 Good afternoon. Welcome this indigenous people's day. I'm Lane Harwell, program officer at the Ford Foundation and with Esther Grimm here in the front, co-organizer of this session. Variations on a theme, funding, and disability aesthetics. I'm delighted to welcome you, serve as MC, offer a few framing thoughts. My visual description, I'm an almost 40 and I cannot wait. White guy. Average height, lean, blondish, big glasses, suit, tie, green nails, think a tumble, happy, happy fall. I'd like to begin with an access check. We're endeavoring to model access here today. The space is ADA compliant, which is the bare minimum and does not equal access or create equity. It is set up to accommodate the flow of wheelchairs. We have cart services for those with hearing impairments. We'll be using visual descriptions. We will all be using microphones. GIA offered guidelines for accessible presentations. Thank you, GIA. We want this to be a relaxed space. Stretch, move, move the chairs, leave, come back, whatever you want that makes you, that makes you feel comfortable. We also want you to let us know if there's anything that you need to be more, more comfortable if any access needs are unmet, let us know. Please also know that this session is being live streamed through HowlAround and the GIA website, which is making me a little nervous here in the front, to be honest. So before I go any further, I just want to ask if anyone does have an access need that is unmet, or if there's anything we can do to make you more comfortable right now. Okay. Now, the purpose of this session is to explore questions of disability art and aesthetics and how funders can engage in this work. We've invited a number of artists who will share examples of their work and engage in a conversation with all of you, including representatives from Denver's own family theater, Kerry Sandal, and Rebecca Torres. A few framing thoughts. First, the conversation is timely. The field of disability art is getting unoverdue attention. It's moving in exciting new directions, and the opportunity is ripe for funders to engage. Second, GIA and many of its members are engaging in meaningful work around diversity, equity, and inclusion. Disability is critical to and often left out of this work. Third and related, I'm advocating intersectional equity and disability solidarity, for example, that disability would get attention in racial justice funding programs. Similarly, it is important to acknowledge and de-center the whiteness of many disability focused organizations and programs. Fourth, we do not want to get hung up on language or models today, but I am using disability first language, disabled people, rather than people with disabilities, and taking disability as a marker of identity. We are not considering medical models of disability that understand disability as a condition, but rather social models, disability as a social construct, and identity, a culture. Fifth, the session offers an expansive view of disability in the funding sector. Often disability funding programs are limited to conversations about bricks and mortar, to patron services, or to art as therapy. It's important to be thinking about disability at all levels of the organizations that we're funding, their operations and their programs, and it's important that we think about disability in our own organizations, our staff, our disability culture. Finally, the decision to talk about disability aesthetics is intended to shift the focus of philanthropy from what the arts might do for disability, how they might open up, be more accessible, and instead, we want to consider what disability can do for the arts and their role in narrative change. Disability itself is an artistic and generative force demanding new notions of virtuosity and excellence, new modes, and forms of creative production. And our panelists today are part of those explorations. I want to thank the panelists, I want to thank GIA and all of you for being with us, and I'd like to invite Reagan Linton, artistic director of Family Theater here in Denver to give us an experience. Well, good afternoon, everybody. How is everyone? Awake? Do you need to stand or move around a little bit, get your blood flowing, grab some coffee? Okay, great. Well, welcome. We are all, I think I speak on behalf of everybody, we're really excited to be here for this presentation today. Again, my name is Reagan Linton. I am artistic director of Family Theater Company, which is a disability affirmative theater company located here in Denver, celebrating its 30th anniversary this year. Yay. And I have a really special treat for you today. So family produces plays and musicals that are often established works that are re-envisioned using the lens of disability. And a few years ago, we did a show called The Wiz, and the way that we do our shows is that we cast exclusively actors with all different types of disabilities. So that's physical, cognitive, intellectual, emotional, anything that qualifies under the ADA actors and artists who identify as having disabilities as such can audition. So a few years ago when we did The Wiz, we had a lovely young artist come and audition for the role of Juliet, of Dorothy. She completely reworked the entire show for me, so I just think of it as Juliet now. And I just want you to think for a moment of how different stories can be impacted based on the lens through which we see them and the identities that we're employing. So our particular Dorothy happened to be blind and she happened to have a service dog who was her Toto moving through the world. And as she explored getting out of her current world and engaging with this brand new world that she was trying to navigate, she encountered a Tin woman who was a wheelchair user and made of tin and metal. She encountered a cowardly lion who was also blind and she encountered a scarecrow who was hard of hearing. And together they had to interdependently navigate the world of Oz as they were searching for The Wizard. So we have, today we, I would like to invite Juliet Via up who was our Dorothy back in 2006 when we did The Wiz and she's gonna give you a little bit of a glimpse into this world with her performance of Home from The Wiz. Yes, very much so. Again, that's Juliet Via playing Dorothy from The Wiz, so thank you so much Juliet. So that's just a little miniature introduction or a directories taste of what disability aesthetics can be when we potentially envision, envision sometimes some of our same works and materials and such but through a new lens and engaging different artists. So I will be back up here in just a moment to talk a little bit more about family. Just so you know, again family celebrating its 30th anniversary. It's a company that was founded by individuals, artists with disabilities or disabled artists, and is still producing work today and you can find out more about us. It's a projector, yeah. So now I'm gonna turn it over to Carrie to kick us off with her presentation. Thank you Regan and Juliet. My background is in theater and performance and as a disabled person, one of the very few who's had professional training in theater, I'm not sure if all of you are aware of how significant family is the theater company. It's just one of a handful of professional companies of artists with disabilities in the country and even in the world. So they're huge leaders in the field and it's real honor to be sharing the space with them today. So my name is Carrie Sandahl. I'm, as I said before, I'm trained as a theater artist. I'm also a scholar and my area of scholarship is in disability and performance. And I'm also, I guess now an