16 November 2015

In Solidarity with Black Students at Georgetown University

Photo: Brick outside wall of the Intercultural Center (ICC) with chalk lettering that reads, "Black Students of GU, Your Allies Stand With You."

I did not write the text of the letter below the asterisks (and do not want to claim credit for the words -- it's circulating among many conscious and conscientious alumni), but I wholeheartedly endorse it as a non-Black alumn of color only recently removed from the Hilltop. I experience daily the damaging effects of white supremacy and structural racism as an East Asian person, but for precisely the same reason, I am also part of the many Asian American communities so frequently used in service of white supremacy. Asians like me continue to be offered the illusions of respectability and equality in the white supremacist system so long as we disavow and dissociate from Black, Brown, and Indigenous people. Racial justice demands solidarity -- recognizing that we must support and work alongside the Black, Brown, and Indigenous led movements fighting against the most overt and widespread state violence.

To any disability people reading this post who think this is a distraction, or irrelevant, or somehow losing a focus on disability -- stop. Stop with the single-issue politics. Disabled people of color -- and disabled Black people in particular -- don't have the luxury of pretending that we can engage with only one issue, one category of identity or experience. Our experiences with ableism are inevitably and inextricably intertwined with our experiences with racism. Racial justice IS disability justice, and disabled people of color must demand disability solidarity with Black-led movements.

To Georgetown University: Step up your game. Listen to your Black students -- my friends, my former classmates, my colleagues.  These are the moments that will mark our university's history for the next generation to come as either the institution that chose to make hollow, conciliatory gestures or the institution willing to embark on the infinitely harder path of self-examination and long-term, systemic change centered around the members of the university community most impacted by white supremacy.


Dear President DeGioia,

Georgetown University students of color, and our allies, have been watching closely this week as events unfold on college campuses around the country, from the University of Missouri, to Yale, to our own beloved Hilltop. Fueled by the momentum of the Black Lives Matter movement on the streets of Ferguson, Baltimore, New York City, and more, Black students are demanding action to ensure that systemic racism is addressed in all its forms, including within institutions of higher learning. This is undoubtedly a critical time for racial justice, and well past time for the Georgetown administration to take action to support its Black students.

We are deeply moved by this powerful Black-led student movement. Black students, and other students of color, deserve to feel safe at their place of learning. Moreover, Black students should not have to choose between their education and their physical, mental, and emotional safety. As the recent situation at the University of Missouri has demonstrated, Black students continue to bear this burden, often in the absence of support from their universities.

We urge you to support the Black-led student mobilization on our campus, and to take action ensuring that the demands of these students are heard, honored, and heeded. This is an opportunity to renew Georgetown’s commitment to cura personalis, and we hope you will seize it.


Lydia Brown (COL 2015)


This is the text of the demands letter from the #BuiltOn272 movement ongoing now (the image at link below is not text-accessible):

(Letter visible at this Tweet.)

The broadcast from the president's office that was sent out earlier in the year ended with the statement; "This is what we do best as a university community: we come together to confront difficult events, learn from and with one another, and rely on the collective wisdom and resources of our extraordinary community to determine how we may best move forward toward justice and truth." The best way to move forward towards justice and truth is to take the demands set forth in this letter and implement them in an expedited and transparent manner.

1. Changing the name of Mulledy Hall, the Meditation Center, and McSherry Hall to reflect, center and honor the 272 enslaved Africans who were sold in the transaction and the countless people enslaved to the Jesuits prior to the transaction. We recommend that this can be completed by renaming Mulledy as "Building 272" and the remaining halls after any of the persons who were sold.

2. Plaques placed on all known unmarked graves on Georgetown University's campus honoring the legacy of enslaved people who contributed greatly to this campus.

3. Implement an Annual Program that honors the legacy of the enslaved people that continues to educate the Georgetown Community about the role and legacy slavery played in the creation and advancement of this University.

