03 February 2016

Autistic Representation Crisis in Massachusetts (but dying of not surprise)

Let me tell you a story (and apologize in advance for its somewhat long-windedness, but I promise, there's a point.)

Several years ago, the Massachusetts Legislature created a special commission on autism tasked with going through the entire state's services, programs, supports, and other types of resources related to autism. The point was to figure out what the state was doing right, what the state was doing wrong, and what the state was doing relatively all right but could stand to significantly improve. The commission also designated multiple subcommittees to deal with different subsets of autistic people -- ranging from school age to adults. The commission, and each subcommittee, met about once a month for most of 2011.

There were 44 members of the overall autism commission. 14 were public appointed members, and of them, to the best of my knowledge, only 1 (the ever-present Michael Forbes Wilcox, Jr.) was actually autistic. That means only 2.27% of all of the commissioners were actually autistic.

The autism commission met and so did its subcommittees -- several of us who are actually autistic participated in the subcommittees -- and finally released its final report in 2013. I was one of those autistic people, and I was part of the Adult Services Subcommittee. I distinctly remember a fun (that's sarcasm) experience where I suggested that self-advocacy should be a priority, and had managed to get out exactly one word (i.e. "self-advocacy") before a non-autistic parent began to literally shout me down for being "too high functioning" and "excluding nonverbal people with autism." (Sigh. So much for presuming competence and looking to follow the leads of non-speaking autistic activists like Amy Sequenzia, Naoki Higashida [mostly non-speaking], Mel Baggs, Tito Rajarshi Mukhopadhyay, and Larry Bissonnette who are in some ways the epitome of the original "self-advocacy" ideal...) I also remember spending four hours of my birthday in August 2011 in a subcommittee meeting. Fun times, huh?

Fast forward now to September 2014, more than a year after the final report from the special commission. Governor Deval Patrick signed into law the "autism omnibus bill." That bill recreated the autism commission, but this time, made it a permanent, standing commission instead of a one-time statewide project. The bill was jam packed with all sorts of recommendations from the special commission's final report, including, importantly, a policy change to the giant services gap for autistic people in the state.

Before the bill was signed into law, the Department of Developmental Services had a policy of refusing to provide services to autistic people who had an on-paper IQ of 71 or higher. At the same time, the Department of Mental Health had a policy of refusing to provide services to anyone whose "primary diagnosis" was not a mental health condition -- and because autism is considered a developmental disability instead of a mental health condition, even if an autistic person also identified with a psych disability, they would be ineligible. These parallel exclusionary policies meant that huge swaths of autistic people were unable to receive services -- essentially, anyone autistic with an on-paper IQ of 71 or higher. (This doesn't even begin to touch on the enormous structural problems with the classism, racism, and ableism embedded in the concept of IQ, but there you go.)

Among other things, the state government has been adjusting to the tenure of the new governor, Charlie Baker, who came into office in January 2015, four months after the autism omnibus bill became law. In the fall, the Executive Office of Health & Human Services (EOHHS, because there aren't enough acronyms in the world, apparently) sent out a call for nominations (and self-nominations) for people interested in serving on the new, permanent autism commission. Several autistic people sent in paperwork. I, at least, heard nothing for over a year.

In the fall of 2015, I saw on the EOHHS website that a first meeting was scheduled for the new autism commission. In January 2016, a second meeting was held. About a week later, I was at a disability and health advocacy forum where I ran into the Department of Developmental Services Commissioner Elin Howe, who mentioned to me that most slots were filled on the commission, but there was one slot specifically for an autistic person -- and that that slot had not been filled.

Somehow, despite multiple autistic people sending in paperwork to be considered, not one person had been identified until after the commission had already appointed the vast majority of its members (if not every single member other than the designated autistic person) AND had met twice as a full commission.

Somehow, despite the presence of only one autistic person during the commission's first run as a special commission, the state had not learned and did not think it a priority to ensure more meaningful representation of actually autistic people.

No information (to date) has been posted about the names of the people appointed and sworn in as commissioners.

In contrast, the federally funded Developmental Disabilities Councils require that at least 51% of membership be people with intellectual or developmental disabilities or their family members. (It really should be people who themselves are disabled at 51% and non-disabled family members a separate quota/constituency, but it's better than nothing, and many DD Councils have multiple members with disabilities.) Likewise, the national network of Independent Living Centers (ILC's)/Centers for Independent Living (CIL's) operate under laws that require 51% board of directors representation of disabled people.

No one is saying that every single disabled person under the sun is personally interested in public policy, personally capable at any point in time of participating in formal government processes re: public policy as they are run now, or individually represented by every other disabled person who is participating in public policy. (Every single community, ever, is made up of many disparate people with diverse perspectives and experiences.) But. Disabled people know better than non-disabled people what it is like to be disabled. Disabled people who do activism or advocacy tend to have a keen grasp of issues affecting them and people like them, even if we have an incredibly long way to go in sustained cross-disability work.

The best advocates for people with disabilities are other disabled people.

About a week after my conversation with Commissioner Howe, she informed me that the slot had been filled but did not specify by whom.

Earlier today (first week of February), I went to a health law networking event. (Honestly, one of my primary motivations for going to these things is the food. I love meeting new people and learning about what they do -- it is genuinely fascinating. But food is such a powerful motivator.) The new EOHHS Secretary, Marylou Sudders, was the featured speaker. During the Q&A, I seized the opportunity to ask questions first, and one of those questions was about the makeup of the autism commission (and its near total incompatibility with the principle of "nothing about us without us"). From Secretary Sudders's answer, I learned a few important -- and further infuriating -- facts:

(1) There are 35 total commissioners. That means that autistic people make up only 2.9% of the commission (still not even a full percentage point higher than on the original commission).

(2) As with many topic-focused government councils and commissions, the law specified that members must include representatives from various specific government offices and community organizations. Again as is standard practice, each organization entitled to a representative among the commissioners essentially chose its own representative. That means that every single organization (or all but one, depending on who that last appointee is, since we still don't know) chose a non-autistic person as its representative.

(3) Secretary Sudders (and potentially others) has proposed that someone should introduce legislation that would amend the law creating the autism commission to require at least a few autistic people on the commission. That means that no one thought to include any provision in the original bill specifying at least a certain number of seats for autistic Massachusetts residents (or creating a parallel requirement to the specified organizational representatives that a certain percentage of the total commissioners must be autistic).

This type of routine exclusion of autistic people from public policy is so ordinary that I doubt I'll ever be surprised by it. Back in 2012, a congressional committee on Capitol Hill convened a hearing on autism that originally included no autistic witnesses -- it took concentrated lobbying to force the invitations of two autistic people to the hearing (and both, notably, were white men). It took more than ten years before the notoriously awful organization Autism Speaks finally brought two autistic people onto its board (both are white and hold doctorate degrees) in a token symbol of representation. The federal Interagency Autism Coordinating Committee has had at least one autistic representative for the past several years, and for the most recent few, has had three at any given time (note again, all are white and all but one have been men).

