30 May 2012

On Language

In the last couple of months, I've received an unprecedented wave of feedback in which it has been implicitly or explicitly insinuated that my essays on language and terminology have constituted a form of "language police." I'm not and have never been obsessed with micromanaging the language of everyone around me. I do have clear language preferences and very strong language preferences, and I have arguments for them just as people who have different language preferences can have equally valid arguments for theirs -- yet not even everyone who uses the same language that I do shares my core beliefs. I do wish that more people would also agree with me about the kinds of language I use (no different than wishing, say, that someone agreed with me about anything else, because it's nice when people agree with you), but I do not want anyone to use language that I "like" just because "Lydia likes that language" or "that's the right thing to say," but because they actually agree with my argument(s) for the language or otherwise have an equally valid argument for preferring that language.

Yet is language the be all end all? No. Is language some kind of litmus test or loyalty test to see who's genuinely part of "the movement" and who's not? No. The core ideas and beliefs that a person holds are far more important than the language used to express those ideas and beliefs.

But language is powerful and language is political. And when I or others, whether they use the same language as me or not, discuss the significance of semantics, it is intellectually and culturally irresponsible to trivialize discussions about language as unimportant and shallow. Whether we like it or not, using different language in different contexts with different audiences or interlocutors invariably alters perceptions through nuance, connotation, and cultural baggage than if another type of language had been used.

That is why these discussions about language are not merely important but necessary. The problems engendered by the presence of these discussions arise only when language is used as an almighty litmus test or the means of disempowering an individual, or prioritized as somehow more important than, say, accomplishing actual work that immediately benefits real lives such as removing someone from an abusive situation, finding housing for someone in need of a place to live, or guiding someone toward meaningful, integrated employment. Practicality, pragmatics -- these things weigh far more heavily on me than questions about language.

In the academic setting, it's entirely appropriate to discuss and debate the use of language. But who would be so arrogant as to interrupt a person in crisis in order to correct language because it was the "wrong" language? To be a member of the disability rights movement or the Autistic rights movement, or to be an Autistic activist or advocate or self-advocate is not defined around what language you use to discuss autism and disability. Framing the rights movement in this manner would be an egregious fallacy. There are very good and powerful arguments for why certain language makes more sense in the context of a civil rights discussion (and equally valid ones for other language), but the disability and Autistic rights movements are defined around guiding principles and a vision for social revolution, not homogeneous, mindless use of language.

Every individual has the right to self-determination. That is a hallmark of the disability rights movement, from as early as Ed Roberts and Judy Heumann. That right is inalienable and absolute, which means that every individual has an absolute right to self-determination in the language used and preferred. One's rights end only when they infringe upon the rights of others. There is no right to use bigoted language or language that one knows will upset someone else while that other person is present. Similarly, no one individual ever has the right to coerce other people into changing their preferred language. Yes, we have the right to make arguments and offer reasons for choosing one set of terms as opposed to another, but we never have the right to impose our choices or preferences onto anyone else.

If someone were to stop using certain terminology and begin to use the terminology that I use and prefer, it would be better by a thousand times if that person's choice was conscious and borne of conscience. There are right and wrong reasons for changing language. It is wrong and meaningless to alter your language solely for the sake of pleasing someone else or attempting to pass an imagined litmus test as a true believer and fellow member of the movement. Ultimately, focusing your attention on the actual or perceived attitudes or opinions of others will lead to insecurity, lack of resolve, and potentially self-doubt and self-hatred. It is only positive and constructive to change your language if the decision is one you have made in the absence of peer pressure, and because you have reason, whether or not you can or ever do articulate it, to want that language, to claim that language, and to prefer that language. You might even take pride in your language.

So be careful. Neither my word nor yours nor anyone else's is absolute and infallible, especially when it comes to language. You must be the final judge for yourself. Familiarize yourself with the arguments. You might even read mine. A good argument will both explain its rationale and implore the reader to consider its merits and thus adopt the language argued on the basis of those merits. But ultimately, all arguments are the product of opinion, not truth, not scripture. My arguments and essays about the use of language are my opinion. Other people happen to agree with my opinions. But whatever you do, do not take at face value anything that you hear or read, because there is no language-specific creed to the disability rights movement. Within itself, and even among specific disability groups, there are varying preferences for language, and in connection to the broader disability community far beyond the rights movement, ideas and preferences splinter further. It remains to debate, appropriately, whether such disparity is positive because of its diversity or negative because of its disunity and fragmentation. Perhaps it is even more complex and nuanced than that -- this disparity and range of preferences for types of language creates both positive and negative ramifications for our intersecting communities. Either way, while the power of language is undeniable, it is imperative that those with genuine concern for the rights of others understand language in its full context and refrain from furthering the marginalization of those within the community solely on the basis of the language preferred.

