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Wednesday, August 01, 2007

Institutionalizing people with disabilities

Guest blogger Kay Olson, a self-described thirtysomething disabled feminist who blogs at http://thegimpparade.blogspot.com/, offers her thoughts on the institutionalizing of people with disabilities, such as explored in this story on CNN.com.

Guest blogger Kay Olson

by Kay Olson

My personal thought on what happened 40+ years ago is that it was a tragedy for whole families and has undoubtedly had a lasting impact on how we view developmentally disabled people today. That is, we're still living with the legacy of those folks being segregated, made invisible, and devalued. It has impacted how we view developmental disability and the way we think of difference - we have all been taught implicitly by this history that people who are intellectually or developmentally different do not belong among us because they're dangerous, completely incompetent and lack any ability to contribute to society. And those beliefs are not true.

One example of the historical legacy: The institutionalization of developmentally disabled people in the 1950s and '60s happened before Roe v. Wade and the legalization of abortion, and while I absolutely support full choice in reproductive issues for women, I do believe that the very high rates of abortion of fetuses with known developmental disabilities has some connection to our social history of what has been considered the potential and worth of certain people. Instead of doctors of decades ago telling families who have just had a baby with a disability that they should institutionalize the child, some doctors now are providing the option of never having that child at all. And we don't have much of a modern legacy of integration of developmentally disabled people into our culture to balance those messages with, to make the choices a woman and her family make about these pregnancies complete choices about potential. Because of this history of institutionalization, fear and stigma are a bigger part of that choice than they might otherwise be if acceptance and providing community resources and integration were a bigger part of our social history instead.

And, you know, diagnosing developmental differences is one thing - tricky by itself - but determining how differences affect potential is even trickier. The very act of deciding a person has limited potential can limit their opportunities. I know a few people whose abilities were radically underestimated because of developmental diagnoses, and I've read of or conversed online with dozens of other disabled people whose lives have been seriously affected by judgments - faulty judgments - about their worth and ability.

Overall, I do think things are somewhat better now because institutionalization and abandonment of disabled children aren't considered the obvious solutions for families. And communities are actively struggling with the education of disabled children in public schools, which is a complicated issue but is, I think, much better than silence, shame and automatic segregation.

The daily difficulties that come from raising (or being) a developmentally disabled person and finding the resources and necessary support aren't an aspect of the disability experience I'm intimate with, but my perception is that while things have improved there is still a long way to go.

I think the main thing that nondisabled people don't necessarily know or understand is that developmentally disabled people are not this separate category of human beings. People tend to think, "We can do things. They cannot." And there's no line like that dividing all of us. There are shades of ability, varying talents that surface in surprising places. This is true for physical disabilities as well. Most of us, in the course of our lives, discover we have abilities or affinities for some things and lack talent elsewhere, so this idea that a certain class of people lack value or the ability to contribute inevitably underestimates and wastes a lot of human potential.

Dear Kay,

What a beautifully written piece with powerful sentiment. I'm not sure I can offer anything other than to encourage folks to read and then reread, but I wanted to let you know that you moved me. Thank you so much for writing it. I hope to see you again on Dr. Gupta's blog. Peace ---

I think the shame does linger on in some families. My child has a physical disability, but no mental impairment. When she was young we would go all the usual places and I would think, "Where are all the other disabled kids?" We only saw them at therapy or "special" preschool. To be fair, I do not know if this is the result of shame or just how exhausting it can be to go out with a disabled child.

I believe we were blessed with an extended family that had already very lovingly dealt with a brain-damaged child in the generation before. They saw her intellectual ability as a great thing and her disability as minor.

Our dealings with the public school system were both funny and sad. They seemed more prepared for kids they could train for basic jobs. They told me at almost every meeting that she was rare--a bright motivated disabled kid. Well, that is very flattering but we know that disabled kids run the gamut from profoundly mentally impaired to average to bright. I believe that no one expects much of the kids so the bright or average ones "live down" to their low expectations. Thank God for our families and a private school that assumed she could do what everyone else did!

As the parent of a child with higher functioning autism and mild mental retardation, whom was told by various "experts" within the public schools that he would never make it for one and that he was "just like everyone else", even at the same meetings, I feel that after 16 years; he is making a heck of a difference in society. Sure, he may not live totally independently, but may be able to be gainfully employed, possibly be able to be married, probably will not drive, but has been able to learn bus routes--while attending the last public school (life skills class). I have noticed that he has perhaps more to offer than what is deemed "normal" by many--and certainly comes without premeditated malice, which is uncommon in the society and times in which we live--so my experience is and has been that he does so much better in the "free world", uninstitutionalized and among others.
I have friends with physical disabilities, with brilliant minds, whom it would have been the most shameful thing of our times to have ever thought of forcing institutionalization upon--for they are the center and backbone of what is good within this world we live in--relying upon themselves only, and as a matter of fact, one of which I rely upon for the advice of which to base decisions not only regarding my son, but many business and personal ventures as well.
Assisted living is one thing, but forced institutionalization is as archaic of a practice as one could imagine--thinking much along the idea of arranging marriage for linear breeding, rather than marriage for love and partnership. It is simply the wrong thing to do--in the eyes of humanity and in the eyes of the person in which you are forcing it upon.
Thank you for the opportunity to air my thoughts and views.
Posted by Lisa.