It doesn't matter, though, that exclusion and tokenism are common practice in the public sphere. What matters is that organizations working in Massachusetts in 2016 should know better. What matters is that we need better communication and better decision-making processes and clearer guidelines for those determining which individuals from which constituencies and with which lived experiences will be invited and appointed to high-level policy positions. What matters is that any individual organization's choice to select a non-autistic representative means very little taken on its own, but that the total picture, where every single organization and agency (possibly, again, except for one) selected a non-autistic representative.

Who serves on these organizations boards of directors? How much influence do state agency advisory boards or committees actually have? Who occupies the executive and management roles in these organizations? Which organizations have enough clout to be guaranteed a seat at the table, and which depend entirely on local, grassroots support and operate primarily outside of the insiders' network? Who is recruited into the policy analysis divisions of state agencies? Who is offered internship and other experiential learning opportunities, either as part of conventional higher education or outside that institution?

How is it possible that out of the entire state of Massachusetts, it is acceptable in 2016 to permit only one autistic person to serve on the autism commission, and to wait until after two full commission meetings have convened to appoint that person?

This photo (below) is pretty out of date. A few readers who've known me for a long time might recognize it. It's from a focus group on autism and ethics that I coordinated for the Autistic Self Advocacy Network's New England chapter way back in May 2011. (Yes, I know I look like a child trying to be a business suit-wearing adult in this picture.)

Photo: A group of twelve people, mostly white, but spanning all ages, standing outside around late afternoon, smiling after their event. Dress ranges from totally casual to business suits. Left to right: Andrew Collins, Claudia S., Dusya Lyubovskaya, Ivan Sheth, Ari Ne'eman, Lydia Brown, Sara Willig, Danielle A., Ryan L., Phil Schwarz, Kevin Barrett, and Daniel B. Photo by Nathaniel Wood.

I'm including this photo in the middle of the blog post, because it shows twelve autistic people gathered in Massachusetts, mostly from the ASAN New England (now ASAN Boston) chapter. There were actually closer to thirty-something autistic people at the event, but most skipped out before the photo op happened. (Fine, four of them were technically from out of state, but "out of state" here includes one each from Rhode Island, Connecticut, and New Hampshire, none of which are that far.) Obviously, as we know from the special commission's 2013 report, there are many more autistic people in Massachusetts than in this picture, but it's nevertheless a visual representation of "more than one or two" of us.

We represent over 147,000 autistic people in this state. (Statistic derived from the 1/45 prevalence rate last reported by the CDC, and the 6,646,144 population number.)

Out of over 147,000 autistic people, 35 people have been chosen from across the state to make recommendations and decisions about autism-related public policy in the state government, and only one of those 35 is autistic. (We have to constantly remind ourselves that our voices do not matter and will not be taken seriously except when it becomes politically expedient. To do otherwise, to think or imagine otherwise, is to set ourselves up for constant disappointment. And remember, we must be grateful for any representation at all. Tokens, after all, must take on the burden of speaking for all of us when well-behaved and suffering constant dismissal and attack as "not representative of real autistic people" when even timidly challenging status quo.)

And, business as usual dictates that no one with the power to make any decisions notices our almost total exclusion until after we did. It's just. Business. As. Usual.


#LeaveItIn2015 #LeaveThatShitIn2015 ‪#‎OutrageousButSoSoSoNotSurprising‬

23 January 2016

Creating Change is not exempt from casual ableism

Creating Change is not exempt from casual ableism.

Right now, thousands of queer and trans folks are gathered in Chicago for the annual Creating Change Conference. I'm not there, mostly for financial inaccessibility reasons but there's also no shortage of disability inaccessibility reasons.

 Photo: Me keynoting the Students of Color Conference "From Moments to Movements" in Yakima, Washington, April 2015. There are a lot of attendees visible in the unfortunately grainy photo facing the front podium. Over 800 students gathered for SOCC. This picture was unfortunately the only "conference" picture I have in my collection that doesn't show mostly a collection of white people.

The conference program booklet contains over three pages asking its attendees to show basic respect for disabled attendees -- to not use flash photography, to avoid asking unnecessarily intrusive questions, to refrain from wearing scents/fragrances, to give people extra space and time to communicate, to avoid making assumptions about things like not making eye contact, to not touch or talk to service animals, to hold open inaccessible doors. From the section on resources for disabled attendees directly -- noting where to find large print programs, wheelchairs and scooters, assistive listening devices, or ASL interpreters -- you might assume that they've made a shitton of progress from the usual shitty standard to be expected at most conferences period (but especially conferences not specifically about disability).

The fact that there are several sessions on disability inclusion as well as developing a disability justice analysis in liberation work, not to mention an actual Disability Caucus (that's tonight), certainly makes it seem like we should be able to expect a pretty good degree of disability consciousness and a willingness to enforce the actual expectations around not being an ableist dickbag.

But then this happened -- an attendee with fibromyalgia (not always an apparent disability) had a series of terrible experiences in just the last couple days alone.

In their own words, shared with permission:

(begin quote)
I understand the wonderful side of Creating Change, that it can be empowering and great. But as a disabled person with different needs I have never felt so marginalized by a conference and the people attending. Most of you know I have some issues with my hips and legs so I bought a cane. After several attempts to get into a elevator (because I don't move fast everyone was cutting me in line and rushing past me) I finally got in one and my cane and I were literally pushed out of that elevator by a group of people probably my own age, because "they were in a hurry."  
Yesterday I attended a workshop specifically for disabled folks and the room wasn't accommodating AT ALL. People with mobility devices were separated from people in chairs because of the space and despite several requests the conference wouldn't provide extra chairs or a microphone. People were having to get down on the floor and sit because they weren't able to stand and they wouldn't provide chairs.  
Every experience I have had here has been a slap in the face to differently abled or chronically ill folks. Instead of feeling empowered in my body and queerness I feel like there is no place here for me and that CC doesn't actually care about folks that have different needs. This experience has made me the most self conscious I have ever felt about my body and the things it does and needs. It makes me sad. 
(end quote)

This kind of bullshit demonstrates the casual ableism endemic to all kinds of conference spaces.

It doesn't matter if the conference is focused on disability. Autistic activist Kassiane Sibley has been repeatedly assaulted with life-threatening seizure triggers at multiple disability-specific conferences, but that's been apparently insufficient to warrant changes in policies or enforcement of them. My partner has been subjected to extremely painful audio feedback from microphones during conferences where plenty of people should have known better. I've been at conferences ostensibly for people with intellectual disabilities where the material ranged from totally cognitively inaccessible to outright patronizing and condescending, because "presume competence" is apparently little more than a buzzword. Other friends who use wheelchairs have been literally unable to get into the room at their conferences -- at times unable to even get onto the podium to speak when they were invited, because there wasn't a ramp provided.

