28 November 2011

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

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 Asian, in regards to race, and Chinese, if you go by ethnicity. I am American if you go by nationality. I am Christian in regards to religion, and Liberal, if you go by politics. I am female. 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 Asian or American or Christian, and it is not an inherently bad thing to be Chinese or Liberal or female. There may be aspects or consequences of my identity as an Asian or American or Christian that are advantageous, useful, beneficial, or pleasant; likewise, there may be aspects or consequences of my identity as a Chinese or Christian or female 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 Asian, or that I am Chinese, or that I am American, or that I am Christian, or that I am Liberal, or that I am female, 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 Christianness, or that I have Liberalness, or that I have femaleness? 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 Asian, Chinese, American, Christian, Liberal, and female.

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 Christians choose to engage more actively with Christian culture and community, and others would prefer to avoid Christian-focused events or communities. Some Asians choose to engage more actively with Asian culture and community, 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.

20 November 2011

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!

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.