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28 December 2011

"People First - Create an Environment of Respect"

That was the subject line of an email I received in response to the Chris Baker petition. But the email and my response to it speak far louder than any commentary I could make here.

Trigger warning: Hostility, ableism, and all that fun stuff.



Original email:


Lydia,

I respect and will eventually support your cause via Change.org. However I cannot in good consciousness sign such a disrespectful petition.

In the past "People First Language" has been the greatest of movements and arches into our modern day understanding of ALL people.


In your petition you continuously mention that Chris is "...an Autistic Student". This implies that Chris is Autistic, rather than Chris has Autism. By perpetuating this exclusive language, you and others are singling out Chris. He is a person first. No more and no less than you or I.

The correct usage would be to say: In Mercer County, Kentucky, nine year old Chris Baker has autism [or a diagnosis of ...], was told..

"complete extensive education regarding respectful treatment of Autistic students"

I applaud your consideration and concern for the teacher. The need to educate that person and in fact the entire school aboutstudents who have Autism or that may be diagnosed with Autism Spectrum disorders is admirable.

Kind Regards,

[Name redacted]
Advocate for People and Families Living with Brain Injury


My response:


Dear [name redacted],

Thank you for writing. While I appreciate your concerns and the reasons behind them, I respectfully disagree with your conclusions, especially as written in such a disrespectful email, and I am speaking to you as an Autistic person. I am Autistic, and that is how I identify myself. I, like the majority of Autistic adults and youth, intentionally do not use person first language to refer to ourselves or others who are also Autistic. The Blind and Deaf communities, like the Autistic community, have come to the same conclusion, with the majority of their and our constituencies choosing to use the proper adjective or noun in place of person first language.

We are aware that the majority of other disability groups or communities, including the traumatic brain injury community, prefer to use person first language, and the default for most of us is to defer to the majority consensus of the people with that disability or disabled in that particular way. For example, in reference to intellectual disability, the prevailing majority consensus among that community is to say "person with an intellectual disability," and so in reference to a person with intellectual disability, we will typically defer to that language; however, in reference to autism, the majority of adults and youth on the autism spectrum prefer to say "Autistic person," and so in reference to a person on the autism spectrum, we will typically say "Autistic person." The exception is for the minority of adults and youth who explicitly prefer to be identified as "persons with autism," and in reference to those specific individuals, that language will be used.

In this respect, the language that I have chosen -- which I have done so very intentionally and thoughtfully -- is the most respectful language that I can use, because it defers to the majority consensus of the population so described. When very well-meaning and well-intentioned advocates and members of the community writ large such as yourself insist that we use certain language to describe ourselves against our own stated and explicitly argued wishes, you are essentially telling us what offends us. I, and many others in the community of Autistic adults and youth, do defer to the majority consensus of any disability group when referring to people from those respective disability groups, because that is following the wishes of the constituency so described. I ask respectfully that you do the same in reference to us.

Jim Sinclair, one of the first Autistic people to extend the principles of the disability rights movement to the Autistic community, wrote a seminal essay in 1999 entitled "Why I dislike 'person first' language," which you can read at this link (or here: http://www.cafemom.com/journals/read/436505/). Since then, a number of Autistic people of all levels of visible or invisible disability, have written similar essays, including myself. I have personally written two essays that articulate all of the reasons why I do not ascribe to person-first language, one republished at the Thinking Person's Guide to Autism among other locations, and the other located at my own blog, on the topic. The first is called "Person-First Language: Why It Matters (The Significance of Semantics)" (or http://thinkingautismguide.blogspot.com/2011/11/person-first-language-why-it-matters.html) and the second is called "Identity and Hypocrisy: A Second Argument Against Person-First Language" (or http://autistichoya.blogspot.com/2011/11/identity-and-hypocrisy-second-argument.html).

Lea Ramsdell, writing about identify politics, asserts that "[l]anguage is identity and identity is political." The majority of us who are Autistic and who prefer to be identified as Autistic people do so because being Autistic is as much a part of our individual identities as being American, Christian, or Asian are for me. I do not refer to myself as a person with Americanness, Christianess, or Asianness, and thus I am not a person with Autism either. It is not an inherently good or bad thing to be American, Christian, or Asian, nor is it an inherently good or bad thing to be Autistic. It is simply a part of my identity. Autism is not something from which I can or ought to be separated.

You yourself write "He [Chris] is a person first. No more and no less than you or I." which to me is only a further representation of why person-first language cannot and should not be applied to person first language [sic: should say "autism"]. Use of person first language implies that there is some additional need to verbally recognize the humanity of the person so described, as if by him or herself, he or she does not quite qualify for personhood. Why can I say that I am American or that I am Christian or that I am Asian and do so without fear of being called insensitive or disrespectful to other people who could be described that way? Because we have in our society come to terms with accepting those labels as identity labels, and that people who can be described with those labels are inherently people. We have not yet done that with autism, although recognizing that a person is Autistic ought simply to be recognition of that person's humanity -- as an Autistic person.

