By Attorney Mary B. McKee
Nothing would thrill me more than to interview Gus, my 14-year old son with Down syndrome, for this article, but I can’t because he can’t talk. “Non-verbal,” the verbal call it. It’s a pretty bright line. Like the difference between virgins and non-virgins, or between the eastbound lane and the westbound lane. If you drift over that double-yellow line, you know it.
My one daughter’s summer-reading book report was about Ratfink, by Marcia Thornton Jones. In her paper, she recounted, objectively, the part of the plot that involved the boy’s Grandpa, naked, singing in the kitchen. In the final, subjective paragraph, the one where you bring it home, she wrote: “I can understand how Logan felt. I also have a family member with problems.” Our family has been spared Alzheimer’s (so far), but not the awkward mix of pain and humor of having a special-needs individual in our midst. My other daughter and her friends barely notice Gus jumping on his small trampoline behind the green chair while we watch a movie in our living room. The neighbors have grown familiar with the summertime sound of his wild crooning out his bedroom window as he “sings” with total abandon to his country music favorites. Gus’s grandparents, parents, teachers — we all regularly dream about Gus talking with us, clear as day. I think it’s called “wish-fulfillment.” Then we wake up.
Under Social Security’s rules, we will never have to prove that Gus is disabled. He meets Listing 10.06, a “bright line” in the Social Security system. A person with Down syndrome–like a person in a wheelchair or in a coma or on kidney dialysis–would be found disabled in short order. Our family is “lucky” that way. Sometimes the distinction between people who have severe disabilities and people who don’t is not so stark. That’s how I make my living, as a Social Security disability lawyer, trying to brighten the fine lines that the Social Security system blurs, trying to show why my client falls mostly to one side of the broken white line that separates the haves from the have-nots.
Unlike Gus, and us, his family, other families not only have to deal with the day-to-day drag-down of disability, but they also have to prove and document their disability claim. They must show, to Social Security’s satisfaction, that they themselves, or their school-aged child, or adult daughter, or 52-year-old baby brother, is disabled and will be for at least 12 months. Because other lines are not so bright as having that undeniably extra chromosome. The claimant may not have a recognizable “syndrome” because no one’s discovered it yet. Or, as it was with HIV/AIDS years ago, maybe no test yet exists for what the person has. Or the x-rays Social Security paid for as part of a consultative exam with a state doctor just aren’t showing what an MRI would show (if only the person had health insurance to pay for one, but our system still ties health insurance to a job, unless you’re down to one car and under $1,500 in the bank, and even then, county Medicaid’s tough to come by.)
Some people with severe impairments have the fortitude to work despite their disabilities. If a person with Down syndrome–or any other disability for that matter–is able to earn $1,000 gross a month at a regular job, they start to raise questions in Social Security’s eyes about whether they’re really disabled or not. The line is so fine, it’s almost indistinguishable between a high-functioning, developmentally delayed 22-year old student ending his four extra years of high school and a young single mother with untreated anxiety and depression who’s still trying to get her GED looking for work in a weak economy. They could probably both pick up the room-service trays people leave outside their hotel rooms and fold the fresh towels. But as we find ourselves saying more often these days to callers who have been denied benefits, there’s a big difference between unemployment and disability. To Social Security, on paper, a young man with CP who earns $1,000 a month at his uncle’s hardware store sorting paintbrushes looks the same as the 56-year old lady behind the deli-counter whose knees hurt so bad she’s had to cut her hours and now makes only half the $24,000 she made last year. Or the computer graphics whiz whose bouts with schizophrenia barely permit him to hold onto his pizza delivery jobs. Substantial. Gainful. Activity. Put them all together and unless you can show that your work is subsidized or sheltered or supported, or really a string of 5-week long jobs connected by unemployment checks, you may have a hard time convincing Social Security that you belong in that eastbound disability lane, the one with cash benefits and health insurance, instead of the westbound unemployment lane, now at a standstill, choked with traffic, just waiting for that light to change.
Sometimes I wonder what our three teenagers, Gus and his sisters, will do for a living. (Right now, we’re all hoping Gus might find a niche at the library reshelving movies according to the colorful dot on their spine.) So often in our work at Hickman & Lowder, we meet siblings of individuals with disabilities who wind up in the helping professions, as special-ed teachers or physical therapists or counselors. (Of course some just get away, as fast and as far as they can.) I have no ready explanation for my own career. I was wrestling with working families’ health & safety issues for years before Gus came along. Neither of my parents nor any of my siblings has a disability, at least last time I checked. Or maybe they all do. Maybe disability isn’t a line at all, fine, bright or otherwise. Maybe it’s a matter of degree, a continuum with all of us more, or less, able to function, mentally or physically, at any given time in our lives. The dysfunction for some lasting only a single morning after a long night’s labor, a couple of months back in the ’80s, ever since the back injury, a whole lifetime, or just the moment before we die. Gus has his spot on the spectrum of the human condition, and the rest of us have ours. Gus becomes distressed if he encounters a baby crying in the grocery store or senses that one of his sisters is upset and, concerned look on his face, goes to pat them on the back and grunt his sounds of comfort. For that instant, he’s the strong, able one. For a little while, he gives what he can to someone less fortunate than he is. I like to think he takes after me a little bit that way.