Rhetorical fault lines, part 1

I’m reflecting on two situations developing in my intellectual circles right now, one that has been on-going for a few months, and the other that just exploded in the past few days.  On the surface, these situations may seem to have little in common, and maybe my overstimulated brain is making more of the connections than it should. But to me, both of these situations come down to one common denominator: folks in power speaking for / over folks not in power. And in both cases, when the “powerful” have been called out, they have doubled down, believing earnestly that since they are “helping” the “powerless ” and are “doing good,” no one has the right to question their motives or their rhetoric.

Before this gets insufferably vague, let me explain: this is essentially a story about language and power. It is about who is allowed to speak, what they are allowed to say, and under what circumstances. And this is long, so I’ll relegate Situation #2, a recent kerfuffle involving a blog post on Musicology Now (the blog mouthpiece of the American Musicological Society), to a second essay.

Situation #1: I’m enrolled in a year-long intensive training to become a Special Education Advocate. The people teaching the class are attorneys and advocates who have been in the business for many years. They know their stuff, and they care deeply about the kids they serve. These are people who truly want to do good in the world. They work every day to ensure that disabled students are protected under the law and are afforded all the necessary accommodations and modifications within K-12 educational settings. So let me be clear that I do not fault their motives. These teachers, and my fellow classmates, are clearly doing a good thing.

But on the first day of class, one of the attorneys who is a frequent guest teacher gave us a mini-lecture about using person-first language rather than identity-first language. As in, we were exhorted to say / write “person with autism,” rather than “Autistic person.” Throughout the class, person-first language has been the baseline. On our class Facebook page–which I recently left–there were multiple skirmishes over this issue. Those few of us who insist on identity-first language are not backing down, and we face censure in the class each time we use identity first language. Those who insist on person-first language are also not backing down. (In anticipation of readers who who might think I’ve jumped ship into very deep “politically-correct” waters, let me offer a surprise: person-first language is what’s currently accepted as politically correct, not identity-first language. For reference, see this handy guide from VAS Arts of Rhode Island.)

Why is this issue, this little twist of words, so important, you might ask? Professionals (such as doctors, school districts, and even the American Psychological Association) advocate for the use of person-first language. The idea is that by saying “person with autism” we are not reducing a person to their disability. The phrase “Autistic” person, they argue, puts the person’s disability first, and reduces our understanding of the person to only his/her disability. And supposedly this type of descriptive labeling also helps others learn / practice tolerance, because “person with autism” reminds us that the person is…well…a person.  (Talk amongst yourselves: do you forget that a person is a person when you hear that s/he is Blind or Autistic or Deaf or otherwise disabled? Maybe it’s just me, but if that’s really happening–if as a society we can’t remember that we’re dealing with a person unless we say “a person with X”–then we have bigger problems.)

A big red flag for me: Autism Speaks–an organization I’ve argued against before–advocates for person-first language. In this pamphlet, for example, AS argues: “Remember: a disability descriptor is simply a medical diagnosis; People First Language respectfully puts the person before the disability; and a person with a disability is more like people without disabilities than different!” Ok, so if we buy this at face value: (1) disabilities are just medical diagnoses, and (2) a disabled person is only more like other people if their disability is not recognized as an intrinsic part of who they are. I’m restraining myself from going into all the reasons why these two points are so problematic. Eyes on the prize; let’s move forward.

So we have private organizations and government bodies that insist on person-first language. (One of my classmates told our group that in the state where she practices, all documents–such as complaints–that are submitted to state agencies MUST use person-first language or they will be rejected.) Many (but not all, it’s true) disability rights activists, however, disagree, and insist on identity-first language. So, the preference here is to say “Autistic person” or “Deaf person,” rather than “person with Autism,” or “person with deafness,” or “person with hearing impairments.” Why? Let me use examples from the Autistic community, simply because that’s what I know best. Autistic activists argue that one’s self cannot be separated from one’s Autism. Autism isn’t a bag that is carried around, or a thing to be cast off (can a “person with Autism” ever be a “person without Autism”? Nope.) To bring the issue of who prefers what kind of language into stark relief here, let me quote Lydia Brown’s essay “Identity-First Language” published on the Autistic Self-Advocacy Network’s site:

