» Diane Wiener: Thank you, everyone, for joining us this evening.
Welcome to “A Crip Reckoning: Reflections on the ADA@30”, a virtual panel and discussion offered as part of the series: “(Dis)courses: Interdisciplinary Disability Dialogues”.
Created by the Office of Interdisciplinary Programs and Outreach at the Burton Blatt Institute, housed in the Syracuse University College of Law.
We acknowledge with respect the Onondaga Nation, firekeepers of the Haudenosaunee, the indigenous people on whose ancestral lands Syracuse University now stands.
I’m Diane Wiener, a Research Professor and the Associate Director of our office.
I’m a white passing, female presenting, gender nonconforming, neuroqueer.
I also identify as a Crip, Jewish, Mad, and a pantheist.
I’m doing that description for you in the spirit of accessibility, it’s an image description of my embodiments and my emotional landscape.
I have long salt and pepper hair and green glasses.
And I have my camera in this direction, which is vertical, in the portrait setting, because of my visual impairments.
“(Dis)courses” is an exciting ongoing series on disability literature, media and the arts.
Focusing on critical reflection, teaching, and research in today’s world.
Tonight, we’re very honored and pleased to present this virtual panel and discussion featuring five distinguished thought leaders and scholar activists in the worlds of disability culture, education, advocacy, and innovation.
Our panelists are: LeDerick Horne, Naomi Ortiz, David James “DJ” Savarese, and Alice Wong.
Our esteemed panel moderator is Professor Stephen Kuusisto, who is the director of the Office of Interdisciplinary Programs and Outreach, and a University professor.
I will introduce our panelists and moderator in a few minutes.
Tonight’s discussion topics will include: ableism, cultural change, equity, creativity, and intersectionality.
Zoom webinar participants will have the opportunity to ask questions of and make comments
to the panelists during the last 20 to 30 minutes of the virtual gathering.
I will describe our Zoom webinar accessibility features shortly.
Copies of selected texts will be available for purchase, via the Syracuse University bookstore, with thanks to our colleague, Karen Spencer.
We will provide a link for you in the Zoom chat, and also email you – if you are registered here, of course – so you’ll be able to get discounted copies of our participants’ beautiful
This event was made possible with generous support from University Lectures, and the Office of Diversity and Inclusion.
Thank you everyone.
Thanks to our American Sign Language interpreters, Mareike Larson and Dave Gratzer, and Terre Slater of Empire Interpreting Service.
And thanks to our live captioner, Missy, from Professional Reporting Services.
Special thanks to Rachael Zubal—Ruggieri, from our Office of Interdisciplinary Programs and Outreach.
And to Kyle Jaymes Davis, who is the behind the scenes wizard of this production.
And he is from the Syracuse University College of Law’s IT services.
Some Zoom accessibility specifics follow, as we get started with this evening’s interactive
I want to make sure the captioning is all set.
Are we good, now, Kyle?
»» Kyle Davis: It looks like it, but please let me know in the Q&A if that is not the case.
» Diane Wiener: Alright. So, we have multi-format ways of handling accessibility here, and it looks like we have a question.
Someone just joined and missed the announcement about the discount offered to books of the speakers.
Can someone please put what that was in the chat?
We promise we will.
We will also email everyone who is participating, thank you for asking about that.
Kyle will be sharing the link, and the person said “awesome”, and you’re very welcome.
So, let’s talk a little bit, just for a moment, so we can get to the heart of the matter, about the accessibility facets of this event.
If you have any questions about access or any concerns about anything at all, at any point, you’re welcome to send a private chat message to Rachael Zubal—Ruggieri or to Kyle Jaymes Davis, and we’re aware that some people may not feel comfortable or be able to comfortably use the chat.
We know that Zoom has its ups and downs, we’ll say politely.
So, if you’re unable to access the chat feature, for whatever reason, you can use the “raise hand” feature – speaking of disability language – and we will turn on your mic temporarily, and your video temporarily, and you can ask your question that way.
Or express whatever concern you may have.
American Sign Language interpreters will be on screen the entire time.
We will have live captioning the entire time throughout the event.
A transcript of the live captioning will also be available throughout the evening.
You can enable your subtitles by clicking on the “live transcript” button.
Sometimes, but not always, that’s at the bottom of the Zoom window, depends on the interface you are using, and you select “show subtitles” from the resulting drop-down menu.
And if you would prefer to view the full transcript in a side panel next to the meeting window, you can select “view full transcript” from that same menu.
Should any visual content be shared, which will happen at least once that I’m aware of, it will be accompanied by an image description.
And as I said, during the last 20 to 30 minutes of our event we will have a discussion.
We really want this to be engaging and interesting and participatory.
And kind of like jazz.
If you want to ask a question, or make a comment, please use the Q&A feature, which includes
the option to remain anonymous, or you can use the chat feature.
And a third option, as mentioned, is you could use the “raise hand” feature.
I didn’t name it that, that wasn’t me.
And your mic and video will be momentarily turned on so you can ask your question or make your comment.
We’ll do our very, very best to respond to as many people as possible.
About 5 hundred people registered for this, I don’t know how many people are here, but we’re very honored and delighted you are with us.
And I will read aloud the questions and comments shared via these different facets of the Zoom interface.
That way, the comments and questions can be made available in the live captioning, in the transcript, and interpreted into American Sign Language.
If your questions and comments are not addressed during our event, we will do our very best to respond to you after the event.
By reviewing the chat and the Q&A, which will be saved.
Or you are welcome to send questions and comments to us in an email address, which Kyle will put in the chat, which is email@example.com.
Or post them in the discussion section of the Facebook event page associated with our event, which we’ll also share with you.
If your questions and comments are meant for a specific person, or for Professor Kuusisto, in other words a panelist or Professor Kuusisto, who is, of course, a person. [laughter]
Please indicate this information in your correspondence with us, and then after the event, we’ll do our very best to reach out to registered participants via email with all of these details as well.
Multiple communication approaches are clearly happening this evening.
Let’s all be very mindful of that, thanks so much.
And this Zoom webinar is being recorded.
An accessible video will be posted publicly, on our website, as soon as it’s available.
And now, it is my honor and distinct privilege and pleasure, to introduce our panelists and our esteemed moderator.
LeDerick Horne is a poet, speaker, and advocate who uses his gift for spoken word poetry as the gateway to larger discussions on equal opportunity, pride, self-determination, and hope for people with disabilities.
Naomi Ortiz is a writer, poet, facilitator, and visual artist, whose work focuses on self—care for activists, disability justice, intersectional organizing, and relationship with place.
Pratik Patel is the director of information technology access for the City University of New York, CUNY and the Owner of EZFire Enterprises LLC, which consults on a variety of technology projects on accessibility for people with disabilities.
David James “DJ” Savarese is an author, artful activist, public speaker, and practicing optimist, working to make self—determined lives a reality for non—traditionally speaking people.
Alice Wong (she/her) is a disabled activist, media maker, and consultant, and the founder and director of the Disability Visibility Project, an online community dedicated to creating, sharing, and amplifying disability media and culture.
And Professor Stephen Kuusisto is a University Professor, and, as I mentioned earlier, the
Director of our office, the Office of Interdisciplinary Programs and Outreach at the Burton Blatt
Professor Kuusisto is a widely published poet and author, and a frequent speaker in the United States and abroad.
I’m going to turn off my camera and my microphone, and get into the chat interface now.
I will be back with you on camera, and with the microphone, when we get to the Q&A, the discussion, at about 9 o’clock.
And now, please join me in warmly welcoming our distinguished guests and moderator, and thank you again, very much, for joining us tonight.
We are delighted and honored that you’re here.
»» Stephen Kuusisto: Yay! Yay, yay.
Can you hear me?
Those who hear?
I want to applaud Diane Wiener and Rachael Zubal—Ruggieri, who have worked behind the scenes, rather tirelessly, to make this Zoom community project happen.
And to make it as accessible and fully inclusive as possible.
They have done remarkable work, and I’m so proud to be their unindicted co—conspirator,
as they used to say back in the Nixon administration.
I am Steve Kuusisto, and I am a poet, an essayist, memoirist, journalist, and a bit of a gadabout.
I want to describe myself.
I am wearing a gray and white Icelandic sweater.
I am a 65 year—old, slightly round—faced, Finnish-American guy.
Which means I’m rather pink, actually.
I’m wearing my favorite dog-walking hat, which is a Black Lives Matter baseball cap.
And I’m sitting in my basement in front of a painting, which is of a shipwreck.
Which is not, in any way, I think, a marker of how I feel about what we’re doing.
Some years ago, a wonderful American poet, essayist and memoirist, who was disabled, named Nancy Mairs, who wrote a number of wonderful books, wrote an essay that became really canonical.
