I’ve been blogging regularly for 3 1/2 years. I began this blog as a way to chart the process of understanding my neurology in the light of my Asperger’s diagnosis. For awhile, I talked about the physical nature of my condition, my strategies for adapting, and the ways I’ve learned to thrive, rather than just survive. After a while, the focus of this blog moved to advocacy and activism on behalf of autistic people and autism parents.

I’ve built a lot of bridges. I’ve supported a lot of people. I’ve made some good friends. I’ve gotten a lot of support and respect in return.

But something else has been going on behind the scenes of my life — something that I’ve only been able to articulate to myself, and to a few other people, in the past month or so. I haven’t quite known how write about it, because I haven’t quite known why to write about it. Do I talk about it to try to create change? To vent? To simply speak my truth? I wasn’t sure.

But now I know why I want to write about it. I simply want to talk about why I am so tired.

Over the past year and a half, I’ve been feeling more and more alienated from autistic community and the autistic civil rights movement. At this point, my alienation goes very deep — to the point that I rarely self-identify as autistic anymore. I largely identify as disabled, and I largely identify with the broader disability rights movement. If people ask what my disabilities are, I am far more likely to explain my auditory problems or vestibular issues than my autism. It’s almost as though autism has slid off the table as a word that means anything to me. And by saying that, I don’t mean that I’ve been recovered or cured, or that I’m in denial, or that I’m trying to go back into the closet, or any of that. I still have the same neurology. That will not change.

But it’s been a long time since the word autistic was really about my neurology. For the past three years or so, it’s been more and more about my identification with autistic community. My identity as an autistic person was formed in autistic community, it represented my belief that I belonged in autistic community, and it represented my assumption that autistic community reflected who I am. But I no longer feel that I belong there, and I no longer see myself reflected there. Because I now feel so deeply apart from the community, my autistic identity is fading. It simply seems to make no difference anymore.

I’m finally able to articulate why. It’s because autistic community is largely a youth community, and the autistic civil rights movement is largely a youth movement. And before you protest and tell me all about all the older autistics who are involved in the movement, let me say this: I am not talking about who is involved in the movement. I am not talking about the principles of the movement. I’m talking about the issues that are on the agenda for the movement and the action that is being taken to address them. These issues and actions revolve around youth. They do not address problems and needs that come with aging.

Just so it’s clear: I don’t have a problem with youth issues being on the agenda. I don’t have a problem with addressing issues facing autistic children, or talking about autistic students navigating the college experience, or looking at the challenges facing autistic young adults going out into the work force, or dealing with the oppression and isolation of autistic youth. After what I’ve done over the past 3 1/2 years, I hope that I don’t even need to say that. But I’m saying it anyway, so that there is no mistake.

I’m talking about a focus that is excessively narrow. Where is the discussion of issues facing older autistics — people who are in their 50s, 60s, 70s, and older? Where is the discussion of what happens to our bodies? Of the issues that arise when our aging bodies bring additional disabilities? Of the difficulties we face in the hands of the medical profession when aging means that people have yet another reason to not take us seriously? What happens when issues of aging, disability, and sexism intersect for older women? How do we navigate the healthcare system? How do we get support for ourselves while taking care of aging partners or parents? How do we advocate for them and obtain services on their behalf? And while we’re doing all this, how do we deal with the ageism within our community?

I have had conversations with younger autistics in which the ageism is very clear to me. I have had people say to me directly, “I don’t want to get old!” and “I don’t want to look old!” They say it as though it’s the most natural thing in the world to feel those things, with no consciousness of the destructive social construct they’re perpetuating, with no consciousness of the fact that in other cultures, elderly people are loved, and touched, and valued, and told how beautiful they are. If anyone dared to say, “I would never want to be autistic!” or “I would never want to look like that autistic over there!” people would be outraged, and rightly so. What about us? Are we not due that same respect?

I raise this issue and inevitably hear, “But we’re not all like that!” And then I have to say, once again, that I am not talking about individuals. I am talking about issues that are going unaddressed.

And then there is watching people laying into one another. I don’t have the heart for it anymore. I know that people feel like they’re under siege. I know that people are dealing with very deep levels of pain and fear. So am I. But for me, it’s a core value to respect the dignity of other people, even when my pain and my anger are so fierce that I can barely stand it. I know what that kind of pain and anger are like. I also know, from my own experience and my own work, that I can speak my pain and my anger in a respectful way so that others know that I see them as people walking their own hard road. Am I perfect at it? No. But I am sick at heart when I fail.

Over the past three years or so, I have found myself watching people attack one another, and it is becoming more and more acceptable, and it nearly makes me despair. Last week’s debacle showed me how deep the problem is. What for me is an obvious attack that disrespects my integrity as a person is to others a mere disagreement, a question of tone, a personal rift. I don’t even know how to begin to bridge that gap. There is a difference between saying “I’m not listening to you because I don’t like your tone” (a tool of dismissal that has no place in a dialogue) and “I can’t hear you because you’re screaming at me and taking out your pain on me, and all I can think about is defending myself.” But more and more, I’m seeing the two being conflated, and oppression being used as a reason to hurt one another. I can’t stand watching it anymore.

So the name of this blog no longer makes any sense to me, and continuing to update it feels as though I am working against myself and where I need to go. I am not journeying with autism. I am journeying into aging and disability and I have to devote my attention to that fact. I have to do all the things that are off the agenda of this community. I am not worried about my ability to take care of myself and those I love. But it will take a great deal of energy and attention, and I have to gather my energy and my thoughts, and prepare for this next phase of my life.

