Is Climbing the Ivory Tower Enough?

By Shawn Murinko

Like virtually everybody else, you were herded into our higher education system with a promise: if you make the arduous climb up the Ivory Tower the world awaits you with the opportunity to join the ranks of the employed. Therein lies the problem, however, as very rarely does this experience alone prepare you for the journey that lies ahead.

In college, if you are motivated enough to take in the full experience, you may easily find yourself withdrawn into a world of relative passivity entrenched in textbooks and regurgitating idealism in your writing assignments. Sustained interpersonal communication, for the most part, remains optional. The culture I describe didn’t serve me very well as I made my transition into the world of work. Is it an accomplishment to obtain a degree? Of course. If anything, it demonstrates perseverance, initiative and hopefully, in the final analysis, some degree of marketable intelligence which is sought after by good employers.

Unfortunately, checking off the “education box” alone won’t be enough to guarantee employment, especially for those who have a visible disability. Despite our best and well-intentioned efforts to rid our society of stereotypes, they remain as oppressive, ignorant vestiges of a time where people with disabilities were cared for instead of endeavoring to and supported in the quest to care for themselves.

Not long after I passed the Bar exam, I was offered an invitation to interview for an attorney position in the public sector in a small office made up of only three other lawyers. While I was visibly dressed for the occasion, my wheelchair apparently didn’t match the receptionist’s perception of what an attorney looked like. As I wheeled up to the front desk to let her know I was there for an interview, the look on her face and the hesitation in her voice told me how this chapter would end before it even began. She meekly inquired, “For the attorney position?”

Looking back on my struggle to obtain employment, I wish programs like CareerACCESS had existed. Joining the workforce is a daunting proposition for anybody, but even more so for people with disabilities who battle existing stereotypes even before they arrive. Additionally, and perhaps even more critical to the long-term success of employing people with disabilities, is the development of programs to foster sustained employment. CareerACCESS’ initiatives regarding individualized career planning provide the partnerships and supports needed to optimize success and ultimately, satisfaction while working. Simply, while I would still have found myself in a jungle, I wouldn’t have been so alone in my journey to find a pathway into the world of work.

In the absence of these supports, I’ve had to work diligently to overcome my shyness. I’ve had to join committees, volunteer for organizations and attend the occasional over-priced charity dinner in an effort to come out as a person with a disability who is ready, willing and able to work for economic self-sufficiency. I had to find my voice, own my voice, and be willing to share it with others in order to put others in my profession on notice that I had arrived and was ready to contribute in a meaningful way. As difficult as it might be to believe, especially for somebody in my profession, I am naturally very shy. In fact, within larger groups, I would rather sit behind a potted plant (if my wheelchair would visibly allow), then mingle and schmooze. Over time, though, I’ve learned that my preference for introversion wasn’t congruent with my goals and aspirations –it stood in direct opposition of it. It reinforced the perception that I still receive in other parts of my life – that I am either invisible or an oddity.

If you’re still behind the plant, step out. When you do, you’ll undoubtedly discover your voice. It’s likely more important than you realize and it may very well be the key to arrival. Be on your way.

Help us get closer to reforming SSI by signing our CareerACCESS petition here. You can also follow us on Twitter or Facebook!

Shawn Murinko lives in Olympia, WA with his wife and two daughters. An attorney and graduate of Gonzaga University School of Law, Shawn works for the Washington State Department of Transportation and serves as a Commissioner for the Washington State Human Rights Commission.

Receiving SSI: Are You Safe? Or Suffocating?

By D’Arcee Neal

As I write this blog, I’m sitting in my first office that I’ve been at for almost a year now. Thinking about the path that got me to this place is one that is reminiscent for almost all millennials these days, but I’d add that for those of us with disabilities, the hardship is only magnified by systemic inadequacies and limitless red tape.

Social security is for many, a needed relief to help mitigate circumstances where too little money would put you on the streets, starving. In places like North Carolina where I used to live, it provided me a comfortable moment to breathe after school when I had lost my job. But I have cerebral palsy. I don’t drive. And SSI was making me lazy, and complacent in a place where I knew I could do better. After my first internship with NASA in DC, in a city providing me with autonomous transportation anytime, anywhere, I knew I could never go back to living in a place where I called friends for a ride just to leave the house. After studying abroad in Germany, traveling in Europe and completing my Masters in London, I never had any intention of staying in North Carolina, but for those of us who want to branch out after school, current SSI rules make that all but impossible.

