"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.

Please visit: http://www.inclusionproject.org/nip_userfiles/file/People%20First%20Chart.pdf

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.

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— 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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Can ordinary people effect change?

Trigger warning: Abuse and torture of an Autistic person by a teacher.

--

Update 30 Dec. 2011: Close to 150,000 people have signed the petition.

Update 27 Dec. 2011: Over 75,000 people have now signed the petition.

Can ordinary people effect change?

If you'd asked me that question even a few months ago, my answer would have been a snide, "Only if those people have powerful connections and money." In the last week or so, that cynicism went out the window. First, with the successful result of the petition in Alabama this Monday, and now, with national attention turned to Chris Baker's case in Kentucky, I can make no case for pessimism ever again.

What happened with Chris?

LOUISVILLE, Ky. (AP) — A 9-year-old autistic boy who misbehaved at school was stuffed into aduffel bag and the drawstring pulled tight, according to his mother, who said she found him wiggling inside as a teacher's aide stood by.

The mother of fourth-grader Christopher Baker said her son called out to her when she walked up to him in the bag Dec. 14. The case has spurred an online petition calling for the firing of school employees responsible.

"He was treated like trash and thrown in the hallway," Chris' mother, Sandra Baker, said Thursday. She did not know how exactly how long he had been in the bag, but probably not more than 20 minutes.

...

Chris is a student at Mercer County Intermediate School in Harrodsburg in central Kentucky. The day had barely begun when his family was called to the school because Chris was acting up. He is enrolled in a program for students with special needs.

Walking toward his classroom, Baker's mother saw the gym bag. There was a small hole at the top, she said, and she heard a familiar voice.

"Momma, is that you?" Chris said, according to his mother.

A teacher's aide was there, and Baker demanded that her son be released. At first, the aide struggled to undo the drawstring, but the boy was pulled out of the bag, which had some small balls inside and resembled a green Army duffel bag, Baker said.

"When I got him out of the bag, his poor little eyes were as big as half dollars and he was sweating," Baker said. "I tried to talk to him and get his side of the reason they put him in there, and he said it was because he wouldn't do his work."

Baker said when school officials called the family to pick him up, they were told he was "jumping off the walls." Days later, at a meeting with school officials, Baker said she was told the boy had smirked at the teacher when he was told to put down a basketball, then threw it across the room.

At a meeting with school district officials, the bag was described as a "therapy bag," Baker said, though she wasn't clear exactly what that meant. She said her son would sometimes be asked to roll over a bag filled with balls as a form of therapy, but she didn't know her son was being placed in the bag. She said school officials told her it was not the first time they had put him in the bag.

Read the rest of the Associated Press article here, or on any of the literally dozens of local and national news syndicates that have republished it in the last few hours alone. That's right -- this news article has been republished in dozens of places, gathering over four hundred comments at Yahoo and hundreds of views. The petition, which had several hundred signatures as of earlier today, now has well over 1,200, and the number continues to swell every several minutes. (It should be 1,300 soon.)

I had been called earlier today by staff for Change.org, Katie Bethell, who works to publicize and advance education-related campaigns. Katie put me in touch with an AP reporter, Janet Blake, who asked about Chris's situation and the petition campaign. How does Change.org work? Every time an individual signs the petition, an email is sent to all fourteen targets containing the text of the petition. So far, that's over 1,200 emails to the entire Board of Education in Mercer County, and the principals of each school in the county.

The school has not yet announced firing the teachers involved, nor formally responded to the demands in the petition that would mandate extensive training about autism and other disabilities for all special education teachers, basic training about autism and other disabilities for all non-special education teachers, and an explicit prohibition of the use of any kind of restraint or seclusion on any student except briefly and as a last-resort emergency measure. That kind of training would give teachers a better foundation for interacting positively and meaningfully with their Autistic students and students with other disabilities, and prevent a majority of these kinds of incidents.

But I am hopeful now that with increased national attention, enough pressure will force the Board of Education to take action.

Torture and abuse are always wrong. You couldn't do this to an "enemy combatant." You couldn't do this to an animal. You couldn't do this to your own child without having Child Protective Services removing your child from your home. It's not okay for teachers to do it either.

Yes, ordinary people can effect change.

Letter to my AP English Teacher

Trigger warning: Incident of ableism from a teacher.

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21 December 2011

Dear [name redacted],

Do you remember what you said to me last fall?

I walked into your classroom during the fifteen minute break period. I probably had a question about our senior Globe project. Maybe I was reciting my lines. When I went to leave, you asked if I knew where two other seniors were. "They're probably in the senior hallway," I said, and you asked if I would go check. "Oh, I never go in the senior hallway," I responded. You asked why. "I have sensory issues, and I can't go into the senior hallway," I said.