My desire is still to serve. While I won’t be blogging here, I will find another way to serve — perhaps in the larger disability rights community, which puts dealing with issues throughout the lifespan on its agenda. Perhaps with people in my local community. Perhaps by starting another blog at some point, and writing about a whole other set of issues. Perhaps something else entirely. I don’t know right now. But I do know that I need to rest, and reflect, and give myself some time to see what’s next. And I know that whatever I do to be of service to others, I have to feel replenished as well.

While I will not be updating this blog, I will leave it up, because I know that it has been helpful to many, and I hope it will continue to be. Thank you to everyone who has reached out with support, respect, friendship, and fierce disagreement. Please feel free to continue to keep in touch with me by email or via Facebook. And take good care of one another. I love you one and all.

© 2012 by Rachel Cohen-Rottenberg

Sunday: Someone launches an accusation and verbally attacks me in a group for a feeling I expressed, while in the same breath telling me that it’s too much to ask for oppressed people to be respectful. I am aware that, if I tell her to stop attacking me, I will be further attacked as an oppressor. I am aware that this fact leaves me with very few options.

I respond calmly so as to not escalate the situation and make it even more unsafe for everyone else. I thereby screw myself by not defending myself sufficiently. I also screw myself by failing to notice that no one is defending me.

Monday: I notice that no one has addressed the situation. I notice that no one has said, “Don’t lash out at Rachel.” I notice that no one has said, “Everyone deserves respect in this group.” I know instinctively that the situation cannot be safe without that.

I send private emails. I explain myself several times. I wonder why I have to explain myself several times. I realize that if I have to explain myself several times, the situation will not improve

Tuesday: I send a message to let everyone know that I am leaving the group. I do not want to be in a group that does not feel safe to me.

I am exhausted. I decide to take care of myself. I decide to further reduce the extent of my online participation. I remove myself from several other groups as well.

Wednesday: I am very sad at leaving the group. I realize that I would have appreciated one person standing up for me. I am very sad that I have stood up for other people so often, and that no one stood up for me when I needed it. I recognize that the parallel universe in which this type of reciprocity takes place is not the one in which I am living. I am aware that I often forget this fact.

Thursday afternoon: I express my sadness to someone in the group. Then I explain myself. I explain myself several times. I am vaguely aware that I have done this before in the very recent past and that perhaps it is not a good idea. After I have explained myself several times, I am told that everyone was just too busy to deal with my problem. It is then that I realize that I am correct: It is not a good idea to explain myself. I thank the person for her time.

Thursday evening, 10 pm: I am on Facebook. I see the people from the group chatting with one another on their Facebook threads. I decide to unfriend people in the group because I am hurting and it is triggering a lot of pain in my heart to see them chatting with one another when I cannot safely be part of the group. I would like to stop hurting. I would like to move on.

I go out on a limb and decide that it is okay to protect myself from hurting. I follow through on this realization. I take them off my friends list.

I feel as though I can breathe for the first time in almost a week.

Thursday evening, 11 pm: I am getting used to feeling as though I can breathe. I am thinking about what a great feeling it is.

Friday morning, 1 am: I am getting ready to shut down my computer and go to bed. A private Facebook message appears. It is from the person who said that everyone was too busy to deal with my problem. As I am reading the message, I am certain that the person has made a mistake and has sent me a message meant for someone else. I think of writing her back to let her know about her mistake. It takes me a full minute to realize that the message is actually for me.

It is a nasty mini-screed. It goes along the following lines: “How dare you treat people who are your friends and who support you this way? Does it make you happy? Are you having fun? I expected this from other people, but not from you.” And more in the same vein. I am blocked from responding.

I am aware that our definitions of friendship and support are somewhat at odds.

I am also aware that her words are calling up images of my third-grade teacher, who expressed disappointment when I acted like other kids because I was always so smart and well-behaved.

It is not a good memory.

Friday morning, 2 am: I realize that the mini-screed writer is not too busy to write me a mini-screed for protecting myself from further hurt, but has no time or inclination to stand up to the person who attacked me in the first place. It occurs to me that addressing the other person might have been more helpful to me.

Friday morning, 2:30 am: I notice that the mini-screed writer has assumed that my unfriending her was an act of aggression rather than self-protection. I wonder why, given that I am not predisposed to lashing out, and that I had expressed my sadness to her just a few hours earlier, she did not consider a more generous interpretation before sending me a nastygram.

Friday morning, 3 am: I reflect on the fact that, six days ago, someone was allowed to attack me with impunity, and that now I am being attacked for my attempt to shield myself from more hurt. I am perplexed.

Friday morning, 3:30 am: I puzzle over how unsafe it has become for me to step out of my role as the person who is a rock for everyone else, and to step into the necessity of acting on my own needs. I am aware that my husband has had precisely the same experience. I find this fact upsetting.

Friday morning, 4 am: I realize that I have been castigated for acting like a human being. I recognize that this is in conflict with the fact that I am a human being. I am wondering where that leaves me.

Friday morning, 5 am: I fall into a deep sleep.

Friday morning 10 am: I awaken and realize that my life has taken on a strangely surreal quality.

Friday noon: I set about my household chores.

Friday afternoon, 2 pm: I consider regaining my peace of mind by accidentally on purpose losing my computer.

Friday afternoon, 3 pm: I fantasize about living in a cabin deep in the woods, getting off the grid, and having my husband bring me news of the world in the form of fresh fish wrapped in the previous week’s newspaper.

Friday afternoon, 4 pm: I come back to the present and consider the implications of being a kind, reasonable, and helpful person who tries to make things right for people.

