29 March 2013

Re: Reproductive rights, disability, selective abortion

(Trigger warning: Quote of ableist statement, discussed of forced treatment and eugenics, discussion of Nazis and murder.)

This was actually written in its entirety as a Facebook comment, but Facebook refused to allow me to post it into the appropriate thread from any internet browser or from my phone. So I posted it here instead unedited (except for the removal of the addressee's name). It wasn't intended as a post. 

__________________________

A 1999 literature review published in the journal Prenatal Diagnosis examining termination rates after prenatal diagnosis for five impairing conditions found that the highest termination rates were for fetuses diagnosed with Down syndrome at 92% (with a confidence interval spanning 91%-93%).(1) According to the Centers for Disease Control abortion surveillance report for the same year, 1999, the overall abortion rate was 256 abortions for every 1,000 live births, or 25.6%,(2) which is by any calculation far lower than the abortion rate for fetuses diagnosed with Down syndrome.

That disparity is the result of ableist attitudes that claim that certain experiences (i.e. those of able-bodied and neurologically typical people) are normal, ideal, and healthy, while any experiences deviating from a typical physical and neurological profile are presumed to be undesirable, lesser, inferior, defective, deficient, and or unhealthy. People with deviant bodies or minds have historically been marginalized as a direct result of these assumptions and attitudes, and continue to experience discrimination and oppression because of their actual or presumed impairments.

For example, as part of the Nazis campaign to create a pure Aryan race that led to the Holocaust, the first group of people targeted for extermination as hereditarily unfit to reproduce were the disabled, who were first subjected to forced sterilization and later to outright murder.(3) Closer to home for many of the people in this thread, the U.S. Supreme Court ruled in 1927 that forced sterilization of the disabled (especially the intellectually disabled -- people who used to be referred to as those with mental retardation) was not a due process violation.(4) That decision has never been overturned.

There are several core assumptions that underlie this profoundly disturbing history, many of which are reflected in your previous comments.

- Being disabled is a lesser state of existence. To be mentally or physically disabled is to lead a life inferior and lesser than that of an able-bodied or neurotypical person.

- Some people's lives are not worth living, and they would be better off dead -- "not suffered to live" -- than alive.

- It is possible to determine what lives are worth living and what lives are not.

- Disabled people are burdens on their families and on society.

- Parents always know best for their children and always act in their children's best interests.

The first three of these statements are tied intricately to an ableist belief system that undermines and devalues disabled lives solely on the external presumptions of non-disabled people of what those lives must be like, which is hardly a legitimate way to assess the quality of another person's life. If a (cis) man were to say that to be a man is better than to be a woman, and that all women must suffer terribly because they are not men, he would be quickly ridiculed for his presposterous, arrogant, and condescending presumptions. Yet when non-disabled people (or disabled people whose personal experiences and circumstances are different from those they are describing) make the assumption that a disabled person's life must be so terrible as a direct result of disability that it is not worth living, this utter denial of agency, presumption of incompetence, and condescending assumption is not treated as such; instead, it is legitimized as valid and objective.

Without living another person's life, you have absolutely no way to know what that person's experiences are like -- whether that person is happy or could be happy with the appropriate supports, whether that person is suffering or not, whether that person's life is meaningful and satisfying to them or not. Making the assumption that because someone might be disabled, or, say, severely impaired in multiple domains of functioning, that their life must therefore be insufferable, is a dangerous assumption. You do not know. Since you have not experienced that person's life, you have no grounds on which to make that statement save your own privilege as a non-disabled person (or a disabled person who does have appropriate and necessary supports in place). You can never make this assumption because you can never know.

You do not have the right to make decisions for other people based on your own lived experienced that are privileged as normative and ideal.

When people make the decision to terminate a pregnancy on the basis of a fetus's actual or presumed disability, that is not a truly free choice, because it presumes that a disabled life is lesser and undesirable. When people make the decision to terminate a pregnany on the basis of a fetus's female sex, that is not a truly free choice, because it presumes that a female life is lesser and undesirable. The only difference between the two situations is that women and allies will speak against the latter, and their voices will be acknowledged as legitimate challenges to institutionalized sexism, whereas disabled people and allies speaking against the former are routinely dismissed, derailed, and de-legitimized, if not outright erased, omitted, or silenced altogether.

The fourth of these five statements, you articulated quite explicitly in your comment, "I know people who chose to have a profoundly disabled child and they've basically given up their own lives......and horribly impacted the siblings of the child. Caring for the child uses up all the financial and energy resources of the family."

Let's start with unpacking each juicy tidbit of ableism in this one appalling statement.

- If you don't want to take care of your disabled child, you always have other options. You can put your child up for adoption; you can surrender your child to child protective services; you could even institutionalize your child. None of those options (especially the last one) make you a great parent, but at least you won't be the shitty parent complaining about your child's existence as a drain on your life. (And at least you won't be the even shittier parent who outright abuses or even murders your disabled child.)

- If you think having a disabled sibling is a burden, try being disabled and having a sibling who resents your existence and see how that feels. (Then again, given the prevailing assumption that disabled people can't actually have feelings, or if we do, they don't matter, while everyone else's feelings are so important, I guess this doesn't matter much. /sarcasm)

- Sure, paying for support services, therapy, or other types of treatment costs money. So does sending a kid to private school, signing up a kid for sports or music lessons, sending a kid to summer camp, hiring an academic or college prep tutor, paying for braces, paying for driving lessons, or, god forbid, sending a kid to college. Given, poor and working-class families are significantly disadvantaged in acquiring appropriate and necessary support services for their disabled children, but that's a result of intersecting classism and ableism. If your concern about having a disabled child is that your disabled child is going to cost your family money, I don't think you're fit to be having any children at all. Measuring someone's worth by how much they'll cost you seems pretty callous to me.

