Monday, May 24, 1998
Freedom lies in true equality
For disabled, life requires trade-offs
BY DEBORAH KENDRICK
The Cincinnati Enquirer
There are certain kinds of freedoms you give up when you have a disability. Painful to think about, they are rarely discussed.
But life is full of trade-offs, and the good might look even better if we recognize the difficulties for what they are. I'm talking about the freedom to choose when and how some of our most basic functions will be performed.
My first poignant realization of this lack of freedom was probably back in graduate school. My friend, Sue, was tired. She'd had a long day of studying, visiting with friends, doing what college students do.
Now she wanted to go to bed. She happens to be quadriplegic, and she couldn't go to bed because Ellie, our other roommate - and her personal attendant - hadn't come home on time. There sat Sue in her wheelchair, wanting to go to bed, needing to go to the bathroom, and without the freedom to jump up and do so.
A helping hand
It turned out Ellie was stuck in a snowstorm for hours. Eventually, Sue trusted me to help her - and we shared one of the more cherished and humbling moments: When one human being trusts another to form the necessary bridge to such essential human freedoms, it is a privilege indeed.
Last week, during the annual meeting of the National Council on Independent Living, some 700 people with disabilities met with their Congressional representatives in Washington to talk about bills that essentially add up to reclaiming those basic human freedoms. Common sense tells us why it's the right thing to provide systems where everyone has similar choices and freedoms.
This is not a call for sappy sentiment. Rather, it's an honest examination of what it means to be in the skin of someone who has lost the use of a major life function and how the gap to a fully independent life can be bridged. A person with a disability should have the freedom to choose to live at home with adequate assistance or in a nursing home.
Parents of a child with a disability should have the same range of options for educational content and environment as the parents of non-disabled kids. People who have studied and trained and earned appropriate qualifications should have the privilege of holding jobs and paying taxes.
These are the big things in life, you say. Indeed they are - and imagine how much further out of reach they can seem to someone struggling with the little stuff.
If you're deaf, and you want to go to a play, you can't just look at your calendar and buy tickets for your best friend's birthday or your wedding anniversary or the night you have off work. Instead, you find out when there might be a performance including sign language, and you go then.
If your disability prevents you from driving, hundreds of little freedoms are missing every day. You can't opt to drive instead of walk when a rainstorm bursts forth. You have to plan ahead to go out to dinner or on a shopping spree.
Worth the effort
The pleasure of being there is the same but to get it done, you need the driving ability of another person.
My assessment of such obstacles has always been that it's generally worth the extra planning and inconvenience to have the resulting joy of participating.
The trade-off, in other words, is worth the effort. But sometimes the trade-off isn't there, and there's just no way to get to the bathroom.
If you are in a position to make decisions that could impact the lives of people with disabilities - in the community, government entities or a place of worship - you can be part of an overall solution to real equality.
Ask yourself as issues arise if a certain decision will enable or prevent people with disabilities from even making the choice.
Deborah Kendrick, a Cincinnati free-lance writer, is a nationally recognized advocate for people with disabilities. Write: Deborah Kendrick, Cincinnati Enquirer, 312 Elm St., Cincinnati 45202; e-mail: 71340.473@compuserve.com.
KENDRICK ARCHIVE