4. Revision of Official Georgetown Tours to include information about the sites and the history of the sites.

5. Endowment for the recruitment of Black identifying professors equivalent to the Net Present Value of the profit generated from the transaction in which 272 people were sold into bondage.

6. Mandatory training for all professors on how to engage and address issues of identity and diversity in their classrooms.

07 November 2015

#TheAbleistScript (The Original Tweets)

Content/TW: Institutionalization, sexual violence, gaslighting, other discussions of violence.

Graphic that says #TheAbleistScript

On Friday, I was fed up and pissed off at the everyday, casual ableism endemic to everything from pop culture and fandom to exchanges with total strangers and things that have happened to my friends and me. So I started tweeting under #TheAbleistScript -- both verbatim things people have said and paraphrases of what they're essentially saying. Then a massive shitton of fellow disabled folks picked up the hashtag and began joining in, which is awesome, but also meant I lost a lot of my own tweets (because Twitter can be really hard to navigate for me, for cognitive access reasons). So I've put up the original tweets that I put out here.

Follow the entire hashtag and some truly fabulous contributions here!

Follow the entire hashtag and some truly fabulous contributions here!

13 October 2015

Court Hearing on JRC - October 26!

Content/TW: Fairly descriptive discussion of torture and abuse of people with disabilities using electric shock in an institution.

There is a court hearing about the Judge Rotenberg Center (JRC) scheduled to begin on Monday, October 26 in the Bristol County Probate & Family Court in Taunton, Massachusetts. Arguments are expected to continue for around a month. If you are able to attend part or all of the hearing, which is open to the public, please do so! We need advocates in the courtroom! 

(This post is an explanation of why this is important, what the hearing is actually about, and for the uninitiated, what the JRC is. It starts with some background about the JRC, then gives the legal context.)

Photo: Disability and youth rights advocates protesting aversive electric shock "treatment" outside the U.S. Food and Drug Administration (FDA) in Silver Spring, Maryland in January 2013. Hand-drawn signs have slogans "No compromise on torture," "people not experiments," "Ban the GED" with a list of minor infractions shocks are used to punish, "stop the shocks," "disability rights are human rights," and "torture not treatment." From left to right: Diane Engster, Lydia Brown, Shain M. Neumeier, Kathleen N. O'Neal, and Patrick T. Ayers. Photo by Taylor C. Hall, T.C. Hall Media.


The Judge Rotenberg Center was originally founded as the Behavior Research Institute. It didn't start shocking people (as it is now infamous for doing) until 1988, but since its beginning in 1971, founder Matthew Israel instituted a regime of pain to coerce behavioral modification for the children, youth, and adults with intellectual, developmental, and psych disabilities committed to his "care." Food deprivation. Prolonged restraint. Seclusion -- which is ultimately a form of solitary confinement in the name of "treatment." Forced inhalation of ammonia. Sensory assault with the notorious white noise-blasting helmet. Slaps. Pinches designed to maximize pain by digging nails into muscle. Since 1971, six people receiving "treatment" at BRI/JRC have died in their care -- Robert Cooper (d. 1980), Danny Aswad (d. 1981), Vincent Milletich (d. 1985), Silverio Gonzalez (d. 1998), Linda Cornelison (d. 1990), and Abigail Gibson (d. 1997).

Brandon Sanchez was the first resident to be subjected to electric shock. The device was called the SIBIS -- self-injurious behavior inhibiting system. Although staff at BRI/JRC have long known that darkened, cool, low-stimulation environments help Brandon Sanchez self-regulate and decompress, they began to treat his extreme self-harm by shocking him under the belief that association of unwanted behavior with painful stimuli would decrease the unwanted behavior. (In other words, it's like applying dog training tactics to humans, or at least humans deemed sub-human.) On one day, he received over 5,000 shocks from the SIBIS in a single day. After that, Matthew Israel asked the SIBIS manufacturer to build a stronger device. They refused.

