R.E.S.P.E.C.T.

My thesis project in graduate school involved a survey of Deaf adults. One of my thesis advisors was Deaf and explained some key things about Deaf culture to me. People who consider themselves culturally Deaf capitalize the word “Deaf” when referring to their community and community members. The words “deaf” (uncapitalized) and “hard of hearing” are used to describe different levels of hearing people have. I had no idea how important these distinctions were to the Deaf community until he explained all this to me.

We filmed an introduction to my survey in American Sign Language (ASL). I started by introducing myself in ASL, and then spoke the rest of the introduction with an ASL interpreter at my side. I normally move my hands quite a bit when I speak, but I pinned them to my side while I was speaking for the majority of this video. I explained to the interpreter that I was afraid of accidentally saying something offensive with my hands that I didn’t intend to. She laughed and said that wouldn’t happen with just my normal mannerisms.

Even with my advisor guiding me, and with trying to be extra careful to not offend in this unfamiliar culture, I still goofed. I called a Deaf person a “patient” in front of my advisor. He gently explained that, as a Deaf person, he would take offense to being called a “patient” on the basis of his Deafness, as he doesn’t see it as a problem to be fixed. He sees it as a part of his identity and culture. He is not a “patient” unless he is seeking treatment for an illness. I apologized and explained that I did not intend that word in a negative way— I’ve had many healthy pregnant people who I’ve referred to as “patients,” who had nothing wrong with them either. I then apologized again and stopped using that word when referring to Deaf people.

This isn’t the first time I’ve encountered an unfamiliar culture. I am a white person who was raised in a town that is 80% Latino. I was raised in a non-Christian religion in a town with a church on every corner. So even though I was raised white in the US, I did not grow up with a sense that my family and culture were the “default” like many white children do. I was taught that diversity is beautiful and to be celebrated. I was taught about different cultures, religions, foods, music and languages with an “isn’t this amazing?” kind of attitude. The more colorful a garden, the more beautiful it is— we humans make a beautifully diverse garden.

The genetic counseling community looks more like a monochrome garden at the moment. We have known this for a long time. We are finally asking ourselves why we don’t reflect the demographics of the US more closely. The list of reasons why is long. It’s financial, it’s cultural, it’s historical, and it’s self-perpetuating. People don’t usually flock to groups that they don’t identify with.

The Minority Genetics Professionals Network tweeted a quote from the NSGC Exeter report on Diversity, Equity, Inclusion, and Justice. One of the survey participants said,

“I believe all this emphasis on diversity actually divides us… Some of us have common sense and inherent respect for others without having to check our white privilege.”

This is a sentiment I have heard before, but has always baffled me. Why does talking about our differences feel divisive to you? Is it because you’ve been raised with the idea of American Exceptionalism? That we (White Americans) do things a certain way because it is the best way, and everyone else in the world wants to come here because of it? So when something deviates from that ingrained norm, it must be less-than? Does it make you uncomfortable to have your way of doing things questioned? Why does “different” have a negative connotation for you?

I often hear, “Just treat everyone with respect,” as if “respect” is a universal norm that everyone understands (exhibit A: the quote above). I thought I was being respectful when I referred to a Deaf man as a “patient.” I was educated as to why I was not, and I stopped. I thought I was being respectful when I pinned my arms to my side during my video. I was told that was not necessary. It is not respectful to take my shoes off in my Mexican husband’s family home; it is not respectful to keep my shoes on in my Persian friend’s home. We cannot show people respect without understanding what they find to be respectful. We cannot learn what people find respectful without talking about our differences. We cannot talk about differences if we become defensive when the subject is raised.

Most people in the US who are of non-dominant cultures understand what white people find to be respectful. It is taught in school, in the media, on the job. There’s even a term for using white-cultural norms instead of your own when needed: “code-switching.” As someone who used to spend the majority of my working day speaking in my second language, I know how flat-out exhausting it can be to have to actively think about everything I’m saying, and to pronounce words in a way my mouth is not used to. I have the privilege of not being chastised for switching back to my dominant language in-between counseling sessions, and while existing in the rest of the world. To expect others to automatically know and use your cultural norms of respect, but to not take the time to understand what they find respectful, is a (white) privilege.

Guess what? Even when we try, we’re going to get it wrong sometimes. We’re going to goof. We’re going to offend. There are too many cultures, too many sub-cultures, too many individual humans to fully understand every single one! This work can never be “finished”— it is a mind-set of openness, learning, and inclusion that needs to be fostered forever. But the the micro- and macro-aggressions, goofs and offenses, will happen less often, and will be less hurtful, if we approach others with a sense of earnest humility. We all have blindspots, and the sooner we acknowledge that blindspots are real, the sooner we can identify where they are and fix them. If I don’t admit I lack knowledge, then why would I ever seek to learn?

If you are a genetic counselor in the US, I urge you to go to https://www.nsgc.org/JEDI to read and comment on the NSGC Exeter report on Diversity, Equity, Inclusion, and Justice. The comment period period will be open until June 9, 2021.