Do you remember that? Maybe you remember what you said to me next. You looked me in the eye unflinchingly, and spoke in a firm, certain tone.

"You're just going to have to get over that."

For a few seconds, I'm sure, I stared at you in shock. Excuse me? "I don't 'get over' my sensory issues; sensory processing disorder is a neurological disability; it doesn't 'go away' and I can't 'get over it.' I can and do develop coping mechanisms, but I'm never going to 'get over' sensory processing disorder." Not to mention how presumptive, ableist, and insulting you were. I don't remember what else I said, only that I spent a good two minutes or so angrily explaining the nature of SPD.

Later that year, I heard that you told another student with a learning disability the same thing when that student went to talk to you about something -- possibly to ask for help or an informal accommodation, although I don't know the details.

Ever since, I have intended to write this letter. It's now December 2011, well over a year after this happened. I might have been dissuaded of the notion simply because of the long lapse in time between the original incident and today's date, but what you said to me cannot be forgotten, excused, or overlooked. It's far too significant and it was far too hurtful for that to be even a possibility.

How can you, an educator and a mother, look a person in the eye who has disclosed an intimate detail of his or her difficulties in your world, and say, "You need to get over that" to that person's face? It takes immense courage for most people with invisible disabilities (those that are not necessarily apparent simply by looking at an individual) to disclose their disabilities to non-disabled people, because people like you apparently cannot grasp the concept of an invisible disability. Simply because you cannot see it the way you could see a thin white cane or a wheelchair does not mean that it does not exist, is not real, or does not truly impact an individual.

How can you, an educator and a mother, listen to what someone has told you in explanation of some part of him or herself, and respond in such a dismissive and condescending manner? While those of us who are part of the disability community (people with disabilities or disabled people) may diverge on the relative importance we assign to our individual identities as a person with a disability or disabled person, disability (or ability) is an inherent part of an individual's identity and life experience -- in the same manner as race, religion, or sex. There is nothing more condescending than to talk to a disabled person or person with a disability and assume that you know more about his or her condition than he or she does. There is nothing more dismissive than to talk to a disabled person or person with a disability and suggest that that person can in fact make his or her disability go away.

Would you tell a man using a wheelchair that if he just "got over" his problems, he could walk? Would you tell a Blind woman that if she just "got over" her problems, she could see? Would you tell a Deaf man that if he just "got over" his problems, he could hear? I didn't think so. You wouldn't say such a thing, because nearly any rational person would be rightfully outraged at the mere suggestion. But you, [name redacted], seem to think that it is acceptable to tell a person with an invisible disability that if he or she just "got over" his problems, the disability would go away. There is so much wrong with that statement that I can hardly begin to dissect it. It reeks of ableism.

Do you know what ableism is? Merriam-Webster defines ableism as "discrimination or prejudice against individuals with disabilities." Ableism takes many forms, as it is necessarily manifested differently against people with physical disabilities as opposed to people with mental disabilities, or people with learning disabilities, or people with cognitive, intellectual, or developmental disabilities. In our community -- that is, the community of people with disabilities, and in particular, the community of Autistic youth and adults -- a very common experience of ableism takes place when a non-disabled person dismisses characteristics of our disabilities as valid, legitimate, or genuine merely on the basis that he or she does not experience that particular characteristic.

And that is precisely what you did when you said that to me -- and to that other student. You do not have sensory processing disorder. To my knowledge, you are not learning-disabled. How then can you claim that if I would only "get over" my sensory issues, they would go away? You do not live with sensory processing disorder. You have never experienced sensory processing disorder, and it is impossible for you to experience what it is like to live as me. (To suggest that you could appropriate my life experiences and daily perceptions of the world would be arrogant beyond belief.)

You seem to think that if I would only work harder, my sensory issues would go away. If I were only strong and persistent enough, I could make my disability disappear. Well, if I were determined enough, according to what you yourself implied with your ableist remark, I could stop making up petty excuses for eccentric habits and get in touch with the real, adult world! (If the sarcasm is not evident, let me explicitly acknowledge it here.) Can you begin to comprehend how insulting that is? While this ought to be self-explanatory, it seems that I ought not to take any chances by assuming that you understand the depth of your offense.

By suggesting that I can "get over it," you directly imply that I am not putting enough effort into coping with the challenges that I face, thereby suggesting that I am lazy, unmotivated, or unwilling. By suggesting that I can "get over it," you directly imply that my disability is not real, thereby suggesting that I am wont to make excuses for atypical behavior. Are the pieces starting to fit together now?