That is to say, it’s now included in every anthology of terrific first-rate American essays.
That essay was called “On Being a Cripple.”
If I had been a little less lazy, I’d have looked up, for tonight’s presentation, what
Year she first published that essay.
But I want to say sometime around 1990, 91.
And, so, that essay came of age just as the Americans with Disabilities Act was also coming online.
Disability literary and artistic culture began to really move in accord with the new and dynamic human rights opportunities opened up by the Americans with Disabilities Act, signed into law in 1990.
Nancy Mairs, in this wonderful essay, describes how the word “handicapped”, or the word “disabled”, do not describe her.
She had multiple sclerosis.
And she found that those words were singularly out of focus.
But as a scholar of religion she discovered the word “cripple” in the Lindisfarne gospels, which date back to the 11th century.
She said, “cripple” described me.
“As a cripple,” she said, famously, “I swagger.”
And she might not have been entirely the first person to adopt the word “cripple” to describe her own relationship to physical difference.
But she certainly became quite well known for that essay.
In the years that followed, cripple consciousness has become a singular dynamic of reclaiming
disabled lives at the table of culture.
“Crip life”, as we now call it.
To “crip” something, as we say, using the verbal —— the verb version of it, means not only to demand our place at the table, but it means design justice.
It means to imagine new and fully accessible and inclusive ways for those who are physically different to be part of the mainstream.
Moreover, it means using our imaginations and our advocacy and intelligences to envision
better ways of doing things.
Just as this event tonight demonstrates how many ways we can engage with a Zoom meeting.
Just so, “cripping” means to, not only meet the ADA requirements for accessibility, but it really means to go beyond them.
Here at Syracuse University, we have a longstanding graduate student committee called the Beyond Compliance Coordinating Committee.
Going beyond compliance means to imagine disability and the needs for accommodations that the disabled experience as part of a generous and visionary – to use a opto-centric term – approach to imagining public space.
As our population ages here, and in my family’s native Finland for that matter, finding new
ways to engage with diverse, physical populations means everything.
So, why is a celebration of the ADA at 30 “A Crip Reckoning”?
And why “a reckoning”?
I think this is because we know that there are miles to go yet, in the fight for opportunity, justice, and liberty for those with disabilities.
We know that disability is intersectional.
That disability means Black people, Latinx people, Indigenous people, it means immigrants, it means migrants, it means the old, it means women, it means people with complex sexual orientation and trans people.
“A crip reckoning” means, in some sense, how can we both celebrate the ADA for what it has done, and how can we use this occasion to talk vigorously and with discernment, with nuance and scruple about what needs to happen now?
So, those are my opening remarks.
And I’m so privileged to be on this stage with such great disability activists.
And with such an audience.
I’m so pleased.
Pratik has agreed to go first.
And I just want to say, that the work that he has done, and continues to do in the service of making digital technologies and environments, not only inclusive for the disabled, but to push them to be more imaginative.
That it’s really been, it’s really great work and we’re really lucky to have him here tonight.
Pratik, are you there?
»» Pratik Patel: I am here.
»» Stephen Kuusisto: Yay!
»» Pratik Patel: Thank you so much, Stephen, for that introduction, and the invitation to be here, on this panel, with all of the esteemed panelists, and with you.
Tonight, before I begin, in the service of accessibility, let me give you a brief description of me.
I’m sitting here, in my living space, wearing a white shirt and a dark jacket.
I’m Indian-American, dark hair, brown eyes.
And I am blind.
And that description should suffice.
And in the service of full accessibility, you will notice that my video is somewhat dimmed.
It’s primarily because of lighting, but, you know, it works for accessibility as well.
So, tonight I want to talk about the ADA and how it has mostly failed when it comes to access to technology.
Thirty years ago, when the ADA was signed, the Internet, as we know it did not exist.
Most people used typewriters, if you can imagine that, or word processors.
Or, if they had access to the Internet, it was a rudimentary version of what we know today.
Because of that, the crafters, and us as advocates, failed to imagine what could be possible.
Subsequent to that, law makers, regulators, and even many of us failed to see some of the advantages, and the disadvantages of technology being such a pervasive part of our lives.
And because of that, when it came to looking at accessibility to digital spaces.
We were far along in the development of technology and digital technology to realize that we needed to make sure that ADA covered the technologies that were being developed.
But because we were late, and regulators and Government was not far seeing enough, there was an incredible amount of confusion.
Practically, through the 90s, and through the middle of early to mid two-thousands, there was no guidance related to accessibility and technology.
And when the guidance came, it was sporadic.
So, the access that we enjoy today, had to be done through other means, such as section 508 of
The Rehabilitation Act, especially in the university environments and certain government entities.
But, because of that, many of the commercial technologies were not accessible.
And the access we enjoy today, is also — it’s somewhat sporadic.
In the middle 2000s or so, we began to recognize that there were emerging classes of technology that were becoming available, where there were some significant gaps.
And, no matter how lawmakers applied the law to these technologies, the ADA would not cover them.
So, many of us got together, in the mid-2000s, and looked at creating other opportunities through law and advocacy to make other technologies, specifically communications,
So, late 2000s, we worked with Congress to pass the 21st century Video Accessibility — Communications and Video Accessibility Act.
Or, as we call it, CVAA.
This brought technology access significantly forward, in that it provided access to a whole class of new technologies, including captioning on videos, video description, accessibility
to different interfaces, such as televisions, as well as advanced technologies, such as gaming.
This was passed in 2010.
And many of its final regulations have come into effect over the past few years.
Of course, this means that access to technology is still in its infancy.
Even 30 years after the ADA has been passed, and even the advances that we’ve seen in technology.
The access we see has been granted to us by courts.
In some cases successfully, in some cases not so successfully.
The definitive word of this came last year when, finally, the Supreme Court rejected the appeal that Domino’s made in its lawsuit.
Where, Domino’s claimed that it did not have comply with the ADA.
And the Supreme Court rejected its appeal.
So, finally, we have a definitive version of what we think is final on this.
What we can use, however, is guidance from our regulators, specifically the Department
We can see there are opportunities that the Department of Justice can use to enhance what is now a blank slate.
Even though, those of us who work with companies, or different entities, say there are these guidelines.
If there are no technical guidance, if there is no technical guidance, we will find that
we face a bigger challenge in that companies will interpret what is allowed and what is not allowed.
In addition to that, there are other technologies that are coming online, because of the pandemic, because of different technologies being developed, that will not necessarily be —— necessarily be covered.
And we must look to ensure that those are covered, either through guidance, through advocacy, or through other laws, as we may need to pass.
ADA of course is not perfect.
We know that.
And from time to time, we will need to work hard to either pass additional laws, or to
have ADA amended to have technologies included.
I want to specifically talk about workplace environments.
Because of the pandemic, the trend toward remote work is accelerating.
It’s a trend that has been going on for some time.
Those of us who have worked remotely, and worked with companies, have advocated
for disabled people to be included in remote work situations, so that more of us can be employed.
But there are some significant gaps.
In some ways, not only the regulators have failed, but we have failed as advocates in addition to that.
I know it may be a little hard to hear.
But, many of us fail to consider the implications of advocating for consumer—based technologies to be accessible, while forgetting that technologies that work in the background, on the administrative side, also needed to be accessible.
And because of that, I think workplace environments still remain significantly inaccessible to disabled people who are working, or who want to work, but aren’t able to because the technologies are not accessible.
There is some hope, we are in a good place when it comes to some of the largest companies, such as Microsoft, Google, Salesforce, who have higher dedicated staff to make their technologies accessible, including the administrative side.
But that doesn’t mean we’re completely out of the trouble zone.
Just because bigger technology companies make things accessible, that doesn’t mean medium—sized and smaller companies are going to do the same.
So, we need to address that particular issue, and we need to address it really quickly, either by working directly with the companies, or with working with the Department of Justice to have rules established, or Department of Labor.
Let me just talk a few minutes —— talk to you a few minutes about what’s coming.
»» Diane Wiener: Pratik, I’m sorry for interjecting, this is Diane speaking, but we have someone who has “raised the hand” function, and I think they may have a concern.
And it’s Janice, I just want to address and make sure everything is okay.
And we’re trying to address multiple accessibility nuances in the background.
I’m sorry for interrupting.
»» Pratik Patel: That’s okay.
»» Diane Wiener: Janice, Kyle will unmute you.
»» Kyle Davis: You should be able to unmute yourself now, Janice.
This is Kyle.
»» Micah: Yeah, yeah, I’m fine, I think maybe —— maybe you meant Micah maybe.
I’m not sure.
»» Diane Wiener: Hi, Micah, yeah the screen says your mom’s name.
Glad you’re with us, can we help you with something?