And to those who've felt attacked or marginalized by my own essays, or who've felt that my emphasis has been misplaced, let me add this in closing -- my arguments are exactly that. They are mine, and they represent my opinions alone. They are constantly incomplete and in evolution. But they only represent one strand of thinking. No one has singular claim to "right" when it comes to language, only the obligations of mutual respect for others' preferences and of educating oneself to understand better one's own reasons for language. Beyond that, it is the community's obligation to ensure that no individual or group of individuals creates or holds a monopoly on "correct" terminology. The community must place a priority on emphasizing the pragmatic challenges that we face rather than the linguistic and academic ones.

--

(I typed this from my phone while on a moving train. Thus, please forgive any typos or weird punctuation. I haven't checked.)

27 May 2012

You are not a burden.

To the person who found my blog by searching Google for "feel like i'm a burden aspergers:"

You are not a burden.

You are a human being, and your life can be rich, full, complete, fulfilling, and meaningful on that basis alone.

You have the same natural right to life and equality and access and opportunity as anyone else does, and anyone who claims that you are a burden is insecure and ableist.

You are beautiful beyond vision, talented beyond measure, intelligent beyond comprehension, and bursting with the amazing capacity to live well and meaningfully and to share your unique perspective and way of existing in the world with everyone you encounter.

You are not broken or defective or lesser. Don't believe anyone who tells you so, whether explicitly or implicitly, because anyone who says that you are less than because your neurology is divergent from a constructed norm is lying to you.

Your neurology is divergent from the accepted "norm" of human neurologies, but that's not a bad thing. You are okay the way you are. Your brain is beautiful.

You may learn differently than your peers, need certain supports, accommodations, or services in order to have full and equal access, think differently than your colleagues, communicate differently than your family members, or experience sensations differently than the other people around you.

But those differences are not bad. They are part of what makes your experience of life unique and beautiful.

You have the capacity for deep, unbounded empathy. You may be moved to action by egregious injustices, and you may be the first to speak up in the face of wrong. You may form brief connections with others that will impact them for a lifetime without you ever knowing, or you may find comfort and trust in only one or two friends over your own lifetime. You may take intense pleasure in solitude, and you may have the potential for wild creative exploits.

You will have struggles that non-Autistics won't face. And you will share some of your struggles with your non-Autistic peers. You may find community among other Autistic people, knowing that there are people with whom you can share space and communicate shared struggles and joys without ever speaking a word.

Your only debt to society is to change the world for the better, even if all that means is a perfunctory encounter with a stranger that leaves another's life a little bit better, another's worries a little bit less daunting and frightening.

You don't owe society anything else.

And you are not a burden to society if you need any form of accommodation to navigate this world. The society in which we live was not constructed around the needs and experiences of people like you and me. In fact, it ought to be the basic, minimum standard of human decency to ensure that you and I have equal access as everyone else. And sometimes that means making accommodations for us.

If a person in a wheelchair wants to enter a building, there should be a ramp long before he ever gets there. And if a Blind person wants to read a book, there should be an audio version long before she ever searches for it. Because that's making the world accessible for everyone instead of keeping the world accessible only for a few.

If I need written, visual instructions with clear deadlines to do my job, there should be no argument about it. That's not me creating a burden. That's me demanding my equal right to full participation. There's no one correct way to do things or experience life. To exist differently in the world does not make you a burden on society.

Society's burden is to compensate, however slowly, for its long train of abuses, disenfranchisement, marginalization, discrimination, dehumanization, and paternalism perpetrated and perpetuated against those who have been denied power, equal rights, and self-determination. That is the burden that society bears.

24 May 2012

In case you're wondering: General rant on inaccessibility

No, Autistic Hoya isn’t relocating to WordPress, at least not anytime in the near future.

What happened today is that I had a fantastic (and by fantastic, I mean downright awful and frustrating) experience trying to leave a comment on a friend’s blog that uses WordPress as the platform. This was by no means the first time this had happened. In fact, it was probably the dozenth or so this year, if not more. With each passing comment, I’ve grown more and more frustrated with my or my computer’s general inability to leave comments on WordPress-hosted blogs. I finally decided that the easiest way to solve this problem would be to create a WordPress account. Then, I ran into the problem that although I wanted to create only a username and not a blog, the system decided to break itself and commit suicide, forcing me to create a blog.

23 May 2012

Yes, Autistics have sex.

Dear people who keep typing things like "can autistic people have sex," "do autistics have sex," "can autists have sex," and "is it possible for people with autism to have sex" into Google and then clicking on my blog,

Yes, Autistics have sex, can have sex, and can want to have sex.

Some Autistics actually get married and have children through biological means, otherwise known as having sex. Some Autistics are gay, lesbian, bisexual, transgender, genderqueer, or pansexual, and they have sex too.