Early diagnosis of developmental issues is stressed over and over, but there is another aspect we don't hear much about: "better late than never" diagnosis.

My autism diagnosis did not come until 1994 when I was age 46, following my son's similar diagnosis. Only at that point did my life finally start to make sense, in terms of what had happened and how hard some things had been. In the 13 years since, with a growing awareness of my nature and a good support system, my life has been transformed. It is not intuitive that an autistic person could return to college after 32 years and excel at sociology, of all things. But that's what happened :-)

Something else happened along the way, though, that points out the urgency of identifying undiagnosed adults with developmental issues: in an effort to cope with the social and academic struggles I had in my first shot at college in the mid-late '60s, I turned to alcohol. Most of the next seventeen years were spent in active alcoholism. Had I not received help for that in 1983, my autism diagnosis could never have taken place eleven years later, and I would still be doubly lost.

This isn't meant to be some noble, "overcoming" narrative, but rather a cautionary tale: how many other adults are out there with undiagnosed developmental differences/disabilities, and how many of them may have substance-abuse problems on top of it? Maybe we need some kind of program: "No Undiagnosed DD Adult Left Behind"...

In 1966, my mother had a pre-mature child who was diagnosed with cerebral palsy and learning disabilities. At the time, doctor's recommended that my mother institutionalize my sister. Whether it was naivete, age (my mother was only 19) or shear determination, my mother proved the doctors wrong. It was not easy. There were many hours of physical therapy and occupational therapy. My mother had limited support from my father (they divorced shortly after my sister was born), her parents or society. She had to fight for special services with the local school district (mainstreaming had just begun). But if you ask her today, she would tell you that it was well worth it. Today, my sister is 40+ years old. Lives with her partner; holds a full time job as a healthcare provider and is a fully functioning member of society.

Being the older sister of a disabled sibling was not easy. However, my mother's attitude and my sister's determination to succeed prepared me for one of the biggest challenges in my life. Approximately 30 years after my sister was born, I too had a premature child. My son was born 9 weeks early. At 6 months, his pediatirican indicated that he was not progressing as he should. This statement started the long journey to the diagnose of cerebral palsy, the endless hours of therapy and multiple procedures and surgeries. In a couple of weeks, my son will be turning 8 years old. We never made any allowances for his disability. We treated him like any other child. We worked with him constantly to learn the activities that come so easy for other children: feeding themselves, dressing themselves, walking, running, climbing stairs and riding a bike. Today after everything he has been through, you would never know that he was different. Has the hard work ended? Definitely not! It will always be a little harder for him to do certain activities. But he faces each new challenge with gusto and an outrageous sense of humor.

Was it easier for me to raise a disabled child as compared to my mother? Definitely! There are many reasons, but the most important being the change in society's perception of the disabled. There were many more services available to assist my family navigate this difficult road. There was never any mention of institutionalization. Our families rallied around us and helped whenever they could.

I am thankful to my mother and many other parents for rejecting the common thinking of the '50s and '60s. Without them, future generations of disabled people would have remained hidden and forgotten. Is everything perfect today? No. But I would like to think that we will continue to move forward and someday achieve a society where everyone is integrated and valued (disabled, elderly and ethnicities). Maybe it is wishful thinking, but I hope not.

I suffered from depression for some of my teenage years. I was lucky to find Fountain House NYC. There I could come and go as I pleased, this gave me choice. I could also work to help the club house function whether it was on the computer or sweeping the floor. I was able to get a part time temporary job for pay and this experience, this confidence lead to a full time job. I have not been depressed for the last 20 years.

As a disability rights advocate who works with developmentally disabled adults, I am intimately familiar with the challenges of perception this community faces on a daily basis. I think that the number of people who truly believe in and support these indivicuals'j full potential is a staggering minority, even among professionals who were supposedly trained to be the key supports for people with DD (social workers, nurses aids, teachers). That's the reality today, lest we feel it's time to pat ourselves on the backs about the amount of progress that has been made.

There is real danger in the use of langugage that suggests a hierarchy of disabilities- one that invariably implies that intellectual disabilities be placed at the bottom of the list.

I shared the articles with the DD group I work with here in Illinois. Many of the older members could remember the old insitutions, had lived in them and some of them still bear the emotional and physical scars of abuse incurred in such insitutions. They deeply appreciate this thoughtful coverage and wanted me to pass along their warmest regards.

Dear Kay,

Your post here made me sit stunned, and my eyes teared up because eight years ago with my own son, doctors were still suggesting that institutionalizing him would be "the better solution". The better solution for who?

I agree with your sentiment that it is difficult for education and opportunities, and yes, it certainly is. I had to move 2500 miles across the country to find the proper school for my son. However, now that they are actively trying to work with (instead of against) disabilites, the improvements to be found are astounding. My son, who was originally deemed autistic, is a highly functional Asperger's genius. I am very proud of who he is and who he will become.

