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.