For some receiving disability benefits, the desire to work will never cease
BY Tauhid Chapell, Kayla Epstein
April 06, 2018

Last year, The Washington Post explored how rural American communities have been reshaped by the significant growth in disability programs over the past two decades.
As the series of articles progressed, we heard from readers nationwide about their experiences with disability benefits. A common theme emerged from their stories.

One of the most misunderstood aspects of the federal disability programs — Social Security Disability Insurance, for those who work, and Supplemental Security Insurance for the disabled poor — has to do with working. Some recipients subsist on benefits alone, unable to work at all because of their disability, and some find paid part-time work. (Both programs come with health care — Medicare with SSDI and Medicaid with SSI.)

Others work for pay up to modest income limits allowed by the programs or are seeking employment. Many others perform unpaid volunteer work. Yet whether they work for money or not, disability recipients are often stigmatized in our work-obsessed culture.

We spoke to five recipients around the country about how they maintain active and fulfilling lives. Read their stories below.

The volunteer
Richard Lamb, 57, of Snoqualmie, Wash., is a retired senior systems administrator who worked for several corporations, including Boeing and Microsoft, before having to retire in 2011 because of symptoms stemming from his condition, myalgic encephalomyelitis (ME), a condition that results in extreme fatigue and other symptoms exacerbated by physical or mental exertion. He receives money from SSDI and from the Department of Veterans Affairs for his hearing loss.

What I have is myalgic encephalomyelitis, an autonomic and neurological disease that renders people with, maybe on a good day, 25 percent of the energy that they would otherwise have.

You wake up in the morning and you have 25 spoons of energy. You go through your day, you do normal stuff. You go to bed with 10 spoons of energy. Wake up, repeat. I wake up in the morning, I might have five or six [spoons] on a good day.

My daily routine is get up in the morning [and] I may or may not take a shower. If I take a shower, I generally lie down after that to regenerate or regain my energy after that output. I’m very active at the U.S. Department of Veterans Affairs, and participate in two different research projects there. That’s been helpful for me, because I think one of the things I really struggle with is finding a method to give back that doesn’t kill me.

I do like to get out of the house and socialize with society. We have lots of trails right out our back door and they’re wide enough for my chair. I think the day I took delivery of the wheelchair, we went to the waterfront in Seattle with the wheelchair and there’s a long walking path up there right on the water, and that was fun.

Even though I’m out in my wheelchair in society or on a mountain biking trail, I’m still disabled and still sick. None of that goes away. [Those activities] just put a smile on my face.

The Uber Eats driver
Christine McGee, 29, of New Orleans suffered an aneurysm in 2007 and anarteriovenous malformation was diagnosed, requiring her to go on SSI and SSDI. Today, she’s making steps toward reentering the workforce by driving for Uber Eats and she no longer receives SSI.

Once I graduated college and time went on, I wasn’t able to find a job in [the criminal justice field]. I had to do something, because the Social Security Disability Insurance wasn’t really helping. I saw Uber Eats was looking for drivers, so I decided to try and see how that would help.

We usually start out doing Uber around lunchtime and pretty much we work the lunch hour and then after that we take a break till around 6 p.m. Then we go back pretty much [until] 8:30 or 9 p.m. That’s usually when it’s the busiest for Uber, including weekends, too.

I have a spinner knob [on the steering wheel] so I’m able to drive. The only other thing with me being disabled [is] carrying a lot of items. That’s where my wife comes in. We do it as a team.

Being an Uber Eats driver gives me a little more breathing room financially. Of course, being a recent college graduate, I am looking for a career in a different field, but Uber Eats serves as a stopgap until I get that perfect job.

My wife is a professional pet sitter, so whenever she gets any jobs like pet sitting or dog walking, I also help her with that, too. If anything else comes up, [like] doctor appointments, it allows us to have flexibility. If we want to simply just go to the park one day, feed the ducks, it’s nice to have that break. And it’s important that we don’t have to wait till the weekend or certain off days if we just feel like doing that.