This doesn't even begin to touch on the fact that a ridiculous number of disabled activists and advocates are unable to attend the Society for Disability Studies conference (and many others) every year because it's always financially out of reach -- and a disproportionate number of disabled people are no-income or low-income, even those of us with piles of educational privilege.

It doesn't matter how much money the hosting institution has. I've been told by a university with an endowment of over $1 billion that paying for American Sign Language interpretation for an event advertised to the public would be a waste of money.

It doesn't matter how supposedly progressive, forward-thinking, or inclusive the conference is supposed to be. I can't go anywhere without hearing fellow people of color condemn racist police as "suffering from a mental illness" or fellow progressives insist that focusing on mental health is the way to go in addressing violence or fellow feminists argue that people with uteruses need legal protection for the right to choose so they can abort pregnancies with potentially defective or disabled fetuses.

Gentrification and lack of housing also means disabled people who need the few accessible units are totally fucked, especially if they're also low-income, which frankly, we're much more likely to be on average. Blank stares.

The prison-industrial complex depends on ableism as much as on white supremacy, and in fact, creates new disability experiences by traumatizing and physically abusing prisoners. Blank stares.

Dominant narratives about whose bodies are valuable or desirable or worthy of love focus not only on whether you're thin or heterosexual or cisgender or young(er) but also assume that you're able-bodied, sighted, hearing, physically stable, and neurotypical. Blank stares.

Fair pay has to mean not only a $15 minimum wage, an end to the exploitation of prisoners paid at subminimum wage rates, and hour/overtime protections for low-wage workers, but also an end to the subminimum wages under Section 14(c) for disabled workers. Blank stares.

If you don't get that "your issues" are also disability issues, how are we supposed to expect even a modicum of space for us at your conferences?

Soul-crushing schedules jam packed with workshops and breakouts and plenaries and caucuses and special interest groups and socials and receptions with barely any breaks in between mean that most of us have to say no. They mean that we have to choose between attending the People of Color Caucus and the Trans/Gender Non-Conforming Caucus. Or between attending several breakout sessions and the open social hour that evening. Because our bodies, our brains, our mental health just can't take it. Because the spoons dry up partway through the first day. Because there isn't enough time built in to have actually nothing scheduled.

(Scheduling meetings during lunch doesn't count. That means we have to choose between taking the break we need and forcing ourselves to keep "performing" if we want to be able to participate, if that's when the only option for participation is.)

Expensive hotels, far-away cities, few opportunities for scholarships or financial aid (and often limited financial aid to cover only cost of registration but not travel costs), and steep registration fees that mean most of us have to resort to crowd-funding and begging everyone we know for help getting there, if we're even able to fight through the enormous amount of classist shame attached to asking for money. And of course, that assumes we're not already in desperate need of money for our own basic survival in the first place.

Your queer and trans disabled folks have always been here, creating change in how we do things. In how we do intimacy. In how we do sex. In how we do kinship. In how we do organizing. In how we do social. In how we do community building.

But in your spaces, what we do suddenly turns into too much. It's cool to say you're accessible, shows you're hip and aware of the "next latest thing," but actually practicing it? Actually training your volunteers and staff on how to recognize casual ableism and intervene, especially when it comes to how your conference is being run? Actually addressing issues when they arise? Actually responding to people's access needs when they become relevant? No, sorry, it's not convenient.

Don't bother putting the accessibility notice in your program if you're going to ignore it. Don't bother putting the accessibility notice in your program if you're not going to act on it. I don't believe in words and vague promises and commitments. I believe in actions. I believe in what people do (or don't, frankly), and if all it is is window dressing, I'd rather you be honest in the first place and not include it if you're not going to follow through on it.

If you want to be radically inclusive, if you want to be maximally accessible, if you want to be safer, if you want to create multiple modes of participation, then don't just say you're going to do it. Don't just provide the large print programs and a nice request to please not wear scents or use flash, and then step back and wait for the inevitable fuckery, and then insist that it's all okay and you're still accessible anyway. Create accessibility by practicing your stated commitments and being, oh, I don't know, proactive about it. (This "let's only deal with it after we get a complaint" reactive bullshit needs to stop too.) No more excuses. No more, "but we tried our best." No more, "but it's too hard." No more, "but you're too angry."

We're angry because this is a constant occurrence. Literally everywhere, we are reminded that our bodies and brains don't matter and are not valued. But we keep trying, keep pushing to be part of these spaces because we believe in the power of interconnectedness, of intersectionality, of coalition building, of insisting that our communities recognize our existence in all its complexities, of moving from margin to center, of making sure that the next disabled folks after us have a bit less bullshit to put up with. But so far, things aren't changing much more than on the surface. And while that's a little sad, somewhat enraging, and not more than a little disappointing, it's far, far from surprising.

(If conferences on disability consistently fail on accessibility by all definitions of the word, then how the hell are we supposed to expect anyone else to get it right? But of course, the problem is that we should be able to expect better. Especially when you claim you're committed to accessibility.)

I'm not in Chicago right now, and I'm only sad about that because that means I can't be with my fellow sick and disabled queer and trans folk who are there right now putting up with this ableist bullshit.

See you in the struggle.

Further Reading:

05 January 2016

You want real change to stop gun violence?

Content/TW: Liberal profanity (including many f-words), gun violence, institutions, police violence, racism, ableism. 

Photo: Hand-drawn cartoon of a hand holding a gun, and another person's hand putting the index finger down the barrel of the gun.

You want real change to stop gun violence? 

Stop throwing people of color and psych disabled people under the fucking bus.

I received an email yesterday from President Obama's White House Office of Public Engagement outlining his new set of executive orders (to be announced in full later today, along with the parent of one of the children killed in the Sandy Hook elementary school shooting in Newtown, Connecticut) on stopping gun violence. 

The email notes the following orders (necessary context, and you're welcome, to everyone wondering what the orders say since they haven't been totally public yet as of time of posting): 

[long quote begin]

Ensure States are providing records to the background check system, and work cooperatively with jurisdictions to improve reporting.   Congress has prohibited specific categories of people from buying guns—from convicted felons to users of illegal drugs to individuals convicted of misdemeanor crimes of domestic violence. 
The Administration is committed to improving care for Americans experiencing mental health issues.  In the last seven years, our country has made extraordinary progress in expanding mental health coverage for millions of Americans.  This includes the Affordable Care Act’s end to insurance company discrimination based on pre-existing conditions, required coverage of mental health and substance use disorder services in the individual and small group markets, and an expansion of mental health and substance use disorder parity policies, all of which are estimated to help more than 60 million Americans.  About 13.5 million more Americans have gained Medicaid coverage since October 2013, significantly improving access to mental health care.  And thanks to more than $100 million in funding from the Affordable Care Act, community health centers have expanded behavioral health services for nearly 900,000 people nationwide over the past two years.  We must continue to remove the stigma around mental illness and its treatment—and make sure that these individuals and their families know they are not alone.  While individuals with mental illness are more likely to be victims of violence than perpetrators, incidents of violence continue to highlight a crisis in America’s mental health system.  In addition to helping people get the treatment they need, we must make sure we keep guns out of the hands of those who are prohibited by law from having them.  Today, the Administration is announcing the following steps to help achieve these goals:

