careersdeaf/HoH experiences

My academic path from self-reliance to self-advocacy to peer-support 

A young girl carrying a pink and white backpack with a stuffed animal sticking out walks into a very green forest
Unlike my academic bushwhacking, my daughter does find a path through the forest

Caminante, son tus huellas
el camino y nada más;
Caminante, no hay camino,
se hace camino al andar.
-Fragment of a poem by Antonio Machado, 1912

Last year a university invited me to share my path with hearing loss through academia at a forum to raise awareness of disabilityThe request gave me pause. After all, I feel that I am very much still figuring out my path – still adjusting, experimenting, succeeding, and failing every day in this academic setting. It’s hard to see a path when you’re actively bushwhacking! This train of thought was not very conducive to creating a presentation, though, so I asked myself a different set of questions: Sure, my path has been a constant course-correction, but what have been the biggest changes in how I work with my hearing loss in the last few decades? Is there anything about my story that can illustrate why university campuses, which often strive to be welcoming places, have such a low proportion of disabled faculty?1 I want to point out that there is nothing particularly special about my story – it is just the one I know best; but, because abandoning the academic career path is something I considered many times, perhaps parts of my story can show where it is easy for institutions and communities to fall short in creating environments where all disabled academics can thrive.

I grew up in Bogotá, Colombia with Spanish as my 1st language, and was extremely fortunate as a young child to have had the opportunity to learn English in a bilingual school. In my early teens I was diagnosed with sensorineural hearing loss. We don’t know what caused it or when it started, but it has been progressive. My hearing loss today is somewhere between severe and profound, which basically means I don’t hear very much at all. I rely on hearing aids, speechreading, and a few other strategies and technologies for communicating effectively.

Self-reliance

In Colombia, I was given a diagnosis but not much more – no education about possible mitigating strategies, no awareness of accommodations that could help in school. In fact, the term “accommodation” was one I didn’t encounter or even understand until much later in life. Lack of information, along with a (very) large dose of teenage denial, led me to conclude that hearing loss was a problem I had to deal with on my own, and I developed a ragtag bag of strategies through school and college. I couldn’t understand my teachers well, so I read a lot, was strategic about where I sat in the classroom, copied my classmates’ notes, did my best to speech-read… What I never did was ask for help. I was fortunate to do well grade-wise, but this got harder and harder as my hearing got worse and study material got more challenging.

I came to the U.S. for my Ph.D., which led to getting the hearing aids I had been sorely needing, and which theoretically should have given me access to more support than I had in Colombia. Universities in the U.S. have Disability Services offices, and there are laws that prohibit discrimination and ensure access to accommodations for students and most workers.2 These days, disabled U.S. public high school students often have accommodation plans and can go into college and graduate school knowing that they are entitled to ask for accommodations. However, as an immigrant I had never heard of Disability Services, and nobody bothered to tell me, so these benefits did not in fact become available to me. Surprising? Maybe. But also something you can easily imagine happening to others who, because of their immigrant or community background, may not know of resources for disabled students. People who acquire new disabilities may also not know about services available to them.

Self-reliance is a good skill to have. But we cannot expect people with disabilities to make it through the academic path with just self-reliance. Having to constantly problem-solve is exhausting. Relying on just yourself to come up with solutions to challenges leads to high failure rates. It also leads to feelings that it is you against the world – which seems more of a recipe for isolation and alienation than for increasing the presence of disability in academia.

Self-advocacy

I muddled through my Ph.D. with self-reliance, and once I became a postdoctoral researcher I had to make the decision of whether to apply for faculty positions. This was difficult for several reasons. First there was the fraught question of when I should reveal my disability and whether this would expose me to bias from the search committee. Second was realizing the degree to which constant communication is critical to the teaching, research, and service faculty are expected to do, and self-doubt about whether I could handle these situations. My previous strategies had all been about keeping my head low and making do… but when I started struggling with presentations and interviews, I realized that I was going to have to make requests for accommodations; thus began my experience with self-advocacy.

