In 2024, one might expect workplaces to embrace inclusivity and offer support to individuals tackling a disability at work. Yet, the reality is often far more complex, as societal attitudes and misconceptions still create significant barriers. This article delves into the challenges faced by a dedicated lecturer who returned to work after a life-altering diagnosis, determined to continue doing the job she loves despite the obstacles.
Her personal story highlights not just the physical struggles of managing a disability at work but also the emotional toll of confronting preconceived notions about her abilities.
Returning to work after my diagnosis
Living with a disability is hard enough. Some days are so tough you cannot get out of bed, but other days, when you do feel well, you are deemed “a fraud” if you act anywhere near “the norm”.
However, I’ve found the hardest part of my journey has been phasing back into work, not because of the physicality of work but rather the background noise of people and their opinions on your capability.
As a healthy young woman, the concept of work never felt like a chore. I loved my job. I have the job I worked hard to get and I was living my best life. Of course, there were highs and lows, moments of stress and hard work, but nothing that really made me feel untoward working.
After I fell ill and received my diagnosis, I was devastated to think about how this would affect my career and, naturally, was worried about my future with a disability at work.
As a lecturer, my job can be physically and mentally demanding, and on those first darker days lying in bed, I couldn’t even conjure the energy to think about how I would cope with this.
However, this only drove me, and made me more determined to get back on my feet and back to the person I once was, albeit a little different.
I knew it would not be, and it has not been an easy journey. My health now can only be described as a rollercoaster, with ups and downs, peaks and troughs of good days, bad days, and the really ugly days. Some days, my body does not want to cooperate with the brain, making work impossible, but a few weeks ago, I was proud of how far I had come.
I had managed to phase back into work for eight weeks, working mostly afternoons and maintaining the capacity of 50% of the workload I used to manage. Teaching felt right again, and the students were wonderfully supportive. As were the staff and team I had behind me.
Challenging assumptions about disability and capability to work
However, the week before half term, an ugly day occurred where a horrible Seizure reared its ugly head and left me completely immobile down my right side, where my leg was locked in a position for so long that I ended up hospitalised.
But, it was not this that got me down. It was not the pain or the concern of the leg that played on my mind. It was the sheer disappointment that my body had let me down right at the end of the half term.
This was undoubtedly hindered by unsupportive, unwanted opinions of staff members, who took this situation to mean I was incapable of working and thus decided, without my consent, that I was not strong enough and was ‘doing too much’.
Of course, nobody voiced this to me, as I laid there post-seizure dazed and confused, but instead decided to share this opinion with other members of my ‘support team’.
This further hindered my position, whereby I was told that if I had another seizure or episode during my second part of the phased return, I would be “deemed unsuitable” to work full days, and therefore, my working hours and pay would be cut. Of course, hearing this news, I was devastated and somewhat shocked since I thought I had been managing well and simply had an acute, one-off situation over which I had no control. This came from other people’s assumptions and opinions of what I was capable of, and I was offered no opportunity to voice my own opinion on the matter.
I felt deflated and also unsupported. I was sick of those speaking for me and deciding how much I could do. I genuinely thought in 2024, the world would be more accommodating and accepting towards disabilities, but it seems not. I would completely understand if it was happening mid-class in front of my students and causing major issues in my work. However, this is not the case, and in eight weeks, I have only once had to leave and call my next of kin due to this unfortunate situation I cannot control.
The most frustrating thing is this is not an opinion I share. I am capable. I am able to do the job I know and love. I can work full days, and I can teach.
Yes, I have seizures. Yes, I have an illness that sometimes makes my days harder, and some days, I may need more time to do the things I used to do. However, I am still so early into my journey and living with my disability, and I now feel I am already being faced with an impossible situation, an ultimatum where I need to hide my new normal, hide or mask my seizures and ticks, incase others deem me ‘incapable’. This in itself is already causing me more anxiety and stress than the actual job itself, and I now feel that I need to find my own voice and fight for my own rights.
I know some of these opinions may be coming from a nice, caring place, and they may think they are doing the right thing, but I can assure you that this is not the case. Hindering my job, ending my career and leaving me sitting at home on my own is not what I want nor need for my health.
So, I urge anyone who thinks they are helping or being kind to just think for a second about the person and what they might want or think because, believe it or not, we are the same person we were before.
If you’ve faced similar challenges or have a story about navigating a disability at work, we’d love to hear from you. Sharing your experiences can help shed light on the realities of living with a disability and inspire change. Together, we can create a conversation that fosters understanding, inclusivity, and empowerment. Let us know in the comments box, on social media or contact us to share your personal story.