Regarding the last of the five statements, I won't deny that many parents (certainly not all) do believe in good faith that they have their actual or potential children's best interests in mind at least most of the time. That being said, parents still are not their own children, and will still never know their children as well as their children know themselves. Suggesting that parents should be afforded blanket permission to do whatever they like to their children is a slippery slope that allows for egregious violations of children's human rights, unnecessary and involuntary commitment to residential placements (that are inherently coercive by nature), forced and nonconsensual treatment that the children may not have ever wanted or chosen for themselves, and other harmful practices that can inflict lasting consequences on children in the name of "parental rights."

I think that about sums it up.

You have a good night.


____________________________
(1) Mansfield, C., Hopfer, S. and Marteau, T. M. (1999), Termination rates after prenatal diagnosis of Down syndrome, spina bifida, anencephaly, and Turner and Klinefelter syndromes: a systematic literature review. Prenat. Diagn., 19: 808–812. doi: 10.1002/(SICI)1097-0223(199909)19:9<808::AID-PD637>3.0.CO;2-B

(2) Elam-Evans, L., Strauss, L. T., Herndon, J., Parker, W. Y., Whitehead, S. and Berg, C. J. (2002). Abortion surveillance -- United States, 1999. Morbidity and Mortality Weekly Report, Centers for Disease Control and Prevention, 51(SS09);1-28. Retrieved from http://www.cdc.gov/mmwr/preview/mmwrhtml/ss5109a1.htm

(3) Gallagher, H. (2001). What the Nazi "euthanasia program" can tell us about disability oppression. J. of Disability Policy Studies, 12:2, 96-99.  doi: 10.1177/104420730101200206

(4) 274 U.S. 200; 47 S. Ct. 584; 71 L. Ed. 1000; 1927 U.S. LEXIS 20 (Carrie Buck v. John Hendren Bell, Superintendent of State Colony for Epileptics and Feeble Minded)

26 March 2013

Constructing Disability: Deviant Bodies, Deviant Minds, Disabling Societies

Trigger warning: Mention of the Judge Rotenberg Center and brief description of the JRC's practices, descriptions of forced medical procedures, sexual violence, and brief mentions of murder and hate crime. None of this is detailed, however. Proceed if you feel safe.

--

Constructing Disability: Deviant Bodies, Deviant Minds, Disabling Societies



This is a brief speech that I gave for Ignite Georgetown in March 2013 entitled "Constructing Disability: Deviant Bodies, Deviant Minds, Disabling Societies." The video is below, followed by a transcript. The transcript was done almost entirely by my friend Nadia, who is awesome, with only a few edits from me. (Thanks, Nadia.)

The topic matter here is part of a much larger work that I've been pulling together over the last several months. I'm still working on it and developing it, but I hope you enjoy this.






Transcript:
[laughter]

Lydia Brown: Hi. I'm Lydia Brown. I'm going to be talking today about the social model of disability, which is probably not something that most of you have heard of. The way that disability is usually talked about is as illness or as a health problem or medical problem. In fact, disability issues are usually listed under "health policy" and things like that.

So what I'm going to talk about is why that is the case, and the different ways in which disability is constructed--both rhetorically and culturally--into this medicalized model of disability. So that's known as essentialism, and what essentialism says is that disability is located--the problem of it--in the mind or the body of the person called "disabled". So the way to fix disability is to fix that person's mind or body so that they're "normal"--and that's how you fix disability. And that is essentialism, the medical model of disability.

Constructivism, the alternative, says disability is a social problem. The problem of disability is not located in the body or the mind of the person called "disabled," but it's located in a society that disables that person because they don't function, act, behave, or communicate in the same way as everyone else.

So the first and foremost example of this is deafness. So if everyone in the world were deaf, there would be no such thing as spoken language. Everybody would communicate in some form of dialectical sign language whatsoever. And there would be no reason that you would experience disability because you were deaf. You would experience the inability to hear, but it wouldn't be a disability.

Disabling impairment. So impairment can mean absolutely anything. For example, I have really bad myopia; I have bad astigmatism. I can't see any of you right now! But it's not a disability that's current at the moment because there's no stigma attached to the fact that I need glasses. But there is stigma attached to the fact that I am Autistic.

Disabling deviance. So for example, I have friends who have disfigurements, as in their bodies just look abnormal, but they don't actually experience any functional impairments. But they're considered disabled because our society says, because your body, your face looks "wrong", we're going to treat you as though you have stigma attached to you.

Disabling sexuality. The Queer community has a really long history of being pathologized. Homosexuality was listed in the Manual of Psychiatric Disorders up until the 1980's; being trans* is still listed in the Manual of Psychological [sic] Disorders. Women, other activists, and other civil rights and social justice people, who have fought against social structures of oppression, have historically been labeled as mentally ill or mentally incompetent, have been committed to institutions, and have been attacked on the basis of supposed disability, in order to discredit them.

So what is ableism? Ableism is the oppression of disabled people. Analogous to racism or sexism, it is systemic, not just individual, although it does happen also at the individual level. It is prejudice and discrimination against people because they are or are assumed to be disabled.

So how does ableism play out in society? Ableism plays out through disabling attitudes--so for example, the idea that, "Well, those people aren't like us; they shouldn't be in our schools". Or the idea that, "Those people, the ones who commit horrible crimes, must all be mentally ill, so we should lock them up in institutions"--that's a disabling attitude.

