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An Introduction to the History of the Disability Movement

KosAbility is a community diary series posted at 5 PM ET every Sunday and Wednesday by volunteer diarists. This is a gathering place for people who are living with disabilities, who love someone with a disability, or who want to know more about the issues surrounding this topic.  There are two parts to each diary.  First, a volunteer diarist will offer their specific knowledge and insight about a topic they know intimately. Then, readers are invited to comment on what they've read and/or ask general questions about disabilities, share something they've learned, tell bad jokes, post photos, or rage about the unfairness of their situation. Our only rule is to be kind; trolls will be spayed or neutered.

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"Over the last century, our lives as disabled people have improved because we have fought for our rights. We have refused to allow people to crush our dreams. While our victories have been great, we have much further to go. True equality will be obtained only when all disabled people create and fulfill their dreams, and fight for the rights of all."
Judy Heumann.

A child with a disability changes a parent’s perspective on just about everything.  Your goals change, life plans change, the needs of your child color every decision you make.

I never planned on being an advocate, my plans were to go to college,  get married, have kids and teach school. When my daughter was born with cerebral palsy, a lot of stuff I never planned on happened. As I learned more about disabilities and disability services I became aware of the need for the system--whatever that was--to change. Before long I found myself creating parent groups, and networks for parent trainers, service providers, and educators, all in an effort to establish better communication and better services for kids with disabilities. A few years later I  was working for Head Start  as an advocate for young children and their families. I managed to find my voice and the courage to stand in front of  audiences to share my story and teach parents about their rights, helping them learn how to navigate service delivery and special education.

Long before my efforts to speak out and make change happen , so many others--gave their time and energy to ensure my daughter, and my Head Start kids would have an appropriate public education and support for their disabilities. Those advocates protested and faced jail time so that buses,  sidewalks and bathrooms in public places would accommodate wheelchairs...My daughter and I have never known any other world save for that in which we have rights--- rights protected by laws.

Before my daughter came along, my exposure to the lives of disabled people was very limited.  The only remote connection I had was to my husband’s sister Connie. And as Connie was a forbidden topic in his family, what I knew for years was precious little. After my mother-in-law passed away in 2000 I learned the whole story about Connie from my husband’s aunt. Nothing could have prepared me for that story. My husband and the majority of his family believed Connie had died when she was very young, but that wasn’t true. She was alive and living in Lubbock Texas. To say we were shocked is beyond a mere understatement, no one present when that story was told could believe Connie had been held in secret for over 40 years. But that’s exactly what had happened.

Connie was born during a time when keeping a disabled child at home was taboo, even shameful. To keep a child with disabilities at home was considered an act of selfishness, as that child took precious time away from the rest of the family and the family’s resources.

When Connie was born she looked perfect, there was no way to tell she would have significant developmental delays and a seizure disorder. My mother-in-law didn’t know of any way to address the delays other than to love her daughter, work with her, and try to help her move along.  Shortly after her second birthday Connie had the first of many major seizures. At the time my husband’s grandmother owned and operated a home for elderly people, she had worked with enough older people with disabilities to know there was something seriously amiss with Connie.

My mother-in-law fought to keep her child home, absolute in her belief that enough love and prayer could cure Connie. Eventually Connie’s seizures grew to the point of endangering her and my mother-in-law was left with no choice but give her up to the state and place her in a state run facility. So at age six, Connie was placed in the Abilene State School.  When my husband’s parents came home from taking Connie to Abilene, my mother-in-law’s relations had removed all traces of Connie from their home. It was as though she had been erased. On the advice of the state school, my in-laws decided tell their sons Connie had died at a hospital. That was the last my husband heard of her. This was the norm, young children were placed and families were told to forget. This is how the world of institutions worked  and would continue to work well into the mid 70’s when social perceptions about children and adults with disabilities began to change.

I have never judged nor condemned my mother-in-law for the choice she made. The world was a different place back then. My husband and I couldn’t change the past, but we could change the future and that’s exactly what we did. For four years we traveled to Lubbock every chance we got. We remembered her birthday, Christmas, every holiday including Halloween! We did that until Connie became very ill. When her illness left her weak and unable to move about in her wheelchair we made the decision to have her moved to a nursing home in our home town so we could see her daily. She passed  away in January of  2008. We scattered her ashes on piece of family property when the bluebonnets were in full  bloom that April. She is never forgotten and she always loved.

Connie Age 9                                 Connie 2006
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Over three decades went by before Connie left the state school She spent the greatest part of her life in an institution. While she was there the disability movement began. Taking cues from other minority groups demanding their civil rights be addressed, disability activists, both disabled and able bodied took up signs and protested.  They engaged in civil disobedience, protested on public streets, staged sit ins, and blocked entrances into public buildings and mass transit facilities. They began to build and organize the machine that would  push congress into passing laws guaranteeing  public education for children with disabilities, access to federally owned buildings, access to mass transit, and accommodations for elderly people and people with disabilities to exercise  their right to vote.  

Their determination would ensure The Rehabilitation Act of 1973 contained language  protecting the civil rights of people with disabilities. In 1990, the American Disabilities Act would become law removing barriers and prompting accommodations for wheelchair friendly bathrooms and ramps in the private business sector. Under ADA, housing choices would be left up to the individual based on their needs. Employment in the private sector would have protections barring discrimination in hiring practices and job performance.

