Happy Hour on the Fringe: Global Pandemics and Art with the Institute on Disabilities
During the global coronavirus pandemic, FringeArts is pivoting the focus of our podcast to checking in with our artists, our audiences, and our community partners during these unprecedented times. Since we can’t gather, we’ll chat remotely about how we respond to this crisis, and how the role of art during a pandemic shifts.
In this episode, FringeArts Marketing Manager Raina Searles chats with three incredible advocates and activists from the Institute on Disabilities: Jamie Ray-Leonetti, Kim Singleton, and Lisa Sonneborn. The Institute on Disabilities was last working with FringeArts in early 2019 for the presentation of their show A Fierce Kind of Love in the inaugural High Pressure Fire Service festival. Listen in on this smart and incisive conversation about the way the Institute has had to pivot their work in the time of the coronavirus, and how the pandemic has intersected with the experience of those living with disabilities. If you’re interested in learning more about policy initiatives at the Institute, visit their website here. To learn more about their Personal Directed Services: Stories Project, visit the page here.
Photo © Jacques-Jean Tiziou / www.jjtiziou.net
Raina: Hello and welcome to Happy Hour on the Fringe. My name is Raina Searles and I’m the Marketing Manager at FringeArts. In the wake of the global coronavirus pandemic, many of us, especially those in arts organizations, have had to reflect on ways to do our work despite dramatic social disruptions. One thing FringeArts is excited to continue doing is connecting our artists and community partners with all of you listening through this podcast. We’re diving into how artists are responding to the pandemic, the intersection between art and public health, and how community partners are working to meet the specific needs of their constituents. You can learn more about what we’re doing at FringeArts by visiting FringeArts.com/covid-19. And as always, enjoy our conversations with some of the most imaginative people on this plane of existence.
Today, we are talking with several representatives from Temple University’s Institute on Disabilities. The Institute on Disabilities learns from and works with people with disabilities and their families to create and share knowledge, change systems and society, and promote self-determined lives, that disability is recognized as a natural part of the human experience. FringeArts collaborated with the institute in the Spring of 2019 for their production of A Fierce Kind of Love featuring an all abilities cast. And today, we’re catching up with their team to talk policy, technology and media during a pandemic. First, we’re checking in with Jamie Ray-Leonetti, Director of Policy. Welcome, Jamie.
Jamie: Thank you very much, Raina. I’m glad to be here today.
Raina: Yeah, we’re glad to have you. So Jamie, just to dive in, can you start by telling us about what your role is with the Institute as Director of Policy and how your job has changed since the stay-at-home orders were initiated?
Jamie: Sure. As the Associate Director of Policy, I have several responsibilities at the Institute. One of my responsibilities is to monitor policy that’s related to disability on the federal, state, national and local levels. Another of my responsibilities is to manage two particular programs that we operate at the Institute. We have two programs, one of them is Person Directed Services and Supports, and the other one is Home and Community-Based Services Final Rule. Those projects are both funded through grants that we receive from the Pennsylvania Developmental Disabilities Council. And both of those are my responsibility because they rely heavily on disability policy.
Now, you asked me how my role has changed since the pandemic. I would say that I am very busy, not that I wasn’t busy before, but I think that things have increased, definitely, since the pandemic. And a big part of that is that, as I’m sure everyone is aware, because of the pandemic, we are dealing with a lot of new federal and state legislation related to COVID-19, and particularly related to making sure that there is relief legislation, not just for people with disabilities, but for all of us who may be negatively impacted by this pandemic.
The other big change that I’ve seen in my work is the way we deliver information to people with disabilities and their families. The two projects that I mentioned, Person Directed Services and Supports and Home and Community-Based Services Final Rule, a lot of that work relied upon in-person interaction with people with disabilities and families prior to the pandemic. And because of the pandemic, that work really needed to shift to an online platform. So we’ve made a big shift towards using Zoom to communicate with individuals with disabilities and families. One of the things that we’ve learned is that by using Zoom, we actually have increased the number of families and people with disabilities that we can reach. And we’ve had better participation in many instances in a lot of the activities that we offer to people with disabilities and families. So that’s been a positive result of the pandemic.