Disabling policies. In the law, the case of Carrie Buck was in the 1920s--the Supreme Court ruled that it's legal to involuntarily sterilize disabled people--still on the books, has never been overturned. Those are disabling policies.

Disabling communities. Is your neighborhood accessible and inclusive to people? Are people labeled "mentally ill" or "retarded"? Kept out of your schools? Are they kept out of your communities? Are people in wheelchairs or who have other forms of physical impairments unable to access the same materials as you? That is a community that is disabling people.

Disabling education. When schools actively work to exclude disabled students by placing them in a segregated classroom or segregated schools or denying them an education altogether by enacting abusive practices like restraint and seclusion on students, that is disable--that is disabling occurring in the context of education.

What about in academia? [audience cough] I talked at the very beginning about the way that people talk about disability. In academia, whether that's in scholarship or in research, if disability is thought of as solely a medical problem located inside someone's body, then academia is doing a failure to actual disabled people.

So how do we end this? What would the end to this--to disability mean? The disability civil rights movement since the 1920's has been struggling with that question. Because, if we were able to end the cycle of disablement happening in society, would that mean that disability no longer existed?

One of the things that's been happening is the fight for equal access. So, for example, do we have ramps in this building? Are there light options other than fluorescents in here? Is this material presented in a format other than visual up on there? I did not include pictures on here intentionally, because I wouldn't have time to describe them all.

Fight for legal equality. Are there laws like the ones around involuntary sterilization still on the books? Are there laws about declaring mental incompetency that strip people out of their rights? Are there laws that uphold practices of forced healthcare and of denial of education? Those laws need to be repealed.

What about inclusion? The fact that disabled people are not included in many workplaces, are not included in many communities, are not included in many schools, poses a huge problem to the millions of disabled people in this country right now. You need to--we need to be building inclusive communities that support everybody and enable access for everybody.

What about human rights? [audience member coughing] The Judge Rotenberg Center in Canton, Massachusetts, [coughing] electric shocks disabled people as a punishment. That is only one egregious example of many human rights abuses and murder and hate crimes enacted against disabled people across the globe every day.

So what does it mean to celebrate deviance? To celebrate deviance means that we need to change the rhetoric on disability from saying "this is a health or medical problem," and to say that this is a sociological process that needs to be challenged and deconstructed, so that maybe there can be an end to disability and that those who have impairments can experience full inclusion and civil rights in society. 

Thank you. [applause]

24 March 2013

Plea for Help from Arabists and Disability Activists

Dear fellow Arabists, disability rights activists, and critical disability theorists:

Assuming everything goes according to plan, I will be abroad in the Middle East (most likely Egypt) in a year from now for Spring 2014. I'd like to try an experiment of writing my blog posts for Autistic Hoya while abroad in Arabic (and I don't mean writing in English first, then translating; I mean, writing in Arabic). This is both purely for (masochistic?) fun and to help improve my language abilities.

Now as some of you may already know (e.g. the Arabic speakers and Arabists reading this), Arabic lexicon operates off of what is known as the "root" system, where similar concepts and words related to those concepts share the same root letters. Most roots are three-letter roots (though there are apparently four, five, and six letter roots as well). Root letters always appear in order, but may have other consonants and vowels (and suffixes and prefixes) inserted between and around them.

The root letters for "disability" are "عوق" or "3-w-q", so "disabled" is "معاق" or "m3aq." And that's fine with me. In fact, I used this word and permutations of this root in a solo presentation for Arabic class in the fall on the history of the disability rights movement, in a group presentation for Arabic class this spring on Ed Roberts's life, and in a solo presentation for my other Arabic class this spring about violence and murder of disabled people by family members.

Now, given that in addition to writing about disability in general, I also tend to write a lot about autism in particular, I'm running into a problem with the word for "autism" that appears to be in use in Arabic (including on the website of a Center for Autism in Jordan). This word is "التوحد" or "al-tawahhud," which uses the root letters "وحد" (w-h-d) attached to the concept of oneness, aloneness, etc.

(For reference, the Egyptian Autistic Society's name in Arabic is جمعية التوحد المصرية or Jam3iat Al-Tawahhud Al-Misriyya. It uses that word. So do the other centers, institutes, etc. related to autism in countries where Arabic is the predominant language.)

Naturally, I find this offensive.

While in English, the word "autism" derives from the Greek root "auto," meaning "self," as in "drawn into the self," or "trapped inside the self," which is equally offensive and for the same reasons, our language simply doesn't draw on such etymological roots as much as Arabic does (with roots embedded into every noun and verb and adjective and adverb, and even prepositions). The word "autism" has largely been reclaimed by actually autistic people.

So basically, here's my dilemma.

I'm not Arab nor am I a native Arabic speaker.

I am, however, Autistic.

And I'd like to refer to myself and to people like me, using a word that I don't find horrendously offensive and that, within the context of the Arabic language, doesn't have such terrible associations (with regard to what they imply about autistic people.)

I remember my friend Kassiane, who's been studying ASL for a long time, mentioning that there's only one sign she's ever seen for "autism/autistic" that isn't offensive, that doesn't imply brokenness or somehow being locked inside one's mind (which is a horrifically offensive and ableist idea). She said that while she defers to actually Deaf people on pretty much everything else ASL-related, she refuses to refer to herself in an offensive way.

Thus so here. I'm not intending to be appropriative or to barge into the communities of Arabs and native Arabic speakers as some type of knight in shining armor on a white horse with my idea of "Here is a Much Better Word to use because I Am Superior," but rather to find a word that uses a root or roots that are not offensive and don't carry the connotation of being trapped inside my mind and only aware that I, Lydia Brown, and no one else in the world at all, exist.

