Joyce 🐝 Bowen Brand Ambassador @ beBee

7 years ago · 2 min. reading time · ~10 ·

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Disability

Disability

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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.

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#Massachusetts Rehabilitation #MS #Disability #Multiple Sclerosis #MRC
Comments

David B. Grinberg

7 years ago #45

All people should be judged by their ability, merits and God given talents, including people with disabilities. Any myths, fears and stereotypes about people with disabilities is reprehensible. This stigma must end, including on issues of mental health. Regardless of whether a person has a physical or mental disability, again, it's their ability that should be the main focus, as well as their character and moral fiber. Anything else is simply superficial and shortsighted thinking.

Lisa Gallagher

7 years ago #44

Joyce Bowen, you are darn right you have worth! I'm sorry it took so long to get a diagnosis and you were mis-diagnosed with depression for so long. Dr's tend to do that to women who present with a subset of symptoms. That is something the Medical Profession really needs to work on and change. As for work, I think you might find with your knowledge and determination you could possibly do online work, become an advocate online, or whatever it is you think you are not only capable of doing but have the desire to do! I admire you.

Joyce 🐝 Bowen Brand Ambassador @ beBee

7 years ago #43

#27
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

#26
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

#40
Deb\ud83d\udc1d Lange Thank you so much

Joyce 🐝 Bowen Brand Ambassador @ beBee

7 years ago #40

#39
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

#38
Dorothy Cooper Here's hoping for the best for you.

Joyce 🐝 Bowen Brand Ambassador @ beBee

7 years ago #38

#37
Thank you very much, Franci\ud83d\udc1dEugenia Hoffman

Joyce 🐝 Bowen Brand Ambassador @ beBee

7 years ago #37

#36
Thank you, debasish majumder. for your kind comment.

Joyce 🐝 Bowen Brand Ambassador @ beBee

7 years ago #36

#35
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

and Harish Daniel. Thank you for the shares

Milos Djukic

7 years ago #34

#42
Cheers Joyce Bowen!

Joyce 🐝 Bowen Brand Ambassador @ beBee

7 years ago #33

and Milos Djukic

Joyce 🐝 Bowen Brand Ambassador @ beBee

7 years ago #32

Thanks to those of you who shared this piece. Robert Bacal to name a few.

Helena Jansen van Vuuren

7 years ago #31

I have not really commented before because someone very very very close to me - my one and only child has problems of some magnitude to him. Fluid filled cavity/cysts on the brain and spinal cord and all its attendant problems. Diagnosed at the age 16 just when he had been made captain of his rugby team. Neurosurgery and then at 18 metal work to support his spine, since then a lot of hospital time. As a mum you want to wrap him up and hit anyone who touches him. He went to uni and worked as barman to pay for that - I know what price he pays for every little achievement and when he is home this is evident from the empty packet after empty packet of pain killers that comes out of his luggage. He then did a Masters and got distinction - apparently this is fairly unusual....he is now writing up his research for his Doctorate. I am constantly astounded at the drive he has to do what he wants and the fight in him humbles me daily. When I read your posts I detect the same spirit in you and find that I want to hug you and make it better/easier for you but I can't - but I can tell you that I am in awe of your strength and the world is a better because of you!

Cyndi wilkins

7 years ago #30

#29
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

Your a strong women Joyce and I salute you for your courage and sharing your story with us. Stay blessed always.

Joyce 🐝 Bowen Brand Ambassador @ beBee

7 years ago #28

#30
@Harris Daniel Thank you.

Joyce 🐝 Bowen Brand Ambassador @ beBee

7 years ago #27

#29
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

#11
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

#25
yes but seen people who suffer from both and it was not a pretty sight...

CityVP Manjit

7 years ago #24

What have we become? That which have not ceased to be. There is little use saying the word "humanity" when disability is viewed as something not to think about or address and in effect to still have people living as an underclass. The prejudice and discriminatory attitudes are rife, the more I dig into the underbelly of disability the more I dig up examples of gross inhumanity. In the battle for attention, we know who gets left behind, this is my principle hang up with this whole personal branding thing, "successful human being" my ass, we are failing people by working on our own brands and branding disability as an inconvenient truth in the process. The more people speak up and spread awareness, the more we can learn about how inhumane our systems, practices and institutions remain - but in the visual age these are the very things that can no longer be tucked away. At a certain point we get exposed to truth and our indifference to truth, because we cannot look away forever. Well written and a necessary statement of life as it really is, even if it upsets those with branded life and branding sensibility.

