Re: CMT Work Disaster

[Guest guest]

Hi Andy,

You are experiencing illegal discrimination & you need an advocate.  In my

experience you will not find an advocate in the work place.  You need to

document what is happening, you need to find out what your rights are and you

need an advocate.

I went to the EEOC in my state when I was discriminated against.  They explained

my rights, investigated allegations etc.

Be careful not to explain too much at work (personal info) or to be sucked into

conversations about who is discriminated against more (disabled, black, aged,

female).  You will never regret taking the high road.  This is about your right

to earn a living and ultimately survive.  This is about employment law & the ADA

nothing else. 

Chris

[Guest guest]

Hi Andy,

I haven't been in your exact situation, but I can feel your frustration!

I have worked as a health club instructor, worked at a court house, owned a

small grocery store, tanning shop, to now, a real estate office. I'm 57, and as

I look back, I adjusted as my health declined. I was lucky as no one treated me

as a disabled person even when I fell a lot around the office and out on

property tour.

The worst thing for me, as I look back, was as you talk about...doctor's sending

me in circles, and people who didn't know me,

feeling sorry for me. As far as accommodations...I realized they were just

trying to be helpful... but in most cases people treated me like I didn't have a

disability. I think it was because in my eyes...I didn't think about my

physical challenge... I was focused on the work I loved...selling real estate!

My son is 29 and thinking about leaving his city job. He hates to but feels he

can no longer climb ladders, or use their heavy equipment. I thought maybe he

should tell his boss and see if they could put him in another position. He

feels he doesn't want anyone to know about his CMT and also doesn't want to put

anyone out. My son is so well liked and is a very hard worker...I feel they

would help him, but it's his life, and I trust him, and respect his choices. It

does break my heart to watch the CMT slowly deteriorate his body. All I know

is...It is, what it is...and the love of his family, friends, and God will help

him through his life.

Andy you wrote, " I hate the fact that I had to take all this time away from work

to get no where " Trust me Andy...this is all for a reason and you are going

somewhere! ;-) Many years ago a friend of my parents told me... " Kay you

have the world by the the tail " It's funny because every time I felt like

giving up I remembered that, and believed it too!

Your boss sounds like he may be playing he victim role...maybe it's hard for

him to see that you aren't playing the victim. Just a thought...

Anyway Andy, thank you for sharing. You will be in my thoughts and prayers. I

know a book that has helped me is, " A New Earth " by Eckhart Tolle

Have a great day!

Kay~On The Beautiful Oregon Coast

[Guest guest]

Hi Andy,

Have you ever tried AFOs?

[Guest guest]

Andy,

I think this guy totally got off on the wrong foot with you and things

went from bad to worse when he tried to make a joke to lighten things

that was very hurtful to you. And that thing about sending out your

medical information to people! If you did not give him permission to

do that with a signed form, you may have had some very serious rights

violated. There are various non-profit organizations that advocate for

people with disabilities. Perhaps you can find one in your area for

advice.

[Guest guest]

Hi Andy,

I have been thinking about your situation all day. As for the

confidence not being kept, my experience with work over the years is

that when one person knows,everyone knows. In other words, nothing

is ever 'confidential'. Sorry to say, and legally it may be worth a fight if you

are up to it.

As for your falling alot at work, on one hand, from the employer's

point of view, if you fell and seriously hurt yourself, the employer would be

liable for injuries, etc. and or potential lawsuit. On the other hand, falling

with CMT is what happens sometimes, but do you have orthotics or AFOs to help

with this? I don't understand why the

medical professionals, PTs, OTs, etc., didn't want to help, or

couldn't help. It makes no sense.

If you can do your job and don't want/need accommodation, your job is

not at risk, you're the best employee, you shouldn't have been sent to a doctor.

I think possibly this is more of an employer liability issue. This is nuts - to

try to force accommodation onto an employee who doesn't need it!

As for his comments, sounds like the boss has some anger

and 'entitlement' issues about himself that he is projecting onto

you - maybe because you ARE so good at what you do, and therefore

that pisses him off. You have risen WAY above the line by being the

best employee, despite the effects of CMT. By just doing my job, and

being good at it, I have been fired twice in my career with the

reason being " you make the other employees look bad " !

I sure can relate to sharing about CMT at work. You have a right to

your privacy which was stripped from you when that letter went to

everyone.

Taking some time off will give you some perspective and who knows,

maybe you'll decide to find a better job. I did exactly that at one

point. Perhaps you might want to talk with an attorney about the

situation. I did that too.

You might want to check into the ADA on this, and the Department of

Labor for your state. http://www.ada.gov/ You might want to file a

Title III complaint, which prohibits discrimination based on

disability by businesses and non-profit agencies.

Another possible resource http://www.dol.gov/odep/index.htm

Gretchen

[Guest guest]

Thank you all for you input it's nice to know that other people who are living

with an illness feel as I do.