arts administrator. I don't know that kind of happened. So I wear many hats. I teach in the disability studies program at the University of Illinois at Chicago. So I'm gonna wear more of my arts administrator hat today and also informed by my scholarship and artistic practice. So I'm gonna be a little bit of a different perspective today. So I run an arts organization called Bodies of Work in Chicago. It is a consortium of artists and organizations throughout the city of Chicago. Can you advance the slide? Why isn't it working worse? Thank you. So here is our mission. Bodies of Work, a network of artists and organizations is a catalyst for disability arts and culture that illuminate the disability experience in new and unexpected ways. So that's one sentence but it really takes some time to unpack what this means, what is disability art, what is disability culture, what is disability in new and unexpected ways. At the heart of what disability art is, it's an international movement of people with disabilities who are working together to create work from our own experiences, our own bodies, our own minds, our own senses. So it's not about I don't see your disability or I don't think of you as disabled or you can do everything anyone else can do. We are people who want to center our disabled experiences. We're proud of who we are and as Lane said earlier, our experiences are rich and generative and can add new meanings. Disability, whether we like it or not, always signifies. So when we have Juliette who is blind playing Dorothy, her physicality, her experience, the way that she expresses herself, that all creates meaning that is an additional lens through which to see the play and it's one that we value and one that we think is worthy of paying attention to. Okay, next slide. So in Chicago we've developed a guideline for ourselves and so this does not apply to all places. It's a contentious definition but I'm going to just go through what we use when we are making curatorial decisions. We say that it refers to the creative work by people with disabilities that reflects a disability experience either in content or form. So the work isn't always quote-unquote about disability, so the performance that we just saw, the whiz, is not really about disability, but the form necessarily changes by having people with disabilities in the role. Or if you have a form of dance like ballet that evolved with very specific bodies, as soon as you bring someone in a wheelchair into the picture to perform ballet, the form necessarily has to change. So we're interested in artists who want to claim their disability experience and who want to explore it and talk about it and expand it. We also include non-disabled allies whose work explores the disability experience and it's found in all artistic media, from the performing arts, literature, visual arts, comic books, film, design, it can be anywhere. And also the work is shown in accessible spaces with accommodations in place created for disability audiences as well as mainstream. So when Lane at the beginning today talked about how this space had been made accessible, it's really important that when we share our work that it is accessible to the people in our community. And when we say that it's created for disability audiences as well as mainstream, we try to release ourselves from the responsibility of having to explain disability, that it's not about teaching people about disability, it's not that didactic some do, but it's really about exploring who we are in relation to one another as disabled people. Next. So I've been using the term disability culture as well and so I'm going to move into that. Disability art is considered an integral part of both the disability civil rights movement and disability culture, or the self-consciously created community of diverse disabled people in terms of impairment type, race, class, gender, sexuality, any of our other identities we bring to the table, who nevertheless share certain experiences, values and perspectives. So during the disability civil rights movement all the way up to the actions that you see around healthcare and such today, you will find artists there, whether it's drawing media attention, whether it's performing poetry, whether it's performing stand-up or dancing, that the artists are the ones who help create the space for the activists to do their work and to also remind us of who we are. Next slide. So I'm seeing these tendencies across disability art no matter where I am. Disability art tends to engage with political issues relevant to people with disabilities. So even when it's not specifically about disability, often there is a political message. So in the performance again we just saw when Reagan was talking about how the impairment types of all of the characters and how they each had different abilities and by working interdependently they found their way through us. That is a political issue, that's a disability culture value as interdependence. So the values of disability culture in our community work their way into the aesthetic. There's a challenge to stereotypes either overtly or just by our very presence. And we focus on the lived experience of disability, especially those lived experiences that may not be legible to people outside our community. So there are very standard tropes of disability we're used to seeing in Hollywood. We've got the miracle cure, we have the euthanasia story, we have overcoming all odds. You know the ones I'm talking about. And when they represent us, often they don't represent the things that we find most interesting about our everyday lives. So you'll find in plays, in music, you'll find explorations of those experiences and sometimes it's only other disabled people who are going to get it. And that's what I mean. We want to perform for people with disabilities too who might get things that might not be accessible to everyone, sorry. And then we're really interested in developing an alternative aesthetic based on the particularities of the bodies and minds of people with disabilities. So we want to explore not in terms of accommodation and Lane hinted at this as well. This isn't necessarily about making the arts accessible to us. So if we're going back to ballet as our example, if you're using a wheelchair and you go to a ballet class, you would be using the same vocabulary, the same moves, and they would be adapted for someone who uses a wheelchair. That's interesting, but also what's interesting for us is what happens when we start with the bodies we have and create art forms based on the ways we move, the way our bodies exist in the world, the way our senses and our way of moving through the world becomes the beginning point and not as something to be accommodated or adjusted for. Okay, next. Wait, I think that went backward. Maybe I had it in there twice. Next. So how am I doing on time? I have four minutes. Wow. That's good. I wanted to include a few images because sometimes it becomes clear when you have something to kind of hang your hat on with this. So this is an image of a dancer, Lisa Bufano. Has anyone know of Lisa's work? Unfortunately, she's no longer with us, but she performed in a dance concert we had in Chicago called Counterbalance. And she had amputations on all four of her limbs. And in this image, she is on very long stilts that are made out of table legs. So this is, she uses her body and her perspective to create something completely new. It's not something that she's adapting to something that already exists, but she's creating something based on her own imagination, her own body, her own interest in taking everyday objects