Dedicate significant new resources to increase access to mental health care.  Despite our recent significant gains, less than half of children and adults with diagnosable mental health problems receive the treatment they need.  To address this, the Administration is proposing a new $500 million investment to help engage individuals with serious mental illness in care, improve access to care by increasing service capacity and the behavioral health workforce, and ensure that behavioral health care systems work for everyone.  This effort would increase access to mental health services to protect the health of children and communities, prevent suicide, and promote mental health as a top priority.   
Include information from the Social Security Administration in the background check system about beneficiaries who are prohibited from possessing a firearm.   Current law prohibits individuals from buying a gun if, because of a mental health issue, they are either a danger to themselves or others or are unable to manage their own affairs.  The Social Security Administration (SSA) has indicated that it will begin the rulemaking process to ensure that appropriate information in its records is reported to NICS.  The reporting that SSA, in consultation with the Department of Justice, is expected to require will cover appropriate records of the approximately 75,000 people each year who have a documented mental health issue, receive disability benefits, and are unable to manage those benefits because of their mental impairment, or who have been found by a state or federal court to be legally incompetent.  The rulemaking will also provide a mechanism for people to seek relief from the federal prohibition on possessing a firearm for reasons related to mental health.

Remove unnecessary legal barriers preventing States from reporting relevant information to the background check system.  Although States generally report criminal history information to NICS, many continue to report little information about individuals who are prohibited by Federal law from possessing or receiving a gun for specific mental health reasons.  Some State officials raised concerns about whether such reporting would be precluded by the Privacy Rule issued under the Health Insurance Portability and Accountability Act of 1996 (HIPAA). Today, the Department of Health and Human Services issued a final rule expressly permitting certain HIPAA covered entities to provide to the NICS limited demographic and other necessary information about these individuals.

[long quote end]

Obama, you need to stop throwing psych disabled people into the sniper's crosshairs of political expediency. Your order urges the public not to add stigma to mental illness and people who have mental health related conditions or psych disabilities, yet its very substance directly contradicts this purported objective. Your order relies on stigma and fear around psychiatric disability, mental illness, madness, and neurodivergence by including this very section, let alone including it as part of your goal to keep guns "out of the wrong hands." 

I'm all for gun control in theory, but here's some cold, hard reality that you clearly need to swallow. 

(1) You can criminalize guns, but look how well that works with drugs. If someone really wants to get their hands on a gun, it won't matter whether they are legally able to obtain the gun or not; they will find a way to obtain the gun themself or through another person. 

(2) Your executive orders and virtually all policy proposals on the topic rely on background checks as the means for controlling gun purchases and ownership, regulating gun possession, and monitoring gun owners. As numerous other people have already discussed at length, background checks rely on arrest and conviction records, which mean that those who will be precluded from gun ownership (as you yourself already noted) are disproportionately Black and Brown people, since that is the demographic most likely to be impacted by the criminal (in)justice system.  

(3) Your executive order announcement here is waffling between emphasizing the importance of your mental health bullshit and apologetically trying to disclaim involvement by resorting to, "Well, we have to keep guns out of the hands of those legally prohibited from owning them by reason of mental illness." So are you doing it because you genuinely believe it's the right thing to do, based on your ableist, sanist prejudices against neurodivergent and psych disabled people, or are you doing it because the law so requires? And if the law so requires, why not consider that sometimes sorry, not sorry, most a ridiculously huge amount of the time, the law is fucking unjust and dependent on the same fucking systems of oppression and their underlying assumptions and values.

(4) Your executive order apologetically mentions that people with mental illness are more likely to be victims than perpetrators, but then goes right on ahead blazing into its scapegoating, business as usual. Stop. 

Some people with mental illness do violent things, including using guns in violent crimes. Plenty of people with absolutely no mental illness whatsoever also do violent things. Putting mental health into this conversation AT ALL is evidence of deeply rooted, ingrained, and thoroughly unexamined ableism. It is irrelevant. 

The relevant thing to be focusing on is actual violence and its actual causes. Not whatever scary scapegoat you want to pin it on so you can avoid critical discussions of the real problems in this country. 

(5) Your executive orders will require various federal agencies to ensure that states' can more easily share private health information about people with psych disabilities by creating specific exemptions to HIPAA. 

(For those who don't know what HIPAA is, it's the law that protects your private health information from the prying minds of anyone who randomly wants to know what STI's or STD's you have, when you've ever been prescribed psychiatric meds, etc. etc. etc. It's the law that makes sure your employers can't discriminate against you based on your health history by protecting your information. It's the law that for many people with psych disabilities, lived experience of mental health conditions, and others who have survived traumas, means that seeking any kind of services, supports, treatments, or therapies can become possible -- precisely because it protects against external judgment steeped in pervasive ableist stigma.)

You can't have it both ways, wanting to improve mental health services and also weaken the HIPAA protections that can prevent many kinds of discrimination, abuse, and exploitation. 

(6) Do we need improvement in mental health care? As a disabled advocate with pretty significant public policy experience, especially at my tender age, abso-fucking-lutely yes. Our system for mental health care service models and delivery is seriously fucked up. And that's the most polite way I can put it. We one hundred percent need better services, better quality services, more accessible services, more multiculturally competent services, more affordable services. Enforcement of the mental health parity law. Strengthening of network adequacy, especially in lower income and rural areas. Significant, vast improvements in services and care available for queer and trans folk. Et cetera. 

But that conversation does not belong in a conversation about gun violence. It is a separate conversation that deserves full time and attention, not to be inserted into this conversation as a placeholder for addressing actual underlying issues of widespread gun violence in this country.

(7) You don't specify what kind of care or services you'll be funding, so, excuse me if I'm skeptical, but I have a hard time believing you mean anything other than coercive, involuntary treatment along the lines of Murphy's proposal.

I keep hearing criminal justice reform advocates talk about how some people need treatment, not jail. Sounds great in theory, but institutions are just medical incarceration.

No thank you to ableist confinement and paternalism in the name of public safety over bodily autonomy and dignity.

If you want a conversation on mental health care, let's talk about disparities in access for rural people, for immigrants. For queer and trans people. For people of color. For other disabled people. Let's talk about the duplicitous nature of group homes with institutional environments. Let's talk about the insidious nature of guardianship -- "civil death." Let's talk about the severe funding shortage for peer services and supports.

Where are those conversations? Please tell me and I'll happily join.