Raina: I’m curious. Since it is meant to be in-person, have you been offering any sort of digital options before this, or was it solely spurred on by the pandemic?
Jamie: Well, I’ll give you an example. Under our Person Directed Services grant, one of the things that we were doing was community forums where people could come together and talk about directing their own services and supports at home. So we would travel around the state and do the forms in different areas, but because of the pandemic, we started doing them online. Now prior to the pandemic, there was a Zoom option where, for example, if we were having a forum in Altoona, let’s say, and a person was unable to travel to Altoona for whatever reason, they could Zoom in and participate in part of the forum that way. But, with going completely online and completely digital, we found that not only did we increase participation, but we also had to change some of the content. For example, a big part of Person Directed Services and the policies around it involve making sure that you’re active and participating in the larger community as a whole. And of course, because we were under stay-at-home orders, that became very difficult in the face of the pandemic. So we had to start thinking about virtual community building. We actually had an entire forum that was focused on how to connect with your community in a virtual way.
Raina: Yeah, I think it was amazing to see that there is increased participation. I was curious about that because I felt like Zoom has become the default for so many organizations and artists creating work. I think I had been to maybe like four Zoom meetings before then. I was also curious if that was your chosen platform because of different disabilities features it might have, or if you had just already been working with it and found that you really liked it?
Jamie: So I can speak from a policy perspective. One of the reasons we chose Zoom is because we work very closely with, one of our partners is an organization called Self Advocates United as 1. They’re known as SAU1, and they’re a statewide group of self advocates from across Pennsylvania. Zoom is their chosen platform. That’s the platform that they prefer of the different digital platforms because they find it to be very accessible, so that’s why we choose Zoom.
Raina: Yeah. Well, so I’d love to go into some of these specific things that you’re thinking about in policy right now. I know one topic is people who have disabilities, but who also have aging caregivers and what might happen if that caregiver becomes ill and can’t provide support for their loved one? Can you talk a little about what that means and how you’re thinking about something like that?
Jamie: Absolutely. The issue of aging caregivers is a big issue, not just in Pennsylvania, but also on a national level. Speaking of it in terms of Pennsylvania, we have many, many people in Pennsylvania who have intellectual disabilities who are on what we call an intellectual disabilities waiting list, which means that they are waiting for services because there are not enough waiver slots for them to get the services and supports that they need at home. So therefore, they have friends or family members who live with them providing their support at home.
Because of that, there was a great concern when the pandemic hit. Oh my goodness, we know that we have these aging caregivers throughout Pennsylvania. What if one of those aging caregivers or multiple aging caregivers become ill with the coronavirus or become ill otherwise and they are suddenly not able to provide the support at home that is necessary for their loved one? What will happen to the loved one? Because what we don’t want to see happen is that, that individual then goes from their family home, or their own home to living in a state intellectual disabilities center, a nursing home, or some other type of large congregate care setting.
So luckily, the Office of Developmental Programs, which is the state, was able to respond to that concern and make sure that there would be potentially emergency funds available if that did happen, so that a person with a disability who was at home and wished to remain at home would be able to remain at home with support. So that was a big thing and that was a big thing that we advocated around. And it’s a big thing that we continue to focus on with some of the state and federal legislation that’s currently pending around COVID. On the federal level right now, I’m sure you know that the current COVID relief package is called the HEROES Act. And that act passed out of the US Senate back on May 15th. Excuse me, it passed out of the US House of Representatives back on May 15th. It now goes to the full Senate where we think that it may take several weeks before it’s debated and voted on. But, that legislation is significant because one of the major components of it is increased funding for these home and community-based services that I’ve been talking about. So if the HEROES Act is passed or some version of it is passed, we’re hopeful and we continue to advocate to make sure that additional funds are in place for home and community-based services, so that if there is an aging caregiver situation, it can easily be addressed, or so that if someone perhaps moved out of a congregate care setting during the pandemic because they were afraid of being exposed to the virus, and now they found that they can live at home successfully with supports and maybe now they want to stay in the community, we want to encourage that. The way to encourage that is to make sure that there are adequate home and community-based services dollars available.
