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ms and blindness
Hello, I know that MS can cause blindness and I am wondering why the ms societies do not have blindness related resources to give to their members. Why do they not have braille resources, accessible OCR electronic materials, a listing of adaptive medical devices etc. Why their ms NARCOMS registry is fully inaccessible and they refuse to make it so! My MS did not cause my blindness, I was blind from birth. So it is safe to say that our MS societies do not take in consideration of the various disabling factors that are inherent to having MS.
So they can tell you about treatments to treat the MS but, they do not have the whereall to help someone learn how to cope with the disabilities that come along with MS. If one loses their site, they don't know that they can send them, as a resource, to the National Federation of the blind, www.nfb.org or to www.blindhow.com to find out how to function with their blindness! How they can still have access to printed materials at www.bookshare.org., that nfb news line is free for folks who are losing their site: https://nfb.org/audio-newspaper-service. or That hadley school for the blind has free classes to allow one to learn braille at home and computer courses: www.hadley.edu. The goal of all these places is to allow one to retain the skills to maintain their independentce. I am just dismayed when ever I ask for accessible formats that it seems that the MS societies are in prehistoric mode and do not have a clue how to answer one if one happens to have other disabilities caused by their MS.
I want my MS materials in OCR ready formats, an accessible web site for the MS registry, someone who can speak about blindness with positive outcomes, a ms drug company that has accessible instructions for their medicines. A ms navigator has a clue how to inform members of where one goes to sign up for transit when they cant drive anymore. The MS societies need to help make sure there meetings for members are inside of the city's ada zone for the par transit services. That is the bare basic of services to consider for all people with MS yet, I constantly get calls of people who want to attend meetings that are not in the ADA zones and they do not know how to sign up for para transit services or they can get alternative transportation even for medical trips etc. So why in 2016, we are still reinventing the wheel!
So they can tell you about treatments to treat the MS but, they do not have the whereall to help someone learn how to cope with the disabilities that come along with MS. If one loses their site, they don't know that they can send them, as a resource, to the National Federation of the blind, www.nfb.org or to www.blindhow.com to find out how to function with their blindness! How they can still have access to printed materials at www.bookshare.org., that nfb news line is free for folks who are losing their site: https://nfb.org/audio-newspaper-service. or That hadley school for the blind has free classes to allow one to learn braille at home and computer courses: www.hadley.edu. The goal of all these places is to allow one to retain the skills to maintain their independentce. I am just dismayed when ever I ask for accessible formats that it seems that the MS societies are in prehistoric mode and do not have a clue how to answer one if one happens to have other disabilities caused by their MS.
I want my MS materials in OCR ready formats, an accessible web site for the MS registry, someone who can speak about blindness with positive outcomes, a ms drug company that has accessible instructions for their medicines. A ms navigator has a clue how to inform members of where one goes to sign up for transit when they cant drive anymore. The MS societies need to help make sure there meetings for members are inside of the city's ada zone for the par transit services. That is the bare basic of services to consider for all people with MS yet, I constantly get calls of people who want to attend meetings that are not in the ADA zones and they do not know how to sign up for para transit services or they can get alternative transportation even for medical trips etc. So why in 2016, we are still reinventing the wheel!
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