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Finding Accommodating Employment When Chronically Ill

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Finding employment with a disability is a struggle to say the least — no matter how reputable your academic credentials are or how robust your resume may be. Nevertheless, I believed that by continuing my education, I would advance my career in an effort to satisfy not only my professional goals, but society’s expectations of a respectable profession. This past May I graduated with a Master’s degree in social work with a concentration in health from one of the most recognized programs in the nation. Pursuing this degree was a risky endeavor (physically and financially), yet I felt that the benefits significantly outweighed the costs in the long run.

While I am forever grateful for the degree I earned and privilege to attend an institution that furthered my knowledge, skill, and expertise, I seemed to have trusted in a system that has failed me again.  Let me explain —

According to the U.S. Department of Labor, people with disabilities are less likely to have completed a Bachelor’s degree and higher than those who do not have a disability. Furthermore, the U.S. Bureau of Labor Statistics stated that the unemployment rate in 2017 for people with a disability was 9.2 percent, more than double of those who do not have a disability. These reports frustrate me for a multitude of reasons, but let me try to dissect why this is problematic and concerning.

First, I believe one of the main reasons those with disabilities are less likely to have completed a higher education is due to the inaccessibility of education for this specific population.  Middle school and high school presented me with so many challenges physically, thus inclining many to hypothesize that my chronic illness was going to create too many hurdles for me to be successful.  “How is she going to physically get around campus?”  “How is she going to keep up with her classes?”  “How will she be able to afford college when she can’t work?” “How will she be able to maintain her health if she goes away to college and her care team is at home?”

Yes, these are all valid questions, but it troubles me that these reservations were considered potential deal-breakers for following my dreams.  I know there are people with disabilities who see these questions as realistic considerations and I would agree; but if these are issues most people with disabilities are facing, why should all responsibility be put on us to accommodate these needs?  I call attention to this because I know there are many individuals like me who have a disability, have a passion for learning, and are extremely hesitant to pursue a degree simply because the standard of accessibility in education has fallen too short. Policy makers within the education and healthcare sectors must come together, listen to the needs and personal testimonies of those with disabilities, and collaborate to create equitable opportunities for learning.

In spite of my disease, I decided to pursue a higher education.  I am not going to explore the politics of disability accommodations within education at this time only because I feel many of the issues I am about to discuss regarding accommodations in the workforce are applicable. What I want to analyze is a very specific problem that I think many individuals like me are facing.  Put aside the diversity within the statistics I mentioned earlier, as I am speaking only to a particular category of people aka people who have earned an education who have a disability and are below the age of 65 and want/need to work.

As someone who has the desire and will to work, has the personal and professional leverage that distinguishes my aptitude and work ethic, and has the credentials and qualifications to do so, why is it so difficult to find an employer that will provide me with the flexibility I need to care for my chronic illness?

The problem is not “people with disabilities can’t work;” it is the societal norms of the employment industry and the rigidity of employer policies that ultimately sever the value brought forth by those with disabilities, disabling them from the workforce.  (Please note I am not referencing those who have a disability who are unable to work as a result of their health difficulties.  This is valid, justifiable and should always be respected.)

I go back and forth, questioning, “Am I asking too much?”  “Am I being unreasonable?”  Then I quickly remind myself that I have put myself out there, pushed my physical limits and conformed to a social norm I can’t always satisfy. When I do, I find myself sick and completely unavailable to fulfill the responsibilities demanded of me. That is in no way sustainable.

Part of my decision to go back to graduate school was because I thought it would propel me into a leadership position that would provide me with autonomy, flexibility, and authority over balancing my professional role with my health and well-being. I believe this will happen, I just hope it’ll be sooner rather than later.  But right now, I am a highly educated individual with a boatload of personal experience, still forcing myself to adapt to an able-bodied world. The problem is not me; I have to keep retelling myself this daily as I still struggle to find employment that will accommodate my needs.

Can financial stability and stable health coexist? Am I going to ultimately have to sacrifice one for another? I refuse to surrender to this standard and am determined to find that both can exist in harmony.

Bottom line: There are people who have a disability and want to work and need to work in order to be independent human beings.  However, many times they are neglected or disregarded because they are quickly regarded as “unaccountable” or “unreliable” as a result of their disability.

My illness is unpredictable; it waxes and wanes from hour to hour which automatically marks me someone you cannot count on.  The truth is, yes; there will be days when I cannot be physically present at a moment’s notice. There will be times I may have to work from home. There will be, most likely every day, a time in which I need to nap; there will be times when the fatigue is just too crushing and I cannot push through.  But this is the reality I face; this is life with chronic illness, and I have promised myself I will not sacrifice my health in order to abide to the conventional and outdated customs of the workforce.

I am confident in the value people with disabilities in the workforce bring to the table. People with disabilities have the perseverance and determination to conquer anything. We are innovative thinkers, and invite others to see things from a different perspective.  We are considerate, nonjudgmental, and take pride in our ability to transform our weaknesses into strengths. We are hard workers; we fight for our lives every single day, and can apply this work ethic in a professional capacity.

Therefore, “people with disabilities cannot work” is a blanket statement and a scapegoat for discrimination and stereotyping. Many of us can work, and want to work. As a society, we must see beyond the limitations disabilities present, and cultivate spaces that allow us to embrace our skills and strengths, allowing us to be who we are, and not our disabilities.

Getty image by Milos Spasic.

Originally published: November 12, 2018
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