»» Micah: No, I’m fine, I’m not sure.
I didn’t press anything.
» Diane Wiener: Okay. Well, it’s alright thank you we’ll go back to where we are and we’re happy you’re here.
I want to make sure, I’m being given some feedback that if I’m using the chat, is that blocking people’s access to the screen?
Because, I think it depends on which interface people are using.
And we are in fact, monitoring the Q&A, yes, PJ, thank you.
And we are monitoring the chat, trying to do both of those with other folks in the background.
So, if my using the chat is blocking access, obviously that’s not going to work.
So I need someone to tell me if that is happening, and thank you, Camisha for the information.
Does anyone have any concerns about access at this juncture?
I know somebody wants to —
If people open the chat function, it will appear on the side of the screen and won’t block the speaker.
So, I have the chat open now, I hope it’s not —— undermining anyone’s access.
And I will do my very best to keep in response with all of you, and I’m going to back away now, because I want to go back to what we were talking about, I apologize, Pratik.
»» Pratik Patel: That’s okay.
»» Diane Wiener: Thank you everybody, very, very much.
»» Stephen Kuusisto: As your moderator, I would just point out that that accessibility glitch speaks to the very things that Pratik, you are talking about.
»» Pratik Patel: Yes, exactly.
Zoom, and these kinds of remote meeting situations are pretty new to a lot of people, and it takes a bit, not only getting used to, but getting everyone to be on the same page.
So, let me just spend a couple of minutes talking about — end my talk by talking a little bit about where we’re going in the future.
Or, where I think we’re going in the future, and what we need to pay attention to as we move forward.
As I said, the remote work environment situation is accelerating, and even after the pandemic, we are going to be looking at a lot of companies employing individuals on a remote basis.
Which means some good things for disabled people, but at the same time, if the access is not there, then those opportunities don’t exactly work out in our favor.
So, I think, workplace accessibility is a significant part of what we need to look at
In a very short—term.
Somewhat long—term, in the future, say about five years or so, we need to take a
look at full access to virtual environments, as well as what is called “augmented reality”.
Virtual environments will be used for remote work, entertainment, and additional possibilities that we can’t even imagine right now.
Similarly, augmented reality will be used in a variety of situations.
It is already being used in workplace environments, in some places.
We’ll be looking at automated vehicles, and accessible transportation over the next ten years, or so.
I won’t talk too much about it right now.
But, the last thing I want to say, and something that we all need to look at, is the emerging field of synthetic biology.
Technology as we look at right now, is what we interact with.
But technology, going forward, will be who we are.
It will define who we become in the future.
Or, the discussion we need to have is, who we want to have become.
Who it is that we want them to make us.
I know that there are lots of controversies and discussions that we need to have about things such as CRISPR, genetic manipulation, to eliminate disabilities versus individual choice of who and what kind of access we need to have, or we’re going to have.
So I think that’s a good place to end and I will turn it back to you, Stephen.
»» Stephen Kuusisto: Thank you so much, Pratik. The rapid expansion of technologies into AI and the dynamics of new algorithms that affect public space segue into the whole idea of design justice.
You know, if you’re a person who is trans and you’re trying to go through a metal detector in an airport, you trigger every alarm.
And what follows is indescribably awful, in terms of the human interactions.
So, we do have to think with a visionary crip design justice view, about what the technologies, and post-molecular medicine, are going to be like.
So, thank you so much for those remarks.
This might be a nice time to segue to Alice Wong, who works at the intersections between art, and culture, and media, and literature, and voting rights, and public advocacy.
Are you —— are you able to join us, Alice?
»» Alice Wong: I’m here Stephen. I am here.
So, hey everyone.
My name is Alice Wong.
I am an Asian-American, disabled woman.
I have short black hair.
I’m wearing a warm, fuzzy, gray, fleece jacket.
There is a mask over my nose, attached to a ventilator.
My background is completely dark because I am a creature of the night.
»» Stephen Kuusisto: [Laughter].
»» Alice Wong: And proud of it.
Here’s to atypical chronotypes.
Yeah. So, I’m going to just keep my comments very short, because I want to get into the questions later on.
I’m talking to you all from San Francisco, California.
And, you know, I am really pissed off.
And really tired.
You know —— this has just been almost 11 months, as we’re approaching almost a full year of the pandemic, in San Francisco, at least.
You know, with the first stay at home order was announced, I believe, mid—March of
And I have not left my home once, except in October, for a flu shot.
So, this has been my life, my existence.
And I’m not alone in this this.
There has been thousands of — billions of people, all over the world, who already are sick, disabled, immunocompromised, living at home for many reasons.
And still very much active, and engaged with the world from their bed, from their couch.
In terms of a reckoning, that is the kind of reckoning that I would like to talk about, in terms of how this pandemic finally, maybe finally?
Woke people up.
And people realize, “oh, shit, like disability, oh, that’s a thing?”
Or “oh, my gosh, crip time. What a concept!”
Disabled people have been paving this for centuries.
And only now that nondisabled people have been inconvenienced, in their lives, do they realize the privileges that they’ve had in terms of working, participating, and being safe.
Because, who gets to be safe?
This is the big thing.
I think we know right now, with this pandemic, with no end in sight, to be safe is a privilege.
And there’s a lot of people who are not safe.
And have never been safe, before the pandemic.
Disabled people, along with other marginalized communities ask that.
As part of that group.
Right now, in California, I’ve been pretty active, in terms of vaccine prioritization.
So, for folks who haven’t heard, our governor, in his illustrious wisdom – and I say that,
with a heaping scoop of sarcasm and a salty side-eye.
Last week, he announced that he is completely deprioritizing a tier of people, that includes high risk people under 65.
So, they’re going to prioritize this current round, which is phase two.
But the third phase, which includes essential workers, and high risk disabled people, chronically ill people, immunocompromised people under 65, will be forced to be part of this larger, age-based roll-out.
So, the justification of that, is for speed and scale.
To me, there is no science or logic behind that.
There is a lot of ableism, and eugenics behind that.
That is just my opinion on it.
I think the opinion of a lot of people.
This is what happens when we have decision-makers, people in power, ultimately, that do
not reflect all communities.
And this is why we need disability rights and disability justice.
Front and center, more than ever.
So, right now the last week, you know, I should be working on other things, but, you know like a lot of other people are just angry and incredibly scared, incredibly angry.
And really activated.
This has been an all hands on deck effort throughout California.
With groups such as Disability Rights California, and a lot of other community—based groups as other stakeholders.
So, I started a hashtag called high risk CA.
So, this was a way to give space to have people realize, “hey, we exist, and high risk isn’t just based on age.”
This is again, —— Part of the problem is the media’s framing of who is high risk, who looks like high risk.
And as lots of disabled people know, a lot of things are not appearance.
And disabled people still 30 years, 30 plus years now, after the ADA, still have to prove themselves?
Still have to defend their right to exist?
Defend their humanity?
And have to go through, inordinate amounts of emotional, intellectual labor.
Just to say, “hey, we’re here too.”
This is just beyond, like —— the low bar. Right.
This is just so ridiculous, that this is still needed now.
But this just shows how power is still really a huge issue.
Who has power.
I’m talking about political power.
I’m talking about cultural power.
I’m talking about all forms of power.
And, right now, I have been really heartened to see, you know, usages of social media, and just, other means for people, you know, without these typical access to power, access to influence, to where we’re using things to mobilize.
You know, we’re not waiting around.
We’re not waiting for people to pay attention to us.
And also, I think this is very much outlined with the people in power we’ve seen last year.
In the last several years, in the last several years, with the uprisings across the country against police brutality and white supremacy with Black Lives Matter movements.
Which I think is really important.
In terms of another topic, that disabled people and disabled leaders and organizers really need to recognize.
For example, this is my last comment, nearby Syracuse, in the neighboring city of Rochester, a few days ago.
A nine-year-old, young, Black, disabled girl, was brutalized by police.
And this comes just after last year, when the police murdered a black disabled man, by the name of Daniel Prude.
I’d like to question, and pose this question: you know, where are the disability rights organizers, leaders in the New York state area, who are organizing, who are being in solidarity with the local community leaders, the Black leaders, in Rochester?
You know, this is something that everybody should care about.
We should really place Black people, Black disabled people, front and center.
So, that’s it for now, I will turn off my video.
»» Stephen Kuusisto: Alice touches on so many important points, one of the things that the disabled know, is that the medical model of disability, which comes out of the practice of medicine, and which holds that people with disabilities are simply defective normal people, continues to damage those who lead disabled lives.
What’s the number one thing a doctor will say, when someone goes blind?
“I’m sorry, there is nothing more I can do for you.”
The disabled person is seen as a medical failure.
They are problematized, they are then reduced in the caliber and quality of their citizenship according to a society that thinks of normalcy as the advantage.
