Since becoming chronically ill Lauren has fought to be understood. In this piece, she speaks about her experiences in the workplace and desires to take control of the decisions which impact her future.
My heart sinks. I know exactly what my boss is about to say before the words have even left his lips.
“…that it would be a good idea for you to just focus on your health right now.”
I choke back tears. Although I knew that this was probably imminent, it still comes as a shock.
“We just want what’s best for you.” He says, avoiding eye contact as I shrink into my chair.
Once again, I have no say. A decision about my life has been made for me, not by me.
Since becoming chronically ill several years ago, this is a conversation that I have had far too many times. While I know my limits and am more than capable of making decisions for myself, people don’t always give me the benefit of presuming my competence. In my experience, people in positions of power often use my health or disability against me. Even if I am more than capable of performing a role, they use my health status as an excuse to take opportunities away from me, or not give me a chance in the first place.
These people claim to “just want what’s best” for me, but despite these intentions, they often get it wrong.
New Zealand law is supposed to protect all people from unlawful discrimination in the workplace, but disabled people experience discrimination in the workplace far too frequently. Disability still has a stigma, non-disabled people still expect less from our community, and so that means that we are often left out of the picture, without much thought or public outcry.
Once an employer told me that despite being the best candidate for the job, I wasn’t hired due to the fact I had a nasal feeding tube. They were worried that this would “ruin their image.” I was made to feel like my success in the workplace was contingent on my ability to minimise my disability. This brought with it a whole load of questions and worries for subsequent job interviews;
Do I mention my disability in the cover letter? Or wait until the interview to drop that bombshell, potentially then standing out from the crowd for all the wrong reasons? Do I even disclose it at all? It’s within my rights not to, but my disability is part of my identity, something I am proud of, why should I be made to feel like it’s something to hide?
In my experience, employers end up either unintentionally, or even intentionally discriminating against and denying disabled workers equity and opportunity because they are afraid of what these differences could mean. Employers rely on stereotypes of disability and make assumptions, rather than trusting that I, as a disabled individual, know my body and my limits.
I was once pressured into resigning from a job that I loved and was very good at, too – because of an extended hospital stay. To make matters worse, the minute I resigned, neither my employer nor colleagues, ever spoke to or visited me in the hospital again. Even in my casual role as a babysitter, I quickly began to lose clients once they found out I was ‘sick,’ despite me still being more than capable of working for them 90% of the time. The unpredictability of chronic illness can make being a reliable employee hard because my ability to work yesterday, doesn’t mean I will be able to work tomorrow.
While this reality may not lend itself to a 9-5 job, the concept of an 8-hour workday is arguably a farce anyway. The 4-day-work week states that “the average American works 8.8 hours every day. Yet a UK study of nearly 2,000 full-time office workers found that the average time spent working is two hours and 53 minutes each day,” spending the rest of the day on social media, taking smoke breaks and making personal calls.
Other disabled people and I are spending so much time trying to uphold a normative structure of what “working” means, thinking that we are problematic for not “fitting in” – but we aren’t the problem at all. The structure is, flexibility, empathy, inclusion – if these were central values, we would build universally better workplaces where the many talents disabled people offer are unleashed, rather than disregarded and ignored.
Right now, gaining full-time employment after I graduate seems like an impossible feat. However, I have some hope because of COVID-19. I have been denied remote working provisions for so long, it’s been hard to watch it suddenly become available to the masses, but I am optimistic that these practices will continue. One day the structure of “work” will be innovated, so I don’t have to spend time fitting into a box to get the same chance most non-disabled people do.