Editor’s note: Is your child or young adult an individual with deafblindness? Do you wonder what it’s like to be DeafBlind? In recognition of DeafBlind Awarness Month, George Stern shares his perspective on living with deafblindness. George is a deafblind Afro-Caribbean immigrant who’s interested in all things food, linguistic, and social justice.
Several lifetimes ago, during my long and illustrious career as the best class project ever (I routinely got asked to be a part of other people’s class projects as a subject), I fielded this question from a child in Georgia: “What is it like to be deaf-blind?”
I told her this.
Mostly, it’s confusing. You can see that just from the name: is it deaf-blind, Deaf-Blind, deafblind, DeafBlind, deaf and blind, or something else? Beyond the issue of proper naming, though, deafblindness is still very confusing. It’s an in-between disability, like an airport is an in-between place. At an airport, you’re in-between destinations, places. With deafblindness, you’re in-between worlds and expectations, your own and others’. Let me explain.
By “worlds,” I mean the hearing/sighted or “normal” world, the blind world, and the deaf world. As a deafblind person, I don’t fit comfortably in any of these worlds; I’m in-between. And, since each world has a set of expectations – (blind people are expected to do everything with super hearing, deaf people are expected to be very visual, and hearing/sighted people are expected to mostly use vision, too) – I am between expectations. I’m expected to have super hearing, but don’t; I’m expected to use (visual) sign language, but can’t see to do so; and it’s at about this time that people, or even I myself, want to throw up our hands at the confusion of it all. But, there’s no need for that.
Going back to our analogy: as an in-between place, an airport is as miserable or as happy as you and those around you make it. So, you can have a departure gate full of crying babies and impatient passengers, or you can have one where a random guy is playing a guitar and everyone is smiling and relaxed. Deafblindness is like that, too. It’s human to be confused, worried, even a little afraid when you’re in-between. But, with preparation, and the willingness to find joy and share it, in-between becomes as wide and wonderful a world as any other.
My joys: tracing a spider’s web without breaking it; finding things by touch which others’ eyes have missed; good-smelling people; and well-put-together sentences.
What did you say about frogs?
Divinities willing, that child has since become an adult.
And me? I’ve gotten into the habit of posing the question, “What did you say about frogs?” This isn’t because any of the people around me are particularly vocal about frogs; rather, it’s yet another coping mechanism, another intentional choice about how I express deafblindness to make its murky in-betweenness a little more bearable.
Usually, there’s an incredulous pause as they rack their brains to see if, in fact, they’d said anything about frogs, maybe without meaning to. Then, once they realize they hadn’t, they almost invariably make any of several sensible accommodations, i.e., slowing down and crisping up their speech, moving closer to me, projecting their voices towards me rather than mumbling out into the nether regions of elsewhere, or resorting entirely to tactile communication. Sure, I could have just asked, but the frogs take the pressure off, which in turn lets people arrive at the accommodating solutions themselves; and aren’t we always more committed to, invested in, the solutions we work out than the ones that are imposed on us?
Besides, the word frog is just so hilarious, hopping around out of context, a little sharable capsule of joy – and sweet Dalmatian puppies, do we need more joy these days, because the metaphorical airport I chose to explain deafblindness with has only become more apt, and not in a good way.
DeafBlind Awareness Month
So, for DeafBlind Awareness Month, “What is it like to be deafblind?” Still confusing, but let’s add to that potentially isolating and debilitating, at least without access-centered policies and communities. The most frequent questions I see asked in the deafblind Facebook groups are “Where’s the best place to find DB community?” and “What kind of job can I do/degree can I get?”
It’s still an existence teetering precariously between worlds and expectations, and let’s add cultures to the mix: non-disabled culture with its forceful presumption of normalness; Big D Deaf culture with its hard-won, cocksure sense of unique linguistic and experiential identity that can all-too-quickly curdle into insularity; blind I’m-not-so-sure-we-have-a-culture because we’re still struggling in the mud of respectability and conformity politics.
In policy and research circles, they call deafblindness a “low-incidence” disability, meaning both that we’re a teeny tiny percentage of the larger sample population, and that the complexity of our “needs” requires extraordinary resources to “solve.”
I don’t use the term low-incidence in my advocacy work anymore; it just doesn’t capture the constantly moving target that is the lived reality of deafblindness.
Stats and population estimates, plagued by chronic undercounting and underreporting, do just as poor a job – so I don’t use those either.
What I choose to use instead are stories, analogies, metaphors, impressions, questions.
Like this: Living with deafblindness is pretty awesome when your friends’ first responses to a forwarded article on an emerging tactile language is “I’d love to learn that.” It’s maybe not so great when you’re an avid reader wanting to learn braille to keep your passion alive, only to be told “You don’t need that,” or “We don’t offer that,” at every turn.
Living with deafblindness is having unique, sharable insights into consent culture, safe touch, alternative means of perceiving/describing the world around us – and it’s wondering where exactly you belong in said world, in life. It’s like eating mangoes: flavor and texture changing from bite to bite, fruit to fruit.
It’s like living with the knowledge that, at some point, we’re going to forget one (or several) essential passwords. We can fixate on the specifics of how and why we might forget, make unwise security choices in the name of not forgetting, even convince ourselves for a long time that forgetting happens to other people, not us. Or, we can acknowledge our forgetfulness in all its imminent potential and get on with living our lives, using the full suite of password storage, retrieving, generating, and bypassing tools that a foresighted tech industry has provided us.
Yeah, living with deafblindness is like that, except with a distinct absence of foresight on society’s part, and tools still very much under construction.
- Emergent Literacy for Individuals Who Are Blind or Deafblind – FamilyConnect
- Dicapta: Spanish Audio Description Services and Technology for Accessibility – CareerConnect (aphcareerconnect.org)