Raina: Yeah, that’s super important. Have you found that there’s been any pushback in that area, or is it just part of the larger bill that is, of course, rolling through all the different legal roadblocks that it may run into?
Jamie: I’m not sure if I would describe it as pushback. What I would say is this, that in the mix of everything, because of course everyone is fighting for dollars and struggling for dollars, oftentimes people with disabilities are overlooked in that struggle. And so, I think it’s our job as Temple Institute on Disabilities, the University Center for Excellence in Developmental Disabilities to educate and advocate with our legislature to make sure that we are not forgotten. That’s not just people with intellectual and developmental disabilities, but people with disabilities and their families across Pennsylvania. I think that’s our responsibility. So one of the ways that we try to do that is by highlighting what’s going on in our community. Some of the things that we found that we had to highlight during this pandemic are things like, lack of personal protective equipment for care partners who provide care in the home. So for example, if you work in a state intellectual disability center and provide care there, the state is going to provide you with personal protective equipment.
However, if you work in Kim’s home, for example, because she lives at home and needs support at home and Kim is your employer. She might not have access to PPE as a person with a disability or a family member. So we’ve been advocating for additional funding for PPE to make sure that family members and people who provide care at home can get that PPE.
We’ve also had to do a lot of educating and advocating around issues like, what happens when a person with a disability ends up in the hospital because of COVID-19? Will they be given the same treatment as someone without a disability?
Raina: Well, I think on that note, we’ve heard a lot about how there are different procedures or surgeries delayed because of the COVID response and a lot of even just like routine services that you might normally go into the doctor’s office for are either being shifted to digital, or being pushed back and pushed to lower priorities. So thinking in terms of this world of care rationing, how does that affect people with disabilities?
Jamie: So care rationing was an issue that came to light almost immediately in the COVID-19 pandemic, not just in Pennsylvania, but again, nationally. Because we’re experiencing a pandemic, each state was required to develop what is called a crisis standard of care. The very first crisis standard of care came out from the state of Alabama. When we looked at that standard, we immediately realized that people with disabilities were being placed at the bottom of the triage line in terms of receiving care when it came to COVID and COVID emergencies. And then we found, as Pennsylvania started to roll out their crisis standard of care that similar things were included in the Pennsylvania standard. Luckily, one of our Developmental Disability Act partners, Disability Rights Pennsylvania, was able to file a complaint with the Office of Civil Rights with regard to the standard of care.
And as a result of their advocacy, which we were pleased to join in, the crisis standard of care has since been amended a couple of times actually and now we have a crisis standard of care in Pennsylvania that we think is much more fair and equitable to individuals with disabilities across the board. It’s certainly not perfect, but greatly improved.
Raina: That’s great. We’re also thinking about if someone does have to be hospitalized because they catch COVID. What happens if they do not communicate traditionally, or if they do need an experienced caregiver by their side, but there is a lot of mandates around keeping them isolated, what does that look like?
Jamie: Well, this is sort of the other big disability policy issue around COVID. We just finished talking about the crisis standard of care and the other big issue that we’ve run into is what we call hospital visitor policies. Now, I and I think some of my colleagues would say that a hospital visitor policy is sort of a misnomer because when we talk about this, we’re not really meaning that someone is going to come to the hospital and visit the person with the disability. It’s not just a matter of keeping somebody company or letting them know that you’re there. What we’re really talking about is someone with a disability who may, as you said, have a complex communication need, or who may not communicate traditionally, or who may have an intellectual disability and not understand, perhaps, what the doctor or caregiver is trying to explain to them. And because of that, they need either a family member or friend who knows them extremely well, or a support service professional or direct support professional to be permitted to enter the hospital with them to ensure that they understand their care and treatment and that communication is effective.
