Race, Diagnosis, and Identity
A mother writes about getting a call from the Centers for Disease Control about her daughter’s vaccinations. Her response leads to a pause at the other end of the line: What did she say……some strongly worded statement about a link between vaccines and autism?
What this mother—-who is writer Peggy Orenstein in the March 23rd New York Times magazine—-says to the CDC researcher is this:
“Caucasian and Asian”
It’s Orenstein’s daughter being biracial that stumps the CDC researcher. The title of Orenstein’s essay is Mixed Messenger; her essay is about Barack Obama who, while he has “increasingly positioned himself as a black man,” is “the first biracial candidate.” Noting that the Senator was born in Hawaii, “the most diverse state in the Union,” Orenstein writes about the “rise of multiracialism” and the word “Hapa,” which is “a Hawaiian word meaning ‘half’ that has gone from being a slur against mixed-race Asians to a point of pride — and has increasingly been adopted by multiracials of all kinds on the Mainland.”
Charlie is a Hapa—I’m Chinese-American on both sides, and Jim is Irish American. Occasionally someone, on only seeing me with Charlie, will write down his name as “Charlie Chew.” “That’s my grandfather’s name,” I can’t resist noting when I give Charlie’s actual name, Charlie Fisher—-a name which gives no indication of “what” he is, Hapa, Irish, American, who knows. Charlie was born with a head of black hair and big brown eyes (same as me; he was a few inches longer and about 2 pounds heavier) and it’s always been clear that he’s of Asian heritage. As Orenstein continues:
Race is thrust on Hapas based on the shades of their skin, the shapes of their eyes, their last names. (Quick: What race is Apolo Ohno? How about Meg Tilly? Both are half-Asian.) But ethnicity, an internal sense of culture, place and heritage — that’s more of a choice. Cultivating it in our children could be the difference between a Hapa Nation that’s a rich, variegated brown and one that fades to beige. I know that challenge firsthand. Because we are trying to raise our daughter as bicultural, much in our family is up for grabs, from the food we eat — and what we say before and after eating it — to the holidays we celebrate to whether we call her rear end a tushie or an oshiri.
There’s another “difference” that is frequently applied to Charlie, his being autistic, his being on the autism spectrum. For most of his life, it has seemed that his diagnosis—”autism”—-would have more to do with how people perceive Charlie and how he is understood than his race. Being autistic has had everything to do with Charlie’s education; once upon a time, I had thought, hoped, that he might go to Chinese school (as I had not) and learn Chinese (and I do speak to him sometimes in Mandarin, mostly names of food and things like numbers—Charlie struggles plenty just to remember to say a full sentence in English). Perhaps it might be thought that race and ethnicity really could not play too much of a role for Charlie.
It happens that, of the five boys in Charlie’s class, three are Asian: Charlie and another boy are both Hapa, and a third boy is Chinese. It happens that, the therapists that Charlie has been fondest of were all dark-haired—Philippina, Indian, Chinese. When he was five years old, Charlie had what I guess would have to be considered a major case of puppy love for an Indian girl in his class; he pushed his way in morning circle to sit next to her, stared at her so much that his teacher had to put up a divider so he could do his work, and gave her some of his lunch.
Orenstein ends her essay by noting that “it seems clear that the binary, black-and-white — not to mention black-or-white — days are already behind us.” Further, it’s not only categories like “race” that are not simply “black-and-white,” but also notions like “normal” and “typical”: What does it means to be normal, or average, or (neuro)typical, or weird, or quirky, or strange, or different? Will we ever be able to put the days of “normal or abnormal” behind us?
Tags: asd, asian american, asperger, autism, barack obama, ethnicity, hapa, pdd-nos, Politics, presidential candidates, raceRelated Stories
POSTED IN: Asia, Language, Politics, Race & Ethnicity
23 opinions for Race, Diagnosis, and Identity
abfh
Mar 24, 2008 at 10:26 am
I expect that “autistic” will come to be seen as a cultural identity rather than an abnormality, in much the same way that our current ethnic categories developed.
