20 August 2011

Self-Advocates: Parents Are Not (Always) Our Enemies

After reading conversations in the comments on blog posts or news articles, or even on posts on social networking sites like Facebook and Twitter, it is very easy for self-advocates to assume that all (or at least most) non-Autistic parents of Autistic children are our enemies. After all, most people who want to cure Autism are parents; most people who claim that "high-functioning people with Asperger's" aren't really Autistic; most people who claim that all self-advocates are in fact "high-functioning people with Asperger's" (which isn't true); most people who want research to focus on curing Autistic children; and most people who loathe the word "Autistic" and much prefer "person with Autism..." Well, most (but certainly not all) of these people, or at least the most vocal among them, are the non-Autistic parents of Autistic children.

The vitriolic fights between self-advocates and parents can be found quite easily anywhere on the internet -- and occasionally, in person as well. There was, actually, a very nasty email exchange quite full of ad hominems and personal attacks about two weeks ago among some of the members of my subcommittee along those lines. (I did not add fuel to the fire, for the record.) Parents get furious with self-advocates for presuming to understand their children; self-advocates get furious with parents for completely misunderstanding the entire nature of Autism. Parents make us out to be the villains; self-advocates make out parents to be the villains.

This in mind, it never ceases to surprise and excite me when I actually encounter parents who agree with any or all of the issues most important to Autistic self-advocates. Last week, I had a wonderful conversation with the non-Autistic mother of a young Autistic son. Her son is non-speaking and has some difficult, destructive behaviors. According to her, he regressed with Applied Behavioral Analysis (ABA), but is doing very well with the TEACCH program.

This woman told me how she eschews the phrase "person with Autism." "My son does not have Autism," she said, "he is Autistic. Autism is a part of him. It's part of his personality. I love him the way he is. Other parents don't get it." She told me that she doesn't want to cure her son. "I'm so inspired by you -- by Autistic adults who I read on the internet. I'm fascinated by you. I wish other parents would understand that my son, their children, are going to grow up to be you, Lydia. They're going to grow up to be Ari [Ne'eman.]"

"Parents think, I got a good placement for my child, I don't want to rock the boat. No, sorry, I can't help you," she said to me. "But what happens to one child affects all of our children. We have to treat it like a civil rights issue." Now that piqued my interest, because the self-advocacy and neurodiversity movements treat our advocacy with the civil rights model as opposed to a medical model. It was strange and yet reassuring to hear this from a parent!

Not only is this woman not Autistic, but her son is what most people would call "low-functioning" or "severely Autistic." She fits the profile perfectly of so many parents who viciously attack the self-advocacy movement. Yet she shares in many of our goals and beliefs. So yes, the mythical parent allies of self-advocates do in fact exist. Let's remember this before accusing all parents of being our enemies.

12 August 2011

Legislative Update: Autism Training Bill

A conversation with staff in Senator Jim Timilty's office two weeks ago revealed that the House Co-Chair, Representative Harold Naughton, has been out of the country on active duty throughout July (and perhaps in June as well.) At least, that's the impression I got from the conversation, which also noted that several Members are missing at any given time while serving in the armed forces. I was told that action probably will not happen until sometime in September, so we are keeping are fingers crossed--and those letters and calls going--until then.

Do feel free to write to your Massachusetts State Senators and Representatives urging support for S-1197 and H-2909. Even if your Senator or Representative doesn't serve on the committee, it can't hurt to spread visibility and awareness of the legislation and the problems it seeks to rectify--and to gain support for a potential vote later. Letters from Massachusetts residents are preferred, but out of state letters can't hurt either. During August, the Legislature is in a general recess, and will only meet informally in session. Little happens this month, but back to full speed next month!

04 August 2011

The Significance of Semantics: Person-First Language: Why It Matters

An accessible audio recording of this article:



At the Adult Services Subcommittee's final meeting last Wednesday, much to do was made about semantic disagreements -- "ASD individual" versus "individual with ASD," and of course, the dreaded "person with autism" or "person who has autism" versus "autistic person." These issues of semantics are hot button issues, and rightfully so.

Words and language are powerful tools by which an individual can express ideas, whether abstract, actionable, or concrete. As a writer and editor, I know firsthand that language and the meanings we attach to words very much impact, influence, develop, and change the attitudes that we have toward the subjects of discussion. That is why people are easily insulted or upset by word choices. Changing a phrase -- even if it holds the same literal meaning -- alters the subtle connotations and nuances of the speech, and communicates a different meaning and context than the original phrasing.

