Personal Experiences

Bringing Visibility to the Invisible

My Experiences in STEM with an Invisible Disability

Writer: Ilina Moitra

I am currently an undergraduate neuroscience student at UCL with an invisible disability (Ehler Danlos Syndrome), and I work on research in neurodegeneration. 

Growing up, I wanted to be an ethologist and a veterinary surgeon, but upon the onset of my chronic condition, I quickly realised that would be rather impractical. Thankfully, at that point, my interest took a natural turn and I began to explore research in life sciences. The prospect of finding solutions to wide-ranging problems by tweaking an error in a genetic code, or the idea that a 1400 gram organ governs our entire sentience, intrigued me.

In my later years of high school, I was discouraged from pursuing a STEM-based degree, especially one in life sciences, as my teachers believed that my disability and its requirements would get in the way of the scientific process, especially in the arena of wet lab research. However, I have been extremely lucky to have received support and mentorship from a young age through supervisors and mentors at various laboratories in India and the UK. I have been able to create workarounds, have received adjustments and have never been denied an opportunity due to my disability.

What has been challenging whilst in school and university is establishing the validity of my disability to both colleagues and staff. Access has also presented hurdles, excluding me from academic and extracurricular activities, including social gatherings. My hope for the future would be to normalise and increase awareness regarding invisible illnesses and I aim to partake in the process of improving accessibility and making disabled people more aware of their rights. 

Nystagmus and recognition

Author: Altay Shaw

Though it is plain to see that I have a form of disability, few people actually realise how much it impacts on my life. I thought my disability would hamper my application to university; I even thought about changing career paths due to a lack of individuals like me in the selection process.  

Getting nystagmus recognised by doctors was straightforward, but trying to get it acknowledged at university has been very difficult. Staff members have constantly overlooked it and have denied me any chance of assistance in a lab, asking how I am meant to work in the future if I cannot see what is in front of me. It discourages me from talking up, yet I am seen as an individual who must answer if the rest of my group falls silent. 

Before university, my condition was not a hindrance, nor was it an issue when talking to friends. Yet, now it defines me and it makes me uncomfortable and ashamed to be on my course. I hope that next year, when I intercalate in another subject, I will have a fresh start and a smoother ride.

Universities do have the equipment needed to support their students. When you know the kind of support you require, whether it be text-to-speech programmes or screen enlargement software, changes can be made immediately. The issue is not the technology but the lack of reaching out to students. With the mountain of lectures, assignments and extracurricular activities, it is hard for students to get acknowledged as their concerns are submerged beneath events and deadlines. So, staff taking the initiative to reach out would go a long way to forming a good rapport. 

Greater education on unfamiliar conditions would also be great. Though I do not expect everyone to be an expert on neuroscience or ophthalmology, it would be useful to not have to explain my condition every time I ask for reasonable adjustments. When changes have been implemented for exams, they should also be implemented for small group work and lectures. These changes are not hard and only take a small modification in PDF programmes to make the difference. 

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