and transforming them into mobility aids. Next slide. And this was part of a piece called, When Breath is an Ocean for a Wooden Heart. And she performed a piece of it at our concert, but this is an image of when she performed it with Sanchere Giles, who is a non-disabled dancer. But you can see when they perform this piece, Sanchere, who's non-disabled, has adapted to Lisa. So the aesthetic started with Lisa and was adapted by Sanchere. The whole piece was performed with the two of them touching heads, which is part of that theme of interdependence and sharing of balance and space. Next. This is from a dance performance by Kinetic Light. And they are a dance company in New York and the Bay Area and Atlanta. Has anyone seen some of this new work? Okay, good. So some of you are aware of them. So Alice is a woman of color. I don't know if she's African American because she's British. So she's a black woman. And Laurel is a white woman, and they both use wheelchairs. And they develop this piece in which the entire stage is covered with a series of ramps that they designed with a designer. And the ramps allow for the use of space that you wouldn't get in, say, an integrated dance company of people with and without disabilities. This is completely disability-centric. So when you're dancing on a stage, normally you have only one plane and wheelchair users can't do much with that space. You know, we don't get the vertical plane to work with. So these ramps really provided a way to see how their wheelchairs moved and how they could work on balance with one another. And it's a completely unreasonable accommodation, not ADA compliant. So it's taking something that is an access feature but made into an aesthetic piece. So this is a really fantastic piece of work that is touring. I highly recommend that you check them out, Kinetic Light. This is an image from, this is Alice as well. Alice, this image is a portrait of her. She is nude and she's lying on her back and holding one of her upstage leg with her upstage arm. And she's surrounded by colorful lines and it looks like she's on a proscenium stage with blue curtains. And on the left side we have the artist Riva Lair, who is a painter. And this was a piece that she worked on as part of what is called the risk series of portraits. So Riva is a woman with spina bifida, she's short statured, has physical disability, and she tends to paint other people with disabilities. And one of the things that I just wanted to point out about Riva is focusing on her process so that you can see how process is also part of disability aesthetic. So Riva is experimenting in the risk series a way to make herself as the painter as vulnerable as she's asking her subjects to be. Because people with disabilities, we have a long history of being represented without our input in very exploitative ways. Especially those of us who have been medicalized our whole lives. So Riva and the subject, they have long interviews, then they come up with an image and she creates a draft of the image and she has a studio in her home. So she leaves her home and she leaves the subject in her home. The subject can go through her apartment, they can go through any drawer, her medicine cabinet, her closet, her art supplies, her kitchen. Because she feels like that's what she's doing when she's asking someone to sit for her. She's having access to their space. And then the person being painted can do anything to the portrait they want. They could slash it, they could throw paint on it. They can add elements and Alice here has added some imagery onto the painting. So you can see also then even in process how disability art is expressive of certain disability culture values. So I think it's time for me to turn over the mic but I hope that gives you kind of an overview of how we're talking about disability as an aesthetic as well as accommodation. So I'm passing it on to Reagan. Thank you so much, Carrie. And I will just leave this beautiful image up here because I didn't bring images today. So I'll just use that for everything I'm going to say. Again, my name is Reagan Linton. I'm with Family Theater Company. First I'd just like to give out a shout out to my co-leader, Sasha Hutchings, who's our managing director who is also our technology person with sound today. So thank you so much. We all always have room to grow in all ways. So yeah, I think I'm just going to kind of build upon what Carrie has been speaking about and I hope all of you can kind of see me depending on your perspective. I think particularly for the organizations that you are working for, working with, just bringing some of what Carrie talked about into a more practical realm, which is what Family does. So first, and I would just like to say one quick thing about the fact that a lot of the aesthetic work is built on artist creating work around the disability experience. But part of what Family does is also taking work that has been pre-made with no thought of the disability experience, with no thought of disability culture, and adding disability into it, which I think is really important, because often the reasons for exclusion of the disability community come from, oh well, a wheelchair wasn't written into that work. We can't accommodate that. Or oh well, Dorothy wasn't written to be blind, so how do we make that work? So we're not going to consider that artist. And Family is a great example of how you can adapt. You can, if you think outside of the box, you can bring disability into just about any narrative and often find how it enhances the narrative. So I'm going to talk just a little bit about how disability, disability identity, disability culture can enhance and expand the artistry of the work in all of our different forms of art that we're working in, and also can influence and advance the process, which Carrie already touched on a bit. So first, I'd like to talk a little bit about the artistry. I think Family was founded back in 1989. The reason it's called Family is it was originally known as the Physically Handicapped Amateur Musical Actors League. Then they tacked on the Y at the end. It was a bit of a mouthful. While it was identified as, you know, Physically Handicapped, basically it was for anybody that had a disability that wanted to be part of it. However, as we have moved forward, we have also done away with that language because it doesn't really represent what Family is doing anymore. Family does incorporate artists with disabilities of all different kinds. It's not just musical theater. We don't use Handicapped as much anymore. So we've kind of just gone with Family Theater Company. But I think there's also this misconception that what Family does is still just getting artists with disabilities on stage. And really it's so much more complex, as Carrie's already talked about, that we are really building the disability culture, disability identity into the aesthetic of all the work that we do. And kind of I want to talk about where that comes in. So if you think of what any of us as human beings are bringing, we're not just bringing a wheelchair. We are also bringing history. We're bringing experiences. We're bringing humor. We're bringing communication style, movement vocabulary, survivorship, learned and original responses to social interactions, which Carrie and I were just talking about today, some of the things you encounter, comments and things like that, and how that shapes your sense of identity. Rituals, psychosocial spiritual practices, perspectives and more into the room. So as artists of any kind would show up in the room with all of those different comprehensive pieces of themselves, that