Friday afternoon, 4:30 pm: I realize how much I like the respect and appreciation that people give me for being this sort of person.

I realize that the respect and appreciation that people give me for being this sort of person are often in inverse proportion to the likelihood that they will be there to back me up when I need it.

I realize that because I am this sort of person, it appears that I am above it all and have no needs of my own.

I realize that because I am this sort of person, when I express the fact that I do have needs of my own, people often treat me as though I am asking for too much.

Friday evening, 5 pm: I recognize that it is not in my nature to be any other sort of person.

Friday evening, 5:30 pm: I realize that I am screwed.

Friday evening, 6 pm: I consider pretending to be some other sort of person so that I will not be screwed. I consider verbally attacking people and telling them that they have no right to tell me to stop. I consider sending nasty mini-screeds to people at one o’clock in the morning.

Friday evening, 7 pm: I reject these options.

Friday evening, 8 pm: It occurs to me that I have been an autism blogger for a long time. I remind myself that what I do takes a great deal of self-discipline. I am aware that I am carrying a lot. I recognize that I am very tired.

Saturday-Sunday: I think it might be time to make some changes.

© 2012 by Rachel Cohen-Rottenberg

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In his thought-provoking 2011 article, “The Rhetoric of Ableism,” James L. Cherney discusses the ways in which rhetoric creates and perpetuates the ideology of ableism, a set of beliefs and practices that make the able body the sine qua non of human worth and happiness. He argues that discrimination against disabled people is supported by the ways in which ableism is embedded in textual and visual representation, and that the project of deconstructing the rhetoric of ableism must take its place alongside activism that targets specific instances of discrimination. By analyzing ableist rhetoric, Cherney believes, scholars and activists can understand not only how ableism is perpetuated, but also how other forms of oppression are reinforced by similar tropes. He concludes that a thoroughgoing analysis of current rhetoric can result in neologisms that interrupt and transform ableist representations.

The author is an assistant professor in the Department of Communication at Wayne State University, where his areas of specialization include rhetoric and critical theory, particularly with reference to disability and the disability rights movement. In his article, he makes clear his desire to bring his expertise in the field of rhetoric to bear on the discrimination that disabled people face. Given that his interests are political, rhetorical, and ethical, he bases his analysis on the work of two thinkers whose interests mirror his own: Stuart Hall, a rhetorician concerned with the relationship between rhetoric and ideology (Makus 495), and Stephen Toulmin, a moral philosopher whose work focused, in part, on how human beings construct arguments (Stygall 96-98). Drawing from Hall’s definition of ideology as “the concepts and the languages of practical thought which stabilize a particular form of power and domination” (Hall 26, cited in Cherney 2), Cherney concerns himself with addressing the problem of how to critique ideological claims about disability that are considered self-evident and thereby outside the realm of rhetorical analysis. To address this issue, he begins with Toulmin’s definition of a “warrant” as a “self-authorizing statement” (Toulmin 46, cited in Cherney 5), and creates the concept of “rhetorical norms” — knowledge claims that are considered obvious and beyond analysis (Cherney 5). He then discusses three examples of widely accepted ableist rhetorical norms: “deviance is evil,” “body is able” (a reference to the notion that all ability resides in the body, rather than in the relationship between the body and the social/architectural environment), and “normal is natural” (Cherney 5-7).

As a writer interested in how language creates culture, a disability-rights activist whose primary mode of activism is the written word, and a person sensitive to the power of language, I am especially interested in the ways that Cherney articulates the problem of ableist thinking as rhetoric that poses as arhetorical, placing itself outside the realm of critique. In Cherney’s view, ableism is an exceptionally difficult ideology to name and to reject because it is “that most insidious form of rhetoric that has become reified and so widely accepted as common sense that it denies its own rhetoricity — it ‘goes without saying.’” (Cherney 2) For instance, in the minds of most people, it is simply a given that disabled people should become as able-bodied as possible. When attempting to critique such an idea, whose truth appears obvious, one comes up against charges of absurdity, as Cherney found when one of his professors attempted to dismiss his analysis of pervasive ableism with the retort “Next you’ll be telling me that those stairs discriminate!” (Cherney 4) Of course, the stairs do discriminate — against anyone who cannot walk. Moreover, Cherney addresses the ways in which purveyors of ableist rhetoric pose as value-neutral while leveling the accusation of partisanship at those who critique their rhetoric (Cherney 4) — a common experience for those of us who critique mainstream scientific or cultural work. I have often found myself stymied as to how to address rhetoric pretending to be above rhetoric; Cherney’s analysis is a reminder that, because all language supports ideological agendas and power relationships, the key is to a) critique how language works to uphold structures of power and b) create expressions that counter ableist representations.

With regard to creative expression, Cherney suggests that, in order to deconstruct ableism, it is not enough to engage in analysis; we must construct a new language. In a particularly apt turn of phrase, he writes, “Identifying ableism requires rhetorical invention, for to critique a rhetoric that goes without saying requires new words.” (Cherney 8 ) While Cherney lists a number of strategies that counter ableist tropes — disability narrative, critiques of mainstream cultural productions, new disability histories (Cherney 2) — he does not provide examples of what a new language might look like. However, he opens up the potential for new rhetoric by suggesting that, in our quest for a new language, we will uncover ableist rhetorical norms used against other minority groups (Cherney 10). While he does not follow up on the implications of analyzing the ways in which disability is deployed against other marginalized people, it seems to me that such a process can, indeed, lead us in the direction of creating the neologisms he hopes for.

