Consider a disabled person who is a paraplegic. Though they are unable to walk or run, they are usually able to breathe, eat, talk, and even train as athletes in the Special Olympics. In fact, paraplegic athletes often build incredible upper body strength!
Now consider a disabled person is has a respiratory ailment. Though they are unable to breathe well, climb stairs, or train as a runner in the Special Olympics, they can eat, talk, and walk without a wheelchair. Their disability may not even be obvious to the naked eye.
Then consider someone who has a disease that leaves them fatigued. Though they are unable to engage in exercise or athletics and have difficulty sustaining daily activities of self-care, they may be able to walk on their own, talk, eat, and take care of some life activities for brief periods.
Finally, consider someone who has a traumatic brain injury. People with traumatic brain injuries may be able to walk, but could suffer seizures, appear dazed and confused, or move in and out of consciousness or confused states. They may complain of sensory problems, such as sensitivity to light and sound as well as balance problems.
Of the 4 disabilities above, 3 would not be seen in a wheelchair. In fact, many people with disabilities report being verbally assaulted by the general public when they park in handicapped parking spaces and get out of their vehicle without a wheel chair. Due to the misnomer of disability, these well-meaning people have failed to consider that someone may be able to walk, but not to distant parking stalls due to respiratory problems or excessive fatigue.
In the process of seeking medical help and later applying for disability, claimants also face a similar challenge. Though being paraplegic may be an unquestionable disability, other disabled Americans are faced with exhaustive examinations to determine the legitimacy of their condition from medical and legal professionals. These examinations stem from the vantage point of preventing fraud, but frequently amount to harassing legitimate claimants to the point of exhaustion and detriment. Many report examiners in surveillance outside their homes to what them in the hopes of catching them functioning normally. But just because a claimant is able to take out the trash one day does not mean that the claimant is able to do it everyday. Fatigue, respiratory problems, and brain injury can wax and wane bringing good days and bad days both.
T. Phillips, a researcher in the Legal Studies Program, School of Social Sciences, La Trobe University, Bundoora, says “When the alleged injury is a contested environmental illness, the suspicion aroused and the scrutiny faced by workers is much more acute.” (Phillips, 2012)
In the study, Phillips examined the medico-legal experiences of eight Australian claimants with chemically sensitivity and uncovered three forms of surveillance (Phillips, 2012):
When the subject does not consistently adhere to stereotypes of illness under surveillance, they are considered undeserving. Thus, people who are legitimately disabled face having to appear sick at all times under the misnomer of outward disability. Phillips asserts that this leads to self-regulation and ‘repressive authenticity’ (Phillips, 2012).
In repressive authenticity, Phillips declares that individuals are forced to practice self-surveillance to ensure they conform to expectations of sick people, and as such, healing is discouraged. “The current system is therapeutically counterproductive and requires better management of surveillance and its effects.”
Navigating healthcare and legal issues is a complex endeavor. Indeed it is not uncommon to hear from chemically sensitive patients that doing so makes them more ill in the long run. Some even give up the fight after many years of struggle and worsening health to focus on taking care of their health. In doing so, their disability becomes far less limiting.
Yet as a society we believe that disability benefits are there for us when we need them. We think getting on disability should be relatively as simple as going to the doctor and getting a letter declaring the disability and delivering it to the disability benefits office. With the stress of finances relieved somewhat on disability, one would then be able to focus their time on improving their health.
Many people with chemical sensitivities report a strong desire to get back to their old lives, returning to the workforce, and their old social activities. Indeed, the hardest part of such a limiting disability is the drastic limitations it places on family life, social, life, religious activities, employment, and daily function.
Phillips view of the therapeutically counterproductive medico-legal system extends beyond Australia to a similar system here in the United States. There is a pressing need to reduce welfare and insurance costs in the United States. Yet the current system fosters claimant reliance on it though making it difficult to obtain and even more difficult to give up without suffering a financial gap in the process.
Indeed, if the system were restructured to simplify receipt of disability benefits where a claimant only need an attestation of their family physician, taxpayer’s dollars would be saved from hiring surveillance teams and social workers to review and monitor a claim over years. Immediately approving claimants would not be more costly as back benefits are paid years down the road when claims are finally approved anyway.
Restructuring benefits would, however, save much stress and worry on the claimants and get them off to improving their health right away. It would reduce secondary stress and anxiety disorders secondary to the claims process and give claimants a much better chance to improve their health. Then, the money that was spent on surveillance could be a savings to the taxpayer. Better yet, it could be used to increase and improve programs that help disabled people who are willing and able to return to the workforce to find a suitable work accommodation or business venture.
It’s the only thing that makes sense!
Phillips T. Repressive authenticity in the quest for legitimacy: surveillance and the contested illness lawsuit. Soc Sci Med. 2012 Nov;75(10):1762-8. doi: 10.1016/j.socscimed.2012.07.026. Epub 2012 Aug 5.
Wolf, Patrick. Settler Colonialism and the Transformation of anthropology: The Politics and Poetics of an Ethnographic Event. 1999. PhD Dissertation.
Lourdes Salvador is the founder of MCS America, a science writer, and a social advocate for the greater awareness of environmental contamination, human toxicology, and propagation of multiple chemical sensitivity (MCS) as a disorder of organic biological origin induced by toxic environmental insults.
For more information visit MCS America
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