A few positive things about becoming faculty: I finally discovered that University Disability Services existed (!); I also learned about some helpful technologies such as FM systems and CART (real time transcription services) – both were helpful… sometimes… But I also found disappointment: university Disability Services are really mandated to serve undergrads, and it turns out they don’t know much about how to help faculty who are in very different working situations.3 And many aspects of being faculty with hearing loss were frankly scary: I’ve written before about my challenges with teaching and faculty meetings, and to be successful I now had to fulfill tenure expectations, which require you to demonstrate individual excellence; this excellence is judged by your colleagues and there is great pressure to show a sort of independent “pulling yourself up by your bootstraps” narrative. There is a lot of what is known as “academic ableism” in tenure expectations. This definition of academic ableism by Jay Dolmage will be recognizable to anybody trudging down the academic path: “The ethics of higher education still encourages teachers and students alike to accentuate ability, valorize perfection and stigmatize anything that hints at intellectual (or physical) weakness.”4 Yep, sounds like the tenure process…

The outcome of all this is that, ironically, there is much less institutional support for disability as individuals advance professionally. So self-advocacy, which is undeniably a good skill to have, also quickly reaches limits to its usefulness and there are downsides. (1) constantly anticipating and asking for accommodations is exhausting; (2) because of stigma and ableism, there are strong incentives in academia to downplay your needs – not a healthy recipe for success; (3) we disabled individuals don’t always know all possible tools that can meet a challenge, leading to high rates of failure or re-inventing of the wheel; and (4) it can be isolating to constantly be the only one making special requests.

Peer support

In 2017 I was a tenured associate professor and had been at my institution for 11 years. And something changed. I was still muddling, with an assortment of tools, through my faculty meetings, my teaching, my committees, my social interactions with colleagues… and I felt… tired… I felt I was constantly re-inventing the wheel in each of these settings, and that there had to be others like me with better solutions. I felt lonely. I felt angry that a person who had openly mocked disabled people had become president. I acutely felt effects from lack of mentorship and networking. In all my years in academia I had not had a chance to interact meaningfully with any other deaf or hard of hearing individual. So I started mulling over the idea of a blog that could help create a community of deaf and hard of hearing academics.

In 2018 I reconnected with Michele and in a conversation I pitched the idea of a blog. She was on board! After much work and a steep learning curve, in Sept. 2018 we launched The Mind Hears, a blog by and for deaf and hard of hearing academics. We had two objectives: (1) To build a network of academics with hearing loss that would decrease the isolation that many of us felt; (2) To create a forum for peer mentoring, where we could share experiences and potential solutions to our professional challenges. This blog moved me into the peer support part of my journey.

Michele and I envisioned the blog as a space for all deaf individuals, whether raised signing in the Deaf community or recently deafened, whether welcoming their deafness, or considering it an unwanted burden. All perspectives have value and we have all developed ways to succeed in academia that are worth sharing. Has the blog had impact? We think so. Since Sept. 2018 we’ve had over 54,000 views. We’ve published 68 posts by more than 35 authors. Our greatest number of views are from the US, but we continually try to reach deaf and hard of hearing people around the world and have had views and contributors from several countries. And we have had individuals reach out to tell us how much of an impact the blog has had for them. On a personal note, I can tell you that it has had a huge impact on me. I went from not really knowing any other deaf/hard of hearing faculty to finding a community with which to share successes and struggles. This community of peer mentors has made all the difference to my desire to stay on the academic path

Although 26% of the population is estimated to have some type of disability, only 4% of faculty report being disabled in the U.S. There are tangible consequences to the lack of representation of disabled people in academia.1 The benefits of a diverse workplace have been well studied with evidence that diverse teams are more innovative, engaged, and better problem solvers. Excluding faculty with disabilities reduces diversity on campus, depriving students, particularly disabled students, of role models and mentorship. By excluding faculty with disabilities, universities are also missing out on an untapped talent pool of workers. The Mind Hears is a small, but tangible, way to create mutual mentoring networks, peer networks that collectively can help make a difference in the representation of disability in academia. 

Footnotes

1. Grigely, J. 2017. The Neglected Demographic: Faculty Members With Disabilities. Chronicle of Higher Education. Vol. 63

2. Section 504 of education reform act of 1973Americans with Disabilities Act

3. When I first became faculty, a central Disability Services Office in my institution handled requests for accommodation from everybody on campus. The bulk of requests came from students and that is what the office was best equipped to handle. In 2018, accommodation requests from faculty and staff were moved to the Accessible Workplace unit within the Office of Equal Opportunity and Access (EOA) of Human Resources.

4. DOLMAGE, J. T. (2017). Academic Ableism: Disability and Higher Education. University of Michigan Press. http://www.jstor.org/stable/j.ctvr33d50

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