Gert Scholtz

7 years ago #23

Joyce Bowen "I am part of we—whether you like it or not." I for one, like it. Strong words behind and even stronger spirit. Thank you for posting this piece Joyce.

Joyce 🐝 Bowen Brand Ambassador @ beBee

7 years ago #22

#23
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

#15
Thank you, Robert Cormack. Sorry to hear about your Mom.

Jan 🐝 Barbosa

7 years ago #20

The Crippling effect of depression can be as hard (or harder to beat) than physical disabilities . But when these two combine its hell.. Absolute hell... Indeed.

Joyce 🐝 Bowen Brand Ambassador @ beBee

7 years ago #19

#14
Thank you for the share, Savvy Raj.

Joyce 🐝 Bowen Brand Ambassador @ beBee

7 years ago #18

#12
Thank you, Todd Jones.

Joyce 🐝 Bowen Brand Ambassador @ beBee

7 years ago #17

#10
Super, Pascal Derrien. Hope they keep it up. Thank you for your comment.

Joyce 🐝 Bowen Brand Ambassador @ beBee

7 years ago #16

#9
That's something you never sound like, Devesh Bhatt. Thank you for your thoughts.

Joyce 🐝 Bowen Brand Ambassador @ beBee

7 years ago #15

#8
Thanks and I will, Sara Jacobovici

Joyce 🐝 Bowen Brand Ambassador @ beBee

7 years ago #14

#7
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

#6
Thank you Tausif Mundrawala. Please give your friend my best. I will think of her.

Robert Cormack

7 years ago #12

Hell of a piece, Joyce Bowen, and a hell of a condition. My mother died of ALS. It wasn't diagnosed until she only had six months to live. Tragic scenarios. Thanks for the post.

🐝 Fatima G. Williams

7 years ago #11

#12
Very true Todd. I second that.

Joyce 🐝 Bowen Brand Ambassador @ beBee

7 years ago #10

Ian Weinberg

Pascal Derrien

7 years ago #9

Yesterday my son was watching a program on BBC about a teenage wheelchair competition not sure how it is called but see it as the equivalent of skateboard, he told me they are pretty good arent' they !!! I have a blind friend who is a runner and has recently completed 7 marathons on 7 continents in 7 days she wants to show that disability is just a label , the two of us are actually going to the Irish parliament in couple of weeks to advocate and lobby on behalf of disaaility groups main message being stop defining individuals by their handicaps whatever the handicap is.... important topic keep stirring and keep steering :-) Joyce Bowen

Devesh 🐝 Bhatt

7 years ago #8

Let it all be known through the writing as you do now. Make it unforgetable as you do now. I like the fact that you are part of the "we" , let the writing allow your condition to like it I sound like a preachy a-hole, pardon me.

Sara Jacobovici

7 years ago #7

You have worth Joyce Bowen. Shame not everyone can appreciate that. Stay strong and continue looking for that place for yourself...if you haven't already found it.

Ken Boddie

7 years ago #6

Thanks, Joyce, for speaking-up on subjects which, I suspect, few of us know much, if anything, namely MS and the attitude that the disabled should be swept under the carpet, as though the world only comprises able bodied men and women. I wish you a long and sustained writing capability and the hope that someone will see you for your true worth and ask for your advice and contribution to the working environment.

Joyce 🐝 Bowen Brand Ambassador @ beBee

7 years ago #5

Dean Owen

Joyce 🐝 Bowen Brand Ambassador @ beBee

7 years ago #4

Milos Djukic

Joyce 🐝 Bowen Brand Ambassador @ beBee

7 years ago #3

Deb \ud83d\udc1d Helfrich

Joyce 🐝 Bowen Brand Ambassador @ beBee

7 years ago #2

Cyndi wilkins

Joyce 🐝 Bowen Brand Ambassador @ beBee

7 years ago #1

Deb\ud83d\udc1d Lange,

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