Elesia Ashkenazy, also an Autistic and Deaf person, wrote a petition on Change.org explaining very briefly some of the reasons why we do not ascribe to the use of person-first language (http://www.change.org/petitions/understand-autism-first-language), that you may also find to be of interest to yourself. I think a quote from my own essay (the first one linked) summarizes it well.

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.

Stating that I am Christian or American or Asian recognizes that I am different from Muslims or Atheists, Egyptians or Koreans, or Africans or Europeans. It does not mean I am lesser because I am not the latter category. It does not mean I am less human -- or more human. These are descriptor labels of identity. We understand the word Autistic or phrase "Autistic person" in the same way. It is an identity label, and one that may be more or less important to specific individuals whom it describes (as labels like Christian or American or Asian may be more or less important to specific individuals whom they describe), but it is an accurate and honest means of describing my identity. I am Autistic.

Thus, while I thank you for your time in sharing your thoughts with me, I must share why I have come to the opposite conclusion firmly and resolutely, having read and understood the reasoning behind use of person-first language in reference to autism, and being myself an Autistic person or a person who is Autistic. If you can, please take the time to explore the links that I have shared with you, as those articles provide additional information about why the majority of Autistic adults and youth prefer to identify as Autistic rather than "persons with autism." If you sincerely wish to engage in respectful dialogue with and about Autistic people -- and I believe that you do -- then please take into consideration that those of us who are Autistic have the right to determine what we consider to be respectful language.


Blessings and peace,
Lydia


______________

Lydia Brown
[contact information redacted]

Do you know an Autistic student preparing for or attending college or university? The Autistic Self Advocacy Network has announced the publication of Navigating College: A Handbook on Self Advocacy Written for Autistic Students from Autistic Adults. For more information, visit the Navigating College website, or to order a print copy, visit the University of New Hampshire Institute on Disability bookstore.

"Evil is not the absence of righteousness but of empathy."
— Mohsin Hamid

"Everybody is a genius. But if you judge a fish by its ability to climb a tree, it will live its whole life believing that it is stupid."
— Albert Einstein

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09 December 2011

When the Educational System Fails

UPDATE: 21 Dec. 2011: Jenny Holcomb, Emily's mother, announced a successful result from mediation with school officials this Monday, due in no small part to the political pressure from the over 1,100 signatures on the petition.

UPDATE: 13 Dec. 2011: You can view the full signatures list as of 1:20pm EST (6:20pm GMT) here!

UPDATE: 11 Dec. 2011: I have written and posted a petition to Change.org demanding serious changes be made in the next year in Marion County to prevent this kind of abuse. Please sign and share!

UPDATE: 10 Dec. 2011: Jenny Holcomb, Emily's mother, announced that the charges have been dropped. The fight isn't over yet, though; Jenny still needs to meet with school officials in mediation to demand appropriate services and education for Emily.



WHEN THE EDUCATIONAL SYSTEM FAILS

...again. This time, it's Hamilton High School in Marion County, Alabama. A little after this October, Emily Holcomb, fourteen year old non-speaking Autistic student, was ordered out of school after school officials had the district attorney's office file first degree assault (a felony) charges against Emily for "hitting" and "shoving" her teacher, apparently causing a "minor injury" -- really, open-handed swipes and trying to push away from a woman (the teacher) who had physically restrained her for fifty-five minutes. Fifty-five minutes. Fifty-five...

That's abuse.

And now the school, after having negotiated an individualized education plan (IEP) including the services of a full-time aide specializing in autism, has decided that criminal charges are the way to go. Yes, that's right. Criminal charges. Go ahead and read the news story here if you find this to be too bizarrely incredulous.

Now, Zakhqurey Price, does anyone remember that name? He was an Autistic fifth grader in 2009 charged with assault when, after calming down from a meltdown, his teachers decided to corner and restrain him, and he (predictably) lashed out.

Why do school systems feel the need to criminalize autism? This blog tends to focus on issue and philosophy centered articles related to autism and advocacy, but this horrific, tragic turns of events is only more evidence of the deeply-rooted systemic problems in the way our country looks at differently-abled or disabled people, especially Autistic people. And something needs to be done. And something can be done -- by you and I, sitting here and reading this post. In fact, I've already created a Facebook group where you can read about the case and see updates.