Consider the parallels between cultural representations of genderqueer people and disabled people. In popular culture, genderqueer people are not only marginalized as a gender minority, but also by means of ableist rhetoric. For example, as discussed in the Questioning Transphobia piece “Radio Show Hosts Incite Abuse Against Trans Children,” a 2009 Sacramento, CA radio show featured two hosts referring to children with gender dysphoria as “idiots” and “freaks.” In coming up against this rhetoric, one might reflect on why it is used in this context. What is it about genderqueer and disabled people that brings out charges of freakishness? One area of commonality is that both groups are outside the easy dualisms that most people take for granted. Genderqueer people do not fit the gender binary, and this fact calls forth a great deal of hostility, as reflected by the responses to an article about “X” being added as a gender option on Australian passports. As noted in the article “Freaks and Perverts” on the A.E. Brain site, one reader said in response to the new category, “Male or female, that’s it! Don’t confuse yourself with another!” and a second said, “Sorry. Their [sic] are only two genders, male and female. Period. No debate. Deal with it.” This rejection of people who do not fit into an accepted dualistic paradigm brings to mind Robert Murphy’s analysis of the ways in which disabled people occupy a similarly liminal space in society at large, outside of the binaries that able-bodied people take for granted:

The long-term physically impaired are neither sick nor well, neither dead nor fully alive, neither out of society nor wholly in it… They are not ill, for illness is transitional to either death or recovery… The sick person lives in a state of social suspension until he or she gets better. The disabled spend a lifetime in a similar suspended state. They are neither fish nor fowl; they exist in partial isolation from society as undefined, ambiguous people (Murphy 131).

The fact that so many people feel such visceral discomfort and hostility toward anyone who goes outside of accepted dualisms raises the following questions: Would the problem be ameliorated by creating new language that is non-dualistic? Is it possible to create such language? Can we create new language that communicates ease with ambiguity and acceptance of paradox? And how might we critique the dualities in our own thinking?

Along these lines, it is worth pondering the ways in which Cherney helps to collapse the dualism between theory and practice. He is quite adamant in his view that theory — analyses of rhetoric and the ways in which ableism pervades our thinking — must be integrated into the disability rights struggle, for the simple reason that the ways in which we think about the world and the questions we ask determine the solutions we find. He makes an excellent case for combining the fight against specific instances of discrimination with the struggle against the views that inform them:

Because attacking the target requires forging coalitions with those who may oppose the target for other reasons, this strategically important move can actually help protect the underlying oppressive orientation from discovery, and eliminating the target can be confused with eliminating the oppressive view… Yet naming and calling into question the view itself raises the possibility of altering the very strands out of which the oppressive institutions are spun (Cherney 9).

Thus, in Cherney’s formulation, disability theory becomes an important component of the disability rights struggle — not simply a precursor or an academic exercise, but an integral part of the process. And certainly, the struggle itself generates its own theories and frameworks; after all, the social model of disability, a term coined in 1983, grew out of the activism of the Union of Physically Impaired Against Segregation (UPIAS) (Shakespeare 266). A dialectical view of the relationship between theory and practice reveals that practice generates theory, and that theory is part and parcel of practice.

Paradoxically, in its call for new kinds of rhetoric, Cheney’s analysis invites us to investigate the silences that surround the rhetoric we have. If ableist rhetoric is silent about the socially constructed nature of its assumptions, bringing those assumptions out into the open creates the possibility for speaking to the power relationships that underlie them. And given that ableist rhetoric attempts to silence its critics by diminishing their perspectives as partisan and absurd, we must consider all the ways to resist that silencing. Do we push up against it with words alone? With visual representation? Or do we simply assert the undeniable reality of our own bodies?

Sources

A.E. Brain. “Freaks and Perverts.” http://aebrain.blogspot.com/2011/09/freaks-and-perverts.html. September 15, 2011. Accessed April 23, 2012.

Cherney, James L. “The Rhetoric of Ableism.” Disability Studies Quarterly 31, no. 3 (2011). http://dsq-sds.org/article/view/1665/1606.

Hall, Stuart. “The Problem of Ideology: Marxism Without Guarantees.” In Critical Studies in Cultural Studies, edited by David Morley and Kuan-Hsing Chen, 24-45. London, England: Routledge, 1996.

Makus, Anne. “Stuart hall’s theory of ideology: A frame for rhetorical criticism.” Western Journal of Speech Communication 54, no. 4 (1990): 495-514. doi: 10.1080/10570319009374357.

Murphy, Robert Francis. The Body Silent. New York, NY: W.W. Norton & Company, Inc., 1990.

Questioning Transphobia. “Radio Show Hosts Incite Abuse Against Trans Children.” http://www.questioningtransphobia.com/?p=1443. June 3, 2009. Accessed April 23, 2012.

Shakespeare, Tom. “The Social Model of Disability.” In The Disability Studies Reader, edited by Lennard J. Davis, 266-273. New York, NY: Routledge, 2010.

Stygall, Gail. “Toulmin and the Ethics of Argument Fields: Teaching Writing and Argument.” Journal of Teaching Writing 6, no. 1 (1987): 93-107. http://journals.iupui.edu/index.php/teachingwriting/article/viewFile/835/807.

Toulmin, Stephen, Richard Rieke, and Allan Janik. An Introduction to Reasoning. New York, NY: Macmillan, 1984.

© 2012 by Rachel Cohen-Rottenberg

This graphic recently came across my Facebook page. It took me some time to discern all the things about it that are problematic.

At first, all I could see was a problem with the intent of the text: the idea that one has to choose between seeing the person and seeing the disability. Why should that be a choice? My immediate response was to reframe it as follows:

See BOTH the person AND the disability. Because there is nothing dehumanizing or shameful about a disability.

