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.
- March 29, 2013 at 9:59 am
Well, for those who think disability is so easy to get – my children and I ended up homeless, and denied healthcare. I was also put under investigation and bullied. Gestapo raid on my infectious disease doctor’s office, and the whole nine. If I was a male crackhead, I’m sure I would’ve gotten disability, no problem. I suffer from late stage Lyme Disease and Rocky Mountain Spotted Fever. There’s more infections, but I am unable to have anymore testing. I have been left to die by my federal, state, and county gov’ts. It’s bad enough that I heard “in your head” by over 70 different doctors in Pinellas County, Florida, for over 25 years, before finally being diagnosed in 2007, but, to add insult to injury, all my documentation was ignored in my staged disability hearings. I refuse to die quietly. Did I mention that my kids were born with Lyme, because of the years of neglect by the medical/insurance industrial complex? This could be any of you. Remember that. The Lyme crime is being exposed, as we speak, so maybe the next generation won’t have to suffer from this cover up, as generations before have. lymedisease.org / lymeinfo.net / whatislyme.com / lymepedia.org / actionlyme.org (original whistleblower on the fraud in testing and diagnoses – God Bless)https://www.facebook.com/worldwidelymeprotest?ref=ts&fref=ts
- March 30, 2013 at 3:49 pm
Oh Debbie-so sorry you have had a such a hard time and children with Lyme-I have had it 26yrs and so glad my children were all away at college or marriade when I got it. ‘They’deny the existance of this illness because they know it is caused by contaminated vaccinations and germ warfare testing. No better in UK-had positive tests from both US and German lab but doctors/IDS will not accept the result. Have to buy antibiotics. The research by Prof Donald Scott and Prof Garth Nicolson proves what ‘they’ have done. Brilliant men.
- March 31, 2013 at 9:45 am
For those suffering from Lyme, or any other infectious, autoimmune, psychological or spiritual part of the human condition, I recommend looking up Braco.net. Braco, from Croatia, is someone who gazes, and his gaze awakens an internal power to heal. He travels a lot in the US where one can experience him directly for $8 a session. He also has “straight to camera” on-line sessions broadcast on the internet coming up April 10-17 from Hawaii. These are only $3 per session. I continue to be surprised the degree to which I am experiencing positive effects. It seems that each person has a unique, usually dramatic experience, including those who are skeptical.
- March 31, 2013 at 4:25 pm
Thank you to Barbara Arnold for providing such a thoughtful critique of the NRP story on disability programs. I am an attorney for the SSA disability programs, and I was so disappointed in NPR’s short-sighted and misleading reporting. Thanks especially for providing historical context for the definition of disability that we have today–it provides much-needed counterpoint to NPR’s reporting.
- April 1, 2013 at 1:34 pm
Thank you, Adam. I’m so glad when other attorneys reach out. I’d love to chat and get to know your practice better. Feel free to contact me through email.
- April 2, 2013 at 3:04 am
Is it possible to get disability retro? I applied several years ago under various symptoms, just got a diagnosis of Lyme.
- April 5, 2013 at 2:15 pm
I agree completely – the piece was one-sided and not up to NPR’s normal balanced and even pro-humanitarian reporting. It sounded like something out of the right-wing doctor’s bag. It obviously had to do with money. I wonder if they will follow with a more balanced piece? Certainly this isn’t the only scandal regarding disability. Mainly it’s denial, not acceptance that’s the scandal needing investigation.
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