11 February 2016

Disabled people are not your feel-good back-pats.

Anyone who watches Orange is the New Black remember the cringe-worthy Caputo episode? (S3, E11. "We Can Be Heroes." Yep, that's the title of it. And no real spoilers ahead in this post for people who didn't watch Season 3.)

So the whole drawn-out thing is an exercise of Caputo (terrible prison administrator who is for probably horrible patriarchal, misogynistic reasons portrayed as the not-as-bad-guy, for the non-fans) trying to prove that he's a decent human being (spoiler alert: he's not). Maybe the producers/writers/whoever wanted him to seem human and relatable. The theme revolves around this line that keeps coming up, that he's always holding doors open and upset when no one thanks him. (Reminiscent of the MRA core belief that politeness and everyday decency toward women somehow create a right to sex with them.)

The opening flashback takes us to Caputo's high school years as a varsity wrestler. Stereotypical high school star athlete, captain of the team, that whole shebang. The coach has the team huddled together before the meet, and tells them that one of the wrestlers among them has taken one for the team and volunteered to do an exhibition match with this student from another high school. The coach tells them the other student has always dreamed of being a wrestler and now his dream will come true. The coach reveals that the volunteer is their team star, young Caputo, and calls Caputo a "real hero." Caputo, smiling, says, "I'm gonna make him feel like he's really doing it."

Here I am watching this, already cringing, about 99.99% sure I can already predict exactly what's about to come in the next shot.

BAM. Now Caputo steps to the ring, along with another high school student, also in wrestling gear. The announcer introduces them as "two very special wrestlers" before giving their names to the audience. The student from the other high school, predictably, has Down syndrome, a now easily recognized apparent disability.

Typically, the story ends with the non-disabled participant "heroically" letting the disabled person (usually a person with an intellectual or developmental disability) win. The underlying assumptions, of course, are that (a) disabled people are incapable of winning or even competing alongside everyone else because we are automatically not good at anything ever, and (b) disabled people lack awareness of reality so much that we can't tell when others are patronizing or condescending. In OITNB, the plot takes a different turn. Kendall Barnes (the student with Down syndrome) turns out to be so strong and physically powerful that he injures Caputo badly enough to prevent Caputo from ever competing again.

Sadly, as those of us in the disability world know well by now, these stories don't flit about only on the silver screen. They're also everywhere in our mass media and social networking. Sometimes they're posted with clickbait titles -- "You will cry after watching what this wrestling jock did for a special needs kid." "Tear-jerking video of girl with Down syndrome singing special song with local choir." "5 heart-warming stories about everyday good deeds from the kids in the autism classroom down the hall." "What this prom king did for special needs classmate will restore your faith in humanity."

(Ugh, now that I've typed these out, as in actually, legitimately, typed them out, I'm going to go vomit. Be right back.)

Stella Young, the late disabled activist as known for her wit and sharp analysis as for her snazzy outfits, called this phenomenon "inspiration porn." Many of us call it inspoporn for short. It refers to the omnipresent trope of stories that tend to fall into one of three categories:

(1) Disabled person does something extremely extraordinary (climbs Mt. Everest, is elected to a country's highest governing body, publishes New York Times bestseller, etc.), and it's presented as inspiring because the person is disabled, and not because 99% of the total population (disabled and non-disabled) could have never achieved it.

(2) Disabled person does something pretty mundane for most people (graduates middle school, plays in a basketball game, bakes cookies, etc.), and it's presented as inspiring because apparently disabled people are assumed to be incapable of doing ... anything. At all. With or without adaptive equipment. With or without practice and instruction geared to their learning style.

(3) Non-disabled person does something not overtly negative or generally shitty to disabled person (doesn't call them names, invites them to a birthday party or a prom, doesn't discriminate against them during a job interview, etc.), and it's presented as inspiring because LOOK AT THE MAGNANIMOUS, KIND-HEARTED (non-disabled) SAINT BEING NICE TO A PERSON SUFFERING FROM A DISABILITY. (*language intentional)

(Note there is often a racial component to these stories too: white disabled people and or white "helpers" present more easily accepted caricatures of saintly, angelic, heroic, courageous, inspirations.)

