By Jimmy Curran
Growing up with Spinal Muscular Atrophy (SMA) type 2, I have always relied on others for assistance with activities of daily living. Up until the age of 18 this responsibility fell upon my family. With no assistance from the government, my mother raised me with the support of my other family members; however, when I turned 18 and it was time to go to college, I began to learn about the resources th15at are available for persons with disabilities such as myself including SSI. In my experience thus far, I found, to put in the words of the great Jay-Z, government benefits including SSI can be a “gift and a curse.”
Throughout college at Temple University, SSI enabled me to maintain my independence and thrive on a college campus. Financially, it allowed me to afford the resources I needed to succeed as a student such as books, adaptive technology, and other items I needed for my dorm room. With that assistance, I was able to learn to live independently on campus, become involved in many extra curricular activities, and obtain my bachelors degree in finance in just four years. While at Temple, SSI also enabled me to complete two internship programs in my area of study.
It wasn’t until I graduated and started seeking employment that I learned how SSI could also be somewhat of a “curse” in pursing financial independence. SSI and the waiver program limited me in my job search as the system is fragmented across state lines. Also, my eligibility for medical assistance was contingent upon my eligibility for SSI. This created a dilemma because once I got my job, I had to worry that I would lose my medical assistance benefits as well as SSI if I took the position. Unwilling to be oppressed by the system that has enabled me to be in this position, I contacted my local center for independent living, local politicians, and state officials. It wasn’t until I reached out to several media outlets that I found a solution to this SSI dilemma. Thanks to someone who read about my story in the newspaper I now am approved for SSI Special Recipient status.
My experience has taught me several lessons about SSI and government benefits. For one, the Social Security system is extremely convoluted. Upon learning that I would lose my benefits and SSI if I were to take on employment, there were very few people who were aware of the resources that exist that would enable me to work and receive benefits. To this day, I am still unaware of the income threshold that would disqualify me from being eligible for SSI Special Recipient status. While I am grateful to benefit from the system on a daily basis, there are reforms that have to be made so that the system can enable people with disabilities to live independently as opposed to fostering the dependence of people with disabilities on the government.
In order to do my part to show people just how able people with disabilities are, I have created a clothing brand, disABLE. I created the brand to combat the misconceptions that a person’s disability “disables” the individual. Our website, www.disablethebrand.com, also has a blog section where we share the stories of people with disabilities who disable their limits. I believe if people were aware of how able people with disabilities are, the need for reform and/or alternative programs such as CareerACCESS would be absolutely evident.