is also what we're talking about when we're talking about disability culture. It's that it's not just a matter of, oh, you use a wheelchair and you use ramps to get in places. It's how do you move through the world? How does the world treat you? And how does all of that influence your perspective as an artist? So when we work with family, how can that not affect what a person like Juliet or myself or any number of our artists are bringing into the room? So I just want to give you a few different examples of sometimes how that plays into our work. A person's physical movement. So we work with actors who use wheelchairs, walkers, crutches, they walk with a limp, they use cautious steps if they're somebody who is blind or visually impaired, and how this can activate different dimensions of a character. Again, I'm coming from a theatrical perspective, but I think this is absolutely applicable if you are thinking about dance, if you're thinking about performance art, if you're thinking about a variety of other art forms. And these are often things that we see non-disabled artists adding into the work to make them more interesting. If you think about a character like King, or excuse me, Richard III, and the number of actors that have played that role and not had a limp or not used crutches, but they bring that in, or how that can be used in any number of acting exercises because it means that there's more of a story underneath the surface. And that's often what we find is that when we are including our actors or artists with disabilities, that it's not just about the crutches showing up on stage, but it's what does that suggest about this human's experience that adds to the character and gives it a different dimension. And it's also not the norm of what we see, so we question it a little bit. We're curious about it, and again, that deepens often our understanding of a particular character that maybe didn't have that on the surface written into it. So some of the ways in which we've employed this include when we did Side Show, which is a musical about conjoined twins. I actually played one of the twins years ago when I was still young, and my co-actor who played the other conjoined twin did walk. She walked with a limp, but because we knew that we were going to, I couldn't walk, so we knew we were going to have to use a wheelchair. So we shared a wheelchair that was like a very large bariatric wheelchair, and I would push one side, she would push the other, and it added a completely different dimension of how these twins had to move through the world and navigate together and work together or fight each other in moments of conflict in terms of navigating that wheelchair. Also thinking about Jack and Into the Woods a couple of years ago, we cast an actor who had cerebral palsy and used a cane and also a walker at times. And how that would also, as they're moving through the woods, and he's moving and he's trying to catch up to Milky White, and just how that different movement vocabulary created a whole new sense of the character. In addition, communication styles. So thinking about the unique dimension of a character that comes from somebody who has partial face paralysis from a stroke, and maybe you aren't understanding their words as clearly, somebody who uses slow speech due to Parkinson's disease or has a very concrete and straightforward way of communicating because of autism, or is deaf and uses ASL, and how of all of those might impact the character. For instance, we had an actor, Lucy Roussis, who has Parkinson's and played the mysterious man into the woods, and she would come on stage, she speaks pretty measurably and slowly now because of her Parkinson's, and so you'd be hanging on every single word that the mysterious man was going to say when she entered the stage. Similarly, Philip Lameo is an actor with autism who played Mary Sunshine this summer in Chicago. He has a very, very straightforward way of communicating. So Mary Sunshine is the reporter who comes on and kind of comments on the show all throughout. So just how his way of communicating completely affected that character and our experience of that character. And then finally relationships. So how does the relationship and power dynamic of a certain social identity shift how we understand that plot line? So for instance, Aldanza in Man of La Mancha also was myself, a wheelchair user, and how the power dynamic in the rape scene where her captors rape her, how that shifts based on it being a wheelchair user who's already a little bit more vulnerable as opposed to somebody that is standing and warding off her attackers. Or Gaston in Beauty and the Beast who is played by somebody, an actor Stephen Hahn who has spina bifida and has a very long history of kind of the frustration and emotions that have come from navigating the world with spina bifida that have contributed to his kind of railing against the world and so how does that play into Gaston and his villainy in that role. So you can see kind of how all of these different aspects of these humans and these artists come into those characters that they are playing. And like Carrie said, it's not about erasing that identity in the same way that we wouldn't erase someone's gender, erase someone's race. We're just incorporating them thoughtfully into that character and seeing how do they influence it. And then I just want to say a little bit about process. So I think process is usually where we think of accommodation. Like, oh, if we bring in an artist who has a disability, we're going to have to accommodate. And I think a different way to think about it is how is this artist, based on what they need, their unique needs, how is it going to influence and potentially influence for the better how we're actually doing the work as a company, as an organization, how is it moving it forward. I think of like a van Gogh, a Beethoven, a Frida Kahlo. Frida had gone into a training program and been like, I would like to paint from my bed. I'm sure most of those training problems would be like, we don't have beds. We don't have money for beds in the painting room or wherever artists paint. But you know, and yet that's where she created some of her most brilliant work. So if they had said, oh yeah, we can put a bed into the studio, no problem. What would that have potentially activated for a training program? And I think one of the things that we try to do at family is thinking about how do we allow the artist with disabilities to come in and we remove all the other shit that gets in the way so that they can focus on the art, focus on the job they are there to do. This is very challenging because often the artists are also bringing in a lot from the outside world. I often use an example of one of the founders, Terry Westerman, who's a wheelchair user with cerebral palsy. And there was one day that she came in to rehearsal for one of our shows and she had been wheeling right out here on 16th Street Mall, which I'm sure hopefully you guys have had a chance to navigate a little bit. And there was a group of young kids that was hanging out on the mall and they had gone up and they had grabbed her and yanked her out of her wheelchair onto the ground and she can't get into her wheelchair on her own. So she was trying to flag down some police people and they thought she was homeless and on substances and so they didn't come to help her. So she was lying there for quite a while before finally she was able to communicate that she needed some help getting back into her chair. So this happened to her 30 minutes before she came into rehearsal. So obviously sometimes people are