In other words, inspoporn is a collection of overcomer, supercrip, and saintly helper stories. The common undercurrent to all types of inspiration porn, however, is the disabled person's role in the story. Instead of being an individual character, fleshed out and made fully human and at least potentially relatable to the reader/viewer, the disabled person (or disabled people, if there's a group) exists as a prop for the non-disabled person in the story. The disabled person's existence serves as edification for the non-disabled people around them, or as a moral yardstick to measure whether the non-disabled people (the ones who are relatable as main characters to the presumed non-disabled only audience) are sufficiently good tolerant people who are minimally not shitty. This is not the same as being actively anti-ableist, by any stretch of the imagination.

Ari Ne'eman, Autistic Self Advocacy Network co-founder and president, describes the third category of inspoporn as Very Special Episode syndrome -- where a disabled character is newly introduced for one or a few episodes of a long-running series (in a book or film, this could easily be adjusted to a single chapter, single scene, or background plot) to teach the main characters (of course not disabled themselves) a very important lesson about tolerance before going back to the institution or special needs school where they "really belong."

So you can imagine my dismay when I came across this post in a law school's Disability Law Society social media page:

Photo: From a Facebook group for a Disability Law Society, a link to a news article. The original comment is, "This is what a true leader looks like :) [smile] " The article title is "Norton High School wrestler allows for dream win," and its description, "A high school wrestling champion is undefeated no more after answering the call to make another wrestler's wish come true." The photo shows two smiling young white people, one without an apparent disability (Deven Schuko) and the other a person with Down syndrome (Andy Howland), both in a gymnasium with wrestling championship banners. I commented below, "This is inspiration porn. This kind of patronizing story treats disabled people as objects of pity who don't understand if we're not "really" winning so we can make non-disabled people feel good about themselves. We don't need heroes or saviors."

This is not leadership. This is self-gratifying ableism. This is objectifying the young man with Down syndrome. This is infantilizing the young man with Down syndrome. This is placing this non-disabled wrestler on some kind of magical pedestal for participating in an inherently condescending activity that presumes incompetence on the part of the young man with Down syndrome and heroics on the part of the non-disabled wrestler. This is focusing the narrative on the person without a disability so the readers can laud him as a hero and a savior. This story is not about leadership. It's about pity, condescension, and cheapened do-gooding masquerading as heroism. It's about tokenism and commodification. It's a story about privilege and power, and the abuse of that privilege and power rather than the intentional use of it.

(Andy Howland lives in the twenty-first century. It's not hard to find out, if he didn't already suspect, that Deven Schuko intentionally lost. And how exactly do you think that's supposed to make Andy feel? Respected? Equal? Bullshit.)

Repeat after me:

Disabled people are not your feel-good back-pats.

Disabled people are not your cheap do-gooder points.

Disabled people are not your good tolerant person moral yardstick.

Disabled people are not your charity projects.

Disabled people are not your community service.

Disabled people are not your emotional commodity.

Got that? Good.

Spending a few hours a week around us, under the assumption that we cannot and do not understand the conversations you have about us, does nothing to challenge assumptions about disabled people. Cloistering us into special programs and exhibition matches does nothing to promote genuine, sustained, meaningful inclusion of disabled people into spaces that should be open to everyone but in reality are only open to a few. Volunteering to ask us on a pity date to the prom, pretending to compete while intentionally losing at a sport, including us once a month or year at your activity or program -- these things do nothing to challenge ableism but everything to perpetuate it. This type of faux inclusion and feigned friendship serve to isolate, stigmatize, and reinforce negative assumptions about disabled people -- assumptions that have incredibly harmful consequences beyond the exhibition match or special prom.

