The stories we tell are critical to our understanding of the world. Unfortunately, most of our current narratives exclude certain communities, particularly individuals with disabilities. Our stories are not accessible to them, and in doing so discriminate against this community and deny them the right to express themselves freely. To address this problem, we need to create a space where we can have narratives that are inclusive of individuals with disabilities and allow them to express themselves. Disabled artists carry a different perspective that is incredibly valuable and we must allow such perspectives to flourish and thrive. To address this very issue, the Ford Foundation started the Disability Futures Fellows Program to give disabled artists the platform to share their stories.
This year, the Ford Foundation hosted a two-day Disability Futures Virtual Festival on July 19 and 20, 2021, to celebrate the work done by the Disability Futures Fellows and their collaborators in a series of virtual sessions that highlight their work and discuss critical issues in the disability justice field. The sessions hosted during the two days were full of a diverse array of speakers, who came from various backgrounds and provided insight into the disability space and the challenges that individuals with disabilities face.
One of the unique features of the festival was that it had several features to maximize accessibility and ensure any person could access the content. This meant that for every minute of every session, there was an American Sign Language (ASL) translator present who constantly translated the discussion into ASL. Secondly, there was an audio description feature available, which ensured that described any material being used (such as videos and slides) so that individuals with any visual disabilities could also participate in the discussions. Thirdly, every speaker during their introduction gave a physical description of themselves, describing their facial features and their backgrounds to again ensure anyone with visual impairments could at least visualize the speakers. Finally, all the sessions also had a live transcript that was available, making the sessions accessible to any people with hearing disabilities.
The first session of the festival was on “Disabled Ancestries, Spaces, Histories and Stories.” The session was aimed to explore questions surrounding intimacy and disability and how power and disability are related. The session began with a screening of Hearth: Kitchuns, featuring Kinetic Light. The performance starred Jerron Herman who was going to panelist for the discussion that was to follow and illustrated the experience of individuals with disabilities in navigating the mundane tasks in life. This was followed by opening remarks from Darren Walker, the President of the Ford Foundation, who highlighted the importance of the work being done by the Fellows and the discussions that were going to take place over the next two days. He talked about how stories and art deepen the understanding of the world, and why this understanding is critical to examine. After those remarks, panelists Perel and Jerron Herman were introduced.
They kicked off the discussion by discussing how the kitchen is a space for community and joy. They talked about how the kitchen often functions as the heart of the home and how it can provide nourishment through a visual medium. For the latter half of the session, panelist Perel shared pictures from her work as an artist, that centered around the physical body. Perel showed X-ray images of their body, with medical reports in the background to highlight the oppressive nature of the medical system. They explained how the image represented the normative efficiency that is expected of anybody, and the different perspectives one finds oneself in as a patient. They further showed images that highlighted the normative body standards that are enforced in the world, and how they are oppressive towards people with disabilities.
The second session was on “Disability Portraiture,” where Fellows Riva Lehrer, Alice Wong, Jim LeBrecht, and Rodney Evans discussed how the narratives of disabled people are shown in portraiture, talking about the larger creative space within disabled communities and how it is expressed. The session was divided into two parts. The first part was a conversation between Riva Lehrer and Alice Wong, who started their conversation by talking about their new books that had been launched in the last year. They talked about how the pandemic altered their plans, and how it reminded them of the fragility of life and how they wanted to complete certain endeavors in the time they had. The second part was a conversation among Rodney Evans, Jim LeBrecht, Kayla Hamilton and Denise Jacobson which was moderated by Chi-hui Yang. The panelists talked about their experiences about performing for an audience, and about trying to preserve their authenticity while performing. They then went on to talk about the creative process and what their film meant to them and the process of its creation. They concluded by sharing their thoughts on how art can be made powerful and purposeful, and the value of striving to do that.
The third session of the day focused on “Bodies of Wisdom: Disability Justice x Climate Justice.” The panelists for this session were Patty Berne, Ellen Choy and Crosby, with Rebecca Cokley making opening remarks and introductions. After introductions, there was a short clip made by Sims Invalid was played, which discussed the problems created by ableism, and the intersectionality of ableism with colonialism, racism and capitalism, particularly highlighting the lie of white supremacy. Shortly thereafter, the panelists had a discussion of the clip, talking about how the video serves to counter ableist narratives that look down on impairments or disabilities. The issue of intersectionality in great detail with panelists describing how they work together to exclude people, and why it is necessary to break down antiquated systems of power that have caused large global issues. Following this, the panelists discussed the issue of climate justice and environmental issues are a product of ableist actions, and how they disproportionately impact people with disabilities. Towards the end, the panelists discussed the COVID-19 pandemic, and how the return to “normal” is only a return for able-bodied individuals. For those with disabilities, the pandemic was not a change but just a continuation of life. As panelist Patty Berne put it, “Returning to normal is returning to ableism. Returning to normal is returning to excluding people with disabilities in the same ways that we’ve been excluded. What’s interesting about the pandemic to me is … that it was like a mass disabling event where we see where people were, all of a sudden having to re-evaluate their own risks that they’re willing to take. Talking about the moment that we’re in, we’re in an opportunity to change things.” The session concluded with the panelists discussing future steps, highlighting how disability justice needs to become a more central issue and how each person can help raise this cause and ensure the future is more equitable and fair.
