PLEASE HELP!!!!!!!Massive Accommodation Problems, Academia


Posted by Dave from Michigan , Mar 03,2001,15:31   Archive
Greetings All:

I'm back! (...and if i can help you the way folks on the list have helped me in the past, I certainly will do my best!)

My question: What in the world do I tell accommodation specialists who have never herad of Bleph and similar disorders besides explain to them my predicament and refer them to the terrific pages about bleph and distonia? Have any of you any friendly tips for explaining your unique needs to well meaning and friendly accommodation specialists whom are informed about how to help folks who are totally blind? (and recommend things for you or others, things which are probably suitable for totally blind folks, God bless 'em, but are not only useless for folks with bleph and similar conditions, but extremely inappropriate as to get in the way of (and prevent) serious work?)


Please help! ( Don't want to give up a hard won ten year career over a (insert favorite perjorative term) disability which accommodation specialists don't recognise )

Dave




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Re: PLEASE HELP!!!

Re : PLEASE HELP!!!!!!!Massive Accommodation Problems, Academia --- Dave from Michigan
Posted by June in Toronto (June Floyd,June in Toronto), Mar 03,2001,17:23 Top of Thread Archive
Dave, I'd like to help BUT what is an accommodation specialist first? It must be a U.S. term that I'm not aware of.
Our Institute for the Blind (CNIB) in Toronto is aware of beb and could/should be able to help a person explain it to another. A good doctor (neurologist) should also be able to explain it as well (mine did to a disability insurance company doctor who know nothing about it. Let me know more about this acc. spec. and we'll see what we/others can come up with.

June in Toronto




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Re: PLEASE HELP!!!

Re : Re: PLEASE HELP!!! --- June in Toronto
Posted by JD Sours (Dave from Michigan,JD Sours), Mar 03,2001,22:27 Top of Thread Archive
Dear June in Toronto:

My apologies to all for multiple postings - it's been a while and I am getting used to the new site.

Thanks for the encouraging message. Accommodation specialists are basically social workers who are either the go-betweens between docotrs and those who provide accommodation or actually provide accommodation. They exercise complete control over who gets what accommodative measure. I mean no disrespect toward them, but it appears that the position does not require them to keep up with (what to them might seem arcane) developments in the field. What the position seems to demand (judging by my biased observations of people's performance of the postion) is that the accommodation specialist interprets a physician's diagnosis into a general category (such as "low vision" (with specific visual acuity)) and provides accommodation based on a set of criteria which so often recommends accommodations such as "provide books on tape" (which makes impossible, for most of us, work with conceptually dense material) or "add light" ... and lots of it! ... (self explanatory) I want to assume this protocol works well for many people who are legally, but not functionally blind.

It appears that individuals with bleph or similar conditions, as well as their suggestions,* are then excluded from the accommodation process by individuals without medical training. What this amounts to is that the accommodation specialists then make profound, well-intentioned, "cookie cutter," and disasterous career decisions for the individual with bleph - a situation which leaves me out in the cold.

I would appreciate it if you or anyone else would chime in here with suggestions as to how I or someone else might better inform the decision makers in this process.

Kindest Regards to All on the List (...and thanks for reading),

Dave

* I bet you folks have found some things which work for you. Imagine you were not permitted to use such things.




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Re: PLEASE HELP!!!

Re : Re: PLEASE HELP!!! --- JD Sours
Posted by June in Toronto (June Floyd,June in Toronto), Mar 04,2001,02:45 Top of Thread Archive
Dave, So these `accommodation specialists', have nothing to do with getting you accommodation but providing you with aids, like talking books. I think Dee explained it well. Just get everything you can that is written about beb to give these specialists in order to explain the condition to them. Then be perfectly honest and explain what is happening to you.
In my case I'd say that I `normally' (before beb) had good vision, except that the botox injections I require now TO KEEP MY EYELIDS OPEN cause me to have blurred vision, extremely light sensitive so, therefore, have to wear dark glasses a lot indoors and out. I'm unable to read very much as it causes pain and burning even with reading glasses and a magnifying glass. Squeezing of the muscles around the eyes causes me to be functionally blind at times (varying from a few times a day when the botox is working, to many times a day when it is not). It limits ALL my activities.
Its very hard for these specialists `to walk in another's shoes', but we have to do our best to educate them, as Dee said. Its a great opportunity for us to do that - you can as well.
Good luck

June in Toronto

--modified by June in Toronto at Sun, Mar 04, 2001, 02:47:54




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Re: PLEASE HELP!!Massive Accommodation Problems, Academia

Re : PLEASE HELP!!!!!!!Massive Accommodation Problems, Academia --- Dave from Michigan
Posted by Dee in OR (Dee L.,Dee in OR), Mar 04,2001,01:43 Top of Thread Archive
Ask these Acc. Specs to take a minute and squeeze their eyes shut and try to type, or read something. Then tell them that is what we who have blephs experience all the time. I was trying to get help from State Rehab and they had never heard of Blepharospasm and told me I was not vision impaired. I said you are right, there is nothing wrong with my VISION, I just can't see through my eye lids. I also printed out the definition of Blepharospasm and gave it to all the Rehab counselors. I used the opportunity to educate the ignorant and it worked. And another thing I did was to get a letter from my Opthalmologist explaining blephs and that at times I am functionally blind. I hope you can use some of these ideas Dave. Our only solution is to educate people about these things and hopefully someone will hear what you are saying. Have the BEB Foundation send you an information packet - there is all kinds of good stuff in it that explains our disorder. Good luck.

