My daughter and I have the same phrase that we repeat often: "I'm sorry, I can't hear you." It took my awhile to really unpack why we felt the need to apologize since we are both hard of hearing/deaf. My daughter has failed every hearing test performed on her left ear since the day she was born. She has mixed hearing loss. My family is probably a lot like your family. We don't find out about shit about each other until something impactful happens. Becoming Addison's mother and self-educating about the best ways to mother a child who is hard of hearing/deaf led me to identify my own disability. "Oh yeah, Jazz. Your Great Grandma and your Aunt had progressive hearing loss. You had bad ear infections on the left as a kid too," my mom explained as though this wasn't valuable information to have known in my teen years or before.
I made an appointment with an audiologist. I was stunned when both the hearing tech and the doctor explained that I had a deformity in my left ear, that my inner ear was really damaged and not testing within normal range. "You could wear a hearing aid and that would help, but at this point it looks like you'd learned to navigate without that side hearing really well," the doctor shrugged. "I'm more than happy to give you a device if you'd like, it'll definitely make you look disabled, though." I couldn't hear much on my left side around 57 decibels and difficulty increased depending on ambient noise, how far away someone was, and the tone of someone's voice. The tests showed anatomical conductive issues (my ear canal and ear drum) combined with sensorineural hearing loss. The diagnosis helped me make sense of my anxiety. I'd spent years compensating and not realizing it. The hearing loss was so much a part of my life that I never noticed how I watched folks lips when they spoke, that I'd turn to the right side to hear better, or that I felt highly overstimulated often because I would focus so hard to hear and understand what was happening around me. Even now I have insecurity about calling myself a member of the hard of hearing/deaf community because I compensate so well. The amount of physical and mental energy I exert to compensate is very draining. Often, when I tell folks about my disability, the only time I receive accommodation is when I refuse to compensate for my disability and make it utterly apparent that I am unable to hear. The ableist gaze and relinquishing my own resiliency is often required in order to be treated with dignity as someone with an auditory disability.
For the Black queer woman with a disability (me), the compound oppression makes navigating through the world very difficult, and often means that folks either refuse to engage in building accessibility in mind or I receive pity and am treated without dignity. The strong Black woman trope often comes into play with how folk interact with me once they find out I am disabled: "wow, I would have never been able to tell that you are hard of hearing/deaf." The progressive movement spaces have been some of the worst enactors of harm around my experience with disability. I've witnessed very few conversations about the progressive reflex to engage in the politics of rescue. My personal traumas around my experience with disability convicted me to interrogate the ways in which I also engage in rescue politics and require the other to be a subject of pity rather than dignity.
Part of the power I've been intentional about cultivating in my daughter, Addison, centers on her vulnerability. Her hearing loss makes her vulnerable in a world that prioritizes the needs of those without auditory and other disabilities. That same vulnerability evokes emotional responses from folks who come into contact with Addison, even more so because she is read as Black. I've explained and modeled to Addison that she should not trust those who do not treat her with respect and require her to be a subject of their pity. Their behavior is about their need to feel good (power) than it is about truly understand Addison's abilities. I model and teach Addison that she should invest in those who shift their power to her and work to change the conditions that keep her from access. I teach her that she has an unequal relationship to many people not because she is any more vulnerable or disempowered naturally, but because those who have the power hoard the power. They are greedy and do not have the skills to create identities outside of their unearned power. I teach her this, because I want (more than anything) for her to externalize the narratives about people with disabilities that I have internalized. I've spent too many hours of my life feel utterly devastated that I couldn't will my physical abilities beyond what they were. I've vacillated between having to make my disability super obvious, and feel undignified as a result, or completely hide it in order to be treated with respect and care. I've had to challenge the reflex to model victimhood while also holding in tension the ways in which social interactions with the ableist gaze do victimize me.
"The biggest problem that we, the disabled have is that you, the able bodied, are only comfortable when you see us as icons of pity." - Nabil Shaban, disability rights activist
Questions to ask yourself as you work to interrogate your ableism:
- Are there parts of my life and interactions with others with disabilities that have been designed for their dependence on me?
- What sort of unspoken social arrangements to I engage in that help me maintain positional power over others with disabilities?
- Have I created models of interaction that dehumanize those with disabilities?
- Disabilities are not fixed. Often accommodation needs change depending on the environment and circumstances. Do I take time to ask the disabled person what they need today, in this moment, to have equitable access to what we are doing.
- Do I actively challenge my internalized beliefs informed by oppression and frame new narratives about people with disabilities.
- Do I risk making mistakes and make myself vulnerable to not "being perfect" which is a form of ableist anxiety.