The final session for the day was called “Choosing Ourselves and Each Other: Queer Disabled Legacies, Desires and Dreams.” The session featured Disability Future Fellows Eli Clare, Sky Cubacub, Ryan Haddad, and Leah Lakshmi Piepzna-Samarasinha who explored the legacies and intertwined histories of disability justice that they had faced in their work. They talked about the history of queer communities and how they had come about throughout history through art.
The next day, the first session was on the topic of “Description, Language and Access.” The session was a discussion between panelists Ryan Haddad, Mia Mingus, and Perel, with an introduction from Elizabeth Alexander, the President of the Andrew Mellon Foundation. The central topic of the session was access intimacy, which is defined as the feeling when someone gets your access needs. A useful definition of access intimacy is “access intimacy is that elusive, hard to describe the feeling when someone else “gets” your access needs. The kind of eerie comfort that your disabled self feels with someone on a purely access level.” The panelists started with this definition, talking about how there is very much a spectrum to access intimacy from someone understanding your needs to one where the other person truly understands you and there is complete intimacy between the two people. The panelists then talked about intimate spaces and shared their experiences of navigating these spaces and how to access intimacy played into their interactions. To conclude, the panelists focused on the importance of having a continued discussion of access intimacy and its adoption more widely.
The second session of the day focused on making “A More Inclusive Community: The Power and Presence of Indigenous Disabled Stories.” The panelists for this session were Marcy Angeles, Jen Deerinwater, and Tony Enos, with the session being moderated by Rocío Aranda-Alvarado, and welcome remarks by Emil Kang. To open the session, “Others Like Me”, a song made by the three panelists was played. The panelists followed this up by discussing their collaboration on the song and what it meant to them. This led to a discussion on the intersection between indigenous and disability issues. The panelists pointed out how indigenous people face issues such as having a much higher than average poverty rate, and a lack of digital access (which was particularly critical during the pandemic). They wanted to highlight the compounding of access problems faced by these populations and how there is a lack of attention towards solving their problems. They illustrated the importance of making our institutions more inclusive and getting more invoices into decision-making to resolve accessibility problems.
An important quote from the session that will stay with me was by panelist Marcy Angeles, “Indigenous folks are Native people.
You cannot separate us from our indigeneity. We are one. That’s like taking my leg off and saying that that’s not me. No, no, no.
Whether my leg is on right now or somewhere else, that’s still me.”
The final session of the conference, titled “Memorial to Things We Don’t Know,” featured panelists Jeffrey Yasuo Mansfield and Alice Sheppard, with welcoming remarks from Ezra Benus. The session discussed the feeling of loss that every individual faces at some point in their life – ranging from a loss of a loved one, a community, one’s identity, to a sense of belonging. The panelists talked about how to deal with that sense of loss. In their discussion, the panelists discussed the role of time and space in the memory of things and how this functions in the disabled world.
Overall, the conference provided a great platform for the discussion of issues surrounding disability justice. The Fellows and other panelists shared their work and personal experiences, to highlight how disability justice continues to be a struggle and how it is deeply intertwined with other forms of exclusion such as racism and colonialism. Their insights, I feel, urged every audience member to reflect on these issues and work in their way to help change the world to one that is accessible to every person.
Personally, I really enjoyed the conference as it made me much more aware of issues that disabled individuals face and how despite there being legislation and plans to address those issues, they continue to persist. As someone from India, I looked back to my home country and saw that while in the US at least there are some provisions for disabled individuals, those do not even exist in India (and regrettably in a lot of countries around the world). Furthermore, I really enjoyed the art shared during the conference, and seeing the perspective shared by disabled artists was a great experience. It made me deeply cognizant of the privileges I have as being an able-bodied person and helped me realize how I could potentially become an ally and contribute in helping the world become a more accessible and inclusive space.
- “Disability Futures Fellows”. Ford Foundation, 2021, https://www.fordfoundation.org/work/investing-in-individuals/disability-futures-fellows. Accessed 1 Aug 2021.
- “Access Intimacy: The Missing Link”. Leaving Evidence, 2011, https://leavingevidence.wordpress.com/2011/05/05/access-intimacy-the-missing-link/. Accessed 1 Aug 2021.