When hospital visitor policies first started to roll out in COVID, the general rule was no visitors, and that includes these support professionals or family members that are key to individuals with intellectual disabilities. So again, that was an area of great advocacy within the disability community across the board. And as a result of the advocacy efforts, the disability community has been successful in achieving modifications to Pennsylvania’s visitor policy, so there is now a directive in the policy that says that, hospitals need to comply with state and federal laws related to disability. So for example, if someone needs a support service professional with them as a reasonable accommodation, they should be able to get that even in the face of COVID-19.
Raina: Yeah. Well, it’s so great to hear what you’re doing. I’m sure there is many more hurdles ahead, especially as this becomes the new normal. And hopefully, with COVID cases going down that will help resolve some of these issues with hospitals and risk of infection. But, it’s so great to hear the work that you’re pushing forward, Jamie.
Jamie: I really appreciate the opportunity to talk with you today, Raina and share some of the policy and other work that the institute is doing. Thank you.
Raina: So next up, we are going to be speaking with, Kim Singleton who is the director of Assistive Technology Programs at the Institute on Disabilities, and diving a little bit more into the tech behind some of the things that we’ve been talking about with Jamie and some of the things that are essential for people with disabilities and their families during this time. Welcome, Kim.
Kim: Hi, Raina. Thank you so much for having me.
Raina: So Kim, can you also just give us a little bit of an introduction into what your work has looked like the past few months?
Kim: So as the Director of Assistive Technology Programs, one of the biggest programs that we work on is, that we are the Pennsylvania’s Assistive Technology Act Program. There is one in every state. In Pennsylvania, we are charged with making sure that any person with a disability of any age, or any person with any kind of functional need, maybe they’re aging into disability or have a temporary disability, that we help them find and explore and discover and get tools and technology from very, very simple things to very complicated things. So we do this work through a lending library. We give demonstrations. We help people find gently used equipment that they need. We do a lot of other things. But, one of the things that happened in the middle of March when we were all sent home was, we really were faced with the idea that generic technology, when we thought about generic technology like smart phones and like tablets, we thought about them as a luxury up until the point of a pandemic. And then for so many of us, they became necessities. Particularly if you’re a person with a disability, a tablet or an iPad, or a technology solution becomes critical.
I mean, for all of us, can you imagine what it would be like if we didn’t have Zoom, or if we didn’t have a way to talk with people? So at that moment, we were like, oh my goodness, we’re now working at home, but we have the same job. How do we continue to do our job when we don’t have access to our inventory and people desperately need it? So we really had to pivot a lot of what we were doing, and I think we did a good job.
Raina: Yeah. So I think, thinking a little bit about that digital divide, I know we’ve… I’ve heard it talked about publicly in a lot of different terms whether that is internet access as kids are starting to learn from home and as people are starting to work from home when normally they could go to the office or something. And so yeah, thinking about what was a luxury and what is now a necessity and how we live, how is the institute working to narrow that gap?
Kim: Oh, well, we have several things happening simultaneously. Within 48 hours of coming home to work, we thought, how are we going to get used equipment to people who need it and what is it that they need? Well, all of our reuse partners across the state were closed. They couldn’t get into their inventories. So we thought, well, people are good and people are kind. And I’m sure that everybody’s at home, and everybody is looking around and they have old stuff at home. And if we could collect it and clean it up, and sanitize it and wipe it, we could turn it around and get it to people who need it. So we started a new initiative called Connect with Tech where we solicit personal donations of gently used tablets and smartphones and we get applications for people with disabilities across Pennsylvania who need those gently used tablets and smartphones, and we make the match.