“In the autism community, many self-advocates and their allies prefer terminology such as “Autistic,” “Autistic person,” or “Autistic individual” because we understand autism as an inherent part of an individual’s identity — the same way one refers to “Muslims,” “African-Americans,” “Lesbian/Gay/Bisexual/Transgender/Queer,” “Chinese,” “gifted,” “athletic,” or “Jewish.” On the other hand, many parents of Autistic people and professionals who work with Autistic people prefer terminology such as “person with autism,” “people with autism,” or “individual with ASD” because they do not consider autism to be part of an individual’s identity and do not want their children to be identified or referred to as “Autistic.” They want “person-first language,” that puts “person” before any identifier such as “autism,” in order to emphasize the humanity of their children.”

Ok, note the difference here: parentand professionals need to remember that the children or adults they work with are human. They don’t want to think of their children or clients as disabled, because within the context of medicine, disabled = broken. If we separate the “autistic” from the “person,” then we can start thinking of the “autistic” as something outside of the condition of personhood, a broken part of that person that doesn’t belong, a broken part that can perhaps be fixed. (And here I would refer you to the many quack theory attempts to “cure” autism. Once we decide a person is broken–even if we manage to remember that said person is a person because we’ve dutifully used person-first language–the next step is to fix them, right?) But as Brown notes, Autistic self-advocates and allies prefer identity-first language. Why? Because Autism is not seen as something that is a broken part of a person.

Autistic individuals who prefer identity-first language (and it’s important to say that not all activists agree about this) see autism as an intrinsic part of their being and selves. If you want to read more about this perspective, read this by Jim Sinclair; this by Cara Liebowitz; this–another essay by Lydia Brown;  this from the National Federation of the Blind; this by Kassiane Sibley; this by Julia Bascom, or even this by Judy Endow, which takes a middle-ground approach. There’s also this very informative page about language from the Disability Cultural Center at Syracuse University. (And for the record, some government studies have shown that person-first language isn’t really promoting tolerance at all. This Canadian study, for example, concludes that person-first language is “not really about sensitivity…It’s about: This is just the way it’s done.”)

None of this is news to anyone who keeps up with Disability Rights. But for purposes of my overarching theme, here’s an important element of this debate to keep in mind: disability rights activists tend to be actually disabled people. (There’s a great hashtag, #ActuallyAutistic, that circulates with frequency on Facebook and Twitter, to call attention to the poster’s identity: as an #ActuallyAutistic person, the poster should have credibility when talking about Autism, no? In practice, however, Autistic voices are silenced enough that this hashtag has become necessary.) Conversely, promoters of person-first language are not necessarily disabled (there could be disabled folks among the ranks, but it’s hard to know because it tends to be larger organizations and government bodies doing the promoting). So on the one hand we have actual, real people, advocating for their right to define themselves, and on the other hand, we have government and private organizations–helped by educational and legal training–advocating for telling disabled people how they should be defined.

In my class a minority of us have been arguing that we prefer to use identity-first language because we’re following the practices of Disability Rights activists. Some of us in this small group are disabled. Our use of language has been censured by other students, who insist on person-first language because (1) they’ve been told to do so and (2) they really do believe that person-first language promotes respect for disabled people. We’ve got a clear fault line here, one we can’t seem to get past because each side thinks it has the right answer. But for me the right choice has to do with respecting the preferences of the population in question.

And herein lies the conundrum: if you think you are doing a good thing for disabled people, and you are actually out there doing good work, at what point should you actually listen to the disabled people you represent and respect their wishes? At what point should you stop telling disabled people how they should define themselves and their relationship to their own disabilities? At what point do you recognize that when you are a member of the majority group and you talk over / for a minority group, you are effectively silencing the people you claim to want to help?

Because listening to disabled people and honoring their preferences isn’t about being “politically correct.” Not listening and not honoring preferences is, however, a form of microaggression, a term I’ll have to unpack in my next entry.

To be continued…



9 thoughts on “Rhetorical fault lines, part 1

    • There has been no response. We never get that far. Taking an identity-first stance has serious repercussions. We’re pariahs in the advocacy community. That may change. I hope it does.

