By writing this post I am outing myself as a disabled scientist. This will likely come as surprise to many of my colleagues and trainees as I haven’t disclosed my disability to many people at work. I have a hidden disability and as such have had the luxury of letting people know about my disability or not sharing this information. This ability to be selective in my disclosure choices is not one that persons with visible disabilities have. I have also not had to live with my disability for very long. I was diagnosed with my hearing impairment in February 2012 and have therefore only been aware of it for about 4 years. I am choosing to share my story now in order to show other early career scientists that it is possible to survive and thrive with a disability in academia. It can also serve as a reminder to everyone that disabilities can develop at every life stage and quite unexpectedly.
I first suspected that something was wrong with my hearing in the Fall of 2011. I was having consistent difficulty hearing my husband, especially if he was speaking to me around a corner or with his face turned away from me. At first we joked about my selective spousal hearing, but as time went on it became more apparent that something wasn’t right. My husband would often talk about everyday sounds (e.g. barking dogs, machine noises, thunder and rain) and how annoying they were, but I wasn’t hearing the same things that he was. I was also finding that I would have to ask students to repeat points that they were making in class because I would miss some things the first time around. In February 2012 I booked an appointment with my doctor who recommended that I see an audiologist for a hearing test.
Getting a hearing test done is a pretty surreal experience. You go into a sound proof booth, wear headphones and sensors and listen to tones and spoken words in order to assess the range of frequencies and syllables that you can hear. There were parts of the exam that were eerily silent and that signalled to me that there was something definitely wrong with my hearing. I have an impairment in the low frequency range which is very uncommon. Most people exhibit a loss of high frequencies and this typically happens as people age. As such, I’m a pretty unusual client for the clinic given that I have atypical hearing loss and I’m younger than most clients by several decades. The clinic was able to program some loaner hearing aids for me to try out the same afternoon as my exam as a first step towards treating my disability.
The first afternoon with hearing aids was pretty shocking. It was only at that point that I realized what I had been missing due to my disability and that the problem had probably been going on for quite some time. When I turned on my van to drive home, I heard a really strange sound. It turned out to be the seat belt warning bell and it sounded completely different than before. Dinner that night with my family turned out to be very challenging. The settings on the aids weren’t quite right and everyone sounded like they were screaming. It was pretty clear by that first evening that the hearing aids were extremely helpful and necessary.
Having a disability is financially challenging. The best hearing aids for my situation cost $5,000 (they are pictured beside this post). The government covered $1,000 of this cost and my employer’s health plan paid for $500. That left us on the hook for $3,500 which was a huge dent in our budget that year. I felt a bit guilty for needing the hearing aids, which was ridiculous. The other on-going cost is hearing aid batteries. I wear my units for 16 hours per day and need to replace the batteries every 5-7 days. It’s made me realize the true cost of assistive devices and the inadequate coverage by government and employer healthcare plans. After a request from me our union attempted to negotiate for better coverage in our last round of collective bargaining but was unsuccessful.
My disability largely presents challenges in the teaching and service realms of my job. I have difficulty hearing voices in the low frequency range, so “low-talkers”, male students, and quiet speakers of both sexes can have voices that are challenging for me to make out. This sometimes makes discussions and question/answer sessions in class difficult. I’ve gotten comfortable with asking students to repeat themselves or speak up when I need it. I may go so far this year to disclose my disability to my students and to ask for their assistance by requesting that they speak loudly and clearly for everyone in the classroom. I have also experienced some difficulties in faculty meetings, especially with some of my “low-talker” colleagues or friends who have learned English as a second or third language. At conferences, presentations in large rooms without microphones can be difficult and social events at the pub are my own personal version of Hell. Thus far I haven’t asked for any accessibility accommodations at work, but I have asked conference organizers to make sure that speakers use microphones and to think about background noise levels at social events. This summer I had a heating vent leak in the ceiling of my office that was making a hissing noise. Amplified by my hearing aids, the sound was distracting and irritating until fixed.
Assistance on campus is a bit confusing. Accessibility services are mostly focused on students and our equity office recently underwent restructuring. This has meant that knowing where to go for information and help is not always obvious. With the recent passing and implementation of the most recent version of The Accessibility for Ontarians with Disabilities Act lots of positive change is happening on campus and in the community. I will admit to being woefully ignorant of accessibility issues prior to becoming disabled. I am still struggling to integrate my identity as a person with a disability with my other identities of being a scientist, female, mother, and partner. These multiple identities are really interesting and I’m still navigating the landscape.
Thus far I only disclosed my disability to two people at work. One is a friend and the other was a colleague that I was co-teaching with who I felt should know how my disability might impact my performance in the classroom. This blog post essentially lets the cat out of the bag with respect to my socially savvy colleagues. The timing of the post is not co-incidental; I waited until I had tenure before writing and publishing it. I fully expect that my colleagues will be supportive and understanding, but the fear associated with the stigma that still surround many disabilities certainly factored into my decision to delay disclosing my condition.
If we are fortunate to live long lives, all of us will have to stare disability in the face. My disability has made me a stronger and more compassionate person. I’m a bit chagrined that it took becoming disabled to recognize the struggles and everyday realities faced by many people around the world. If you are looking for a way to make a positive impact, there are some great resources on universal course design that you can implement in your syllabi, classrooms, and assignments. Accessibility accommodations don’t just help those with disabilities; they help everyone.