Then this, of course, balloons across intersections.
Disabled children, disabled people who have neurodiversity dynamics.
People with various mental illnesses are not only treated poorly by the police, but the problems multiply astronomically if we’re talking about People of Color.
So, what’s just happened in Rochester, New York, is actually a massive, massive, human rights crime.
And I take Alice’s point about upstate activists and, you know, what are we going to do?
I was thinking about this morning, I did not hear this story until this morning.
But I think that is a really important question.
Alright. So, Naomi, are you here?
»» Naomi Ortiz: I am.
»» Stephen Kuusisto: You notice I said your name almost as if you’re Finnish, Naomi.
»» Naomi Ortiz: Or Mexican.
»» Stephen Kuusisto: Ya think? Yeah.
We’re so pleased that you are here, thank you so much for taking time to be with us tonight. The microphone is yours, on anything you want to discuss.
»» Naomi Ortiz: Great, just taking in what Alice and Pratik shared to my heart and just sitting with that.
It’s like “oh, that is some heavy and real stuff.”
So, yeah, good evening!
My name is Naomi Ortiz.
I am a light—skinned mestiza with dark short dark hair, and I’m wearing silver earrings and a black sweater.
And I just want to thank Diane and the institute for inviting me and these awesome panelists to come together and talk about a reckoning with the ADA, I’ve been waiting, no, (LAUGHTER).
So, 30 years after the ADA —
Oh, I skipped over where I am, sorry, that’s important.
I’m joining you from the ancestral lands and the current lands of the O’odham, and the tribal lands of the Pascua Yaqui in Tucson, Arizona, which is about 50 miles from the U.S.-Mexico border.
So, 30 years after the ADA, where I live and across the country, disabled folks live daily with the reinforcement that we are the problem.
And that our bodies and our minds are to blame, for not being included or considered as community members.
There’s several key questions that I think disability community is confronting at this point in time.
The first of these questions is, if we’re relying on disabled folks to organize, to fight for access and inclusion, how do we confront internalized ableism?
The things that we’re taught to believe such as that we don’t deserve access because we can’t magically provide it ourselves, or that exclusion is a natural outcome of difference.
The disability community—well, at least some folks—often talk about the social model as a framework, a response to disability exclusion.
The social model basically says that disability is a natural part of diversity.
That the folks who experience disability are the experts, and it’s the barriers to access, which make us disabled.
However, while there is truth to the social model, a critique I have, and I think a lot of us have, is that when things become accessible it’s not like my disability goes away.
Or I’m no longer dealing with limitations.
For me, when access is real, it allows me to be more fully myself.
A disabled mestiza border-living fem.
And I don’t have to expend all of my energy just getting in the door.
I can expand energy contributing my thoughts and participating in what’s happening.
Access offers inclusion to a lot of different types of community members.
In many workshops I facilitate, I start our time with including disability access needs as part of what people share, along with name and gender pronoun.
Most non—disabled people will say something like, “well I’m not disabled, but my kid is
sick, and I might need to leave for a quick phone call to check in.”
Or, “I don’t have access needs, but I can’t hear very well. So, I might ask you to repeat
Laying a foundation of access allows people to have needs, whether or not they identify as disabled.
It allows us an opportunity to be more fully ourselves and present with each other.
We were, on this panel, asked to share our favorite definition of ableism.
One I like is, “ableism is a pervasive system of discrimination and exclusion, that oppresses people with disabilities.
Ableism operates on an individual, cultural, and societal level.
Deeply held beliefs about productivity, attractiveness and the value of human life, combined with basic fear of vulnerability, result in an environment that is hostile to people whose
abilities fall outside the scope of what is defined as normal or socially acceptable.
The following is an excerpt of Naomi’s speech that was missing from the recording, due to unfortunate technical difficulties:
That was adapted by a couple of disabled folks Melinda House and —— from I think teaching for diversity and social justice.
What strikes me about this definition is, namely, that a foundational aspect of ableism is a fear of vulnerability.
That to me is so helpful, because it helps explain to me while talking about disability access as a form of justice, is really asking people to grapple with their deep, seated fear of vulnerability.
I like to say this makes this makes me more compassionate and understanding, but it doesn’t. (LAUGHTER).
It does help me, though, with compassion for myself when I do everything I can, people still refuse to include me and other disabled people in my community.
Talking about disability as a fear of vulnerability starts from a different place.
I’m not asking people to understand the law, or I’m not asking to explain how my body works or justify why I deserve to be there.
It takes me off the defensive.
Talking about ableism as a fear of vulnerability asks people to grapple with why they are afraid to be vulnerable.
That is a real discussion.
It ties to security, food security, housing security, it ties to dignity and desire for dignity, and support and care.
It connects to our fear of change.
Which we desperately need people to be willing to talk about.
Because we have climate crisis, racial injustice, border issues, and all kinds of other change that we need to be confronting and not turning away from.
Ableism or fear of vulnerability to me is a doorway to do the really important work of examining what it means to be a human, with other human beings in this world.
Saying all of that, actually, I’m not super interested in facilitating those conversations.
Especially with non—disabled people.
I am grateful to the countless disability activists that are having those conversations and extending that gift of labor to the world.
We were asked to talk about ableism and how we understood it, but what I’m more interested in working on is solidarity.
A second question I think we’re confronting in this time, is how do we, those of us who identify as part of the disable community, talk about and practice mutual liberation?
When I pull up articles around disability on the Internet, and countless journals or websites, it is typically non—disabled parents talking about their children, or disabled people explaining disability to non—disabled people.
We desperately need writing and art, that assumes that other disabled people are the audience.
We need creative work, where we can go deeper than have the basic disability 101 stuff over and over again.
I need those spaces.
To deepen into our culture and knowing in my body and heart what solidarity feels like.
For over a decade, I worked at and ran a national youth run activist organization.
This was from the late 1990s until the early 2010s.
In that span of time, I watched the young people involved in our project who had all different kinds of disabilities and were ages 12 to 24.
And the way they related to each other changed.
In the beginning, most of the young people had an —— experience with special education.
And pretty intense segregation.
By the end of the time I was running this national project, more of the physically disabled and blind young people had been in mainstream education.
While more of the intellectual disabled and neuro diverse kids were still segregated.
One of my primary tasks that I set for myself was modeling solidarity.
This meant creating a space where we made decisions and discussed everything together.
In the process of these discussions, we paused often to make sure everyone was clear about what we were talking about.
I modeled asking questions, and the expectation that if people didn’t understand, it was their responsibility to say so.
I created the expectation that there was nothing wrong with going slow, and being clear.
While many of the physically disabled young people started off in the group rolling their eyes and snickering at the other disabled young people, by the end, we’re listening patiently and offering clarifying information.
The change for folks with intellectual disabilities and other kinds of disabilities who were more segregated was also really profound.
People talked more, but they also listened more.
They asked questions and expected to receive answers they understood.
This modeling of solidarity and mutual support is so lacking in our movement spaces.
For me, not just in disability spaces, but Latinx community, other activist’s environmental activist spaces we’re so busy trying to have the world understand us and the urgency of our issues that we often leave each other behind, or just leave each other out.
Solidarity has to be models within us first.
The third question, I’m really interested in talking about, is how the disability community, however loosely defined that is, relates access to place.
We of talk about place in terms of physical access to buildings and services and disability civil rights.
But this is all in relationship to the structures and modes of work and governance, which were set up by colonizing occupiers and reinforced by capitalism.
Which is the system of having to make money and pay money in order to live.
I want disability access to include understanding my ancestral and cultural knowledge of plant medicine.
I want access to my cultural spiritual heritage, and not have that only framed to me as appropriate because it’s a healing practice.
I want to understand in my body, how water moves.
And how that movement affects animals and plants in this place I live.
I want stories from other disabled, indigenous Latinx and —— people about how they negotiated accessing cultural and religious rituals.
This concludes the excerpt that was missing from the recording. The following is a continuation of what appears in the recorded video.
Place may or may not include the roots of our cultural heritage, but we are responsible to the land and to the people of the land.
That responsibility includes solidarity- building and access.
And the last question I think we’re grappling with, in this time, and something that Alice brought up too, is how does care of self happen when we do such heavy, emotional labor for inclusion?
I write a lot about self—care.
And I write about self—care as a disabled mestiza, so many of the stories are from my perspective, being grounded in the realities of ableism and racism, but I also interviewed over 35 other types of social justice activists, doing really different kinds of work over the U.S. and Mexico and Nicaragua, for the book, “Sustaining Spirit”.
There were many threads that brought us together.
Many which are sourced from place of deep wounding due to exclusion.
Another thread was a collective response to needing to negotiate our value.
To the community we lived in.