(Yes, some Autistics don't have sex or haven't had sex or don't want to have sex, but the reasons for that are as varied and diverse as for non-Autistics who don't have sex or haven't had sex or don't want to have sex.)

Being Autistic does not mean lacking the ability to have sex.

And no, asking Autistics if they've ever had sex or can have sex is not okay. It'd be inappropriate and rude to ask a non-Autistic, seemingly "normal" person if he, she, or xe has ever had sex or can have sex, and it's equally inappropriate and rude -- not to mention incredibly offensive and insulting -- to ask an Autistic if he, she, or xe has ever had sex or can have sex.

And for the sake of everything green on the earth, please stop Googling "can autistics have sex." Please.

Sincerely,
An annoyed Autistic blogger

18 May 2012

What they do to us is intolerable!

TASH New England's Better Supports, Better Lifestyles in Today’s Challenging World Conference on Friday 11 May 2012 at the College of the Holy Cross in Worcester, Massachusetts. From left to right: Emily Titon, Gregory Miller, and me.

The Friday morning session was called "What They Do to Us is Intolerable! A Discussion About Restraints, Seclusion Time Outs, and Aversives," and it was organized by Emily Titon, an amazing Autistic woman who in addition to serving on the boards of TASH national and TASH New England and the Rhode Island Advocates in Action, has also co-founded the Rhode Island chapter of the Autistic Self Advocacy Network.

(I was informed that I was co-presenting that this session after Emily had already told the conference organizer.)

I hadn't expected to be discussing the history of the Judge Rotenberg Center and its use of electric shock, food deprivation, prolonged restraint, and fear as forms of "treatment" while standing less than six feet away from the former JRC employee who has written a 250,000+ signature strong petition demanding an end to the electric shock "treatment." Gregory Miller is a man with the courage to speak against egregious violations of human rights even in the face of a lawsuit brought against him by the JRC's powerful army of lawyers and backed by the JRC's money.

At $250,000 each year per student, the JRC's revenue allows the institution to fund lobbyists, lawyers, parents, and staff to flood public legislative and regulatory hearings with brainwashed testimony built on a castle of lies and half-truths. That same fat pocketbook also gives the JRC the musclepower to effectively silence any would-be whistleblowers and prevent the truth about their methods from reaching the public.

But the walls protecting the JRC are slowly crumbling. While Massachusetts has repeatedly failed to pass legislation banning the use of electric shocks, we've begun to take small steps forward -- toward the ultimate and permanent closure of the institution.

New York, the state that provides the vast majority of the JRC's residents, passed legislation banning the use of electric shock on any residents from New York, though people from New York still comprise the majority of the JRC's students.

Matthew Israel, the JRC's founder, was forced to resign last year in a plea bargain after he faced perjury charges and charges of intentionally destroying evidence in a 2007 incident that resulted in the repeated shocking of two students who hadn't even engaged in dangerous or self-injurious behavior.

The Massachusetts Department of Developmental Services enacted into law regulations that ban the use of aversives, including electric shock, on any students admitted after September 2011, though the regulations do allow for the use of electric shock where it was included in court-approved behavior plans created before September 2011.

The United Nations Special Rapporteur on Torture decried the JRC's practices as torture after receiving a report from Disability Rights International.

The U.S. Department of Justice's civil rights division opened an investigation into the JRC in December 2010, though the investigation has produced little tangible.

And the Massachusetts Senate has repeatedly passed a ban on aversives, although this ban has never passed through the Massachusetts House.

Let's also not forget that first California, and then Rhode Island, prohibited the use of aversive interventions favored by Matthew Israel, in whose care at least six students have died as a direct or indirect result of the aversive intervention program, resulting in the JRC's final relocation to Massachusetts where the facility still stands today.

Last month, in a civil trial against the Judge Rotenberg Center, a judge unsealed graphic video footage of then-eighteen Andre McCollins receiving thirty-one electric shocks after refusing to remove his jacket. Footage of that video has received hundreds of thousands of views on YouTube.

Shortly afterward, Greg Miller, the former JRC employee who joined Emily and I at the TASH New England conference a week ago, wrote a petition demanding the end of electric shock aversives, which has received over 250,000 signatures to date. The JRC has decided to sue him in an attempt to silence him. They've accused him of defamation and making false statements, as well as being a disgruntled employee who was fired, when in fact, Greg resigned and has documentation of his resignation. Greg has made several media appearances in the last two weeks in the hopes of galvanizing the public further to action against the JRC.

