The Accessibility Office and the Red Blood Cell Disorders: Reflections from an Accessibility Counsellor living with Thalassemia
Many years ago, as a young-hearted 25-year-old, after graduating with my Masters of Counseling Psychology, my ambition was to work in counseling centers with students in universities and colleges. Years later, my 15 years of experience in working with students in several post-secondary institutions gave me a deeper perspective as a counselor. Earlier in life, I knew that I had a genetic condition, Thalassemia Intermedia. However, it was decades later that I would become transfusion dependent and come to understand my rare disorder’s impacts. My own condition continues to shape my counseling practice.
The Diversity of Students at the Accessibility Office
As a post-secondary accessibility counsellor, I had seen thousands of students in career and accessibility centers. Many of the students I saw came in with various documentation for disabilities. Students had many questions! What did our office do? What were accommodations? How does one access accommodations? How would students benefit? And, so much more. There were students with ‘invisible’ and ‘visible’ disabilities as well as chronic, short-term, and long-term conditions. Some disabilities and conditions were permanent while others were temporary. Students felt a range of valid emotions – from uncertainty, nervousness, to relief.
It’s Never too Late to Access Support
Students may choose to access supports at any time during their post-secondary journey. Some students came to the Accessibility Centre before starting their first year – some on their own and others with parents. Other students came during their first year or upper years. And then, there were those who came in their final year.
Some students were anxious. Some knew exactly what they needed. Some were curious (they had heard about our office). Some were encouraged to come to the Accessibility Centre at their professors’ suggestion.
Growth, Learning, and Self Advocacy
One common thing I heard was students’ appreciation in learning how much support was available to them. Students wished that they had known earlier on about the Accessibility Centre’s services and access to accommodations. Students saw how much better they could perform with our support. There were students who graduated who wondered how things would be after they left this supportive environment. Their time in post-secondary came with many challenges and questions, with growth and learning, and taking steps to understand how to advocate. It was wonderful to witness students I worked with develop the skills and confidence to be successful in their post-secondary studies – all the way from first year to graduation.
It made me wonder years later, with a diagnosis of Thalassemia, how had I not known about the Accessibility Services as a student? I often experienced symptoms that I ‘brushed’ aside in both undergrad and grad school. Juggling school, work, volunteering, and my personal life was even more challenging for me with Thalassemia.
I couldn’t pull all-nighters and just had to learn to cope in different ways through my academic years. I know many people can relate to the additional challenges of managing post-secondary with Thalassemia or Sickle Cell Disease. We find a way – however that is – to do what we need to get done. It isn’t easy. We push through when we may not know if we can – even when our energy is limited and we have symptoms. We become resilient and determined to achieve. This is our strength.
We turn to our supportive family and peers, ask for help from our professors, health care teams, and find services that can offer us help. Although informal support and coping strategies can help us get through, there is formal help available through the accessibility office. It is with this hope, that I write this, to encourage and bring awareness about one of these services on every campus, which is there to support students: Accessibility Services.
Learn More
Check out the Transition Resource Guide for Students with Disabilities
Read James Bradley and colleagues study on the Transitions to Post-Secondary Education Experiences of Young Adults with Sickle Cell Disease and Thalassemia!
Watch the Sickle Cell Awareness Group of Ontario’s webinar, Achieving Success in Post-Secondary Education Webinar
Check out Michelle Chieco and colleagues’ School Toolkit for People with Transfusion-Dependent Thalassemia
Check out the University of Toronto’s Demystifying Academic Accommodations
About the Authors
Kathy Raufi graduated with a Masters in Counselling Psychology. She is a Registered Psychotherapist and a Canadian Certified Counsellor. She enjoys time with her family, the outdoors, gardening, and cooking.
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