I’ve written about, but continue to be so curious, how people deal with the lack of resolution and sustain this kind of work for the long haul.
I’m interested in looking inside the cracks of the foundation that we’ve built structures of movement work on.
Cracks that go so deep, and are so profound that they offer nothing but contradictions.
For example, how do we, as disabled people, negotiate needing resources in order to stay alive, and yet, believe and act on environmental justice?
How do we honor and make sense of the emotional abor that is necessary to do accountability work?
These are the questions I’m looking at within my art and writing.
And, I believe exploring these questions within disability community, and our cultural communities, can help us develop strategies, and deepen into our own understandings.
All of which support us in our efforts towards mutual liberation.
»» Stephen Kuusisto: Wow that’s great.
The intersections between disability, place, history of place, spirit of place, spirit of body, more than acceptance of the body, but really a celebration of embodiment.
Rooted deeply in history, and storytelling.
Those things are so, so important for everyone, and critically important, I think, for people in the disability community.
Storytelling matters so much.
And also, a recognition that disablement, and the built environment, and the toxic environment, created by capitalism, are so profoundly connected.
I will tell you a quick story of a friend of Diane’s and mine, he’s a young writer named Taylor Brorby.
He’s from South Dakota, he is queer.
He went to protest the pipeline, and was arrested by police.
And they took away his diabetes medicine.
And he almost died in jail.
And he is writing, now, about the intersection between queerness, fighting for the land, and disablement, seeing those intersections.
And that, to me, is incredibly important and vital work.
Thank you also for bringing nuance to ableism.
Because the fear felt by those who are not, at least now, disabled, is such a —— it’s such a big, profound, collective muscle.
And it does negatively influence almost every conversation that the disabled need to have.
Because we are figures of fear.
So, we do the emotional labor of trying to diffuse that, which is important work.
But we need group help.
Not self help. Right?
So, that is just a wonderful presentation, thank you so much!
Really, I’m gushing.
»» Diane Wiener: Stephen, may I interject briefly?
This is Diane.
»» Stephen Kuusisto: Please.
»» Diane Wiener: Vocally. I will put my camera on just for a second.
We have a number of things in the background happening, involving different ways that people
are accessing this space.
So, we’ve adjusted the chat function.
We have many, many, many, wonderful comments, and feedback, and accolades, and joy and love being expressed.
There are about 212 people here, I believe now.
And so, I just wanted to say, if you’re having any concerns, and you weren’t able to
communicate directly with Rachael or Kyle, because of the settings, which I apparently I have to update, yet again, with Kyle and Rachael’s help.
You’re welcome to send a message to Kyle and all panelists, or Rachael and all panelists, or to me and all panelists.
But we’ve shifted the chat, so that every single participant isn’t going to get every single message.
Because, some people are experiencing some different ways of doing that.
So, we’re doing our best here, at Kuusisto, Zubal-Ruggieri, and Wiener Incorporated.
And thank you all very much for your patience, and for your eloquence, and beautiful things everyone is sharing together.
Back to you Steve.
»» Stephen Kuusisto: Our next panelist is a remarkable disability rights warrior.
“DJ”, David James Savarese.
He left out of his bio, that he is also a Peabody Award winner, for the, indeed, the film in which he is the primary documentarian star.
“Deej “did, in fact, win a Peabody Award, a year and—a—half ago.
He’s also a fellow of the Soros Foundation, and has been doing pioneering work, on behalf of those who speak with alternative communication approaches.
So, I’m — he is also a wonderful poet, and I’m so thrilled to welcome him to our Zoom stage.
»» David James Savarese: Hi everyone, my name is David James Savarese.
I am a white man in my 20s, with glasses, a goatee, and short, reddish-brown hair, wearing a black turtleneck.
As a former foster child, I know what it is like to fight hard not to be thrown away and forgotten.
As a practicing optimist, I believe, not only, that nobody is disposable, but that everybody is indispensable.
We are all essential and meaningful participants of something larger than ourselves.
I’m honored to meet you all, and gather here today to talk about where we are 30 years after the passage of the ADA.
And where, with a new administration in the White House, we might be headed.
As an alternatively communicating person who was fully engaged in regular education, from kindergarten through college graduation, and who is now gainfully self-employed, I have clearly benefited from the ADA and from my achievements as a highly educated person.
But for me, adding to the ADA is not just about changing or improving the law.
It is also about changing the lens people see us through.
It’s about unearthing the societal assumptions that still stand in our way.
It’s about moving us beyond a world of inclusion and exclusion towards a celebration of all forms of bio and neuro diversity.
And it’s about trying to actually unlearn some of what I’ve been taught.
As an artful activist, I’m a poet and lyric essayist, who favors metaphor, which opens us up to new ways of thinking, and finding connections between seemingly disparate things. \
Most recently, I’ve come to liken ableism to the cultivated garden of a speech—based society. What does that mean?
It means that flowers, with so—called “true roots”, are shown off, and a pretense of individualism and self-reliance are apprised.
It means that the garden wall is made up of communication barriers and, I would add, the physical body barriers associated with them.
Law, policy, and many assistive technologies assume the disabled are outsiders, striving to inhabit the cultivated garden.
They seek to offer us passage across the divide, by dismantling the physical barriers, and by helping us pass, or pose, as independent, able-bodied speakers.
But, once there, we are seen as exceptional and accepting of the status quo, further fortifying the very garden wall we hope to dismantle.
Most recently, at an NEH funded talk in “The Art of Flourishing” series, I encouraged all people to undermine what keeps us dutifully stuck in this inclusion-exclusion cobbling, in which some beings are seen as disposable, and others not, by seeing ourselves as one of many lives in progress, as a field of diverse and interconnected rhizomes, what some might call weeds.
We can’t change who we are, but we can change the hopeful ways we relate to each other. What if, instead of making our way into the garden, we invite everyone out into the field to rhize and thrive.
What might that look like, and how might doing so begin to render those walls irrelevant,
I would like to explore that question more fully today.
Let me see if I can explain what I mean by rhizing and thriving.
Those who are less attuned to the wisdom of plants might call it creatively improvising.
Unlike true roots, rhizomes persevere by creating a network of interdependent root bulbs.
If cut down, they grow back.
If necessary, they can lie dormant for up to a year before blossoming again.
I’ve introduced rhizing into every aspect of my life, to maximize my flexibility as I creatively improvise in my daily life and activism.
Certainly, it helps that Biden’s administration has prioritized communication accessibility, from day one.
Adding ASL interpreters to every daily press briefing, reinstating the Spanish website, and foregrounding stutterers as leaders worthy of being heard.
When we see a text-to-speech software user up at that podium, we’ll know we’ve arrived.
During my outreach campaign for my documentary film, “Deej: Inclusion Shouldn’t be a Lottery”, I discovered that this ceiling barrier could also function as fertile soil for intersectional connections to form.
As I screened the film and lead discussions at private, and public high schools, colleges, and Universities across the country, I found, time and time again, that my experience with the under-estimation of the strangers gawking, was something that resonated with an international
student from China attending Drake University in Iowa, with a Black female undergrad at
Macalester in Minnesota, with Upward Bound students at a private day school outside of
Boston, and with foster children in North Carolina, to cite just a few.
They too felt underestimated and unheard, strictly because their speech and bodies differed
from the norm of the particular community they were inhabiting.
As their local communities heard them speak out publicly, often for the first time, light bulbs went off for their classmates, teachers, professors, and administrators, who began to see these barriers within their own communities, and began imagining how to disrupt them.
These kinds of momentary, intersectional entanglements offer the kind of diversity necessary to bring about the transformative change our country, our world, our ecosystem requires.
It’s my hope that intersectionality becomes a new way of encouraging more rhizomatic connections.
If intersectionality gives us static and fixed identities, that are more and more particular, then it renders us more and more cut off from each other.
But, if we envision these aspects of ourselves as more and more threads, that offer us potential connections with others, and we add to our intersectional understanding of ourselves additional aspects of ourselves, such as poet, teacher, ecologist, then we open ourselves to more and more possibilities.
In case I sound like I think I’m enlightened beyond the rest of you, allow me to share my own communication biases.
What academics call, “textocentrism”.
I was four-fifths of the way through my honors thesis in anthropology, before I suddenly became mindful of my own bias.
A high achiever in mainstream education from kindergarten through college, I communicated almost entirely in written English.
What, I wondered, might I have lost in the process, and how might I make others open to my ideas?
First, I began to seek out the works of those autistics, some non—speaking, others not, who choose non—alphabetic forms of expression.
In my first ekphrastic chatbook, titled, “A Doorknob for the Eye”, I turn my attention to the artwork of seven autistic artists, and sought to converse with them in poetry – what I have often referred to as my native tongue.