My rewriting speaks to the heart of the problem with person-first language and its insistence on turns of phrase like “person with disabilities” rather than “disabled person.” Such language betrays the assumption that disability renders one less of a person. If that assumption were not present, there would be no reason to foreground the fact that we really, really, really are people, and that one has to put the disability aside in order to see how really, really, really human we are. Of course, that rather problematic logic begs the question: How exactly does one pretend not to see a disability once it has made itself known? In most contexts, that would be called denial and, occasionally, delusion.

Once I got done with the text, I thought I had reached the limit of what was wrong with the graphic. But over time, I noticed something else. Barely visible behind each of the standing figures is the shadow outline of a person in a wheelchair (symbolizing the “disability,” because obviously, all disabled people use wheelchairs), while the “person” (whom we are supposed to “see”) is standing up on two feet.

In other words, being a person means being able-bodied. This assumption is hidden inside person-first language as well. After all, if I’m a “person with disabilities,” and you don’t look at the disabilities, then what I am without them? I’m able-bodied. Why? Because the very definition of able-bodied is to be without disability. Without the construct of disability, the word “able-bodied” would have no meaning at all.

But there is a third problem with the graphic, having to do with the way it represents and organizes the figures by gender. If you’ll notice, no two people of the same gender are next to each other. All the pairings are male-female. And all the figures fit into the gender binary, leaving no room for people who do not — which gets me to thinking, that if you put a genderqueer symbol in shadow behind each figure, you’d have an equivalent graphic for “See the Person, Not the Genderqueerness.” And in the logic of the graphic, a genderqueer person wearing a dress would be a woman, and a genderqueer person wearing pants would be a man.

When all is said and done, the slogan of “See the Person, Not the Disability,” is based on the absurd premise that disability can be separated from the person, leaving only that person’s humanity. The problem with this line of reasoning, of course, is that disability is inseparable from humanity. We all have bodies that are diverse, that are created in ways beyond our control, that change without our consent, and that are vulnerable to age, to accident, to illness, and to all of the contingencies of life. So if you want to see the whole person, look carefully at the disability, because that is where a core feature of our humanity lies.

© 2012 by Rachel Cohen-Rottenberg

Outrage for Akian: It’s about dignity
by Jillsmo

Note: Feel free to reprint this post anywhere you like, just please include the links to the sites I have at the bottom. I don’t need to be credited for it, but Stuart does.

I know I said I was tired of talking about autism, but this is something I just can’t stay quiet about.

I’ve spent a lot of time here talking about how one of the most frustrating things about autism, for me, is that when Child 1 is upset, he has so much trouble telling me why, that oftentimes I just won’t ever know. When he comes home from school upset, which luckily doesn’t happen often, I will do anything and everything to try to find out why.

Can you imagine if your sweet and happy autistic child started getting aggressive at school for no reason, how much you would try to find out why? Do you know the lengths you would go to for your child? I would do whatever it took, I can tell you that. Whatever it took.

I saw a video today, posted on reddit. It was of a father whose sweet and happy autistic child, exactly Child 1′s age, suddenly started getting aggressive and violent at school and he had no idea why. They had IEP meetings, they met with a Behaviorist, he worked the system just like he was “supposed to,” for 6 months. But when he got nowhere, he played a hunch, put a wire on his kid and sent him to school to record what happened there.

It turned out that his son, Akian, was being verbally abused by his teacher and aide in his classroom. I’m posting the video below, but I have to warn you that it is VERY upsetting. I had a hard time getting through it all, but I will sum it up for you.

It’s mostly Akian’s dad, Stuart, describing what happened, and you also hear some of the recording of the horrible things those people say to him.

They called him a bastard. These adults, whose job was to protect and help and teach children… they laughed at him, made fun of him and called him a bastard.  I’m horrified by this.

Stuart turned his recording over to the school district, and also the media. An aide was fired but the teacher was not. The school district has said that it has handled the matter appropriately and apparently they think the matter is closed.

Stuart doesn’t think the matter is closed. In the video he says directly to the adults involved: “I want a public apology for what you did to my son. I want your full name out. I want you to come forward. I want you to take responsibility for what you do and then I want you to resign…. Not for me, but so one day I can play this video back for my son and say, ‘Akian, you didn’t deserve anything that happened to you. These people are at fault.’ I’m not looking to sue anybody. I’m not going to file a lawsuit. It’s not about money. It’s about dignity. This is to reclaim my son’s dignity. You owe it to him.”

Let’s help him get the word out. Below the video I’m posting some links where you can get more information.

No More Teacher/Bullies A webpage set up to explain the video and the situation
No More Teacher/Bullies on Facebook
Stuart’s email address

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Update: Stuart has started a petition to change the law in New Jersey so that any teacher or aide who bullies a child is fired:

http://www.change.org/petitions/to-the-new-jersey-legislature-and-congress-pass-legislation-so-that-teachers-who-bully-children-are-immediately-fired

Please sign and pass on the link!

I find myself balking at the dualism of theory and practice. Surely, at least in the case of disability rights, disability theory is essential to thinking about how to solve problems, change cultural assumptions that lead to discrimination, and enable people to heal internalized ableism. I’m not sure that, when it comes to oppression, there really is a useful distinction to be made between thought and practice; after all, analyzing and critiquing oppressive norms like racism and ableism is part and parcel of creating change. For myself, reading disability theory has enabled me to move through discriminatory situations with a great deal more consciousness about what is actually going on (i.e. that it isn’t about me and “my problem”), and to therefore advocate for myself more effectively. When I can do so, not only do I help myself, but I also serve notice to people that the next disabled person who comes in the door may very well be prepared to do the same.

