Thursday, April 11, 2019

I’m disabled. The Trump administration’s new rule could take my SNAP anyway.

  Last month, the Trump administration introduced a new rule to cut Supplemental Nutrition Assistance Program (SNAP) benefits. The rule is geared towards so-called “able-bodied adults without dependents” who are unable to document 20 hours of work a week. When I heard the news, I double-checked my schedule, and I was in the clear: 35 hours that week. If I had missed a shift or two, then the outlook wouldn’t be so optimistic.

  My fibromyalgia doesn’t care about my work schedule. It doesn’t time its flare-ups according to my current proximity to heating pads. Even more than Beamer, my service dog, fibromyalgia is the most constant presence in my life, on my mind at all hours of the day. In the morning, my joints could be so sore that I forgo my cup of coffee because I can’t trust my grip and I don’t want to clean up another shattered mug. By the afternoon, those aches may give way to a fog that clouds my mind until any attempt at sustained concentration feels like running up a downward escalator — a lot of effort, but little payoff.

  People with disabilities are supposed to be spared from the cuts. But in practice, many people with serious health conditions will be at risk of losing food assistance, because SNAP uses other government programs with an extremely limited definition of disability as proxies for disability status. So, I’m on the chopping block.

  If I need to miss a shift because I woke up feeling particularly sore or because the afternoon fog rolled in early, the benefits I rely on to eat are threatened. Good day or bad, doctor’s appointment or not, I have to make sure I’m on time and ready, smiling at the customer service desk of the museum that is my workplace.

  Managing my condition is a full-time job, in addition to the job that actually pays me. To be able to show up for work, I have to go to three doctors’ appointments per week: two sessions of mental therapy and one session of occupational physical therapy. That doesn’t include the constant stream of other specialists who might have some new insight into my pain management: psychiatrists, rheumatologists, and pulmonologists.

  All told, the copays add up to about $240 a month, just for the therapy sessions. That’s 12 times what I get from the Supplemental Nutrition Assistance Program. 20 bucks a month for food sounds trivial, but anyone who has ever really struggled knows that $20 can make or break you. For me, it’s the difference between an extra visit with a specialist or suffering until the next paycheck hits.

  That doesn’t mean $20 is enough — like most of the strategies I use to treat my disease, SNAP is inadequate but essential. But the administration is putting it at risk with this new rule.

  All of us have limited time and energy to spend in our 24 hours. But for some of us, to make it through requires more effort than others. In the three years since my diagnosis, I’ve come to terms with the fact that fibromyalgia isn’t going away. The appointments and the meds and Beamer don’t care about my work schedule because they make my schedule possible in the first place. With this latest rule, the Trump Administration is doing the opposite — they insist that I continuously prove that I’m building a life for myself. Why can’t I just build it?

  Editor’s note: To leave a comment on the proposed regulation to limit states’ ability to waive work requirements, visit

  About the author: Lindsey O’Connell is a disability advocate in Boston.

  This article was published by

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