Explaining Disability – Part of What Makes Us Disabled
Author: Jonathan Rodis
President-Massachusetts Chapter of the National Marfan Foundation
Head-EDS Massachusetts and New England Support Group
“I wanted to share with you something I wrote to help everyone understand what it is like to be disabled, what it is like to have an invisible disability, what to do if you find yourself trying to explain your quality of life to the world around you.
One thing that helps me awaken family, friends, colleagues, etc to what it is like to live day to day in this body is something I came up with back in 2001 when I was filing for disability.
Deciding to file for disability was one of the most difficult decisions I have ever had to make. It was hard enough to have to give up my career but I knew that my health was getting much worse the longer I continued to work. Once I decided it was time, I began the process. One of the first steps was to fill out the social security forms/application. (to apply) I could have applied over the phone but I chose to go in to the office and sit down with one of the SSA representatives. Here is what happened..
As I walked towards the representative’s desk, he looked at me and said, “You’re disabled?”. WOW….I couldn’t believe what he just said. My first reaction than my jaw hitting the floor was to hit the guy as hard as I could and knock him over his desk. I knew that wouldn’t help my approval chances so I took a deep breath and my mind/mouth said the following to him…”Let me tell you just part of what makes me disabled.” “Think about the last time you had a bad cold…your whole body hurt…you were pretty weak…you probably had some dizzyness and you felt like crap.” I gave the guy a few seconds to think about it and then I went on to say..”That is how I feel 2-3 days a week.” I gave him a few more seconds and I then went on to say..”Now think about the last time you had a bad flu”. I gave a few more seconds and added..”You not only hurt from head to toe, you probably were extremely weak and had bouts of dizzyness,,,getting out of bed was nearly impossible,, and you definitely were not able to do the smallest chores..never mind go to work.” I gave a few seconds more…and said..”That is how I feel 4-5 days a week!” At this, his face was completely red and asked me in a very solemn tone to please sit down. He didn’t understand what an invisible disability was and I gave him a crash course. The meeting went very well from then on and I gave him more reasons I could no longer work. –
I hope my story can help you and everyone with helping people relate to what we go through by experiences they themselves can relate to. Everyone has had a cold and flu.
Another thing, next time one of your relatives or friends or whoever doesn’t get it, call them when they are sick with a cold or flu and ask them why they are not at work or school or whatever. In a nice way, tell them this is how you feel most days.
Also, for those of you who have disability placards for your cars and someone comes up to you and tells you that the space is only for the disabled…tell them you are disabled..and why you have the card. Their face will probably drop. People need to realize that disability is NOT necessarily a wheelchair or crutches.
I hope what I wrote above helps with trying to get people to wake up. I have to say, that it has helped me with not only dealing with my friends, family, etc but also in educating medical professionals on what it is like to have an invisible disability as well as a connective tissue disorder.”
Jon is also very active as:
Chair-Physician Awareness Committee(s) for Marfan and Ehlers-Danlos Syndrome(s)
National Disability Advocate for Rare Disorders
Member: Winthrop Disability Commission
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