(8) You want to stop gun violence? Demilitarize the fucking police, because it's the police that murder Black, Brown, Indigenous, queer, trans, and disabled people in droves. It's the police that implement policies like broken windows policing and stop and frisk. Where's your real talk on gun violence coming from the police who are in theory supposed to serve and protect? Who are they really protecting? 

Who will your background control really protect? 

(9)  Here are some of the real issues in this country: Unchecked (trans)misogyny. White supremacy. Male entitlement. Toxic masculinity. Quasi-property status of children and youth. The presumptions of caregiver benelovence and disabled incompetence. 

Here's a thought: maybe start addressing these problems, and see if you can stop some gun violence. 

You wanted a conversation on how to #StopGunViolence? Sit down, shut up, and start taking notes. 

12 December 2015

Why do I think I'm autistic . . .

This was actually originally a question on a survey as part of a research study (which asked me why do I consider myself to be autistic, in addition to having once been handed an on-paper diagnosis, which yes is a class privilege to be able to get), but my answer ended up being so long-winded that I'm going to put it here, just in case it's helpful to anyone who might be out there questioning and wondering whether they might be autistic.

(This is totally unscientific and unempirical, but based on anecdotal observations from conversations with hundreds/thousands of other autistic people -- both with formal diagnoses and without them, both speaking and nonspeaking, etc. -- it just seems that all of these characteristics are *more common* in autistic people than they are in nonautistic people, and that the more of these kinds of characteristics someone has, the more likely they are to be autistic. Obviously anyone who isn't autistic -- which includes neurodivergent people who aren't autistic -- could have any one or more of these characteristics too. And of course, there are characteristics of being autistic that seem to be really common in autistic people, especially as compared to nonautistic people, that I don't have.)

Like many (but of course, not all) autistic people, I ...

- Keep an erratic sleeping schedule, and am often nocturnal by both instinct and preference.

- Absolutely suck at executive functioning, which involves planning tasks, prioritizing tasks, initiating tasks, following through on tasks, meeting deadlines, organizing complex multi-step tasks, etc.

- Have very uneven skills academically, but present as conventionally "gifted." I functioned really, really well academically from K - 12, and then when I went to college, a lot of coping skills died. I developed some stuff, sure, but I know some stuff went straight out the window too, because huge changes, and also almost total lack of structure/scaffolding. ("Now you're an adult, and you must be totally independent, and if you can't do that, too bad f u.")

- Have hypersensitivities in all my senses (to noises, to smells, to tastes/textures, to touch/tactile sensation, to sights), which create both (1) sensory-seeking opportunities (I still rub a silk sleeve over my face -- the very same one I've had since I was 3 and I'm now 22; also, tassels tassels tassels -- yes I did in fact get a picture of myself inside the White House rubbing a tassel there all over my face) and (2) sensory-averse reactions (I am physically hurt by a lot of fluorescent lights; also, touching me lightly -- not firmly -- hurts).

- Tend to be more oblivious to surroundings/background information/implied knowledge. (This includes social knowledge -- everyone else picks up on updates in people's lives/doings much sooner than me; spatial knowledge -- I can't recognize the same location in the dark versus in the light and also won't realize that objects/buildings/things exist unless they're explicitly pointed out to me; etc.)

- Frequently speak in circles, because I have extreme frustration when I believe the other person/people do not understand what I'm trying to communicate, so I attempt to rephrase (and can rephrase an infinite number of times, and go on for-fucking-ever with this unless stopped).

- Take great pleasure out of intense fascination with particular topic areas in ways that non-autistic people often do not.

- Relate to other people (and show that I care about them) specifically by seeking out gifts/activities/internet memes/other tangible or observable things that relate directly to their preferred interests or activities, but am often perceived as just creepy or weird by non-autistic people for doing this.

- Absolutely hate crowds and crowded locations because they're overwhelming and drain me of energy to start, do, or finish things, or just to concentrate, or just to survive.

- Occasionally lose the ability to produce oral speech even though I usually have the ability to use oral speech, especially when under extreme stress or exhaustion.

- Stim, like by using my tongue around my mouth in specific ways, or touching specific kinds of textures, or spinning in circles for a long time, or playing with water forever, including in fountains attached to government buildings, which results in being yelled at by security. (I stim when I'm anxious, when I'm bored, when I'm upset, when I'm happy, or when I'm excited. Also when I'm trying to communicate to another autistic person that I exist and am also autistic.)

- Tend to like certain types of structure and routine in ways that are not typical for non-autistic people. For example, whether playing with toy cars, Barbie or Bratz dolls, or Star Wars action figures, I would always line up all of the figures in specific orders/formations and three-dimensional spatial locations in my play area that almost never changed, which confused the hell out of all of my non-autistic friends/playmates. In another example, I'm also totally okay with eating literally *the exact same thing* for every meal for months on end, and this does not bother me.

- Extremely detail-oriented. For example, I write novels and do collaborative writing style roleplaying, and in both, I typically develop in immense detail aspects of constructed languages, socio-economic-political systems, cultural norms/histories, etc., as well as populating worlds (both those based on the real world and those that are totally sci-fi or fantasy settings) with hundreds or thousands of characters thought out in depth.

- Am highly attracted to and empathetic with animals (like cats and dogs) and fictional characters, which I feel are like real people and whom I care about in the same way I do as real people.

- Tend to take an incredibly long time to develop close friendships with people, and am constantly afraid of losing any of the friends that I have, because many of my closest friends in the past aren't my friends anymore (often but not always because they decided to not be my friend because I wasn't cool).

- Was severely bullied throughout school, both by other students and sometimes by teachers, for being an obvious weirdo. I'm usually perceived as out of touch, socially awkward, weird, abnormal, and just not with it when compared to a lot of my peers.

- Won't shut up when I really care about something, and am often perceived as arrogant, stuck-up, a know-it-all, full of myself, showing off, etc. even though I'm just trying to share information that I think the other person will care about or benefit from having.

- Don't really think in linguistic concepts/language. I think both visually and conceptually. So my thoughts happen in images (still pictures, moving videos, or four-dimensional fluid shapes/lines/fields/things-that-aren't-describable-but-I-probably-sound-like-I'm-under-the-influence-of-LSD-now) that represent concepts.

- Hate group work. With the burning passion of ten hundred thousand flaming suns gone supernova.

- Can be both hyposensitive (not that sensitive) or hypersensitive (so much sensitive) to pain. Like, I scream and cry when getting shots. But after having my wisdom teeth out, due to combination of apparent stoicism and serious sensory aversions to any pills ever and most liquid medications, didn't really take any pain meds once I went home.

- Tend to be either really good intuitively at doing a thing, or really, really suck, and I keep sucking at it in the same pattern of sucking at it.

- Think systematically or in patterns. See above. (Example: If I'm worried or anxious about something, I will repeatedly go over every possible outcome, from the best possible one to the worst most catastrophic one, and everything in between, in great detail as to how/why each could happen, and the likelihood of each outcome, but despite knowing rationally that the most catastrophic ones are usually not that likely, will still anxiously panic over the possibility they are true.)