For the next two years and some change, I was unemployed and harder still, I lived in DC, on SSI. Being restricted on income is hard enough without a sufficient work history to support you. But when you’re trying to live and find work in the second most expensive city in America? You learn quickly about what my friends and I call “The Struggle.” I lived off a medium suitcase, and a twin bed in a shared room on the edge of the metro where my rent was 85% of my check, because if you wanted to be mobile in the city, you had no choice. I made $20.00 last two weeks for food and giving up 8 bucks for a Netflix account was my only luxury, because if not, I would’ve went crazy. But SSI was there, and I made it work until I worked enough temp jobs and internships to get myself hired to a corporate position. But without the money to save, I calculated trips, planned out resources and depleted myself of a social life completely. This works for some people, but I knew what I wanted out of my life and being tied to SSI was strangling me emotionally.

Part of successful transitioning to adulthood is the ability to make and take risks. To find a job, you have to risk putting your resume out there to be seen by potential employers. That includes going where jobs are and where managing your disability is easier through more transportation options or better healthcare benefits among others.  But unlike able bodied Americans, the cycle for restrictive or discriminatory employment practices, coupled with social security’s vicegrip on financial statuses, require people with disabilities to remain tethered to an antiquated system that does more harm than good. The answer is simple. People with disabilities deserve good jobs, good pay, and good benefits, rewarded through employment. This is why the CareerACCESS initiative is so important. By restructuring the way people with disabilities access and engage employment, we can change the nature of the conversation. Finishing school and finding a job is hard enough. Having a disability shouldn’t make it more so.

Help us get closer to reforming SSI by signing our CareerACCESS petition here. You can also follow us on Twitter or Facebook!

D’Arcee Neal has worked in disability advocacy and policy for over seven years with a variety of clients in independent living centers, non-profit organizations and the federal government. Receiving his MA in Creative Professional Writing from Roehampton University in London, he is also a novelist and screenwriter utilizing disability, race and identity as themes. Currently, he works at United Cerebral Palsy National in Washington D.C. as the Manager of Institutional Giving, where he fundraises with corporations partnering with UCP and its affiliates. 

The Search for Self-Sufficiency in the Face of SSI

By Gabriel Chesman

When I was 21 years old I sustained a random and still unexplained catastrophic spinal cord stroke which has left me a quadriplegic. Today, about 7 years later, I still face the overwhelming daily cost of healthcare, which unfortunately remains largely uncovered by medical insurance or government assistance.

In 2007, I was living in Philly where I was enrolled at Drexel University. Having just celebrated my 21st birthday in August, I was looking forward to a new semester: starting classes, hanging out with friends, playing my guitar. But on September 17th, my world turned upside down after I began to experience lower back pains and tingling sensations in my extremities. A friend rushed me to the hospital where I rapidly started losing sensation in my limbs. Within the hour, I became completely paralyzed and unable to breathe on my own. The medical team diagnosed a rare and still unexplained spinal stroke. I spent the next seven weeks in the ICU, battling a series of infections, before being transferred to a rehabilitation center in NJ.

After months of grueling therapy and health complications, I finally regained some use of my left arm and the ability to breathe on my own, but I’m in a wheelchair, unable to walk or take on the simplest tasks. Eventually, I was able to return home. Finding normalcy in a world built for the independently mobile isn’t always easy, but I keep forging ahead. I have been working for two Public Relations firms that specialize in Corporate Social Responsibility, providing Social Media strategy and implementation. Working gives me purpose, a reason to get up every morning. However, it’s disheartening to put all my effort into pursuing a career that, due to SSI, limits my growth and potential.

The high cost of ongoing health and personal care is well beyond the ordinary and would tax anyone’s resolve. Yet, in order to receive necessary support from the government, I’m only allowed to earn a meager salary. If I step over the set income, the benefits disappear. I’m perpetually stuck between a rock and a hard place. For the entire disabled community, an already largely unemployed demographic, government benefits make employment nearly impossible. We deserve the opportunity to join the workforce without being penalized.

With CareerACCESS, there is a chance for young adults with disabilities to break through the glass ceiling. By allowing the accumulation of assets and the opportunity to build a career without losing SSI benefits, CareerACCESS offers a beacon of hope. It’s only a matter of time before the days of Social Security disability programs encourage equal opportunities instead of limiting our potential.

Help us get closer to reforming SSI by signing our CareerACCESS petition here. You can also follow us on Twitter or Facebook!

Contemplating Careers with Chronic Illness: Thoughts on Employment As A Disabled Young Adult

By Maddy Ruvolo

This year, I wrote my senior thesis on young adults with chronic illnesses. As a young adult with a chronic illness myself, it was coming from a personal place. I interviewed people about their experiences being chronically ill, how they perceived illness and how people around them perceived illness.

One of the questions I asked all of my interviewees was about employment. Were they working? Did they think they’d be able to work in the future? And then more specifics: full time or part time? Desk job or something more active? Did they know about workplace accommodations? Did they know about SSI?

