I have spent the past two weeks exploring what it means to work with Lyme disease from a new perspective. I’ve blogged before about why I think it’s valuable to view Lyme disease through the lense of disability. I’ve also blogged extensively about work and Lyme disease. However, I’ve never really put the two together. An important question, for those of us who work with Lyme disease is what accommodations, if any, are appropriate to ask for, and how one 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 progressively narrowed by the courts in terms of the situations to which it applied. Thanks to an amendment in 2008 it was broadened again to ensure that it focused on discrimination across a wide range of disabilities. Because of that change, Lyme disease is now covered by the ADA.
An important implication of the ADA is that employers need to make “reasonable accommodations” for their disabled employees. This specifically means (from the official 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.
But what does this mean for Lyme disease? To answer that question, I turned to the Job Accommodation Network (JAN), a nonprofit site that provides “free, expert, and confidential guidance on workplace accommodations and disability employment issues.” JAN has a Lyme disease information page, where they provide specific recommendations for accommodations such as a flexible work schedule, work at home options, periodic rest breaks, and reduced stress. There is also a great deal of useful ADA information on Anapsid’s site including a very practical list of ADA-related government organizations, what sort of help they might provide, and where to contact them.
I also turned to resources for other fatigue-related, often invisible illnesses. For example, there is a wonderful article on how several people successfully managed Lupus accommodations at www.lupus.org and JAN has a Chronic Fatigue article that includes several specific examples of situations and accommodations.
The question remains, then — what accommodations, if any are reasonable for me. However, in my job, the question is only partly what accommodations one should ask for. It seems to be equally about who pays for the accommodation. Within the university hierarchy, that could be the university, the department, or the faculty member him or herself — all three have “work” funds that they raise in various ways. The fund raising burden is highest for the smallest unit (the faculty member), but a faculty member has a great deal of freedom in deciding what accommodations to pay for if paying him or herself. In any case, it’s not clear that payment responsibility is specifically covered by the ADA, and I have been able to find nothing written about the topic so far.
That aside, the job I’m in is luckily very flexible. The thing that is least flexible is teaching, and the question of what support is appropriate or necessary for teaching is something I’ve been thinking a lot about. The other thing that is true of my job is that there are sometimes large spikes in work load (for a few weeks due to a conference deadline, for a whole semester given a very difficult teaching assignment, etc.). It seems to me that managing (or limiting) spikes in my workload load is something that would make things much easier. Another aspect of my illness that can be difficult is managing low energy points. If I limit my work to my normal capacity when feeling unwell, then I can provide steady but lower effort to my university. If I work to my normal capacity when feeling well, then I accomplish more but the weeks when I am feeling unwell become very difficult. The accommodations needed in either case shift as well — an overall lower workload vs a support structure that can fill in the gaps in the difficult weeks.
A last observation about this process: It may seem clean cut when I describe this in terms of the moral/legal world (human rights), but in reality the process is complex and messy just as any interpersonal negotiation may be, especially in an organization the size of my department. 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.