Actually, it’s pretty grassroots because right now what’s happening is that people are sending their donations to one of our staff member’s houses and he is making sure that it’s completely wiped. He’s sanitizing it thoroughly and he’s shipping it off to somebody who needs it. That’s a really exciting program. That’s an example of pivoting in the middle of a pandemic.
Raina: Yeah. What has the response been from both ends of people donating and people looking for those devices?
Kim: Well, as you can imagine, we have a lot more people who want devices than we have people who are donating devices. But part of that, I think is that people just don’t know. So my hope is that as we get the word out, we’ll get more donations. Everybody, or many, many people have technology that they no longer use. For some people, they give that to their niece or nephew or their younger child. For some people they might box it up and ship it off to get a little bit of money. We’re asking that people consider donating it to the Connect with Tech project through Temple University.
Raina: That’s awesome. We had been just talking with Jamie about connecting with medical professionals. Have you been able to look at how the Institute on Disabilities can help with assisting people with communication-
Raina: … and connecting with medical professionals, whether it’s about COVID or other issues?
Kim: Sure. So TechOWL, Technology for Our Whole Lives at the Institute on Disabilities is the Assistive Technology Act Program and we are charged with helping people with, who are nonverbal or don’t communicate traditionally or have complex communication needs, get the technology that they need and that includes very low tech, what we call lite tech, which is a piece of paper with symbols and words on it. Right away, we’re in the middle of a project anyway to get lite tech communication boards, which are pieces of paper with carefully selected pictures and words on it, so that people can just point to the pictures to make their thoughts known. We had developed this to be very generic. And then COVID-19 became a reality that we all had to deal with, and so we added some specific language to that generic communication board for COVID, things like COVID, things like fever, things like doctor, and added some vocabulary items to that board, printed 1,000 of them and we’re sending them out to anybody that wants them.
One of the things that’s really interesting is that we think about people with disabilities and we think about well, she has a speech disability, or she has a communication disability. When a person is put on a ventilator, they immediately have a communication disability. So one of the purposes of these communication boards is to make sure that they’re available bedside, so that when a person goes on a ventilator, they can have some way to communicate to healthcare professionals and to other people around them. Tablets can be used in that same way. There is a series of different kinds of technologies that can be used to help folks with either longstanding communication disabilities or acute, immediate, because they’ve just been trached, communication disabilities get the technology they need.
Raina: So when looking about at how you distribute these communication boards, are you sending them mainly to people who do have longer term status when it comes to communication, or are you also looking to ship them to hospitals to connect with any patient who is going on a ventilator?
Kim: We have done both. Basically, there is a form on the techowlpa.org website. We just ask how many you need and what you’re going to use them for and we ship them out.
Kim: Another thing that’s happening that’s kind of interesting right now is that, we’re in the process, again, using some of the first COVID money that came out and partnering with Pennsylvania’s Department on Aging, we’re in the process of buying and putting into our lending library 300 additional tablets and 150 additional Chromebooks and my Wifi hotspots for exactly the reason that you were talking about, to narrow that gap of the digital divide.
But, it’s not even so much about having that stuff to lend out to people who need it, but it’s supporting them in their use of it. I have a mother that lives in another state who has a very difficult time with technology. I can imagine if just shipping her an iPad and saying, “Okay, mom, let’s Zoom,” she would have no idea how to do that. So a big part of what we’re doing, and I would even suggest the most important part of what we’re doing is, we’re supporting the people as they use this technology.
Kim: It’s astounding to me, people who have never ever used video platforms like Zoom or GoToMeeting, or any of those platforms and they would say, if you ask them, can you do this, they would say absolutely not. I can’t do this. There is no way. You know what? They figured it out. A lot of people have just figured it out. They figured it out because they wanted to go to church on Sunday. They figured it out because they wanted to see people that they care about.
