunning of children who behave, or learn differently,  should lead to exclusion from their learning community. For some, turning their backs on a child in crisis seems to be a reasonable expectation, rather than gathering supports, pulling together, and standing with the child and family in crisis, as accepted, valued, respected, and welcomed members of the community.  
We should never forget past injustices such as the horrors at Willowbrook. We must keep in mind that the road backwards starts with stereotypes, generalizing, stigmatizing, and denial of equal access and protections for all. Here are comments made by some community members, and which highlight what children with “invisible” disabilities, and their families are up against to simply gain access to a free, and appropriate public education in the least restrictive environment of their home school, and community. Read, and weep... or read and learn... it is a choice.

Comment Roundup:

Here are a few select comments from an article that appeared on Patch last month titled "Autistic Student Makes Bittersweet Return to Sierra Madre Elementary"
"His parents are in la la land if they think treating him as a normal child will make him so. Unfortunately, that is not the case. Yes, this boys deserves treatment, help, and an education. But, this cannot be at the expense of the rest of the children." - Concerned Parent 
"The other parents were not informed of the Brandenburg child's condition before he was unleashedupon their children." - pusddad
"Would you put your own child in a classroom with this threat? Four handlers couldn’t, or wouldn’t stop the threat." - Sierra Madre Elementary parent letter 
"A more restrictive placement is a right. Does that bother you?"  - Joanne
"So now the Brandenburgs feel that they have been victimized . The victims in this were the children who had to endure this child for such a long time before their parents were finally listened to and the school removed this special needs child." - socal 
"It is so unfortunate that SOME parents of children with special needs will insist that they be "mainstreamed" or "included" even when that means the child is helicoptered by a 1:1 aide or develops a stigma because of an inability to observe behavioral norms." - Joanne
"I think if you take a step back you will see that there are classrooms designed for typically-developing kids, and others designed for children who need intensive intervention. Why not place each child in the setting that works best for him or her? Why insist on a "civil right..." - Joanne
"The student in question had first 1 then 2 aides who had to pull him out of the classroom by his hands and feet during a fit, while they were told to get under or behind their desks." - Edugreat
"I don’t care about your transition meetings or calls for diversity building." - Mitch
"Why are they the only ones allowed to stand up for their child's rights?" - Edugreat
"If any of the "normal" kids behaved the way he did, there would be huge consequences. This child was given the opportunity to be part of a "mainstream" classroom. It didn't work out." - Pauline
"The inclusion model works for almost all the special needs kids." pusddad
"The bottom line, however, is that at some point the collective rights of the other kids outweigh his rights. It looks like this boy failed his three year try out to be educated with the other kids. Maybe after some time, he'll be allowed to reintegrate." - pusddad
"Common curteously at a minimum would dictate that his parents would do so. There is a difference between a high functioning autistic child and one who simply is not suitable for a regular classroom setting." - pusddad
"The autistic child in my child's class does not disrupt the other children during class and does not engage in violence inside or outside of it. That is why there is no need or drive to separate him." -pusddad
"If you don't like Sierra Madre and smes because it has too many white folks, move somewhere else. Don't lash out at the rest of the world because your children have social disorders." - pusddad
"I don't agree w/mainstreaming 100%,who want to deal w/fighting a child this is not a teacher job plus some parents want all the rights but don't won't to follow the same rules as gen ed students,I don't feel a child in a diaper should be in a gen.ed building no one enjoy dealing with the body waste of your child these children need to be in a life skill program w/parents to learn how to guide their child in life an stop pushing them off on others,blaming other I often wonder why is the public schools district's the only ones you can bully an you can bully every day @ the end of the day this is still your problem an issuse for the rest of your life not the school's." - OMG
"My husband an I went out to dinner while having dinner a child came up to the table grab food out of my plate I was shock all the mother could say was I'm sorry he have ASD and have a hard time waiting I didn't care abt the ASD the fact is she used it, I call the manger an told him to give her my bill, if that make me ignortant oh well." - OMG

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