14 November 2013

Autism Speaks and Representation

Protest of Autism Speaks at the Policy Summit at George Washington University. From left to right: Farrah H. (student at George Washington University), Patricia Chandler, Emily Titon (co-chapter leader, ASAN Rhode Island), Lydia Brown, Matt Young (chapter leader, ASAN Washington State), Natalia Rivera, and Laura B. Image description below post.

While we are discussing Autism Speaks and their latest kerfuffles over the revelation of their collaboration with the Judge Rotenberg Center (that's literal and not a joke!), the protest of their policy summit in DC yesterday, Suzanne Wright's horrific statement in advance of the summit, and John Elder Robison's resignation from their science and treatment advisory boards during the protest, I'd like to take a few minutes to discuss briefly the issue of representation within this organization.

I and other autistic activists who oppose Autism Speaks' philosophy and practices frequently emphasize the fact that this organization has never had and does not now have even one openly autistic person serving on the Board of Directors or working in a leadership role (as an executive or administrator).

1. Openly autistic leadership is critical in an organization that purports to represent autistic people. There is no shortage of openly autistic people in the world, nor in the more specific fields of autism research, disability service provision, policymaking, law, or nonprofit management. This should not be a particularly high bar to reach, and yet Autism Speaks has consistently failed to meet it.

2. A call for openly autistic leadership does not constitute a call for tokenism. If Autism Speaks were to find and appoint one or two autistic people to either perfunctory executive positions (titles without power or responsibility) or board positions, that does not mitigate their serious and long-standing lack of openly autistic leadership, nor does it suddenly mean that they have chosen to meaningfully represent autistic people.

3. Similarly, such a demand cannot be conflated with an absurd demand for a closeted autistic to out themself. There may well be closeted autistic people serving on Autism Speaks' board or working in leadership roles within the organization. (For that matter, there may be people who are undiagnosed or who do not otherwise identify as autistic, even if they might be externally judged by their associates to be autistic, in such positions.) There are many legitimate reasons, however unfortunate by circumstance, that autistic people cannot be safe in public disclosure of their disability status. Yet again, this does not mean that Autism Speaks should not be held responsible for their utter failure to meaningfully include or empower any openly autistic people. (And to this note, the possibility that there might be autistic people working at Autism Speaks who are afraid to disclose the fact that they are autistic at Autism Speaks raises yet further questions and continues to challenge the legitimacy of this organization.)

Any organization that is consistently and continually challenged in its philosophies, fiscal allocations, fundraising tactics, practices, and public statements by the very people it purports to serve and benefit is an organization that has little, if any, credibility.

The facts that Autism Speaks does not now and has never meaningfully included any openly autistic people in its leadership or decision-making process, and operates with callous disregard for the priorities and concerns of actually autistic people, are damning. Support organizations that support the priorities of autistic people, meaningfully include autistic people in leadership, and are supported by the autistic community.

For some alternatives, consider supporting the Dan Marino Foundation, the Autistic Self Advocacy Network (full disclosure: I work there), the Autism National Committee, TASH, the Autism Women's Network, the Autism Network International, or even the Autism Society. But I urge any socially conscious donor to avoid lending any credence to Autism Speaks; their credibility, I'm afraid, rather resembles the aftermath of an FBI firing range training session on their paper targets ​— utterly shot to pieces.

Further reading on Autism Speaks from this site:

Image description: This is photograph of seven people standing outdoors on a red-paved sidewalk, in front of a blue sign that says George Washington University Media and Public Affairs. The people appear to be a variety of genders, with one South Asian, one East Asian, one Latina, one Black woman, and three white people, carrying signs that bear colorful messages such as "Autism Speaks has no autistic leadership," Autism Speaks does not value autistic input," a pie chart of Autism Speaks' budget, "I want/be heard/I want/Autism Speaks/quiet" with PECS images, "Autistic People deserve better," and "Keep $$$ for autism local do not fund Autism Speaks."

13 November 2013

An Unholy Alliance: Autism Speaks and the Judge Rotenberg Center

Trigger warning/content: Ableism, violence, murder, torture, abuse of disabled people, electric shock, aversives. 

An Unholy Alliance:
Autism Speaks and the Judge Rotenberg Center

Lydia Brown

Autistic and disabled activists, as well as our allies, have for years criticized Autism Speaks' long history of dehumanizing rhetoric about autistic people, irresponsible financial practices, and unconscionable claim to represent autistic people without including any autistic people in their leadershi— in direct contradiction to the principles of the disability rights movement. I have written numerous times on the myriad of reasons why autistic people, writ large, not only decline to support Autism Speaks but also actively condemn their goals and practices. 

Given Autism Speaks' history of damaging PSAs that exploit autistic people and our families, as well as their continual refusal to meaningfully include autistic people throughout their leadership and decision-making process, I am rarely shocked when new information arises about their projects and programs. I was not shocked at their latest PSA, an over twenty-minute-long mini documentary ostensibly about non-speaking autistic people who type to communicate, but which in reality faced sharp criticism from high-profile non-speaking autistic Amy Sequenzia, who types herself. I was not shocked at their announcement of a policy summit in Washington DC this week that will in all likelihood ignore the concerns of real autistic people about education, employment, housing, healthcare, or community living. I was not shocked (though I was deeply saddened) to read founder Suzanne Wright's message yesterday in advance of that policy summit, which once again resorted to fear-mongering language like epidemic and national health crisis, to objectify autistic people as burdens on their families or tragedies for society.

But I was shocked and profoundly disturbed by the revelation that at Autism Speaks' Walk Now for Autism in Washington DC, the city where I live, they chose to host and feature the Judge Rotenberg Center as one of their exhibitors at a resource fair.

Let me reiterate that one more time in case the prior sentence was not sufficient to jar your conscience:

Autism Speaks featured the Judge Rotenberg Center as a resource for autistic people and their families. 

Here is a scanned image of their card (you can click for a larger image) from the DC Walk's resource fair, including the Judge Rotenberg Center (#15) on the list of service providers. (Image description below the post.)

For those who may not be regular readers of Autistic Hoya, let me elaborate on the history of the Judge Rotenberg Center. The JRC, formerly known as the Behavior Research Institute, was originally founded in 1971 by Harvard-educated psychologist Matthew Israel, who studied behaviorism under B. F. Skinner. Israel opened shop in California, taking in students with significant developmental, neurological, and behavioral disabilities with a no-expulsion, no-rejection policy. His methodology of treatment was predicated on techniques called aversive interventions  slaps, forced inhalation of ammonia, food deprivation, sleep deprivation, prolonged restraint, deep-muscle pinches intended to inflict maximum pain, and long-term seclusion. One of the more disturbing practices that Israel favors is called "behavior rehearsal lessons," in which students are coerced into producing unwanted behaviors solely for the purpose of subsequently punishing them. Essentially, aversive interventions operate on the same philosophy that some people apply to animals  if you pair an unwanted behavior with a painful stimulus, the unwanted behavior will go away. 

Except in California, one of Israel's students died as a result of his "treatment" methods. The BRI was forced to relocate, and Israel settled in Rhode Island, where his abusive practices continued. In the early 1990's, Israel had a brilliant epiphany  what if he were to use electric shock as an aversive? Rhode Island's regulatory agency refused to permit the BRI to subject its residents to electric shock punishments, and so Israel moved the facility once again to Massachusetts, where it has remained ever since. The BRI invented their own device, known as the graduated electronic decelator, which is intentionally designed to be more powerful and more painful than a police taser. Students are forced to wear electrodes attached to various parts of their bodies, and whenever they engage in any unwanted behavior (anything from head-banging to flapping their hands to getting out of their seat without permission), staff press a button that causes an electric shock. When the state of Massachusetts attempted to end this barbaric practice, Israel sued the regulating agency. When he prevailed, forcing the then-Commissioner of Mental Retardation to resign, he renamed the facility after the judge who oversaw the agreement  Ernest Rotenberg. 

At least six students with disabilities have died at the JRC either directly or indirectly because of the torture inflicted upon them in the name of treatment. The former and current U.N. Special Rapporteurs on Torture, Manfred Nowak and Juan E. Méndez, have condemned the JRC's practices as torture. The U.S. Department of Justice's civil rights division has been investigating the JRC since around the time that footage of the JRC's shock treatment (link has a photosensitive epilepsy warning in addition to the trigger warning for torture) was played in open court during a civil lawsuit against the facility. The JRC is the only facility in the entire United States that uses electric shock as punishment on disabled people  a form of abuse that would readily lead to public outrage if used on convicted prisoners or animals, but that remains largely unquestioned when called "treatment" and used on disabled people instead. 

People with disabilities, family members, and community advocates have been calling for an end to the JRC's abuses for decades. I have compiled a long list of links to articles, formal reports, court documents, and videos documenting the JRC's brutal practices. Of the myriad of abuses that occur in institutional settings, the JRC's are certainly among the worst.

