“Reflections on Access Sunday”

Hikaru Peterson:

I’m here, on behalf of Shari DeZelar and myself, to share about “person-first language.” What do we mean by “person-first language”? According to Wikipedia:

People-first . . . [or] person-first language . . . is a type of linguistic prescription which puts a person before a diagnosis, describing what a person “has” rather than asserting what a person “is.” It is intended to avoid marginalization or dehumanization (either consciously or subconsciously) when discussing people with a chronic illness or disability.

The basic idea is to acknowledge the person for who they are and not to have the disability or condition define the person. In person-first language, you would refer to Kaia as “a girl with Down syndrome” or “ a girl who has Down syndrome” rather than “a Down-syndrome girl” or what I hear a lot “a Down’s.” John Langdon Down was a physician, who formally described individuals with the syndrome in the late nineteenth century; Kaia definitely is not related to him or belongs to him.

I first encountered the concept of person-first language when we found out that we were expecting a baby girl with Down syndrome and searched for information on the Internet. I remember that soon after, I heard Nina Totenberg on NPR using the phrase “Down-syndrome children” and emailed NPR to complain.

I had an opportunity to profoundly think about person-first language several years ago, when I was involved in translating a book for siblings of individuals with Down syndrome titled Fasten Your Seatbelt: A Crash Course on Down Syndrome for Brothers and Sisters, by Brian Skotko and Susan Levine, into Japanese. We went back and forth wanting to make sure that nothing was lost in translation. The first item we vigorously discussed was how to translate the English phrase “a person with Down syndrome.” We initially translated it as ダウン症をもつ人 “a person who has Down syndrome” but the Japanese word for “have”もつ gives a nuance of intentional possession, which does not fit. So we ended up with ダウン症のある人, which feels more awkward in Japanese but aligns more closely with the person-first principle.

Why is person-first language important? Because it hurts when someone refers to Kaia in a non-person-first way. Kaia goes to a Roseville Area school’s Setting 3 program, which means that she spends 60% of her time at school in special education and 40% in a general education setting. The program was then called the ISHINE program, which stood for some acronym. Two years ago when Kaia was starting third grade, I overheard a parent with a child in Eirik’s grade talking to another parent about her daughter being in the third grade general classroom that Kaia was in. So, I butted myself into the conversation saying that Kaia must be in her daughter’s classroom. And the mother said “Oh, yes. Chloe mentioned that there is an ISHINE in her classroom.” I told her “I hope your daughter knows that the ISHINE student’s name is Kaia.” and I can see that I embarrassed the mother.

So, person-first language is inclusive and thoughtful. But the tricky part is that it is not always inclusive and thoughtful! Some folks embrace their condition as their identity and prefer that others use identity-first language when referring to them. This is particularly true for some adult individuals with autism. They prefer to be called autistic, especially those who have embraced neurodiversity as positive. According to a blog site of autistic individuals advocating for identity-first language, parents of autistic children generally prefer person-first language so their children are referred to as “persons with autism.” Kaia has dual diagnosis of Down syndrome and autism. Thanks to those identity-first advocates, I don’t find it offensive if someone refers to Kaia as being autistic.

In conclusion, all this distinction between person-first versus identity-first is no different from our preferences for pronouns. The best practice is to follow the lead of the person with the disability (or in some cases their family member) for the appropriate language to use. What’s most important is for us to be open and willing to learn and keep trying if we get it wrong.

Chet Tschetter:

Last winter I went to the gym. I was all bundled up in my big puffy coat and stocking cap, which in Tennessee they call a Toboggan. As I entered the women’s locker room, a girl was walking out. She looked to me to be about 11 or 12 years old. She looked at me. She gave me “the look.” The look that I get when some women see me in the women’s locker room or bathroom. When I am sure they are think I am a guy, and I don’t belong. I usually don’t say anything, but this time I locked eyes and I could read her face. To me it read “You don’t belong in here.” I said “It’s okay, I’m a girl.” She stepped aside, and in one of the most diverse YWCAs in the state and I went in feeling like I didn’t belong. I felt as if I needed to go use the “Other” to get ready for my workout. This example gives me insight, gives me that “Ah-ha moment” of what is like for others who get “the look” not to mention sometimes hurtful comments because they “look” a certain way.

You have just heard many stories. Each of these stories is about people feeling like they “belong or don’t belong” in places in their own community, places they go to on a day-to-day basis.  Places they have every right to be at and be a part of. The sense of belonging or the sense of being treated as if you don’t belong is a social justice issue. One of the things I love about this church is that we not only talk about social justice issues, we also do something about it.

The Inclusion Infusion team first met last April. As we started our journey together we determined what our goals and mission were. It didn’t take us long to land on what victory will look like: we want all people “to feel as if they aren’t just included at First Church, but that they belong, really belong.”

Today isn’t the first day that this church cares about inclusion for people who have been marginalized, who may receive services or who need some extra support. This church has been caring about it and doing things about it for years. For example, having the bulletins in large print, having ear buds for listening, an elevator, being opened minded, friendly and supportive to those with have been marginalized. But if you think we are doing everything we can, then I challenge you to keep an open mind and open heart as we work and learn together. I have worked in this field professionally my whole life and I am constantly learning about how to do things better. Today is the kick-off of how we intentionally work together to help individuals who receive services or who need some extra support feel as if they belong, really belong.