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.

Yet, while I have been familiar with this rift among the autism community over the use of "person with autism" as opposed to "Autistic person," I hadn't fully explored the diversity of perspectives on the topic until now.

During last Wednesday's meeting, one subcommittee member, who I believe is the parent of an Autistic child, and an Autistic self-advocate expressed disagreement over the terms. Feedback from one of our members suggested changing "ASD individual" in our report to "individual with ASD." The Autistic self-advocate sitting beside me, who also has an Autistic brother, voiced her objection to use of the term. "I disagree," she said as the suggestion was read aloud. "I'm not a person with autism; I am Autistic."

Immediately, a mother sitting next to her responded, "I come from a time where that word, 'autistic,' had -- still has -- a negative meaning. It's offensive. When someone refers to my son as 'the autistic,' I cringe at that word; I get ready to defend him."

After our meeting, I took the time to explore a wealth of opinions online about the use of person-first language -- from those who support it and those who oppose it. The theory behind person-first language is that it puts the person before the disability or the condition, and emphasizes the value and worth of the individual by recognizing them as a person instead of a condition. And that's a great idea. In fact, when discussing specific people, I have never once heard anyone -- self-advocate, parent, teacher, or otherwise -- refer to a person as anything except by his or her name. I can't think of any teacher -- at least any decent one -- who would refer to a student as "that Autistic kid," or "that kid with autism." And I certainly can't think of any parent who wouldn't refer to his or her child by name.

But why are we self-advocates so opposed to this terminology? Aren't we all about de-emphasizing and correcting inaccurate, misleading, and harmful stereotypes and attitudes? Right? From that other perspective, you would think we would support the use of person-first language, because we want to be seen as people with equal rights, value, and worth to non-Autistic people. But we don't. Because when people say "person with autism," it does have an attitudinal nuance. It suggests that the person can be separated from autism, which simply isn't true. It is impossible to separate a person from autism, just as it is impossible to separate a person from the color of his or her skin.

One argument I encountered in one of the more cogently-written papers in favor of person-first language expostulates that because cancer patients are referred to as "people with cancer" or "people who have cancer," as opposed to "cancerous people," the same principle should be used with autism. There are some fundamental flaws with this analogy, however.

Cancer is a disease that ultimately kills if not treated or put into long-term remission. There is absolutely nothing positive, edifying, or meaningful about cancer. Cancer is not a part of a person's identity or the way in which an individual experiences and understands the world around him or her. It is not all-pervasive.

Autism, however, is not a disease. It is a neurological, developmental condition; it is considered a disorder, and it is disabling in many and varied ways. It is lifelong. It does not harm or kill of its own accord. It is an edifying and meaningful component of a person's identity, and it defines the ways in which an individual experiences and understands the world around him or her. It is all-pervasive.

What I found most interesting in reading this selection of articles and blog posts is that many of the same arguments are used for both positions, but with separate sides, naturally, coming to very divergent and contradictory conclusions.

Firstly, I saw in at least two articles in favor of using "person with autism" that the authors strongly oppose language referring to disabilities like "suffers from," (i.e. "Alan suffers from Asperger's syndrome;" "Joey, an autism sufferer;" etc.) which has traditionally been a talking point of self-advocates as well. I do understand that not everyone who supports the use of terminology "person with autism" would disagree with language like "suffers from," but it is still interesting that there are those who do. It suggests a fundamental shared value -- that people with different neurological conditions are not "suffering" because of their difference or disability.

Secondly, as alluded earlier, those on both sides want to emphasize the value and worth of the person. Person-first language advocates believe the best way to do this is through literally putting the noun identifying "person" before any other identifiers. (As noted in one of the other articles opposing person-first language, however, English is a language that puts adjectives before nouns, whereas there are multiple languages that always place adjectives after nouns. In Spanish, for example, "person with autism" is "persona con autismo," while "Autistic person" becomes "persona autística." In both cases, autism/Autistic follows the noun.) Person-first language opponents believe the best way to do this is by recognizing and edifying the person's identity as an Autistic person as opposed to shunting an essential part of the person's identity to the side in favor of political correctness.

It is impossible to affirm the value and worth of an Autistic person without recognizing his or her identity as an Autistic person. Referring to me as "a person with autism," or "an individual with ASD" demeans who I am because it denies who I am.

Lastly, what is most interesting indeed is the shared expressed sentiments that using or not using person-first language is necessary to change and shift societal attitudes toward Autistic people. Returning to the premise of this article, this is the sole reason why this debate continues to be argued and why many people on both sides regularly emerge upset and feel personally attacked. Language does play a large role in shaping societal attitudes.

