When I Feel Defined by My Work as a Person With a Disability


“What do you do for a living?”

That’s the first question asked at any networking event. It’s the second question potential in-laws ask after the pleasantry of “Where did you two meet?” has been resolved. Work status comes up on Facebook. Your friends of friends want to know. Heck, I want to know.

Am I defined by my disability or my career?

I used to work full-time as a lawyer, advocating for impoverished individuals with disabilities seeking public benefits. Due to a relapse of schizoaffective disorder last year, I became one of them. I didn’t earn a dollar for 14 months.  My sympathy turned into empathy.

Every interaction with neighbors, former colleagues, people I met at weddings became a self-judgment. A simple “How are you?” internally turned into “What are you doing with your life?” Well, I was being sick. I couldn’t decide between shrugging off the question with a quick smile and a “Fine” or telling them that I just spent 10 more days in the psych ward. I wanted them to know I couldn’t work. I hoped they wouldn’t judge me more than I was judging myself.

As my symptoms lessened, I took an adjunct professor position teaching social welfare policy. One of the recurring themes was valuing the worth of the poor. Given limited funds, you make choices of whom to help. In health care, historically, veterans have gotten a lot of support. Nationwide, poor children have the federal Children’s Health Insurance Program (CHIP) and Medicaid. Unemployed adults, including many individuals with disabilities, at the same level of poverty may not get health coverage, entirely based on the state they live in. But why?

Often, it comes down to work. Veterans provided a unique service defending the country.  They “earned their right to care.” This was once a covenant that has been degraded in budget cuts. Children cannot work, but it’s presumed that they will grow to be productive members of society, so they get some financial nourishment. They will be taken care of until their 18th birthday, when they turn into adults and are expected to get a job. If they can’t find one, depending on where they live, society may turn them out to the wolves of uninsured status. Unemployed people are expected to have jobs somewhere, somehow. Even people determined disabled by the United States government might not have Medicaid or Medicare depending on which loophole they fall through. There is a Medicaid program that might help if the disabled person works.

Given that society already seems to have categorized my worth by my job, it makes sense that I would have, too, before my relapse. Mental illness is invisible. I look able-bodied. Shouldn’t I be working? Well, if you can’t… don’t. There shouldn’t be shame. Yet I saw and see it coming from everywhere — including from the advocacy community that stresses inclusion in most things. It seems, for me, that too often the focus is on providing disabled individuals more access to the workforce than raising Social Security benefits. The average amount of Social Security Disability Insurance benefits is only $1,165.76 a month. It is hard to pay rent on that, never mind the basic necessities of multiple medications, endless co-pays, quasi-nutritive food, the non-plush toilet paper, and the dollar store brand of coffee filters and shampoo.

I am a big supporter of inclusion, but I wonder about the focus on employment. Is a disabled person defined by his/her work? I know I am sometimes, although it may be largely my own perception. To me, work just scratches the surface of value. What are your thoughts?

Follow this journey on Sarah’s blog.

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