Matthew Israel invented his own device, the graduated electronic decelerator (GED), which emitted a stronger current and shock than the SIBIS. The GED works by strapping electrodes on a person's arms, torso, and legs, which are activated when someone presses a button on a remote control. Over the past couple decades, the GED has gone through several iterations, each more powerful and painful than before. The present model in use, the GED-4, is designed to be more powerful and painful than a police taser.

Theoretically, the "therapy" is used to reduce or eliminate dangerous or aggressive behavior -- like someone picking at their eyes and causing a vision disability, or someone banging their head against a wall and causing a brain injury, or someone physically attacking other people. In reality, the aversive electric shocks are given for behavior ranging from closing eyes while walking in the hallway to trying to hold a staff person's hand, or from getting out of seat without permission to using swear words, or simply for non-compliance.

In April 2012, a medical malpractice lawsuit brought by the family of Andre McCollins went to trial before a jury, where video footage of the shocks was played in public for the first time (photosensitive epilepsy warning -- video flickers / also graphic footage of torture at this link). Ten years before, in 2002, Andre McCollins, a black autistic teenager with other cognitive and psych disabilities, had been shocked 31 times in 7 hours while restrained face-down in four-point restraints. The long shock session stemmed from a brief verbal interaction with a staff person who told him to take off his jacket, and he dared to say, "No." The shocks are as much for "non-compliance" as they are for anything else.

Since 1971, dedicated advocates including titans like Nancy Weiss, Fredda Brown, and Polyxane S. Cobb have fought to close the JRC and end their abusive practices. Survivors like Jennifer Msumba and Ian Cook testified in front of the U.S. Food and Drug Administration. Disability rights organizations across the country have repeatedly condemned the JRC, along with the current and immediately former U.N. Special Rapporteurs on Torture. But legislation has never made it through the Massachusetts State House. Congress has never passed any measure that would ban aversives and dangerous restraints and seclusion. The U.S. Department of Justice civil rights investigation has produced no fruitful results. The FDA has never issued a decision after hosting a public hearing about the possibility of banning electric shock aversives.

And Massachusetts' regulatory agencies (Department of Developmental Services -- formerly Department of Mental Retardation, Office of Children and Families, etc.) have been almost totally unable to do anything about the JRC because of the Massachusetts courts.

(This explanation continues below the pictures.)

Further reading:

Photo [top]: Judge Rotenberg Center employee Joe Andrade adjusting the strap with shock electrodes on  Andrew Goldberg's ankle. (Andrew Goldberg was named as a resident with developmental disabilities in the Concord Monitor.) Photo by Charles Krupa, 2014.

Photo [bottom]: A Judge Rotenberg Center employee supervising a young student, who looks afraid, at a computer station. The employee's belt has at least four GED remote control activators hanging from it, each with a student's picture. Photo by Larry Sultan, 2007. 

Legal Context

In 1986, the Massachusetts Office of Children and Families tried to yank BRI's license to operate while issuing emergency orders essentially telling BRI to get its act together. In response, BRI sued the state government, accusing it of acting in bad faith and abusing its power to regulate by targeting just this one institution, and thereby violating the "rights" of students and parents for them to receive "treatment" at the BRI.

The case settled with a consent decree in 1987, which means that the court where the lawsuit was filed (Bristol County Probate and Family Court, as mentioned above) still has control of the case (as opposed to it being considered totally closed at the base court level). The consent decree was supposed to last for one year. It allowed BRI to keep operating as usual, but with one change -- if BRI wanted to subject anyone to invasive aversive treatments, it had to go to court and ask a judge to allow them to add the aversive treatments to the person's individual treatment plan. These special hearings are called "substituted judgment" proceedings, where the judge makes a decision about treatment based on what they think a disabled person would decide if they were "competent." (It's an incredibly ableist legal construct, but that's a topic for a whole other post.) In theory, those substituted judgment proceedings are supposed to be adversarial, meaning that the outcome could go either way -- maybe shock is added to the treatment plan, maybe not. In reality, since the institution of the consent decree, the judges in Bristol County Probate and Family Court have basically rubber stamped every BRI/JRC request to add electric shock to someone's treatment plan.