Perhaps the real issue isn’t the difference between theory and practice, but audience. For example, if academics are writing theory and it never goes beyond other academics and the pages of academic journals, then it cannot have an impact on ordinary people who need new frameworks in which to operate. This is a significant problem in academia. Except for my current graduate program, which is interdisciplinary and therefore oriented toward problem-solving, my experience in the field of humanities has been to be fired up with passion and outrage about the injustices of the world, only to hit the hard brick wall of the institution, which provides few opportunities for any sort of real-world practice. In fact, it was the presence of that wall that drove me out of academia for 25 years.

But my question about what constitutes activism goes far beyond questions of theory and practice into the mode of activism itself. For me, writing is my primary mode of activism, because it’s the way in which I communicate most effectively. It’s not the activism of talking to my legislators or organizing protests. It’s a quieter activism.

It’s the activism of replying to emails from parents, who ask about sensory issues, or about how to interpret their kids’ behavior, or about why certain language hurts.

It’s the activism of running the Autism and Empathy site, smashing stereotypes, and giving a place to voices that are all-too-often silenced in the popular media, in autism organizations, and in the scientific community.

It’s the activism of reflecting on my life, on my reading, and on my experience in a way that speaks to people who are just finding out that others feel as they do.

It’s the activism of building bridges with parents by letting people know that just as I need respect for my feelings and my process, so I will give them respect for theirs.

It’s the activism of creating a safe space on my blog, in which people who have never known safe spaces can express themselves without fear of being attacked for their perspectives.

It’s the activism of lifting up my voice and speaking out against murder, and abuse, and cultural violence against disabled people.

There are so many of us who cannot talk with our legislators, or organize protests, or do so many of the things that we tend of think of as activism. I am beginning to realize that defining activism is those ways is much too narrow. Of course, all those things are important. But they are not the only way to make change, and defining activism in those ways is to give in to ableist notions of what sort of action is worthwhile and what sort is not.

The fact is that it’s all activism. Every single piece of it.

Every disabled person who has the courage to ask for the accommodations they need at school or in the workplace is an activist.

Every disabled person who comes out of the closet and says, “This is who I am,” is an activist.

Every disabled person who works to defends his or her psyche against a steady onslaught of devaluation and dehumanizing messages is an activist.

Every disabled person who shares the words of another disabled person, and thereby helps to create a network of mutual support and pride, is an activist.

How could it be otherwise, when simply being disabled and loving our lives is a radical act?

© 2012 by Rachel Cohen-Rottenberg

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Perpetuating the Stereotype: Autism, Parenting, & Murder

by Brenda Rothman
Mama Be Good (mamabegood.blogspot.com)

On March 31, 2012, four-year old autistic Daniel Korby was allegedly killed by his mother. I originally wrote this essay just nineteen days before Daniel’s death, about George Hodgins’ murder.

Daniel Kahneman, in his book Thinking Fast and Slow, tells us that it takes as little as two occurrences of an event for our brain to form a pattern and conclude that the two events are normal. Two facts juxtaposed just two times and we believe that one fact causes another.

All we need are two news reports of “murder” coupled with “autistic child” and we believe it’s normal that a parent would kill an autistic child. Two statements that an autistic child is a burden and all the lives of autistic children are devalued. Two opinions that autism parenting leads to mental breakdowns and people believe that it is true.

Last week, police reported that George Hodgins, a 22-year old autistic man, was killed by his mother, 53-year old Elizabeth Hodgins, who then killed herself. After I read the headlines and absorbed the shock of this tragedy, I looked for the patterns that the news reports were forming about autism and parenting.

The San Jose Mercury News reporters, Lisa Fernandez and Joe Rodriguez, wrote that “Taking care of autistic children is hard enough, but caring for them when they grow up can test a parent’s resolve like nothing else.”

They stated that “Parents interviewed by this newspaper said they understood what would drive a parent of an autistic child to commit such a senseless act.”

The article quotes a mother of a 19-year-old autistic son as saying: “We don’t know what caused this mother to do this. But every mother I know who has a child with special needs has a moment just like that.”

Another mother is described as “luckier than parents whose children can’t function as well as her [22-year-old autistic] son can.”

The article ends with a quote by a father of a 23-year-old autistic man as saying, “This poor lady. [...] I was denied all these services that my tax dollars go to support. And then you just become a prisoner. You can’t ever leave the person in your care.”

Another mother of an autistic child penned this opinion in the Santa Cruz Sentinel: “And so there will literally be hundreds of other mothers who will come to the same breaking point as Elizabeth Hodgins.”

The Daily Mail quoted the executive director of the autism center that George attended as saying that “parents with autistic children are ‘very close to that line of going over the edge.’”

And so the pattern is established. An autistic child is a burden on a parent. An autistic child imprisons the parent. An autism parent will suffer admirably, reach her limit, and, possibly, kill her child. And people will accept this as understandable.

If you are an autistic, you will be scared to death of autism parents. And for good reason – apparently, we could go off at any time. If you are a parent (or potential parent), you’ll have a damaging perspective on what it’s like to be an autism parent.

Reporters have already framed the issue with “disability,” “burden,” and “sympathetic killing.” Those of us who have personal experience with autism need to take back the conversation. We need people to hear the other side of the story, those parents who do not believe that these events are normal. Those who don’t see autistic children as burdensome and imprisoning. We need reporters to interview autistics about this story. We need to hear autistics’ stories of being parented, well or poorly, and from those who believe that autistic lives have intrinsic value, hope, and joy.