bringing in those experiences so it's like how can we make the process easier so that once they get in the door they're not having to spend 10 or 15 extra minutes navigating a bathroom that's not accessible when already they've been dealing with that in the outside world. How can we make sure that the process is seamless for them as seamless as possible so that once they're in the safe space of where we're creating art they can just focus on the art and they're not having to deal with all the other junk. So obviously this comes in many different packages. This can be finding wheelchair accessible housing for an artist that's coming from out of town, something that I'm really passionate about because I've noticed the dearth of accessible housing that often residency programs or development programs have available for artists. It can mean modifying rehearsal times, lengths, breaks according to actor needs. It can be, again, like you saw earlier, being very adaptive, having planned B, C, D, E, F all the way to Z available for when something goes awry. Communication, fostering open communication, we're all going to fail and allowing yourself to fail and not get caught up in embarrassment over that but saying, oh man, we really messed up, we didn't think about this, how can we move forward and make it better? It can be design, accounting for ramps, handrails, whatever somebody may need. And then other accommodations like arranging for interpreters, Braille, large-brand electronic materials, volunteer assistance, all of those things. And really, I think we've found in family, it comes down to time, adaptation, and communication. Those are the three main things, beyond all the other things that you can think of for access and for involving disabled artists, it is time, adaptation, and communication. And if you can really start to focus on those, that is, I think, the biggest thing you can do initially to think about disabled artists and disabled aesthetics. How much is that about my time? Great, perfect. Okay, then I'm going to pass it on to Rebekah for her comments. Thank you. My name is Rebekah Torres and I am an artist in the Chicago area. I am also the founder of Backbones, which is a nonprofit organization that provides resources and peer support for people with spinal cord injury. And I'm also the director of the ReelAbilities Film Festival in Chicago, which is dedicated to sharing the human experience of disability through art and film. Hi, Angie. So I was injured at the age of 13. I was young, a teenager. I wanted to be a fashion designer. After my injury, I thought that that was no longer possible for me. And that changed when I was in high school, when I had a teacher that was very supportive and was helping me figure out how I can make this work. And she helped me find a sewing machine that was adapted that I could use. Assistance in the classroom encouraged me to participate in the art club, photography club, all the clubs in the school. And showed me that there was opportunities in the local community college and the fashion design program. It encouraged me to be a part of that. I did apply for a Harper College that had a really great fashion design program and I was part of that and was able to successfully complete the program with the help of attendance and assistance in the classroom. And also I was able to participate in a program abroad in Paris also with the help of an assistant. So I mentioned these things because those things were very influential for me to be a successful student and to be able to have access to creating and to art, to having those supports and people championing my work. After Harper I went on to the University of Arizona and studied theater arts there. And I had really gained the confidence to be independent and to be able to manage my care on my own without my family and to be able to live independently. After I graduated I returned to the Chicago area where I was doing costume design and dance and theater. And at the same time I started doing a lot of advocacy and disability work in the Chicago area. For the time being I kept both of those things separate, my disability work and my artwork because I didn't really see a way to merge them together or I just didn't feel like they belonged together. And in 2009 I started the non-profit Backbones and when looking for images for our website I realized all the images in stock photography were really depressing images of people with disabilities or they were on the opposite spectrum of that which was people in the sunset with their arms up in the air and it was all super inspiring, you know. There wasn't images of people just being real and having normal lives. So I kind of made that my mission to change the image of disability and to bring real images to the public, to social media, to any way possible to change that image of what people thought disability was. Around the time, oh well through that I started doing exhibitions. I curated an exhibition of photography that documented the lives of people with spinal cord injuries, 21 stories from all over the country and I worked with the museum in the Chicago area. That was our first exhibit that we did that went on to tour to New York and Pittsburgh and Oregon and a couple other places and then we did an exhibit on technology and disability and on adaptive sports and also one showcasing the artwork of artists with spinal cord injuries from around the country. And that was around 2014 where at the same time I became aware of a program that the Craig Nielsen Foundation funded called the Creative Access Residencies and I was able to apply for a residency at the Vermont Studio Center which I attended in 2014 and then in 2017 I did a second one through the Santa Fe Art Institute. Those two experiences were really, really valuable to me because I had a lot of self-doubt of me being an artist and going into these spaces. Usually when I go somewhere I often encounter very early on interactions with people wanting to know why I'm in a wheelchair, what my disability is and it was very refreshing to go into both of these experiences where I'd come across the other artists and the questions I got was, what are you working on today? What medium, what kind of art do you do? And the disability stuff never came up until later in the conversation. So it was very refreshing and it was an opportunity also for me to just have the space and the time to create and to explore different mediums that I wanted to. And like Reagan said, they provided help with me bringing a personal care attendant which I need every morning and night, someone to help me get in my chair and get into bed at night and throughout the day to working on my artwork. And so not having to think about that, not having to think about, you know, the logistics of managing my day with a disability really allowed me to be able to create and to have that opportunity. And again, also around that time, it was around 2014, I met a woman named Maryam Pare, who lived very close to me. She is also a woman who is a quadriplegic and is an artist. She paints with her mouth because she is paralyzed from the chest down. She's a fantastic, amazing artist. We met online and we communicated for almost a year online, even though we lived less than an hour away from each other. And through those conversations, we both found out that we had this really strong connection to Frida Kahlo. And we decided that we wanted to go visit La Casa Azul in Mexico and that we wanted to recreate one of her images. And so we decided to recreate the image Dos Fridas. And I think, yeah, it is up here. And the image is of Frida Kahlo on the