And yet Autism Speaks had the gall to include the JRC as a "service provider" in their resource fair at the DC Walk Now for Autism.

This is the organization that is hosting a national policy and action summit to develop a national plan on autism in Washington DC this week. An organization that explicitly and unabashedly partnered itself with the Judge Rotenberg Center. Autism Speaks' history of excluding autistic people from leadership (up through the utter absence of any autistic people whatsoever on their board in the history of the organization's existence) ought to be troubling already  and their repeated insistence on justifications for violence against autistic people murdered by family members or caregivers shocking to the conscience. This alliance between Autism Speaks and the Judge Rotenberg Center is outrageous beyond belief.

I urge policymakers and community members interested in supporting autistic people and our families to support disability rights organizations led by disabled people. It is not possible in good conscience to lend one's support to an organization that not merely siphons money away from local communities and into research that does not benefit autistic people, but actively aligns itself with a facility with a widely publicized, well-documented history of brutal abuse and torture of people with disabilities.

Those of us who are autistic deserve a national plan on autism developed with us included at the table at every step of the way. We deserve a national plan on autism that seeks to benefit us rather than harm us. We deserve a national plan on autism that condemns abuses such as those at the Judge Rotenberg Center rather than encourages complacency with those practices, let alone directly endorses them. We deserve a national plan on autism that moves away from the language of pity, fear, and tragedy, and toward achieving equality, access, and inclusion in our communities.

Autism Speaks  it is well past time for you to listen. 

(For even more irony and another healthy dose of outrage? Autism Speaks actually issued a statement explicitly condemning the Judge Rotenberg Center about a year ago, following Andre McCollins's case against the JRC going to trial. Andre, who is autistic, was shocked thirty-one times in seven hours after refusing to remove his jacket. You can read the Autism Speaks statement here. Let that irony and outrage keep building.)


Image description: Two scanned images of a hand-held printed card are side by side. The background of both is white. The front side bears the Walk Now for Autism Speaks logo, with the motto, Research Awareness, Compassion, beside the event information  DC Walk Now for Autism Speaks Saturday November 2, 2013 The National Mall, 8:30AM Registration, 10:00AM Walk Start. Then there is more text, "Walk Now for Autism Speaks is a fun-filled, family friendly event and is Autism Speaks' single most powerful force to fund vital research that will lead us to the answers we need. This is our 13th annual Walk Now for Autism Speaks event in the Washington, DC community!" Then a picture of a tend with a big Autism Speaks banner. Then "thanks to our generous sponsors" followed by a variety of foundation and corporate logos. The back side of the card bears a header that says "Please join us in the RESOURCE Fair!" and has two columns under that, one with booth number, and one labeled Service Provider. There are 34 booths numbered, belonging to various autism-related organizations, centers, or service providers. Number 15, which is at the top of the second column, is the Judge Rotenberg Educational Center. Beneath the list is a satellite image of the walk area with various stations labeled. 

08 November 2013

Co-Opting the Movement: Autism Speaks, John Elder Robison, and Complicity in Oppression

Trigger warning/content: Ableism, quotes of ableist speech, violence, discussion of murder, eugenics, co-optation, internalized ableism, erasure, mention of heterosexism.

Are you in or near Washington D.C.? Join us on November 13th in protesting Autism Speaks! Details at the Facebook page.

Co-Opting the Movement:
Autism Speaks, John Elder Robison, and Complicity in Oppression

Lydia Brown

Earlier this year, the executive board of a student organization at Georgetown made the decision to support an autism awareness event featuring a speaker from the non-profit Autism Speaks in the name of supporting all organizations that "represent marginalized groups." This was incredibly disappointing but not surprising, given the organization's prominence on the national and international stage in autism advocacy. Perhaps more surprising was the announcement from the College of William and Mary this fall that their Neurodiversity Initiative will be bringing John Elder Robison to campus as a scholar-in-residence for the year. The official press release referred to Mr. Robison as one of the "most well-known and influential neurodiversity advocates," and mentioned that he will be co-teaching a course on neurodiversity at the college. Furthermore, the press release mentioned only in passing Mr. Robison's work with Autism Speaks, which is of immediate and profound concern to me for several reasons.

Firstly, Autism Speaks is not an organization that represents marginalized people in any way whatsoever. Autism Speaks excludes autistic people from its leadership and has no meaningful representation of autistic people among its several advisory boards. To suggest that Autism Speaks actually represents autistic people in any meaningful way would be ludicrous. There is not now and has never been a single openly autistic person on the organization's board or in the administrative leadership. The presence of one autistic person on an external advisory board comprised of twenty-nine other members constitutes tokenism at best and brazen mockery at worst. No reasonable person would dare suggest that an organization comprised entirely of men represents women's interests or that an organization led entirely by white people represents the interests of people of color, yet the same standard evidently does not apply to disability organizations despite the existence of many cross-disability and autism-specific organizations led by actually disabled people.

Taken from Autism Speaks's own website, where the names and biographies of its board of directors and advisory board members have been posted, it is easy to learn the following:
  • Autism Speaks's Board of Directors consists of thirty-four individuals, none of whom are openly autistic.  
  • Of the six senior-most executive staff, not one is openly autistic.  
  • In 2010, Autism Speaks appointed Mr. Robison, an openly autistic adult, to its Scientific and Treatment Advisory Boards.  Both of these boards intend to bring both professional and personal perspectives to reviewing research grant applications; however, on the Scientific Advisory Board, Mr. Robison is one of thirty-seven members, and is the only openly autistic person.  Similarly, on the Treatment Advisory Board, Mr. Robison is one of nineteen members, and is also the only openly autistic person.  
  • The eight members of the Autism Speaks Government Relations Team responsible for developing and implementing advocacy priorities are entirely non-autistic.  

Furthermore, the widespread and vehement opposition of actually Autistic people to both the philosophy and goals of Autism Speaks is incredibly well-documented. One need look no further than the plethora of websites, blogs, and other social media platforms led by autistic voices to observe the overwhelming animosity toward Autism Speaks from within the autistic community. This organization chose to threaten a lawsuit against a fourteen-year-old autistic girl for creating a parody of their website in order to silence her. This organization chose to appropriate a prominent autistic activist's writing without her consent and trivialize her rather justified demand to cease use of her intellectual property. This organization deliberately chose to erase a group of autistic activists from the story of their fight to eliminate ableist hate speech from Google’s automatic search suggestions. This organization certainly deserves no accolades as an organization somehow "representing marginalized groups."

Image description: A photograph of the head and shoulders of a young female-presenting Asian person with chin-length black hair and glasses, wearing a black polo-shirt, standing against a light wooden door with a dark overcoat hanging on a hook behind her as she gives a stoic expression to the camera. She is holding a yellow notepad that has a handwritten note reading, "I will not be complicit in my own oppression."

Secondly, Autism Speaks routinely relies on ableist rhetoric and fundraising tactics that promote fear-mongering and pity about autistic people rather than genuine understanding or acceptance. Comparisons of autism to deadly diseases, natural disasters, and car accidents do little to encourage support of Autistic people and everything to encourage fear and tragedy models of disability in direct contravention to the principles of anti-ableism, disability justice work, as well as the disability civil rights movement. In Autism Speaks’ Strategic Plan for Science 2013-2017, the authors use language that inaccurately refers to autism as a "disease," discusses autism’s "cost" and "burden to society," and speaks of autism as an "urgent public health crisis." This is language intentionally chosen to evoke fear.

Yet their rhetoric is not merely limited to fear-mongering, but also indisputably crosses into the territory of the unconscionable. Former Autism Speaks board member Harry Slatkin, whose wife, Laura, continues to serve on the Board of Directors, stated in an interview with Town and Country while still a board member that sometimes he hoped their autistic son David would drown in the backyard pond rather than "suffer like this all his life." Evidencing a pattern of similarly violent rhetoric, Autism Speaks is also responsible for the 2006 PSA "Autism Every Day" in which their then Vice President states on camera that she considered putting her autistic daughter in the car and driving off a bridge, and that the only reason she refrained from doing so was because her other, non-autistic daughter would have been waiting for her at home—her autistic daughter was in the room as she made these statements. Furthermore, the producer of this PSA explicitly admitted that the film was intentionally staged to portray negative images of autistic people and their families.

Only four days following the release of "Autism Every Day," pathologist Karen McCarron smothered her autistic daughter with a garbage bag. McCarron stated that she murdered Katie because her "autism had not been improving," had thought about killing Katie, that made an earlier brief attempt at suffocation, wanted to cure Katie, thought killing Katie would make her "complete" in heaven, and wanted to live without autism and thus had to kill Katie. Investigators found that McCarron was obsessed with different treatments for Katie. (See People v. FRANK-McCARRON, 934 NE 2d 76 - Ill: Appellate Court, 3rd Dist. 2010.Though it is not presently possible to draw a direct connection between Autism Speaks' PSA and Katie's murder, this crime and dozens like it only underscore how the kind of rhetoric that Autism Speaks favors only serves to recklessly endangers the lives of autistic people.