I chose a poetic, rather than prosaic, form of telling, to honor the sensorial, to stretch the
multifunctionality of language, and to elevate, and not obliterate, their language of choice.
In my current ekphrastic project, three other poets and I focus on the artwork of one artist, Malcolm Corley.
In a poem entitled “Wood Nymph,” I begin to acknowledge some assumptions I’m unlearning. I’m going to read the poem.
But first, we’ll pause for Kyle to share the image and the description of it.
»» Kyle Jaymes Davis: Hi everybody, this is Kyle. I’m going to go ahead and put that image on the screen now.
Alright, it should be visible on your screens now, for those that can see it.
And it is a painting of a feminine—looking face with green, long hair.
And a blue and green background.
Go ahead, DJ.
»» DJ Savarese: “Wood Nymph,” by DJ Savarese.
Her eyes and mouth are leaves.
If she could talk, she’d melt, I think, or at least evaporate.
When the tree dies, so does the Hamadryad.
In this case, Aigeiros, Denizen of the black poplar.
To say that she is bonded to her tree, is to believe too much in the spirit of distinction.
She is the tree.
That triangular, tooth—leafed cottonwood.
When Erysichthon cut down Demeter’s grove, Limos bore like a beetle into his stomach, becoming the need to eat.
And eat, Erysichthon did, until he ate himself.
No chainsaw is ever happy.
Like the wood nymph, I live inside the grain of speech, the wood of warning.
He who harms my sister, shall die of insatiable hunger.
I love Mal’s painting, and clearly fell in love with the Wood Nymph.
I’m sure you have too, if not in your mind, in your heart.
I might answer, because she is who I want to be.
And she is almost not able to be distinguished from her environment.
And maybe we aren’t either.
Can I ask why?
I think it’s because we are in, and of, our environment.
It matters because we aren’t whole without each other.
I love that idea, that we’re not able without one another.
And without one another, we’re connected, but not as we should be.
I mentioned this, not because I’ve lost my focus, but because I’m freshly able to open myself beyond the mirage of my own skin.
Beyond the misperceptions and misconception of my body’s boundary.
What I love most about the Disability Rights Movement, is that it asks us to abolish all forms of discrimination toward all people.
Not just toward the disabled.
These days, I’ve unearthed my own human-centric bias, realizing discrimination expands beyond the human understanding that we are all interdependent parts of the same ecosystem.
As I end my opening remarks, I imagine you might be asking, “but what can we do to dismantle that garden wall right now, starting today?”
I encourage each of us to see ourselves as a part of something greater than ourselves.
Lead with an open heart and mind.
Offer more philanthropic and entrepreneurial support to people who self-identify as disabled.
Support and meaningfully engage with organizations like the Alliance for Citizen Directed Support and Communication First.
Ask who is being denied entry into the classrooms and schools, you or your children, or grandchildren, attend.
And insist they be allowed in.
Refuse to do things that exclude others.
Pass legislation that outlaws segregated settings for all people, and pass legislation that guarantees everyone a means to communicate.
Be brave enough to examine the misassumptions you hold that stand in others’ ways.
Give up scarcity thinking.
We all deserve our lives to be meditations on hope.
»» Stephen Kuusisto: That is wonderful, and so much important, imaginative, and directed political thinking there.
DJ is more than an optimist, one might say that he is an eco—futurist, anti—ableist visionary.
I’m going to say last, but not least, we have LeDerick Horne, who is going to bring our parade to an end.
Before we open things up for questions.
»» LeDerick Horne: Alright, thank you so much.
Yes, I’m LeDerick Horne.
I am a clean-shaven, African-American man who, at this date, is 43 years old.
I’m wearing a black jacket, white shirt, black tie.
And, as part of the description, I think also just as part of me digesting everything that came before my opportunity to speak.
I think it is also worthy of me noting that I’m sitting in the corner of my study.
With a blue wall on one side, a white wall on the other, and artwork my fiancée and I have collected over the years.
The study is in a house, that I’ve owned since, I guess 2007, a home that was built, actually, by my grandfather and my uncle.
A home that I bought from a cousin, on the same block that I grew up on.
And this neighborhood is firmly rooted in a Black community.
One that was designated so, and designed to be one, due to the practices of redlining.
My grandfather, who was a born farmer in southern Georgia, tells a story about coming up here and wanting to buy land, and wanting to start a construction company.
And if you were Black, you were sent to one realtor, if you were white, you were sent to another.
And, my grandfather is, what we used to call, a race man.
He was a race man.
He was president of the NAACP.
And I grew up in a household full of storytelling about the heights of the civil rights movement. He marched on Washington.
I think so much of his fight and his existence really informed me.
And the work that I do today.
This home is also less than a half-a-mile away from my elementary school.
The first place that I ended up being placed in a special-ed classroom, because I am a person with a learning disability.
And, I drive by that school many, many days, and there is still a sort of shock of pain that I still experience, when I reflect back on the mix of both joy, and then the absolute segregation that I experienced.
And I’m fortunate in that I am one of a handful of folks, who are from this community, who went through special education, folks with disabilities, who was able to go on to college.
Get a degree.
And through an amazing academic support program, really learned the value of connecting with the community of people with disabilities.
Disability was nothing that was spoken openly about, both in my household, or throughout all of my times in special education.
But once I got to the college program, I realized the value that that community had.
It was also the first time I really got introduced to what the ADA was.
I was born in ’77, I got to ride so many of the legislative victories of the Disability Rights Movement.
I graduated from high school, just in time for the ADA to be able to really firmly protect me, as a person with a disability.
As I went through college and then started my life in the world of work.
And I have worked very hard to address issues for folks with disabilities, and particularly young people with disabilities in our school systems.
And I’ve also —— I think —— you know, worked hard to also to root myself in bringing forth a lot of the conversation and dialogue around people with hidden disabilities.
And how we are—intersect, represented or sometimes not represented within this overall movement.
You know, I don’t want to take up too much time, because I really do want to kinda get into the dialogue with everyone.
But I was, in listening to everyone speak, I was just reflecting back on this year, and all the different challenges that I experienced.
And one of the more, sort of, frustrating things that happened to me was, being one of a handful of Black people with disabilities who gets to be invited to the front of the room at conferences and different events.
When Black Lives Matter really happened, to the extent where people really started paying attention to the cries of the Black community, my phone started ringing.
And I got asked to talk with leaders, at several different disability organizations, particularly organizations that look to serve people with learning disabilities and ADHD.
And many folks were interested in doing webinars, or having conversations about things like disproportionality.
And, also just the disproportionate effect that COVID had on the Black community.
And I, of course, am interested in engaging in those dialogues.
I think they are very valuable.
But, I also said to all of those leaders, that I think that there is something very distinct about
this moment in history, that requires us to engage in conversations, and to do work, that should be very different than what we were doing prior to COVID, and prior to George Floyd’s murder.
That, what I really encouraged all of those leaders to do – and I’m saying this very directly to all of those folks who are listening into this conversation – is that, as part of this conversation about intersectionality, I know that the fight for diversity, equity, inclusion, should be at the forefront of how we do this work, right?
So, I have, throughout this year, said to folks, “instead of us pointing a finger at school districts, and things along those lines, we should be looking at, who are the folks that we’re hiring within our organizations, right?
Are we providing a seat for Black people to be able to voice their concerns, and to have a meaningful leadership role within the organizations that serve people with disabilities?”
And almost — most of these organizations are like, “no, we don’t really have too many Black folks on staff.”
And, of course, I know that.
That is why they call the skinny brother from New Jersey, to ask what I think.
They should really be just turning to the person next to them, or a colleague within their office, or their organization, and engaging in a dialogue.
Which should have been happening for years.
So, I really, I just, I want to close out with a poem, but, one of the more sort of frustrating experiences that I’ve had, over the course of this year, with all of the different issues that are going on is just, I think that so many People of Color, Black people in particular just are like this is work we should have been doing years ago.
And yeah, like, where is the Black representation?
Where is the Black leadership within our movement?
What can we do to make sure that all People of Color, but particularly Black people, are able to have a voice, and play a leadership role?
In how these organizations work and function.
» Stephen Kuusisto: Yup.
» LeDerick Horne: Last year, I wrote a poem in recognition of our 30th anniversary of the ADA. And it’s during 2020, and all of the other, sort of, issues related to 2020 found its way within the piece.
And, I agree with everyone who spoke before, that we still have a tremendous amount of work to do, but I also wanted to take this as an opportunity to just, sort of, acknowledge a lot of the work that has been done, and the people who have made that work happen.
As well as, take an opportunity to celebrate the beauty of our community.
As people with disabilities.
So, I am going to try to recite this and see how it goes.
»» Stephen Kuusisto: Alright!
