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