Yet, "Autism Every Day" was not a fluke incident, as Autism Speaks is also responsible for the 2009 PSA "I Am Autism," in which a voiceover claiming to be autism threatens to destroy marriages, bankrupt families, and prevent children from ever forming meaningful connections. (I have included the full text below this article.) These assertions that autism is a horrific tragedy or a are patently false, as evidenced by the actual lives of autistic people and their families. Furthermore, Autism Speaks released another PSA in 2009, "Neighbors," that strongly implies that autistic children cannot have friends unless they are subjected to compliance-based behavioral interventions to suppress naturally autistic movements—essentially, the message is that autistic people cannot be accepted while visibly autistic. Most recently, they released a PSA in 2013, "I Want to Say," that ostensibly gives space for non-speaking autistic people who use augmentative and alternative communication, but which received scathing criticism by a prominent non-speaking autistic activist for its utter failure to center the voices of autistic people at all.

Thirdly, in direct contradiction to the foundational philosophy of the neurodiversity movement, Autism Speaks is committed to the ultimate elimination of autistic people through preventing or potentially curing autism. Their mission statement explicitly states, "We are dedicated to funding global biomedical research into the causes, prevention, treatments and cure for autism." Suzanne Wright, one of the co-founders of Autism Speaks, has stated that the organization’s goal is to "eradicate autism for the sake of future generations." It is astounding to me that autistic people are disproportionately targeted for abuse in homes and schools, rape, and other violent crimes, yet Autism Speaks does nothing to combat these appalling crimes but instead chooses to funnel the vast majority of their research dollars and political clout into cure-oriented research in the hopes of eliminating autism. These problems are not caused because of autism but because of ableism. Organizations that promote ex-gay conversion therapy that supposedly turns gays into heterosexuals are roundly criticized and would certainly never be presented as representing marginalized people. The solution to institutionalized violence and oppression against the Queer community is not to enforce heteronormativity and gender essentialism, but rather, to challenge and deconstruct heterosexism, cissexism, and binarism. Likewise, the solution to the problems that afflict autistic people is to deconstruct ableist hegemony while promoting research and policies to improve access to and quality of support services, eliminate legal barriers to equal access and opportunity, and challenge attitudinal barriers to full participation and inclusion in society. These are not goals that Autism Speaks supports or funds.

Finally, I resoundingly reject the notion that either Mr. Robison's appointment through the Neurodiversity Initiative or the complicity of supposedly progressive organizations in supporting Autism Speaks' activities should somehow be exempt from criticism under the premise that all organizations and individuals should be given a platform to express their views and that constructive dialogue from all perspectives ought to be encouraged. It would be unequivocally clear that organizations like white-supremacist, neo-Nazi, or anti-Semitic groups do not deserve a platform or a space in public discourse, especially in spaces that exist ostensibly to benefit and empower marginalized people. An individual autistic person with close ties to organization that promotes an appalling vision of a marginalized group that is certainly not in alignment with even the most basic aspects of the neurodiversity movement has not only lent his voice to that organization but has been named as the public face and leader of a program supposedly committed to the empowerment of autistic people, and all this in the name of neurodiversity. This is incomprehensible.

A few weeks ago, in conversation with a stranger, I was asked if it wouldn't be possible to compromise by collaborating with Autism Speaks on issues where our work might overlap. This is not possible. It will never be possible for me to work with Autism Speaks for as long as their philosophies, mission, and rhetoric remain the same as they are now. Our most basic goals are fundamentally and radically different. For you to ask me to cooperate with my oppressor is deeply insulting. I refuse to submit to complacency with the dominant narrative of autism as advanced by Autism Speaks, and I refuse to make myself complicit in my own oppression. Palestinian queer activist Haneen Maikey, founder of Al Qaws for Sexual and Gender Diversity in Palestinian Society, stated unequivocally that it is impossible for Al Qaws to collaborate with Israeli LGBTQ organizations for as long as they refuse to acknowledge the power differentials that privilege them while maintaining the colonialist occupation of Palestinian spaces and enabling their co-optation of the Palestinian queer movement. So it is also with us. We cannot compromise our struggle, our movement, our fight for justice, by attempting a futile "compromise" with an organization whose ultimate aim is our demise. And even if Autism Speaks has absolutely no direct involvement whatsoever with Mr. Robison's activities at William and Mary, he has already been positioned as a leader in the neurodiversity movement, and this rhetorical positioning already serves to co-opt the movement with Mr. Robison's work, which is decidedly outside the neurodiversity movement and has been repeatedly criticized from within it.

For others, especially non-disabled, neurotypicals, to suggest that all "awareness" is good or that Mr. Robison's appointment is progress due solely to his being autistic, is to undermine all that we have fought for in our struggle. I urge you to resist this latest iteration of the co-opting that inevitably comes with any movement for social justice. Audre Lorde wrote that "the master’s tools will never dismantle the master’s house." It is not possible to reform the pathology paradigm from within the organizations whose very existence serve to perpetuate and reinforce it. When the framework itself is flawed, there is no room for compromise. Accepting or condoning Mr. Robison's appointment within the context of a Neurodiversity Initiative only further allows this act to legitimate our co-opting by ideas that are decidedly not neurodiversity. We are compelled, then, to speak boldly and strongly in opposition to any attempt to co-opt the neurodiversity movement, or any insidious strategy to garner the appeasement of the very autistic activists who founded our movement and continue to resist the violence of ableist oppression. We must condemn the demand to become complicit in our own oppression.

Other Autistic Hoya articles on Autism Speaks:

Full transcript of Autism Speaks' 2009 PSA "I Am Autism" (separate trigger warning for burden, epidemic, pathology rhetoric): 

I am autism. I'm visible in your children. But if I can help it, I am invisible to you until it's too late. I know where you live. And guess what? I live there too. I hover around all of you. I know no color barrier, no religion, no morality, no currency. I speak your language fluently, and with every voice I take away, I acquire yet another language. I work very quickly. I work faster than pediatric AIDS, cancer, and diabetes combined. And if you are happily married, I will make sure that your marriage fails. Your money will fall into my hands, and I will bankrupt you for my own self-gain. I don't sleep, so I make sure you don't either. I will make it virtually impossible for your family to easily attend a temple, a birthday party, a public park without a struggle, without embarrassment, without pain. You have no cure for me. Your scientists don't have the resources and I relish their desperation. Your neighbors are happier to pretend that I don't exist, of course, until it's their child. I am autism. I have no interest in right or wrong. I derive great pleasure out of your loneliness. I will fight to take away your hope. I will plot to rob you of your children and your dreams. I will make sure that every day you wake up, you will cry, wondering, "Who will take care of my child after I die?" And the truth is, I'm still winning. And you're scared. And you should be. I am autism. You ignored me. That was a mistake. 
And to autism, I say, I am a father, a mother, a grandparent, brother, a sister. We will spend every waking hour trying to weaken you. We don't need sleep because we will not rest until you do. Family can be much stronger than autism ever anticipated, and we will not be intimidated by you, nor will the love and strength of my community. I am a parent riding towards you and you can push me off this horse time and time again but I will get up,  climb back on, and ride on with the message. Autism, you forget who we are. You forget who you are dealing with. You forget the spirit of mothers and daughters and fathers and sons. We are the United Kingdom. The United States. China. Argentina. Russian. European Union. We are the United Nations. We are coming together in all climates. We call on all faiths. We search with technology and voodoo, prayer and herbs, kinetic studies, and a growing awareness you have never anticipated. We have had challenges, but we are the best when overcoming them. We speak the only language that matters—love for our children. Our capacity to love is greater than your capacity to overwhelm. Autism is naive. You are alone. We are a community of warriors. We have a voice. You think because some of our children cannot speak, we cannot hear them? That is autism's weakness. You think that because my child lives behind a wall, I am afraid to knock it down with my bare hands? You have not been properly introduced to this community of parents and grandparents, and siblings and friends, and schoolteachers and therapists, pediatricians and scientists. Autism if you are not scared, you should be. When you came for my child, you forgot. You came for me. Autism, are you listening?

27 September 2013

Literal Silencing

Trigger warning: Medical violence, abuse, ableism, profanity

Correction: The original version of this post stated that Kade Hanegraaf's surgery occurred at the University of Washington Hospital. The surgery actually took place at the University of Wisconsin Hospital in Madison, Wisconsin. Salon also published an article, quoting me actually, that contains more information from the surgeon.

Literal Silencing

Have you heard about Kade Hanegraaf yet? He's an autistic sixteen-year-old, who also has Tourette's, living in Appleton, Wisconsin, with his twin brother, Kyle, also autistic. And this week, the Wisconsin State Journal reported on a surgery forced upon him (link also has severe trigger warning) two years ago in 2011 at the University of Wisconsin Hospital that almost went unnoticed.


One of Kade's tics is screaming.