»» LeDerick Horne: I was also was like, as the LD person, I was like, “I’m not going to read that up here, we’re just going to talk.”
And so, (LAUGHTER).
This poem is called, “Until Every Barrier Falls.”
This is for the ones who would not be trapped, behind exclusion’s shameful walls.
And this is for the ones who will continue to push until every barrier falls.
This is for every wounded warrior, who came home and challenged our grateful nation to elevate its expectations.
This is for the ones who blocked the buses.
Sat in the sit—ins, and crawled to the Capitol.
This is for the protesters.
The marchers, those ADAPT angels with wheelchair wings, who troubled the waters of their time so that this generation might live, in a more inclusive now.
As I write this, all over America, monuments are falling.
And only questions stand atop each empty pedestal.
As I recite this, I hope an artist is listening.
And will respond with marble and bronze, but until then, Ed Roberts, Judy Heumann, this
poem is for you.
Let each line chase the light in your smiles.
And trace the contours of your commitment.
Let these words salute those dedicated to the ideals, that equality spouts from the branch of equity.
Independence is the flower that grows from access.
And freedom is rooted in the soil of advocacy.
This is for the ones who have embraced the reality that humanity is both fragile and mighty. And when we ask for help, it is not a sign of weakness, but instead, is an indication of our determination.
However you navigate, it is legit.
This is for those who read with their eyes, ears, and fingertips.
This is for the minds that dance in details.
And for the wide—eyed ones, who remake the world with every thought they think.
We are the river of innovation, from which the whole world drinks, and who am I?
I am a lover of words.
Left heartbroken, by every spelling test.
In school, my desk was in a classroom at the end of the hall, so this poem is for me too.
Within me, is the meeting of two movements.
I am Black and blue.
My disability is hidden, and I am the descendant of those who could not hide.
I am your neighbor, your countryman, one of the poets our nation has produced.
And here is what I know to be true.
This world is not enough.
And if this, here, is what we call, “normal,” I say, let’s be different.
Let us, on this day, celebrate every shape, every color, every way.
Let our actions commemorate the array of our being.
Build a future in service of the multitude, and let this century be the wilderness from which our better selves are born.
»» Stephen Kuusisto: Wow. That is just fabulous, thank you, thank you so much, LeDerick.
I just want to point out that, as a blind kid who was sent to public school, long before the ADA, and who for whom learning to read was incredibly difficult, and who had to really navigate through all of the obstacles.
The people that didn’t believe in me.
The cruelties of other students, the lack of awareness.
The struggle to gain language has been a really deep and abiding experience, in my life, and I suspect in the lives of all disabled people.
And then to alchemize that, and transform that journey into something really genuinely uplifting, beautiful, expansive.
Auden said the roses really want to grow.
And I think that there’s a way in which you and Naomi and DJ have all brought up that, that deep ecology of the imagination.
As a sustaining vision.
Wow. Thank you, that just —— absolutely wonderful.
I think, you know, on the subject of ableism, I would add one little thing perhaps.
Which is, that colleges and Universities are places where those of us with disabilities have an opportunity to learn about poetry and language.
Engineering, entrepreneurship, whatever it is our hearts may desire.
It still, however, remains the case that ableism thrives in the academy.
And one of the reasons for that is outlined in Jay Dolmage’s wonderful book on academic
ableism, is that higher education admits the disabled into its University ivory towers, really on sufferance.
That is to say, we’re letting you in, but we’re not so sure you really belong here.
And, moreover, we’re not going to do much to help you.
If you do need help, we’ve got an office over here, hidden in a dormitory somewhere.
That most people won’t be able to find.
And that’s where you go for your accessible books, or your note taking, or whatever it is you might need.
We won’t challenge our academic departments to build those accommodations into how they do business.
We won’t instruct our faculty into the dynamic possibilities of the disabled as important academic participants and citizens.
Nor will we envision new ways of teaching.
And new ways of imagining pedagogy, so that we’re simply not replicating 19th century rote learning.
We don’t want to do those things.
They are complicated.
They ask us to think too hard about who we are and what we do.
Ableism is not just fear.
It is also systemic.
And this is where it intersects with systemic racism, and the other systematized bigotries that still haunt the academy.
I just feel the need to mention that because, as a disability rights advocate activist, you know, I read off, almost monthly, about lawsuits that disabled students have to file against colleges and Universities because they won’t provide the most basic accommodations.
And that is still unfortunately legion.
Syracuse University was one of the first universities, if not the first, to have a disabled studies program.
And we are committed to disability and we’re making great strides here in our – on our orange hill.
But we, I think, can admit, those of us who work here, that there is still so much work to do.
Both here and across society.
I think, if more people were educated in college to the full dynamics and possibilities of disability, then some of the obstacles we all face as activists would certainly be diminished.
So, I’m going to stop talking and I’m going to open things up for questions.
I note that we have really about 18 minutes.
Which means we’ll get to some questions, but not others.
But we’ll, as Diane has pointed out, endeavor to answer those that we can’t get to via the good old—fashioned interwebs.
»» Diane Wiener: Thank you everybody, so much.
I’m going to share some energetic virtual applause in multiple formats, from here.
I’m about 20 miles outside of Binghamton, in a very chilly old house.
With two cats who have decided to run around in exactly the moment I had to turn my camera on, because you know how kitty cats are.
So, I wanted to clarify a couple of things.
First of all, I want to thank everybody again for being here.
And Kyle and Rachael and I are going to grab all of the different links that have been shared in the chat, all the resources that have been shared, the different links associated with questions
that were asked and then responded to.
We’re going to put them all together, into an accessible format, of course.
And when we give you the link to the video, and give you information about how you might reach out to get books from the bookstore.
We’ll also provide you with all of those different links.
We have almost 50 questions.
Maybe more like 75, actually, I think.
So, I’m going to go through some of these, and the ones we don’t get to we’ll do our very best to follow up with you individually.
But I know early on, there was a question raised specifically, where somebody was asking Steve if he could comment on aesthetics and relation to disability culture.
So, I’m going to see if I can find that question back here.
The person asked — I will go back to that one, I’ll ask one I know I have in front of me. Somebody asked, during the Q&A can you ask panelists to comment on the massive deaths of people trapped in nursing homes?
So, that is a very different question than the one I referenced, but I will find the other one and go back to it.
»» Stephen Kuusisto: Well, Diane, we’re not going to be able to get to all of these.
»» Diane Wiener: No, of course not.
»» Stephen Kuusisto: We’re going to have to stop at 9:30. So, let’s recommit to answering questions.
Either collectively or individually.
But let’s try to get to a couple before we have to cut off.
»» Diane Wiener: So, let’s start with that one.
»» People in nursing homes?
»» Diane Wiener: Yes, let’s take that one.
»» Alice Wong: Can I jump in, real quick?
I am just going to be very brief.
And I think that, you know, incarceration is incarceration.
You know, I think, if you work towards prison abolition, there is so many important connections with increasing community-based services.
And, to really think about how congregate settings are places where they are not safe.
Where people are trapped, where people are made invisible, and not human.
Which is why, we see, I think, the latest statistics 40% of all deaths due to COVID are happening in congregate settings.
And that means nursing homes, all kinds of institutions.
And this is why abolition of prisons, psychiatric hospitals, you know, all of these things are
disability issues, but, they are, very clearly, also racial justice issues.
So, that would just be my little comment.
There is a website called Abolition and Disability Coalition, that I will drop in the chat.
But, that’s about it for now, I think.
»» LeDerick Horne: If I can add to that.
»» Stephen Kuusisto: Please.
»» LeDerick Horne: Just before the start of 2020, I had, just a few blocks away, my father and my grandmother were in a home, and I had a staff of five people coming in to provide medical support for them.
Really, home health aides.
And, things had just gotten to the point where they needed to move into a nursing facility.
And I think, part of this speaks to like, how, we deliver health care, in our country.
The ways in which we’re able to really honor all people.
By how that care is given.
I think it also speaks to the need for an improvement in architecture.
Another house, my grand-dad built, but my grand-dad clearly didn’t think anybody was going to have a disability, because he put in way too many steps, right, and way too many barriers.
And so, it made it way too difficult to be able to provide support for folks at home.
It’s, I think, it’s a way in which we honor, we honor the way in which disability happens, as part of just a natural part of being a human being is all of us thinking about, when we’re building houses, when we’re constructing the spaces around us.
That we do it in a way which is truly inclusive for everyone.
»» Diane Wiener: I’m going to go back to that other question.
So, I’m actually going to take the liberty of addressing this to everyone, and not just to you, Steve.
The question is from Anthony, who is interested to hear, with regard to the ADA@30, about the dynamics between beauty and insistence.
»» Stephen Kuusisto: Well, I’m going to tell a little story, very quickly.