Today, Massachusetts State Senator Brian Joyce, who actually represents the district where the JRC is located, filed two anti-aversives amendments to the budget that will be debated starting this coming Wednesday. The first of the amendments would solidify the DDS regulations promulgated last year by codifying them and giving further protection against potential suit. The second amendment is a complete ban on aversives, which the Senate has previously passed on multiple occasions. Massachusetts residents have until Wednesday or so to urge their State Senators to co-sponsor or support the anti-aversives amendments before they go to the floor for debate.

Also in this past week or so is the announcement of legislation jointly filed by New York Senator Martin Golden and Assemblywoman Joan Millman (S6294A-2011 and A9084A-2011) that would cut all state or public funding to any school, institution, or program that uses any form of aversives. Electric shock is specifically named because the legislation is in fact targeted at the JRC. As the majority of the JRC's residents are from New York, passing those bills could permanently damage the JRC's primary source of revenue, and possibly lead to the institution's closure because of inability to support itself financially.

In the wake of Andre's trial against the JRC and Greg's petition, several disability rights activists and community stakeholders have formed the group Occupy JRC, and are planning a 2 June 2012 rally in Canton near the JRC itself, at which Greg Miller will be one of the speakers along with disability rights advocates Senator Brian Joyce, Kat Whitehead (Community Alliance for the Ethical Treatment of Youth), Dan Fisher (National Empowerment Center), Ari Ne'eman (Autistic Self Advocacy Network), Laurie Ahern (Disability Rights International), Daniel Hazen (Voices of the Heart), and Joseph Sitinbull (Helping Others to Promote Equality).

Yet while cautiously hopeful that the JRC is in fact under threat of imminent closure due to the increased publicity around its use of torture, and mounting campaigns from both government and grassroots opposition to its practices, it is imperative to remember that thousands of people with disabilities continue to languish in institutional facilities and nursing homes across the nation where abuse and neglect come in many forms.

Cuts to funding for public service providers have resulted in unnecessary bureaucratic hurdles to full integration and meaningful community inclusion, meaningless day-habilitation programs, denial of necessary medical attention, and deplorable conditions inside institutions and group homes. Schools routinely subject students with disabilities to all forms of restraint and seclusion as mechanisms for "dealing with" students whose behaviors and learning styles diverge too much from the norm to be acceptable.

Our society has built a culture of complete lack of empathy for those who diverge from norms or typicalities, with the bricks of dehumanization and othering laying the foundation for a world in which these types of abuse are perpetuated.

05 May 2012

Do you remember the Autistic boy inside the bag?

If you do, you'll be nauseated by what you're about to hear.

Andre McCollins, a teenager with a disability, was asked to take off his jacket by staff at the Judge Rotenberg Center. When he refused, staff electric shocked him and he tried to hide under a table. They dragged him out and tied him face-down to a restraint board where he was kept for seven hours without a break, and shocked a total of thirty-one times. All but one of those electric shocks were for tensing up or screaming. He was hospitalized with acute post-traumatic stress, and his mother couldn't even use a cell phone or TV remote around him, because they look exactly like the shock devices staff use.

Another victim of the JRC was a girl with cerebral palsy who was also nearly blind. She was electric shocked for reaching for a staff member's hand.

The Judge Rotenberg Center in Canton, Massachusetts is a residential facility for children and adults with disabilities, including developmental, intellectual, and mental disabilities. They claim to "save lives" with the electric shocks, but it doesn't take an expert to realize that what the JRC really does is torture in the name of treatment. Not one other institution or program in the United States uses electric shock aversives.

I am Autistic, and watching the video of Andre's torture that aired in court last month terrified me, because I know that the people in the JRC are people like me -- people with disabilities -- and it's the fact that they have disabilities that's being used as an excuse for torture and abuse. I know one woman who considered sending her Autistic son to the JRC, and I have an adult Autistic friend who was nearly sent to the JRC. I'm horrified that the JRC is still in operation, especially because I live in the state where the JRC operates, and I want to see the JRC closed.

What happened to Chris Baker in Kentucky is a result of the same attitudes that allow the JRC to continue its operations -- the attitude that people with disabilities like Chris, Andre, and me are inherently broken, diseased, or defective, and that it's therefore permissible to treat us in ways that wouldn't be legal or acceptable to treat anyone without a disability.

Former JRC staff member Gregory Miller, who witnessed their techniques in person, has written a petition demanding the end of the electric shocks at the JRC. If you're like me and reading this sickened you, then take a look at the video of Andre's torture and then sign the petition to demand an end to the torture.

Greg is fighting the same fight that I am -- the fight to ensure RESPECT for all people with disabilities, especially in the name of treatment, therapy, or intervention.

Thank you,

Blessings and peace,
Lydia

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This was originally intended to be an email sent through the Change.org email petition update system, but the system appears to have malfunctioned. So I'm posting this here instead. Please forward this page by email, Facebook, Twitter, Tumblr, or wherever to anyone you know.