Here are my preliminary thoughts.

I'm thinking that if I/we/you can't produce a single word (noun and nisbah adjective forms, perhaps) for autism and autistic, perhaps it would be best to use some combinations of words as in, in a phrase, either noun-adjective or iDaafa construction.

This root, حرف, or h-r-f, has to do with slanting off of something or deviating from things, according to the extremely long entry in the Hans Weber dictionary. Some examples of this root are as follows:

الانحراف (al-inhiraaf) -- (noun) deviation or digression
انحرف (inharrafa) -- (verb) to diverge, deviate, depart, digress

I like the idea of using something deriving from that root, though I think it would best be used in a noun-adjective phrase or an iDaafa.

Here's the part where I, as a humble second-year undergraduate Arabic major, turn the task over to collaboration with Arabists, actual native Arabic speakers, and other disability rights/theory folks, for suggestions and actual work.

Please make good use of the comments section. If your browser won't allow you to comment using Blogger, shoot me an email to lydia (at) autistichoya.com with the name to publish your comment under, so I can have all the comments for this discussion posted to one place.

And if you know of any other efforts around this idea that I don't know about (either because I'm not fluent in Arabic and tend to flounder when searching the internet in Arabic mode or because they're occurring in some private discussions somewhere), please do share!

Thank you!

23 March 2013

This Is Why I Am Angry

Trigger Warning: Extreme violence, ableism, dehumanization, heterosexism, homophobia, hate crime,  murder, liberal usage of the f-word and other profanity, and a graphic and detailed description of violence leading to murder.

___________________

This Is Why I Am Angry




To the people who say that I am too angry, too bitter, too harsh, and too unforgiving --

I read three things this week that made me furious enough to want to hurl my laptop across a room and into a conveniently placed wall.

These things infuriate me. 

1.
The Autistic Self Advocacy Network published a report (PDF) finding widespread discrimination against disabled people in need of organ transplants. Cases like those of intellectually disabled Mia Rivera (who was eventually granted a kidney transplant) and autistic Paul Corby (whose request for a heart transplant was ultimately denied) provide damning evidence to support an indictment of ableism that kills.

2.
The United Kingdom sponsored a three-year study entitled Confidential Inquiry into Premature Deaths of People with Learning Disabilities, that found over 1200 avoidable deaths of mentally disabled people, more "rapid" and "premature" life and death decisions in the cases of mentally disabled people, and issuance of do not resuscitate orders because of a person's disability. The title of this news article is "Doctors put lower value on lives of the disabled, study finds."

In other news, the Earth revolves around the sun and Barack Obama is the President of the United States.

We already know how little our lives matter, if indeed, they matter at all. This is not news to us. 

3.
Steven Simpson is dead and his murderer will be serving a paltry term of three and a half years in prison.

On 23 June 2012, it was Steven Simpson's birthday and he was throwing a party to celebrate with the people who were supposedly his friends.

Eighteen-year-old Steven was autistic and gay, and had a speech impairment and epilepsy. He was bullied horrifically at school. He lived in his own apartment and went to school at Barnsley College.

Twenty-year-old Jordan Sheard knew Steven, but not well. He and two other friends showed up at the door uninvited, but were let inside anyway.

Sheard dared Steven to strip down to his underwear. Steven did. He was doused in tanning oil.

Partygoers chanted, "Light it, light it, see what he does!"

Sheard retrieved a cigarette lighter and set Steven on fire--specifically, he held the lighter against Steven's body and he flicked it on beside Steven's genitals.

According to another partygoer, Sheard had written homophobic messages of "gay boy" on Steven's forehead and "I love dick" on Steven's body while he was drunk, before he was set on fire.

Steven's neighbor, Shaun Banner, came by to check on him. Instead he found himself ripping off the young man's burning clothes, injuring himself in the process, and dousing him in a cold bath while waiting for paramedics to arrive.

Steven died two days later in the hospital from his burns, which covered 60% of his body. His father was with him.

Sheard tried to blame Steven for setting fire to himself.

The prosecutor wanted Sheard to be charged for hate crime. The judge disagreed.

Sheard was charged with manslaughter.

Manslaughter.

An infinitely lesser charge than the charge of murder.

And he was sentenced to three and a half years.

Three and a half fucking years.

For murder.

For cruel, hateful murder in which the victim was targeted specifically because of his disability and his sexuality.  

For murder. 

For fucking murder.

This, this is why I am angry. This is why I am fucking angry.

There is no room for dialogue or polite, civil discussion about murder, and the only justifications you could possible claim for why such "civil discourse" is necessary lie within the nexus of your own privilege, the privilege that means you don't have to worry about someone attacking and murdering you at your own fucking birthday party and then receiving a slap on the wrist.

If you are straight, if you are able-bodied and neurotypical, and one of your supposed "friends" were to murder you so viciously at your own birthday party, you can bet everything you hold precious that the perpetrator would be charged with murder and sentenced accordingly.

But you don't have to worry about that happening to you.

You don't.

I do.

I am angry not because I want to be, not because I enjoy it, not because it somehow makes me feel good that I could at any moment be the victim of a half-dozen hate crimes, but because the society in which we live has decreed that these things are simply part of life. That these things are acceptable. That these things, indeed, must be accepted. And I say, fuck that noise.

What does legal progress mean when we can still be murdered and our murderers receive sympathy for "a mistake," for "a prank gone wrong?"

