What people with Lyme can learn from the disability community
Working at a job while you have a chronic illness, such as Lyme disease, can be challenging. One way to approach these challenges is to think about Lyme disease from a disability perspective.
People with disabilities are a unique minority, a group that any of us can join at any time.
Unlike other minority communities, however, most of us are not raised with an understanding of what it means to be disabled, how to negotiate the societal implications of disability, or how to deal with prejudice when it occurs.
At the same time, the disability community is a vibrant, active (and activist) group that has achieved major civil rights victories such as the Americans with Disabilities Act and related legislation.
It has also developed a nuanced and thoughtful set of articles and books that reflect on and interpret the experience of disability. For example, disabled anthropologist Gerry Gold has written about the social context of long term disability, including his decisions about going on LT disability insurance, a choice many of us may face.
I first identified with the group as a graduate student in the 90s when my hands were so non-functional that I had trouble doing many basic things, and no one could tell me if/when I would improve. I soon learned, for example, to press the automated door-opening button at the front of my university building.
I will never forget the day that button failed me: A stranger became very angry on my behalf, opened the door, and went on to complain to the building manager. I was shocked, upset to think of myself in the terms he obviously did. I had an invisible impairment that, at the time, some people did not believe existed. (Echoes of the future!) Although I was high functioning, it had eliminated my ability to play the viola (a beloved hobby) and, from the perspective of a graduate student in computer science, seemed to make my career of choice next to impossible.
The concept of disability
Like many of us with Lyme disease, I knew little about what it means to be disabled. Learning more about the concept of disability helped me understand the limitations that Lyme disease brings with it. This allowed me to advocate for myself and to overcome the belief that my disease meant I could not be successful in my chosen field.
Over the decades since that door failed to open for me, I educated myself about disability theory and disability studies, taught courses about disability and technology, and conducted research in assistive technology.
We Lymies have a lot to learn from the disability community. Many of us are disabled, and the Lyme and Disability communities have much in common, including their accomplished activism.
So ask yourself “am I disabled?” Consider the implications — that you are not defined simply by your symptoms, that society may need to change its norms so it can benefit from all that you have to offer, that you are a person first and foremost.
For me, disability gives a me a name and a structure for a difficult situation and access to a society of peers and activists and thinkers.
If your answer is yes, and you work at a job, an important question to think about is what accommodations, if any, are appropriate to ask for, and how you might go about doing that.
First, it is important to know about the Americans with Disabilities Act (ADA), which protects people with disabilities from discrimination.
The ADA specifically prohibits discrimination by employers with 15 or more employees, public entities, public accommodations, telecommunications, and so on. It was passed in 1990 and has been progressively narrowed by the courts in terms of the situations to which it applied.
Thanks to an amendment in 2008, however, it was broadened again to ensure that it focused on discrimination across a wide range of disabilities. These included but were not limited to “contagious and noncontagious diseases and conditions such as the following: … muscular dystrophy, multiple sclerosis, cancer, heart disease….” All of these can impact health less severely than Lyme disease.
An important implication of the ADA is that employers must make “reasonable accommodations” for their disabled employees. According to the ADA website:
“Reasonable accommodation is any modification or adjustment to a job or the work environment that will enable a qualified applicant or employee with a disability to participate in the application process or to perform essential job functions. Reasonable accommodation also includes adjustments to assure that a qualified individual with a disability has rights and privileges in employment equal to those of employees without disabilities.”
The key factor here is to define essential job functions and the accommodations needed to achieve them without causing undue burden to the employer.
What does this mean for Lyme disease? To answer that question, I turned to the Job Accommodation Network (JAN), a nonprofit website that provides “free, expert, and confidential guidance on workplace accommodations and disability employment issues.”
JAN has a Lyme disease information page , which provides specific recommendations for accommodations such as a flexible work schedule, work at home options, periodic rest breaks, and reduced stress.
I also turned to resources for other fatigue-related, often invisible illnesses. For example, there is a wonderful article on how to manage lupus accommodations at work at www.lupus.org and JAN has a chronic fatigue article that includes several specific examples of situations and accommodations.
For me, working with Lyme disease has meant careful attention to time management, changes in my work practice to avoid big pushes around deadlines, a wonderfully flexible and supportive work environment, and sensitivity on my part to the impact of my needs on those around me along with their support of my rights.
My university is large, but any changes I request in my job will most directly affect myself and the people around me. And the person-to-person side of this is complicated by the invisible and uneven nature of my illness.
Jennifer Mankoff is a professor of computer science and engineering at the University of Washington. Her scholarly works include the development of assistive technology for people with disabilities, studies of the impact of conflicting information online people with Lyme disease, and a study of the severity of Lyme disease compared to other chronic conditions. She has had Lyme since 2006.
 For information on how this legislation affected disabled Americans during the 1990s, see The Disability Pendulum: The First Decade of the Americans with Disabilities Act, by Ruth Colker
 The Handbook of Disability Studies, edited by Gary L. Albrecht, Katherine D. Seelman, & Michael Bury, contains many essays on the shaping of the field of disability studies, the experience of disability, and the context of disability.
 Gold, G. The Social Context of Privately Sponsored Long Term Disability: Research in a Neglected Domain of Disabilities Studies. York U. Dept. of Anthropology.
 Pinder, R. Sick-but-fit or Fit-but-sick? Ambiguity and identity at the workplace. Chapter 8 (in ‘Exploring the Divide’ edited by Colin Barnes and Geof Mercer, 1996, Leeds: The Disability Press, pp. 135 – 156).
 Job Accommodation Network, Accommodation Ideas for Lyme Disease
 Watson, S. Work it out: Making your job accommodate you. Lupus Foundation of America
 Loy, Beth. Accommodation and Compliance Series: Employees with Chronic Fatigue Syndrome (CFS) Job Accommodation Network.
- February 28, 2018 at 6:56 am
Disabled? Why then am I being denied payment for and reimbursement for treatment by Medicare, Empire BC/BS, Emblem GHI, and an AARP/Met Life Long Term Health Policy??? Why was my nephew (who has suffered since 2007) told by the university he once attended, that TBDs are not a disability? This university sponsors a “Lyme Support Group” ! Why do we with TBDs have to pay out of pocket for our hospital bills and other medical bills? When I receive treatment (antibiotics for my infections or illness) I function as I did before TBDs for a time and a short time after. Then I cannot afford treatment. Once again I am MADE disabled. Isn’t the way people with TBDs being treated considered discrimination? Where is the uproar? Where is the media attention? Oh, we are disabled! Just asking! Just frustrated!
- March 3, 2018 at 5:45 pm
How are we susposed to get help for Lyme when no one around my towns knows how to treat it or co-diseases. Or they just treat for Lyme and call it good I have other things going on and need help.
- March 5, 2018 at 12:59 pm
Thanks Jen for writing this as sometimes I feel very alone in silent chronic illness land.
I know you and I both have continued to adapt our lives to be able to work since we had met at Starbucks by Whole Foods many years ago. I was teaching nursing at the time. I had hoped we could meet again and did not realize you were no longer at CMU. If you are in the Burgh sometime we should grab a coffee or lunch!
- March 5, 2018 at 5:13 pm
I was recently dismissed from a professional trainer position due to chronic “red-eye” (bloodshot eyes cause by Lyme Disease). After I informed the director of my department of my Lyme Disease he told me the company had lost an employee to the disease three years before I was hired. A week later I was let go after I had received commendations for my work and a current project I completed was published.
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