I believe that you are a truly unique and wonderful person, and you really made me think, once again, about this subject. At the moment, I feel very sad about what has been done to individuals in the past. Everyone is a person, and all people, no matter what they are like, should be loved and respected.

I am the mother of a 24-year-old woman -- Gillian-- with developmental disabilities whose amazing life confirms Kay's comment that "determining how differences affect potential is even trickier."
I'm a documentary filmmaker and recently completed a film about Gillian's decision to move out of the house a few years ago.
She now lives in an apartment with another young woman, works at a nearby animal clinic, rides horses, takes dance classes, in short, she leads a life quite similar to the lives of many 20-somethings.
As Kay writes, most people believe that the main thing that divides people with developmental disabilities from the rest of us is that "We can do things. They cannot." That certainly doesn't define Gillian!
Check out the film and updates on her life at our website at www.thegillianfilm.com.

thanks for the blog,
Joanne Hershfield

Dear Kay,

I am impressed with your dedication to your child.

When we came to know that our son Parth is diagnosed as Highly Functioning Autistic and Doctor in Dubai told us that we have to teach him sign language and he can not able to speak in his life. Since then my wife, Manisha, spent all her 24 hours for our beloved son Parth. Initially she has to speak 1,000 times to teach 'A'. By God's grace he improved a lot and gets 1st rank in his school. Never ever we thought of institutionalized our child. I feel no parent should feel bad about their children's disability. God gave us these children only because God thinks that we parents can be institution for them and we will care them like no other will.

Thanks for the blog,

Manish Shah
Dubai

Ya, but on the other side of the spectrum who is to be judge and What would be better, repeatedly put in jail or for somebody with a developmental disability to be instutionalized where they could subcome to less frequent harmming sosiety by their actions?

It may just be me, but I thought your column was pretty obvious. If a man like Stephen Hawking can be disabled, how is it that we without physical defects can possibly feel superior?

I am not as well versed in the subject of care of a disabled person as these other people. I can also understand that this hits them on a much more personal level. But let's have a comment from someone who has never had to deal with caring for a person with a disability. If a man like Stephen Hawking can teach me things about the universe I never even suspected, then how can I look down upon a disabled person?

As a 43-year-old woman who struggled with Asperger's syndrome, before being diagnosed in my 30's, I certainly can relate somewhat to the issue of being different in a a cookie-cutter world. We have become a microwaveable world. Thanks to the industrial revolution, society no longer really appreciates anything, including others, because things that used to take years to be made can now be made in mere days, hours, or even minutes. It was only human nature that we would someday turn and see our relationships with each other the same way. We lost our patience, our millenian-old need to take things slow, including relationships. Today, if someone doesn't look perfect in the first five seconds they meet--poof! They're history. Along with the ease of creating things comes the ease of disposal--and that, I believe, is the core of today's problems with the disabled. I am employed but live in a homeless shelter, and every day, I mean EVERY day, I see more and more people, many of whom are disabled, who really are trying to offer something worthwhile to our world --if only the world would take a long, long look back. The disabled see a different reality, and that's why we humans evolved so well, because of our differences, not because we were identical. No really smart modern society would pass up such an offer--but then, from what I've seen, we're really not as smart as we think we are. How many Renaissance artists would be labeled today as disabled, or mental?? Back then, we appreciated their specialness, and gave them patience, compassion, and even sponsorship. Today, we'd see them as "different", throw them in institutions (or out onto the street), and call them welfare cheats.

I worked in an institution for the mentally retarded while in college. I couldn't believe some of the people who had been locked away from their families since they were toddlers. Many just had seizures as a child, and their parents were told to put them away. One went deaf while in college, and was locked away. Many had GED's and worked jobs. They didn't deserve to have their rights taken away. Many were loosing the ability to read and write or even think. This home looked great on paper, but they did nothing but house these people. They were the loneliest people on earth.
I vowed then and there I would never put my child in such a home. I am now in my 30's with three children. One of my children has an autistic spectrum disorder, but I will always keep my vow.

What kind of safeguards exist to protect the public from possible misuse of all of this?

I have a son with a developmental disability. I want to caution parents not to take all of the predictions of professionals too seriously. If I had listened to all of the professionals, my son would not be doing nearly as well as he is today at age 14. I was once told to place my son in a class with children who were barely verbal. A psychologist once told me my son would never be able to read a book with more than one sentence on a page. It has taken a great deal of work, but my son is mainstreamed for many of his classes and reads at a 6th grade level. He also has a great personality, is very well-liked, and has no behavioral issues. I encourage parents to be patient, educated, hopeful and make sure your children know you love them. Your child will not suceed unless you are a great advocate for them.

Cathy Sutman
Linwood, New Jersey

I think this is written good and makes good points. I am disabled and have worked hard to try to build a life and they way our society works it is an almost impossible task.

If anyone would like to see the work I do and read about battles I am forced to fight, my blog is at www.light-and-illusion.com.

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