- Rely on scripts (entire encounters, types of situations, for behavior, or for what to say, etc.) for like 95% of my interactions involving other people, including other autistic people.

- Really, really like the feeling of pressure against my body. I often sit with legs/ankles crossed so I feel the pressure, or with my hand between both knees (I've learned that people assume I'm sexually touching myself in public if it's any higher up my leg). I like to sit so that my legs/ankles/feet can press against the legs of chairs or tables. I like to fall asleep with my arms tucked under my torso. Weighted blankets are awesome.

- Have some super awesome fine/gross motor skills, and some totally sucky fine/gross motor skills. For example, I have highly calligraphic scripted handwriting, and do black and white drawings in pen only (no pencil involved ever) with highly detailed cross-hatching. But then again, I've never reliably learned how to tie my shoes or do monkey bars or jump rope or hula hoop like most other kids I grew up around did.

- See squiggly bright lines and dots of various constantly-shifting colors whenever I'm conscious, which includes as I'm falling asleep too. (I'm sighted, which means I'm neither blind nor low-vision -- not sure how/if blind or low-vision autistic people have these things.) Some people call them "the floaters."

- Always see the world in static (like the kind of "noise" that makes photos not great quality). Someone asked about this on the Facebook, and yes, I have the thing where I always have thought I was seeing molecules or something everywhere, in all lighting and wakefulness/sleepiness conditions, because the whole world is comprised of these tiny dots that make up literally everything I perceive visually.

- Have HIGHLY vivid, frequently narrative dreams, many of which I remember in incredibly detail. (Many of mine are also lucid.)

- Am synesthetic, meaning I experience many kinds of sensory input as *other* kinds of sensory input. Like, listening to music or even someone just talking, produces colors and shapes and yay.

- Will re-read or re-watch entire books or movies or tv shows -- or specific scenes in them -- that provoke deep, intense emotional reactions in me.

- Am highly empathetic to the point of over-empathizing. I may not always be able to process cognitively what I'm experiencing (see point below), but I am overwhelmed by the emotional responses of people around me -- which includes things I read on the internet, because I'm experiencing them as the other person does. (Not in the way of, I know how it is to be them when I'm not them or don't have the same experiences, but in the way of, their anger settles in me, or their sadness settles in me, and I can't get rid of it.)

- Have trouble identifying/naming and separating/distinguishing all of my emotions or even bodily sensations.

- Am not antisocial. I'm an introvert, but I display a lot of outwardly extroverted-seeming traits, like talking to lots of people, going to events with lots of people, and having people over my place. Social interaction can be fun (or can suck massively, depending on who is involved and what they do to/around me), but it's draining. I need lots of extra time to recover. This is true even if the other people involved are also autistic.

- Desire to have some amount of environmental control that it seems like nonautistics tend not to have (either in general, or as intensely). Like, I get really anxious if other people touch or move my belongings/possessions, even if they're people I know really well and trust in general.

- Show that I trust others by opening up to them, emotionally and about my experiences.

- Often feel marginal and like an outsider (not just because of various marginalized experiences/identities that I have) even when I theoretically should be able to belong to a particular group.

- Typically have gravitated to be friends with people who were significantly older or significantly younger than me, and not my age-peers.

- Tend to do activities the exact same way all the time (like how I make pasta sauce or mint hot chocolate) even when I learn a better/easier way to do them. This extends to what I order in restaurants. (I love trying new foods, actually, but if I know I have a favorite thing, why wouldn't I order my favorite thing? Why would I order a second or third favorite thing?)

- Experience distinct auditory processing disability stuff. I hate conference calls maybe almost as much as ISIS hates the existence of everyone-who-isn't-ISIS. I will almost never understand your name the first time you tell it to me unless it's also on the business card you're handing me or the name tag stuck to your shirt / hanging from your neck or the placard in front of your face. You have to repeat it.

- Can't recognize faces. (It's called prosopagnosia or faceblindness.) As a sighted person, yes, I do see your face. I am capable of seeing people next to each other and realizing they do not look identical, even if they present their gender very similarly, are close in age, have similarly sized/shaped bodies, and are from the same racial group. But I can't reliably tell people apart in sequence, or out of context from when/where/how I usually encounter them, or after a few days or weeks or months since regular contact. I can sometimes, to varying degrees of reliability, recognize people on other characteristics, like voice, manner of speaking, posture, body movement, other distinctive physical features, or hairstyle (including facial hair when someone has it), but not by face. I can also figure out if someone else knows me often by their body language (like prolonged eye contact, suddenly smiling, or referring/addressing me by name when I'm not wearing a nametag or ID), but I have no clue who they are and will *never* have the experience of feeling like I recognize someone but not remembering their name. Half the time I'm faking that I know who you are. Just tell me your name up front next time.

- Have significant trouble in group settings including purely social, unstructured ones. I can never tell if it's my turn to talk, or if there's an opening where it's okay to jump in with a comment/question/story in the convo, and frequently, by the time I figure it out, it's too late and suddenly I'm interrupting someone and have just become an accidental asshole.

- Collect random shit I don't actually need but am somehow convinced I will need later. Like receipts. Dating back to 2004. And fortunes from fortune cookies. And tags from clothes. Literally everything. All this totally useless stuff that it pains me to toss out because what if I need it one day.

- Have vastly varying periods of total distractibility where absolutely nothing happens even things that really should (like eating food) and periods of doing ALL the things!!!!!!!!!!1eleventyone where way too many things somehow happen. I don't reliably have the same abilities, skills, or energy/capacity to do the same things from one point in time to another.

- Can hyperfocus for hours at a time on ironing out the tiniest of details necessary to complete one activity/task, to the point where I forget that things like pissing/shitting/eating/drinking liquids are things that a body generally needs to do. For over 18 hours sometimes.

- Hate tags. Yes, tags. They are horrible. Why do people insist on putting them on clothes? Anywhere? Ever? But seriously, especially the really large, stiff ones in some shirts right where the neck is.

- Suffered for having my extremely thick, easily tangled hair (which used to be very long, especially as a kid), which meant I went through what both my partner and I call the Daily Torture Session. It was worse than just frustrating or annoying. It was actually painful and it sucked. And no one would believe me most of the time, because they assumed I was just exaggerating or being overly dramatic. But it's true.

- Often begin to talk louder and louder, especially when I'm excited about something (which can include being excited about knowing about something), without realizing it, or being aware of exactly how loud others perceive me as.

- Constantly grind my teeth or chew on my own tongue (to the side of my mouth). I'm not sure if it's a pressure-seeking thing, or another kind of sensory-seeking, or a specific kind of stimming, but it's been a thing my whole life, and was the reason I had to get a retainer when I was a kid. I know a lot of other autistic folks who bite or chew on their fingers, hands, or arms as well as or instead of doing the teeth grinding thing.