His parents said of him, "It was absolutely horrific. We couldn't go anywhere." So they forced him to undergo surgery to silence him. To make him quiet. Good. Quiet. Good. Quiet. Good. Quiet. Good and quiet. Quiet and good. Good. And quiet. For them.

They made it about them. 

If screaming was a conflicting access need, there are other ways to address the issue than forced surgery. I've heard from other autistic people writing that they learned coping skills and ways to avoid some types of self-harming, for example, from other autistic people. Noticeably not from therapists, clinicians, or other professionals.

Was the screaming harmful to Kade? Did Kade want the procedure? Did Kade want to stop screaming? Even if the answers to these questions are yes, neither the news article nor the surgeon's published academic article (trigger warning on this article as well, and it's the full text as a PDF) mention anything whatsoever about seeking consent from Kade. 

(And yes, the surgeon, Dr. Seth H. Dailey, who teaches in the Division of Otolaryngology-Head and Neck Surgery, Department of Surgery, at the University of Wisconsin School of Medicine and Public Health. Despicable.)

They claimed the surgery was reversible. Who the hell knows? That may not be true, and even if it were, that doesn't justify performing surgery without the patient's consent.

The surgery was performed because Kade was an inconvenience to his parents.




I haven't done math in years, but the calculus seems to go a little like this:

Inconvenience + legally enforced power = medical torture

Solution: Justified.




This is torture. To invade someone's body in total violation of their bodily autonomy and perform nonconsensual, involuntary medical procedures on the whim of another person for what amount to purely cosmetic purposes.

But because Kade is autistic, anything goes. Anything is treatment. Anything is permissible. His body is not his own; it belongs to his parents. His life is not his own; it belongs to his parents. His very existence is a burden and must be dealt with accordingly. If he creates further inconvenience beyond existing, he can be, quite literally, silenced. He is not a human being with autonomy, agency, and the ability to communicate consent or lack thereof.

His communication doesn't matter. His parents did not choose to engage in communication with their son. Instead, they chose to physically, medically, pristinely, callously, clinically cut out his voice from his throat.




This is morally reprehensible. It ought to be appalling to anyone with even the most minute conscience or shard of empathy for fellow human beings. It is horrific and hideous. It is the epitome of selfishness on the part of the parents. This is an outrageous violation of human rights and bodily autonomy, and there is no conceivable justification for any of this.

But if we can be silenced in public discourse, erased from academia and scholarship, segregated in special education classrooms and residential treatment centers and institutions, hidden in sheltered workshops, and objectified as passive recipients of services and treatment and a future cure for who we are...

Then why not literally silence us?

Why not?




Assault the subaltern, those who have no position whatsoever to challenge structural power, because you know we can't fight back. We must submit, quietly, without protest, to the surgeon's hands, to the parents' unilateral, selfish decisions, because we have no agency, we have no feelings, we have no choice, we have no ability to make a choice, we have no self, we have no being, we have no voice, we have no humanity, we are nothings, not-humans, simply occupying space and lucky if we are ignored as we usually are anyway.

It's when we're noticed that it's dangerous, because if we're noticed, we can be stamped out of existence, and I mean that deathly deathly deathly literally because our lives are disposable. (even especially especially especially by doctors)

I think about Kade in that operating theater and I want to cry but I already spent part of yesterday crying and I've already overused my quota because I'm not a Real Person so I don't get to cry...

And I wonder if it felt like this?

Course you gotta be strapped down and your head put in one of those things and bright lights white walls blah blah. Arms bound with thick leaden cloth. Spread like an angel. Keiya is compliant. She's always been a patient like that, so good so good, with the nurses and caregivers cooing at her like an obedient pet. 
The doctor motions. Keiya spreads her arms wide. 
I, too, am an unclaimed colony.

(Meda Kahn's "Difference of Opinion" has got to be some of the best fiction I've read about an autistic character. Part of the reason for "best" is probably "realistic." Not just with the autistic, but also what happens. How Keiya is a thing to be controlled, a thing to be made submissive, a thing to be made compliant, a thing that has to be fixed, to have an adjustment, if it ever lays claim to self.)




It's obviously not harm if it's done to an autistic. Autistics aren't people. Doctors can't harm autistics; everything is for their good society's good their parents' good everyone's good, good, good, good.

Autistics are things objects subjects problems burdens threats fantasies fictions creatures animals things things things things things not-people things things things things things not-people things things things things things.




But if we have no voices why not cut out the vocal cords because we have nothing to say we've never had anything to say we'll never have anything to say and even if on the off-chance we say something it means nothing nothing nothing so no problem, whoop-dee-doo, cut out them vocal chords and yay, problem solved for those Good Patient Saintly Normal People putting up with the burden of disabled existence.

Silence is their reward.




You can reach the surgeon at dailey@surgery.wisc.edu. Be nice. After all, he's a Person, capital-p, and we're just manipulable, pliant things.

I'd say, fuck all of the people involved, but my voice isn't a real voice can be silenced all the damn time doesn't have to be listened to doesn't have to exist doesn't exist doesn't exist doesn't exist doesn't

24 September 2013

Psychopathy: Racism and Ableism from the Medical-Industrial Complex

Trigger warning/Content: Disability-related slurs and other ableist language, mention of rape, racism, and ableism.

Edit: In the original post, I neglected to ntion the connections between Antisocial Prsonality Disorder and Cnduct Disorder and Oppositional Defiant Dsorder, nd structural racism, sxism, and ableism. typos b/c eited from pphone.

Psychopathy: Racism and Ableism from the Medical-Industrial Complex

When we commit to examining our language and our ideas and deconstructing the ableism we find in them, we must make a full commitment, no partial or half-hearted commitments allowed. When we stop using "autistic" and "retarded" as insults, when we realize the urgent need to stop scapegoating mass murder and rape on "mental illness" and "emotional instability," when we learn to stop referring to our political opponents as "blind," "deaf," or "crippled" in their ideologies, we must also critically re-examine our use of the psychopathy label.

This constructed term of art does not in fact refer to an accepted diagnostic label in psychiatry or psychology. In the recently-replaced DSM-IV (the American Psychiatric Association's Diagnostic and Statistical Manual of Mental Disorders), the closest label was "Antisocial Personality Disorder," a diagnosis that still exists in the current DSM-5. The DSM-5 also contains the newly created diagnosis of Conduct Disorder. The diagnostic criteria for Antisocial Personality Disorder and Conduct Disorder come perhaps the closest to the lay definition for psychopathy that is usually intended when the term is invoked.

The lay definition for psychopathy typically goes like this:
Someone who has little or no empathy for other people and no real control over their behavior.

Psychopathy is usually invoked when referring to either

  1. violent people, such as murderers, serial killers, school shooters, terrorists, or rapists, either by the mass media or by legal professionals, including prosecuting and defense attorneys, judges, sentencing advocates, probation and parole officers, and corrections officers and prison guards
  2. other disabled people, such as autistics, people with mental health or psychiatric disabilities, or learning disabilities (though usually when a person in this group has been accused of or formally charged with a crime)
  3. members of oppressive classes, such as wealthy people, cisgender men, or abled people, and especially when the member of the oppressive class is in a position of political power in addition to apolitical structural power

Yet, as noted before, psychopathy is not even a medical or psychiatric diagnosis. It doesn't exist in the DSM-IV nor does it exist in the DSM-5, and as much as I hate lending any further credence to the medical-industrial complex's state-sanctioned and socially-approved authority, this is important to recognize. Even the medical-industrial complex does not officially recognize psychopathy as a diagnosis. 

On the other hand, Antisocial Personality Disorder is recognized as a psychiatric diagnosis by the medical establishment. And who are the people typically diagnosed with Antisocial Personality Disorder? They are overwhelmingly poor students of color who frequently have other disabilities. Antisocial Personality Disorder, the diagnostic category that comes closest to approximating the lay definition of "psychopathy," is a tool for criminalizing poverty, blackness and brownness, and disability. It is the diagnostic label to legitimize non-compliance as a mental health problem.

Refusal to take psychiatric medications? Non-compliant. Doing poorly in math class? Non-compliant. Stimming in public? Non-compliant.

If you are non-compliant, you are anti-social. You are mentally ill. You have Antisocial Personality Disorder. You are a psychopath.

The language of pathology, of mental illness, of disease, of disability, has long been used to reinforce existing structural oppressions like racism, classism, sexism, heterosexism, binarism, cissexism, and ableism. I spoke at UC Berkeley this past Friday on the need to recognize and move beyond ableist metaphor. Ableist metaphor is all-pervasive in public discourse, in academia, in grassroots organizing, in progressive and radical movements as well as in conservative, neoliberal, and nationalist movements. Ableist metaphor draws on the language of disability to characterize, to denigrate, to attack, to rhetoricize, to politicize -- and it does so based on the presumption that deviation from typical thought, movement, emotional processing, communication, bodily/mental functioning, learning, remembering, sensing is evidence of defect, deficiency, disorder, and ultimately, moral failure. And if this is so, then it is certainly justifiable to refer to one's political opponents as blind or deaf to progressive ideas, or to refer to structures like capitalism or anarchy as social diseases, or to refer to violence visited either by individuals or oppressive systems as evidence of psychopathy.