But for now, what can you actually do to help? You can write, email, or call the school's superintendent who filed the complaint, the district attorney of Marion County, and the deputy district attorney who seems to be handling the case, asking them to drop the case and any charges. Emily needs help, and she needs help now. This isn't some fancy theorizing or overly intellectual model of some idea -- this is the life of an actual person whom someone is trying to destroy.

Demand that the school request the District Attorney's office drop all charges. Demand that the District Attorney's office refuse to prosecute the case. Remember to be polite and respectful. Explain that restraining Autistic people for fifty-five minutes is abuse. Explain that slapping outward is a defensive mechanism, not a violent act. Explain that Autistic children need caring, encouraging teachers who respect them, NOT criminal charges.

Mr. Ryan Hollingsworth
Superintendent, Marion County Board of Education
Marion County Schools
188 Winchester Drive, Hamilton, AL 35570-6626
(205) 921-3191 office
(205) 921-7336 fax
ryanh@mcbe.net

Jack Bostick
District Attorney
Marion County Alabama Courthouse
132 Military Street S, Hamilton, AL 35570
Phone: 205-921-7403

Paige Nichols Vick
25th Judicial Circuit
District Attorney's Office
PO Box 1596, Hamilton, AL 35570 1596
Phone: 205-921-7403

Tips for Letters and Phone Calls
  • Beginning of letter, introduce yourself (name, city and state) and your connection to autism (if any), as well as any organizational affiliations or professional credentials.
  • If a phone call, ask politely for "Mr." or "Ms." [name].
  • Be respectful, using proper greetings and forms of address, even if you think the subject(s) deserve(s) no respect.
  • Be polite, as this always adds power to your words. Polite here meaning writing in such a way where you do not intend to offend or insult.
  • Use proper grammar, spelling, capitalization, and punctuation. This adds professionalism.
  • Be succinct. Don't write a ten page novel. The subject will not read it. Guaranteed.
  • Be personal, if you have a personal story or connection. Make sure the subject knows why you care.
  • Be firm. You know you are in the right.
  • Explain why this is wrong. Tell the subject why it is wrong to criminally charge an Autistic person for an action that wasn't malicious, intended to be harmful, or offensive (meaning unprovoked).
  • Demand that charges be dropped immediately.
  • Conclude by thanking the subject for his or her time and consideration.
  • Sign with a professional greeting in a letter.
  • Include your full name, city and state, and address (home or work) at the top of the letterhead or beneath your signature in a letter.

And please, pass on this link. The more voices are heard, united behind Emily against the people who somehow think it's appropriate to criminally charge an Autistic person reacting defensively to people who were essentially abusing her, the larger and greater the possibility we can actually effect change. Yes, actual change. Strangers on the internet have that power; now it is time to exercise it.

28 November 2011

Identity and Hypocrisy: A Second Argument Against Person-First Language

Note/Edit, July 2017: When I originally wrote this blog post in November 2011, I identified with some experiences and labels that I no longer identify with. I've edited those descriptors to replace them with ones that feel more affirming of my current experiences moving through the world, and ask that if you have quoted from this page, you also add some note to update or change it.

***
You can read the first argument at “The Significance of Semantics: Person-First Language: Why It Matters,” which was published in August 2011.

I keep being reminded of the philosophy behind “person-first language,” which I have discussed and critiqued at length in a previous article. Let me now ask a different set of questions and explore a different set of arguments, which I have not heretofore had the opportunity to present.


I am East Asian, in regards to race, and Chinese (Han, specifically), if you go by ethnicity. I am U.S. American if you go by nationality. I am a person of ambiguous faith and Christian upbringing by religion, and radical leftist of some otherwise undefined fashion, if you go by politics. I am genderqueer and non-binary. I am Autistic.

None of these cultural descriptors are inherently good -- nor are any of them inherently bad. It is not an inherently good thing to be East Asian or U.S. American or a person of faith, and it is not an inherently bad thing to be Chinese or leftist or genderqueer. There may be aspects or consequences of my identity as an East Asian or U.S. American or person of faith (especially of Christian background) that are advantageous, useful, beneficial, or pleasant; likewise, there may be aspects or consequences of my identity as a Chinese person or person of ambiguous faith or genderqueer person that are disadvantageous, useless, detrimental, or unpleasant. The converse statements are also true.

If this is true of these cultural labels, why is it correct to say that I am East Asian, or that I am Chinese, or that I am U.S. American, or that I am a person of faith, or that I am a leftist, or that I am genderqueer, and for some reason incorrect to say that I am Autistic? Would I say that I have Asianness, or Chinese-ness, or that I have Americanness, or that I have religiosity or spirituality, or that I have leftistness, or that I have genderqueerness? Those statements are ridiculous. They are considered incorrect because these identifying adjectives are precisely that -- markers of my identity. Not one of them is the sole component of my identity, but they overlap and interact and form the foundation for who I am and how I exist in the world.