Dee in OR




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Re: PLEASE HELP!

Re : PLEASE HELP!!!!!!!Massive Accommodation Problems, Academia --- Dave from Michigan
Posted by Lynn Yarbrough , Mar 04,2001,15:00 Top of Thread Archive
When I need to explain my siuation, I say something like,

"I have a rare neurological condition called Benign Essential Blepharospasm. In lay terms, I have a spastic blink reflex. My optics are fine, I just can't keep my eyes from blinking very frequently and for long periods of time. It makes driving a car quite an adventure. I am getting treatment every few months. What is the treatment? You don't really want to know." [People get really grossed out when I mention the 10 injections arond the eyelids.] Then go on with more details about your particular symptoms (I don't have the glare problems or headaches etc.] and restrictions.

It's really a good idea to go to the BEBRF web site (see the home page here) and ask for brochures etc., that you can give to lay people or even to medical professionals, who likely never have seen one like you before.

I hope you find the treatment you need soon, and have good success with it. In the meantime, keep a sense of humor about it. Might as well!

--- Lynn




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Re: PLEASE HELP!

Re : Re: PLEASE HELP! --- Lynn Yarbrough
Posted by Dave from Michigan , Mar 23,2001,22:58 Top of Thread Archive
Dear Lynn & Dee:

thank you for the advice. However, I have followed your advice the best i am able, with negative results. The accommodation people here have an excuse for each of the 40 months they and I have been at this. It must be more fun for then to get out of helping doctoral students then it is for them to actually perform the tasks for which they were hired. They still recommend and offer to provide things suitable only for folks with seeing eye dogs, (God bless 'em) except, of course, large print, which they consider to be a privilege. I will continued to welcome any more advice from you two and anyone else who wishes to chime in.

Continued Regards to the Entire List,

Dave




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Re: PLEASE HELP!

Re : Re: PLEASE HELP! --- Dave from Michigan
Posted by Joanne Johnson (joanne johnson,Joanne Johnson), Mar 24,2001,10:38 Top of Thread Archive
Hello Dave. I worked for the State of Wisconsin prior to my medical leave and disability retirement. Government agencies have very strict ADA guidelines regulated by the federal government. If you are attending a state funded university, you would probably have similar rights. My employer was willing to address the need for different lighting, a modified computer, etc. However, I could no longer drive and this was the rub. There is a clause in the ADA standards that if a modification causes dissention in the workforce, they don't have to do it. In other words, if a coworker was asked to drive me to the courthouse and it interferred in their ability to do their own work, or if they expressed any anger or resentment over having to do this, ADA standards would not apply.They should have a manuel or written policies. Do you have a copy? I suggest that you start a binder and keep everything related to this fight in an organized matter. At some point you may want to consult an attorney. I wish you success.



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Re: PLEASE HELP!

Re : Re: PLEASE HELP! --- Joanne Johnson
Posted by Dave from Michigan , Mar 27,2001,18:52 Top of Thread Archive
Dear Joanne:

Thank you for the information and advice.

As for an attorney, don't those who pave the way for others in such matters make their point, and make it loud and clear, but are not they themselves nailed to the barn door for their efforts? That seems to be what is happening here. (without the paving-the-way part) It's odd. I'm not a rabble rouser, I only want to read what is put in front of me.

Dave





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Re: PLEASE HELP!

Re : Re: PLEASE HELP! --- Dave from Michigan
Posted by Shirley-Arkansas-USA , Mar 27,2001,21:31 Top of Thread Archive
Hi Dave,
Seems like you've got a mess of a problem. I hate getting attorneys messed up in these things.
If you have already done what I suggest just say been there, done that.
Sit yourself down and make a list of everything that you have a problem with at work due to your disability. I couldn't perform my job duties even if I had had accommodations but if you are in a position or field of work that you can do this, go for it.
Make your list, even including time to rest your eyes at intervals through the day, which most of us have to do. You may need lighting from behind you. You may need an antiglare computer screen. They make large lighted magnifying glass that can be attached to a counter or table. This can be useful for reading small print that is not on your computer. Need a phone with big numbers? Is your office compatible with your disability? Is your monitor large enough? Just make a very complete list and then research as much as you can on functional blindness and BEB. Using the newsletter, written articles, posts from this bulletin board, anything to back you up. Go see your friendliest and most helpful physician and ask him or her which of the things he or she feels are reasonable accommodations for someone with your degree of handicap. You may have to tell or explain to him or her why certain things are a problem. Give them the list and ask the doctor to write a letter on your behalf. Supply the doctor with back up information and how certain things would help you. Once a week call the doctors office and very nicely ask to talk to the doctor's nurse and suck up to her, telling her you hate to be a bother, but--you were just wondering if the doctor had had a chance to write you a letter yet. You know how busy he or she is and how time consuming this is for them. (I used to work in a doctor's office)
When you get your letter, ask to meet once again with the accommodation specialists as you need their help with this difficult matter. Sit down with them and tell them how much you love your job and just want to be able to keep it and do the best job possible and with their help you will be able to do so. They get a letter from your doctor supporting and making suggestions and any backup documentation that you can find.
That's the best that I can come up with this evening. Good luck to you.

Shirley in AR.




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