A Ragged Edge Online

Many thanks for these pieces on 'invisible disabilities.' I have been struggling along in the neighborhood in which I have lived since 1966, where people remember me as a rather dynamic young person who worked in both city & state government & was always active in political affairs.

Now that I suffer from 'chronic pain' with ten herniated spinal disks, severe osteoarthritis and fibromyalgia and am no longer employed full time, they don't know who I am. Our chosen vocations say so much about our dreams & aspirations: if an individual's 'progress' in the workplace is halted, that person is suspect & certainly no longer worthy of respect and, sometimes, common courtesy. One can do only so much consciousness raising.

Now that I am attempting to manage diagnoses of dissociative disorder & bipolar type 2, (no lithium, I guess,)fahgeddaboutit.

It is good to know that I am not alone, in fact, in trying to cope with misinformation, disinformation and jury still out.

Thanks, again,
Carol

It is bad enough to have an invisible disabiltiy, and to have John Q. Public look at you cockeyed because you use a service dog."You aren't blind, why are you using a guide dog?" is something that we all hear every day,but that is from people who have never really thought about this question, so their ignorance is understandable and cureable.

What is inexcuseable is when the disabled community attacks other members because some do not feel that those with hearing,balance,mental or other invisible disabilties are "disabled enough" to warrent using a service dog. There is a gentleman who intreptes the ADA according to his lights, and teaches others this same skewed definition of disabiltiy, and this has caused a great deal of difficulty across the country for countless disabled. almost daily I hear of still more who have been told by their doctors that they are disabled, are on SSI or other disabiltiy assistance, but when they meet online or off someone who has been taught that flawed version of the ADA they are verbally attacked in a vicious manner,harassed and threatened with legal action for fraud.

We who are disabled should be helping each other to better our lives, rather than joining the ranks of those who believe that the only good crip is a dead one.

Its funny how I relate to this article. Over the past three years I've had bouts of anxiety. It has been disabling at times, but because I can hide it, I feel like I have to justify to certain people why I can't do something or why I'm acting differently. I feel guilty almost. I ask myself why can't the words, "I can't or I'm not able to." be enough. If I wanted to explain I would have. I am also starting to understand my husband a bit more. He has a type of social anxiety, but really he is just shy. It's not really a disability, but because our society values extroverts, he is often misunderstood. He has found himself making excuses and making it obvious just to keep the questions away. I wanted to make my anxiety obvious by checking into a hospital or taking medicine because I thought it would make my issue "real" to everyone else, but it's real to me and that should be enough.

Yikes! A well intentioned article, but....

Hi Folks, I do not have an invisable disability, nor can most folks "see" my disability, my disability is hidden. I had hidden disabilities!

Hidden Disabilities

Folks like myself, whos disibilities need "expensive" tests, like dna tests, and MRI's, are often mis dxed with "psychological" labels. I am not bi-polar, depressed, suisidal, paranoid, autistic, nor is my chronic pain fibromyalgia. Now, when I state that a whole bunch of folks in the so called "desability community" stares yelling at me that mental illness is nothing to be ashamed of, and I am in denial!

I am not the one who is in denial. And through all 19 years of believing in myself, the correct tests were ordered. and my disabilities cam be seem, clearly, definately, as plain as the nose on your face.

So, many folks with hidden disabilities "get it" from both camps, those with obvious disabilities and those with invisable disabilities.

It is too bad that the definition provided by public law cannot be understood by so many folks. I believe there is an unfortunate struggle between two groups that contribute to this, one group is into victimization, ie, I need to be cared for, and need special accomodations, and the other group also into victimization, it will cost me too much to care yor you, and why should I give you get special treatment?

In my town, Cambridge MA, the most recent winner of most accessible city award from NOD, I was arrested by the police, whom I called to assist me in entering CVS. When I confronted the Police Commissioner about this he informed me the police had consulted the ADA coordinator, (who uses a wheel chair) in my arrest. When I confronted the ADA coordinator he asked me "why did you go into CVA when the police told you not to go in, because your dog looks like a wolf and might bite someone, the way we do it here, you leave and call us, and we send information to the CVS about service animal laws." my response..."Gee, what country do you live in?"

The disability community is like any other, with many points of view. I am unable to work as a result of my multiple disabilities. I have been able to get jobs, as "they" can't see my disability, but even with my service dog at work, and flex hours, etc, I am not able to perform the work. I have tried over and over again, at mant different kinds of work. I am motivated to work, but my disabilities prevent me from doing so. The ADA coordinator, however, who is partially paralized, and useds a manual wheel chair, is able to work. But his attitude toward me can only be described as hostile abd his behavior to me as abusive. Why is this, can it be he is jealous? Would he exchange his paralis for my disabilities? Does he really believe that I am faking it, and since I can walk I am not as bad off as he is?

Or is it my attitude? I am not looking for sympathy, nor do I want someone to take care of me, nor provide special accomodations. I just want the barriers to be identified and removed. He sees barriers the same way some see his disability, as painfully concrete, obvious, a flight of stairs or a narrow door.

I, however, see the NO DOGS sign, and the police running at me with their guns, and the smarmy attitude of Doctors in a health care system that refuses to order blood tests or MRI's for 19 years.

My strength in all of this is my belief in myself, which I learned to lean on as some lean on a cane.

The police were called on me most recently a few months ago, when I attempted to ride on the MBTA with my service dog.

This is a great topic, and I hope it results in a great discussion.

Thank you so much for putting the spotlight on some of the issues face by those members of the disabled community with nonapparent disabilities. I would like to add another resource about the experences of people with nonapparent disabilities A World Awaits You (AWAY) Magazine.
Thank you,
Melissa Mitchell
Outreach & Training Coordinator
National Clearinghouse on Disability & Exchange
Mobility International USA
[url=www.miusa.org/]Mobility International USA Celebrating 25 years of Empowering people with disabilities around the world to achieve their human rights through international exchange and international development.

Brilliant articles guys. I can't tell you how many dreadful looks I have gotten over the years for using a disabled parking spot. Never mind that I have the correct permit or that I'm the passenger, or that i'm dottery and clinging to someone for support. I have 2 arms and 2 legs and can't possibly be as sick as (insert name here). The fact that he goes golfing twice a week is irrelevant, he *deserves* that parking spot.

Invisible illness brings out the best and the worst in people. Thankfully its the best that I choose to remember most vividly.

Once again, great articles.

Abbey
Vice President NSW ME/CFS Society of NSW Inc.