To use psychopathy as the lens through which one views systemic or individual violence -- the violence of capitalism or patriarchy, for example, or the violence of a single serial killer or rapist -- is to reinforce the structural power of the medical-industrial complex, and to do so at the expense of disabled people, poor people, and people of color who have been victimized by the labels of non-compliant, anti-social, and psychopathic.

To defend the use of this term as medically accurate is to imply that you have knowledge that an individual has been medically assessed as and diagnosed with Antisocial Personality Disorder or Conduct Disorder, which in itself, cedes control and power to the psychiatric establishment and the medical-industrial complex. It presumes personal medical knowledge, it reinforces the creative fictions of these diagnostic labels, and it enables the systems of violence that use the language of disability to pathologize and ultimately, to dehumanize.

Be precise in your language, and say that oppressive structures are violent and manipulative. Say that those who abuse their structural positions of power act with reckless disregard for other human beings. Say that they are callous and unabashedly wielding the power that comes with their privilege.

But don't call them psychopaths.

I've experienced enough ableism in my life to last me several lifetimes. I don't need fellow radicals feeding into ableism.

16 September 2013

People's Coverage of Issy Stapleton's Story

Trigger warning: Discussion of violence against disabled people, murder of disabled people, mention of rape, ableism, and ableist rhetoric about violence. 

Note: I noticed it's actually Issy (with a y). I wrote Issi (with an i). I apologize for my inability to spell.


This is from a letter that I wrote to an editor of People magazine who is also a Georgetown alumn:

I am currently writing regarding People's coverage of the Issy Stapleton case. Issy's mother is currently facing charges of attempted murder, and is being held without bail in the case while Issy is hospitalized with injuries sustained during the attempted murder.

The magazine currently on news stands across the country contains a blurb on the cover that reads, "Autism, Violence & Despair: A Mother's Breaking Point." It breaks my heart and those of so many people in the autistic and disabled communities to continually see such rhetoric in the news, in popular media, and in public discourse.

It is incredibly common for journalists and policymakers alike to assert directly or imply through their reporting and language that when parents kill or attempt to kill their disabled children, it is because the child was a burden on the family, because the child didn't receive services -- any reason other than that the parent decided to harm their child. 

The disparity is very striking when you read coverage of killings and attempted killings of non-disabled children by their parents. Right or wrong, headlines decry such parents as monsters and their actions as evil. Yet when the victim is disabled, as in Issi's case, we are urged to be sympathetic to the aggressor rather than to the victim. The media so often plays directly into this attitude by reporting on all of the reasons that the parents were supposedly overwhelmed and stressed and therefore justified in harming their children.

These cases happen all the time. They are not novel or isolated. They are connected by a powerful and pervasive set of ideas that form the public attitude toward disability -- that disabled people are burdens on society and their families, that disability means less quality of life and less ability to be happy, that it is better to be dead than disabled, that when disabled people are murdered, it is out of mercy and love, and it is our lives that are tragic and not our murders.

These stories should be talked about. We don't want our victims to be forgotten. But I am continually appalled and profoundly saddened to see that the pattern of reporting about these cases remains the same -- always offering justifications and excuses for murder while suggesting, horrifyingly, that if I object to this type of coverage, I am somehow lacking in empathy. I think it is not unreasonable to believe that victims of violence deserve empathy, but the kind of rhetoric exemplified on the cover of People right now only serves to constantly reinforce that I and people like me are not in fact worthy of the same consideration as non-disabled victims of murder and other types of violence. Instead, it is the perpetrators who should receive sympathy. 

Only this week, yet another case following the same pattern has hit the news. Two children, Jaelen and Faith Edge, were found dead after their mother killed both of them and made an apparent attempt at suicide. One of the children was autistic, and much of the reporting around this case too has fallen into the same old pattern of blaming autism and the supposed burden of living with an autistic child as the cause behind the violence.

I cannot go more than a few weeks without hearing of another case in which a disabled person -- child, youth, or adult -- somewhere in the world has been murdered, raped, or assaulted because of the attitude that disabled means less than. The media has a particular power to shape and influence rhetoric, and therefore ideas and attitudes. With this power comes great responsibility. I urge you to do everything that you can to combat this insidious and deadly trend in popular news reporting.

We deserve better. We deserve nothing less.

29 August 2013

How "Differently Abled" Marginalizes Disabled People

Some people, including people who would conventionally be categorized as disabled, use phrases like "differently abled" to refer to disabled people. This phrase is used because it supposedly humanizes disabled people by focusing on our abilities rather than on our impairments. Those who prefer the phrase "differently abled" often see the terms "disabled" or "disability" as potentially hurtful or offensive. "Dis" means "not," so the argument goes, so calling someone "disabled" must mean that a person is "unable to do anything," "incapable of ever doing anything functional or useful or desirable either by others or by themselves," and therefore, it is wrong to call people disabled.

Speaking from a purely objective standpoint, we as humans are all differently abled from one another. Some people are better at math than other people. Some people are better at public speaking than other people. Some people are better at cooking or even remembering to cook than other people. Some people walk and some do not, and of those people who do walk, not everyone walks in the same way. When referring to groups of people, there is nothing inaccurate with saying that within the group, each person is differently abled. This is true regardless of how many disabled people are in the group or if there are no disabled people in the group.

The problem arises when the term "differently abled" is used to refer to an individual disabled person.

Firstly, calling someone "differently abled" is euphemistic. It is borderline cutesy and it diminishes the actual experiences of disabled people. It suggests that the term disability should be uncomfortable and therefore should be avoided. What this does is further increase stigma against disabled people by discouraging discussion about disability and what it means to be disabled.

Secondly, using the term "differently abled" to refer to disabled people actually reinforces the idea that there is one normal way to be human -- that there is one normal way to move, one normal way to communicate, one normal way to sense, one normal way to feel, one normal way to learn, and one normal way to think. It does not perform its intended purpose of suggesting that all people are different and that this is okay. It suggests that only disabled people, who must now be called "differently abled" instead, are deviant or defective from this normal human model, and it suggests that there is in fact a correct or right way to be "able." It supports the false idea of the normal body/mind, which is what "differently abled" is supposed to undermine, and thus it fails in its supposed purpose.

Thirdly, the phrase "differently abled" ignores the reality that disability is the result of a complicated interaction between individual people's bodies/minds and social, cultural, and political structures that actively work to disable people with atypical bodies/minds. This happens because "differently abled" suggests that disability is one person's individual problem while also denying the impact of systems that privilege people with typical bodies/minds while marginalizing people with atypical bodies/minds.

When I say that I am "disabled," I am not putting myself down, insulting myself, suggesting that something is wrong with me, or making a negative statement about myself. I am staking a claim in an identity that is important to who I am as a person. I am recognizing that my mind/body function atypically, and that because of this, I am constantly forced by mainstream social/cultural attitudes and the laws and policies that enforce them to choose between being othered (and then discriminated against or outright harmed) or accepting the idea that I must hide who I am by passing as an abled person.

By calling myself disabled, I am rejecting the idea that it is wrong to have a mind/body like mine.

When I say that I am "disabled," I am not reducing myself to my disability, just as I am not reducing myself to my gender or my race when I say that I am genderqueer or that I am Asian. Being disabled is one part, albeit an important part, of my multifaceted identity. Each of these parts overlaps with each other, blurs into each other, and intersects with each other; they are not separated or disparate. It is important for me to define who I am, and being disabled is an important part of how I define myself.

I do not believe in referring to disabled people as "differently abled" because this language only serves to reinforce oppression of disabled people by systems that marginalize atypical bodies/minds.


Photo: I (Lydia) am standing in front of several people walking down a stone path, holding a large white poster with the colored block letters "Autistic & Proud" in multi-colored rainbow handwritten marker. I'm a young east asian person with short hair wearing glasses. 

26 August 2013

How to be an Ally for People with PTSD

Trigger Warning: Discussion of PTSD, abuse, violence, triggers, ableism, references to rape and the r-word


I've posted this on behalf of an awesome friend of mine at their request. Ideas derive from direct and indirect input from various survivors and folks with PTSD. (For the record, it's the same awesome friend who gave permission to share "A Guide to Sighted Allyhood" and "How to be an Ally to Sick People.")

How to be an Ally for People with PTSD

This is long, and deep. I recommend coming to this when you have a chance to really soak it in and reflect. This piece is also centered more on C-PTSD from ongoing trauma. I welcome perspectives from people with acute PTSD or one-time traumatic experiences.