The news coverage of Steven's death and Sheard's sentence has noted that representatives of the National Autistic Society and UK-based LGBTQ rights organizations have condemned what happened as a travesty of justice, have condemned his murder -- and let's make sure that we call this what it was, and it was a fucking murder -- as a hate crime worthy of punishment and prosecution as a hate crime.

But what if Steven were poor? What if he weren't a university student? What if he were a person of color? What if he were trans* in addition to being gay? What if he hadn't been a white man?

I would hope, I would hope that those same condemnations would be happening. But reality tells me otherwise. I know that his case, that his life, that his death, that his murder, would not receive half of the attention that it has from the media were these not also facts.

And even so, even despite the privilege Steven had as a result of being white and male-identified and male-presenting insofar as we can determine, his murderer, the piece of human filth who stole his life in a calculated act of cruelty heaped upon other cruelties, has essentially been exculpated by a legal system that won't recognize what he did as a hate crime, let alone punish him accordingly.

If you aren't outraged, there is something wrong with you.

If you aren't devastated, there is something wrong with you.

I am accused all the time of being too angry and too brash and too harsh.

I am told every day of my life, both explicitly and implicitly, that my life is not meaningful, that my life is not valuable, that I should be grateful for having been allowed to live.

To be dead is better than to be disabled.

"I'd rather die before letting that happen to me."

"If I got paralyzed, I'd kill myself."

In the wake of the Steubenville rape trial, what does it say about our society, about the perverse pervasion of rape culture, that the mainstream media has worked long and hard to mourn the loss of opportunities and a future for the rapists without making any mention of the potentially life-long catastrophic consequences on the woman they fucking raped?

When our murders are rhetoricized as accidents, as pranks gone wrong, our murderers are exculpated for fear of the privileged, non-disabled majority that the offenders won't have another chance, won't have other opportunities if we condemn them so much for these things.

But murder is murder, isn't it?

If you are white, straight, upper-class, Christian, college-educated, neurotypical, and able-bodied, (and particularly if you are a man, male-identified, or male-passing) then you have every reason to trust the justice system. To trust that the police will be there to support you and investigate crimes committed against you. To trust that prosecutors and judges will take your seriously and bring appropriate charges against people who have harmed you.

As you change each of those attributes to some other quality, the likelihood that you can trust this system exponentially decreases.

Why do missing white children receive a plethora of media attention, while missing Black children receive hardly any at all?

Why are mothers who murder their non-disabled children vilified roundly in the media, while those who murder disabled children are romanticized and excused from blame?

This is why I am angry.

This is why you should be, too.

I am not exaggerating or hyperbolizing when I say that our lives are at stake.

For as long as disabled people can be murdered by their doctors, by their family members, by their supposed fucking friends, and these horrific crimes merit at most a slap on the wrist and usually hardly any consequences at all, I will continue to be fucking angry.

Their lives deserve absolutely nothing less.

17 March 2013

Another example of power imbalance

At the Becoming Indigenous, Asserting Indigeneity symposium on Friday, the final two papers addressed a few particular examples of power imbalances adversely impacting indigenous people in the Americas:
  • Folk radio stations facing shutdown for illegal broadcasts, lacking the resources to purchase a license and rights to broadcast a particular frequency, leading to linguistic censorship
  • Film media produced about indigenous people being largely controlled by white people (and others who simply aren't indigenous), leading to tokenism in some cases and virtual cultural censorship in others 
  • Organizations representing indigenous people relying on government funding and grants, and other forms of state power, to fund programming and services and lend legitimacy to their work

I've noticed the same types of power imbalances in the disability communities (though particularly the autism community).
  • The autism conferences that attract the most attendees, presenters, exhibitors, and attention from media and policymakers are not the ones run or organized by autistics, but the ones organized primarily by non-autistic people, whether or not autistic people are among the presenters and speakers.
  • Tokenism and the self-narrating zoo exhibit trope -- i.e., disabled people should only speak when spoken to, when invited by the grace of non-disabled people, and about whatever they'll be told to speak about. Payment is an added bonus -- expected for non-disabled speakers and guests, offered inconsistently (and only by some conferences or hosts) for disabled ones. 
  • The films Wretches and Jabberers, Loving Lampposts, and the upcoming Citizen Autistic (produced by Geraldine Wurzburg, Todd Drezner, and William Davenport, respectively), all of which positively portray autistic people and the neurodiversity movement, were produced by non-autistic (and as far as I am aware, non-disabled) folks. (I think Dan Habib of Who Cares About Kelsey? and Including Samuel is also non-disabled.) To my knowledge, there's not an autistic-produced or autistic-written film of this kind out there anywhere. Maybe the Loud Hands Project will change that, but as of right now, that's where the status quo stands.
  • I've seen a couple of broader disability rights movement documentaries, and don't know if they were produced or written by disabled people, but the only film I can think of offhand that I know for certain to have been written by a disabled person is Nick Vujicic's The Butterfly Circus, which borders on inspiration porn (though I last saw it well over two years ago, so maybe I'm either wrong or it's full-blown inspiration porn).
  • Many non-profit organizations, including disability rights non-profits, receive a good portion of funding for projects and programming through government-sponsored grants--this is at least a partial reliance or dependency upon institutions of the state for the organization's operations.
  • Blogs written by actually disabled people are infinitely less well-trafficked and well-known than those written by non-disabled parents of disabled children or, in fact, anyone non-disabled at all.
  • Literature, whether more scholarly or mainstream, on disability theory, disability studies, disability policy, and the disability rights movement is either a) largely written by non-disabled people, or b) when it is written by disabled people, relegated to the margins as fringe, radical, or otherwise exceptional rather than the norm.