left. No, on my right. She's wearing a European dress. And on the left, it is a traditional Mexican dress. And she's holding hands with herself. So Maryam and I decided we wanted to do this, but we wanted to do it in our wheelchairs and recreate this image. And wanted it to be subtle that the chairs were there, but that people had to sort of do a double take and see and notice that those chairs were there. And I created the costumes and we were thinking about, you know, how are we going to get these skirts on? Because this is a lot of fabric. And with the wheelchairs, it's just going to be a mess. So we designed some skirts where we were able to just wrap them around so that they would sit on our lap and we wouldn't need the assistance of other people to sort of get a set of our chairs and all of that. So we made it easy and designed it in a way that was going to be helpful for us to get in and out. And we love doing this so much, so we decided to do more of it. And we came up with 20 images. We only ended up recreating 16, but we wanted to recreate iconic images of art and history where we replaced the subjects with models with disabilities. So here's another example of the girl with the pearl earring, which is a portrait of a woman looking out and she has a head scarf and a pearl earring. And Rena was our model and she is a woman with a facial difference. We can go on to the next one. And this was the Old Guitarist by Picasso. And the original painting is said to be a man who was blind playing the guitar. And so we found Tommy Carroll, who is also a blind musician in the Chicago area, to be our model. And he... I think he looks just like it. One more, yeah. And then this is the Last Supper. This was really fun, logistically, to find all these people to be our models. And every single person in this image has a disability and a different type of disability. So, yeah. It was just really fun to recreate the image of the Last Supper that's been reproduced so many times in different ways, but never, never like this. And we have more. We did Rosie the Riveter and... Oh, gosh. Many, many more. I'm blanking right now. But... And we were able to exhibit this work finally this past September, this last month we just exhibited. So it was five years in the making, and we had 16 images. And accompanying all these images were image descriptions that had things about issues about disability, whether it related to employment, to relationships, to housing, and finding government benefits, and a variety of different topics to help inform and educate people. When we started this project, it was also around the time I met Carrie. And we had a discussion about the disability aesthetics. I don't remember you using that term, but I remember us having the conversation and how much that impacted the way that I thought about my art, because this was a new concept for me. I hadn't really heard of it. And then in this past December, I was also able to be a fellow for the three arts and bodies of work, and had the opportunity to sit in on Carrie's class and learn more about these concepts. So I would say this disability aesthetics, I guess, has been a pretty newer concept for me in my work in the last few years. And I feel like it really has transformed the way that I incorporate disability into my work. I feel like I was trying to fit my art into a certain genre, and now I'm just kind of like doing my own thing, and I hope that other disabled artists do so as well. We're also doing a documentary that's accompanying this project, the Tres Fridas project. And I recently sat with the editor and showed him all my footage, which has been taken all from my wheelchair. I've attached different mounts onto my chair. And I was very nervous to show him the footage because I was thinking he's going to think this is horrible footage. And he made a comment that all the extra stuff that happens before I get the shot, you know, like moving my chair to get in position, he said normally we would take, edit all that stuff out. But in this case, I think you should leave it because it really shows your process and it really shows how you are creating the work. So that is going to add, I think, a whole new element to the documentary and we'll be editing and working on that in this upcoming year. And so looking forward, again, with Backbones, I am hoping to continue to use that platform, not only to help individuals with spinal cord injury and disability, but also, again, changing the way, or changing the image of disability and turning it into, I would like to see disability as a lifestyle and that is something that's othering. And with ReelAbilities, the Film Festival, we just completed our third year this summer and I feel like we're on the map in Chicago. I don't know if you think that, Carrie, but we are now a festival that's getting recognized in the Chicago area which is really exciting. And only about film, I think we're celebrating the work of disabled artists, bringing them in to perform for additional arts programming and also creating opportunities that are going to build our community, a disabled community here, of artists in the Chicago area and hopefully beyond as well. We had a meeting where we all talked about what we needed in Chicago and it was something that they all mentioned that we needed a community of artists and I think that is happening and it's becoming very strong in Chicago. And on a personal level, I hope that I continue to have more time to create my work and more opportunities like those residencies or funding for my work that really allow me to be able to create in a way where I don't have to think about all other stuff. Thank you. We're going to segue right into a Q&A here. Thank you to the artists for their presentations about their work. Are there questions in the audience? Don't be shy. I know we're live streaming but you can do it. Hi everybody. Can you hear me? I'm just thinking back what you said, Rebecca, about how disability aesthetics didn't necessarily enter your mind initially and I'm wondering, if I'm paraphrasing that correctly, but have you had experiences with artists who have disabilities who don't feel like their work is about disability and they say that in their own words and how are those conversations operating within disability culture? I'm not sure if that makes sense. And thank you for the question. Could you just introduce yourself? Oh, sorry. I'm from Three Arts in Chicago. Thank you, Sarah. Well, when I was working on this project I mentioned this to Mariam Antutara who's another one of our collaborators. She's a photographer and also a woman with a disability. They had no clue that this was a term and they were kind of like wowed and excited about it and I think there is a lot of artists with disabilities that aren't, even within our community, they don't really understand or are familiar with this. I think it takes a little bit of a switcheroo in our heads because the goal for us typically has been to overcome our disabilities. So mainstreaming, which has really only been around since 1974, which is incorporating kids with disabilities into public schools, it kind of, in one way it included us but in another way it separated us from one another because there used to be schools for children with disabilities. So that kind of sense of community started to scatter and it depends on what impairment group you're talking about too. But I think that one of the things that I tend to do in Chicago is I'm kind of a scout. I found Rebecca, Esther finds people, I'm really interested in people with disabilities who are making art and who aren't yet connected. There's