Disabling Limits Created By The System

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.

Uphill Climb: SSI and Finding Employment

By Erin Tatum

Growing up with cerebral palsy, I always thought of my disability as a set of physical limitations that I had to overcome. Determined to prove that kids with disabilities could do everything that their able-bodied peers could do, I attended mainstream school and never had an aide in class.

By the end of my senior year of high school, I had racked up enough AP credit to be substituted in for a year of college. I was planning to move across the country for school, from my hometown in rural Pennsylvania to the Bay Area. I felt invincible.

I didn’t even know what SSI was until I turned 18. I thought it was generous of the government to give a stipend to people with disabilities. I had no idea how many strings were attached.

UC Berkeley was my home between 2010 and 2013, where I earned a BA in film studies with a minor in LGBT studies. Social activism and understanding niche culture became very important to me, especially in the ways it was portrayed in the media.

Being in Berkeley was my first time being immersed in disability culture, as it was the first time I interacted with a large community of people with disabilities beyond a few weeks of summer camp. The welfare stereotype seemed abstract and I reassured myself that there was no way someone with my academic caliber and opportunities could be ensnared in that trap.

I graduated Phi Beta Kappa and quickly set my sights on my next goal. Given my love of writing and blogging, I hope to become a professional writer in some capacity. My dream career would actually be screenwriting, with the intent of increasing media representation for folks with disabilities.

Beyond that, I was just excited to make my own money doing whatever I could.

My optimism dwindled when the true financial limitations set in.

Needless to say, Pennsylvania isn’t exactly crawling with film jobs. The best destination would be LA, but it would be almost impossible to pay rent with my monthly stipend, no matter how many roommates I had.

Financial independence from my parents is obviously something that I want, a watershed moment that I thought would be as simple as finding the willpower to pack up and move away. However, moving back across the country and adding in the cost of flights, security deposits, and shipping renders the $2000 asset limit laughable.

To be completely honest, I’m not even sure what kind of job I could have without jeopardizing my benefits. Humanities majors often face criticism for narrowing their job market with their obscure field of choice, but the vast majority of my dilemma has nothing to do with my degree.

Whenever I fill out an application, I’m always trying to anticipate how the job could potentially impact my benefits. Will the salary mean that my benefits will stop? How long would it take me to become financially stable enough to live without them, and is that even feasible? Would a promotion or salary raise breach the $2000 cap?

It’s appalling that SSI purports to encourage financial independence, yet more often than not it winds up keeping people with disabilities in perpetual poverty. We need to start exploring less restrictive programs like CareerACCESS that would encourage disabled youth to reach their full potential.

By graduating early, I had planned that my “extra time” could be put to good use kickstarting my career and my ambitions while minimizing the financial drain on my family. I moved back in with my parents almost a year ago and I’m more or less in the same spot, albeit a little wiser. I keep myself busy with miscellaneous unpaid writing and sporadic unpaid internships.

The most bitter pill to swallow is feeling like I’m confirming negative disability stereotypes by being viewed as yet another unemployed disabled person who will presumably live with their parents indefinitely.

I still have dreams. I still have goals. SSI limitations won’t change that. I’m determined not to allow SSI to prevent me from living the life I choose.

Support Erin and other youth with disabilities in becoming self-supportive and achieving their career goals by signing the CareerACCESS petition, following our social media sites (Facebook and Twitter), and sharing Erin’s story! Contact us at ourcareeraccess@gmail.com if you are interested in sharing your experience or opinion on this issue.