08 March 2013

On Simulations

I've seen this article about a new "autism simulation," called Auti-Sim, passing around quite a bit lately, usually accompanied with nice, snarky bits of commentary from fellow Autistics and allies. (Seriously, doesn't the name itself just make you want to retch a bit?)

I wrote a paper last month about disability and impairment simulations. Though not directly addressing Auti-Sim, it's probably still relevant in many ways.

Here's the PDF of the paper with white background and black text. And here's the PDF of the paper with black background and white text. I figured I should post that here for reference, and that it might be useful for folks.

02 March 2013

Honoring the Dead

Trigger warning: Murder, violence, abuse, descriptions of murders.

_______


Earlier this evening, I was standing in the cold in Farragut Square along with few dozen other members of the local disability community for the Washington DC vigil as part of the National Day of Mourning for disabled people murdered by family members or caregivers.

Me (Lydia Brown) speaking at the vigil.
I was asked to give a statement this evening. This is the transcript of what I said.



Hi, my name's Lydia Brown. I'm a student at Georgetown University, and I'm also Autistic. And I'm here to take a minute to talk about the reason that we're here tonight.



We're here tonight as a result of the very real civil rights struggle that we still have left to fight. When people tell me in the hallways at Georgetown, "but don't you have rights? Didn't they pass the ADA? I thought you could get the accommodations you wanted in school; you're going to be able to get a job; I mean, there's special ed;" that doesn't mean much to me, when all of the time, people like us are being killed for what they are. And when in the popular media the most common response to a disabled person's murder is, “what a relief it must be that society and their family no longer has [sic] to bear the burden of caring for them,” that type of rhetoric tells me exactly where we still are and the kind of fight that we still have, the kind of challenges that we still face.



As Jeff [Rosen] was just talking about now, the problems that we have as disabled people do not exist because of the ways that we think or the ways that we move or communicate, but those problems exist because of the societies in which we live. And when the societies in which we live are ones that devalue our lives, that dehumanize us, that tell us over centuries of history that our lives are not worth living, that our lives are not worth fighting for, and that our lives are tragic and not our deaths, then that is a world that we have to fight against. That is a mindset that has to be changed before we can have full equality in this society.



And so we're here tonight to take a few minutes, to pause, and to remember those people that we have lost from our community—to remind ourselves, to remind the world around us that their lives were valuable, that they lived rich and rewarding lives, and that their murders were tragedies. We are here to reaffirm our commitment to the fight that we still have. We are here to reaffirm the unity of our community in standing against the history of violence and murder against members of our community, and to remind us that there is still much work to be done. Thank you.

And thanks to the LeadOn update, there's a video of this (captioned, naturally):





Ari Ne'eman speaking at the vigil.
Image description: Tall, young white man with short dark brown hair and glasses in the front, facing the side, wearing a long dark coat. Behind him is a wooden tripod bearing a poster that reads, "Mourn for the dead ...and fight like hell for the living," followed by tiny print illegible that gives the names and ages of victims. Beside that tripod is a table with a bright blue tablecloth and dozens of small electronic tea-light candles, with a young white woman kneeling toward the table. She is wearing a huge fluffy bright blue coat and a lime-green knitted hat. Beside her is her multicolored bag. They are all on a grassy area.
Of the first image above: Young Asian woman with short black hair and glasses, wearing a dark blue overcoat and a light beige pantsuit, and an ochre-colored shirt, with a gray-haired man's head visible in the foreground.

And this is the list of those who were killed that Melody Latimer, ASAN Director of Community Engagement, read aloud (names and ages). About two-thirds of the way through, she was moved to tears, and two other vigil attendees took positions beside her as she continued, visibly fighting the urge to sob.

This list is incomplete. In addition to these names, we mourn today for countless others in our community who died at the hands of those who were supposed to care for them, and whose names we may never know.

Tracy Latimer, 12 years old, gassed by her father, 1993. Wilkie, Saskatchewan. Robert Latimer served 7 years in prison for second-degree murder.

Charles-Antoine Blais, 6 years old, drowned by his mother, November 1996. Montreal. Danielle Blais pled guilty to manslaughter and was sentenced to live in a halfway house for one year. She was then hired as a spokesperson for Montreal’s autism society.

Casey Albury, 17 years old, strangled by her mother, 1997. Feilding, NZ. Janine Albury-Thompson was convicted of manslaughter and sentenced to four years in prison, but her sentence was reduced to 18 months.

Pierre Pasquiou, 10 years old, pushed into the sea by his mother, 1998. Saint-Brieuc, France. Anne Pasquiou was given a three-year suspended sentence and served no jail time.

Daniel Leubner, 13, burned alive by his mother, September 1999. Cayuga County, NY. Michelle Davis was sentenced to 6 years in prison for manslaughter and arson.

James Joseph Cummings Jr., 46, stabbed to death by his father in the institution where he lived, November 1999. Red Bank, NJ. Mr. Cummings Sr. was sentenced to five years in prison.

Gabriel Britt, 6 years old, suffocated by his father, March 2001. Summerville, South Carolina. Terrence Britt served four years in prison for unlawful conduct toward a child.

Johnny Churchi, 13 years old, strangled by his mother, 2001. Hamilton, Ontario. Jadwiga Miskiewicz was sentenced to time in a psychiatric hospital for killing her son.

Angelica Auriemma, 20 years old, drowned by her mother, who first tried to electrocute her to death. December 2013. Brooklyn, NY. Ioanna Auriemma served three years in prison for killing her daughter.