For Connie the laws enacted over her life span, didn’t really impact her, except for one. The Olmstead Act. Part of ADA, Olmstead  gives people living in institutions the right to choose community based living options. For Connie this meant a move to Lubbock, the opportunity to live in a home with other women with disabilities. For the first time in her life she could go shopping, go to church, go to a swimming pool. She could do things almost everyone takes for granted. She could at long last be in the least restricted environment with her needs supported. This is where we found her, living in a group home as part of a community.

In moments of reflection when I think about my daughter’s world  and that of her aunt --the difference in services and care is so vast, so night and day different it is impossible for me to imagine Connie’s life without crying. From the time my daughter was diagnosed with cerebral palsy, she has been in some sort of program providing her with therapy and medical help. There has always been a plan in play to give her the best quality of life possible. My daughter was born the year  ADA was signed into law. There has never been a time when we wondered if she would go to school, our biggest concern was when she would go to school. The Individuals with Disabilities Education Act  (IDEA), ensured Chelsea would receive an education. When she was ready to move out and be on her own, the Olmstead Act assured her the right to choose where she would live. All her life there have been laws to protect her and provide for her needs.

Brian and Chelsea

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Connie was never afforded the opportunity to go to school, she was 46 years old when a social worker taught her to recognize colors. Learning that little skill enabled her to take part in a workshop where the group home communities made rag rugs to sell at various art fairs and community events. Her job was to sort the rag strips into the correct piles by color. I know that sounds trivial, even patronizing, but consider for how long her daily routine had been crawling around on a floor all day or restrained to a bed, to be active and engaged in a even a small task was a source of happiness for her.

Chelsea lives in a group home with all kinds of support. She made the choice to move out and be on her own.  The same law that made it possible for Connie to leave the state institution provides for my daughter to have a choice about where she lives. While my husband and I are her legal guardians, she makes the choices about her life, she chooses to work, to go shopping, to be with her friends. No one can take her voice away. She has family, friends and professionals who will wage war on anyone or any entity trying to take her right to choose away.

But there are those without a voice, those with severe disabilities, those with intelligence disabilities, those without family or friends to stand between them and injustice. Even now we have people in state institutions or nursing homes who are not getting the care they need, who are subjected to the old model of custodial care. In a time when the national social consciousness has begun to recognize a person’s disability isn’t the problem,  that the problem lies in access to the community and supports to make inclusion possible--even with that mindset growing among our society--the old model is the one the majority of states chose to cite as the most ideal.

Time and time again studies have shown the old custodial model to be more costly and community living more cost efficient. Allowing people remain in their own homes or go to group homes with an aide or other supports is more budget friendly and far better in the long run because it enables people with disabilities to be more productive, more engaged in life. Why so many states believe the institutional/custodial model is the best choice, I don't know. I have never been able to understand the reasoning behind that decision.

Because of the recession and budget woes, one of the first line items to hit the chopping block is programs for people with disabilities--Advocate agencies across the nation are concerned the budget cuts will be the excuse given to lessen community living accessibility and swing back to the institutions as primary care centers. Some states have filed law suits against Olmstead claiming it is a violation of states rights to demand states provide community living access for people with disabilities. Limited funding has already created waiting lists for services, some states have a wait time of 5-10 years. Cutting funding again, will in all likelihood increase wait times even more. To be clear, Olmstead and community living access are under fire. Community aide assistants are being cut out of budgets leading to some elderly and disabled people going without necessary help to manage their daily lives. In some cases this could easily prove to be fatal  should they get hurt or become ill without someone on site to help them.

We celebrated the 20th anniversary of  ADA this year. The ideals and principals are still sound, but the test cases for ADA have shown the Supreme Court majority to be woefully ignorant of the intent and scope of ADA. The court majority is  hostile to implementation of the act as it stands, leaving further, more definitive legislation as the only viable means to truly protect people with disabilities in the work place.

IDEA is getting closer to a "reshaping"  by the current Education Secretary because he doesn’t understand  the Individualized Education Plan  (IEP) is a tool used to create an appropriate way to teach a set of skills to a student with disabilities, with a means to measure success. It is not tool to decide pass or fail. The concern for parents and advocates about the Department of Education’s nationwide core curriculum plan is that it suggests all students should be in classrooms under the guise of  inclusion--Monies will be allocated to qualifying schools to help with inclusion supports, however the funds will not have any means to insure it is spend on inclusion. Some children will never be able to tolerate the classroom, show me how making an autistic child sit in an English class or a history class is going to be of benefit to his success and I’ll be the first one to join in the chorus to make it happen.

These are just a few of the current issues. It is up to the disabled community, advocates, families, friends and professionals working with disabled people to challenge the powers that be and protect the rights and laws given to people with disabilities.

The point of this diary is to share a snap shot view of the world before disability activists demanded to be included in society, and contrast that with the world we live in  now where laws have been passed to protect disabled citizens. I’m not asking you take up signs--but I am asking you to know the rights of people with disabilities. Know what your state is doing for people with disabilities or what your state is not doing for people with disabilities.

Throughout this piece I have referred to bits of history related to the disability movement. In October I will begin a series of dairies covering the story of the disability movement beginning in the 1800’s with the introduction of schools and institutions in this country. It’s a long and at times sad tale, but it also tells the stories of people who were brave and inspiring and determine to bring about change. To them we a great deal of gratitude is owed, and yet they are relatively unknown to many. I hope to change that through sharing their story and their accomplishments.

Link to a very moving video clip about waiting lists...

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Originally posted to left over flower child on Sun Sep 05, 2010 at 02:01 PM PDT.

Also republished by KosAbility.

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