This is true of autism. “Autistic” is another marker of identity. It is not inherently good, nor is it inherently bad. There may be aspects or consequences of my identity as an Autistic that are advantageous, useful, beneficial, or pleasant, and there may be aspects or consequences of my identity as an Autistic that are disadvantangeous, useless, detrimental, or unpleasant. But I am Autistic. I am also East Asian, Chinese, U.S. American, a person of faith, leftist, and genderqueer.

These are not qualities or conditions that I have. They are part of who I am. Being Autistic does not subtract from my value, worth, and dignity as a person. Being Autistic does not diminish the other aspects of my identity. Being Autistic is not giving up on myself or limiting myself or surrendering to some debilitating monster or putting myself down. Being Autistic is like being anything else.

Some Autistic people choose to engage more actively with Autistic culture and community, and others would prefer not to involve themselves in the larger community. So? Some people of faith choose to engage more actively with faith-based cultures and communities (either of a specific faith, or that are spirituality-based in general), and others would prefer to avoid faith-focused events or communities. Some East Asians choose to engage more actively with East Asian cultures and communities, and others do not.

It simply shows the importance assigned by an individual to the various aspects of that individual’s identity. But these factors remain equal as inherent parts of that individual’s identity regardless of the individual’s choice to tap more deeply into one or another of those aspects and not others.

Person-first language is a form of hypocrisy. Its strongest advocates are non-disabled parents and professionals, very well-meaning people who love their friends and family members and students deeply and who want to do right by them by treating them as human beings. But if a fairly large number of us to whom this type of language refers find it objectionable, why are we told “Well I respect your opinion, but I think person-first language is more respectful.”

It’s nonsensical. While I do know that there are people on the autism spectrum or from other parts of the disability community who prefer person-first language, the vast majority of people whom I know are in agreement with my objections to its use and consequences, especially in terms of shaping and reflecting societal attitudes. (More has been written on that in my first argument.)

Why is it culturally appropriate and typical to accept race, religion, and nationality as markers of identity that ought to be designated with proper adjectives that (in English) precede the noun “individual” or “person” and not those that fall under the category that we call “ability?” Is it a reflection of a secret fear of the non-disabled of people who are not like them, or is it a reflection of the inhibiting fear of offending one of us? As most of us prefer to identify with proper-adjective language (disabled or Autistic), using this language is highly unlike to offend. Asking me, “So you have autism?” will almost always produce a wince and a cringe. An identity is not something that I have. It is who I am.

01 November 2011

Disability is a Social Construct: A Sociological Perspective on Autism and Disability

An accessible audio recording of this post:

Disability is a Social Construct - Autistic Hoya by autistichoya




(Special Note: Today is Autistics Speaking Day. With the end of midterm examinations and the second annual Autistics Speaking Day, I’ve prepared a special article during a time that might otherwise have been occupied with some intense studying.)


Earlier this year, someone I knew told me about meeting a man who obtained very high levels of education (probably a doctorate) in a technical field and who is reputed as one of the top minds in the entire country in his field. He was sought by some of the most prestigious educational institutions in America. Instead, he chose to work for the government, for one of the agencies in the intelligence community. At forty-something years old, he lives with his mother, who drives him every day to work.

When I told my mother this story, and suggested that he might have been Autistic based on the facts that I know about him, she immediately shook her head and said, “That’s sad. His mother didn’t do the right thing for him. He should be able to live on his own and take care of himself, and take himself to work. That’s not a successful ending.”

“No it’s not,” I responded immediately. “You don’t have to be able to live independently to be happy or a contributing member of society.”

“But what’s going to happen when his mother passes away? Who’s going to take care of him then? He’s not going to have anywhere to go.”

That, to me, is the most significant problem, and it is a societal one.

Disability is a social construct. That may seem like a revolutionary idea, or perhaps the proud declaration of someone who would rather not use an “ugly” or “pejorative” word. But what that means is that the way that we understand disability is ingrained in our society’s attitude toward ability. When most people say or read “disability,” they understand that word to mean a person who is unable to fully participate in typical life activities because of a mental or physical impairment.

Our culture says that to be fully functional and able means that one should be able to attend a mainstream school, complete university or vocational training if desired, obtain housing, obtain and keep a steady job, and marry and support a family if desired -- all without significant outside support or assistance. While it is considered socially acceptable to speak to a college counselor while in high school, see a math tutor for algebra or calculus, and even depend on one’s parents for financial support through young adulthood (twenties or so), an individual is not considered fully able and functional if he or she is unable to do one or more of those activities without significant amounts of support from others.

