A decade ago, I was completing my master’s degree in environmental science and policy, and preparing to embark on a multi-decade career in advocacy and public policy that would have required not only long hours during the workweek, but frequent travel and overtime. Unfortunately, my body had other plans. Slowly my experiences began to erode my fantasies, until finally my vision of a flourishing full-time career evaporated entirely.

The slow toll of disability on work life and goals

This didn’t happen suddenly or all at once. Instead, I gradually and incrementally began to pull back from applying for high-energy full-time jobs. As an alternative, I started opting for part-time jobs while completing freelance work on the side to supplement my modest income. I was lucky: I did eventually find a decent-paying, part-time position in the environmental field, in a municipal government that allowed me a flexible schedule and some telecommuting opportunities. If I was too sick to work one day, I could come in the next day or make it up another week. Since I only had to be in the office two days a week, I didn’t have to struggle to schedule and make my necessary medical appointments, either. I held this part-time position for several years before budget cuts contributed to my layoff. Since then it’s been more of a struggle for me, as well-paid, part-time positions are something of a unicorn in the working world in the United States.

As I’ve mentioned in past posts, having a chronic illness is like its own job. It eats up hours and effort to attend medical appointments, fill prescriptions, follow up on referrals, and be your own advocate. This, coupled with the time and energy of dealing with symptoms and attending to our bodies, can compromise one’s ability to work. For some, it can limit the hours we can work or what conditions we can work under — if we can work at all.

Options and legal protections available

In the United States, the American Disabilities Act (ADA) makes it illegal to discriminate against potential or current workers due to disability. In order to be protected under the ADA, one must have a medical condition — either physical, mental, or intellectual — that limits a major life activity such as performing manual tasks, learning, or working. In particular, employers with 15 or more employees are required to provide “reasonable accommodations” to those employers that have a documented disability to enable them to carry out the essential functions of their position. As long as those accommodations don’t cause the employer a significant hardship or expense to meet, they must attempt to meet their employee’s requests under the ADA.

In the past, accommodations I requested under the ADA and was granted were the ability to sometimes from work from home or switch working days as needed, turning off overhead fluorescent lights above my desk, and taking frequent stretching breaks and snacking on salty foods (I have very low blood pressure) throughout the work day. I had a fellow employee request and receive an ergonomic seat and keyboard setup for her work desk, while I recently had a friend request a stand-up desk at her office due to disc issues in her lumbar spine.

Here’s what you can do

If you have an amicable relationship with your supervisor, you can approach them first with such reasonable accommodation requests. However, at other times it may be more appropriate to submit your requests directly through the human resources office. Some employers may have onsite employee assistance programs (EAPs). An EAP is a program designed to assist businesses and organizations in addressing productivity issues by helping employees identify and resolve personal concerns that affect their job performance — including working with a disability.

For those employers that don’t have their own EAP, they can contact the U.S. Department of Labor’s Office of Disability Employment Policy, which offers resources — including best practices and innovative strategies — that support hiring and retaining employees with disabilities. Every state also has their own version of a rehabilitation commission that offers vocational rehabilitation (VR) services free of charge to those who apply and are eligible. Specifically, state VR agencies assist people with disabilities in locating and maintaining employment, including negotiating reasonable accommodations with a prospective employer.

Finally, for those who are concerned about working jobs that may not offer health insurance, many states enable Medicaid buy-in programs or opt-in programs for those who are disabled. For instance, in Massachusetts there is there is a program through MassHealth (the state’s Medicaid) called CommonHealth that people with disabilities can qualify for as long as they are working, as eligibility is not income-based (though income is used to determine the monthly premium).

The bottom line

If you are having an issue finding or keeping work — whether full-time or part-time — due to your disability, please contact your state government’s rehabilitation commission, or search online for disability advocacy groups near you for help. Because those of us with chronic illness should be able to apply our skills, experience, and training in the workplace and earn a decent living.

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