An Update



I realize that it has been a while since I last wrote here. I think it’s best to say that the past few months have been quite challenging. To risk a cliché, I’ve essentially “come out” as a person with disabilities. I am more vocal than ever about my lived experiences as someone living with hearing and vision loss, and it discomfits some people.


I received a diagnosis for Usher Syndrome Type II. On one hand, the diagnosis was scary, because I was not sure how my family would take the news. On the other hand, it was immensely empowering, because I now had the language to talk about my experiences with hearing and vision loss (having been born with bilateral sensorineural hearing loss). My increased anxiety about night outings was validated by the words “Retinitis Pigmentosa.” Indeed, I had lost much of my night vision in a handful of years. Additionally, my reticence regarding driving a car was justified with confirmation of my declining peripheral vision. I was not illogical. In spite of what people tried to tell me, I was living with multiple disabilities, and only now I have “official” recognition.


The first thing I felt when I saw the words “Usher Syndrome” on the referral slip was a strange sort of glee. “Ha! All those years people told me I was just making things up- this proves them wrong.” After the glee passed, then came the anger. I was angry that I was 25 years old and just now learning that I inherited a double-recessive, autosomal genetic condition from my parents. At the end of that anger was a realization that, at 25, I am also most poised to do what’s best for my health. As an adult, I have unlearned much of what I was taught about “blood.” A worldview that ties disease and disorder to divine punishment is not at all tenable to a recognition of basic genetics. The churches I grew up in emphasized generational curses, citing stories from the Old Testament. I vividly remember one Sunday, a Sister in church, clad in bright red and sequins, testified that she had a terminal illness because she lacked faith, and instead sought answers from secular doctors. I was 12, and already critical of such stances.


In that context, it was easy to say “well, [ailment and/or disability] is a trial from God” just as it was easy to put people with disabilities on pedestals as “proof of God’s glory” so long as they conformed to what was expected of them as pious disabled people. Where I am, spiritually, emotionally, intellectually and socially, I can safely say that genetics has little to do with morality. To suggest such is to buy into a fundamentally ableist theology (one that offers particularly fertile grounds for eugenics and Malthusian overpopulation rhetoric.) It is also a theology that reduces people with disabilities to moral “object lessons.” “If you believe hard enough, you will be healed too.” The subtext was that chronically ill and disabled persons who did not seek to be like their “able-bodied” and “neurotypical” (“of sound mind”) peers were given over to iniquity. How dare they not be covetous of their better-off peers?


It took a great deal of unlearning and undoing to get to where I am now. “Don’t let your disability become an excuse” was a common refrain I heard growing up, but when I succeeded and surpassed my able-bodied colleagues, I was quickly reminded to “stay humble” “don’t think you’re better than us with your fancy degrees” and “don’t get too big for your britches.” The double-talk was astounding. I finally accepted that I’d never be “good enough” by those measures. The measures themselves are flawed.


What’s often missing in discussions of ableism is how utterly structural it is- even as it is deeply embodied. Our societies are structured around the needs and wants of presumed able-bodied and neuro-typical persons. Corporate mantras exhort us to “take the stairs” because “there is no elevator to success.” In those same contexts, accommodations for people with disabilities are often seen as “costs”- but lesser costs than a potential lawsuit. This is what happens when people are valued based on their assumed productive capacities (based on a metric where maleness, whiteness, able-bodied-ness, etc are the “norm” or moving center from which all “difference” deviates.)


Really,  I’m not saying anything new here. I suggest reading work by Mia Mingus and Kay Ulanday Barrett, both dynamic activists and creators living with disabilities. (I emphasize “living” here because “disabled” is too passive a word.)


In the future, I think I will write more specifically about my experiences with hearing and vision loss. And food- I’ll write a lot about food. :)


Leave a Reply

Fill in your details below or click an icon to log in: Logo

You are commenting using your account. Log Out /  Change )

Twitter picture

You are commenting using your Twitter account. Log Out /  Change )

Facebook photo

You are commenting using your Facebook account. Log Out /  Change )

Connecting to %s