The invisible woman in a wheelchair

By RUS COOPER-DOWDA

© St. Petersburg Times, published October 22, 2000

Long ago and far away, I was a disability peer counselor. To say that such work is living in the trenches is a major understatement. My "beat," as it were, was visiting people with disabilities who lived in nursing homes and helping spring those who wanted out. I spent the most time with younger people who were inappropriately institutionalized.

I was mistaken for a resident so often that I bought an orange traffic safety vest and embroidered on it, "I AM NOT A RESIDENT."

I would hang that message over the back of my wheelchair before going into any of the nursing facilities. I thought, since staff mostly talked to my back when they thought I was an escaping inmate, that being harassed might stop. Wrong! I found out, much to my amazement, that not only were the staff not coming around to view my front, they weren't paying that much attention to my back, either.

It was my wheelchair by itself that was setting off their bizarre responses. Once when I was folding my wheelchair to leave a home by taxi, a nurse ran out, grabbed my brand new, top-of-the-line wheelchair seat and took it back into the building. Her reason? I was supposedly "stealing" their equipment.

Another time, a nurse swooped from behind, ignored my flaming orange vest, and told me I was on the wrong ward. Saying she would return me as soon as she could, she locked me in an unlit closet. That's how I learned my safety vest glowed in the dark.

After finally finding the switch, I had light and immediately broke out laughing. Why? Nurse Kind Head had locked me in the drug closet. What a waste it was to be locked in with piles of drugs only after I was successfully clean and sober!

I was trapped there until meds were given out on the next shift -- four long hours of waiting.

Another time I came to a home to facilitate a group therapy session for the younger folks. As soon as I got in the door, a nurse grabbed the back of my chair, never looking at me, of course.

I said that I was there to do counseling. She replied that counseling was only on Thursdays and that I had to return to my room. She pushed me into the ward for younger people and left. I was dressed in a suit, had a briefcase on my foot rests and had the killer orange sign on the back of my wheelchair. And it was Thursday!

There was the time that I brought my baby son with me because my sitter had canceled. As soon as I got in the door, I took him to the nearest low, flat surface I could find to change his diaper. In the midst of that smelly job, an employee came up, took my stinky son away (sans diaper) and said, "You are not allowed to get intimate with the children of visitors."

It was beyond her imagination that I could be an "outside parent" with disabilities. (I have lupus, an auto-immune disorder). I chased that employee all over the home for almost 30 minutes before I could get my kid back! I kid you not!

Every now and again, I would accept the invitation of a client to eat with him or her at the nursing home. This was supposed to be quite legal. In the reality of the staff's collective mind-set, it was not. More than once, staff would come and take all my silverware because I was supposed to wait until an assistant had time to feed me.

I started carrying my own set of plastic flatware just in case.

Two acts by nursing home employees bothered me the most. One was the laughing response I got every time I said my husband had dropped me off and was picking me up. It was beyond their comprehension that a young woman in a wheelchair might have a spouse. They thought I was lying when I told them he was a doctor.

But what really stuck in my craw was the staff habit of taking over the propelling of my chair without notice or asking, and whole conversations they would have with me and about me without ever looking me in the face.

I complained all the time. But no matter what I said or who I talked to, no matter how professionally I was dressed, no matter how screaming orange the vest on my wheelchair, I was invisible to them as anything other than a lost patient. I never was seen as a person like themselves.

Holly Near, a wonderful songwriter and singer, has a great anthem called We Are a Gentle, Angry People. It is a truly moving song. But, based on my experience, you'd think that all those angry people she sings about are unnecessarily institutionalized people with disabilities and the peer counselors trying to spring them.

Rus Cooper-Dowda is an online minister, a line of work she says she turned to in part to make her disability and her wheelchair a non-issue. Her favorite class to e-teach is "Star Trek Theology."

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