Scarlett Chen, 4 years old, drowned by her mother, July 2004. Toronto. Xuan Peng, her mother, pled guilty to manslaughter, but was released after 30 months in prison. At the time of her release, the court ruled that she “doesn’t represent a threat to children.”

Tiffany Pinckney, 23 years old, locked in a basement and starved to death by her sister and brother-in-law, 2005. Mississauga, Ontario. Allison Cox was sentenced to 9 years in prison for manslaughter; Orlando Klass was sentenced to 2 years house arrest for criminal negligence.

Ryan Davies, 12 years old, pushed off a bridge by his mother in a murder-suicide. April 2006. Romiley, UK.

Christopher DeGroot, 19 years old, died of severe burns after he was locked in his parents’ apartment alone during a fire, May 2006. Albany, OR. Police suspected that Agnes and Nicolaas DeGroot deliberately set the fire, but the court allowed a plea deal and sentenced them to six months in jail for criminally negligent homicide.

Katie McCarron, 3 years old, suffocated by her mother, May 2006. Morton, IL. Karen McCarron was sentenced to 36 years in prison for first-degree murder, obstruction of justice, and concealing a homicidal death.

William Lash III, 12 years old, shot by his father in a murder-suicide, July 2006. McLean, VA.

Lakesha Victor, 10 years old, starved by her mother, August 2006. Hinckley, MN. Ludusky Sue Hotchkiss was sentenced to 32 months in prison, followed by 16 months of supervised release, for second-degree manslaughter.

Marcus Fiesel, 4, wrapped in heavy blankets by his foster parents and left in a closet to suffocate while they went out of town, August, 2006. Union Township, Clement County, Ohio. Liz Carroll, the foster mother, was sentenced to 54 years to life for murder, involuntary manslaughter, kidnapping, felonious assault, and endangering children. David Carroll accepted a plea deal and was sentenced to 16 years to life for murder and gross abuse of a corpse.

Ulysses Stable, 12 years old, throat slit by his father, November 2006. The Bronx, NY. Jose Stable was charged with second-degree murder.

Criste Reimer, 47, thrown from a balcony by her husband. Kansas City, MO. August 2007. Stanley Reimer was sentenced to life in prison, but will be eligible for parole after serving 25 years.

Jared Greenwood, 26, died of infected bed sores after being left in place and neglected by his mother. Bloomfield, NM. Sandra Greenwood was sentenced to serve two and a half years in prison for second-degree neglect. September 2007.

Francecca Hardwick, 18, locked in a burning car with her mother in a murder-suicide, October 2007. Barwell, Leicestershire, UK.

Naomi Hill, 4, drowned by her mother, November 2007. Connah's Quay, Flintshire, UK. Joanne Hill was sentenced to life in prison but will be eligible for parole after 15 years.

Shellay Ward, 7, starved and neglected by her parents, November 2007. Hawks Nest, New South Wales, Australia. Sharyn Ward was sentenced to life in prison without the possibility of parole for Shellay’s murder. Blakeley Ward was sentenced to 16 years in prison for manslaughter.

Maxwell Eyer, 2, beaten to death by his father, December 2007. Alton, MO. Johnny Garcia, Maxwell’s father, was sentenced to 44 years in prison for first-degree murder. Maxwell’s mother and Garcia’s girlfriend both received 5-year sentences for child endangerment, as they knew that Maxwell was in critical condition but did not receive help.

Calista Springer, 16, chained to a bed and abandoned in a fire by her entire family. February 2008. Centreville, MI. Anthony and Marsha Springer were convicted of torture and first-degree child abuse. Marsha was sentenced to 18 years and 9 months up to 50 years in prison for torture, and 95 months to 15 years for child abuse. Anthony was sentenced to 25 to 50 years for torture, and 10 to 15 years for child abuse.

Courtney Wise, 17, starved to death by her mother, February 2008. St Catherines, ON. Astrid Hueller was sentenced to six years in prison for manslaughter. The sentence includes pre-trial custody, so after the verdict she faced an additional five years in prison.

Ethan Scott Kirby, 3, beaten to death by his mother’s boyfriend, August 2008. Conroe, Texas. Chase Cannon was sentenced to 50 years in prison for murder, and will be eligible for parole after serving 25 years.

Tom Inglis, 22, died after his mother administered an overdose of heroin to him, November 2008. Dagenham, Essex, UK. Frances Inglis was sentenced to life in prison for murder, and must serve a minimum of nine years.

Christian Clay Jenkins, 14, given an overdose of oxycodone by his father. November 2008. Oak Hill, West Virginia. Henry Clay Jenkins was sentenced to life in prison with a possibility of parole for first-degree murder and child neglect resulting in death. However, the judge made a “mercy recommendation,” meaning Jenkins will be eligible for parole after serving 18 years.

Lexie Agyepong-Glover, 13, left in a frigid creek by her mother and died of drowning and exposure. January 2009. Manassas, VA. Alfreedia Gregg-Glover was sentenced to 26 years in prison for felony murder, felony child abuse, and filing a false police report.

Jeremy Fraser, 9 years old, died of recurrent leukemia after his mother withheld the medication that would have saved his life. March 2009. Salem, MA. Kristen LeBrie was convicted of attempted murder, child endangerment, and two counts of assault and battery. She was sentenced to forty years in prison.

Shylea Myza Thomas, 9 years old, starved to death by her aunt, who then hid her body in order to continue to collect money she received for Shylea’s care. March, 2009. Flint, Michigan. Lorrie Thomas was sentenced to 10 to 15 years in prison, and a fine of $11,538, for involuntary manslaughter, tampering with evidence, child abuse, and welfare fraud.