Kim: And then there is this other group of people that really, really want to be connected and be socially engaged who can’t figure it out for whatever reason. We support them in figuring it out. One way we do that is that, we actually manage the iPads, so that we can load onto any iPad exactly what somebody might need. And then either through a phone call, or through written instructions, or through a video conference, we can take them through the steps of setting it up, so that they can use it. I just think that’s really exciting.
Raina: Yeah. I agree. One of the questions that comes to my mind, there is this pretty dynamic exchange of goods that you’re working on, and you mentioned one of your staff members is turning them around just through his house and shipping them out. When it comes to devices and stuff like that, are most of you working remotely, bringing stuff home, working out of your, whatever your home office setup might be?
Kim: Yes. This order of a first 100 iPads should be, I should be picking it up from Temple, just going and picking up 100 iPads from Temple and bringing them to my living room where I will put them into the system and register them and get them so they can be managed and inventoried and turned around and out into the hands of people as quickly as possible. The new things that COVID has done is it has increased the amount of things like telehealth that people are doing. Or, particularly people with disabilities who are at high risk for COVID, they are going to be using telehealth for a long time. They need to know how to use grocery delivery services. They will have experienced very significant social isolation for a longer period of time than a lot of people. We’re hopeful that these kinds of technologies and the support that they need to use them will help mitigate some of that.
Raina: Yeah. Well, Kim, thank you so much for sharing some of the work with us. I was impressed with Jamie, I’m impressed with you. I think it’s so amazing to hear how your team is just churning out products to keep people connected and make sure that people are staying in touch.
Kim: Yes. Well, thank you so much for having me.
Raina: Yes. So our final guest that we’ll be chatting with from the Institute on Disabilities today is, Lisa Sonneborn, the Director of Media Arts and Culture. Lisa, welcome.
Lisa: Thanks, Raina. It’s really nice to be here with you virtually. I miss being at FringeArts and I miss being at so many of our wonderful cultural spaces around Philadelphia, so counting the day until we can be with you again.
Raina: Yes, we are counting those down as well, for sure. Lisa, what has your role looked like just before and then since everything started rolling out?
Lisa: Well, just before the COVID crisis, I would say, it had been a busy time. There were lots of projects gearing up to go. Some of them I’d love to tell you about today. But certainly, since the COVID crisis there has been a lot of new work in direct response to that. So I’m working from home like my colleagues. Despite having a couple of teens running around the house and a very feisty, furry co-worker, I feel like it’s a productive time. Zoom has a lot of benefits. We’ve been talking about that a bit. In some ways, it’s really allowing me to be more deeply connected with some of the folks that I engaged through my programming. But, I’ll also admit to having a certain level of Zoom fatigue. I think my record so far is six or seven Zoom calls in a day. So it has benefits, but challenges as well. I’m a little fascinated by all the new language that’s cropping up around Zoom, Zooming, Zoom fatigue. Zoombie, I think, is maybe my favorite so far.
Raina: Yes. It’s interesting, I feel like I’ve also seen a lot of shifts to phone calls when people get tired of Zoom, shifting to like, let’s just not figure out technology, let’s just hop on the phone for a quick chat, which I think I’m also a fan of because I think my I’m in the like wonky internet world, so I don’t know if it’s just a lot of people being on the same apartment WiFI, or everyone’s active at once. But I’ve also been like, it is actually easier for me to just hop on the phone. I feel like I’m tired both from being on Zoom and having all these conversations, being on screen and everything, but then also just from having to deal with all of the technology and is someone frozen, and is it my WiFi or theirs? I’m figuring all of those battles out.
Lisa: Yeah, I’m having exactly the same experience. Definitely by the end of the day, if I can switch out a Zoom call for an old school phone call, I do that.
Raina: So diving in a little bit, we started to talk with Kim a little bit about how social isolation is not new and how to bridge those gaps. So I’m curious, in the world of Media Arts & Culture, what kinds of things are you working on to help bridge that same gap and help keep people connected?