  1. In a previous job, I was actually reprimanded several times for using identity-first language even when I explained why I use it. I also explained that my scholarship and ethnographic research is within Deaf and disability studies and that I have experience teaching and presenting on the subjects. I am part of these communities, but that wasn’t enough for them. The people who reprimanded me had no experience working with disabled folks and we’re just following “protocal.” It was incredibly frustrating explaining myself and my work to the person in charge of access and accommodation. She had no clue what was the purpose of her position and no signs of reaching out to disabled people. She was given that position (it wasn’t her full time gig at the job) because she worked at this employer for a long time. It was merely a title position so the employer can show they had a person in charge of acccess.

  2. Two quick anecdotes related to both the climate of AMS and the identity first language:

    1. I have a former musicology colleague who is rather a star in the field. He has a huge heart, but he is also blind to his status and privilege. I remember posting something on Facebook about having to work up enough energy for the “blood sport” of AMS and he schooled me publicly for being a whiner who is just perpetuating a myth about the society. Of course the society has changed in his eyes because he became one of the insiders. I’m still an outsider. He doesn’t see that.

    2) An elder-stateswoman and composer reprimanded me for using identity first language to describe the disabled children I had been working with in Colorado. Her point was also driven by a huge sympathy for the community, claiming that the disability did not define the child. It was a horrible encounter with someone that I admire greatly. In the end her scolding only changed my willingness to talk about my experiences making music with children of all abilities/disabilities.

  3. I have to wonder if there’s danger in saying “this is what disabled people want”. Are we to believe that there is such cohesion of thought among disabled people that they all want this? I happen to believe there is significant diversity among the disabled community. Isn’t it simply possible that a few loud voices are saying this right now, until the next wave of loud voices comes along to say the opposite?

    I am not autistic and I don’t have a strong belief either way. But it doesn’t really matter what I believe anyway. I have chosen to use both methods of reference, interchangeably in most cases (especially when in mixed company or large groups). But when I work with individuals or families I try to match their language. Each person deserves the respect of being referred to in the way in which they prefer.

    I also like to point out that the very first person I heard advocate for people-first language was Temple Grandin at a conference keynote. Diversity of thought should be celebrated.

    • I agree with you that there is significant diversity within the Disabled community. I’m also with you that not everyone agrees about this. In fact, my precise words were “Many (but not all, it’s true) disability rights activists, however, disagree, and insist on identity-first language.” Also, please note that I really focused on the Autistic community, since (again, as I pointed out), that’s what I know best. As for Temple Grandin: she has done great things, but she’s only one Autistic voice (or person with autism with a voice, if she prefers). Her words may be loud and oft-repeated, but they don’t represent everyone.

      Anyway, kudos to you for being flexible about preferences. I think that’s key. But I don’t see enough people actually listening to subaltern voices in these kinds of debates of who gets to speak and choose (and they go beyond the disability community; I’ll write my follow-up at some point). Diversity of thought SHOULD be celebrated, as you say, but my reflection is about moments when people who are “represented” are ignored.

      • As a person who had a wide variety of mental illness diagnoses, I do prefer not to be referred to as “a Bi-polar” partly because every time I see a new press river, I get a handful of new diagnoses. I do believe that if someone has expressed a preference for identity first language, it is rude and dis empowering for someone to reprimand the person who is proudly describing their disability as a part of who they are. I think as long as the person’s personal choice is respected, we are good.

    • Cd, that is a good question. This is a debate that has been ongoing in the Autistic community and it has been polled several times. These surveys have consistently come out as follows: A majority of those on the spectrum (those with any of the diagnosis in the Autism group of disorders) consistently prefer either Identity first or in some polls use both person-first and identity-first language interchangeably, and a majority of responders w/o a diagnoses prefer person first. The Autistic group also rejects the idea that people should tell them how they can identify, and abbreviated terms like Aspie and Autie are also widely used. These polls are available on several of our facebook groups, wrongplanet, the Autistic self advocacy networked, and many other online blogs and forums. (Feel free to look them up.)There was even an official survey done by a university but I can’t remember which one. It was small in number but more official in how it was run, yet it got the same results: Those with ASDs: identity first or interchangeable, Those without ASDs: person first. Ironically however for a survey on how to identify a disability the group without said disability was twice as large as the group living with the disability but that is another issue. Thus, for the Autistic community itself the default language is identity first language (the majority preference) unless the individual prefers otherwise, than you use whichever language they prefer when speaking to or about them specifically.

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