The consent decree was indefinitely extended, instead of ending in one year, and is still in force.

(BRI changed its name to Judge Rotenberg Center to honor the judge who oversaw the consent decree, once he died and it no longer looked totally weird to name the place after him.)

In the mid-1990's, the Department of Mental Retardation (now Department of Developmental Services) denied JRC's request for certification to use certain aversives, including the electric shock. So JRC went to court, and DMR was held in contempt. The commissioner was forced to resign. DMR was placed into "receivership," with an outside person appointed by the court to take over everything DMR did involving the JRC -- for ten years (1996 - 2006).

On 14 February 2013, the Massachusetts Attorney General's office filed a motion to vacate the 1987 consent decree -- if granted, the motion means that everything in the consent decree now becomes null and void, and the Bristol County Probate and Family Court will no longer have control of the case. The court also has the option of allowing the motion in part, but not in whole. Overall, this means that there is decent possibility that JRC could lose the protection it has enjoyed for almost three decades from the courts.

The hearing scheduled to begin on October 26 is an evidentiary hearing on the motion. The state attorneys will present evidence in support of their motion to vacate, probably by arguing that the consent decree is irrelevant both a) in regard to how the state's agencies regulate JRC, and b) what treatments are considered acceptable for people with intellectual, developmental, and psych disabilities. JRC's attorneys will of course argue the opposite. (Ugh, them.)

So if you live anywhere near Taunton or can get there, consider going to the hearing!

25 September 2015

Renewed Call for Submissions: Anthology by Autistic People of Color

Photo: Lydia Brown reading a section of Frederick Douglass' speech "What to the Slave is the Fourth of July?" at Boston's annual communal reading in July 2015. Photo by Pamela J. Coveney.

To our friends, our comrades in the struggle, our supporters, our beautiful community of autistic and other neurodivergent, sick, and disabled folks, 

Last summer, we reached out to you about an ambitious new anthology to gather and center the voices of autistic people of color for the first time in a print collection celebrating our authenticity, power, and struggles. (Our working anthology title is All the Weight of Our Dreams: On Living Racialized Autism.)

A year later, we have collected several dozen submissions, and are about to go into the first round of editing. 

We're calling on you for your support in getting the word out about submissions!  

If you or someone you know identifies as both autistic and a person of color -- especially if you identify as Black or Indigenous (or both) -- we invite you to submit your writing in any style or genre and on any topic for the anthology. (You count as autistic whether you are self-identified or medically diagnosed, and you count as a person of color if you don't consider yourself white.)

We welcome nonfiction, advocacy pieces, personal essay, memoir, short fiction, poetry, and artwork submissions. (If you submit any artwork, you must also submit a text-only caption/description along with your art.) We invite pieces that highlight the intersection of autism and race, but will also happily consider pieces that do not explicitly focus on this intersection.

Check out our details and guidelines about submissions, and send as many pieces as you like to Lydia Brown at lydia@autistichoya.com

(You can publish under any name you want for any reason, and you don't have to tell us those reasons.)

We are especially interested in submissions from autistic people of color who live outside the United States or who are otherwise multiply marginalized. Autistic people of color of any age can submit work. 

The deadline for this second round of submissions is 15 November 2015. 

Please share this information across your all of your networks! 

In solidarity,

Lydia Brown * Elesia Ashkenazy * Morénike Giwa-Onaiwu

Project Team


Here is some slightly updated information from the original call for submissions: 


A collection of things written by autistic people of color talking about their lives, experiences, ideas, work, or other stories. The project will become a book available in different formats. Lydia Brown is the lead editor for the anthology, which will be published through the Autism Women’s Network.