- Have a very powerful and strong, intuitive sense of justice and fairness. It hurts when something seems wrong, when someone seems like they're being fucked over. I usually immediately relate to and identify with the underdog or the outsider.

- Don't care much about certain types of reputation/outward perceptions of me (like, buck the system; think whatever you want to think; fly that freak flag high; I'm here and queer get used to it; I once showed up to a White House event in a t-shirt while everyone else was in Western Business Attire; etc.) but am also extremely anxious about what others think of me vis a vis my character, my integrity, whether I'm worth being/having around.

I'm sure there are many more, but another thing I have is anxiety around lists because I'm always wondering if I left something off the list (and usually do/did). (Bonus! If you keep coming to this page enough, you might notice I keep adding to this list, for the reason stated earlier in this paragraph!)

No really, I wasn't kidding about the White House tassel thing: 

From December 2013, inside the White House. Clearly the thing to do is to find the nearest large fluffy tassel and rub your face all over it in stim-heaven.

My original description:

The tassels on the drapes were SO STIMMY YAY. (Pretty sure this is not the normal way to act in the White House. OH WELL.)

A total stranger took this picture because I apparently was hilarious? So I got them to email it to me, for your viewing pleasure.

Photo by Nicole Shambourger.

Image: Me dressed in a dark pantsuit and patterned, embroidered red scarf, very happy, sticking my face into a giant tassel decoration on drapes in the Green Room of the White House.


If you are wondering or questioning whether you or someone you know might be autistic after reading this post, here are some resources that could be helpful:

03 December 2015

too dry to cry

Content/TW: Gun violence, mass shooting, detailed discussion of ableism and racism (especially against Black and Brown people) surrounding such events, mention of sexual violence, occasional swearing. 

I haven't written nearly as frequently for Autistic Hoya in the last two years or so as I did for the first few years that this blog existed. It seems that the few times I interrupt my long absences here now are most often for devastating news -- for writing flowing straight from my pain, and sometimes my anger, and often quite a bit of both.

About a year ago, I wrote here about the passing of my friend Ki'tay D. Davidson, a fellow trans, disabled, PoC writer and organizer, whose brilliant work and everyday magnificence have continued to inspire many of us to dream and to breathe love in all we do (as he said) while striving for justice.

Today marks exactly one year since Ki'tay's passing. I remember going the day not knowing he'd gone that morning, preparing all day for the panel on disability justice and feminism I'd organized that night. I remember learning of his passing afterward. I remember not believing or accepting the news as real. Of course it was strange. So many of us feel Ki'tay's absence deeply, intimately, acutely. As the #Justice2050 campaign says, he is love(d).

Today, there is too much. Too much.

Today, the top news story in the U.S. is the hours-long mass shooting at the embattled Inland Regional Center in San Bernardino, California. The Inland Regional Center is responsible for providing and coordinating community-based services to over 31,000 people with developmental disabilities (likely including many autistic people) in San Bernardino and Riverside Counties east of Los Angeles. At last count, 14 people are estimated to be killed and 17 additional injured. The shooting went on for hours. So far, we know that the shooting happened inside one of the buildings, at a county-wide event honoring healthcare professionals. We don't know who specifically the attackers targeted because the victims haven't been publicly identified yet. Police have counted three suspects -- two men and a woman.

I learned about the shooting while it was still happening. I was in class.

TASH is hosting its annual conference in Portland, Oregon right now. A friend told me the conference is reeling.

My email inbox has exploded with messages on disability lists reacting in real-time to the attack.

Every time I glance at my phone, I see more news updates scrolling across the mobile browser, telling me police have killed two suspects, are searching an apartment for possible explosives, won't release identities of the dead until next of kin are notified, are speculating about motive.

My Facebook news feed is equal parts horror and disgust and fear and sorrow and anger and brokenness and fragility from this community, these many fractured communities, where I have learned to live and love and suffer and often, to cry.


I was going to use "Anti-ableist ways to respond to today's ongoing tragedy in San Bernardino" as the title for this blog post. But it sounds too artificial. Too prepared. Too hollow.

I wanted to write this because I can't stay silent. I can't. Not when those struggling alongside us, those attempting to practice allyship, those not directly impacted by ableism want to know what to say or do. How to react.

We have a saying in culturally autistic spaces -- "I need help reacting to something."

I do. It's nameless things dismantled all over again.

Minneapolis. Chicago. Beirut. Yola. Kano. Baghdad. Paris. Colorado Springs.

Now San Bernardino.

I can't. I just can't.

The trouble is, it's less that I can't react than that I'm crashing from trying to react to too many things all at once. Made it home from school in the rain. One load of laundry done. Dinner for four made, eaten. Dishes washed, put away. Old exam questions pondered, discussed with fellow classmates. Emails sent. All while forcing myself not to feel too much. Not to think. Just to act. Follow a script. A routine. Forget I am real. Forget I inhabit this taut and trembling flesh.

This is empathy overload. This is emotional shutdown. This is autism.


There was a news article earlier today quoting someone from the FBI describing the attackers as "Americans, not terrorists." Somehow totally missing the complete irony of just how full of terrorists the U.S. always has been and continues to be, in both state sanctioned and individual forms.

Our country is steeped in violence. For the vast majority of us in the U.S. who are not Indigenous or Native, we live on stolen, colonized, occupied land.

In our Property class in law school today, a student objected to the concept of adverse possession (when someone can gain ownership of someone else's land/real estate simply by occupying it for a long time without the owner's permission), saying, "But this is America!" And a number of us responded that, well, nothing could be more American than taking someone else's land. After all, that's how this country was built.

Not too far from our school, there was a rally today at Ruggles Station against police terrorism targeting low-income Black and Brown communities, as we have learned of the police murders of more unarmed Black men -- Jamar Clark in Minneapolis last month and Laquan McDonald in Chicago last year, whose death was videotaped and covered up by not only the police department but its commissioner and the city's mayor.

President Barack Obama described himself as very good at killing people, as the number of Brown people killed by remotely operated drones has risen higher under his administration than under the George W. Bush one.

Transwomen of color face routine violence in the streets from strangers and police alike. Women who dare criticize men or even acknowledge misogyny risk terrifying, brutal retaliation. My psych disabled and mad, neurodivergent friends live with constant terror of possible incarceration in the name of treatment and public safety. While my light skin and educated words lend me some measure of protection, my Black and Brown friends risk their lives upon encountering a police officer for so much as existing.

But of course, the term "terrorism" is steeped in a particular racism that attaches it only to Brown people and those racialized as Muslim.


It's everywhere on Twitter, Facebook, anywhere you care to check. Ordinary folks expressing shock, horror, outrage that anyone might target disabled people for violence. Surprised by it. Wondering how, how could anyone go after the disabled?

