A Place To Belong for a Hapa Child With Down Syndrome
July 26, 2015 is the 25th anniversary of the Americans with Disabilities Act. We are taking this opportunity to share the stories of two Asian Pacific Americans within the disability community. Jisun Lee is the blogger at Kimchi Latkes, where she writes about parenting her biracial family, which includes three daughters and a son with Down Syndrome.
Jisun Lee’s son meets another hapa child with Down syndrome. Their mothers met online through Lee’s blog, Kimchi Latkes.
What does it mean to be seen? To belong?
People ask me how I feel about having biracial, multiethnic kids. My husband’s mother is Jewish, his father is Swedish. I’m Korean. As a first generation immigrant, I’m familiar with the feeling of straddling two worlds. I feel the push and pull of both my Asian and American sides, never completely belonging in any one community. So when asked about the kids being biracial, I’d usually shrug and repeat my boilerplate answer—the kids would figure it out and I’d be there for support.
I looked at the overwhelmingly white faces on the Facebook pages, blogs, and organizations in the Down syndrome community and I wondered: Will my child belong here?
When my third child came into the world with Down syndrome, things suddenly felt complicated. My son’s diagnosis experience was unique in that we, not a doctor, first suspected that he had Down syndrome. After I had my first inkling that something unusual was afoot, I spent hours looking at children with Down syndrome online, trying to determine whether or not my hunch was right. I honestly couldn’t tell. Nearly every picture I found online was of white children. I Googled every configuration of words I could come up with, and nothing helped. I wondered why he seemed like the only biracial, disabled kid around. (He wasn’t, of course.)
I had resisted social media until the bitter end. Well, being in my thirties doesn’t constitute anything bitter or ending. Still, I was that person, irrationally proud for having stayed out so long.
Enter, Facebook. I’ll let you decide whether to play joyous or ominous music in your head.
Social media gave me insta-community. Suddenly, thousands and thousands of families were saying “me too.” And yet, I couldn’t help the creeping sense of loneliness that came when I looked at the overwhelmingly white faces on the Facebook pages, blogs, and organizations in the Down syndrome community and I wondered: Will my child belong here? If he wants to talk about race and disability, where will he go?
I once met a mother who told me that until she had her daughter, she didn’t truly believe that Down syndrome happened to people of color.
Due to different termination rates between racial and ethnic groups, and perhaps increased immigration, the Down syndrome community might actually be less white than the general population. Yet, what we see doesn’t reflect that reality. While as a general matter white Americans get disproportionate positive representation in comparison to their non-white peers, this phenomenon seems especially so when looking at groups of overlapping, marginalized identities.
I once met a mother who told me that until she had her daughter, she didn’t truly believe that Down syndrome happened to people of color. She knew that factually, Down syndrome could theoretically happen to anyone. Yet, her heart couldn’t reconcile the difference between what she knew and what she actually saw. Or rather, what she didn’t see. We both agreed that when we looked online for images and stories of children and adults with Down syndrome, we found overwhelmingly white, upper-middle class stories.
I’ve had people ask me why I blog and stay on social media, even though the process sometimes frazzles my nerves–and feelings–to a crisp. Certainly, there’s no dearth of blogs written by parents raising a child with a disability. Furthermore, the disability community regards the parent voice with valid frustration; it is a tricky thing to discuss identity that isn’t yours. I try to stick to my experience as a parent, but I don’t always get it right.
When we looked online for images and stories of children and adults with Down syndrome, we found overwhelmingly white, upper-middle class stories.
The first friend I made online was a mother who noticed my blog name, Kimchi Latkes. She told me she was half Korean and we realized our sons with Down syndrome were the same age. When I saw pictures her son, I teared up. I hadn’t realized how much I needed to see a face with similar contours as my son’s. Our kids had the same coloring, the same something between the eyes that people with Down syndrome seem to share.
Despite the fact that I write about my experiences raising a child with a disability far more than my experiences raising biracial children, being a mixed race family is a large part of what drives me to continue. I know there are parents, Googling “Asian Down syndrome” and “hapa kid Down syndrome” trying to make sense of a new diagnosis. I want other families to feel that relief when they realize that there are, indeed, other families just like them.
After being friends for two years online, I met that mother for the first time this week. I looked at our sons sitting next to each other with their other playmates and wondered if they’d be friends as adults. Maybe they’d never talk about race. I don’t care; I just want them to have the choice to do it with someone who has walked a similar path. I thought, this is what it means to be truly seen. It is beyond just being physically visible. Being truly seen is the beginning of belonging.
If you enjoyed this post, read Alice Wong’s post “Not a Unicorn: Finding Communities within a Community.”
[hr]Jisun Lee has three daughters, one son, seven chickens, four fish, and one amazing husband. She loves knitting, mashed potatoes, flip flops, and a good debate. Jisun blogs at Kimchi Latkes about parenting, disability, and whatever else strikes her fancy.
As we progress as a society, I hope this will become less of an issue. As a person somewhat similarly situated (my children are half Native Alaskan, half non-native) I have experienced this feeling of not really fitting either way more than once. Sometimes I may have been overthinking, but the most graphic event sticks with me, 28 years later. My son with Down syndrome was born with multiple medical conditions that required hospitalization at birth and through the first year. As that year progressed, my son’s skin grew “browner” and his hair grew in, black and shiny and beautiful. He grew increasingly “native-looking.” When he was 9 months old, I experienced something jolting…..a hospital worker made the assumption that I, a definitely white-looking woman, must be his foster mother. It took me by surprise. But it wasn’t long before this manifestation repeated itself.
The second glaring thing was in regard to health care. Alaskan Natives have treaty rights for health care. There is a special system open to them, and them only. Not surprisingly, there is a lessening of care options, pharmaceutical options, developmental assistance (I won’t go into that.). As an insured white person accustomed to a wider spectrum of services, I wanted the best of whatever was available. In most situations where provider care was indicated, the assumption was made that we would “go” into the Indian Health Service for “free” care. Because my baby was brown. I wanted to access the “best” systems of care for my child. This desire was repeatedly not recognized. Because I was white. “All natives go to IHS and other race based services” was the default position. I hit this wall repeatedly because kids with disabilities need access to systems of care that are often race-based. Vocational services were offered through a tribal program without thinking, when the more successful, better option was a state system that provided supports with better outcomes. I wanted my kid in this system. But we were funneled to the tribal program until I made a BIG fuss. Why should we go to the Tribal option when the services were less effective with poorer outcomes, when the state system was better? I wanted the best. I had to fight the presumption that there was no choice to be made. After all, he WAS a native Alaskan. Only his mother was white. Make that birth mother. Yes, race is a problem in disability world.
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