Anyone who self-identifies as 

1. Autistic 
(with or without a formal diagnosis, includes PDD-NOS and Asperger's, and perhaps NLD/NVLD)

2. Person of color, racialized, or non-white

Specifically, you might consider yourself one or more of the following:
  • Transethnic, transracial, or transnational adoptee of color
  • Mixed race, biracial, or multiracial
  • Migrant
  • Indigenous, Native, Aboriginal, or First Peoples
  • Black, Caribbean, African, or African 
  • Jewish, non-white
  • Hapa
  • East Asian, Southeast Asian, or Pacific Islander
  • South Asian, Desi, Central Asian, or Middle Eastern
  • Brown
  • Latin@, Hispanic, or Latin American
You can be *any age* and live in *any country.* 


Anything that you write or have already written. Your submission can be short or long, prose or poetry, formal or informal, academic or personal. Some possible formats include personal essays, creative non-fiction, poetry, blog posts, speeches, and academic writing. You may also submit more than one thing. 

Some suggested topics (but you don't have to choose from this list):
  • Living at the intersection of disability and race
  • Cultural and community spaces for disabled people of color
  • Passing as white or neurotypical
  • Conceptualizing disability in non-white communities
  • Intersectional social justice for disabled people of color
  • Police brutality and profiling of disabled people of color, and state violence
  • Intimacy, kinship, chosen family, romance, and sexuality
  • Education
  • Employment
  • Housing
  • Disability services
  • Healthcare
  • Activism and advocacy
  • Further marginalized experiences (i.e., also being queer, migrant, trans*, poor, multiple-disabled, etc.)
  • Representation and visibility
  • Voice, silencing, erasure
  • Socialization, communication
  • Interdependence, healing, trauma
  • Violence and abuse
  • Resilience, power, reclamation, and solidarity

If you want more specific guidelines or concrete rules about submissions, contact Lydia Brown at lydia@autistichoya.com

* Note: If it was published somewhere else, you need to have the legal right to submit it here. 


If we choose your submission, we will use whatever name you want to appear. You can also submit one or more pieces that you would like to use your usual name on, and one or more pieces that you would like to use a different name on.


Email your writing to Lydia Brown at lydia@autistichoya.com. Submissions can be attachments or in the email. 

13 July 2015

How Not to Plan Disability Conferences

How Not to Plan Disability Conferences
(or, how to be an ableist asswipe while planning a disability conference)

1. Form a planning committee without any actually disabled people on it. You’re parents/researchers/professors/professionals. You know what you’re doing, and you can do it without letting those pesky little personal biases get in the way. 

2. Alternatively, form a planning committee with your one token disabled person, so you can honestly say that, well, there was a person with a disability in the room. You have to remember all those overly-sensitive people with disabilities who’ll start hyperventilating about “inclusion” if you don’t do the politically correct thing. Bonus points if you get a token disabled person who already believes you are the Experts God Put On Earth on disability.

3. Produce an initial list of speakers/presenters without any actually disabled people on it. Don’t worry, you already know who all of the experts are on the conference themes/topics/strands. It just so happens that none of them are disabled. But hey, it’s the loving (non-disabled) family members, the dedicated (non-disabled) researchers and professionals, the prominent (non-disabled) professors who’ve done so much work for so many years to improve the lives of people with disabilities. They should be grateful you care so much. 

4. Ignore the list of disabled people with relevant expertise on the conference’s themes/topics/strands that the token disabled person provides. You don’t know most of those people, and even if the token disabled person does, they must not be very important or accomplished because you would have heard of them if they really were. Besides, you’ve already pretty much decided who the speakers will be. You just have to make the token disabled person feel like someone listened to their opinion before you proceed. 

