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We recently celebrated Independence Day in the United States. We celebrate with parades, picnics, baseball, concerts and fireworks. I am not sure how many people actually took time to reflect on our independence but I thought a lot about the independence I take for granted. Not grand independence like freedom from tyranny or the right to vote but the independence that most people with disabilities still do not have.
Last night, I went out to dinner and ate too much. Then I took my 5 and 7 year old nieces out for ice cream- way past their bedtime. This morning, I decided to sleep late. I went to the gym and worked out for as long as I wanted. Spur of the moment, I met a friend for coffee. I decided to skip breakfast and have lunch before noon. I ate popcorn after my early lunch because I felt like it. I haven’t made my bed.
The point I am trying to make is I have the independence to control much of my life. Sure, I have obligations and responsibilities but I don’t ask permission from anyone about when I go to sleep, wake up or what I eat or when. I am free to be with whoever I want. I can do things spontaneously, like keeping my young nieces out after 10 PM- or occasionally bending the rules, like when small children should go to sleep.
Most people with disabilities who depend on others for care, do not even have even enjoy this level of independence. Caregivers often make the decisions about these simple acts of daily living without input from the people they serve. While we work for the full inclusion of persons with disabilities in major areas of life, such as economic security, employment, housing, education and religious life, let’s not lose sight of the very important rights to independence:
The right to choose your friends.
The right to set your own schedule.
The right to eat when you want.
The right to skip your chores for another day.
The right to take risks.
The right to skip breakfast and eat popcorn.
The right to make bad decisions.
I have personal and professional experience. As a professional, I have seen the loss of dignity that comes when others make the decisions about when a person gets up, showers, exercises, eats and controls their access to friends and even family.
Personally, I have worked hard to make sure that my son Jon, who has Down syndrome, has as much control over his life as possible. I may not like all his decisions and choices- he stays up until after midnight most nights, he drinks too much diet soda, he has had way too much success in trying to taste every kind of beer in the world. But I work hard to smother all my maternal instincts and let him live his life and respect that he is 35.
It is hard sometimes and occasionally dangerous. Jon does not like to bother people and when he was sick recently, he minimized his symptoms. He has a complicated cardiac condition and in the area of his health, I draw the line. I choose his physicians but he makes his treatment decisions.
We don’t have to wait until next July 4th to start our own kind of fireworks, where people with disabilities get to control their own lives and the rest of us step back.