To be or not to be….disabled.

I am active in the patient community so I know a lot of people who are on disability due to chronic illness. Their age, gender and race all vary, but the one thing they have in common? The majority of them wish they could still work. The majority of them are dirt poor, especially if they are single. Most importantly, the majority of them never wanted to file for disability but saw no choice and/or had doctors that recommended that path.

As a patient advocate, a lot of people in my social circle reach out to me before or after they approach their human resources department to ask for accommodations. All still WANT to work, and are asking for minor accommodations like being able to sit instead of standing for long hours or ask for reserved parking spot closer to entrances than the handicapped spots (seriously, some of them are sooooooo far from convenient). I knew one teacher with scleroderma who struggled with walking, so she was always given a student teacher who did all the escorting to and from the cafeteria, specials, and recess.

Personally, I’ve worked at places where HR was super accommodating because they appreciated their employees. I’ve also worked at places that make employees cry during the meetings and then immediately refuse the request. My one friend with MS has been “forced” into temporary disability because his place of employment can’t accommodate his needs right now. I, personally, have been turned down for a temporary accommodation due to an injury and was completely shocked. I had asked for help with getting a mobility device out of my vehicle until I healed, and was told if I couldn’t do it myself I shouldn’t be working. That caused me to go an extra month in a cast because I had to put weight on my broken bone (according to my doctor). I didn’t complain because I needed to work to support mine and Georgia’s medical needs.

All of these examples are of people who WANT TO WORK. They just need a little help doing it. From what I hear from HR people they have to be consistent and not do anything case by case because it wouldn’t be perceived as being “fair”. So if they give a supermarket cashier with ankylosing spondylitis a stool to sit on during their shift, they would have to give one to everyone, I guess. Horrible, right?? I can’t tell you how many people I know who have been forced into disability or lost their jobs because their employer couldn’t or wouldn’t accommodate their needs. There are amazing employers who go above and beyond. For those of you who have that, appreciate it and know you are lucky!

I grew up around people who always questioned other people’s claims of disability. There was always a perception that if someone was able to do stuff around their house, or not in a wheelchair, then they were “faking” it. Now I don’t doubt that some people fake disability claims. But I have to wonder how many people are now on disability because simple accommodations couldn’t be met. Disability is often the only way those people can get their medications covered. It’s honestly a nasty circle.

I have no solutions , but in a time of elections when #cripthevote is spreading throughout social media, maybe it’s time that people with disabilities raise their voices a little louder. Until then, I am a person with a disability who is not disabled but will keep speaking out until someone smarter than I am can figure it out how to solve it.

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Kelly holds masters degrees in both Special Education and Speech-Language Pathology. She works full-time as a speech-language pathologist in both a public school setting and as an adjunct faculty member at a university, in Philadelphia, PA. She specializes in both autism and augmentative/alternative communication and took her skills to Uganda, Africa to start a special needs program for disabled children living in an orphanage in 2011. Kelly began experiencing symptoms of autoimmune arthritis in 1984 (while in her teens) but wasn’t officially diagnosed with autoimmune arthritis until 2001. Her first diagnosis was Sjogren’s syndrome. Eventually her diagnosis was changed to sero-negative RA and now Polyarticular Spondlyoarthropathy. She also manages thyroid disease (resulting from Graves Disease), fibromyalgia, renin-deficient hypertension, and disseminated superficial actinic porokeratosis (DSAP) on a daily basis. Kelly connected with other autoimmune arthritis patients via social media in 2008. She began volunteering with the “Buckle Me UP! Movement”, which evolved into the International Autoimmune Arthritis Movement (IAAM) beginning in 2009. Then became a cofounder of IFAA in 2013. She has represented the ACR on Capitol Hill as an Advocate for Arthritis, was a finalist in Wego Health’s Health Activist Hero awards in 2014, and speaks at various healthcare conferences as a patient advocate in the Philadelphia area.

3 thoughts on “To be or not to be….disabled.

  1. Kelly, for me giving up work was not something I wanted to do, rather my employer insisted on it. In honesty I was not performing at my usual level and things were going down hill fast. I had to give it up it is likely good I did. It was close. Today I am better and worse. More issues, less answers, but I am not working. I loved working and still wished I did.

    Is there an answer? I doubt it. I hate not working, I want to work, I would work if I could. At nearly 63 I am too old these days to have a job even if I could. Perhaps someday again.

    Liked by 1 person

    1. I’m trying to plan for retirement. My goal is 6 more years, then moving out of my current setting and possibly doing tele-practice. Reducing exposure to germs and still being able to do what I love. I’m also trying to start a side business in sales. Time will tell. Honestly, Georgia just needs to get a job! LOL

      Liked by 1 person

  2. Of course she has a job. She is beautiful. That is job enough. Or so said my 14th Girl Friend of my freshman year in High School. I mean she said that when she broke up with me. Think of all the things she missed out on. I mean those wonderful times I and my 15th girl friend had.

    Speaking of number 14, I think she was not all that beautiful. After all she was the witch in the high school play and she did not need makeup or a broom. Of course number 15 did play the chicken in the spring play.

    Come to think of it, it must have been me. After all I played the cow in the chicken play.



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