You do not tell a disabled person or person with a disability to "get over" his or her disability. That remark is as ableist as the n-word is racist. It is inexcusable and unacceptable. For an educator, it is appalling and ignorant.

Do you remember what you said to me last fall? I hope you do. And I hope you never repeat it to anyone else ever again.

Blessings and peace,

Lydia

--

For those who are curious, the letter was in fact sent to the teacher, and the teacher responded, initiating a dialog.

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.

Advocacy and Ableism

Trigger Warning: Extensive discussion of ableism.

--

I mentioned to a family friend who has known me since early childhood that I've been involved with autism advocacy. She blinked, inclined her head slightly to the side, and asked, "Have you worked with children with autism?"

"No, actually," I responded in a calm, even tone. "I'm Autistic, and I know plenty of us." She stared, a little in confusion, as if not quite sure how to respond to that statement.

It's a question I get far more frequently than I like to admit or think about. Why does everyone automatically assume that because I can -- and do -- speak, and because I advocate, I must therefore be the relative or friend of an Autistic person, but not possibly Autistic myself? (And I have been diagnosed, in fact, by a neuropsychologist who specializes in ASD and who has sat on the board of an autism-related organization.)

And another thing. I had a conversation maybe a year ago with an acquaintance of mine, to whom I disclosed that I am Autistic. She responded, "But you're so smart!" And another acquaintance, at the same disclosure, interjected with, "But you seem normal to me." I'm expected to take this as a compliment. For some reason, looking normal makes me more human, because looking Autistic is a bad thing, something to be avoided, a taboo.

Why?

Some of you might not be familiar with the term "ableism." Some of you might be very painfully aware of it. For those who aren't, let me summarize. Ableism is the belief or attitude that an individual or group of individuals are superior or more human on the basis of their ability than people with disabilities, including Autistic people. Ableism is the belief or attitude that people with disabilities, including Autistic people, cannot have agency, cannot really advocate for themselves, should be pitied or cured, and cannot accomplish much so long as they continue to be disabled.

It's like racism, but against us. Me.

I grew up in a privileged suburb of Boston that around the 2010 census last year, still had over 90% White (Caucasian, European-American) people in the population. Less than 4% of people in my hometown were below the poverty line. Some houses went for a few million dollars. Walking around my hometown, you won't see homeless people or gang members on street corners. You won't see poverty or even much diversity. I hadn't thought about racism much because despite being Asian, I lived in a fairly homogeneous area and went to a regional school with a very culturally diverse student body.

That's privilege. It's not always recognized, acknowledged, or understood, but that's what it is. I never expected to be discriminated against on the basis of my race or religion (I'm a Protestant Christian in an area where a decent majority of the population identifies as some form of Christian), and never experienced that kind of discrimination. No racism here.

But ableism was a different animal altogether. I can't tell you how many times I've been told, "Well you're not really Autistic" or "You seem to be very high-functioning" or "I don't think you're really Autistic." And every time I mention my advocacy work, the mild look of curiosity, head tilted to the side, innocent, almost hesitant question -- "So do you know someone...?"

Why can't I be an advocate and Autistic? Why is it assumed that the only possible reason I would have any involvement or leadership in autism advocacy is having an Autistic relative or friend who certainly couldn't advocate for him or herself, and therefore I must advocate for this individual?

Parent advocates certainly have a time and a place and a valued opinion when advocating for their own children -- as minors -- or when allying with those of us who are Autistic in advocating on the larger level. I'm not writing this to disparage your role, undercut you as advocates, or accuse you of bad parenting. I'm writing this because I'm sick and tired of ableist attitudes -- whether from you or anyone else. (And certainly not all non-Autistic parents of Autistic children think in ableist ways. The problem is that plenty do. Many. Maybe even a majority.)

Think of it like this. Imagine an African-American/Black Civil Rights group led by a board and staff of White people, claiming to speak on behalf of all African-American/Black people, whose (White) leaders are thought of as revolutionary and innovative civil rights activists and advocates, and who rarely, if ever, include actual African-American/Black activists and advocates in their leadership or planning or policymaking. Or a LGBTQ Civil Rights group led by a board and staff of cisgender heterosexual people, claiming to speak on behalf of all LGBTQ people, whose (cisgender heterosexual) leaders are thought of as revolutionary and innovative civil rights activists and advocates and...

Both of those ideas would be abhorrent or objectionable to most African-American/Black people or LGBTQ people, and probably laughable even to potential opposition to the aims of those civil rights movements.

So why is this not only acceptable but the norm in autism advocacy?