Do you want to support disabled people? Do you want to be more informed, more educated, less ignorant, and less foolish? Then start by paying attention to what we have to say. Start by learning the tools of practicing allyship. Start by assuming that your assumptions are wrong or at the very least, misinformed. Start by questioning narratives that seem to be much more about a non-disabled person's supposed heroics than about a disabled person's humanity and agency in controlling the narrative about them. Start by focusing less on some special one-time event or photo shoot, and more time on the systemic problems in your backyard -- the high rates of bullying impacting students with disabilities, the fact that the school to prison pipeline impacts disabled Black and Brown students more than any other demographic, the high rates of homelessness and unemployment, the overall lack of access to affordable and accessible healthcare especially for rural or queer or trans disabled folks, the consistent denial of access to adaptive equipment and communication devices, the high rates of sexual abuse and killings by family members, the daily torture rituals that many disabled people suffer from in the name of "treatment" and "therapy" and "cure." Ask why disabled people are routinely excluded in the first place such that would-be do-gooders assume our only option is the pity-based special event, and work to change that reality.

Start by treating us as partners instead of projects, and maybe, just maybe, we'll start to get somewhere.

Read more:

10 February 2016

An Open Letter to the Educators That I Work With

Photo: Nine people, including Lydia Brown, of various gender presentations, races, and dis/abilities statuses sitting on a carpeted floor in a college classroom painting and drawing posters about disability representation. Two paintings involve eyes -- one a symbol for blindness, and one with a heart instead of the pupil; another painting involves a tree; and a drawing depictions of various autistic activists. From Diversability Art Night at Georgetown University, 12 March 2012.

An Open Letter to the Educators That I Work With 

This anonymous post comes to Autistic Hoya from the same anonymous contributor who wrote "How to be an Ally to Sick People," "A Guide to Sighted Allyhood," and "How to be an Ally for People with PTSD."

Having a bad day? Stressed out? Under-slept? Headache? You were so kind to me when you could tell I was under the weather and checked in with me.

You were so grateful when I acknowledged that your caseload just doubled and how stressful that must be.

You were quick to tell me it's not the caseload. It's the "behaviors".

You were so sweet to your colleague on the phone asking how he's feeling today.

Where does that empathy go when you yell at your student for saying "yes" in the wrong tone of voice (because you know, she had a headache today--I asked).

What about your tone of voice with her? You know, you yelling at her and everything?

Where is that kind-heartedness for your student who is struggling to stay awake because he couldn't get enough sleep last night due to his home situation?

Where is that sweet voice you used with your colleague? Why is your voice all the sudden so harsh and demanding with your students?

How come you extend so much compassion to me, but not to our student?

Why does your compassion-o-meter shut off so suddenly as soon as the person you're talking to is under 18?

Why do you think that yelling at your students is going to help at all? If they are struggling, isn't there some part of you that realizes that what they need is tender-heartedness?

Why can't you let your students have a bad day? Why can't you let them have their own feelings? Why can't you allow them to be human?

Why is it a "behavior" when a young person sighs in exhaustion, meanwhile you literally just sighed when you came in the room because you're exhausted?

Why are you literally keeping these students in detention for doing the exact same thing you just did...in front of them?

Why do you think every little micro-behavior is about you? And not about them trying to regulate and soothe their mind-body-spirit in this environment?

How can you complain to me about how these students are so "high-functioning" and shouldn't be "disruptive" (your term for stimming), while not even seeing that the adult in front of you is also a so-called "high-functioning autistic" who has the same exact mannerisms?

How can you not see the double-standard?

No, really. How do you not see it?

My heart shatters every time I witness once of these interactions. I know I break all the rules. I allow them to be tired, to have a bad day, to be imperfect humans in my presence. I know, I know. I let them stim. The sacrilege. I don't constantly language- and behavior-police them. I make reasonable allowances and accommodations for their disabilities.

I'm not going anywhere. I refuse to let them be numbed. I refuse to let them be hardened.
And I encourage you to go within. Reconnect with the young person inside you. Nurture the child within. Being compassionate with yourself. Heed your inner child's wisdom.

Let you be. Let them be.

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.