VAB
Mar 24, 2008 at 11:53 am
The problem is that we are moving towards more differentiation of wiring types, and not less. It is possible that we just love to classify and, as we loose race and class categories, we add new one to compensate.
As for cultural identity, I don’t see how that could be. Culture is something that is passed memetically, not genetically. Just as raising an autistic child in an NT family does not make the child NT, raising an NT child in an autistic family would not make the child autistic.
abfh
Mar 24, 2008 at 12:32 pm
VAB, there is a gay culture, although most gay people were raised by straight parents. There is also a Deaf culture, some of whom have hearing parents. As I see it, a person gains a cultural identity from having an individual affinity with the culture, not just from having been raised in it.
mayfly
Mar 24, 2008 at 12:38 pm
The comment by abfh just underscores the fact that autism is a word without meaning, or just given any meaning which meets a person’s opinion.
If the world were completely without prejudice some people now held back by prejudice would achieve their aspirations, others would find themselves replaced.
If the world were an absolute meritocracy, what would it matter to the low-functioning autistic. Would they suddenly become social, would they become keen to learn?Would they become able to take care of and fend for themselves?
Social acceptance is a huge concern. Finding activities for an autistic child can be challenging especially when that child has no comprehension of what is expected of it in the group. Trying to place that child in an activity designed for NT children, would be like trying to mainstream her at school. She wouldn’t take to it and the other children would have their learning curtailed.
Thank God there are organizations like the church I belong to which runs a program called E*soccer. In about three years it has grown from a handful of children to scores of them, and now local high school students are volunteering to help out with coaching. The children also get buddies usually sons or daughters of church members. My daughter has not taken well to this program, but it is so wonderful, to see other children run off the field with huge smiles reflecting their accomplishments, or a child who has shown no social inclination whatsoever look forward to seeing his coach. It is often chaotic and very rarely does anything such as an organized game occur, but NT and autistic children play together and it is enriching for both.
My daughter simply walks around with a couple of buddies and does not really participate. It does give Mom and Dad a break, and I am always amazed at the great size of the hearts of her buddies. At their age I am ashamed to say, I would have treated children like my daughter as if they were contagious.
Thank goodness for organization which run camps for special needs children especially those which provide for one-on-one aids.
The times have never been better to raise an autistic child and I pray programs such as E-Soccer which promote acceptance will instill it as a life long value.
Even those of us who have low-functioning children are so much better off, than those faced with the same challenges a decade ago.
Kristina Chew, PhD
Mar 24, 2008 at 12:53 pm
@VAB,
but could it be said that parents or people around autistic persons become (whatever this means) “more autistic,” or simply more open about and comfortable with their own differences?
@abfh,
I keep thinking about the application forms for some universities in the UK—-there’s a box one can check with autism/Asperger, in the same way that one now can now check a box indicating one’s race/ethnicity.
@mayfly,
e-soccer sounds like a program we have at our YMCA that partners autistic kids with teenage volunteers—it’s gotten very popular and sometimes there aren’t enough volunteers to go around. Charlie tends to get to swim with a different child each time and it takes a half-hour or so it seems for him to get used to another person’s voice and they to his.
abfh
Mar 24, 2008 at 1:36 pm
Mayfly, the development of an autistic culture (which is already happening to some extent) does not make the word “autism” meaningless or deny the fact of different educational needs. A culture consists of the shared experiences and values of a community of people whose way of life is similar.
Cliff
Mar 24, 2008 at 3:04 pm
The identity of autism is kind of a tricky thing; outside a very poor set of criterion, it’s mentioned as kind of a kind of understood (which can happen and still have significant meaning, a point oft-missed). And even then, to different groups it quite honestly means a different thing.
I’ve argued a bit of different things on the subject (that it should be identified in qualitative terms, that is should(must be) be defined outside a strict physicalist structure, that it should be more singular a term (since I would be considering it qualitative), that it be separated from the individual behaviors and into a more general mindset/tendency frame (tricky business)). At some level, though, I’m jumping the gun by even thinking about it, because as it stands right now autistics have trouble even asserting themselves even at a mainstream level (for quite a number of reasons).
