Recently, my employer announced that we would have Employee Resource Groups. They provided a list of example groups that employees could choose to join. At the announcement they offered “employees with disabilities” as one option. I was excited to sign up to lead that group! The following week when the google form went out asking us which groups we’d be interested in joining and leading, the title had changed to “differently abled.” My response was “I would like to lead the disabled group (which will not be called differently abled) and participate as an active member of the LGBTQIA+ group.” I’m curious who made the change, whether they are disabled, and why I had such a strong negative reaction to the switch.

I wrote a little bit about my identity as a disabled person in the Disability Pride Month post. As with any identity my understanding of it is constantly evolving, as I encounter new situations and learn more about both myself and the disability community. I’ve primarily been reading light, fun books – in 2020 when the world got scary I started reading exclusively romance novels. I needed the predictable structure to make books a fun distraction. I did make my romance novels a learning opportunity by always choosing books that centered characters from marginalized communities (including many disabled characters). As time passed I’ve added some more variety to the books I read, including some historical fiction and books for work, but I’m primarily using audiobooks as entertainment while I rest, which means they need to be cognitive rest too. I was excited to discover when the book Haben showed up in my Libby feed, that my brain could handle listening to it. It’s an engaging memoir of a deafblind disability rights lawyer and activist. Listening to this book helped me give language to the reaction I had to the phrase “differently abled.”

Quote from Haben (7:21 – I don’t do page numbers anymore, instead books are measured in hours and minutes) “Disability is not something an individual overcomes. I’m still disabled, I’m still deafblind. People with disabilities are successful when we develop alternative techniques and our communities choose inclusion.”

I wrote previously about how my parents couldn’t avoid discussing my allergies with me and how they made me different. However, we rarely discussed my other disability – my hearing impairment. It was identified at a kindergarten screening and my parents didn’t hide it from me, I knew why I had an annual audiologist appointment. They advocated for me to ensure I sat at the front of the classroom so that I could hear the teacher. And then that was it. Because my hearing is perfect in my left ear I never had any issues in our quiet house (that’s why it wasn’t identified until kindergarten). Neither of my parents had hearing issues (past tense because they both are of an age that they should be getting hearing screenings, go to the doctor if you’re reading this!) so when I didn’t complain of issues they generally forgot about my difficulty hearing and so did I. 

When I was little I remember feeling So Frustrated playing a game of telephone with other kids. We sat in a circle and kids whispered a message from ear to ear. The person on my right whispered something in my right ear and I couldn’t understand a single syllable. I asked them to repeat the message and still understood nothing. Other kids encouraged me to just say whatever I heard, because the point of the game is for the message to get messed up bit by bit as it was passed along. Except I heard nothing. I eventually sat back and let the message be shared with the person on my left. Had we been playing the game counterclockwise rather than clockwise I wouldn’t have had an issue at all and would’ve had fun laughing along with everyone else. Had I remembered that I can’t hear any conversational tones out of my right ear, turned, and offered my left ear, I also would’ve been just fine. But I didn’t, because I forgot that the thing I go to an annual doctor appointment for might be relevant in any situation outside of that booth where I wear the tight headphones and they ask me to repeat words and raise my hand as I hear tones. 

As I got older I started realizing there were spaces where other people could hear and I couldn’t. Much like the fact that I never realized my vision wasn’t perfect because I assumed no one could see faces across a cafeteria – everyone’s vision fades at some distance! – I also assumed that when I couldn’t hear it was hard for everyone to hear. (The fact that I sat in the front of the classroom for my hearing also aided in my late identification for needing glasses, I could see the board just fine from the front row!) In high school French class the teacher rearranged seats once in such a way that my left ear was directly next to the heater, which was noisily blasting hot air all class. I tried to explain to the teacher as he was assigning seats, but didn’t have the language to explain in French and he thought I wanted to sit next to my friend. After class I stated my case more clearly and firmly (in English) and the problem was resolved. By the time I got to college I couldn’t always remember which ear I could hear out of so I used the muscle memory of grabbing someone’s shoulder with my right hand and swapping them to my left side to remind me. 

What does all of this have to do with the phrases disabled and differently abled? My hearing is an impairment. It is harder for me to hear than most people. I have very limited directional hearing (a skill that relies on two ears), I miss sounds that are only on my right side, and adding background noise makes my hearing even worse. The quantity or quality of my hearing doesn’t impact my value as a person. The fact that I can’t hear out of one ear does have an impact on how I interact with the world. I need the world to make accommodations for me. When I was teaching in a classroom I explicitly told the class on day one that they’d need to give me a visual signal when they wanted my attention because just calling my name left me oblivious to who needed help until I could recognize all of their voices (and even then it’s a lot easier to just follow the waving hand than to inspect each face to find the match to the voice). I was communicating that I had a disability and that I needed people to act differently. 

Disability isn’t shameful, but it is real. I think that’s the heart of what upsets me about the phrase “differently abled,” it minimizes the reality that the world is built on assumptions about what humans can do, and every time someone falls outside that norm it takes effort to figure out how to provide access. 

Let’s revisit that quote from Haben, “Disability is not something an individual overcomes. I’m still disabled, I’m still deafblind. People with disabilities are successful when we develop alternative techniques and our communities choose inclusion.”

I resonated with so many examples from the book. People asking “why didn’t you say something?” when you say that you didn’t hear them; because I can’t alert you to the fact that I had no idea you were speaking! Avoiding locations that are hard to hear (e.g. bars) and sitting back without trying to join the conversation when it becomes too exhausting to try. And then the novelty of someone who understands, who moves to a better location or speaks more clearly or asks what accommodations you’ll need. I’m excited to start the Employee Resource Group to have this conversation with colleagues with disabilities, and to share with the whole company ways that they can be better advocates for us. I’ll report back what we decide to name the group and what other resources we dive into together. In the meantime, go read Haben! It’ll take you less than 8 hours if you listen to it, or if you read at the same pace as the author speaks (it was extra cool to hear a memoir read by the author).