Lisa: So there are a few projects that we’re working on. One of the things that we’re doing in direct response to the COVID crisis through our Media Arts and Cultural Programming is working with community partners to collect stories about how COVID is really having an impact on the community. The work is being supported by the Independence Public Media Foundation. The Foundation was particularly interested in how COVID was affecting underserved communities. And so we’re really grateful to them for recognizing the importance of including people with disabilities in that conversation.
Our goal is to collect 20 to 25 stories, a collection of stories that represent the intersectionality of our local disability community. The way that we’re doing that is by partnering with local service and advocacy organizations as well as some arts partners who have established relationships in the disability community. Let’s see, I hope I get them all. Our partners include Liberty Resources, The Center for Creative Works, Art-Reach, The Nationality Services Center, Hands Up and the Chinatown Disability Advocacy Project, also People’s Light in Malvern.
They’re all going to reach out to the people that they support and find a first person story about COVID. What we’re hearing from the partners already is that there are some really devastating stories. We’re hearing stories about food insecurity, about isolation, inequities in education, real fear about how people’s lives are valued in healthcare settings, the impact of COVID in nursing homes. Jamie and Kim were addressing some of those concerns earlier.
We’re also hearing some stories about new opportunities that technology is creating. So some people are expressing the feeling of feeling we’re connected through technology. Workplace is suddenly becoming more flexible and that is allowing people with disabilities to feel more included and maybe even potentially opening up employment opportunities where there hadn’t been before. So we’re excited to see where the story gathering takes us, the kinds of stories that will emerge. The stories as a collection will be available through the institute’s website and social media probably starting in August.
Raina: That’s great. Thinking about connecting with everyone and gathering those stories, is it also a coordinated response on how to address those issues through some of the other legs of the Institute on Disabilities or is it mostly like story gathering, you’re just really putting together a fuller picture?
Lisa: The Institute on Disabilities supports people with intellectual and developmental disabilities and their families. That tends to be where a lot of our work is focused, so we’re working with community partners who essentially have a wider reach, so that we’re sure, again, that we’re reaching the true intersectionality of the community. So Hands Up, for example, will be working with the deaf community in Philadelphia. Nationality Service Center will likely be working with immigrant communities. The Chinatown Disability Advocacy Project will be working with families in the Chinatown community. I know they’re particularly interested in stories around education.
It’s a lovely opportunity for us to do work that we’re passionate about, but also engaging with partners that we haven’t always had the opportunity to collaborate with. I think it helps us both widen our reach and build some new relationships that I hope we’ll have a lot of potential to carry forward.
Raina: Well, I’m also thinking this is a great time, for example, at FringeArts we are shifting the Fringe Festival to be primarily digital. We had a Digital Fringe component for a few years now and we’ve seen it grow, but I think at most it’s been around 25 participating artists in Digital Fringe. This year, we’re looking at a festival that is maybe 90, if not 100% Digital Fringe. And so looking in that world, have you seen art that’s more accessible or also on the performer’s side, if there are any performers with disabilities able to create art that’s accessed more by people?
Lisa: So you raise a really good point. Once theaters and cultural spaces began to close due to COVID, people began to look for ways to produce work to keep their audiences engaged, yes. So we saw a lot of digital content coming from local theaters and cultural spaces. It’s been really interesting to watch that work develop. I mean, on many levels it’s really exciting. What’s particularly exciting about it is its potential to reach new audiences, especially people with disabilities who very often face obstacles to accessing the arts and accessing cultural spaces. What’s been a little frustrating for me to see is that much of that content is inaccessible. So with that in mind, one of the things that we’re doing at the institute is a small pilot project that we’re calling, Punch Light. We’re commissioning a series of four minute long works by local artists with disabilities. Some of the artists are working independently. Some of them are collaborating with established local artists. All of the work in our umbrella of Punch Light is responding to the theme of resilience. It’s been really exciting to start this process.
