A story from my life about why disability representation matters

I graduated from college in 2010. Fortunately for me, I was able to secure a job before I had even finished school. In August of that year, after finishing my final exams, submitting my dissertation, and passing a background check, I began a full-time job. I’ve been working ever since, for about 13 years.

Over the years, I’ve had five jobs across three different organizations. During this time, I’ve had many managers, most of whom were amazing.

Recently, I got a new manager, who like me, has a disability. This is the first time I’ve had a manager with a long-term condition. The experience has shown me why disability representation is so important. In my experience, it’s been hard for others to really understand what sickle cell disease entails, so it’s challenging for me to receive adequate support.

I’ve previously written about how supportive those in my workplace have been as I navigate adulthood as a sickle cell patient and seek to build a successful career. I say that to highlight that I did not previously feel discriminated against in the workplace. But admittedly, I have been struggling, and I knew there were areas where I had to give more of myself to achieve an outcome that was easier for my able-bodied colleagues to do.

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A refreshing conversation

During my first meeting with the new manager, they asked about my condition, including how it affects my work, and what strengths and limitations I have. (Note: I live in the U.K., and rules regarding workplace health discussions, disclosure, and accommodations may vary by country.) Amazingly, they asked me to think about my entire workday, rather than just my output. This was key, because there were many hurdles I had faced that I had never spoken about before. I had simply accepted things as they were.

The manager also asked about fluctuations in my health, such as any patterns I might have noticed that weren’t necessarily caused by work, but which could be exacerbated by work. The first thing that came to mind was how the seasons affect my pain, and subsequently, my mobility. I raised other points, too.

Finally, my manager asked me about the medications I take, the frequency with which I take them, and any side effects they may cause. Again, no one had asked me that before. The conversation was interesting, because we discovered that we both take medications. That meant that this person knew exactly how negative side effects felt and how they affect me.

Lastly, the manager was able to advise me on supportive initiatives that are in place for disabled people, which I was unaware of.

I won’t go into all of the specific details, but the conversation led to positive outcomes for me that I hope will pay off over time in terms of well-being. I am also hopeful that my productivity and effectiveness at work will improve.

If you are managing a staff member with a disability, I would encourage you to research potential assistance that may be available to disabled workers and consider ways to help remove some of the hurdles in their working life.

Also, think about the broader questions that aren’t solely focused on the day-to-day delivery of work. You may be surprised to hear about other important factors, such as the commute, working hours, the outlay of the office, or other issues. Many of us want to be successful in our careers, but not at the expense of our health.

Remember though, it’s not about questioning one’s capability, it’s about finding ways to provide adequate support to empower disabled staff to be as effective in the workplace as they can be. It’s about respecting boundaries and fostering independence. And it’s about ensuring that work isn’t the cause of poor well-being.

Note: Sickle Cell Disease News is strictly a news and information website about the disease. It does not provide medical advice, diagnosis, or treatment. This content is not intended to be a substitute for professional medical advice, diagnosis, or treatment. Always seek the advice of your physician or other qualified health provider with any questions you may have regarding a medical condition. Never disregard professional medical advice or delay in seeking it because of something you have read on this website. The opinions expressed in this column are not those of Sickle Cell Disease News or its parent company, Bionews, and are intended to spark discussion about issues pertaining to sickle cell disease.