Pamela Camille Hall, 59, stabbed by her son-in-law, April 2009. Bassett, VA. James Miller was sentenced to life in prison.

Lloyd Yarbrough, 62, fed an overdose of prescription medication through his feeding tube by his wife, May 2009. Austin, TX. Katherine Yarbrough was sentenced to 10 years probation for “injury to a disabled individual.”

Peter Eitzen, 16, stabbed by his mother, July 2009. Blackiston, Australia. Beverley Ellen Eitzen was charged with murder but was acquitted because the judge found that she had been suffering a “major depressive episode” at the time of the murder.

Jeremy Bostick, 11, gassed by his father in a murder-suicide. Edmonton, Alberta. September 2009.

Tony Khor, 15, strangled by his mother, October 2009. Mississauga, ON. Seow Cheng Sin was charged with murder, but the case has not yet gone to trial.

Betty Anne Gagnon, 48, tortured to death by her sister and brother-in-law, November 2009. Edmonton, Alberta. Her sister and brother-in-law were charged with “unlawful confinement,” manslaughter, and assault.

Walter Knox Hildebrand Jr., 20 years old, died of a seizure induced by his brother’s physical abuse. November 2009. Willows, CA. Stuart Allen Hildebrand was arrested on suspicion of assault with a deadly weapon and “causing pain, suffering, or injury to an elder or dependent adult.”

Laura Cummings, 23, raped tortured to death by her mother and brother, January 2010. North Collins, NY. Eva and Luke Wright Cummings were charged with second-degree murder, predatory sexual assault, unlawful imprisonment as a hate crime, and “endangering a disabled person’s welfare.”

Jude Mirra, 8, forced by his mother to overdose on prescription medications. February 2010. New York, NY. Gigi Jordan has been charged with second-degree murder.

Ajit Singh, 12, forced by his mother to drink bleach. February 2010. London, UK. Satpal Kaur-Singh plead guilty to “manslaughter by reason of diminished responsibility.”

Gerren Isgrigg, 6 years old, died of exposure after his grandmother abandoned him in a remote area. Wiley, Texas. April 2010. Darlene Phillips was sentenced to 28 years in prison for murder, but will be eligible for parole after having served 12 years.

Leosha Barnett, 17, starved to death by her mother and sister, May 2010. Fort Worth, Texas. Kyreshi Stevenson, Leosha’s sister, was sentenced to 5 years in prison for injury to a child. Tasca Johnson, their mother, was sentenced to 15 years in prison for injury to a child.

Glen Freaney, 11, strangled by his mother. May 2010. Cardiff, Wales. Yvonne Freaney was acquitted of murder but admitted to “manslaughter by diminished responsibility,” and was allowed to walk free.

Payton Ettinger, 4, starved by his mother, May 2010. Greensburg, Indiana. Courtney Ettinger Tressler was sentenced to 10 years in prison for neglect.

Christopher Melton, 18, gassed by his mother in a murder-suicide, June 2010. Columbia, Maryland.

Rylan Rochester, 6 months old, suffocated by his mother because she believed him to be autistic, June 2010. Superior, Colorado. Stephanie Rochester was found not guilty by reason of insanity and committed to an institution.

Kenneth Holmes, 12, shot by his mother in a murder-suicide, July 2010. The Bronx, NY.

Zain Akhter, 5, and Faryaal Akhter, 2. Strangled by their mother, July 2010. Dallas, TX. Saiqa Akhter has been charged on two counts of capital murder.

Emily Belle Molin, 85, hit and run over with a car by her son. Darby Borough, PA. August 2010. Steven Frederick Molin was sentenced to 25 years in prison for second-degree murder.

Rohit Singh, 7, beaten to death by his father, September 2010. Bathinda, India. Gurmeet Singh was charged with murder.

Zahra Baker, 10, murdered and dismembered by her stepmother and perhaps her father, October 2010. Hickory, North Carolina. Elisa Baker was sentenced to a maximum of 18 years in prison for second-degree murder. Adam Baker was “voluntarily deported” to his native country, Australia.

Chase Ogden, 13. Chase and his sister Olivia were shot by his mother in a murder-suicide. Colorado Springs, CO. October 2010.

Karandeep Arora, 18, suffocated by his parents, October 2010. Sarita Vihar, India. Parents then committed suicide.

Chad Jackson, 25, starved and neglected by his mother, July 2011. Grand Junction, MI. Yodi Jackson is charged with second-degree murder and second-degree felonious abuse.

Julie Cirella, 8, poisoned by her mother, July 2011. Long Island, NY. Veronica Cirella is charged with murder.

Noe Medina Jr., 7 months, thrown 4 stories by his mother, August 2011. La Habra, CA. His mother, Sonia Hermosillo, was charged with murder.

Benjamin Barnhard, 13, shot by his mother in a murder-suicide, August 2011. Kensington, MD.

Jori Lirette, 7, decapitated by his father, August 2011. Thibodaux, Louisiana. Jeremiah Lee Wright, Jori’s father, was found unfit for trial and sent to an institution.

George Hodgins, 22, shot by his mother in a murder-suicide. March 2012. Sunnyvale, CA.

Daniel Corby, 4, drowned by his mother. March 2012. San Diego, CA. Patricia Corby was sentenced to 15 years to life for second-degree murder.

Melissa Stoddard, 11, suffocated in restraints that her father and step-mother routinely used. December 2012. Sarasota, FL. Both were charged with “aggravated child abuse with great bodily harm.”


And today, the day of the vigils, Betty Anne Gagnon's murderers pleaded guilty and will be sentenced on April 19.