By this definition, the definition propagated and permeated throughout the societies in which we live, we Autistic people are disabled. Some of us may be more disabled than others -- as some of us are more able to participate in life activities with less amounts of outside support, and others of us do now and will throughout their lives only be able to participate in some of those activities with significant amounts of outside support.

For the other Autistic folk reading this article, please understand that I am not classifying or differentiating “types” or Autistic people. I feel very strongly that you are either Autistic or not Autistic. I do not believe it is possible to make meaningful distinctions between types of Autistic people through terms like “severe” or “mild” or “high-functioning” or “low-functioning.” Those terms are not only demeaning and offensive, but also lack scientific validity. I do not think it is possible to be “mildly” Autistic.

Why is that? Autism is a bio-neurological developmental disability (and there’s that “disability” word again) defined by a certain set of characteristics -- differences in sensory processing, information processing, and communication. Those marked deviations from a typical neurological profile (or, in any case, most non-Autistic people) manifest themselves in a variety of ways -- some fairly positive, some fairly challenging, and others simply -- different. For us Autistics, autism affects and influences every aspect of our lives, throughout our lives. In short -- you either have this particular grouping of characteristics or you do not. You are Autistic or you are not Autistic.

Let me take a moment here to draw an analogy with religion. Of people who identify as religious (and one’s faith, or choice not to align with a particular faith, necessarily impacts all of one’s ideas and beliefs about everything else -- politics, ethics, and otherwise, informing and influencing all aspects of that person’s life), some are immediately recognizable as religious by glancing at them. You might see a man wearing a skullcap and yarmulke, or a woman wearing a hijab headscarf, or a man with a clerical collar -- and you would know immediately that that person is religious. In other cases, you might know a certain person fairly well, speak to him or her quite often, and never think about religion or whether the person is religious -- but that does not change the fact that that person belongs to a particular faith tradition or that that person’s beliefs about religion are an integral part of his or her identity and worldview (regardless of how deeply involved with “traditional” religious activities the individual may be.)

Similarly, some Autistic people may appear at first glance to be Autistic, based on common ideas of what it looks like or means to be Autistic, while others have become skilled, through life-experience or coaching, at “passing” for non-Autistic. Not all Autistic people are interested in Autistic culture (which, quite frankly, I think is tragic -- but a personal decision.) Not all Autistic people choose to identify themselves as Autistic -- and for a myriad of reasons, not least of which is the justified fear of discrimination or misunderstanding. When you live in a world where people think it is a compliment to tell you “But you seem normal,” and where you are under constant pressure to appear as non-Autistic as you can, that creates an environment where it is supremely uncomfortable to disclose that information.

And like people who all belong to the same faith, each Autistic person -- while sharing a common identity -- is an individual. We are not identical, and we each have our own individual strengths and weaknesses. Autistics are a diverse lot. Some of us speak, and some of us do not. Some of us have attended mainstream schools, and some of us have attended schools specifically for special education. Some of us have gone on to university, and some of us have not. Some of us can effectively advocate, and some of us have not yet learned how to advocate. Some of us can live independently, and some of us need intensive supported living services. Some of us have obtained jobs and worked toward careers in a competitive environment, and some of us struggle to find employment. We are not all alike. But we are all Autistic.

But what does this have to do with disability? Why do I use this word? Because it would be inaccurate, within the context of our society, to say that Autistic people are not disabled. It would also be inaccurate, within the context of our society, to say that no Autistic people are more or less disabled than other Autistic people. Within the context of our society, some Autistic people are more disabled than others, because of how we have come to define and understand ability.

I do not like the word disability. I do not think it should be used. I hope that over the coming generations, it will fall into disuse -- or at least, be redefined. If I could redefine “disability,” I would start with our definition of what it means to be fully functional and able. To be fully functional and able -- outside the context of our particular societal attitudes -- should mean possessing the ability to live a life that is meaningful and satisfactory for oneself, by one’s individual feelings, with the appropriate amounts of support where required to live that life. By that definition, almost no one would be disabled. Nearly every Autistic person falls into that definition -- and I only say “nearly” because I try to avoid absolutes. Notice that the definition that I have proposed does not say anything about independent living or activities of daily life. It is only in our society that “independent living” is a hallmark of being fully functional and able. I do not think that “independent living” has any correlation with the ability to live a meaningful life or to make meaningful contributions to society.

But in our society, I use the word disability. In fact, I use it quite often. And why is that? Because if I need to advocate on behalf of Autistics in order for us to receive needed services or supports, or for systemic changes to be made to benefit Autistics, I have to use the word disability to get attention, to be taken seriously, and to effect those changes.