But let's think about what we are doing when we use these terms. When we say "person with autism," we say that it is unfortunate and an accident that a person is Autistic. We affirm that the person has value and worth, and that autism is entirely separate from what gives him or her value and worth. In fact, we are saying that autism is detrimental to value and worth as a person, which is why we separate the condition with the word "with" or "has." Ultimately, what we are saying when we say "person with autism" is that the person would be better off if not Autistic, and that it would have been better if he or she had been born typical. We suppress the individual's identity as an Autistic person because we are saying that autism is something inherently bad like a disease.

Yet, when we say "Autistic person," we recognize, affirm, and validate an individual's identity as an Autistic person. We recognize the value and worth of that individual as an Autistic person -- that being Autistic is not a condition absolutely irreconcilable with regarding people as inherently valuable and worth something. We affirm the individual's potential to grow and mature, to overcome challenges and disability, and to live a meaningful life as an Autistic. Ultimately, we are accepting that the individual is different from non-Autistic people--and that that's not a tragedy, and we are showing that we are not afraid or ashamed to recognize that difference.

That's why, when I read a few articles scoffing entirely at the debate, and dismissing it as ultimately irrelevant (insisting that each person should use the terminology he or she prefers and to ignore what other people say or write), I was concerned. The question of person-first language is definitely important and cannot be disregarded. The way we use language affects those around us -- in our immediate communities and in society at large. Trends of language have the power to transform ideas and attitudes. To dismiss this as "a silly semantics argument" denies the power of language.

What does, however, disturb me is the vitriol during debates about this (and similar) topics in the autism community. While it is, as repeatedly emphasized, an important debate with huge ramifications both short-term and long-term, hurling ad hominem insults, making baseless accusations, and shouting over tables (or computer screens) at the people on the other side ultimately demeans both you and them. It shows great immaturity, inability to civilly and peaceably discuss important topics, and insensitivity to the personal experiences vested in each of us with a stake in this debate. Having strong opinions on a topic and being able to have a respectful discussion with someone else are not mutually exclusive.

So what can we do moving forward? Or, more importantly, what should we do? To those of you who use "person with autism," I will always respect your Constitutional right to express yourself however you like, but I urge you to reconsider the consequences of using such language. To those of you who use "Autistic person," I urge you to consistently use such phrasing everywhere possible, whenever discussing autism and issues that affect Autistic people, and to develop coherent, rational explanations for why you prefer this terminology, so that you can engage in such mutually respectful and civil exchanges with others.

That, actually, goes for everyone. If we ever want to accomplish anything as a community, as a movement, or as advocates, we cannot allow ourselves to be constantly divided by infighting and vicious bullying -- and yes, that occurs from all sides of these debates, not just one. It is imperative that we learn to engage critically and respectfully with one another, and to value each individual's voice and feelings as equally important. Otherwise, we'll become even more dysfunctional than my subcommittee has been in recent months.

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You can read the second part of this argument at “Identity and Hypocrisy: A Second Argument Against Person-First Language,” which was published in November 2011.

Interested in other perspectives? Here are some links to feed your curiosity.

(A note: I believe fully in the freedom of expression and belief, and do not believe in censorship of people with whom I disagree. Thus, I have no policy about excluding or ignoring any particular individual, organization, or idea when linking offsite. Links offsite are not to be construed as endorsement or acceptance of the ideas and opinions expressed therein. If I have wrongfully classified your article [and I did read them all, but may have misread], please let me know and I'll move it to the correct header.)


People who use "autistic" or "autistic person":
- Why I dislike "person first" language by Jim Sinclair, founder of Autism Network International (ANI) *full text
- Dear "Autism Parents" by Julia Bascom
- Autism-first Language by Elesia Ashkenazy, National Advisory Council of the Autism NOW Center
- I don't have autism. I am autistic. by Kassiane Sibley (new!)
- On Language by Gordon Darroch
- Autism First (Again) by Jeff Gitchel (new!)
- People-First Language by Twitchy Woman (new!)
- Reply to a Disgruntled Reader by Leigh Merryday (new!)

People who use "person with autism" or "person who has autism":
- People First Language by Kathie Snow (PDF)
- The Power of Language by Michele Guzmán of the University of Texas Hogg Foundation for Mental Health (new!) This was written in direct response to the Autistic Hoya article.

People who use both interchangeably:
- Autistic or Person With Autism? by Susan Senator (new!)