Multiple Sclerosis

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I’ve been disabled in one way or other all my life. For the decades my Multiple Sclerosis went undiagnosed, they said the periods of time my MS drove to my bed were disabling bouts of depression–that the progressive numbing of my body was nothing. They were wrong. I was having bouts of MS. They call it Relapsing Remitting. It comes and it goes.

There was a tremendous stigma to depression. I bore it. I had no choice. I pursued my degree in psychology, vowing to heal myself. Then came the diagnosis of advanced MS. They finally had it. All those years I had been convinced my illness was in my head now engendered anger at having been dismissed so handily. Lazy doctors had deemed me crazy instead of sick. But the clincher was when I discovered that early diagnosis could have slowed the progression of my disease.

Why use my story as an example? What has happened to me has happened to others—many others. I am merely a conduit for shared experiences.

So now that I have shed my previous diagnosis for an actual malady have things changed? No. Now I have a crippling, disabling disease that I cannot hide. I amble along carefully in my gait; I slur my words as if I’m drunk; the disease has stolen some use of my hands. In order to allay the possible impression that I am merely drunk, I have to disclose my disease.

I finished my degree in psychology and tried to acquire a job on my own. I was unsuccessful. People do not typically hire the disabled. I went to an organization I thought had a network of people who actually hire disabled people and found them to be ineffective. The Massachusetts Rehabilitation commission simply tells you to go out and find a job. Their title is exactly what it seems—rehabilitation. There is no rehabilitation for me. The expectation is that you can return to wellness and run out and succeed. They apply a notch to their belt every time this happens and tell the disabled they’re better off not trying. I got the impression they were telling me to just go home and die. People just don’t hire the disabled. The MRC does not have a network of those who hire the disabled.

If you have a job and become disabled, you’re all set. They can’t fire you because of your disability. They can’t tell you they won’t hire you because you’re disabled. You can sue them. The Americans with Disabilities Act takes care of that. But they can just not hire you. Most don’t even have to give a reason, and those that do find some lame excuse.

Now that I know I will probably never find a job because I’m disabled I’ve taken a different course. I’m trying to volunteer for positions. I recently tried to volunteer for a CASA position—A Court Appointed Special Advocate for children. I had to disclose I suffer from MS. A phone call came just a few days ago from Felicia—my interviewer. She told me I was over-qualified. I know in my heart my disqualification resides in the depths of disability. Because I would have to disclose my illness in order to not further traumatize possibly traumatized children, I was a no-go. The disabled should not be seen or heard. The disabled are scary.

I refuse to just go home and die. I am here, and I am speaking out. I have worth. You must see me. I will not go away. My situation speaks to the thought that many seeking connections with the outside are denied those connections because they are seen as diseased relics who are to be avoided. How dare this happen. What have we become? Yes—I say we because regardless of my circumstance, I am part of we—whether you like it or not.

Copyright 2017 Joyce Bowen

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About the Author: Joyce Bowen is a freelance writer and public speaker. Inquiries can be made at [email protected]

Sobre el autor: Joyce Bowen es un escritor independiente y orador público. Las consultas pueden hacerse en [email protected]

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