a strong disability art network already in Chicago but there's a lot of people who aren't connected and one of the reasons why is again, you get a lot of attention for not being disabled even though you clearly are. She overcame to go to Harper College and become a fashion designer. I mean, special interest stories are written about us. How people talk about it since you start to feel your value is as a person who's not disabled even though you clearly are. So the fun thing for me is when meeting other disabled people and have these conversations because it was transformative for me when I connected up with other disabled people it's like, oh I don't have to try to hide, I don't have to try to be something I'm not. My experience is actually interesting so it's very liberating. Now there are artists who are not interested in being part of the movement and so I just say to them, I really, the door's open if you want to have this conversation. Let me tell you about the research we've done at UIC that shows that not only how it opens up your art but how I did this research for the National Endowment for the Arts I can give you the link later but how people's work tends to take off after they join disability culture. They make more connections, they have more confidence, they have opportunities. So identifying doesn't necessarily, you will tend to get pigeonholed as a disabled artist but at the same time we can define it on our own terms. Some people are just never going to want to identify and to them I'm very sad. Yeah and I'll just add on to that. I think there's a lack of understanding that there is a disability culture. I mean that there, that is a thing that exists and I think that largely comes from historically, disability has been an identity that is often defined by those who don't have disabilities and so disability also is something that is about fear, it's about misunderstanding, it's about the worst thing that could possibly happen to you and therefore that prevents pride from being a part of disability and so I think that is something where and I will speak for myself as somebody who acquired a disability and is part of a community of like people with spinal cord injuries where you will find the people who kind of allow themselves after a few years to become part of the disability culture and say oh yeah this is who I am, this is not, you know I don't have to resist it and yet I'll also see people who post 20 years after injury I hate my legs, I hate my paralysis, I hate I just want to walk again, you know so there's a big resistance to the whole notion of disability being a place where you can find pride and that doesn't mean that you have to make your entire life about disability and disability culture and you know it doesn't require that but it just requires an acceptance and a level of essentially self love that I think we as a society are still very much resisting and I see that as a place where artistic institutions can shift by saying no there is pride in this identity, there is pride in putting this up on our walls or on our stages and welcoming and supporting these artists with disabilities to say we want to know more about disability culture it's not something that we just as a whole society are going to resist and push away because it makes us uncomfortable Thank you More questions? Please My name is Linda Earl I'm here from the Jerome Foundation and Art Matters Foundation I wondered if you could I also teach in art school and I wondered if you could talk more about training and the paradigms and training and how it's excluding people in terms of access but also in terms of to those students without disabilities whatever that is it's sort of narrowing their thinking about the world which is not what art school is supposed to be I'll maybe say a little bit about my experience I went through the MFA acting program at UC San Diego and luckily found a very welcoming open environment to me coming in however I also consulted with a number of MFA programs that are looking at incorporating disability and I think again it comes from a place of fear and largely it comes from a place of fear on the part of people, academics that we have elevated as experts and all of a sudden they're facing something that they have no idea they don't know how to deal with it they're confused and therefore they just resist it and they push it away and they also think academics as well as the students that they're somehow going to have to sacrifice their artistry or their approach their exercises that they're doing in the classroom that there's a matter of like dumbing down of if we take an artist with a disability we're gonna have to sacrifice what we usually do the artistic quality of it the rigor of it and that's just not true it is about adapting it sacrificing intention or artistic quality or rigor and so I think that it often has to do with again communication and talking through how can you do the same exercise but shift and really return to the intention of the exercise and then adapt how it manifests and often I have found a lot of pushback around that again if you're talking to like about classical training programs that there's a way to do it and if you don't fit into that way you aren't a good artist and so I think it also it demands that we think more broadly around what makes good art from a theatrical perspective is it just that you can do a fan kick that's as high as everybody else's fan kicks or is there something that's deeper about authenticity and vulnerability that we identify with in the characters that are played and valuing that as much as the technical things that we've come to understand is like the focus of training. There's a new book just out called Casting a Movement and it has chapters that address casting in different identity groups and disability is one of them and I have a chapter with Vicki Lewis and Christine Bruno and so I'd love for you to check out that article because I have done a lot of research on why we are not getting people in the pipeline of actor training. There's a ton of reasons I could do a whole session on that but one that people typically don't think about I'll just say one is that the curriculum has emerged often around rehab models I wrote this in Bodies in Commotion Disability and Performance another book I'm pitching my work but that's okay but some of the movement teaching comes from rehabilitation models like the same people who created rehab for injured workers in the late 19th century efficiency movement were the same techniques that were then adapted for injured dancers and actors and then those techniques came up to be training programs, mask and movement things like that and so when we're in students so in acting classes there's a rehab model built in but unlike the way it started if you cannot be fixed then you fail and so for instance if you're doing mask and movement class the idea of finding neutral we do know everybody has their own neutral but if you're disabled then your body always signifies like I said earlier in excess of what the teacher knows what to do with you because they can't correct you your shoulder that's up a little too high or if you lead with your chin and when I did an acting exercise like this in my mask and movement class we had to wear black unitards and we all had to do a walk where where our classmates gave us information about our bodies like how we were leading with certain parts of our bodies and all of those sorts of things so that you could correct those things well after I did my walk there was silence and the comment then that came after very awkward silence was your walk is so