Transcript of video excerpt from panel “Intersectionality for Beginners” at Women of the World Festival 2017, featuring keynote from Lydia X. Z. Brown and panel of Guppi Bola, Kuchenga Shenje, Eleanor Lisney, and Emma Dabiri, chaired by Hannah Azieb Poole.
Note they cut out the parts of my keynote where I named and honored many of the amazing disabled activists, organizers, and advocates who I learn from, but among those were Kay Ulanday Barrett, Leroy F. Moore, Jr., Nai Damato, Talila A. Lewis, Mia Mingus, and Shain M. Neumeier, all of whom are awesome human beings.
Transcript by Lydia X. Z. Brown
LYDIA: The work that I do is rooted in a practice of disability justice. Disability Justice is an imperative of intersectionality. Disability Justice is the art and practice of honoring the body. Intersectionality, as coined and intended by the Black feminist and womanist scholar-activist Kimberle Crenshaw, is the deliberate thought and practice of understanding that oppression comes in multiple forms that do not simply add together one plus one as though you can check them off from a box, but rather inform one another, creating new and particular experiences of oppression that cannot be easily conceptualized by linear narratives. This is oppression that, for many of us, we live in our bodies.
I ask us to tune in to our bodies, because to honor the body means not just the abstract or the theory. We have invited certain people to this room; we respect certain people; we attempt to use inclusive language — whatever the hell that means. But it also means the art of honoring the bodies that we occupy, allowing ourselves to exist and to take up space. To affirm that those who are the most vulnerable, the most traumatized, the most impacted, are valuable and valid and magnificent and beautiful.
The work that I do is informed constantly by the labor, by the active love, by the fire and the resistance of my comrades and my colleagues. We do not do this work alone. To do work intersectionally means not only to acknowledge superficially that we each have different identities and experiences, and that the whole of those make us who we are, but rather to honor the full complexity of each and every one of us. There are untold numbers of people doing this work, often not recognized, often expected to give untold amounts of free labor for everybody around them, often not named, often isolated and disconnected even if visible, even if known. Disability Justice calls us not just to acknowledge somebody’s existence, but to work to create activist communities and movements that fight isolation, that recognize isolation as a form of abuse and violence, that recognize that honoring the whole humanity of everyone is indispensable and is vital. In a world of justice, in a world of active love, in a world where the whole humanity of everyone is honored and valued and treasured. This is Disability Justice.
GUPPI: The work that I do is ultimately supporting organizations and NGO’s who are trying to do social justice work but are doing it exceptionally badly. So are hurting people, and are putting the wrong people in the front of the movements, taking up space, putting resources in the wrong places, and I’m just trying to challenge them. So I try to do that publicly and privately, and then make space for the activists on the ground who are doing the really great work and who have the right stories to tell, and have really do, and really bringing intersectionality into their activism, which is a kind of strange role to play.
But I now realize that as someone who has quite an incredible amount of power in the social justice organizing space, I want to be using that power well. And so I guess, as I said earlier, as the “nervous white woman on the panel”, as kind of a term I’ve used for many people that I’ve met over the last few years in activism, and nervousness really freezes you, but I’m trying to support those to get out their nervousness and actually do something, but also do the right thing when it comes to leading the social justice activism.
KUCHENGA: As trans women, we’re victims of state violence, interpersonal violence, sexual and domestic violence, socially sanctioned violence. And I had a moment during Lydia’s amazing speech where I was stilled by that fact, that for me as a transwoman of color to desire a long, healthy life full of meaning is asking too much. I feel so powerful to be sitting up here as a thirty-one year old transwoman having gone through all of the things I’ve gone through, and a little too exceptional. And, you know, I’ve been very honored to be part of movements that are living and breathing intersectionality, that being Black Lives Matter UK, the work of Sisters Uncut has been, yeah, it’s been incredible. I’m also, I’m a member of the Bent Bars Collective that writes to LGBT people in prisons.
And I think, I am so grateful to the work of Black feminists who are alerting me that another world is possible. Angela Davis speaking later, yeah, her work talking about the prison-industrial complex and looking at these issues in a macro sense. But I’m also aware of what’s taking place in our national media. I’ve been so discouraged by frightening, fractious contributions of Jenni Murray and Germaine Greer, who I feel, with their biological determinism, they’re really working against transwomen being able to stand in solidarity with all women. You know, we’re really, yeah, it’s just, it’s really weird to feel so betrayed on a regular basis, particularly when we’re going through so much. So yeah, as bell hooks [unintelligible] told us, feminism really is for everybody. And as we move forward, let’s make sure that no woman is left behind.
