When the thought of attending university came to my mind and heart, my insides were screaming: YES! But once I got there, I realised that it is a completely different ballgame. Not only was I navigating the new and intimidating world of first year university, but I was doing this as a young woman with palliative care needs.
University is not as it seems in the movies, or what I had read in the books. It is completely different. There are thousands of people on campus. On the ‘Upper Campus’ at the University of Cape Town, there are almost 27,000 students. I walk between them – or drive if it is one of my ‘wheelchair days’ – switching and groveling my way to class within the fifteen-minute window period I have to get there. It is quite embarrassing coming late to a lecture and struggling to find a seat in between an average first year class of 500 students.
For me, starting university was a life-long dream. With my health deteriorating, in the back of my mind, I consistently thought: “Can I do it?” or “Will being in a wheelchair prevent me from making friends?” I am sure I am not the first to think these thoughts and I am sure I will not be the last either.
Ahead of each lecture, there is the content to revise to know the lecture, to reap the full benefit and ask questions on any topic on which I am unclear. There are no teachers or reminders coming out to say: “You have a project due or an exam coming up.”
Attendance in each lecture at university is highly important, unless you are unable to attend on medical grounds. Attendance counts towards final marks as well, and if you have poor attendance, you will not be able to write your exam at the end of the semester.
However, I have a condition that requires palliative care and it is often necessary for me to be in my wheelchair. Due to my disability and condition, there have been some instances where I have not been able to attend the lecture. This is where the Disability Unit at the university comes into full effect.
The disability unit enables students to continue their studies as best they can, but most importantly it is not about you accommodating them into your schedule but for them to accommodate YOU into theirs.
The disability unit is made up of a number of individuals such as a clinical psychologist, a disability coordinator, an administrative staff member who arranges the accessible disability bus so that travelling to and from campus is easy – he or she makes sure that I make it to my lectures on time.
They make absolutely sure that university life is made easy for me as a student with a disability. Most importantly there is a direct line of communication between the disability unit and all my lecturers or conveners; people who help make copies or scans for me as well as someone who would assist me to my next lecture venue and make sure it is wheelchair accessible.
Another side of my ‘dream team’ is my palliative care team. My palliative care team supports me in more ways than one can imagine. They ensure that I am medically fit, psychologically and spiritually supported and able to attend my lectures.
My specialists and physiotherapists ensure that my chronic pain is well managed and that I am doing my daily exercises accordingly to my weekly workout regimes.
But the star players have to be my family. Without the support of my mum and sister, my dream to attend university would not have been possible. Their endless support, understanding and the care they provide carries me through whether I am having a difficult episode or coping with my chronic pain which is debilitating.
There is not such a huge gap between normal able-bodied students and us, the disability students – always remember in disability there is ABILITY.
I honestly thought that when coming to university in a wheelchair the stigma surrounding wheelchair-bound students would affect me. It is completely the opposite. Students are extremely kind, they open doors for me, assist me if I need help sitting in lectures even if I don’t know them. That is the beauty of humanity. No one judges or questions me as to why I am in a wheelchair, they just befriend me as they would any other student.
I have quite a few challenges being in the wheelchair alone. I suffer from chronic pain and using the wheelchair to navigate around an enormous campus built on a mountain slope is not always the best. It is extremely hard as my body experiences all the pain as well as the shock from going over the bumps, rough surfaces and up or down ramps into a venue. I wear my braces such as both knee braces, my back brace and my shoulder brace.
I do take off days in between my five-day week. On those off days, I rest and work from home. I access my lecture slides and videos online and have my support team which consists of scribes for all my courses whom I have selected to send me notes so that enables be to be up-to-date and on my ‘A-game’.
The challenges I face have highlighted the ‘Compassionate Community in action’ that surrounds me and helps me to achieve my dream. The assistance provided by the Disability Unit and the friendliness shown by my fellow students enables me to complete my tasks and attend my lectures as a productive member of the university community. Their work brings compassion to my university life in “practical, specific ways through compassion-driven actions”, to quote the Charter for Compassion website.
My palliative care team ensures that I am as supported as possible to do this, and my family provides the background support that keeps me going when things are tough.
I am proud and confident that I will make it to the end to complete my degree, despite the challenges surrounding my complex medical condition. All my lecturers are aware of my condition and they are extremely supportive, offering a helping hand when I am in need of one in order to make my studies a huge success.