Answers varied, but every single person I talked to was worried about working and the future. Some thought they’d have the stamina to work part time but knew that wouldn’t be sufficient to pay for medicine and doctors appointments. One young woman was on SSI but wanted to find a job if her illness ever stabilized. Others were vaguely aware of workplace accommodations but didn’t know what accommodations would mean for them. The people I spoke with told me they felt overwhelmed and underinformed.

I could relate: the prospect of finding a job as a disabled person is daunting. You worry about discrimination, accommodations, an inclusive workplace environment. I was nervous, wondering if I would be able to balance work with regular pain and fatigue (not to mention staying on top of physical therapy and doctors appointments and meds refills). I knew that disabled young adults have a disproportionately high unemployment rate.

I started looking for a post-grad job during my last semester at Scripps College, hoping to find something in disability advocacy. And I was lucky; I found a great job that I love. I received advice from disabled people throughout my job search that was (and continues to be) incredibly helpful. I am thrilled to be working in this community that means so much to me.

But to be honest, I’m still nervous. My health is stable enough right now, but I’m very aware that Dysautonomia is unpredictable, and that my future remains uncertain. I am optimistic, but like any disabled person, I know I need a back up plan.

That’s one reason I’m excited about the CareerACCESS initiative. Knowing that this program would reform outdated policies (like the “incapacity to work” test) and give disabled young adults career and benefits guidance makes me feel like I’ll have more options if the status of my health changes.

Even if I personally never need the program, I know that there are so many people who would be helped by it. The folks I interviewed for my thesis, my friends in the disabled students organization at the Claremont Colleges, the advocates I met through the AAPD internship program last summer, and the millions of other disabled young adults who are trying to find their way – so many of these people would benefit tremendously from better employment policies and services.

Ultimately, if a disabled person can’t work, that’s ok. A person’s value is not determined by their ability to work. But if a disabled person can work, and wants to work, then they should have the guidance and the information and the options to make that happen.

Help us get closer to reforming SSI by signing our CareerACCESS petition here. You can also follow us on Twitter or Facebook!

Maddy Ruvolo is a Systems Change Advocate at the Marin Center for Independent Living. She is also one half of Disabled Girls Talk, a podcast about coming of age with a disability. She graduated Phi Beta Kappa from Scripps College in 2014, where she was the president/co-founder of the Disability Illness and Difference Alliance. She is the Class of 2014 Recent Graduate Trustee, representing current students and young alums on the Scripps College Board of Trustees. You can find her on twitter @maddyruvolo.

SSI, College and Working: Between a Rock and a Hard Place

By Kay McMillan 

My parents raised me with the belief that I could do anything I want despite my cerebral palsy including going to college and receiving a good paying job. I always had a strong inclining of what I wanted to do as a career – be a disability rights advocate.  I knew that I wanted to make the world a better place for people with disabilities, so younger generations did not have to fight the same battles that I had to fight.

During my senior year of high school, I started the normal college process of applying to schools and making campus visits.  By the second half of my senior year of high school, I had decided that I wanted to attend North Carolina State University in Raleigh, to pursue a degree in political science.  At the same time, I started to work with Vocational Rehabilitation, and they recommended that I apply for SSI.  I was approved in time for when I started college.

SSI helps me to offset some of my living expenses, including the cost of my dorm room and meal plan.  I also have an additional cost because I am also paying for my roommate’s room and board in exchange for her assistance overnight and in the mornings.  Also, SSI and Medicaid help me to obtain the personal care assistance services to live independently and to get through school.

Since I am currently in school and not working, I don’t have to live under the looming threat of losing my benefits because I am making what the system deems as “too much money” to receive SSI.  However, I regularly fear that I will lose my benefits upon graduating college and being gainfully employed, causing me to be stuck between a rock and a hard place.  I am not able to live on SSI alone, but I couldn’t pay for my personal care assistants or live independently without SSI.  I would have two bleak options: either have a job and live with my parents or keep my SSI and live with my parents because I wouldn’t be able to afford to live on my own.

The bureaucracy and the double edged sword of social security is not a problem that affects just people with disabilities.  Employers are missing out on hardworking, reliable employees.  Too many young adults with disabilities are educated and have the qualifications to work at a particular job but are scared of losing their benefits if they have a job. Also, if people with disabilities are able to work, they can contribute goods and services to the economy and not be a drain on society.

Initiatives like CareerACCESS will help remove the catch 22 that too many people with disabilities find themselves in terms of SSI and working.  Hopefully, the work that we do today will make it so that younger generations of people with disabilities don’t have to choose between having a career, keeping their benefits and living independently.

 

Help us get closer to reforming SSI by signing our petition here. You can also follow us on Twitter or Facebook!