I understand that tragedies sell news, but these reporters reflect a wider view of life with disabilities as pitiful, diminished, and burdensome. The reporters and editors had first shot at framing the issue. We need to take it back. We need to change the patterns. We need to challenge reporters with questions. We need to reframe the conversation.

Not merely to be cheerful or optimistic. Not merely to present a “balanced” view. But to prevent autistic lives from being devalued. To eliminate the perception that parenting autistic children is burdensome and hopeless. To encourage autistics that other kinds of parenting exists. To show parents that other kinds of autistic lives are possible.

To prevent another pattern of “murder” and “autistic child.”

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“Perpetuating the Stereotype: Autism, Parenting, & Murder” was originally published on Mama Be Good (mamabegood.blogspot.com) on March 12, 2012. Reprinted from Mama Be Good with permission from Brenda Rothman, author. All rights reserved.

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Special Permission to reprint “Perpetuating the Stereotype: Autism, Parenting, & Murder” to raise awareness of the murders of autistic and/or disabled persons.

You may reprint “Perpetuating the Stereotype: Autism, Parenting, & Murder” (and only this post) from Mama Be Good as long as proper credit and citation is given. To reprint, include the following reprint language listed below. This post may not be edited, but you may use excerpts. When reprinting this post, you must include the following reprint permission language at the end of the article. If the content will be reprinted on your website or blog, you must include a link to Mama Be Good.

Reprint Permission Language:

“Perpetuating the Stereotype: Autism, Parenting, & Murder” was originally published on Mama Be Good (mamabegood.blogspot.com) on March 12, 2012. Reprinted from Mama Be Good with permission from Brenda Rothman, author. All rights reserved.

****

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Evil. I know it’s an old-fashioned word. But it’s the only one that makes any sense to me right now.

I’ve been reading articles about the murders of disabled people, and I’m getting sick of the victims being defamed and written out of the stories of their own deaths. There was 22-year-old George Hodgins, an autistic man who is painted almost entirely as a source of endless stress. There was Daniel Corby, a four-year-old autistic boy who is painted almost entirely as a difficult child. There was Julie Cirella, an eight-year-old girl with cerebral palsy, who is painted almost entirely as a child in an agony of suffering that needed to end.

The comments to these stories feel like a punch in the gut every, single time. The mother must have been stressed. The mother must have been mentally ill. The mother must have been isolated and exhausted.

And? And? And??? How does that explain murder exactly? People are stressed, and mentally ill, and isolated, and exhausted, everywhere, every single day of the week, and most of them don’t kill their children. And what about the person with the disability, who was hugely stressed, hugely isolated, and hugely exhausted by virtue of living with, you know, THE DISABILITY ITSELF, and who somehow managed, despite the stress, and the isolation, and the exhaustion, and the lack of services, to NOT KILL ANYONE? Let’s not forget THAT little detail, shall we?

And what really, really pisses me off is when the murderers end up looking like victims. People have said, “The mother was a victim, too.” Excuse me? A woman who kills her son and commits suicide because she hates life with her kid has made herself a victim. Elizabeth Hodgins made a choice to put a gun to her own head. And when she made that choice, she decided to take her son with her. That was a choice. That was not inevitable. That didn’t just happen.

Daniel Corby’s mother allegedly drowned her son and tried to drown herself. That was a choice. That was not inevitable. That didn’t just happen.

Julie Cirella’s mother allegedly gave her child with a fatal peanut allergy peanut M&Ms, and then tried to kill herself with insulin injections, painkillers, and an electrical cord around her neck. That was a choice. That was not inevitable. That didn’t just happen.

Because, you see, there’s this little thing called responsibility. If you have a kid, you do not get to take yourself and your child out because you find life with the child too hard. You just plain fucking don’t. And the reason should be obvious: you brought the child into the world and the child is depending on you. Your life isn’t your own anymore. You have a kid and you’re the grown-up now. You don’t get to throw it all away because you’re too tired, or because you don’t get services, or because your kid is difficult. Any halfway decent parent understands this.

So when all the talk about lack of support, and mental illness, and stress, and how terribly difficult disabled people are is all over, what do we have left? I’ll tell you what we have left: We have DEAD DISABLED PEOPLE. People like me. People like you. People like your children. DEAD. And all the reasons adduced for why disabled people are DEAD don’t add up, because there is one explanation missing.

People do some evil, selfish fucking things in this world. Someone has to call murder evil. I’m not saying the people are evil; I don’t believe that people are either good or evil. But when their actions are evil, those actions need to be called evil, loud and clear. Because if the go-to explanations for the murders of disabled people are stress, and lack of services, and mental illness, we have no protection. NONE. And your children have no protection. NONE. And that means that we don’t have a society that respects us and our inalienable right to live.

That scares me. And it should scare you, too. Because once one life is cheapened, all life is cheapened, and no one is safe.

© 2012 by Rachel Cohen-Rottenberg

And of course, someone had to say it. Because, when these things happen, someone always does. According to 10News.com in San Diego:

“San Diego police sources told 10News Corby was a stay-at-home mother pushed to the edge handling a difficult child with autism.”

Well, that explains it. The autism made her do it. Actually, it was her “difficult” four-year-old who made her do it. Oh, yes. Somehow, a tiny, defenseless child turned a loving mother into a homicidal monster.

And then there are the comments on the news stories. Some of them are absolutely spot-on, condemning the murder without apology or explanation. But inevitably, there are the ones that begin with a version of the following:

“But you have to understand how difficult it is to raise a child with autism.”