All of us experience anxiety in some situations. Whether it's having to present in front of a huge audience, perform in front of a panel of judges, undergo surgery, or whatever, we all have moments in our life where we face (sometimes extreme) anxiety. However, Post-Traumatic Stress Disorder, or PTSD, is what happens when someone's lived trauma (including but not limited to: combat exposure, natural disasters, abuse, rape, violence, medical treatments, torture, a near-death experience or other life-threatening event) leads to a chronic level of high anxiety, hyper-vigilance, being in a constant survival mode, and re-experiencing the traumatic event or emotions surrounding it (often called "triggers" and "flashbacks").

Complex PTSD or C-PTSD is frequent in people who have survived ongoing trauma where they could not escape, especially during childhood, such as childhood sexual abuse survivors, survivors of abusive cult rituals, or ongoing painful medical treatments. It includes a sense of broken trust, a loss of self, dissociation, and attachment issues. Many people with PTSD also have other anxiety disorders, depression, and chronic illnesses, because trauma tends to throw off the entire mind-body system. Since many people do not disclose having PTSD, and many people living with PTSD don't have an official diagnosis, you can't always rely on people telling you they have PTSD. Some ways to tell if someone MIGHT have PTSD is if they are often easily startled, jumpy, or on edge. If reading this seems to describe someone you know, it may be good to give them the benefit of the doubt and follow this advice, even if they don't have PTSD/ don't know if they have PTSD.

First & Foremost

PTSD is not a choice.

It is not a matter of will.

It is not a matter of being weak-minded.

PTSD is what happens when you've had to be strong in a time of intense suffering.

PTSD can happen to anyone who has lived through trauma. Life-threatening or soul-crushing trauma. Not small traumas where you fall, get up, and return to your sense of safety--Big Trauma, the kind of Trauma where you fall, and when you try to get up, there is no ground beneath you to even sit on. The kind of Trauma that shatters your entire perception of the world and the people in it.

Some research shows a genetic disposition, anatomical and physiological changes in the brain and brain chemistry, and points to other predicting factors that a trauma survivor will develop PTSD. If you are a Trauma survivor but don't have PTSD, consider other factors. You may have had a support system whereas another survivor didn't. You might have lucked out genetically. The point is, some people get PTSD and some don't. It's a common (but not universal) human response. It's not about seeking attention, being a drama queen, being hypersensitive, being stuck in the past. Something awful, or something in addition to what you've already survived could happen to you tonight and you could develop PTSD as a result.

First I will outline some practical tips, and then I will launch into explanations that give background context to why these tips are useful. It might be helpful to come back to these tips to understand them in their full context.


Trigger warnings

You can include a trigger warning for topics that are likely to cause distress. This is useful on Facebook, Tumblr, in a book or e-book, in an article, or any other text format. Here's what it looks like:

Trigger warning: rape culture
[start talking about rape culture here]

The spacing and punctuation is intentional and is meant to off-set the triggering content from the warning. It gives survivors a chance to decide whether they want to face distressing content. If the content of a post seems to be borderline between potentially distressing and neutral, you can use "Content note" instead of "Trigger warning" so that you don't have to judge the level of potential distress. For example:

Content note: food and dieting

In in-person events, you can preface any stories or comments by saying "this might be triggering for some people" or "I plan on discussing torture at the Judge Rotenberg Center. If anyone wants to step out now feel free."

A specification of detail can be helpful too. For example:

Trigger warning: brief mention of rape
Trigger warning: discussion of rape culture
Trigger warning: detailed account of rape

Are all the same content, but to varying degrees.

Touch & Personal Space

Always ask for consent before touching someone or getting in their personal space. Establish which parts of someone's body they are okay to have touched, and what kind of touch is okay, and what amount of personal distance is okay. Ask every time. For example:

"Do you want a hug?"
"Is it okay if I lay down next to you?"
"May I touch your hand?"
"Can I play with your hair?"

If the person says no, or is very hesitant or unconvincing with their "yes", let it go.

Needless to say, all of this translates to the bedroom. In sexual intimacy, it is important to be VERY explicit about consent. Consent should be established for every new kind of sexual activity every time. This is especially crucial for sexual abuse survivors.

In long-lasting relationships you can establish norms.

Discussing Trauma

Leave it up to the survivor to reveal their story, how much, and in what way. For example, if you are sitting at a table with friends and the topic of Hurricane Katrina or Applied Behavioral Analysis (ABA) Therapy comes up, don't say "Oh yeah, Dave, didn't you go through ABA?" or "Oh yeah my friend here is a Katrina survivor." Respect a survivor's choice to tell their story on their own terms.

If someone asks for a topic change, respect that request. No questions.

As an Ally if you suspect someone is triggered, you can use these moments to check in in a discreet way. For example you can use a non-verbal cue or send a text message. If they indicate they are not okay, you can try to change the subject naturally: "Did anyone see that movie that just came out?" Making it into a big deal--"Let's not talk about Katrina; some people at this table have been through it"--can be embarrassing and awkward for the survivor. Try to keep it subtle.

Sometimes a survivor is triggered but wants to face it in the moment and use coping skills. Respect that choice too.


Triggers & Flashbacks

You might have noticed a trigger warning at the top of this article. Triggers are sights, sounds, smells, feelings, words, ideas, thoughts, and situations that remind someone strongly of their trauma. Triggers are named so because they often trigger flashbacks, which is an intense re-experiencing of trauma or feelings around it. A flashback can range in intensity. A person having a flashback can experience anything from a tinge of fear to being fully convinced they are back in the traumatic situation. So, for example, reading the word "rape" in an online article might remind a rape survivor of when they were raped. The smell of beer might trigger flashbacks for a survivor if their attacker had beer breath during the attack. A loud sound or vibration might remind a combat or earthquake survivor of their trauma. Being belittled or dismissed in a conversation might trigger a survivor whose abusers belittled and dismissed them for years.

If someone's level of anger or fear seems disproportionate to the situation at hand, there is a good chance they are being triggered. As an Ally, you can remind yourself that this person is not only processing their present feelings, but also past feelings that they were never given the chance to acknowledge. When we are surviving trauma, we do not have the safe and nurturing environment to confront our feelings. Therefore, a survivor may have years of buried anger, fear, shame, and other intense emotions. Present-day situations may bring up these emotions. For example, if someone calls your friend a retard and your friend reacts by flying on the handle, it may be because they were called a retard for years growing up by the people who abused and hurt them.

If you suspect someone is triggered, telling them "oh you're just triggered" will not necessarily be received well. Sometimes when people trigger, they don't realize they are triggered. Some people recognize they are in the moment; some recognize it in retrospect; some never do. Each survivor is in a different place of healing and self-awareness.

Meet the person where they are in terms of their healing. If they acknowledge being triggered, you can too. If they deny it, recognize that they have not gotten to the point in their own healing yet to recognize it. It's easy to recognize from the outside looking in, but as the survivor, it requires stepping outside oneself, which is a pretty advanced stage in the healing process. Respect where they are at and do not place a value judgement on their healing process.

As an Ally you can validate this person's feelings. Recognize that it is the part of themselves that was hurt and traumatized speaking. Realize that it is about more than just Here and Now. It's not just about this small incident that happened--it's about much more. Recognize that even displaced anger can still be valid anger. Comfort the hurt part of that person. Do not belittle the person, argue technicalities, or try to push along their healing process. They will heal on their own timeframe, on their own terms. Support them at their pace, on their terms.

Note: This does not mean allowing or excusing abusive behavior. If a triggered person is being abusive, you are allowed to hold them accountable for their behavior. You should take measures to establish your own emotional boundaries and seek safety from abuse. That said, if you acknowledge the survivor inside them and comfort that survivor, oftentimes that dismantles the abusive behavior. It is their Inner Survivor begging to be heard and once heard, the need for self-defense often subsides.

Boundaries & Consent

When someone is in distress, our immediate reaction is to give that person a hug, or some kind of physical affection. So a lot of non-PTSD folks may be inclined to be physically affectionate when someone is triggered or having a flashback.

Establish consent before carrying out any sort of physical or emotional intimacy.

Many Survivors have had their personal boundaries, both physical and emotional, violated. Therefore, it is common for someone having a flashback or being triggered to NOT want physical contact.

It is also a common reaction for people with PTSD either to have non-existent boundaries or to set down concrete-wall boundaries. Many people with PTSD are still learning how to establish healthy boundaries and may set boundaries at both extremes before the pendulum swings towards the center.

Physical Boundaries--it is really important to ask a survivor if they want a hug or want to be touched. If they say "no", respect that request.

How much, where and the kind of touch can make a difference. Some people are triggered by forceful touch but not light touch, some people are just the reverse. Some people can handle touch in a quiet area, but in a busy or noisy area may not want to be touched. The presence of other triggers in the environment may affect someone's level of touch-aversion. It's also a good idea to be more explicit about respecting personal space in general. For example it might be considered nice but not necessary to excuse yourself if you have to reach over someone, but these small courtesies can have a whole other depth of meaning for people with PTSD.

If the person in question is in such distress they cannot express themselves clearly, check for signs. Does their body tense up when you touch them? Do they try to break physical contact after you've established it? Do they back up or look threatened when you approach them? These are signs they don't want to be touched.