I think this is a tragedy. I think it is a tragedy that while there are parts of the world -- usually rural, “undeveloped” (another word with such nuanced connotations behind it) areas -- where people who need significant amounts of outside support are welcomed and supported by the entire community, and where this is natural and normal, it is abnormal or exceptional in most of the “developed” world, and indeed, in the places where most people live. We look down on people who require significant support from people, especially non-family members. We pity them. Sometimes, we think of them as burdens to society because of the public funding that goes to support them. In these other parts of the world, in these isolated hamlets, these people are equal parts of the community that joyfully supports and encourages them instead of reluctantly giving to charity cases.

That is why I found my mother’s response to the story so problematic. It encapsulates, in only a few fell sentences, the attitude our society has developed toward ability and disability.

I am Autistic. For now, I am disabled.

Today, I am speaking.

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.

--

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!)


22 July 2011

Level III Aversives and the Judge Rotenberg Center

Today, I testified at the Massachusetts Department of Developmental Services statutorily mandated hearing on proposed amendments to regulations regarding minimum standards for the treatment of people with developmental disabilities, including intellectual/cognitive disabilities. The marathon hearing was held at the McCormack Building in downtown Boston, beside the State House, and went all the way from ten in the morning until four in the afternoon. Commissioner Elin Howe of the DDS presided over the hearing, and seemed to be very pleased to see me; Commissioner Howe is one of the members of the Autism Commission, and I have attended almost all of their meetings. (I believe she has also attended some of the Adult Services Subcommittee meetings.)

When I arrived, there were already over twenty people present, if not much closer to thirty, and the numbers grew by the minute, with more and more people crowding into the room I usually associate with the Autism Commission meetings. Outside the conference room, Commissioner Howe greeted me and asked me whether I intended to testify. "I've been thinking about it all week, but I haven't prepared anything," I said.

"That's fine," said Commissioner Howe, directing me to a table between the two entrances to the room, "but you can sign in over there, and you can always change your mind later."

"Okay, thanks," I said, and headed to the table, where I gave the ladies my name. I noticed that there were already several names listed on the sheets, although I didn't know at the time that out of the well over eighty people who attended, maybe around forty, perhaps a bit closer to fifty, would give oral testimony.

After signing in on the sheet, I went inside and took a seat to the right side of the room, between one of the CART accessible communication providers and one of the sign language interpreters. I sat quietly, eating my croissant from the Dunkin Donuts near the State House, careful not to let crumbs all over my suit or the floor.

When Commissioner Howe gave her opening remarks, she introduced the purpose of the hearing and described the proposed amendments. The proposed amendments would ban the use of Level III aversives, which include pinching, hitting, deprivation of food, and electric shocks. (Nevertheless, it does not prohibit the use of these aversive interventions for students who will have had an existing court-approved intervention plan including Level III aversives by 1 September 2011.) This was the second of two hearings. (The first was on Wednesday, and had been held in Worcester.)

Immediately following her remarks, she announced that attendees who had indicated they wished to testify would be called in order listed on the sign-in sheets. The first person to give testimony was Henry Clark, a lawyer representing the parents association of the Judge Rotenberg Center, a residential and day institution for the developmentally disabled and behaviorally challenged in Canton, Massachusetts. The JRC, in fact, is at the heart of the matter. The JRC has been open since at least 1977, where it was originally called the Behavior Research Institute until a 1986 ruling by a Judge Rotenberg allowing the use of electrical shock as a therapy. Afterward, it was renamed in honor of this judge.

For well over twenty years, individual legislators in the Massachusetts Legislature have tried to pass bills to completely ban aversive shock therapy; however, each time, they are met with the millions of dollars the JRC has in lawyers and lobbying power, and, the sweeping majority of legislators knowing little about psychology or developmentally disabled people, the affected "expertise" of the employees and staff of the JRC. Intimidated by the endless train of JRC staff and the parents of JRC students, the legislature has repeatedly failed to pass these bills. More recently, the JRC has gained a powerful ally in Representative Jeffrey Sánchez, whose nephew is an Autistic young man in his twenties with severe maladaptive behavioral challenges as well as severe spatial agrosia (inability to recognize his own body's location in space and its proximity to other objects and people.) Sánchez is an ardent, absolute supporter of the JRC who refuses to hear anyone who even partially deviates from his opinion that nothing should be done to restrict or regulate further the use of aversives.

Starting with Senator Brian Joyce's bills filed in the 2009-2010 legislative session that would compromise on the issue of aversives (establishing stricter external oversight and regulations of the use of the type of aversive shock therapy that the JRC uses, as well as its alleged deprivation of food [up to three-quarters of daily nutrition] and forcing inmates to engage in the behaviors for which they are then punished), it seemed that such a compromise might actually make progress in the legislature. It did in fact progress beyond any previous proposed ban before dying in the House Ways and Means Committee, arguably the most powerful of any of the legislative committees. (Any bill requiring appropriation of funds must be reported favorably by House Ways and Means.)