5. Insist that none of the disabled people suggested should be presenters because “They’re not like my child/client/student!” (otherwise known as “They’re high-functioning!”) After all, if someone is capable of presenting at a conference, they must obviously have very mild disabilities—who knows, maybe they’re even so close to normal no one would ever consider them really disabled. 

6. Make sure you mention the one or two disabled people on the list who you actually know. Discredit their qualifications to speak on the conference themes/topics/strands. 

7. Relegate disabled speakers to the “inspirational personal story” presentation. You should ignore any of their interest or ability to speak about public policy, best practices, recent research developments, advocacy strategies, theory, etc.

8. You can also consider having disabled people co-present alongside non-disabled experts. You know, to provide a personal anecdote as a way of legitimizing the non-disabled main presenter’s expertise. 

9. Constantly remind everyone, especially the token disabled person, that you have a very limited budget, and can’t afford to bring in any speakers from outside the local area where the conference is happening. Then insist on bringing in one of the non-disabled presenters who lives so many states away it’s definitely a long-distance trip. 

10. Dismiss one of the disabled speaker suggestions because you had to pay them a lot of money the last time you asked them to speak. Obviously any other disabled person asking for money is clearly asking for an unreasonable and impossible amount. Besides, it’s not like they need that much money. Don’t they have families to mooch off of and SSDI to collect or something?

11. Create a list of target audiences for your conference that doesn’t even include people with disabilities as a target audience. Reluctantly add them in later under “families.” Some of those more high-functioning people with disabilities might show up. And of course, some families will have to bring their lower-functioning relatives with them, but it’s not like they’d be listening or anything. 

12. Remember to keep telling your token disabled person that they are very high-functioning and don’t know what it’s like to have severe disabilities. Emphasize this especially whenever the token disabled person tries to get the rest of the committee to bring in actually disabled speakers. Don’t forget—anyone the token disabled person suggests must also be very high-functioning if they could theoretically present at a conference.

13. Repeatedly tell the token disabled person that they’re not listening to what anyone else is saying. It doesn’t matter that they’ve barely been given any time to speak and have mostly been ignored. The fact that they keep harping about more speakers with disabilities (eye roll) is just more evidence that they’re. not. listening. to. you.

14. If you have to include disabled speakers/presenters, make sure your token disabled person at least gets the comfort of a consolation prize. (See #7 and #8.) Don’t worry. It’s for the best.

15. If you post information about your conference online, make sure to only list the name of the non-disabled main presenters for any presentation where you have so kindly thought to include one or more disabled speakers to provide their "personal perspective" as a self-narrating zoo exhibit for you. This makes total sense, of course, since the disabled speakers aren't presenting the main ideas or concepts or research. They're just there to illustrate your fantastic non-disabled expert's points.

16. Remember. You’re being perfectly reasonable. Any possible complaints are unfounded accusations riddled with personal bias, irrational thinking, and emotionally volatile lack of perspective. You have done everything you possibly could. At this point, if you have to just go ahead and make your final decisions without the token disabled person on board with it, you just have to do it. They’re just the token, in the end. It’s not like they’re important or anything, and it’s definitely not like their opinion was actually going to change the outcome anyway. 


This is a red rageface sketch. Why? Because THIS SHIT FILLS ME WITH RAGE WHEN IT HAPPENS. Which is often.



Seriously, don't do any of these things. If you or someone you know is doing one of those things, stop!


1. If you realize that everyone invited so far is not disabled, or everyone on your list of possible speakers is not disabled, ask some actually disabled people -- not just one -- who they think should be invited to the conference. If you're asking disabled people who are *in touch with* disability activism or advocacy or anything disability-related, we definitely know people with disabilities you could invite.

2. It's fine to have parameters by necessity -- for example, you have a small budget so you can only invite speakers who live nearby, or you need someone to be able to talk about specific types of issues -- but don't use these parameters to exclude disabled speakers. Again, if you're asking disabled people who are in touch with the movement, we either know disabled people within your parameters or we know people who will.