ELEANOR: I know so many disabled people and women who have said, because of the cuts in this country, that they can’t protest the way that, you know, that we’ve seen so many marches and so many demos. And they said, because there are, because of their mobility issues or mental health issues or other issues, they can’t be part of that demonstration even though it means a lot for them to be there.
I’m so glad that Lydia talked about all those who are also activists, activists in the active pursuit of existence. For me, they’re the heroes. They’re the ones who have to fight. They’re the ones who are getting targeted by our Department of Work and Pensions who says that they don’t deserve to live. Basically, that’s what it means.
EMMA: Some, some argue that intersectionality has been mainstreamed in the past two decades, and it’s become a way to manage difference that actually colludes with dominant forms of liberal multiculturalism. I can say I’m a Black woman, and as a result of that, I’m particularly marginalized. There are marginalizations that I experience, but there are also privileges I experience.
I was, when we think about generative justice, which I’m going to explain to you in a moment, which is kind of a — when I, when I critique capitalism, people are always just like, ooh, knee-jerk reaction, “Communism doesn’t work.” I’m like, I’m not talking about communism; I’m not a communist. There are other options, generative justice being one, come to, in a moment. But I was thinking about the exploitation that exists within capitalism, and even me, with my intersectional positioning, look at my nails — the exploitation that went into them being made. Look at my iPad; look at our iPhones — the coltan that goes into our iPads, the coltan that goes into our mobile phones, fueling this terrible war in the Congo that’s affecting other women. We are, within capitalism, we are all complicit in forms of oppression, regard — of exploitation, regardless of how intersectional our individual experiences are. And that is, that is problematic.
So to me, intersectionality is part of a journey to a more just society, but it is not in and of itself, the end goal. In lots of communities in pre-colonial Africa and across the Americas, some, not all, but some Indigenous peoples, many of them practiced a gift economy. So rather than an economy that’s based on the accumulation of wealth for a small elite, society operates according to a gift economy. Rather than industrial extraction which leads to all of those forms of exploitation that I’ve spoken about (the coltan in the phone, the nails, there’s so many I can think of, I was just thinking of ones that are personal to me in this moment). So rather than industrial extraction, Indigenous societies circulated value in unalienated form through meaningful and collaborative exchange with both human and non-human (that’s the environment and animals), meaningful, collaborative exchange with both human and non-human partners.
So to finish, it’s not a question of balancing some gains for one or two particular marginalized groups within our continually exploitative society, but it’s really about shifting the operating logic on which our society operates. The flourishing of unalienated creation of value will mean social justice for all. This should be our end goal. Intersectionality can be part of the journey forwards in this direction, but we have to dream bigger and beyond.
On 27 January 2008, Autism Speaks co-founder Suzanne Wright (d. 2016) published a short editorial in Parade titled “Autism Changes Everything.” That op-ed has been repeatedly cited by autistic people and others critically examining rhetoric about autism in the public sphere, but it has disappeared from Parade‘s website, and so far (as of August 2016), you have to go back to several year old captures in the Wayback Machine to find its text. They’re doing a good job of trying to make it disappear from the internet. (But the internet remembers forever.)
Here is the text of that awful piece, preserved for posterity (meaning, so current and future advocates can have it as a piece of evidence in the rhetorical war on autism — and by extension, on autistic people), so we don’t forget or lose records of the things they’ve said about us:
AUTISM CHANGES EVERYTHING
[Photo: Suzanne Wright and her grandson, Christian.]
My grandson Christian and I used to sit by the side of the road together and talk about the different vehicles as they passed. He loved to name them all—mail truck, delivery truck, garbage truck. Our home videos, now too painful to watch, show a happy little boy reveling in the new role of big brother.
A few months later, this bright, beautiful child was somehow slipping away from us. His words left him, and his playful personality gave way to frequent and intense tantrums. His potty training disappeared. He began to suffer from gastrointestinal problems and recurring infections. The sensation of sand under his feet now made a walk on the beach feel like torture. Autism had its grip on Christian, and it was taking hold of our entire family in the process.
For a while, we mourned the loss of the little boy we knew and all we hoped he would become someday. And then we got back to loving and celebrating the wonderful child he is and how much he has to offer.
My husband Bob [vice chairman of General Electric] and I simply could not fathom why so little was known about a disorder that was devastating thousands of families like ours. Where were the impassioned speeches on the floors of Congress? Why hadn’t anyone told us this could happen to our grandchild—to anyone’s child?
Some may view autism as the disease du jour, the cause of the moment. That trivializes what many are enduring. Families are literally going broke trying to provide their children with the services they deserve. Adults with autism are failing to meet their potential.
Our grief evolved into feelings of anger and, eventually, determination. We started a foundation called Autism Speaks and, working with thousands of remarkable parents, have brought this issue front and center. With the help of the United Nations, we are taking this effort global. This year, April 2 will be World Autism Awareness Day.
We’re now playing catch-up as we try to stem the tide and ultimately eradicate autism for the sake of future generations. If we continue our current trajectory, we’ll get there in my lifetime.
Original URL: http://www.parade.com/articles/editions/2008/edition_01-27-2008/Autism_Changes_Everything
In April 2014, the U.S. Food and Drug Administration held an advisory panel hearing on a potential proposed ban of aversive conditioning devices used for contingent electric shock — the Judge Rotenberg Center in Canton, Massachusetts, is the only known institution to currently use such devices for behavioral modification. Ian Cook, a survivor of the JRC who spent several years in that institution, gave testimony in person. This is the transcript of that testimony taken from the official hearing transcript.
MR. COOK: Hello. I am Ian Cook. My legal name is Hilary Cook. And thank you for having me here today. I was a student at JRC from 2006 to 2009 and was on the GED-4 for the majority of the time I was there.
The only good thing that the JRC did for me was taking me off of my medication. It turned out they were at the root of my problems. The GED, however, didn’t help me at all, on the contrary. I had been put on the GED due to my previous aggressive behavior. That said, I cannot remember a single time I was ever shocked for said behavior.
Most of my shocks were for noncompliance or disruption. In fact, I was also subject to a method known as BRLs. While I was sitting in a restraint chair, a staff would burst into my conference room — I was one-onone alone with staff — and screamed at me to hurt him holding a knife. Even though I did absolutely nothing and sat there in shock, not having any idea what was going on, I would receive a shock from the GED device. This happened a couple of times a week, at first, and left me in a constant state of fear, never knowing when I’d be hurt for no reason.
My experiences from the GED have affected me to this very day. I now suffer from a fear of authority, a fear of being controlled, and I panic when presented with either.
A side note. I was in an abusive relationship two years ago, and part of why I fell prey to it — my belief — is that JRC instilled a lesson in me that it is okay for people to hurt me so long as they are trying to correct me.
I have, to the best of my knowledge, not experienced any beneficial effects, both either short term or long term, from the effects of the GED. I would strongly suggest, based on my personal experience and my ongoing difficulties, that the FDA ban the current and future use of the device.
Thank you very much for having me.
Text-accessible transcript with image descriptions graciously provided by Jack Dunn. This article is so hugely important, and comes in the midst of very visible, national organizing under the banner of Black Lives Matter, and is especially important for anyone (Black, non-Black people of color, and white people trying to practice allyship) who is sick, disabled, low or no-income, rural, etc. and may not know how you can contribute valuably and non-shittily when much emphasis is on showing up in the streets (which is not always accessible for many reasons to many of the most marginalized people).
[image is a four page brochure. It is titled: “26 ways to be in the struggle beyond the streets”, with large black font on bright orange background. Beneath is a long list in two-column magazine formatting.
It reads: This list is designed to celebrate all the ways that our communities can engage in liberation. For a range of reasons, there are and always have been folks who cannot attend rallies and protests but who continue to contribute to ending police and state violence against black people.
People seek justice and support liberation in an array of ways, yet their bodies, their spirits, and their lives may not allow them to be in the streets. We believe that we will win. And we need the presence of everyone in the movement to do so. We affirm that all contributions are political, militant, and valued.
By and for those in our communities who can’t be in the streets, we offer a list of concrete ways that we are in the movement, and that we are supporting liberation every day. We see you. We are you. See you in the struggle.
1. Host or attend a Know Your Rights Training to educate yourself, your loved ones, and your community on their rights when interacting with the police. Here are a few organizations, mostly
in New York City, that host these trainings and/or have resources available on their website you can download and use:
▶▶ Justice Committee, justicecommittee.org
▶▶ Malcolm X Grassroots Movement, mxgm.org
▶▶ Streetwise And Safe (NYC), streetwiseandsafe.org
▶▶ FIERCE (NYC), fiercenyc.org
▶▶ CAAAV Organizing Asian Communities (NYC),
▶▶ People’s Justice (NYC), peoplesjustice.org
▶▶ Communities United for Police Reform (NYC),
▶▶ Arab Resource and Organizing Center (Bay Area),
▶▶ National Lawyers Guild (national), nlg.org
2. Fundraise online, donate business proceeds, or create events for organizations that work on police violence, police accountability, and against the criminalization of black communities. The groups listed above are a great place to start. In addition, national organizations need support, including:
▶▶ Black Lives Matter, blacklivesmatter.com
▶▶ Ferguson Action, fergusonaction.com
▶▶ Ferguson National Response Network,
▶▶ Black Youth Project 100, byp100.org
3. Spread the word on rallies, actions, events, and demands through social media, text, email, phone, and in person. Here are a few orgs and ways to plug in and share info:
▶▶ Justice League NYC has a list of demands for police accountability at gatheringforjustice.org
▶▶ Communities United for Police Reform is calling for 11 Days of Action for Eric Garner from Wednesday 12/10/14 until Sunday 12/20/14: thisstopstoday.org
▶▶ Use hashtags when sharing, and search these hashtags for more info:
4. Offer to be the emergency contact for people attending marches and rallies. Get the person’s full legal name and date of birth. Make sure to know the numbers for the National Lawyers Guild (nlg.org), Central Booking, local precincts, and local hospitals. Check in by text once an hour so that you’re aware of their whereabouts and current protest conditions. If possible, also try and know whether folks require any medications that can’t be skipped in a 24-48 hour time period.
5. Attend planning meetings or strategy calls for anti-police violence and anti-criminalization organizations. In addition to the organizations that we’re listed, here are a few anti-criminalization organizations that are great resources:
▶▶ Critical Resistance (national), criticalresistance.org
▶▶ INCITE (national), incite-national.org
6. Support or organize healing justice events. Adrienne Maree Brown, Adaku Utah, and Leah Lakshmi Piepzna-Samarasinha and Susan Raffo have created a list of healing practices to sustain care in protest here (bit.ly/13dugxA). Create space to facilitate these practices with others.
7. Cook a pre- or post-march meal or pack food for people attending protests, marches, and events.
8. Coordinate or provide childcare for people attending marches, rallies, and events. Be sure to make plans for extenuating circumstances, such as arrests. Keep in mind that it may not make sense to offer childcare support unless there’s a strong relationship between the childcare providers and the children whose parents/caregivers are marching. This is important so childcare providers can continue to support if children are separated from their parents for a longer period than expected. Try to plan for childcare to take place in a home, not at the marches/rallies themselves. This will be important should childcare providers need to make arrangements for overnight support.
9. Create and share art, music, poetry, and stories that speak on issues relating to police violence, criminalization of black communities, social justice, stories and images of resistance, solidarity, and resiliency. Create new chants, make signs, reach out to organizers to see what materials they need designed. Share and support the work of black artists and people of color who are impacted by these struggles. Cultural work is resistance!
10. Create a home base for the evening, where folks who are protesting can take physical and emotional breaks indoors with others. A home base can also be a great space to gather people working as emergency contacts or doing other types of remote support for protesters.
11. Continue to reflect on your privilege, power, and identity if you’re white or a non-black person of color. Look at the history of racism, race being used as a wedge issue (i.e. API communities), and of aspiring ally-ship or solidarity between your folks and black communities. Find like-identified folks to workshop with, and have conversations with family, friends, co-workers, and community members to help build awareness and solidarity in the service of ending anti-black racism. Utilize your online media presence to reflect black perspectives. Be a conduit on social media where black activists are speaking, engaging, agitating, and showing up. Showing up as a non-black POC or white person can mean supporting to multiply the message.
12. Be a grounding or self-care buddy: breathe with someone before they leave for the march. Help them create a post-march grounding plan. Give them regular text check-ins from your home, and friendly reminders of support to drink water, eat, ground themselves, etc. Send sweet emojis or whatever else would help the person marching, and ask that person to text you when they’re home safe from the march.
13. Offer to help create a safety plan for friends who have physical pain, varying mobilities, and/or mental health concerns and want to participate in the march. This might include:
▶▶ what they might need before and after the action(s)
▶▶ self-care boundaries such as pre-determining amount of time spent on the street
▶▶ being clear about what might help prevent or delay pain or anxiety
>> what signs to be aware of re: onset of pain or mental health challenges
▶▶making agreements ahead of time to give themselves permission to exit early upon first signs of onset
▶▶what they will do/where they will go if triggered or hurt and what will be comforting post-march that could be arranged ahead of time
14. Create intentional spiritual space. If you have a spiritual practice or practice community this is a great opportunity to come together and set an intention for your work together toward supporting the movement. That could look like opening the space up for others join you in meditation, prayer, chanting, singing, centering, Jo Kata, etc. If you have physical space where you practice, this could also include opening the doors to invite in protesters who need rest, water, food, warmth.
15. Volunteer. When organizations on the frontlines are using most of their resources to get people out on the streets, they need volunteers to provide IT support, collect supplies for demonstrations, answer phones, do data entry, upload, organize, and archive documentation. Check with organizations about volunteer opportunities and needs.
16. Work with teachers. If you’re an experienced educator, write curriculum and support other educators in talking about these issues. Host a conference call with teachers to strategize on how to talk with students about what’s happening and how they can get involved. Especially consider organizing trainings and teach-ins on the real herstory of Black Lives Matter: thefeministwire.com/2014/10/blacklivesmatter-2.
17. Share skills. If you are experienced in organizing demonstrations, facilitating trainings on community security or marshalling, being a medic, providing jail support, or being a legal observer, then host trainings, create educational documents, and support people one-on-one in building their skills. For example, if you know how to create medic or care kits for people in the streets, organize a kit-making party or use your resources to put a few together to send out with trained folks during protests.
18. Make space to process. If these are your communities, hold processing moments for black, queer, trans, and migrant community members who are unable to attend protests for any reason, but who are deeply affected and policed.
19. Hold space and/or organize events centering the experiences of black people on probation or parole to talk about their experiences of police violence and surviving state supervision, incarceration, and state violence.
20. Skype, text, visit, and show love for those who are in pain, injured in protest, and/or managing trauma from tear gas, police brutality, physical, and/or emotional violence. Follow up with the community member by affirming their needs and creating support mechanisms. Remember that state violence also impacts our spirit.
21. Help amplify the protests by circulating breaking news visuals of actions, protests, and events from those in the streets to reach a wider audience. If asked, serve as an off-site spokesperson or media contact for protests. Offer to help write advisories and media releases, if needed.
22. Translate documents, media, and support being circulated about protests to international press and other outlets if you are multilingual.
23. Support people with disabilities and multiple cognitive experience by writing captions for images to convey messages in photos and footage. This amplifies these messages and increases information sharing.
24. Attend and/or circulate events/panels that are central to black perspectives and challenging anti-black racism. Promote these events and support those around you to incorporate these issues and experiences into their own events.
25. Start conversations. Bring conversations about the importance of black lives and ending criminalization and state violence against black communities into your workplace, school, library, church, family.
26. Take care of yourself! Self-care is a revolutionary act. The criminalization of black communities, police violence against black people, and the devaluing of black lives is traumatizing. These instances and the constant deluge of information can not only cause trauma but also bring up vicarious trauma and sap our individual and collective energy to create change. Step away from the computer or the TV and take time to remember what we’re fighting for—the people we love, and take time to call community. Allowing yourself to feel, express rage, cry, and experience joy in these times is not only critical but essential.
Piper Anderson, Kay Ulanday Barrett, Ejeris Dixon,
Ro Garrido, Emi Kane, Bhavana Nancherla, Deesha
Narichania, Sabelo Narasimhan, Amir Rabiyah, and
Meejin Richart. Design by Alana Yu-lan Price.
On the inside page is a black and white photo of BLM protestors holding signs]
Content/TW: Abuse in institutions, extreme ableism, behaviorism at its absolute worst, coercive treatment.
Jennifer Msumba, a biracial autistic woman, was held in the Judge Rotenberg Center for several years. After testifying via video at the U.S. Food and Drug Administration’s advisory panel hearing in April 2014, she began to write a blog documenting her experiences at the JRC. She also spoke on an October 2014 panel (along with disabled attorneys Deepa Goraya and Shain Neumeier) at Georgetown University on disability and institutional abuse.
In June 2015, Jennifer published a page from her behavior sheet at the JRC to her blog. This is a text-accessible version of the sheet (which was shown as an image).
And here’s a handy list of abbreviations/explanations for the euphemisms and blatant duplicity:
OOS = out of seat
1 GED-4 = one shock from the GED-4
helmet = sensory assault helmet that covers your head and assaults you with awful white noise
lose points = points toward getting a reward
touch electrical items in an attempt to dismantle or defeat its use = trying to take the GED shock device off or to prevent it from shocking
GM = general monitor? not sure
HDB = health dangerous behavior(s)
U/D = urination/defecation
MDIS = maybe “manipulative, destructive, or inappropriate speech” (?)
NCMP – “non-compliance” (and manipulation? unclear)
EdSoc = educational/social
LOP = loss of privileges (basically, disciplinary status)
WATC = individualized learning software that JRC uses (I believe)
IVB = inappropriate verbal behavior
Aggress1 – 1 GED-4 (legs/waist/cross-overs/helmet for 1 hour) OOS without permission (to exclude rewarding environments and the All Purpose room) out of bed without permission (to exclude bath-ops), make verbal or written threats to aggress, aggressive posturing,: any physical aggression towards others including attempts (to include biting, hitting, punching, pulling hair, choking others), spit at others.
Destroy1 1 GED-4 (legs/waist/cross-overs/helmet 1 hour; lose all points) Property destruction to include attempts and threats (verbal or written) (to include bang objects, kick objects, throw objects), slam doors, touch electrical outlets without permission, touch electrical items in an attempt to dismantle or defeat its use.
HDB 1 1 GED-4 (Legs/waist/cross-overs/helmet 1 hour; Lose all points.) Blatant attempts to hurt self (including head bang, attempts to cut body with objects i.e. CDs, stick items in body i.e. tacks, push pins, etc. ), attempts to commit suicide (to include lying objects around neck), runaway (to include attempts), remove seatbelt without permission, attempts to remove restraints (e.g. waist, ankle, crossover, helmet), make suicidal gestures, pick fingers to cause redness and/or bleeding, violent head shakes, pick scabs, self, hit self, scratch self to cause injury, drop self to floor, verbal threats to harm self (to include comments about health dangerous behaviors or dying, such as ‘don’t bang your head’, ‘kill me’-excluding when speaking with treatment team or nursing), pressurize ears/eyes for more than 3 seconds, self-restraining for five seconds or more (e.g. forcefully wrap hands in clothing, forcefully pulling clothing into body, forcefully wrapping legs/arms around chair, and forcefully pull self into GM table), repetitive hand movements in front of face, tense up for more than 2 seconds (to include fingers), remove shoelaces/drawstrings without permission.
HDB Inap. U/D 1 GED-4 (Lose All Points) Defecate or urinate anywhere but in toilet.
MDIS1 1 GED-4 (legs/waist/cross-over/helmet 1 hour, Lose all points) Swear at others (to include nonverbally), yell, scream, steal (to include food), instruct or request others to exhibit negative behaviors, make threats or comments about breaking behavioral contracts, clear desk or table of objects forcefully, forceful jumping at inappropriate times, loud repetitive disruptive talk out, racial comments, sexual comments/gestures, expose self (to include removating clothing at inappropriate times- excluding shoes/socks).
NCMP1 1 GED-4 (legs/waist/cross-over/helmet 1 hour; lose all points, 3 step direction) Blatant NO, refuse to follow any given direction (3 step direction), attempt to remove or defeat the purpose of the GED, refuse physical prompting
MDIS2 NO Ritualistic behaviors (i.e. hesitating before passing through doorways, repetitive tapping of objects, having to touch something with both hands instead of just one, etc.)
EdSoc1 NO (point fine) Personal space violation, stop work, mimic others, rude gestures (to include sticking out her tongue), rock with appropriate stimulus, avoid eye contact, non-functional manipulation of objects for more than 5 seconds, facial grimacing, pace, take shoes off without permission, write bizarre letters/notes/etc., spit food (not at others), hand play while seated at GM, cry at inappropriate times, perform a learned task incorrectly, leaning off the side of the chair and sitting backwards in the chair BUT will exclude turning head around and also to exclude turning head around in response to a commotion or a crisis, suck thumb, negative reaction (crying, stomping, noises, comments) to change in schedule or information given to her, repeatedly rub head.
EdSoc2 NO (Lose all points) Lending/borrowing/giving/receiving of items, make medical complaints without foundation, lie, threaten/intimidate/complain/talk back concerning staff decision/pinpoint/conduct, failure to follow student rules, make/accept phone calls to/from family when on LOP, intentionally blow air on others, touching other students belongings without permission, refuse to complete task/chore or intentionally complete WATC work incorrectly, misplace/hide/leave behind restraint bag or individual restraints (i.e. leaving helmet/restraints/entire bag at the house before transport to school and vice versa), leave a supervised area (to include attempts), spit/drool/blow nose on self, run through buildings to include hallways/classrooms/residence, stand/climb on furniture, rude comments of a vicious/hurtful nature, manipulate staff, sudden tic-like body movements, any communication/interaction with [CENSORED] (including speaking to or staring at, Any rude behavior during presentations (ex: falling asleep, closing eyes, talking, rude facial expressions, etc), saying ‘hell’ or ‘damn’.
EdSoc3 NO (Lose all pts.) Refuse to eat more than 50% of meal.
IVB1 NO (Point fine) Argue with staff/student, interrupt others, nag, talkout, speak in an inappropriate tone of voice, tease others, laugh/sing at inappropriate times, bizarre speech (‘I’m going to heaven today’), comments about hearing voices/seeing things, nonsense noises, verbal repeating, talk to self, negative comments (to include to or about other students/self).
In April 2014, the U.S. Food and Drug Administration held an advisory panel hearing on a potential proposed ban of aversive conditioning devices used for contingent electric shock — the Judge Rotenberg Center in Canton, Massachusetts, is the only known institution to currently use such devices for behavioral modification. Jennifer Msumba, a biracial autistic survivor of the JRC who spent several years in that institution, gave testimony via video. This is the transcript of that testimony taken from the official hearing transcript.
MS. MSUMBA: Hi. My name is Jennifer Msumba, and I wanted to make this video as my opportunity to express what happened to me when I was at the Judge Rotenberg Center, in regards to the GEDs and how it affected me. I was there from the year 2002 — March 2002 until April in 2009.
When I would get a GED, I would get — most of the times I would get a very bad muscle cramp that would last me for one to two days. I would get burn marks on my skin. They like to call them small, raised bumps. They’re burn marks. It’s electricity going into your skin, and it’s very itchy and it stings afterwards, and you have these circular marks where you got the GED. I also at one time was given several GEDs in one leg in a row, and I had a terrible pain shoot all the way through to my foot. And after that, I had no sensation in my skin on the lower half of my left leg. And for about a year, if I would touch my skin, I couldn’t even feel anything that touched my skin, from that.
Also the GEDs will, what they call, misfire a lot. That happened to me in double digits, where it would go off by itself maybe if it got wet. One time I got caught in the rain. Other times, if they give a GED to someone else nearby and that device is too similar to yours, it can set yours off. Then I had times when the staff made mistakes and mixed up whose device they’re using. So they’re meaning to give a GED to another student, and they give it to you. I’ve seen some people’s just go off and keep going off and going off over and over, and staff would literally to have rip open the bag and pull out all the wires to get it to stop. These are things that you were getting shocked for no reason at all, not even for behavior. It’s an accident, and it happens all the time.
It’s not safe. It doesn’t feel safe. I ended up having nightmares weekly, if not nightly — at least once a week — about JRC and the GEDs, about being on the GEDs. In these nightmares I’m getting shocked. During the day, if I hear certain noises, like the Velcro they use to keep them closed, I freeze. I feel like it’s about to happen to me. Or if I’m having a hard time, I start to think I’m there again and that I’m going to get shocked for it. I’ve been to dozens of horrible places, hospitals, residential schools — and I have never once had a nightmare about any of them.
No, Autistic Hoya isn’t relocating to WordPress, at least not anytime in the near future.
What happened today is that I had a fantastic (and by fantastic, I mean downright awful and frustrating) experience trying to leave a comment on a friend’s blog that uses WordPress as the platform. This was by no means the first time this had happened. In fact, it was probably the dozenth or so this year, if not more. With each passing comment, I’ve grown more and more frustrated with my or my computer’s general inability to leave comments on WordPress-hosted blogs. I finally decided that the easiest way to solve this problem would be to create a WordPress account. Then, I ran into the problem that although I wanted to create only a username and not a blog, the system decided to break itself and commit suicide, forcing me to create a blog.
I know of another Autistic blogger who uses an iPad and thus finds it nearly impossible to leave comments on Blogspot-hosted blogs without finding a standard computer with which to write the comment or otherwise going through a roundabout method. I’ve spent months generally unable to leave WordPress comments other than the odd one that’s been allowed to slip through. I hate it when the internet becomes inaccessible. I particularly hate it when the internet creates parallel inaccessibility — when one person can use platform A but not platform B, and another person can use platform B but not platform A, thus creating a mind-boggling, obscenely frustrating paradox impossible to overcome without vast amounts of sheer rage and caffeine. (And stimming, too.)
I know that I’m guilty of not having universal accessibility with my own site, as I haven’t been able to make audio recordings of each of my posts, nor have I learned how to allow folks to change colors, font sizes, and such things, nor can everyone leave comments — and in all likelihood, my former policy on never deleting 99% of comments has created an environment in which at least some people whose comments and insights I’d love to read likely feel emotionally and psychologically unsafe and therefore do not add to the conversation. I try. I really do. But it’s oh so frustrating when the fault lies not with you but with some enormous, impenetrable company that has created a barrier that you have little to no control over removing or altering in order to gain access.
Sometime last week, I was inside a large retail store when I went to the fitting room to try some clothes, only to find my olfactory senses violently assaulted by the overpowering stench of commercial cleaning chemicals that made the entire area completely inaccessible to me. This doesn’t happen to me as often as it does to some friends of mine, but after staggering from the fitting room in a near fit of rage (yes, Andrew, the pun was intended) , I found that the folks working on that particular retail store would likely have neither ability or nor will to change their cleaning practices to accommodate all people with chemical allergies or sensitivity or sensory processing differences, and furthermore, that the only real means of redress lies with the folks at corporate. Not to be a cynic — or perhaps I do mean to be a cynic — but I highly doubt that one letter from an angry customer, no matter how articulate or well-argued, is going to sway them to mandate more accessible environments for all people.
Sometimes I hate having an invisible disability. It means that my disclosure will always be questioned and sometimes interrogated, frequently disbelieved and occasionally attributed to a lazy, defiant personality wont to “make excuses.”
When exploring potential future opportunities for myself based on my current course of study (I’m an Arabic major), I recently realized that pretty much every standard language proficiency exam for people seeking jobs as translators, interpreters, or language analysts requires an oral component (understandably), and that this sometimes takes place over the phone. If that is ever required of me during a job application process, I’m going to have to file for an accommodation under the ADA, because I have auditory processing problems that make it very difficult for me to conduct extended conversations over the phone, including in my supposed native language, English. And that realization gave me pause, because I’m afraid — with good reason — that that request could result in an act of discrimination against me in the hiring process that would ultimately be nearly impossible to prove in any kind of civil suit.
Accessibility is a tricky thing. The thing about it is that it ought to be the basic, minimum standard of human decency — to provide equal access. But the reality of it is that it’s applauded and cheered when someone makes an effort to make a place or a website or a process more accessible to people with all sorts of disabilities and differences. An act of basic human decency has become the exception, better than the norm. And never mind requests for accommodations for accessibility reasons. We’re told to be grateful, to be thankful, to grovel at the feet of such generous benefactors who went out of their way for us. That, or we’re told it would cost too much, would take too much time, would involve just too much effort, and so it’s not worth it. Either way, we’re left by the wayside.
So it becomes easy to resign myself to the lack of accessibility whenever I encounter it, because frankly, it gets too tiring to demand change from ears unwilling to pay much more than perfunctory attention. At that point, why bother? If the basic, minimum standard of human decency is in reality a far-fetched and unrealistic delusion, then I’m done trying. Why demand equal access? Why demand my basic rights as a human being or even just the acknowledgement of my humanity when my kind is routinely subjected to the worst kinds of dehumanization anyway?
“That’s unreasonable” is just another way of saying, “You, Lydia, you personally are not worth the trouble, because you’re just not as important or valuable as a normal person. In fact, it would be so cost-prohibitive to make sure you have equal access that we’re appalled that you even had the gall to demand it. Who the hell do you think you are?”
It takes one step to move onto this long, tortuous path.
This is very likely to be the very last post that appears here, unless Autistic Hoya ever does actually migrate to this platform, which I don’t foresee and haven’t planned or intended to do. For those of you who’ve actually found and or read this brief screed at WordPress and the internet and general inaccessibility, I hope that at the very least I’ve provided sufficient amusement or engagement for the few minutes of your time that it took to read this. If you (surprisingly) haven’t read Autistic Hoya before (and really, I’d be very surprised if you stumbled across this page without having read Autistic Hoya before), you can find more of the same at www.autistichoya.com. If you’re having accessibility problems, by all means, please share them here or elsewhere, or if you too find it impossible to leave a comment, maybe you can just send me an email. I listen to accessibility complaints, but that’s probably because I’ve actually experienced inaccessibility. Trust me, I know it’s not fun.