My friend Maddy Ruvolo says, "So many people talking about how they can't believe shooters would target disabled people like they're not complicit in the violence disabled people face every single day. If you're surprised by violence against disabled people, you haven't been paying attention."

This narrative is superficially sympathetic, but it's plied with the pity endemic to pathologizing ways of thinking about disability. It depends on understanding disabled people through pity/charity frameworks, on infantilizing us as eternally untouched by reality (negativity, fear, violence, malice) on the presumption of incompetence.

Expecting disabled people to be angels, innocents, somehow specially exempt from reality -- similarly to the misogyny in the idea that hitting women is somehow especially wrong, but hitting men is normal, if still wrong. Thinking about us as objects, not subjects, not agents of our own destinies. Treating disabled people as some specially innocent population, as readily available charity/community service projects here for abled people to feel good about themselves for being nice to us -- for not calling us retarded, for not refusing to let us in the room, for not staring. Relegating us to a constant position as objects for the edification of abled people.

(Sign up for Best Buddies. Be friends with a person with a developmental disability once a week and occasionally at group events with all the other people with developmental disabilities. Give yourself a pat on the back. Grow some warm feelings. Make the person with the disability smile and believe you are really their friend. Never or rarely include them in your other outings with your regular friends. Never confide in them your trust. Never think of them as simply another person you know. Consider yourself a do-gooder. Don't wory; the disabled person won't notice.)

Wondering who could hate disabled people.

Believe me, plenty of people do. Hate is nothing new. And no, pity and hate are absolutely not mutually exclusive. Sometimes they depend on each other.

Over half of people killed by police are disabled. I think of Stephon Watts, Steven Eugene Washington, Natasha McKenna, John Williams, Mohamed Usman Chaudhry, Kajieme Powell, Freddie Gray, all disabled and Black or Brown.

One study found that 83% of women with developmental disabilities will be raped at least once in their lifetimes, and that more than half that number will be raped at least ten times before the age of eighteen alone. That almost 40% of men with developmental disabilities will be raped at least once in this lifetime.

What terrifies me is that these numbers are probably conservative estimates.

This is ableism.


The Los Angeles Times announced that police named Syed Farook as one of the shooting suspects.

Of course the first person named a suspect in the shooting has a name racialized as Brown and Muslim -- and when the articles begin to appear, his neighbor discusses how he became more outwardly religious (or was perceived that way), predicated on the presumption that of course, this is relevant. Of course it matters that he grew a beard. That he began to wear non-Western clothing. We are expected to read these details and assume the rest of the narrative -- young Muslim becomes a terrorist by becoming more Muslim.

(They say the second shooter is Tashfeen Malik, now giving the public two identifiable Muslim names.)

How soon will the FBI's earlier description of the shooter as a U.S. citizen be forgotten? How soon will news coverage shift to obsessive nitpicking over Syed's religious identification and practices, speculating about connections to Daesh (ISIS) or Al Qaeda or some other such group? How soon will the rhetoric shift from the ever-familiar refrain of "we need to fix the mental health system" to "this was possibly terrorism-related?"


Congressman Tim Murphy's pet project, House Bill 2646, is moving rapidly through Congress. We know it as the Murphy Bill. You might know it as the Helping Families in Mental Health Crisis Act.

He began pushing this bill right after the Sandy Hook shooting in December 2013.

It's the kind of measure that sounds superficially nice and potentially worthwhile. He cloaks it in the rhetoric of public safety, greater good, better mental health services. The lie that these mass shootings are the product of mental illness.

Here's what the bill does: Pumps funds into involuntary, coercive treatment through both inpatient and outpatient commitment. Incentivizes states to increase use of involuntary, coercive treatment. Cut funds from community-based programs, services, and supports. Slash funds for the national network of protection and advocacy systems that work to promote the rights of people with psych disabilities -- a network created in large part because of horrifying revelations about the all-pervasive abuses in institutional settings (the psych ward, the mental hospital, the long-term residential institution). Weaken doctor/patient confidentiality protections for people with psych disabilities.

Its supporters will tell insist that mental health reform is necessary to stop gun violence.

We know we need better mental health services. We know the existing system is riddled with failures, is a frequent source of (re)traumatization for so many of us.

But these issues are so separate from gun violence.

Stop pathologizing violence. Violence is not a mental illness, but psych disabled people, like all disabled people, live with the constant possibility of violence and abuse in this profoundly ableist world.

They will tell you that jails and prisons are now the nation's largest mental health care providers. That people with mental illness don't belong in jail or prison, but instead in specialized facilities. That they need treatment instead.

Don't believe the lie that new asylums, new mental institutions are anything other than a different --and often, far less regulated -- form of incarceration than the penal institution.

Disrupt the pattern of disability hierarchy. The Inland Regional Center's clients with developmental disabilities undoubtedly include many, many people who also have psych disabilities. We will find these narratives -- that (1) people with developmental disabilities are innocent angels incapable of understanding violence, and (2) people with psych disabilities are unstable, potential murderers waiting to happen. We will find these narratives everywhere.

This is ableism.

(And often, in the wake of gun violence by white people, it's also the racist effect of white supremacy. No matter whether the murderer writes a terrifying manifesto against women or repeatedly espouses white supremacist causes before targeting Black people at prayer, white supremacy insists on exempting whiteness from violence by scapegoating the specter of madness instead.)

These lines have well-worn grooves in our newspapers and frequently-visited websites. They provide a familiar refrain, one that rips and breaks and tears at me.

Here, where those dead, injured, and left surviving, left reeling may well be disabled like me, I can't begin to respond. I don't understand this pain. But I know it. It's written all over me.


We have to hold space for each other.

Make space for us to relax. To heal. To dream. To mourn. To cry. To scream. To not have words. To feel empty. To process this jumbled fucking mess. To recover. To find new scars.

Ask us what we need.

Remind us that we are valuable, that we matter, that we deserve to exist, and more than that, that we deserve to exist in a world where we genuinely care for and about each other. Where our wobbly, sick, lopsided, drooling, asymmetrical, neurodivergent, mad, crip bodies are welcomed and loved and honored.

Join us in our struggles.

Morning, with its promise of familiar routine, waits for us.

"I want to believe in peace. I want to believe we can unlearn violence & affirm our interdependency. I dream of a community of lovers, who navigate pain, joy, laughter and grief together, collectively & with care; experiencing endless beauty. I think I am dreaming of a modern day heaven, or perhaps I am dreaming of the good we were meant to be."

Ki'tay Davidson, Why I Quit Philanthropy


Image Description (courtesy TL/Talila Lewis): Dark rectangle with the above quote and a photo of Ki'tay during a presentation to disabled youth. Ki’tay is smiling with an open mouth and snapping in celebration of a great comment by an audience member while facilitating a Disability History, Culture, and Pride workshop for youth with disabilities during the summer of 2014. Ki'tay is holding a microphone in his left hand and snapping with his right. He is wearing a black shirt, orange pants and a black hat.