Do they relax and seem calmer when you touch them? Do they reach out to initiate physical contact? Do they look comforted when you reach to hug them? These are signs they want to be touched.

Emotional boundaries--when a person is having a flashback, it is important to ask the person if they want to talk about it first. If they want to be left alone, respect that space. If they want to talk to someone else that is not you, respect that too. Many survivors have had their trust in people or situations severely tampered with and may be working on building up trust again. It's important not to force trust. If that person needs to turn to another person they trust more right now, or if that person feels they cannot trust anyone right now, give them that space. Do not take it personally. If a survivor does not trust you enough to talk to you about it, it has nothing to do with how trustworthy you are and has everything to do with them learning to build up trust again. As they heal, they will start to trust more.

Situational boundaries--it is a good idea to give survivors flexibility with getting out of a situation. For example, if you host a party and it turns out you've invited a survivor's perpetrator, find a way to either get rid of the perpetrator or at least minimize their interaction as much as possible. If a party has drugs and alcohol and your friend is triggered by drugs and alcohol, offer to leave with the survivor. If you want to go see a movie, and you know your friend is a veteran, mention if the movie contains lots of combat scenes. Give them a heads up and offer an out. If they express a strong aversion to something, don't pressure them into doing it. Respect their aversion and move onto something else.

It can be painful to be on the outside of a PTSD survivor who is going back and forth between being overly trusting and overly distrusting, setting no boundaries and then concrete-wall boundaries. This may bring up your own emotional history. In this situation, as an Ally, it is extremely important to take care of yourself too. Reach out to people OUTSIDE your relationship with the survivor to talk to. Seek your own support system as well. Respect your own boundaries and limits as well.

"So, what happened?"

Do not ask a survivor about their trauma. They will come to you about it if and when they are ready. If they never do, don't take it personally. Some survivors find it easier to express their trauma through other channels such as poetry, art, music, dance, etc. Confiding in loved ones is only one channel.

When a survivor comes to you about their trauma, this is an honor and a privilege. It means they trust you enough to be vulnerable. This is not the time to judge whether their trauma really happened, if it was really that bad, if they are exaggerating. This is not the time to fact-check or cross-examine them. Trauma can be hard to remember. Memories are can be confusing, fragmented, and hard to fully understand. Emotion distorts memory and the human mind is not perfect. A survivor might also be mixing up memories from two separate traumatic events or may be missing some pieces of the puzzle. Childhood memories may also be through the lens of a child's mind and therefore may make it hard not only for you, but for the survivor themselves to understand through their adult mind. Often memories are just as confusing for the survivor as they are for you.

This is not the time for unsolicited advice. Do not tell them "well you're the one who enlisted" or "your shirt was low-cut and you were drunk" or whatever other "explanation" you have. The trauma is not the survivor's fault. Do not victim-blame. It is either the result of bad circumstances (such as in the case of natural disaster) or the the fault of the perpetrator (the person who hurt them).

This is not the time to tell them about how you or someone you know lived through something worse. This is not the time to remind them of the starving children. The pain and suffering of other people does not lessen a survivor's pain. Playing Trauma Olympics serves no one and is an undercut way to dismiss or brush off the survivor's trauma.

Instead, take the survivor's story at face value. Trust the process. In listening to their story without judgment and with compassion, you help them in their healing process. You are not obligated to offer some golden nugget of wisdom. Just your presence, a lending ear, eye, or hand can work wonders. It is a privilege to be in this role and have the opportunity to show allyship in this way.

Keep in mind that PTSD is related to the person's own perception of what happened and their survival response during the trauma. In other words, even if, for example, a doctor told a cancer survivor they would die from the cancer, and they ended up surviving, they still need to process the emotions of having believed they were going to die.

This also means that two people could have survived the same traumatic event (maybe even together) but still have responded differently. Different survivors will be affected in different ways and to different degrees. That is because trauma does not exist in isolation--the person's life before the event, how they were able to respond to the event, and their neurology all factor into how their PTSD manifests now. Everyone is different. No two survivors are the same.

This is a live document and open to change. If you have PTSD or are a survivor, feel free to comment! I know I didn't cover everything there is to say on this topic, so please, please feel free to add whatever comes to mind.

22 August 2013

How to be an Ally to Sick People

Trigger warning: Quoted examples of ableist, patronizing, condescending, or hurtful speech directed toward sick and disabled people.


An awesome friend of mine shared this earlier today and gave permission to repost here so many more people could see this and contribute. Ideas derive from direct and indirect input from various sick and disabled folks. (For the record, it's the same awesome friend who gave permission to share "A Guide to Sighted Allyhood.")


How to be an Ally to Sick People

By "Sick" here, I am talking about people who deal with chronic illnesses like fibromyalgia, lupus, arthritis, multiple chemical sensitivity syndrome, chronic fatigue syndrome, and other physical conditions that are not always immediately noticeable. Some people with more apparent disabilities (like wheelchair users) may also be dealing with similar symptoms, as part of their disability, that are less apparent. (For example people with muscular atrophy, spinal cord injury, etc. might also be dealing with fatigue, chronic pain, etc.)

This is just my opinion, one person's perspective, though I have run it by some other people too. Please don't take this as the gospel though. I welcome additions from anyone who is Sick or Disabled in an often unapparent way.

In each section, I start with the DON'Ts to help highlight the DOs.

1. Being the Judge. The Judge says: "You were able to do that yesterday." "But you went on a hike with me once." "You don't look like you're in pain though."

Do not make yourself the judge of a person's level of pain, fatigue, etc. Everyone has good days, bad days, in-between days, and you don't know what price they pay to do the things they do. Maybe they went on that hike and spent a week in bed after because they really wanted to enjoy nature and decided it was worth it. This person's care team monitors their health much more closely than you can as a bystander. This person's (chosen) family has seen how their illness affects them much more intimately than you have. Leave it to their support team, and realize that a smile and vibrant look for 2 hours at a party doesn't mean that person isn't sighing or in tears when they go home. If you are not very close to this person, there might be a whole other side you never see. They might not feel like being on public display, and making themselves vulnerable.

An Ally says: "I'm sorry you're hurting so much more today." "I feel honored that you accepted the health risk just to spend time with me in nature." "Wow, you have impressive coping skills for hiding pain."

An Ally recognizes that they do not have the same experience as a Sick person--they do not understand the natural ups and downs and fluctuations. An Ally understands that often when a Sick person comes off as more abled than they are, it's out of a conscious choice to pass, or in other words, juggle perception and reality. An Ally recognizes someone's skills in passing as abled for survival, while only being a source of support when the Sick person lets the pain show, can't hide the fatigue anymore, and respects the person when they choose to be vulnerable and emotional.

2. Being the Doctor. The Doctor says: "You should eat less sweets." "You should stop drinking." "Have you tried acupuncture? Exercise? Raw food diet?" Etc.

This person has dealt with their symptoms far longer than you have. They know what options are best for their body and what options aren't. Their health is their personal business. They will ask you for advice if they want it. They also know when they have to make choices for their emotional health. Maybe some ice cream helps them deal with the shitty reality of being in sick. Maybe a beer helps reduce their pain, or makes it easier to deal with symptoms mentally. Respect that they are coping with the situation in the best way they know how, now, and with the support that they do/don't have. Try to be a source of support. Keep in mind that whatever you have to suggest that they didn't ask for, they have probably already heard it nine million times before.

An Ally says: "I'm so glad you're engaging in self-care." "You deserve a break from the pain/fatigue/nausea/etc." "Would you like some suggestions? [in response to a "yes"] This is what has worked for me/someone I know."

An Ally recognizes each body and mind is different. An Ally recognizes the mental, spiritual, and emotional needs that also need to be factored into living with chronic illness. An Ally aids in finding ways a Sick person can get some kind of relief (even if temporary or partial) from their symptoms. An Ally recognizes that medications, therapies, and remedies that may have worked for them or someone they know may not necessarily work for everyone. An Ally gives advice only when asked.

3. Being the Parent. "Are you sure you can take that many classes?" "Are you sure you can do that job?" "Should you really be staying out this late?"

This person can make their own choices and figure out their own plans. They have figured out ways to do what they wanted in the past, and can figure it out for the future too. They already know better than you the price they will pay for their choices now. Don't take it upon yourself to parent them if that is not something they have indicated they want. If they ask, that's another story, but don't impose that role onto yourself (and the role of the helpless child onto them). No matter how well-intentioned you are, when the help is not requested, it's patronizing.

An Ally says: "I support you in pursuing your dreams." "I know you can do it." "You can crash at my place if you need to."

An Ally realizes that abled people do not always make the wisest choice for their bodies because sometimes they want to have social lives or have fun. Sick people are no different. An Ally recognizes that a Sick person has the same right to fun and community. An Ally is willing to take steps to help the Sick person live an enriching life and trusts Sick People will go through their own process of figuring out how much or how little they can take on career- and hobby-wise.