3. Don't make exceptions to your financial/compensation/geographic parameters for one or more non-disabled speakers while denying the disabled speakers a) an honorarium, b) travel expenses for out-of-state, c) travel expenses for local travel, d) lodging expenses/arrangements, e) per diem costs, f) any other arrangements that you're paying for. If you catch someone doing this, ask why you are prioritizing a non-disabled person (no matter how awesome they or their work are) over a disabled person.

4. Rethink who is on the planning committee. Don't invite people as tokens -- actually talk to disabled people who you know and ask them to take a substantive leadership role in the planning of your conference. More than one. More than two. And yes, expect some of us to decline because of time, energy, spoons, or other limitations on our ability to engage. So ask several of us. When there are disabled people, and not just one or a handful (proportionate to the total number of people in the room), involved in the planning, a lot of these issues will be avoided.

5. Change the wording on any publicity materials to mention that YES, disabled people are an expected constituency. People with disabilities should always be expected in the audience of anything related to disability, even and especially if the material is geared more toward "parents" or "professionals." Why? Because a.) some of us are part of those groups also, and b.) we have the most valuable possible perspective to give to non-disabled parents, professionals, or what-have-you, since we live every day the things you will be talking about.

6. Another good way to acknowledge and affirm -- and thereby make your conference infinitely more welcoming and inclusive -- that disabled people may want to be present at your thing is to include easily findable information about access and accommodations.

Be up front if you won't have ASL interpretation. It's shitty if you don't but can, less shitty but still in the shitty category if you don't because you can't, but it's always even more shitty if you're not even able to be up front about it and leave d/Deaf and hard-of-hearing potential attendees wondering and forced to ask (which many won't do because they're used to being told no, which sucks for obvious reasons). If on the off-chance you actually WILL have ASL interpretation, please plaster that information everywhere. I mean everywhere.

In the same part of your site or other materials on access/accommodations, make sure to describe whether there is adequate wheelchair/mobility access. Establish a low-fragrance policy. Establish a no flash photography -- and no photography of any kind without consent of those in the picture -- policy. Mention if there will be a break room where attendees can take a break from the stimulation. (Seriously, that's not just autistics; it's also people with anxiety, people with physical disabilities or chronic pain, people with depression, etc. etc. etc.) These are all little things that you can do for minimal cost, and that advertising and talking about publicly can send a strong message that you're expecting and trying to be as welcoming as possible for disabled people.

* (On the minimal cost note, yes, ASL interpretation or CART captioning are expensive, and because interpreters and captioners need to eat too. That's why it is a shitty situation if you can't have ASL interpretation or CART captioning, but because of our current capitalistic system, if you don't have enough money, it's just not a thing that can happen.)

7. When you ask disabled people to speak at your conference, be up front that they are welcome to share personal stories or their individual perspective based on their specific life experiences/childhood/etc. if they want to do so, either as the main presentation (if it's open topic and presenter gets to decide) or as backdrop/details, but that you are NOT EXPECTING a self-narrating zoo exhibit / in-person inspiration porn / a token self-advocate to make the non-disabled people feel good about themselves. In fact, if you're inviting disabled people to talk about anything beyond merely themselves (whether or not they also include information and stories about themselves in the presentation), like public policy, research, activism, or advocacy, you should say that in the invite. Like, "Hey, we know you've done a lot of work on employment issues affecting people with disabilities. Like, you've won awards, worked for orgs, and spent years advocating for better employment supports and shit. Since you're such a fantastic advocate and your work is super important, it would be awesome if you came to speak at our conference in [some place] on [some date] about employment and disability issues!"

There are more professional ways to convey this sentiment than this wording, but hey, if it suits you, feel free to snag it verbatim from here.

