Invisible Disability by Rev. Jonathan Rogers
On my Mom’s side of the family, a lot of folks have hearing loss. It’s genetic. When we get together as a group, people are just really used to speaking clearly and making eye contact, and maybe being a little louder than usual. On my Dad’s side though, most of the family does not have genetic hearing loss, and so they’re much less in the habit of accommodating people who have a hard time hearing. My mom herself has severe hearing loss, which even the best hearing aids only partly help with. So the first time she met my Dad’s family, she had a little bit of a hard time following the conversation. They were talking about my father’s father, my biological grandfather who passed away when my Dad was still a child. And they were saying what an excellent sailor he had been. He was a master. The family went around, one after another affirming that when it came to sailing, he truly was a master. And as the conversation went along, my Mom’s eyes were kind of getting wider and wider, she was looking more and more shocked. Finally she couldn’t take it anymore and she said “We might have THOUGHT my father was a bastard, but we never would have said it!”
So, I have a genetic hearing loss, and from what the audiologists have said my understanding is that I hear about half as well as the average person. Here’s my little hearing aids case, and these really are a treasure of my life. And it’s understandable if you’ve looked at me before and thought “Boy, with ears like those he must have SONAR hearing!” My condition is such that I can kind of, sort of get by without wearing hearing aids, if I choose. Almost until the time I graduated from divinity school I rarely wore my hearing aids at all. But I say kind of, sort of, because when I don’t wear them I usually have to ask people to repeat about half of what they say to me. In group settings I have to be very mindful of sitting where I can hear the speaker. For the last five years, I’ve worn my hearing aids almost all of the time outside my house. I still don’t like wearing them at home, though, and my wife Annie now reports that she’s gotten so used to closed captions on the TV it seems weird when they’re not there. Being able to get by without my prescribed accommodation gives me a level of privilege that many among the subset of people with disabilities do not have. I regret having spent years where I did not avail myself of hearing aids for reasons of comfort and fashion, and I understand the potentially resentful feelings of those whose hearing loss is more severe than mine and/or whose access to accommodations is less than mine. But if you’ll allow me to set my issues of vanity and weakness for discomfort aside for a moment, I would like to speak about my experience as someone who spent decades not being able to hear the people around me very well.
Any time I was or am unable to hear something that’s been said to me, it brings up a sudden and complex mixture of negative emotions. I feel angry at the person speaking for not having spoken in a way I could understand. I feel guilty for not having listened harder, and sometimes ashamed that I did not have my hearing aids in. I feel confused about what I missed, and anxious about whether and how to ask for a repetition or clarification. I feel impatient with myself and the speaker that now we have to go back over something. I feel afraid that if I pretend to have heard, my reaction will be inappropriate; sometimes I’m pretty good at pretending, but sometimes I’ve really embarrassed myself!
What all this means, is that when I feel attacked around something regarding my hearing, I flip my lid instantly. I react from my brain stem, my lizard brain. Now, that doesn’t happen to me every time I can’t hear something, but if I get even a hint that the other person feels resentful, or careless, or mocking about my ability to hear, it’s game over. I’m reacting from my brain stem, and that impulse is hitting fast and hard. Under those circumstances it literally takes me several seconds to gather myself, take a breath, and think about what I want to say. I can still remember like it was yesterday a time in 5th grade when I asked one of my classmates to repeat himself, and he just put his hands up to the side of his head and did an impression of someone with big ears who couldn’t hear. That one still stings.
Being deaf or hard of hearing is often considered an invisible disability, or a hidden disability, because it is a disability that is not apparent. These can be physical, psychiatric, learning, or any other type of disabilities that range from ADHD and anxiety disorders to hearing and vision loss to Ulcerative Colitis. I found multiple online estimates that between 10 and 20 percent of Americans have invisible disabilities, but anecdotally I think that number is much higher. Since the topic of this service was published, multiple people have reached out to me unsolicited to let me know that they have an invisible disability. Many people with chronic illnesses are disabled by those illnesses in ways that are invisible. For example, UUCA member Alan Avery wrote to say that after battling life-threatening necrotizing fasciitis, he has been disabled by the effects of this illness and the 6 surgeries that it has taken so far to treat him. Despite the long and dramatic impact the disease has had on his life, Mr. Avery shows no external signs of disability. Nonetheless reflecting on his own catastrophe has opened his heart to the suffering of those around him, and he relates that he and a complete stranger began sobbing in each other’s arms when they realized they were shopping for the same difficult-to-find wound treatment. The tragedies in our own lives can help us develop and deepen empathy and compassion for what goes on in the lives of others.
