Being a creative professional is difficult. It's an undervalued commodity that many people need, but no one wants to pay for. Developing a reputation in this industry requires years of dedication, and there's no guarantee of success. Most artists endure the difficulty because they love the craft. I, on the other hand, got into it because I thought it would lead to money and women. Somewhere along the way I fell in love with the craft, though, and now I have no choice but to continue. Even without the money and women, which never came… Even though I'm stuck in an endless loop of pouring my soul into something that people will only enjoy for five minutes, I have gotten so much joy from being a creator. It's a privilege. The more I do it, the more I want to grow and challenge myself to do more. Every day I want to think bigger about the type of art that I can make and the type of people that I can collaborate with. I want to create as much as I can for as many people as I can. And I want to do it for as long as I can. And over the years, this drive has rewarded me. I've developed into a skilled writer, filmmaker, and performer. I travel the Midwest as a standup comedian, I make short films that people love, and I contract for businesses to pay the bills. It's a rare privilege, and every day I remind myself that I'm probably living someone's dream. But there's so much more I want to accomplish. Unfortunately, as a Medicaid recipient, I find myself struggling against a system that tells me I should stay poor. I was born with neuromuscular dystrophy. And while it doesn't limit my ability to create, it does limit my ability to perform many daily tasks. I use an electric wheelchair to get around and require personal care to meet my basic needs like showering and getting out of bed. Seven days a week, people are paid to come into my home and help me with these things. That expense exceeds $30,000 a year, but it's necessary for me to get by. I rely on Medicaid benefits to cover the cost, but they come with conditions. In order to maintain eligibility for Medicaid, I have to follow a set of rules related to my income and assets. In the state of Iowa, where I live, people who utilize Medicaid are not allowed to have more than $2,000 worth of financial assets. This is regularly reviewed by the Social Security administration. If my bank account exceeds the $2,000 limit, I have to spend those assets down within 30 days. My income is also restricted. If you qualify for MEPD or "Medicaid for Employed People with Disabilities," you are allowed to make 2.5 times more than the federal poverty limit. That means as a single man living alone, I cannot make more than $39,125 in a given year. And this is particularly frustrating in my career, because it doesn't just limit the amount of work I can take on. It limits the type of work I can take on. I have to frequently turn people away because if I make too much, or have too much in the bank, I lose my Medicaid. This is especially concerning because my income as a freelancer is inconsistent. The asset limits enforced by Medicaid make it impossible to stretch my paychecks when I have a good month. I do my best to pay ahead on bills and software subscriptions where I can, but I often have to spend down money in order to stay eligible. This prevents me from taking on bigger, multi-month projects. As a video creator, that takes entire genres of video, like animation and long-form content creation, off the table. And this is a tragedy because we need the voices of disabled creators in this space. We need disabled people working in all kinds of industries, at all levels. And they are capable of doing so. These overly restrictive rules are rooted in false ideas about what it means to have a disability. They were put in place by people who believed if you were sick enough to need Medicaid, you were not capable of working. It's simply not the case. Disabled people can work, and they want to. That will only happen when these arbitrary rules and restrictions are lifted. Allowing more people to contribute and play an active role in society is a decision that will benefit everyone. And it's one we should have made a long time ago. Luckily, people all over the country are fighting to make this dream a reality. In 2023, “Work Without Worry” was introduced in the U.S. House of Representatives with the goal of removing employment barriers for permanently disabled Americans. States are working on passing measures as well, and Tennessee has already done this. You can help us get these bills across the finish line. The United Spinal Association is dedicated to advocating nationally and locally. You can sign up and get involved today. In addition to working with an organization, you can also call your local representatives, or write letters. Share the legislation with them if there’s nothing in your state yet. Only with your help will people like me get to work without worry.
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