courageous like they just jumped right to meaning because they couldn't say anything there wasn't a way in the curriculum that I would fit and so you can take that same anecdote and apply it throughout the curriculum whether it's in France or theater or the arts that our bodies are so over determined with meaning that it's inconceivable then to how to train us using methods that were created for non-disabled people so thanks thank you additional questions here please could you just introduce yourself thank you so the question is do we need new curriculum do and we need more opportunities to create new curriculum and we also need some inventiveness so the way I got through school was professors who were willing to work with me and change and adapt and then there were classes I just wasn't allowed into and there I've heard anecdotes from students who weren't admitted into training programs because they couldn't do the they were assumed they couldn't do combat choreography or they couldn't do the hip-hop class or there's then curriculum that might you might be able to modify requirements well and also opportunity like I have a friend who was doing an improv class and she had a really hard time because people she said the other students didn't really want to work with her because they had a hard time laughing at someone with a disability because they felt bad laughing at her and so I thought that was really unique because it's like someone said about having the non-disabled students the other students also need that exposure I think too to just wrap their mind around how there could be variations of things and instead of thinking of it as accommodation that things could be different and add variety and add diversity into the classroom and I will just say number one when I was at UCSD there was no class that I didn't do there was no exercise that I didn't do it was all just so most of the curriculum was exactly the same it was just about again getting back to the intention of what are we trying to achieve with this in the first place and then modifying it for the particular body and I think it's also really important that I roll in using a wheelchair but everybody else in my class that may be presented as typical normal you know whatever you want to call the non-disabled body or something they also had things potentially that they needed some sort of modification or accommodation and having me in the class allowed that conversation to take place across the board and I think that's a problem with learning in general is that often that conversation unless you have somebody that visibly shows up with a disability it doesn't start from a place of what does everybody need? Every human is different that could be accommodation for a past trauma that could be accommodation for when I was there and we were doing dialects and it was mostly based on white European dialects and we had people of color that were learning these dialects and it was like hey wait a minute we want to be learning dialects that are appropriate so I think it's about curriculum taking every single individual into account not just the ones that are necessarily presenting with something visible that needs to be thought of in terms of how the curriculum is going to suit them Thank you and so now we just have a few minutes left I'd like to turn the conversation squarely on the topic of the grant maker and what your advice might be or your hopes for philanthropy in advancing disability art and disability aesthetics Final thoughts here I think my final thought is we're living in this woke culture which is awesome I mean it's so wonderful and I think there's a lot of movement around gender around sexual orientation around race and I just want to see disability be part of the conversation partly because disability crosses over all of those other identities one in five people in this country lives with a disability so you can look around this room and probably at least one fifth of us live with a disability if not more so it needs to be part of the conversation and not just from an audience perspective of how do we deal with audience members who come in and request something but how is this going to make our work better? How are these unique artists because of their experience and how does that make our work better and demanding that your organizations saying you're doing EDI work and we want to make sure race and gender and sexual orientation and all of the above are part of the conversation and what your work is focusing around that you're also demanding that disability be included in that mix I agree with all of that and also just the supports that the artists need in order to create their work I think is super important and celebrating those differences and the uniqueness that an artist with a disability can bring to a particular practice the number one thing I can think of is flexibility so I have this artist residency program that I do with three arts that Esther and I designed around particular needs that came up around artists with disabilities in Chicago and one of the main issues that we have with funding is that sometimes the opportunities don't fit what the disabled artist needs and so we designed it around professional development for artists with disabilities and it's flexible depending on if Rebecca was one around what the artist has identified they need for the next step in their professional development it's also important that when you're thinking about diversity each category of diversity has its own issues and its own barriers so I have noticed funding programs say we're opening up to minorities and then they take people with different types of identities and then put them all in the same pot and then judge them against each other they're juried in a way that erases all those differences and so as I said people with disabilities have been mainstream since 1974 and I started first grade in 1974 so you aren't going to find people older than me unless they've acquired a disability later who are going to be in positions of leadership because before 1974 you could deny education there are a lot of kids that did not get educated at all so we still have a ton of barriers to education and so there's a lot of barriers to getting arts training so finding ways to support the development of the artists many of us are in a different place in terms of our training due to the lack of opportunity so you can't necessarily put the resumes and the portfolios up against each other and then think that you're going to use the same criteria because we're always going to like the same three people are going to get the funding all the time the ones who've kind of risen to the top also our discussion today of disability aesthetics and disability culture really would love it if funders could think about supporting that development one of the things that Esther did early on when the decisions we made was that the residency is to support discussions around disability culture so we made the choice that to further the conversation develop disability art so if there were folks who were wanting to apply but who did not identify as disabled they had impairments but they didn't want to be part of disability culture conversations and this wasn't the right opportunity for them so that was a choice and there was pushback so having a clear idea of what it is you're supporting in the disability community and I think those are my things I have more if you want to email me I'm sure as we all do but thank you so much Lane Ford Foundation 3 Arts it's been a great opportunity just please join me in thanking our panelists thank you thank you well