TOUCHED BY LYME: NPR’s “Unfit for Work” has troubling implications for those disabled by Lyme disease
Guest blogger Barbara Arnold, an attorney who specializes in helping Lyme patients get the disability payments due to them, questions the underlying assumptions put forth in this radio series.
National Public Radio has recently broadcast a series of news stories concerning the increase in the number of recipients of Social Security disability benefits. The program, called “Unfit for Work: The Startling Rise of Disability in America,” correlates this increase to economic trends over the past three decades. The series claims Social Security Disability Insurance (SSDI) is being used (and abused) as a de facto welfare program by workers with outmoded job skills and lawyers looking to achieve vast revenues.
The series has been broadcast in segments on All Things Considered and Marketplace, and in its entirety on This American Life. As I listened to the reports, I found myself disturbed by some of this program’s underlying assumptions about what it means to be a patient in America. I am further disturbed by the effect those assumptions may have on the lives of Lyme patients. The program’s narrator and chief reporter, Chana Joffe-Walt, takes issue with the current disability evaluation process. She is particularly suspicious of the part of the process which evaluates a claimant’s individual capacity to perform the work functions of existing jobs. According to “Unfit,” making this evaluation part of the definition of “disabled” has led to claims being granted that would have been denied under an older framework. Joffe-Walt cites the expanded definition and what she calls the “Disability Industrial Complex” (meaning lawyers, representatives, and advocates like me) as a kind of dual-cam engine, driving the rise in approved claims.
“Unfit” draws attention to changes in the law that occurred in the mid-1980s. Broadly speaking, prior to 1984, federal disability was almost entirely a medical evaluation. That is to say, regulations contained a set list of medical conditions, and a claimant had to prove he or she had been diagnosed with one of those conditions. It is clear that having a set list creates a simpler, more predictable system. But there is more at stake than simplicity and predictability. Limiting approval to a list of known medical categories dictates a disabled worker’s right to benefits. For disability claimants diagnosed with Lyme disease, or any condition for which medical science has yet to reach a consensus, the list advocated for in “Unfit” will result in the claims of many severely ill people being routinely denied.
A dramatic illustration of why flexibility is important is seen in the HIV/AIDS crisis that dawned in the 1980s. By mid-decade, HIV/AIDS was understood to result from infection with a previously unknown pathogen. In a quirk of history, changes in the federal definition of “disabled” were being implemented at the same time. A diagnostic test for HIV became commercially available in 1985. HIV/AIDS did not become a listed condition for Social Security purposes until 1993, a full eight years later. During this stretch of time, the need to change the definition back to the format advocated for in “Unfit,” did not come about. The vocational rules that had become part of the definition of “disabled” were performing the function they had been designed to perform. The more flexible rules were allowing sick and suffering people who could no longer work get the financial support they had earned. The more flexible disability rules were acknowledging the changed medical realities without requiring Congress to legislate for a new disease. If we followed the advisements of “Unfit,” and allowed for disability benefits to be granted only when the applicant meets a set list of diagnostic codes, we would create a circumstance where sufferers of emerging ailments would find themselves barred from benefits.
What really troubles me about the implications of the “Unfit” report is that it presumes that what is known in the world of medicine is all there is to know, and all there will ever be to know. This flat-earth view supposes all pathogenic processes can be accurately and exhaustively set down into a ready-made list. Such a scheme fails to allow for evolving understanding; it fails to allow for the emergence of new data and new conditions. This I-know-all-I-need-to-know mentality runs counter to the experience of many Lyme patients. Like AIDS patients before them, Lyme patients have had to struggle against this tidy view of medical science. Typically, the struggle plays out unsuccessfully in the health insurance arena. When seeking coverage for Lyme treatment, most patients are told that Lyme is easily diagnosed, easily treatable, and that the debilitating symptoms they experience have no known treatment in medical orthodoxy. Social Security law provides one place where the real world experience of being a patient still has legal effect.
The current Social Security framework allows for the demonstration of how horrendously sick a person can become when infected with Lyme disease. I have represented claimants whose documented brain function is analogous to Alzheimer’s dysfunction in key areas of processing, recall, and decision-making. I have represented others whose fatigue levels are triggered at very low level of activity and biological processes can only be carried out via anaerobic respiration. I for one am proud to be able to advocate for the rights of disabled persons. I am particularly honored to be able to fight for Lyme patients’ access to disability benefits. If the thinking on display in “Unfit” were enshrined in the law, we would return to what history has already demonstrated is an outmoded and inaccurate view of what it means to be disabled. We would engage in a foolish attempt to legislate not just the meaning of a word, but to legislate how illness and disease emerge in the human environment. I am proud to play my role in the “Disability Industrial Complex,” if doing so means I can portray the very real, though definition-defying, effect this illness is having on the lives of the workers of this country.
Barbara Arnold practices Social Security disability law from her office in Berkeley, CA. She has testified about the challenges faced by Lyme patients to the San Francisco Board of Supervisors, has organized Lyme awareness events at East Bay Regional Parks, and is a past chair of the support group East Bay LEAPS. Her company website is www.barbaraarnoldlegal.com.