The work celebrates the artistry of the disability community, certainly. But, we’re hoping that it will also model some of the best practices in digital accessibility. So an example would be a dance piece by a local artist named, Dawn States. She’s done a beautiful piece that she has choreographed and performed in a lovely outdoor space that’s being audio described. We have a spoken word collaboration with Michael McClendon who was one of the artists who performed in A Fierce Kind Of Love, and a percussionist. That piece will be captioned, audio described and ASL interpreted. So we’re hoping that this work once it’s made public will really not only lift people, engage the community, but also show cultural presenters and cultural organizations that this kind of content can be made accessible. And that in doing that, they can widen their reach and hopefully, build a new and even more inclusive audience.
Raina: Yeah. I think that is one of the amazing things that I know I’ve seen is that in some of our other episodes we’ve talked about this shift to digital art in terms of reaching people geographically or financial accessibility. I think it’s one of the questions that’s put on the back burner around people with disabilities because it was kind of like, oh, well, it’s digital, so you don’t have to leave your house, so that’s accessible to people who maybe have physical disabilities and whatnot. I think that doesn’t address things that might feel as simple as captions.
But, I was trying out the Goggle Hang Out live captioning and I was like, it’s half there, but it’s not clear. Like, if I didn’t know what they were actually saying then I would be confused at several points. And so, what are the ways that we can prioritize that and actually if we’re not spending money on some of the usual in-person costs that we incur, how can we shift those finances to better reflect we’re finding that through a third party captioning system, hiring an actual person to do captioning, and doing audio descriptions and whatnot, and really following the guide that you’re laying out of how to build accessible art knowing that it shouldn’t just be put on the back burner because it feels like we’re being more accessible in some way?
Lisa: It’s one of the things we appreciate about Fringe is that you are thinking about those questions. That’s always really exciting for us to hear. I think it starts with intentionality. I think for lots of cultural presenters is knowing where to start can be a little bit overwhelming. But, I think if you approach your work with intentionality and understand that maybe there is a little bit when you’re creating digital work of trial and error.
Certainly for us as well through our Punch Light Project, each piece has its own needs in terms of accessibility, so we’ve been trying to figure out what works best to support each artist’s work. But, because we come to the work with that question, it’s actually exciting to find the solution. We’re really happy with the solutions that we’ve been finding so far. So again, I think thinking about the audience we want to engage, approaching the work with that kind of intentionality is a great first step.
Raina: Are there any digital art pieces, and maybe it’s some of the ones that you’ve already been commissioning, but have you seen any digital work so far that you have just been really, really impressed by, or who you think are also helping to pioneer their way in this?
Lisa: Yeah, I think there are some incredible samples of artists and arts organizations from around the world who’ve been pioneers in making inclusive and accessible work. One of my favorites is Back to Back Theatre, an Australian company that’s performed in FringeArts a couple of times. A little close to home, I think Kinetic Light, the dance company led by Alice Sheppard is pretty extraordinary. Their work, which is compromised entirely by a company of artists with disabilities, is fully accessible and it’s really, really breathtaking. I also think they push audio description to the next level.
More locally, Art-Reach is a great example of an arts organization that’s committed to making its digital content fully accessible and also helping other arts organizations do the same. And People’s Light in Melbourne has been working with the institute to implement smart caption glasses, which is an always on captioning solution that makes live performance accessible for people who are deaf or who experience hearing loss. So I think the local interest in cultural accessibility is clearly growing. Some of the responses we’re all developing in relation to COVID have the potential to be long term game changers in the way people with disabilities access the arts.
Raina: Fantastic. Thank you so much for sharing. Thank you so much to everyone for joining us on this episode of Happy Hour on the Fringe. You can find FringeArts on Facebook, Twitter, Snapchat and Instagram and download the FringeArts app, or just go to FringeArts.com. You can learn more about the Institute on Disabilities at https://disabilities.temple.edu/. To everyone on our call and to all of our listeners at home, stay safe, stay well, and since it’s finally summer, stay cool.