The grad student
Sarah Schwegel, 24, is a graduate student at Saint Louis University in St. Louis who is working toward a master’s degree in public administration. She hopes to use her education to help others with disabilities navigate government bureaucracy. She has spinal muscular atrophy Type II, for which she receives SSDI benefits.

I decided to go to grad school for public administration so that eventually one day I can either work in a nonprofit to help people with disabilities, or I can run for office or work as a bureaucrat in Medicaid or something. And [I can] make sure the policy has teeth and is really effective. There is not going to ever be efficiency or accountability until the programs are reformed somehow. I swear if I ever run for office this is what I’m going to campaign on.

Right now I’m a graduate assistant in the Political Science Department at Saint Louis University. It’s a 20-hour-per-week gig. However, because of my disability, I had to have some accommodations made. I’m now doing only 15 hours a week. Movement for me is slower, so everything takes me a little bit longer. And managing 20 hours a week plus three classes plus my health needs was really too much and I felt like I wasn’t getting adequate rest. I wasn’t taking care of my health needs. I’m taking three classes this semester, which is a full-time course load for grad school.

I’m involved in several volunteer organizations. I do advocacy through Paraquad [a Saint Louis nonprofit organization that helps disabled people lead independent lives]. I was an intern there through school last year and I continue to volunteer as they’ve needed me.

Sarah also plays power soccer, a version of the sport for athletes who use wheelchairs.

It’s super fun and super competitive. I could talk for hours about how great soccer is and how much it’s benefited me. I want to try out for Team USA eventually.

The teacher
Min Jung, 41, helps teach physician assistant students at Temple University in Philadelphia. She was diagnosed with degenerative joint disease and fibromyalgia in 2012, rendering her unable to complete her doctorate studies. She receives SSDI and is part of Pennsylvania’s Low Income Home Energy Assistance Program.

During the school year, I worked helping to teach and train medical students at Temple University. I would really love to be a physician assistant, but I don’t have the money to go to physician assistant school.

There are a lot of online communities [for those] who have chronic conditions. I’m active in an online community called Ravelry [for knitters and crocheters]. You can form a community of people who have chronic illnesses who may not have the same type as yours, but can still find commonalities and really learn about each other.

I went and I got an education. I think I have something to give to society. I still have a bunch of things I want to get done. I had to drop out of my doctoral program and I never got to complete my research. And that makes me really sad. That’s frustrating to me. Returning to a vocation — a true life calling — would mean that my intellectual and mental health can be restored, where my physical health cannot.

The caregiver
Tawne Nelson, 47, is an Air Force veteran and recent graduate of Thomas Edison State University in Trenton, N.J. She has lupus, rheumatoid arthritis and Sjogren’s syndrome, an immune system disorder that causes symptoms like dry eyes and mouth. Tawne is hoping to get off SSDI in the near future and ease back into the workforce with part-time work. She also takes care of her mother, who has Alzheimer’s disease.

I decided, while I was waiting for disability benefits, to return to college. The Department of Veterans Affairs provided some assistance for me while I was at school. Going back to work is like a whole new adventure for me with this lupus. I’m just starting to learn what’s out there, what’s where.

The ultimate goal, to try not to waste a degree, is to attempt to at least — even if it’s only part-time — to return to work at some point. But sometimes with lupus, my days are so unpredictable that I’m nervous about the workforce. If I’m at work and a flare comes up, and I just start to feel drained and fatigued, I’m not in a position where I can just get up and go home.

I spend most of my days trying to get a résumé done. My job search continues, although I have not been pursuing employment as aggressively as I would like to be. There are some family issues that I have to address before I will be able to give my complete attention to returning to the workforce full-time.

My sister and I are the primary caretakers for our mother, who has Alzheimer’s. Sometimes, even though it may be painful, I have no choice but to get up. Right now I’m not only juggling my own sickness and illness. I’m juggling the care of . . . an adult.

__

washingtonpost.com


First Name:
Last Name:
Email:
SIGN-UP