Independence and Children with Disabilities

by

Tamar Mag Raine

I have lived on my own since 1975 when I left home to go to a small college in Redlands, California. Thankfully I was well prepared for this new phase in my life. You might ask why I’m writing about this.

A few days after I was born, I became quite ill, my bilirubin levels were sky high and it blocked oxygen to my brain and I developed cerebral palsy. I was quite sick for nearly nine months. My family didn’t know how well I could hear or see at first. My mother had trouble feeding me because I couldn’t suck or swallow very well due to lack of muscle coordination, and my head would spasm backwards. In general I didn’t feel good so I would cry a lot, and didn’t feel like eating until my mother introduced me to chocolate pudding which she put into a lot of my other foods. She also had problems diapering me. My legs would lock together because my muscles were so tight. My mother and father had no idea how to help me.

Slowly, my vision cleared, but I have no idea if my hearing got better or not, or if it remained poor throughout my infancy. When I was one year old, I was taken to Chicago to be seen by Dr. Meyer Perlstein, a specialist in Cerebral Palsy. He ran me through every test he had. At the end of the day, he told my parents, “Yes, your lovely daughter has cerebral palsy, but she is very bright and charming. I think eventually she will walk and talk, and even dance if she wants to. It will take commitment, so you can’t sit on your laurels and expect it to happen by itself.” He prescribed physical therapy and short leg braces. Thus began a lifetime of PT, OT, and Speech therapy. When we lived in Kansas my mother had to drive ninety miles each way to get me to PT. I first stood and walked by myself when I was five.

I remember things clearly when we moved to Southern California when I was six, and my parents started giving me chores to do around the house. Keeping my room clean, emptying the trash cans, feeding our beagle, setting the dinner table, weeding the yard. I remember sorting laundry with my mother when I was home sick from school.

Independence starts in childhood when the child is given a task, or some kind of responsibility. It builds confidence that they can achieve something they set their minds to. It also helps to teach that their actions have consequences both good and bad. All this helps your child to become independent as they go through their education and helps build self-esteem. When they go to live on their own, you know that fundamentally they can do it. Of course there will be mistakes. I do not know anybody who hasn’t made mistakes; that is how all of us grow. After a few mistakes, eventually you will have a fully independent young person ready to tackle the adult world.

Every child can do something to help out, you need to be creative. Perhaps you have an early bird who can act as the family’s alarm clock. Maybe they have siblings and they can read to them, or teach them how to tell time, or guide the siblings through making dinner, or brownies.

I have attended a few conferences for people with developmental disabilities, and I am happy to say that the more parents and teachers EXPECT from children with cognitive disabilities, the more they achieve. So it’s very important that these children get into Headstart, or other early childhood intervention programs. Parents need to be assertive in making sure their children have appropriate IEPs, communication devices, wheelchairs.

These days, people with Down syndrome are attending college, trade schools, holding down jobs, and living on their own with a little assistance. No longer are they in sheltered workshops doing repetitive busywork that neither helps them grow, nor helps them learn a useful trade or become independent.

My parents were tigers in making sure I had what I needed, and that taught me how to advocate for myself and others. At times I resented my mother pushing me so hard when I was a teenager, but as I got older — in my twenties and thirties, I realized why, and came to really appreciate it. My mother was a clinical social worker, and knew the fate of many children who had to go live in institutions. She did not want me to befall that awful fate.

Those days, however may come again, if we don’t continue to fight for ourselves and our children. Unfortunately, old stereotypes die hard, and we must fight for our rights, and hold politicians accountable for their budget decisions and policies.

Sadly, President Obama has shown in his speech on the 19th anniversary of the Americans with Disabilities Act, that he truly does not understand that the rights we are still fighting for, have more in common with the Voting Rights Act than he is acknowledging. In that speech, he extolled the virtues of Michelle’s father who woke up one day with Multiple Sclerosis, but who kept going to work in the factory, never asking anybody for help. I can’t help but believe that in his private thoughts, her father WISHED he didn’t have to walk up and down the stairs, among other things.

Mr. President, I assure you, that people with disabilities ARE “overcoming” great obstacles, in everything we do. It’s not about denying our needs as Michele’s father did. It’s about full integration into society, and part of that is making sidewalks, parks, trains, buses, and buildings accessible. It’s about children appropriately educated instead of isolated in a classroom for kids with many different types of disabilities where a child with Down syndrome will not be challenged to keep achieving more and more. It’s about NOT being ashamed of asking for help that is truly needed.

It’s not about being able to get dressed or feeding yourself. It’s about having the dignity of helping hands that enable those who can’t do those things. Their minds, hearts, and souls may outshine many able-bodied people. It is truly a shame that so many people with disabilities are unemployed. We have so much to offer this country, and yet, just as people of color still have to overcome prejudice, so it is with people with disabilities.

We WANT the opportunities that every other American has. Power wheelchairs, communication devices, and the Personal Computer have enabled more people with disabilities to participate more fully in American life than ever before. But if we have nobody to get us out of bed, get us bathed, dressed and fed in the morning, then our talents will go to waste.

This is why we overwhelmingly want the Community Choice Act included in the Healthcare Reform bill. 44 years ago, Congress created Medicare and Medicaid. Medicaid and Medicare were written at a time when disability was seen as medical problems, prior to the Disability Pride movement. The result has been that people have had to live in nursing homes because the funding has not been there for them to get assistance in their own homes or apartments. Many studies have shown that it is much less expensive to support people out in the community than nursing homes. Things need to change! We have disabilities — we are not sick! There is no reason for us to be living in nursing homes, except for the fact that Nursing Home lobbyists line the pockets of our politicians.

I have been on my own since 1975, my body has had a few bumps since then; car accidents, fibromyalgia, and arthritis, have caused me pain since 1990. I have hired helpers who assist me with chores. I have maintained my independence, and quickly fire anybody who repeatedly forgets that I’m the boss! I am active in my community, and for the last six years I have sat on the Mayor’s disability commission in my city. I have tried unsuccessfully to find employment, but have decided to work for myself. To me, the day I lose my independence is the day I begin to die.

What we think of as independence, in this day and age, is actually INTERDEPENDENCE for most people in the USA. Unlike our fellow citizens in the past 200 years, most of us do not know the first thing about building a home, and we live with conveniences that take us far away from the cows, pigs and crops. We no longer sew our clothes, kill the pigs, or collect eggs from the chickens. I would challenge President Obama to wake up from the fantasy he has about his father-in-law. It is not the reality of today’s world. I could as easily write my own version of a fantasy about the hard-working Mexican lady who used to clean my mother’s house. Think about it.

Tamar Mag Raine is a woman with cerebral palsy who is an artist and writer. She has over 30 years of being an advocate on behalf of civil rights for everybody. For the last six years, she has served on the Oakland Mayor’s Commission on Persons with Disabilities. She lives independently in her own home with the aid of her personal assistants.

cafepress.com/Tamarmag

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