Beyond learning to feel each other’s pain, there are real-world steps we can take to be inclusive of people with disabilities. “Ableism” is discrimination or prejudice against people with disabilities, and one of the things we can do is be aware of when we use ableist language, and try to avoid such terms and phrases. For example, you may have noticed that “Standing on the Side of Love” has changed lyrics to “Answering the Call of Love”. And it never occurred to me until Don pointed out this week how sadly ironic it would have been to sing #112 “Do You Hear” in this service that I realized the ableism in that title. You can find a long list of ableist terms at multiple sites online, and I want to give a special shoutout to autistichoya.com. The author of that site, Lydia X. Z. Brown, has this to say about the list of ableist terms she has compiled, which I found helpful: “Note that some of the words on this page are actually slurs but many of the words and phrases on this page are not considered slurs, and in fact, may not actually be hurtful, upsetting, retraumatizing, or offensive to many disabled people. They are simply considered ableist (the way that referring to a woman as emotionally fragile is sexist, but not a slur). You’re not automatically a bad or evil person/activist if you have used random language on here, but if you have the cognitive/language privilege to adjust your language, it’s definitely worthwhile to consider becoming more aware/conscious of how everyday language helps perpetuate ableist ideas and values.” You’re not automatically a bad person if you say something accidentally offensive. We are all going to make mistakes in the process of learning. But part of our call as Unitarian Universalists is to become more aware of how everyday language perpetuates systems of oppression, including ableism. We are also on the verge of a great opportunity to be a more accessible congregation as we prepare to move, and I hope we will prioritize accessibility in our new facility. We are also seeking to become certified in the Accessibility and Inclusion Ministry (or AIM, for short) program, and our AIM Team would love your help if this is an area that calls to your passion and/or skill.
So thinking of my own experience with disability and what I have learned from it, I am of two minds. One the one hand, looking at the big picture, none of what I have been through is a huge or life threatening deal and it rates overall quite low on the scale of human suffering. But on the other, my hearing loss is real, and working through the impact it’s had on my life has helped me to be more empathic toward others who have marginalized identities. I want to be very clear that having a moderate hearing loss does not mean I know what it’s like to be a person of color, or LGBTQ, or any other marginalized identity, or even what it’s like to have a severe disability. If I say something that equates my experience to having an experience or identity I have not had or do not have, it is an accident and a mistake and I am wrong to do it. But what I can say for myself is that when a conflict involves my hearing, I am way more likely to lose my cool over it. A brief, innocuous interaction can immediately become rife with anger and defensiveness for me. And usually that doesn’t happen for the other person. What this has taught me, is that when we are talking about something like race, or gender identity, or accessibility, something where the topic matter potentially relates to a day-in, day-out lifelong struggle for some of the participants but not others, this is not neutral ground. The feelings of those with marginalized identities are way more at stake, and therefore matter more than the feelings of those with privileged identities. When you’re talking about something that directly relates to the marginalized identity of one party in a conversation, but not to another, the feelings of the party whose marginalized identity is in play matter more. This is not to say that when we are talking about racism White people’s feelings don’t matter. They do. We are Unitarian Universalists, and to us everyone’s feelings matter. But the reactions of People of Color and Indigenous people are so often bound up in experiences and memories of trauma, of shame, of resentment, of fear, of anger, of so many different things that I cannot even think of or imagine as a White person. And so these discussions are not neutral, there is way more history and way more stakes for those with marginalized identities, and we need to approach our difficult conversations in a way that acknowledges that.
In concrete terms this means having space for People of Color and Indigenous people to discuss and process their feelings and reactions away from the judgment of the White gaze. I’m talking about caucus groups. Our UUA’s curriculum Building the World We Dream About puts it this way: “The experience of racially or ethnically marginalized groups in the United States context is nothing short of tragic: the loss of identity, dignity, property and cultural communities, assignment to second-class citizenship… not to mention the violent crimes against the (brown) body over time. Yet still, People of Color and from racially and ethnically marginalized groups have found enormous strength through adversity. The reflection group for People of Color and from racially or ethnically marginalized groups will work to affirm and heal the spirit of those with marginalized racial and ethnic identities by first naming the landscape of their experience. They will also consider how to create healthy relationships alongside White people who are committed to dismantling structures of systematic domination.” And yes, white allies should have space to process and grow in this work also, and we should have mixed groups too, no doubt. But first we have to acknowledge why the way we are having these conversations right now is problematic, and that a power differential that disadvantages People of Color and Indigenous people in our movement and in our congregation is part of that.
When someone trivializes, dismisses, or mocks the hearing loss that marginalizes me, I flip my lid. I get so mad I can’t even think clearly. I cannot imagine how many more times over that would be true if instead of the realities of moderate hearing loss, I was facing, for example, the realities of being a Black person in the USA. I can only speak for myself, but I know that when someone’s talking about my marginalized identity, and I don’t feel like I am being properly respected, it makes me want to leave and never come back. And so when we have difficult conversations at UUCA about areas that touch on some people’s marginalized identities, I would like for all of us, and most especially those with privileged identities, to be about ten times more compassionate, patient, kind, respectful, and generous than we think we need to be. What we have to work on as a congregation and as a movement is way too important for us to think we can get away with not learning this lesson. And I am hopeful that we can learn and change. I will leave us with the parting words this summer of our three African-American Interim Co-Presidents of the UUA, Rev Sophia Betancourt, Rev Bill Sinkford and Dr Leon Spencer, who said: “There is a fundamental hope in our values and our aspirations that speaks to persons across the boundaries of race and culture and language and economic circumstance and ability. It is our culture and not our theology that has been our biggest obstacle. And because that is true, our final message is a message of hope. We can change our culture if we have the will to do it.” Peace, Salaam, Shalom and may it be so.