And, no, this isn’t to undermine the educational needs, which are very important. But it shouldn’t be to the point to where autistics aren’t able to develop and protect their rights and identities on some of the “smaller” issues (though that’s really inaccurate, considering some what still passes as acceptable discourse regarding autistics today).
Cliff
VAB
Mar 24, 2008 at 3:20 pm
There can be an autistic culture — though I am not sure there needs to be as most the things that might be included in an autistic culture are already included in liberal intelectual/artistic culture — but even if there were a separate autistic culture I don’t think it would take over as an identity. If it did, I don’t think it would be a good thing. When someone tell me they are gay, I don’t think culture, I think partner preference. The deaf culture may be more tightly knit, but I know for a fact that many gay people do not identify with the the gay culture. Just look at Senator Craig :-)
Cliff
Mar 24, 2008 at 3:39 pm
Identity isn’t by necessity related to a culture, but to say that there isn’t an identity misses the point. There is, almost by necessity, an identity of sorts. What that is, what that should be, and how it relates to other things is what’s at stake, not that it exists.
That does, for what it’s worth, include things such as denial of personal traits, and while that sidesteps a lot of the primary identification, the effects of having done that have other implications in identity in regards to other things. So it’s not nearly that simple.
Cliff
VAB
Mar 24, 2008 at 4:31 pm
“to say that there isn’t an identity misses the point”
Did anyone say anything along those lines? I don’t think I’ve seen that said anywhere.
Cliff
Mar 24, 2008 at 4:47 pm
Wow, I’m sorry, I managed to drop a few necessary pieces for that to make any relevant sense (though, actually, it seems to hold up as an unrelated statement just fine). So, let’s try this again, shall we?
“Identity isn’t by necessity related to a culture, but to say that isn’t a culturally-related identity misses the point. There is, almost by necessity, an identity of sorts (as it relates to the culture). What it is, what that should be, and how it relates to other things is what’s at stake, not that it exists.”
So, basically, while there isn’t a subsuming cultural identity per se so that it is a dependent relationship, they both effect each other to different degrees that it is hard to simply met out the two as separate.
Cliff
Regan
Mar 24, 2008 at 5:16 pm
Maybe it’s me but would it depend on the breadth of the culture and the identity that the individual chooses to most closely associate with?
I have many different “subcultures” that I could be said to belong to but in the whole I would not say that any single one defines me in toto, and even if the “culture” did so, on an individual basis I might choose (assuming choice is an allowable parameter) to reject or accept some, all or none of those definitions. In the case of “none”, would one be rejecting a culture or making a personal choice?
Not an argument, just a question.
VAB
Mar 24, 2008 at 5:19 pm
Ah, I see. Kind of. I’m not sure if, when you say “culturally-related” you mean, as defined by the general culture in which autistics live, or as defined by a subculture of autistic people and the people close to them. That identity is related to the former goes without saying. But I’m pretty sure that the abfh was referring to the latter. I think that’s very much in flux at the moment. Twenty years ago I’m not sure it could have been said to exist. It kind of exists now. Whether or not it is going to develop to the extent that the greater culture sees the word “autistic” primarily as referring to this subculture is yet to be seen.
I think I would be happier if the world came to see being autistic as a trait, like being blond or extroverted or gay (the way I see gay).
abfh
Mar 24, 2008 at 6:35 pm
Yes, I was referring to a subculture of autistic people and the people close to them. And I agree with your point that autism might also be seen as a trait, as there would be some autistics who did not choose to identify with the autistic culture, or who did not identify strongly with it.
Cliff
Mar 24, 2008 at 6:57 pm
I’m actually referring to both, in their own way. I mean, a lot of how people define themselves within certain structures (race, gender) depends highly on the social circumstances with are largely inseparable from those microcosms. So, in other words, it’s hard to separate “gay” from the larger cultural perspective of gays, and it implies some of the so-called infra politics in which these micro cultures exist. So, to some degree, the personal identity kind of gets wrapped up in the whole picture, and so while it is quite distinct and independent of the two, it influences and is influenced by it. So while an autistic culture doesn’t “take over” as an identity, so long as it has an acknowledged existence that the relation of the person to that culture does have a difference, at least in so far as it is hard to escape the general assumptions of the culture.
