At college with an invisible disability
Student Pastoral and Wellness Team Disability Rep ordinand Sasha Braun shares her experience of living and studying at college with an invisible disability.
Arriving at college for Welcome Week in 2017, I walked into the dining room to hear a sea of people. Blurred faces and sounds of greeting were what I remember hitting me first, the overwhelming noise, as I stepped through the doors. What people did not know about me, was that I couldn’t see their faces out of one eye and my peripheral vision was gone completely. Were they smiling at me and I was ignoring them? Were they inviting me over to their conversation and I couldn’t see? How was I going to navigate getting a cup of tea when I couldn’t work out how to get there and push through everyone without knocking hot drinks flying?
Just eight weeks earlier I had been admitted to hospital following several weeks of my eyesight in my left eye deteriorating until my vision was no more. That was when I first heard the words ‘multiple sclerosis’. The doctors thought this was the first sign of me having developed MS, and I thought that it was a laughable suggestion. Except, eight months and another relapse later, I would find out that they were, in fact, right. I was about to move to college and start training for ordination—how on earth was I going to process that I might have a disability, that is completely invisible to everyone? I only knew one other person at college, and everyone else was strangers. What about the challenge itself of starting college and all that college makes you process before I even considered the challenges of living and studying with a disability? But I’m in my 20s, that’s too young to be disabled, isn’t it? These were just a few of the questions that I kept asking myself.
So what support have I experienced at college? When I arrived at college, I started to share my story with a few trusted friends that I had made and I soon discovered the overwhelming love and support of the community. Fatigue is one of my biggest symptoms, which results in overwhelming tiredness that makes simple tasks of cooking a meal a challenge. With the support of friends and the chaplain, I had a meal rota set up for me for one night a week, allowing me a cooking free night to rest. Discussions with the academic dean resulted in support being put in place for me to obtain extensions for all of my assignments. I am unable, mostly, to do assignments in term time due to the full-on nature of the college timetable soaking up all my energy. Therefore, half terms and holidays are the time in which I do my assignments. Yes, there is a relentlessness to it, but it allows me to still complete all the work that needs to get done. The ‘Disabled Students’ Allowance’ is a government fund used to purchase ergonomic equipment, software, and 1:1 learning support sessions for students with disabilities. I was fortunate to be able to qualify for it and now have lots of different software that helps me study, learn, reads pre-reading for me, and supports my body whilst I study. The property and facilities team at Trinity sought to put into place adjustments around the college to help me access the building more easily, and I live in a satellite house where it is quieter to help me rest and regain energy. My pastoral group tutor was excellent in helping me process the information that I had a disability and helped me to communicate my needs to college. The challenge was that I was learning about this condition and how to manage it at the same time as the college was seeking to support me and try to understand it. We were all working out how to make sense of it all.
The principal at the time used to meet with me most Friday lunchtimes to check in with me as in my first and second year at college I had chemotherapy as a treatment for MS. This hasn’t cured it but has kept me relapse-free since I had it. As you can imagine, having chemo whilst being at college is quite a challenge. When I was having chemo, a prayer rota was set up so that for each hour of treatment, someone was praying for me. I cannot express the significance of sitting in the hospital, attached to an IV which is giving you chemo, safe in the knowledge that in five minutes, a friend will be praying for me.
I would be lying if I said that my time at college with MS has been smooth sailing. My first year at college was anything but. However, with the support put in place that I mentioned above and as I learnt to adapt and cope with the realities of having an invisible disability, my time at college has been a joy. It has allowed me to educate people on invisible disabilities, challenge stereotypes and use my experiences to be the college’s student disability rep. I have been able to explore disability theology, and I am part of a disability theology group for Bristol Diocese which seeks to explore disability theology and how we can teach others on this subject. My diagnosis has allowed me to work out what is important in life for me and to seek God’s guidance constantly. And finally, it has shown me the benefit of being vulnerable and just how ready people are at college to love and support you and to show you Jesus through their actions. I have never experienced God more closely than in the challenge of navigating this disability, of living in community, and in experiencing the frustrations and joys of being in my 20s and being disabled.
Here are a few top tips I’ve learnt along the way for any students who have invisible disabilities and who are either at college or thinking of joining:
- Let the college know if you have a disability; they will seek to support you and not judge you.
- Work with the college to create an academic pathway that works for you. I’m doing the BA over four years.
- Chat to your tutor, chaplains, and pastoral reps. Don’t struggle alone!
- Apply for the Disabled Students’ Allowance as soon as possible and in conversation with Mel Lucas.
- Build up a support network of people who on bad days are ready to step in practically and help you.
- Talk with your church supervisor about how they can help you during your placement.
- Work smart. Work out strategies for increasing your productivity when you are able to work.
- Don’t be afraid to challenge stereotypes and educate your colleagues. They will be thankful as most people are afraid to offend in conversations of disability, so raising it first will help.
- Know that you’re not alone and that God has called you, and that you are a gift to the church.
- Finally, the most important one, prioritize your health.
Posted October 2020