When I published my memoir, “Planet of the Blind,” I was at a reception for donors to Guiding Eyes for the Blind, which is where I worked at the time, one of the nation’s premiere guide dog training schools.
And a rather wealthy, white, golf club guy, walked up to me, and he said, “I read your book.”
And I said, “oh, what do you think?”
He said, “a lot of verbal pyrotechnics in that book.”
It was an interesting moment, because it allowed me to say to him, “well, you know, one of the things that the abled tend to think, is that the blind don’t know anything.”
So, there are, in fact, a lot of fairly nuanced and sophisticated words in the book.
They reflect my lifetime of reading.
Then, I also said, “my goal, such as one has one, was to try to explore the beauty and strange wonder of blindness, as it is lived on the inside.
And not as people who are not disabled imagine it to be.”
So, you know, I mean, I think that that’s a central aesthetic thing.
That most of us in the disability community who write, or paint, or draw, or dance, or make music.
We’re about showing what a, you know, weird and wonderful phenomenological difference we have.
And to make that manifest for people.
»» Pratik Patel: I would like to add to that, Stephen.
The idea that disabled people don’t have a consistent, or, at least, an idea of aesthetics that is consistent, at least internally consistent to themselves, is something that we need to convey. That they have, especially with regards to blind people and aesthetics.
Often, we get painted as someone who — people who don’t really understand the beauty of the world.
»» Stephen Kuusisto: Right.
»» Pratik Patel: Regardless of whether we’re a part of a spectrum of people who may have seen something in our lives.
And have an idea, or not.
Even somebody who has been blind, who may —— who may have been blind from birth, has an aesthetic perspective.
Regardless of whether they have seen it.
And, whether they have gotten that from their training, their teaching, their book
reading, it’s there.
And I think we need the opportunity to convey that.
»» Stephen Kuusisto: Yeah, we do.
And, that’s a prime directive, I think, in the lives of disabled artists.
We’re not just saying our lives matter, though that is important.
We’re saying, and we know some really remarkable things about what it means to be richly alive.
»» LeDerick Horne: If I could add.
I think, there is also that people with disabilities have a right to beauty.
»» Stephen Kuusisto: Amen.
»» LeDerick Horne: A right to beauty.
The things that jump out to me is, one of my mentors, Dr. William Henderson, going for a walk with him, he’s a person with a visual impairment, he hit me to, like, one way to think about disability is that, — or, one way people oftentimes don’t think about disability, is that people with glasses.
Kind of exist within that visual impairment continuum.
But we don’t think about glasses as being a piece of technology that we use —— right?
And, what is beautiful about glasses is that, there has been so much care put into making them not only functional, but beautiful.
So, when we think about all the other supports that people with disabilities utilize.
Like, really, where does the art come into those?
I remember, maybe, several years ago, Tommy Hilfiger was working on having really well designed leg braces, right, that really spoke to beauty and design.
And, then, your earlier comments about those accessible offices on college campuses that get parked in the basement.
For maybe 13 years, I worked with the Nevada Department of Education, and visited and worked on a, part of an initiative for leadership summit for kids with disabilities, in that state.
And I got to see the office be in the basement and then move to a, almost a temple for student
Where, disability supports was built into this beautifully architecturally designed building, where veteran affairs, math tutoring, mental health support, was all in one really well designed integrated building.
I think we all have that right.
To have spaces and supports that are presented to us in the way which are beautiful.
»» Stephen Kuusisto: Yeah, not only that, it is good social space.
Another question, Diane?
Or other panelists want to weigh in?
»» Diane Wiener: I have several questions here.
I’m going to pick one here.
So, this is from Miso, directed to Naomi and anyone else, feel free to chime in.
“I would love to hear your thoughts how to bring the concept and practices of mutual liberation, disability justice, et cetera, into K through 12 educational spaces.
»» Naomi Ortiz: This is Naomi.
I can start with that.
That’s a deep question.
We’ve got like three minutes.
I will give you an answer, that I can.
So, in working with young people for many, many years, around building disability identity and power, to have a say in systems.
One of the biggest things was really constantly naming what we were doing, as building disability solidarity, disability power, a voice for disabled folks.
And also, reaffirming we’re doing this because we care about each other’s needs.
And this is how we make change in the world that we need to make.
Basically, whatever I would try to model, and then we would try to do, in terms of a discussion, or in terms of problem solving, creating action steps, those kinds of things.
It was a constant reaffirmation and naming, that what we were doing is participating in disability cultural values.
These are values to our community that matter.
Because this is how we make change in the world, and this is how we get to be part of this world that we love.
So, it’s a very quick answer.
But yeah, I would love to chat more about that some other time.
»» Stephen Kuusisto: And we would love to have you chat with us about that some more, guaranteed.
»» Diane Wiener: Does anyone else want to respond to that?
We have a moment here.
»» Stephen Kuusisto: I will say this.
That in Finland, elementary school kids work in groups of four.
And each group of four has a teacher.
And so, the teach —— then the teachers move around from group to group.
The system is designed so that the teachers get to know each student, individually.
Which means their learning style, what their interests are.
As they used to say back in the 60s, what turns them on.
And then, they really model and design pedagogy to work with that student.
How do you get that?
Well you pay your teachers equivalent to, you know, other professionals.
And you invest in public education, not as a matter of sufferance, a word I’ve used more than once tonight, but as a matter of building a strong and vital society.
The United States still can’t figure this stuff out.
And we try to do everything on the cheap.
Though, we’ll claim we spend more than all of these other countries on public education.
We do it really poorly.
And, I will just leave it there.
»» Diane Wiener: Okay so, I’m going to combine two questions here.
»» Stephen Kuusisto: This will be the last one.
»» Diane Wiener: Yes, indeed.
I work for a corporate medical device company in Upstate, New York, says Lindsey, our
leadership is very interested in making the site more accessible.
Currently, it is not.
What are the first steps we should be taking?
And on a related note, there is a comment that someone made about how organizations, in the context of COVID, are making all kinds of changes and rapidly supporting better access and accommodations, working from home, and video conferencing.
And this is proving what disability advocates have been knowing all along.
When we intentionally choose to be inclusive, access barriers may shift.
That is from Darren.
Any comments or thoughts about any of that?
Thank you very much.
»» Stephen Kuusisto: We have one minute, Diane.
So, I don’t think we can get to how to make your website accessible.
I recommend a number of websites, and I can provide that information.
After the fact.
And will do so.
You know, COVID is proving the vulnerability, the precarity, and the fragility of disability in the larger inner mechanism of our society.
Yet, it is also proving what so many of us in the disability community have been saying all along.
Which is that, providing accommodations, creating different ways of approaching the work place, imagining new ways to get things done.
That these are all things, of course, that disability has fostered and pioneered.
So, you know, you can split this one right down the middle.
The disabled are suffering in extraordinary ways, particularly People of Color who are disabled.
And, on the other hand, many people are learning how to model effective alternative ways of
Based on things that have, in fact, been pioneered by those of us who are disabled.
»» Kyle Davis: If I can just chime in really quickly, I believe DJ has something to say.
If you want to give the floor to DJ quickly.
»» Stephen Kuusisto: Yeah.
»» DJ Savarese: Can I say something about the K through twelve question?
It is most possible in K through twelve.
Attention to science curriculum would do so much.
Plants have lots to teach us about mutual and interdependent relationships.
» Stephen Kuusisto: Yeah, no, I think a natural model of systemic engagement and growth is really wonderful.
I agree. I agree.
Well again, I want to thank all of you for taking time to join us, and to give us the opportunity to have a nuanced and dynamic conversation about the ADA@30.
Where we are, and where we have to go.
There is just so much crackling intelligence in this group.
It has just been wonderful to be a modest part of it.
And, again, thank you to the people here who have endeavored to make this possible.
And, as Diane has said, we will respond to questions and queries via the email or Twitter, or whatever mechanism that people have outlined, Diane, any last quick thoughts?
»» Diane Wiener: Yes. I just want to say, I wish we could have gotten to a little more of the questions, but we knew that might happen.
We had many, many, many people here.
Any link that was shared in the chat, as I mentioned, will be given to you, as a participant.
And there are many people commenting, and thanking us.
Various representatives from the University, senior leadership, Steve Bennett, David Seaman, our Dean from the Libraries.
Many accolades coming from across the country, and globally.
Just a very many warm thanks, and gratitude being expressed to all of you.
Thanks, everyone, for coming, and thank you to our panelists, and to you, Stephen, and to our interpreters, and live captioner, and to Rachael and Kyle, for everybody’s involvement in making this a successful opportunity for all of us, have a wonderful night.
»» Stephen Kuusisto: All right, good night, all.
»» Diane Wiener: Good night.