Why is it assumed that Autistic people have no agency, are not competent, and cannot possibly understand the intricacies of advocacy?

Why does every person I meet assume that my advocacy makes me the non-Autistic relation to an Autistic person?

It's not something I can begrudgingly accept or resign myself. It's wrong. It's grossly unfair. It's ableist. And every single time it happens, I wince; my breath catches in my throat; my voice tightens; I can barely speak; the words struggle to slip past my lips; I look the person in the eye; I say, "Actually, I am Autistic. A large number of us are advocates."

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.

But I'm Not Ableist

(Trigger warning -- Use of the r-word and quotes of potentially triggering statements.)

You say, "But I'm not ableist."

Ableism.

When I wrote a short story during which an Autistic girl was picked up from school by her Autistic uncle, and I was told, "That would never happen. No one would let a man with Asperger's pick up their daughter."

When I suggested that someone I knew might be Autistic, and then mentioned that he had a girlfriend, and I was told, "He can't really be on the spectrum; I don't believe that. He drives, has a girlfriend."

When an Autistic person offered an opinion on a medical issue and was told, "You should know that people with your condition can't and never will go into the medical field."

This is what ableism looks like.

"You don't look Autistic."

Because apparently Autistic people have to fit your preconceptions of what it means to "look Autistic." But we are each individuals and may or may not fit those preconceptions.

"But you can talk... You're not really Autistic."

Because apparently talking and being Autistic cannot go together. But some of us can talk and some us cannot, and some of us who can talk choose not to.

"I couldn't tell that you're Autistic."

Because apparently Autistic people can never pass for normal. But we have been conditioned by society -- your society -- to believe that it is our job to appear as non-Autistic as possible (and some of us have gotten quite good at passing.)

"But you seem normal though."

Because apparently the standard for humanity is normality. But what is normality? It's defined by the people in the room around you. And who would want to be "normal" anyway?

"But you're really smart."

Because apparently being Autistic and being intelligent cannot go together without being a savant. But a pair of studies(1,2) show that intelligence is consistently underestimated in Autistic people of all diagnoses and ages, and we already knew that many Autistic people have average or above average intelligence.

"You're just saying that as an excuse for poor social skills."

Because apparently it's not possible for me to actually have challenges in social situations that aren't simply rudeness or manipulating other people. But there is a vast difference between people who refuse to interact positively with others and people who cannot navigate the social world of non-Autistics.

This is what ableism looks like.

Ableism is when Autistic people are told that flapping or rocking in public looks bad and abnormal and is a behavior problem.

Ableism is when Autistic people are unable to pass job interviews because making eye contact and small talk is more important than demonstrating ability to do the job.

Ableism is when Autistic people are relegated to institutions because of a community's unwillingness to integrate disabled and differently-abled people into their neighborhood.

Ableism is when Autistic people cannot disclose their diagnosis without facing prejudice and bigotry -- such as accusations of "making excuses," being "socially retarded," or being spoken to in a "baby voice."

Ableism is when Autistic people are unable to participate in the policy-making process when decisions that affect Autistic people are made with full rights and consideration as the non-Autistic people present because we're deemed "not competent" or unable to speak about the needs of other Autistic people.

Ableism is when Autistic people who can speak or are adults are accused of diagnosing themselves over the internet as if we are truly incapable of understanding ourselves.

Ableism is when Autistic people who can speak are dismissed as self-advocates under the false impression that no non-speaking Autistic people can self-advocate. (They can, and many do.)

Ableism is when Autistic people are prevented from accessing fully inclusive classrooms on the basis of lacking the intellectual or emotional maturity to be present with non-disabled peers.

Ableism is when Autistic people are told by non-Autistic advocates and professionals what to call themselves or how to refer to their disability, even if in direct contradiction to their stated wishes. (3)

Ableism is when Autistic people are told to "get over" their sensory issues because the non-Autistic people around them aren't bothered by the same things, and so the Autistics shouldn't be either.

Ableism is when Autistic people are told that they can't participate in certain activities or groups or clubs or events because their presence could be disruptive to the non-Autistic people there.

Ableism is when Autistic people are presumed guilty when suspected of crimes because of different behavior, mannerisms, or speech -- or because of a small number of highly-publicized cases involving Autistic people charged with or convicted of crimes.

Ableism is when Autistic people who can't speak are presumed retarded, ineducable, and incapable of accomplishing anything meaningful in life.

Ableism is when Autistic people accompanied by an aide are not addressed directly, but spoken to "through" their aides as if they are unable to express themselves.

