Disability
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.
""""
Articles from Joyce 🐝 Bowen Brand Ambassador @ beBee
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Comments
David B. Grinberg
7 years ago #45
Lisa Gallagher
7 years ago #44
Joyce 🐝 Bowen Brand Ambassador @ beBee
7 years ago #43
Thank you, CityVP \ud83d\udc1d Manjit for your welcomed words. You always have so much to say and make so much sense. Thank You
Joyce 🐝 Bowen Brand Ambassador @ beBee
7 years ago #42
Gert Scholtz Thank you for your strong words. We will--I want to say--overcome, but I'd like to think I have in my own way.
Joyce 🐝 Bowen Brand Ambassador @ beBee
7 years ago #41
Deb\ud83d\udc1d Lange Thank you so much
Joyce 🐝 Bowen Brand Ambassador @ beBee
7 years ago #40
Helena Jansen van Vuuren Your son sounds very brave. I know he will accomplish his dreams.
Joyce 🐝 Bowen Brand Ambassador @ beBee
7 years ago #39
Dorothy Cooper Here's hoping for the best for you.
Joyce 🐝 Bowen Brand Ambassador @ beBee
7 years ago #38
Thank you very much, Franci\ud83d\udc1dEugenia Hoffman
Joyce 🐝 Bowen Brand Ambassador @ beBee
7 years ago #37
Thank you, debasish majumder. for your kind comment.
Joyce 🐝 Bowen Brand Ambassador @ beBee
7 years ago #36
Thank you for your comment Cyndi wilkins. Yes--my past with my children brings me some measure of peace.
Joyce 🐝 Bowen Brand Ambassador @ beBee
7 years ago #35
Milos Djukic
7 years ago #34
Cheers Joyce Bowen!
Joyce 🐝 Bowen Brand Ambassador @ beBee
7 years ago #33
Joyce 🐝 Bowen Brand Ambassador @ beBee
7 years ago #32
Helena Jansen van Vuuren
7 years ago #31
Cyndi wilkins
7 years ago #30
Write on Ian Weinberg and I were conversing earlier on one of my posts to which she commented: "I've been told by some that my Multiple Sclerosis was most likely caused by the trauma I suffered as a child, and I do, indeed, feel that fear screaming through my body when I write about certain things. But I continue to do so in the hopes that my psyche--and body--will become endured to the effects of that trauma and it will simply become a story to tell." Keep telling your story Joyce...because it is the story of so many others that do not share the power of the pen...be it that they do not or simply cannot write, let alone speak, for themselves...I will tell you here what I was going to tell you on my post...You my friend, have stopped the cycle of disease in your family by not spoon-feeding the same bile of abuse to your own children...I hope that thought brings you some measure of peace.
🐝 Fatima G. Williams
7 years ago #29
Joyce 🐝 Bowen Brand Ambassador @ beBee
7 years ago #28
@Harris Daniel Thank you.
Joyce 🐝 Bowen Brand Ambassador @ beBee
7 years ago #27
Ian Weinberg Yes--I have decided they cannot take my writing from me. I'm slower because my hands are crippled, but I can still think. Best wishes to your cousin.
Ian Weinberg
7 years ago #26
Joyce Bowen Apart from the fact that I deal with this problem in the course of my profession, I also have a cousin who has suffered with MS for over 35 years. In my cousin's situation, she presented with a sudden loss of vision in her early 20's, which recovered after a week. The diagnosis was missed. Fifteen years later she suffered a catastrophic transverse myelitis. Then the diagnosis was made. She recovered enough to get back on to her feet, but the deterioration has been episodically relentless. She was the only woman member of the exco of a large corporate - due to her disability, she was pensioned off. I'm telling you all this because she also went through the negative emotional cycle of 'why me', 'if only' what am I supposed to do for the rest of my life?' And then deep despair ... and then 'Shit I can still type, got a functioning cognitive brain. No one's going to hire a friggin cripple, so I'd better get off my ass and do something!' Which she did ... I think it was the combination of some regular G's&T's (gin and tonics) together with a wicked sense of humor that got her going. She now writes regularly - MS support groups, does corporate communications, writes short stories and has become a rare book collector and trader through her exposure to the literary world. And interestingly, when she's meaningfully busy, her symptoms are more manageable. Maybe sharing this with you will brighten things up a little - you write so well, you have personally experienced stuff from the darker side. I would encourage you to write on. Write stories, write a book or two, share your insights from the dark side for the benefit of others. Hope this contributes something positive to you.
Jan 🐝 Barbosa
7 years ago #25
yes but seen people who suffer from both and it was not a pretty sight...
CityVP Manjit
7 years ago #24
Gert Scholtz
7 years ago #23
Joyce 🐝 Bowen Brand Ambassador @ beBee
7 years ago #22
Funny thing, Jan \ud83d\udc1d Barbosa. I never really was depressed. I was angry. I had all these things going wrong and people kept feeding me bs.
Joyce 🐝 Bowen Brand Ambassador @ beBee
7 years ago #21
Thank you, Robert Cormack. Sorry to hear about your Mom.
Jan 🐝 Barbosa
7 years ago #20
Joyce 🐝 Bowen Brand Ambassador @ beBee
7 years ago #19
Thank you for the share, Savvy Raj.
Joyce 🐝 Bowen Brand Ambassador @ beBee
7 years ago #18
Thank you, Todd Jones.
Joyce 🐝 Bowen Brand Ambassador @ beBee
7 years ago #17
Super, Pascal Derrien. Hope they keep it up. Thank you for your comment.
Joyce 🐝 Bowen Brand Ambassador @ beBee
7 years ago #16
That's something you never sound like, Devesh Bhatt. Thank you for your thoughts.
Joyce 🐝 Bowen Brand Ambassador @ beBee
7 years ago #15
Thanks and I will, Sara Jacobovici
Joyce 🐝 Bowen Brand Ambassador @ beBee
7 years ago #14
Thanks, Ken Boddie. I can hope for some kind of work. I refuse to give up.
Joyce 🐝 Bowen Brand Ambassador @ beBee
7 years ago #13
Thank you Tausif Mundrawala. Please give your friend my best. I will think of her.
Robert Cormack
7 years ago #12
🐝 Fatima G. Williams
7 years ago #11
Very true Todd. I second that.
Joyce 🐝 Bowen Brand Ambassador @ beBee
7 years ago #10
Pascal Derrien
7 years ago #9
Devesh 🐝 Bhatt
7 years ago #8
Sara Jacobovici
7 years ago #7
Ken Boddie
7 years ago #6
Joyce 🐝 Bowen Brand Ambassador @ beBee
7 years ago #5
Joyce 🐝 Bowen Brand Ambassador @ beBee
7 years ago #4
Joyce 🐝 Bowen Brand Ambassador @ beBee
7 years ago #3
Joyce 🐝 Bowen Brand Ambassador @ beBee
7 years ago #2
Joyce 🐝 Bowen Brand Ambassador @ beBee
7 years ago #1