The advocate for minorities including disabilities is the guy who broke

confidentialty and said off jokes.  The reason he got involved was another

supervisor saw me fall and thought something needed to be done so she called the

EEO/AA person who met with me and I understand why because that is his job.  The

issue I had was the way it was done. 

I was told right away that what I say there was confidential so I did disclose

the CMT.  He said I was a direct threat to myself and others so I looked it up

and legally it has to be a serious threat such as a pilot who if unable to do

his job because of an illness that is not stable could put other people at

serious rish and of course him/herself. 

I have an office job and anything I would need would be that of a public

accomodation to make sure safety and OSHA requirements are adhered too.  It

should have ended when I told him I don't want or need an accomodation and at

that point legally he is protected

because he met with me and offered services and I declined. 

Instead he wrote a memo indicating I will need my doctor to write a letter about

the CMT and recommendations in order for an accomodation to take place.  The

letter made it seemed as though I was asking for one and that gives a negative

stigma and people who read it may believe I am not able to fulfil my job

duties. 

It also should not have specifically put my diagnosis down he could have made a

general statement that I may have a condition that meets requirements for an

accomdation.  I also found in the policy that the " Interactive Stage " is just to

asses and should not have gone to level 2. 

The joking around was more then just being sensitive.  He was telling me about

specific people who are working there who got accomadations and that proved to

me he does not take confidentiality serious.  He said her did research and

thinks I need a walker and who cares if I looked like an old man, but it had

cool breaks and he laughed.  I just thought he was unprofessional not exactly

unlawful with the joking around part.

I do wear AFOs and started using a cane on my own accord cause I can not find a

doctor who will work with me on what type of cane is appropriate and how to best

use it.  My doctor said an OPT they say no its PT and PT says it's OPT so I just

keep getting the run around. 

I did follow the CMTA recommending doctors and went to UMDNJ in NJ who are a

well known reputable hospital so I did have some expectations.

The funny (or sad) part of this whole thing is I work in the courts where we

carry out the law yet they are being unlawful themselves and the fact that the

advocate person who has no other job but to deal with discrimination seems to be

not doing a great job.

I called and spoke to some advocate groups who said they honestly don't deal

with forced accomodations usually they deal with people who are refused an

accomadation.  They did say my right to privacy was violated and they will

notify me in writing if they will take my case. 

The problem I have is more of a political one since I do work in the court

systems as an administrator myself so hiring an attorney to sue my own job seems

a conflict of interest and I fear retaliation. 

Thanks again for everyone's input

Andy

[Guest guest]

Andy,

Do you think your AFO's are worn out? My son gained 10 pounds and his AFOs

became next to worthless. We had to get him a new pair.

[Guest guest]

Hi Andy!

I do agree with Gretchen wholeheartedly. I really believe that your

employers concern was for his own liability not for your health and

welfare. Worker's compensation - heaven forbid you should get hurt

in a fall - is part of an employers risk of doing business and he

needs to get over himself.

I also agree that you should take some time and re-visit your

position while doing some extensive research with an advocate

regarding discriminatory practices. If you aren't worried about

going public (since it was already done for you against your wishes)

go to a local TV station investigative team and let them do the

research for you.

Personally, I would ignore the huge chip on your bosses

shoulder...that's his problem and shame on him for trying to make

that comparison. Focus on your issue and let someone else find out

what a jerk he really is during the investigation.

Please keep us posted.

[Guest guest]

,

Actually I have had the same set of AFOs for like 15 years now and I went

through a battle getting new ones.  The first ones were made so poorly I couldnt

even fit into them. The made another pair that was so wide I was swimming in

them.  The modified them by melting them in and then one foot was pointed down

and the other up to the right.  I had to go there 3 more times and I never was

able to use them, they let me walk out with them and they did want me to wear

the new ones because they felt I needed gait training.  When I followed up with

the same hospital I was told gait training would do nothing for me since I

already know how to walk and learned to compensate well.

The place I had my original AFOs made from Jack Surgical's were great but JFK

Hospital who made the new ones said Jack Golds burnt down.  I later found that

the facility was burnt down however they opended up a new office.  When I went

to Jack Golds they said the new ones were poorly done and were junk and

unmfortuantely my insurance wouldn't cover them because the new place billed my

insurance company.  I will have to wait a few years before I can have Jack Golds

make them.

The last doctor I was referred too said my health is being poorly managed and I

need someone that is going to case manage everything yet he was unable to find

someone who would.  I agree I need a person to do that.  Maybe I should call my

insurance company to see if they can help but in my experience CMT is a hot

potato.  I work 10-12 hour days and when I am home and the weekends I am taking

care of my daughter I can't keep missing work to go to all these appointments

just for them to say they can't help. 

The Neurologist is good at assesing but I see why he sent me to PT,OPT, and a

physiatrist but then they don't know how to treat me so they feel a Neurologist

should treat me.  It is very very frustrating!!!!!

Andy