Ableism is when Autistic people are considered exceptional for doing things like writing, singing, or playing sports, when we are perfectly capable of many seemingly-normal activities.

Ableism is when Autistic people are not taken seriously as advocates for themselves or other Autistic people because of their disability.

This is what ableism looks like.

And still you say, "But I'm not ableist."

--

Where possible, I've uploaded PDF documents for viewing through Google with great appreciation to PLoS ONE.

(1) Dawson M, Soulières I, Gernsbacher M A, Mottron L (2007). The Level and Nature of Autistic Intelligence. Psychological Science, 18(8), 657-662.

(2) Soulières I, Dawson M, Gernsbacher MA, Mottron L (2011). The Level and Nature of Autistic Intelligence II: What about Asperger Syndrome? PLoS ONE, 6(9): e25372. doi:10.1371/journal.pone.0025372

(3) Sinclair, Jim. Why I dislike "person first" Language. 1999.

What's Wrong With Disability Awareness

Further reading:
- Some Alternatives to Simulation Exercises
- The Wrong Message
- The Wrong Message -- Still

__________
I joined Georgetown University's disability awareness club, DiversAbility, now in its third year, upon arriving at campus. During one of our previous meetings, one of the club's officers mentioned that we will be hosting an "Ability Lunch," which had been done last year, in which people sit at different tables and simulate different disabilities -- for example, wearing a blindfold to simulate blindness or having one’s arm tied behind one’s back to simulate inability to use a limb or lack of a limb -- while eating lunch. I immediately raised objection to the idea, and was told that the discussion following the lunch included criticism of the event.

If that is so, if the flaws in holding such an event are recognized, then why is this event held?

I am in very strong opposition to the idea of the Ability Lunch for the same reasons that I stood alongside the Autistic community in 2010 when a well-meaning individual decided to declare Nov 1. as “Communication Shutdown Day.” The idea behind Communication Shutdown Day was that non-Autistic people could experience the social isolation and communication difficulties that Autistic people often have by not accessing online social networks or websites for the entire day.

Beside the fact that the Internet has provided an incredible forum and means for Autistic people to communicate with one another about issues that affect our community in ways that we were unable to access prior to the widespread use of social media and e-mail, the idea of Communication Shutdown Day in no way reflects the reality of living as an Autistic person.

A non-Autistic person spending one day without using social media will not understand the inherent differences and difficulties we face in social communication with non-Autistic people, the majority of which occur offline and face to face. A non-Autistic person who spends one day without using social media is not experiencing Autistic life. Autism is more than social challenges. The Autistic experience includes an array of sensory and information processing differences -- some of which are disabling -- and these are programmed into our neurological systems from birth through death. You cannot simulate being Autistic by shutting down Facebook for a day.

The mere suggestion that this is a way for non-Autistics to empathize with Autistic people is absolutely ludicrous. It is lacking in empathy entirely. If you want to get into our shoes, you need to understand the reality of what it is like to live Autistic day to day for a lifetime, and that is not something that can be done by a one day “simulation” of not accessing social media.

Similarly, it is absolutely ridiculous, if not outright offensive, to think that a non-disabled person can simulate a disability for an hour or two and therefore understand what it is like to live as a disabled person. The idea is well-meaning, but well-meaning people often blunder and harm in their good intentions in the absence of context and greater understanding. No amount of “good intentions” will change the nature of this event.

It is a farce. It is a feel-good opportunity for some non-disabled people to pretend to be disabled for an hour so that they can go home and say, “I understand what it’s like to have a disability.”

It is the equivalent of a non-Catholic attending mass, expecting to come away from the experience with an understanding of what it means to be devoutly Catholic. It might be a nice or interesting or strange experience, but in absolutely no way will this non-Catholic individual have any grasp on what it means to be devoutly Catholic in one’s lifestyle after going to mass once.

None of the non-disabled people coming to the Ability Lunch will have any true grasp on what it means to live as a disabled person in our society because they are not disabled. The very idea or suggestion that this “Ability Lunch” will somehow create this type of “in their shoes” empathy is unfounded and untrue. It won’t. The only way to do that is to have actual dialogues with disabled people to share experiences, coming as peers and equals at the discussion table. To listen to the voices of disabled people discuss what being disabled means in their individual lives. To recognize agency and give respect. To understand that it is impossible for a non-disabled person to truly experience disability, and that it is impossible likewise for a disabled person to truly experience not being disabled. To recognize the limitations of any type of disability “simulation” and to host disability awareness events that do not marginalize, diminish, demean, reduce, and devalue the realities of the varied experiences of disabled people.

No pity. No fear. No patronizing.

Nothing about us without us!

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.