Senator Joyce's bills were re-filed in the current (2011-2012) legislative session as Senate Bills 49, 50, and 51, along with Senator Tom Sannicandro's proposed complete ban on these types of aversives as House Bill 77. These bills are scheduled for a hearing at the State House on this coming Tuesday, and based on the propagandizing evident at today's regulatory hearing, the JRC will appear in full force, shepherding dozens of staff members before the Joint Committee on Children, Families, and Persons with Disabilities to do what they've always been successful in doing -- intimidate the legislature into complying with their agenda. Again.

Mr. Clark's testimony would mirror the testimony of the close to thirty-something (if not more) JRC administrators and other employees who appeared today, and the two or three parents of JRC inmates. He and his cohorts (some of whom rather amusingly read prepared remarks referencing the four pieces of proposed legislation, which were not the topic of today's hearing [two entirely different parts of government]) made several arguments, all of which can be refuted by facts and evidence:

Firstly, the JRC supporters argued that level III aversives, such as their GED skin-shock device, can be "a life-saving intervention" in the cases of individuals with maladaptive behavioral problems like severe head-banging, skin-picking, hitting or punching themselves, biting others, spitting at others, or attacking others. Perhaps in a true emergency, when used solely as a temporary measure, in the most severe cases of self-injurious or destructive behavior that threatens imminent, life-threatening harm to self or others, such aversives like electric shocks may have some level of efficacy. If so, why should these people be opposed to allowing such interventions, under the strictest possible supervision and regulation?

The Department of Developmental Services is statutorily charged with upholding professional standards and establishing policies to protect some of the most vulnerable, at-risk people in the Commonwealth -- people with intellectual/cognitive or developmental disabilities. In that capacity, it must protect the rights of disabled people, including the rights against inhumane, cruel, or abusive treatment, and the right to as much self-direction in any intervention or support planning as is possible. If the DDS is also supposed to ensure that its population is receiving appropriate and necessary services and supports, it has a moral and legal responsibility to ensure the wellbeing and dignity of these people is protected as well as a responsibility to create regulations applicable both to state agencies and private providers, like the JRC, to this end. The purpose of doing that is to promote improving the quality of life for disabled people -- by including them inasmuch as possible in the process, and by preventing potential opportunities for exploitation, abuse, neglect, or well-intentioned harm.

The proposed regulations by the DDS allow individuals who currently receive court-approved level III aversives to continue to receive that treatment. In that respect, the JRC will not be prevented from applying the GED to the inmates whom are already subjected to it. It does, however, prospectively ban any future approval of level III aversives. You would think that this would allow the JRC to provide for alternative means of behavioral intervention and support and to seek alternative remedies; however, the JRC's cronies make another fallacious argument in response to this speculation.

The JRC's second wrong argument is that because positive behavioral interventions failed with these individuals, the only possibly effective alternative to level III aversives is heavy dosages of psychotropic medications that will result in disabled individuals being in "a catatonic state," as one of its staff members described in oral testimony today. This is not true. Despite the JRC's efforts to paint opponents of level III aversives as promoters of overmedication, many people who ardently -- and rightfully -- oppose the use of these kinds of aversives do not support the arbitrary and ineffective prescription of psychiatric medications to any or all developmentally or intellectually/cognitively disabled people. For some people, medications may be effective in the long-term and in the short-term; for others, such medications may be effective and necessary as a temporary short-term measure; and for still others, these medications may be unnecessary and should be not prescribed.

There are other institutions that care for individuals with the most severe, self-injurious or destructive behaviors without using chemical restraints or shock aversive therapy, and whose residents have good outcomes. The JRC does not provide transitional planning for its inmates to prepare for leaving the JRC and returning to the community. Instead, it advocates that its inmates belong at the JRC and must be given shock aversive therapy for the rest of their lives. There is a silent threat that if the JRC is ever forced to close its doors, its inmates will be returned to their parents' doorsteps without any behavioral supports and without other options.

This is entirely unfounded and untrue.

We know that aversives, consistent with the theory of Pavlovian conditioning, address only the actual maladaptive behaviors. They do not address the root causes of why these individuals engage in these harmful behaviors. Take a weed, for instance. If you pull a weed's leaves, the roots remain. The weed may appear to be gone for awhile, but check back in a few days or weeks, and voila! It's back. If you don't take the time to search for the roots and remove them, you will not kill the weed. Likewise, if you do not address the causes of maladaptive behavior -- sensory overload, inability to communicate, etcetera. -- you do not address the real problem. It's the tip of the iceberg, so to speak. Aversives cannot do that. Aversives cannot remove offending sensory stimuli, and aversives cannot provide people with a means of expressive communication, be that verbalizing speech or otherwise. All aversives can do is induce fear and pain in a person who may or may not be able to communicate that terror.