And then there are the comments about services and the lack thereof:

“This just shows you what happens when parents don’t have adequate support.”

Yes, families don’t have enough support. Disabled people don’t have enough support. No one has enough support. And as long as disabled lives are devalued, we will never, ever get that support. So what happens in the meantime? We don’t get support because our lives are devalued. We get killed because our lives our devalued. And as long as people feel that without support, it is “understandable” that we are killed, our lives will continue to be devalued.

To say that a lack of services makes someone snap and commit murder is taking a disabled person, whose life is already devalued by the entire society, and saying that more disabled people will be killed if you don’t give services to people whose lives you consider a burden and tragedy and a waste of time.

Is someone really going to ransom a hostage whose life doesn’t matter?

All attempts to explain this tragedy hide from view an essential fact about becoming a parent: In having a child, you make a commitment that, even if you end up in the worst extremity, you’ll protect the child’s life. That’s a basic, sacred trust. The child didn’t ask to be born, didn’t ask to be difficult, didn’t ask to be disabled. When people don’t speak to that commitment and that trust, but start talking about how difficult the child was, and how the parents lacked services, I get really scared. Because there will always be people without adequate support. And if people can’t simply say, “I don’t care how bad the parent’s life is. The parent broke a sacred trust with the child and had no right to do so,” I don’t see that there is any protection for disabled people at all. It’s very frightening to me. It means that I live in a society that is nothing short of barbaric.

When a four-year-old child is drowned by his mother, it’s not the time to wonder why she did it. It’s time to condemn that she did, and it’s time to look at how much we devalue disabled life that a mother thought her life would be better with her son dead.

Because the problem isn’t the lack of services. The problem is the devaluation.

And how do disabled lives get devalued? There are so many ways, it would be impossible to list them all here. But let’s begin with language, because language is the way that we understand, well, everything. What is the language that people use to describe disability and disabled people?

Burdens on their families. Burdens on the taxpayers. Tragic suffering. Waste of money. Not fully human. Should never have been born.

What do you think happens when you dehumanize people? What kind of culture do you think you are creating? What do you think the outcome will be when people are treated to a constant and unrelenting stream of words like that?

I’ll tell you what happens. A four-year-old boy is murdered, and people blame his disability.

This is what you get when you call disabled people burdens.

This is what you get when you call disability a tragedy.

This is what you get when you call disability a waste of money.

This is what you get when you say that disabled people are not fully human.

This is what you get when you say that disabled people should never have been born.

This is what you get. A four year boy. Drowned.

This is what you get.

And in the face of this disaster, I have one question — and it is the only question that matters:

Is this what you want?

© 2012 by Rachel Cohen-Rottenberg

Special Permission to reprint “This is What You Get” to raise awareness of the murders of autistic and/or disabled persons.

You may reprint “This is What You Get” (and only this post) from Journeys with Autism as long as proper credit and citation is given. To reprint, include the reprint language listed below. This post may not be edited, but you may use excerpts. When reprinting this post, you must include the following reprint permission language at the end of the article. If the content will be reprinted on your website or blog, you must include a link to Journeys with Autism.

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“This is What You Get” was originally published on Journeys with Autism (www.journeyswithautism.com) on April 4, 2012. Reprinted from Journeys with Autism with permission from Rachel Cohen-Rottenberg, author. All rights reserved.

I want to begin by saying that I admire you.

I admire your passion. I admire your courage. I admire your commitment. And I admire the way you fight for who you are.

I am watching some of you take action in ways that I could not when I was young. I am watching some of you think in ways that I could not when I was young. I am watching some of your write and speak in ways that I could not when I was young.

It wasn’t that I didn’t have the ability or the passion that you have. I did. My heart burned with outrage at injustice, and my mind teemed with ideas that I could not write down quickly enough or speak fluently enough.

But I grew up not knowing who I was. I grew up not knowing that I was disabled. I grew up not knowing that I had a community of people just like me. I grew up not knowing that my struggles were not a question of personal failure. I grew up not knowing about systemic discrimination. I grew up not knowing how to take care of myself, to the point that I spent years healing in order to live the life of passion and joy that I have now.

My story is not unusual. It is the story of the autistics of my generation. It is the story of my autistic father and his generation. It is the story of his autistic aunt and her generation. It is a story that has gone on, without end, for countless generations. And it is a story that is seldom told.

I sometimes fear that, in a culture that celebrates youth, you will forget about us.

I sometimes fear that, in your drive to discover your own truth, you will feel that we have no wisdom to share with you.

I sometimes fear that, in your zeal to make change, you will feel that the elder must take the lead of the younger, instead of all of us marching together.

I sometimes fear that, in your struggle to break free, you will see us in the same light as your parents, whom you are working so hard to love, to separate from, and sometimes, to survive.

I sometimes fear that, because your lives have just begun, you will feel that our lives have already been lived, and that you will not be as concerned for us as for the people of your generation.

I sometimes fear that, as you wonder where to find your place in the world, you will believe that we do not have needs as great as your own.

I hope that my fears are unfounded. But in case they are not, please understand: I know that you feel you are far away from becoming us, but you will one day. And you will know that the longing for friendship, for love, for usefulness, for meaning, for safety, and for life itself never, ever ends.

You are our future. And we older autistics are our future. My autistic father is our future. My autistic great-aunt is our future. All who have come before are our future. Because if the future is to bring us into the light of our human dignity, it must always carry the past with it.

Tell our stories. Celebrate our triumphs. Carry on our struggles.

And don’t let anyone forget us.

© 2012 by Rachel Cohen-Rottenberg