My lived experience with disability– and why I am no longer embarrassed by it
- theearthyouthproject
- Sep 4, 2020
- 4 min read
Meet Leanne-Sydonie, a 21-year-old Law student from the Shetland Islands living in Dundee, Scotland. She shares with us her story, opening up about her lived experience with disability. She enjoys writing and filmmaking in her spare time, and shares her struggles with disability in the hopes of inspiring, educating and helping others. Her story features her journey of embracing her disability and outlook on disability representation in our Society and in the professional field. This story is related to Sustainable Development Goal (SDG) number 3, Health and Wellbeing.
Some of my earliest memories involve my physiotherapy for my disability, but I’ve only recently wanted to talk about what I deal with on a daily basis. In the past year, on top of Ehlers-Danlos Syndrome, a complex connective tissue disorder that I was born with, which affects the collagen in all of the tissues that make up my body- from my joints to my eyes; I was diagnosed with Crohn’s Disease, a painful autoimmune disease. I was also diagnosed with Gastroparesis- which literally means ‘stomach paralysis’.
Any food or drink I eat will sit in my stomach for so long that I’ll be sick, or it’ll be so painful that I can’t get on with anything for the rest of the day. I now live with a feeding tube, my stomach is pretty useless due to the Gastroparesis, and my intestines aren’t so great either thanks to a combination of all of my conditions! My main symptoms are chronic migraine, fatigue, pain, and muscle and joint stiffness, alongside abdominal pain, irregular bowel movements (either running to the toilet thirty times a day or not at all in a month!) and vomiting, but I also undergo regular heart and eye monitoring to check if there is any damage to those in particular due to how fragile those specific organs are.
"Like many young people living with disability, I was incredibly embarrassed by my disability aids in high school... when I had to take time out of school for hospital appointments, I didn’t tell my friends where I had been for weeks on end."
Like many young people living with disability, I was incredibly embarrassed by my disability aids in high school- I wouldn’t want to use my writing slope in front of others, or I would feel like people would stare when I would be using my joint braces. When I had to take time out of school for hospital appointments and admissions, such as my intensive muscle building rehabilitation program, I didn’t tell my friends where I had been for weeks on end. Now I have a tube taped to my face 24/7. I cannot escape the people who stare at my feeding tube, and unfortunately, they do stare.
Disability awareness is crucial. Thankfully, I am no longer embarrassed by my disability aids: I have nothing to be embarrassed about- my disability aids are there to help me live my life well. Without my feeding tube I wouldn’t be able to live a life, period. When I didn’t rely on a visible feeding tube, each of my conditions and the symptoms they cause are invisible: you cannot visualise the pain, the nausea, or the migraine until it reaches the stage of being bedridden. Thus, if I were to tell you that I am a Law student at university, balancing a part-time job with my studies and my illness, you would probably imagine that I am extremely functional. This assumption would be wildly incorrect: I spend a lot of time resting, watching TV, and often grappling with the feeling that I do not belong on my course. (Only 3% of lawyers in England and Wales identify as having a disability according to the Solicitors Regulation Authority!)
"Disability awareness is crucial... [and] to be aware of our own needs is just as important. I have goals and dreams that I am not dropping just because I’m ill, and in fact, by stepping back, more doors have opened for me allowing me to follow my goals even further.
In fact, after my diagnosis with Gastroparesis, I had no choice but to take this academic year as medical leave. A long hospital stay meant I would be choosing between my health or my grades. My university grades have been affected by my health previously, but as I am in my third year, these grades ‘matter’; and I had to choose between the non-stop ‘grind’ to catch up, neglecting my health, or to prioritise my health, neglecting my grades. I chose the second. And, coincidently, with the outbreak of COVID-19 bringing the world to chaos, what a time to do so.
Disability awareness among the general public is crucial, but to be aware of our own needs is just as important. I have goals and dreams that I am not dropping just because I’m ill, and in fact, by stepping back, more doors have opened for me allowing me to follow my goals even further. In a world that was not built for us, we often have to shape the accessibility we need for ourselves, and that includes taking our time if necessary.
Before I undertook my medical leave, I was so pleased to have been elected as disability representative at my university, and this is a role I would love to take on again in the future! Over lockdown, I’ve been really pleased to have helped with Scottish charities on their provision of services for young people with long-term health conditions, and to have raised awareness of my own experiences on Instagram. I hope to see more representation of disability and tube feeding in the media in the future, as well as at the top level of professional careers.
Leanne-Sydonie writes about her lived experience with disability and accessibility at www.leannesydonie.blogspot.com
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