COMING TO TERMS WITH MY DISABILITY – Accessibility News International
By Amy M. Warren w
Globe and Mail, Mar. 16, 2020
I started my career as a 25-year-old professor eagerly running between classes, but my body held within it a debilitating illness. Looking back, there were clues. I was able to do “party tricks” (like bending my thumb backward until it touched my forearm), I had dental issues, I had knee surgery at the age of 16, I had multiple subluxations/dislocations of my hip, knees and shoulders, I had problems with my stomach, pain and migraines – all signals of my then-undiagnosed chronic illness.
The symptoms worsened as I tried to ignore them, as I aged, and when I became pregnant. (My body was not as prepared as my mind for pregnancy, and my daughter was born early. She’s now a thriving eight year old.)
But when I returned to work after maternity leave, instead of gleefully and swiftly writing notes on all parts of the board and doing laps in the classroom to demonstrate my enthusiasm for a topic, I could no longer easily teach on my own two feet. I was unable to reach the board I once used as a tool of the trade, and I often had to take deep breaths and grind my teeth to get through the pain my body was emitting at these inconvenient times. I had been diagnosed with Hypermobile Ehlers-Danlos Syndrome, a chronic disease that is a result of defects in the collagen in the connective tissue throughout the body.
I remember my father became mobility impaired in his thirties (from a different illness) and “retired” from his career before he turned 40. He joked a lot about being a young retiree in an attempt maybe to mask the burdens, both emotional and financial, associated with his care.
So here I am, the disabled, 41-year-old professor not ready to “retire,” but maybe I’m ready to ask for help.
I look to Professor Xavier from the Marvel Universe for inspiration. Professor X was paralyzed mid-career, after Lucifer (the alien) injured him. Many might argue that he became more valuable postinjury. He became an amazing professor, who mentored youth on how to use their powers for good rather than evil. But in the real world, there are few examples of visibly disabled professors. Statistics Canada noted that in 2017, 59 per cent of Canadians between ages 25-65 with disabilities were employed, compared with an employment rate of just more than 80 per cent for non-disabled Canadians.
My physical working world is designed for the able-bodied professor. These ivory towers where we teach about equity, diversity and inclusion often do not employ people who would have difficulty physically navigating these buildings.
This does not make me bitter; it often causes worry. I constantly wonder, what if I can’t get to a meeting on time because the building lacks true accessibility? What if I can’t get into a room because of the arrangement of the tables and chairs? What if I can’t go to a function because there is no elevator or because there is no bathroom close by that is wheelchair accessible? What if no one talks to me because they feel uncomfortable? What if someone asks me what is wrong with me? What if they are certain yoga will cure me? I don’t ask these questions without warrant; I have had several negative experiences related to every one of these thoughts.
The university I work for accommodates disabled employees, but you need to ask for help. Despite my personal view of the importance of equity and accommodation, I did not check the “disability” box on the employment equity survey until this past year.
I struggled with the term disability just as I struggled with mobility aids for the past eight years. Would checking that box mean disability was now officially part of my professional and personal identity? If I checked the box, did it mean I was giving up? Did it mean there was no longer hope that I would be able to rely on my own legs again?
But I knew I needed help, so that I could continue to be a professor. I logged on, checked the box and cried. No, that is a lie – I sobbed.
Checking the box was years in the making; it required a physician, a physical-medicine specialist, a nurse, an occupational therapist, physiotherapists, orthotists, a recreational therapist, an acupuncturist, a kinesiologist, a social worker, a dietitian, a psychologist, family, friends and students. Everyone wanted me to see the tools that I need to function as positive rather than negative.
Checking that box at work allowed me to be willing to also get the things I needed to make my home life easier. That is why, for example, the most God-awful bath lift now takes up the majority of space in my bathtub – a place that was once my sanctuary. Counselling continues to help me get to a point of acceptance and I am trying to find new ways to experience joy, which no longer includes things I loved to do such as hiking – and running around a classroom to demonstrate my love of learning. My friends and family listen when I am willing to talk, and of course they too have tried to navigate through their own grief about what seems to be lost.
The complexity of being a disabled professor stems from the buildings I have to operate within rather than the people I work with. Most buildings do not accept me, they are my kryptonite (apologies for switching from the Marvel Universe to the DC Universe). I have to state outright the tools of the trade that I need as a professor who just happens to use braces, crutches and a wheelchair. Happily, my students often assist me before I ever have to ask, and ask questions about how to make organizations better for those with physical impairments.
I have hope for a universe outside the comics where checking the box will become unnecessary. Maybe some day those I teach will help design solutions and will be provided the necessary resources to build them.
Amy M. Warren lives in St. John’s.
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