WORKING WORLD: Finding a Job When You’re “Totally Disabled”

By Tamar Asedo Sherman

Title I of the Americans with Disabilities Act (ADA) forbids discrimination against people with disabilities in employment, but it’s not so easy to enforce. You have to file a formal complaint with the Equal Employment Opportunity Commission to protect your rights, and proving discrimination can be tough.

I’ve been denied many jobs in the past 10 years, since being labeled “totally disabled” by the Social Security Administration. At the time, I couldn’t walk without the use of a walker and was unable to continue performing the duties of my job, which was running a toy store in a quaint village on Long Island, New York.

But back then, 15 years after getting a preliminary diagnosis of multiple sclerosis (MS), I didn’t think of myself as “totally disabled.” That designation hit hard. It hurt. Was I really totally useless? Was I not going to be a productive member of society ever again? Surely I could do something!

I found that the system wasn’t set up to help me use my abilities. It focused only on my disability. I had to assess my abilities and find a job to match. My cognitive abilities were intact. I could still use my mind to think and my fingers to type, so after closing my toy store, I resumed my previous career as a freelance journalist. I knew I could interview people on the phone or meet them at an accessible location. Working part-time so as not to place undue stress on my time or physical endurance, I was able to continue to receive Social Security Disability benefits as long as I didn’t earn more than a set amount of money each month. That figure increases each year and is now set at $860 after deducting disability-related expenses from my earnings.

For a few years things went well. I wrote regular columns for my local newspaper, Newsday, and a weekly magazine, USA Weekend. But then the commissions tapered off and I got lonely working alone at home, not getting to see other people. The life of a freelancer was isolating without any colleagues to socialize with or bounce ideas off of. I wanted to get a job outside the house.

Easier said than done. I regularly checked ads in the newspaper and sent off letters and resumes for many editing and writing jobs for which I was way overqualified. No one knew I had a disability, yet they didn’t respond. Perhaps they thought I wouldn’t work for the low salaries they were offering. Maybe they were right.

So I started networking and following up on tips from friends and other contacts. I sent out résumés and went on several interviews. Two jobs involved doing research online, a third was coordinating a psychology research project at a local university. My disability was irrelevant for all, since they were sedentary jobs. Although the interviews went well and the jobs seemed appropriate, I was never asked back for a second interview.

Then came a job opening at a nonprofit agency that worked with people with disabilities. Perfect, I thought! But the director rejected me because I had MS and wouldn’t be able to help set up for conferences and meetings! The ADA didn’t help, unless I wanted to sue.

Discouraged, I began researching a career that would turn my disability into an ability: I would get a master’s degree in rehabilitation counseling. I had heard that federal funding was available to help students pay tuition. Even better, people with disabilities were urged to apply.

After meeting several rehab counselors and the director of the program, I was enthused about returning to school some 30 odd years after earning my bachelor’s degree. Rehab counselors work with people with disabilities to help them become more independent and productive members of society, with the ultimate goal of returning to work, if at all possible. Advocating for equal access to goods and services, public and private facilities is my passion and one aspect of the profession.

I enrolled immediately and will graduate this spring. I got a part-time job as an employment specialist at an organization for people with all kinds of disabilities. My job is to assess the interests and abilities of people who have acquired disabilities and cannot continue to do the jobs they previously performed. I recommend jobs they might like and be qualified to do, with or without additional training.

I’m productive and I find the test takers relate to me readily. My wheels-and my experience-make me more qualified for this job than someone who is able bodied!

Tamar Asedo Sherman works as an employment specialist at UCP-Suffolk
in Hauppauge, NY. She can be reached at action@unitedspinal.org.