Now, as Regan points out, does that mean wholesale denial? No. But it can, which creates certain other kinds of constructions and contradictions that come in its place. But it can also be a simply recognition of disagreement, which implies you have invested your identity in something as distinct from the construction held by that culture in general, creating the distinction and relationship on which an identity is created.
I would argue, interestingly, that not only should autistic be a trait, but that it should be a more flexible one based on individual tendencies rather than as prescriptive of individuals in general. I know some people aren’t going to agree with that, and I would love to put it into more context, but I have to be somewhere in five minutes and, as fast as I’m typing, I’d be late if I went through all of that. Also have other things I didn’t get to, but I’ll get to that when I get back…
Cliff
Kristina Chew, PhD
Mar 24, 2008 at 10:17 pm
Just a thought experiment: What if things got to the point where people tried to “pass” as autistic…….
Club 166
Mar 24, 2008 at 10:20 pm
For us (for now, anyways) autism trumps issues of race or adoption for Buddy Boy. Dealing with a system that is inadequate to accommodate him involves much more energy than anything else in our lives. I wrote a post about it here.
Joe
Cliff
Mar 24, 2008 at 11:05 pm
Interesting point. Honestly, I don’t know why anyone would try to be “autistic” outside of a material motivation, but then again the ultimate motivation for that kind of behavior would be tough. Now, how that would have to happen and what it means for the larger autistic identity is interesting, and will (in the next hour, at least) turn into a post on my site. Basically, though, it’ll be too tough to do but for the best, thanks to autism being related not to direct specific behaviors (as is often categorized) but to an entire mindset.
Cliff
Marla
Mar 25, 2008 at 12:13 am
I just got done reading and commenting on Joe’s post Club 166. You both are raising an important topic. M is Hispanic. I must say that her health issues have been our first and foremost concern. But, adoption and race are also something we want her to have some insight into. We talk about both with her, especially when we tell her about her birth story.
I really hope there are more posts on this topic.
I would like to think race is becoming less of an issue but I don’t see that as the case. I do think there is more discrimination against children with disabilities as well, not less. I wrote more about that on Club 166. I remember when we went through our adoption counseling to wait for a black child we were told black and bi racial children were considered special needs. Now, I see that very differently since we have a special needs child. I certainly don’t see our friends that have adopted bi racial going through anything close to the struggles and discrimination that we have experienced. Possibly this will become more difficult as their children reach the teenage years?
Very good post Kristina. Your posts always get me thinking and I appreciate that.
Kristina Chew, PhD
Mar 25, 2008 at 1:05 am
Thanks Marla and Club166—-Marla, this line really struck me:
‘I remember when we went through our adoption counseling to wait for a black child we were told black and bi racial children were considered special needs.”
I had to read that twice to digest it.
Kristina Chew, PhD
Mar 25, 2008 at 1:11 am
And here is Cliff’s post on Playacting and Identity.
Regan
Mar 25, 2008 at 6:20 pm
Sidebar.
I don’t fill out those little boxes, usually because it says “optional” (although when you don’t, you find out how really “optional” it is), or else check “other” which is unappealing because I am “Hapa” and both ethnicities are meaningful to me. I’d prefer no little boxes, actually, since that might indicate that they are no longer needed.
Where race is an issue is in the distribution of services…I think the Autism Diva in a past post pointed out the inequities of diagnostic availability and access to services depending on race and demographics, and I think it was done on this blog as well, so while some might argue that the autistic culture considerations trump those, I might suggest that race does matter as a variable. We are not quite as enlightened/color-blind as we could be (or so I read in the papers and so those little boxes seem to indicate).
Does Your Child Know She or He is Autistic?
Mar 26, 2008 at 5:53 pm
[…] haven’t yet had any kind of formal talk with Charlie about “what he is” or “what he has” or “what he’s diagnosed with.” Certainly the […]
Have an opinion? Leave a comment: