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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
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]
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.