We also know from psychology that an aversive, once removed, will cease to have its effect. Given sufficient time, the mental association of the aversive with the undesirable behavior will fade, and the frequency of the undesirable behavior will actually return. This alone should be enough to refute the arguments in favor of the efficacy of aversive therapy. As a long term measure, it has no effect and remains a band-aid over a bullet wound at best. At best.

Thirdly, Mr. Clark argued that were the DDS to implement these new amendments to its regulations regarding aversives, the DDS would deprive the families of disabled people of their civil rights. Yes, that's right. Clark said "civil rights." Excuse me, but are we back in the 1950s again, or perhaps earlier, the 1880s, where disabled people only exist as extensions of their families, and where their parents or siblings alone have the right to speak for them, putting words in their mouths about their wants and needs? Oh that's right. As another JRC employee testified today, "Adopting these regulations would be a step backward into the Dark Ages." Wrong again. If the DDS does not implement these regulations, it will be a civil rights violation. It will be a violation of the civil rights of every disabled person in Massachusetts.

According to Clark, whenever the JRC or an individual's parents wish to include level III aversives in a behavioral intervention plan, an adversarial hearing is held in which a judge makes the determination whether or not to permit level III aversives. Aside from the obvious accusations of ties between the court that makes those decisions and the JRC itself, Clark argues that the civil rights violation would be violating the rights of the parents to decide for their children. Actually, our courts have upheld the rights of parents to make decisions for their children without state intervention except when there is a compelling interest on the part of the State to act in the interest of the child's benefit, such as in cases of abuse. More recently, in 2009, Minnesota Judge John Rodenberg (whose name, ironically, is etymologically related to that of Judge Rotenberg for whom the JRC is named) ruled that thirteen year old Daniel Hauser's parents could not choose to deny their son necessary chemotherapy in favor of alternative treatments; Daniel was provided with child protective services.

Whenever a child's rights are in danger, and in particular, whenever a disabled child's rights are in danger (or a disabled adult's rights!), our government does have a moral and legal obligation to prevent the infringement of that individual's rights. All people have certain rights, including the right to be free from fear of inhumane or cruel treatment. You would think that our most vulnerable citizens would be protected by the government, if anyone. But instead, what has happened over the last few decades is an appalling example of bowing obsequiously to the special interests of the JRC (and the JRC alone -- as it is the only institution in the entire country that uses electric shock aversives.) If the government does not intervene to protect these essential rights, they allow for the rights of any disabled person to be trumped by the agendas of others. Disabled people have civil rights too, and those rights must be not merely recognized and paid lip service, but must also be upheld and protected.

I made these points during my brief testimony, emphasizing the egregious civil rights violations against disabled people by the continued use of shock aversives and other level III aversives, in direct contradiction (or perhaps subversion of) to Clark's argument.

That was around eleven in the morning. I was one of the first ten people to give testimony.

By the time two in the afternoon rolled around, the vast majority of people giving testimony were staff from the JRC. I couldn't help but wonder at one point who was watching the JRC's inmates if their entire staff were at this hearing. I was told by another attendee that Wednesday's hearing had consisted of three-fourths of JRC staff testifying. It seemed like a similar ratio today, maybe a little closer to two-thirds than three-fourths. A few self-advocates spoke, as did a few parents of disabled children who have had such self-injurious and destructive behaviors, but who sought alternative interventions to aversives that were ultimately successful. Stephen Schwartz, a lawyer representing some parents and former inmates of the JRC, also gave testimony in support of the proposed amendments to the regulations. He noted later that he had, early in his career, mistakenly recommended that a young man be sent to the JRC and receive shock aversives; however, Mr. Schwartz also shared that one parent whom he represents wanted the child removed from the JRC, and the JRC sought an injunction preventing the parent from doing so. So much for the civil rights of parents in making decisions, Mr. Clark.

One of the clinicians for the JRC almost broke down during her testimony. "We are called monsters," she said, speaking of herself and other JRC clinicians. "We go places and there are people screaming at us, swearing at us. They throw things at us. We go to conferences and we are called monsters." Well, however wrong it is for JRC opponents to scream and swear at the JRC's staff (and it certainly is wrong for anyone to do that to anyone else, no matter what they believe or do), if you are willing, under the guise of doing good, and when there is scientific and empirical evidence that supports the use of non-painful interventions to reduce and eliminate self-injurious and destructive behaviors, to subject disabled people to ELECTRICAL SHOCKS, you are a monster.