8. Listen to what disabled people have to say. Seriously. It's not that hard, but people make it out to be. If someone disabled in your planning group can talk or go to college or has a job or can help plan a conference, don't use that fact to say, "Oh well you know, you're very high-functioning/mild/etc., so you really don't get it." That's shitty. It's ableist. It's invalidating, dismissive, and demeaning. It's also incredibly arrogant. Does someone who went to college know what it's like to not be able to go to college? Well, obviously, no. But someone who has ANY kind of disability, no matter how specifically they are impacted or what specific skills they have or lack, is going to have a better grasp of what it's like to be disabled in ways that have really significant impact on life than you as a non-disabled person. (Here's an excellent blog post about precisely this topic written by someone who does have more impairments than me in a lot of ways, so go read theirs.)

9. Speak up if someone else in your planning group is saying or doing these shitty things. If they're saying them in front of the whole group, and you know they're wrong, and you have the ability to speak out, then do. That's called practicing good allyship. Because if disabled people aren't in the room to begin with, then all we can hope for is someone who's in there to say something. Or if we're in the room, but we're being constantly shouted down or talked over or talked down to in those patronizing voices, it's actually really nice for a change to have someone who will be taken more seriously (i.e. someone not disabled) speak up for us and say, "Yeah, actually, [disabled person here] is right. This is not okay."

10. If someone is objecting to someone presenting because "well they're too high-functioning" and you're supposed to be talking about people who "could never present at a conference," think about these two things: a) a lot of non-disabled, neurotypical people can't present at conferences, because it's just not in their skillset. b) if you're thinking there are people whose disabilities would mean they couldn't comfortably be in a conference space, please start questioning whether i) you mean their behavior (like, humming, or pacing, or flapping, or rocking, or sitting on the floor, or something) would make you uncomfortable and therefore be inconvenient to the non-disabled people in the room or ii) you can rethink how you are designing the whole conference (length and number of breaks, expectations for behavior/seating arrangement during sessions, lighting -- natural or artificial, availability of food/drinks, etc.) so the space would actually be more inclusive for more types of people.

11. Don't conflate disabled people into the families category. A lot of us ARE also parents of disabled kids, or siblings of other disabled people, or spouses or partners of other disabled people, etc. etc., but if by "families" you typically mean "non-disabled family members of someone with a disability," you don't get to lump us in as a subcategory. List us separately. It's totally okay (and I encourage you) to acknowledge that parents/spouses/siblings/etc. can also be disabled themselves, but the category of "disabled people/PWD's" needs to exist on its own as well. This should be common sense if the conference is about disability, but apparently it isn't.

12. If you're offering an honorarium to non-disabled speakers, offer the same honorarium to disabled speakers. Doing otherwise shows that you value the labor of non-disabled people, but don't believe that the labor of disabled people is worth paying us for. That's shitty.

13. Don't have the disabled person/people in the planning group only be responsible for planning a single in-the-back or niche session where disabled people will be presenting. That's just as tokenizing and othering as not having any disabled speakers at all. Strive to include disabled speakers throughout your event, not just at one small part of it.

14. And include the disabled people in the planning group in all parts of the planning, with equal responsibility and decision-making power as everyone else, for all other parts of the conference. If they're not speaking up, explicitly ask/invite them to share their thoughts, and give extra time for them to respond. Give the option of responding by phone or over email or some other medium that's not in-person if the in-person meetings aren't eliciting many comments from them. Create multiple modes of access and participation.

Soooo that afterword turned into almost an entirely separate list on its own. I would apologize for that, but I'm not actually sorry. Pass this one around, because these kinds of conferences, symposia, workshops, training sessions, etc. are planned all the time and way more of the time than not, there are no disabled people involved in planning, there are no disabled speakers, or if there are disabled speakers, they're expected to fulfill the role of self-narrating zoo exhibit / inspiration porn and absolutely nothing else whatsoever. Since a lot of you reading this will at some point have the opportunity to push back against these harmful practices, it's especially important that you do so. We don't want tokenism. We want real representation.