4. Being the Martyr. "I always have to give you rides everywhere!" "Why do I always have to do the house chores?" "What would you do without me?"

Caregiving is great when it is just that--giving. Giving with conditions in mind, with guilt-tripping, with threats of withholding the support if the Sick person doesn't do a) b) c) is not true caregiving. At best it's not nice, and at worst it's abusive. It is wielding privilege over the other person and creating an unbalanced power dynamic.

An Ally says: "I'll give you a ride"--without making themselves into the Savior for doing so. An Ally cherishes and values the ways in which a Sick person can contribute to a relationship, even if those ways are less tangible. An Ally recognizes that chores and practical every day living stuff is only one way of giving in a relationship and that a Sick person may have to find other ways to give back (such as through art, emotional support, expressing appreciation). An Ally recognizes that there is a power dynamic and that privilege needs to be carried with care and conscience. An Ally also respects their own boundaries and limits with giving so that resentment does not build up in the relationship.

5. Being the Complainer. The Complainer says: "It's exhausting hanging out with you." "You're always canceling plans last-minute." "I can't do this."

Being in a caregiver role, or even just being a friend or acquaintance of a Sick person can be a lot to handle. Sometimes it seems like tough stuff and maybe more than you can handle. However remember that while this is hard for you, it's even harder for the Sick person. Imagine what it's like to be in their place.

An Ally says: "I love hanging out with XYZ but it can be exhausting"--to someone else they trust, not the Sick person. An Ally lets other abled people who are able to be emotionally supportive know: "XYZ may or may not show up to the party tonight"--without judgment. An Ally says "I can't do this alone"--to a person who is dealing with less hardship than themselves and seeks support OUTSIDE the relationship with the Sick person. An Ally reaches out to other people to vent and debrief about the hardship of being friends with a Sick person or in a caregiving role.

6. Being the Worshipper. The Worshipper says: "You are such an inspiration!" "Wow, if I were you, I would just kill myself." "You must have a special relationship with God/[insert spiritual figure here]."

A Sick Person does not exist to make you feel warm and fuzzy inside. Your sense of gratitude for your own health and circumstance should not be hinged upon their suffering. There is no correlation between being Sick and any sort of spiritual or religious status. Sick people, liked abled people, run the gamut in terms of religious and spiritual beliefs (or lack thereof). It is important not to view a Sick person's existence in terms of your own, or to impose shallow stereotypes onto Sick people.

An Ally says: "Sometimes you stay strong, and sometimes you crumble, because you're human." An Ally says: "I respect your feelings about life and death."

An Ally takes a Sick person's words about faith/spirituality/lack thereof at face value. An Ally gives a Sick person the space to be an individual, and realizes we all individuals yet all interconnected. A Sick person might teach you something, but you might teach them something. And yet, even if you have strong impacts on each other and learn from each other, your life purpose is not reduced to their education. You each live for your own sake first.

7. Being the Over-Empathizer. The Over-Empathizer says: "Oh I know what you feel like--I hate when I get the 24-hour flu." "Oh yeah, I'm tired after a long day too!" "I pulled a back muscle once."

Yes, we have all suffered to some extent. We've all dealt with some degree of sickness or injury. But it is important to remember that being temporarily sick, or in temporary pain, is not the same time as chronic illness or chronic pain. The intent to be compassionate is recognized, but it's important not to diminish a Sick person's experience. It's important to recognize abled privilege. If on the vast majority of days you aren't tired, aren't in pain, etc. then you do not understand being Sick.

An Ally says: "I can't imagine what it is like to feel nauseous every day." "I have no idea what it feels like to be tired by 11 AM." "You're right, I don't know what it's like."

An Ally recognizes their abled privilege. An Ally is compassionate but recognizes they do not fully understand. An Ally uses their experiences and draws parallels to try to get an idea, but recognizes that temporary pain/injury/discomfort is only a small taste of what Sick people go through. An Ally recognizes that pain/symptoms/sickness is a Sick person's baseline, their every day.

8. The Victim-Blamer. The Victim-Blamer says: "Why don't you stop focusing on it so much?" "Maybe you were evil in a past life and are dealing with this to fulfill karma." "Maybe if you listened to my advice you'd feel better."

Different Sick people cope in different ways. Some Sick people find that thinking and talking about it helps. Some Sick people find that it doesn't. Sometimes shitty things happen to perfectly good people, and this is no exception. The underlying reason to victim-blaming is often some attempt at denying privilege or absolving guilt. Realize that the Sick person did not choose illness and you did not choose abledness. It's not their fault they're Sick (even if they made poor health choices at one point, so did a lot of people who never became Sick). And because you didn't choose to be abled, there's nothing to feel guilty about. Feeling guilty helps no one; if you recognize your privilege and feel stuck, think of ways you can use that privilege to practice allyship.

An Ally says: "If you need someone to vent to, I'm here." "I don't need to insert my opinion into every discussion about chronic illness." "It doesn't matter what made you sick, how can I best be supportive now?"

An Ally recognizes that Sick people are human and sometimes get overwhelmed by their situation. An Ally recognizes that at times a Sick person may want to vent among other people who understand first-hand what it's like. An Ally also recognizes that we all make mistakes or poor choices and that is a part of being human. An Ally recognizes for example that one person could text and drive and nothing happens, and the next could text and drive and get permanent brain damage. Even if an illness is connected to a poor choice, it still doesn't mean the Sick person deserves the illness.

Other comments that come from a place of privilege:

"Your outfit looks so tacky." Part of being Sick is that often when it comes to getting dressed, comfort comes first. If the only pants you can bear to have touch your skin today are the blue pineapple shorts, then that's what it's going to be. Note: many Sick/Disabled professionals wear the necessary attire and look forward to ripping it off and putting on PJs the second they get home.

"You can't be an activist sitting at home on your couch. If you really care, you'll come to this protest/ rally/ march." Many Sick/Disabled activists have no other choice. Online activism is just as valid as in-person activism. Activism is about ideas and changing the way we think--it's not about how many hours you spent under the burning sun/ in the cold wind.

"Your apartment is a mess." Doing chores takes energy that many Sick people don't have. It's not the same as laziness. Laziness is "I could do it if I wanted to, but don't feel like it." Being sick is literally being so drained of energy you wouldn't be able to do it even if you wanted to.

Sick folks, feel free to add! This is a live document--a work in progress--I look forward to having other perspectives added. If you need to see this in ASL or another format, let me know. Contributions in other formats are welcome (if you want to talk about it in PM and have me rephrase, or sign your thoughts to me in TASL, I welcome them.)

Added later!

9. Being the Ablesplainer. The Ablesplainer* says: "She was just trying to be nice." "But that's not how I meant it!" "You're too focused on how you feel."

Sick/Disabled people already know how that abled person meant it. We already know that they were just trying to be nice, or kind. Good intentions, good-heart, we get it. We spend our time thinking about "what they meant by that comment" or "their thinking behind that act" all the time. We are forced to think critically about the abled perspective because most people in our life who interact with us interact with us from that perspective.

An Ally says: "That was a dismissive comment to make." "I'm sorry you are frustrated." "That person didn't think about the impact their actions would have on you."

An Ally puts impact before intent. An Ally recognizes that even though someone means well, their words, thoughts, and actions can still have a harmful impact on Sick people. An Ally centers the Sick person's feelings in a discussion about their chronic illness and caregiving. If a Sick person vents about patronizing behavior, an Ally listens to the Sick person and values their feelings. An Ally doesn't make excuses for another abled person's behaviors.

*Ablesplainer (also ablesplanation): the act of an abled person trying to explain Disabled people's experiences to them. It comes from combining the terms abled and 'splaining, constructed parallel to terms like whitesplaining and mansplaining.

10. Being the Newscaster. The Newscaster says: "Oh, they had to get this test done and has that diagnosis and their doctor said this and that." The Newscaster answers all questions about a Sick person's health on the Sick person's behalf without express consent or discernment.

When some is Sick, particularly when they have to go to the hospital or get some kind of treatment, it's natural for people to be concerned. People want to know this Sick person is doing okay. They want to understand what's wrong and offer help in whatever way possible. The Newscaster is usually acting on this intent, but does not realize that they are not respecting the Sick person's boundaries. They also do not realize that they could be causing a lot of drama for the Sick person, particularly if they share sensitive medical information to people who could make harmful judgments based on this information (for example, an employer deciding to lay off an employee after finding out they're likely to be out for awhile.) 

An Ally says: "They had this test done"--after the Sick person has given express permission to share this medical information. An Ally says: "He doesn't want to go into detail, but suffice it to say he is doing better." An Ally asks the Sick person how much to share, and who can know what information.

An Ally respects the Sick person's boundaries. An Ally respects the Sick person's choices in how much to disclose about their illness and to whom. An Ally prioritizes the Sick person's privacy over others' curiosity. An Ally understands the risk in sharing medical information and treats this information with the respect and care it deserves.