Observations From Below: Could You Just

People with disabilities are often seen as being lazy and dependent on the government. Like most stereotypes, this is an inaccurate belief and takes the pressure off society to deal with people’s issues with employment, fair wages and abilities.

I graduated from college with high honors and earned many scholarships and awards. I have been able to create some opportunities for myself. What I can’t create for myself is a steady paycheck. I spent a better part of a year profiling non-profit organizations for a local online startup newspaper. I found the work very rewarding and I enjoyed shining a light on important social issues and the groups trying to address them.

Without exception, all of these organizations were impressed with my work ethic and the product I produced. Because of this, they each approached me to do other things for them. I heard a lot of “Could you just…” Sometimes, I was asked to speak, other times I was asked to cover additional events or to train groups of people. One organization asked me to come address twelve different classes. Just recently, I was invited to give one of my presentations to a group of 100+ staff members who ironically, specialize in disability employment. One catch is there are rarely offers to compensate me in any way or to hire me. I feel like a professional volunteer.

There is a book called, “Fifty Jobs in Fifty States,” by Daniel Seddiqui. It is about a recent college graduate who tries for a long time and is unable to get a job in his field. He eventually decides to do an experiment in which he travels to fifty states and gets fifty jobs in fifty-two weeks. I read the book during my volunteer blitz, but I know there is one glaring difference, even though Mr. Seddiqui was only working most jobs for a week, most of the organizations wound up paying him for his work.

Until very recently, no one offered to compensate me for work that often took a lot longer than a week, or for my transportation or supplies, etc. It takes a lot of planning and effort for me to get out and about, as I have to rely on others to assist me. Everyone around me is paid for their part, albeit, they are not paid well.

I don’t know if people assume that I get government support and think I don’t need other support or whether they just like to get something for free. Most of my value to these organizations comes from my knowledge of having a disability and being able to talk about it. It can be seen as very specialized knowledge, sort of like a doctor or a consultant that are brought in to share their special knowledge, but they are highly paid. I know that I only have a bachelor’s degree behind my name, but obviously, I have a lifetime of experience in the disability world and it is very valuable.
I’m between a rock and a hard place.

The hard place is I like volunteering. It is very gratifying and gives me a lot of unique platforms, in which to make change. Sadly, platforms don’t keep a roof over my head, or my belly full and it is hard to explain platforms to your family who know you as an overachiever.

On the other hand, I am much better off being monetarily poor, as the government programs that do assist me with my medical needs, namely Medicaid, have very stringent rules about what income I can earn, before they start reducing it. Personally, I can only earn 85. dollars a month, before they reduce every dollar over that by 50%. I am expected to live on less than 500. a month, which is intended to cover living expenses, food, etc. To give you some perspective, my wheelchair alone upwards of 40,000. Yup, the price of a car and that’s just one device. That doesn’t include lifts, shower chairs, computers and technology, or an accessible vehicle. I need a job that makes enough money that I can afford things without Medicaid. Anyone hiring?

The saddest thing is I saw this coming. I wrote a similar piece about this and theAmerican Dream several years ago. I had myself convinced that it wasn’t going to happen to me, but this has been a huge issue in the disability community and for me. There are competing programs within the government. For example,Vocational Rehabilitation is a great program designed to get people with disabilities to work, but Medicaid doesn’t want us to work. One side tells me to work and the other punishes me if I do work. Do you see my dilemmas? Having a disability is expensive.

I’ve been a high achiever all my life. I would love to find a job and work my way up, but it is hard to do when I can’t afford to work.

That’s how I roll.