All About Multiple Sclerosis

More MS news articles for December 2002

I'm Not An Outcast

http://www.lww.com/productdetailresults/1,2265,32924820,00.html

Dec 1, 2002
Karen Zielinski
Real Living with Multiple Sclerosis

Dear Karen,

I finally quit my job. I was an elementary school librarian, and after 35 years decided I wanted to do something else with my life. I want to travel, spend time at museums, babysit and make cookies with my three grandchildren, and read at a leisurely pace. I've been diagnosed with MS for 22 years. I usually walk with a cane, although I use my electric cart for longer distances.

I'm excited about my retirement but was bothered by a few of my colleagues' responses regarding my reasons for retiring. Some asked me if I felt that my disability was forcing me to quit so I could stay home and rest my body. The comment that really threw me for a loop was from the person who said to me, "I feel your pain of being considered an outcast because of your condition. I don't blame you for wanting to leave the workplace." These are educated people! What planet are they from? I was shocked at their attitudes toward disability.

Marie

Las Vegas, NV

Dear Marie,

Well, it sounds as if you had a very interesting retirement party! Your colleagues probably didn't mean to offend you, but they showed a lack of sensitivity and knowledge when it comes to a person who is living with a disability. People might have college degrees but still can be lacking in accurate understanding of disability issues.

People all over the world retire for the same reasons you did. Let's say that you could perform all your job objectives-then I think your colleagues are assuming you need rest because you have a chronic disease. People without disabilities experience fatigue after a full day at work too. People who don't have disabilities sometimes do not achieve their job objectives even though they have no physical impairment.

"I feel your pain of being an outcast because of your condition. I do not blame you for wanting to leave the workplace." This comment really ticks me off. This is one of the many myths of disability. Sometimes, because we have a disability, people think that we lack the competence or health to perform a job. Society's attitude toward those with disabilities is often more of a disability than having to use a wheelchair or not being able to see well. An attitude that limits those with a disability is a greater barrier than a flight of stairs. I'm tired of patronizing attitudes toward persons in wheelchairs who work full-time and are considered "courageous" or "brave." These social attitudes need correcting. So, whenever I can, I usually say to a person who tells me I'm an inspiration to them, "Thanks, but I do just what you do!" or "Get me on a bad day!"

I don't feel like an outcast, because I'm not an outcast. I'm determined to be a part of my world. I refuse to take "no" for an answer when it comes to work, travel, or study. Technology is a wonderful bridge in helping those of us who have special physical needs. I feel my role is to gently advocate for those who do not see, hear, or walk like most of society.

That is why, when a reporter published an article and wrote, "Karen is a victim of MS" I called her and gently reminded her that I was a person with MS and not a victim. Language represents our reality, and it's important.

A local nursing home recently held wheelchair races. I felt it was not a sensitive thing to do because those without a disability raced in wheelchairs too. It wasn't done maliciously but still represented a stereotype that brings negative attention to disability. I talked to the facility director and told her I felt it wasn't sensitive to people with physical limits.

In the same vein, I think that your colleague's comments that you'd probably quit because you didn't want to work with colleagues who had some "attitude" about your disability is disturbing. I don't know what they meant, but something tells me that a few of your coworkers might have some anxiety themselves toward people with limits. When people don't understand disability, they might shy away from it.

My advice to you is to talk to that coworker and ask her if she felt uncomfortable. Then tell her how you feel both physically and in your heart. Be gentle with your words, and speak from your heart. The National Multiple Sclerosis Society sponsors a program titled "Knowledge is Power." In this situation, telling a coworker your feelings about people's perceptions of your limits will hopefully educate someone who might never have been enlightened on the more subtle points of disability.

I feel that the more I can dispel myths or questions about disability, the more people are comfortable about it; thus my life gets easier. People can then start looking at how much we are all alike and realize that nobody's perfect.

Peace,
Karen
 

© 2002 Real Living with Multiple Sclerosis