Lisa Sniderman's Story

Career-related training, skills or opportunities I gained from the 2020 Arts and Accessibility grant program

I honed my filmmaking and interviewing skills, as well as mastered the Zoom platform and tech equipment, recording 61 video interviews from home using Zoom conferencing. I used an existing web platform (heysummit) to populate and create a free two-week virtual summit, as well as learned and utilized social media platforms: Facebook Live/Zoom for live talks, Zoom for moderating speaker panels and a live drama therapy workshop, and Facebook for engaging summit participants.

My Story-The 2020 Project

I created and hosted from July 10th-24th 2020, a free two-week multi-media virtual summit: Keep Shining: How to Thrive With Chronic Illness and Limited Energy. Grant funds were used to support the following activities: 1-I engaged the services of a video editor to edit, complete and deliver 30 videos; 2-hired a freelance transcriber on to create and deliver 20 audio transcripts, and 3-I hired a marketing assistant to help market and promote the summit. Living with a rare chronic illness for more than 13 years, my remaining challenges are continuing to create, connect, and be part of community while homebound on limited energy. My summit addressed these, and brought people together virtually to provide an accessible platform and help others struggling with chronic illness and limited energy thrive. Between July 2019 and June 2020, I filmed Zoom conference video interviews from home with 61 expert speakers: 13 thriving artists who battle illness, 10 medical and mental health experts, 15 alternative practitioners, 6 spiritual teachers and healers, 6 thought leaders and others, 7 online support networks, and 4 creative (music, art, drama) therapists. I also held 9 live talks during the summit, moderated a live Drama Therapy workshop; moderated two live speaker panels (each with 20-25 speakers); and engaged the Facebook group community daily during the summit. There were 1,800 registered participants, which far exceeded my goal and expectations! 70 speakers provided their time and expertise, shared valuable information, stories, and their experiences for the pre-recorded interviews, and many participated in the live talks, expert speaker Q&A panels, and answered questions in the Facebook Group. I also hired a videographer to create a summit video trailer!

How my disability informs or influences the creation of my art

As an artist who has been homebound for several years due to a rare chronic illness-a progressive muscle disease called dermatomyositis, not only do I want to find innovative ways to continue to create, contribute as an artist and filmmaker, connect and be part of community, but also feel I still have value, worth, contribution and purpose, despite my illness. I also want to inspire and encourage others like me who struggle with chronic illness and limited energy to thrive as well. I expected that I could do just that, provide an accessible online platform, and foster healing, by creating and holding a virtual summit that brings a vibrant chronic illness community together online, and sharing 60+ videos from expert speakers who share, encourage and inspire with practices, resources, tools, strategies, tips, life lessons and stories.

My story is persevering through this darkness called dermatomyositis for more than 13 years by obsessively turning to creativity to express and as a healing path. But my story and my life’s purpose is also becoming a light in the darkness and a muse, offering support, compassion, inspiration, connection, and encouragement to those who need it most-especially those experiencing transformations: illness, disability, or unexpected life challenges. I use my arts and music to give a voice to, elevate and empower those with chronic illnesses and disabilities to improve their mental health and wellness, grieve and thrive.

Career-related need, opportunity or challenges addressed

This was my first summit. I had a goal of 250-500 attendees, which I surpassed with 1,800 total attendees likely due to promotional efforts by key speakers as well as our own effective and consistent marketing efforts, and keeping the summit totally free and accessible to all. Unlike many virtual summits, which consist solely of watching recorded videos on the participant’s schedule, I envisioned having participants connect, interact and engage during live talks and speaker panels, and daily through responding to posts, sharing resources, tools, support, etc. in the Facebook group, which occurred frequently. Success to me was: 1-actually completing this project while not exacerbating my health issues, since I intentionally took a year to plan and run the summit and worked within my realistic limitations (I was also receiving IVIG (gamma globulin) infusions 5 days each month from August 2019-March 2020!); 2-delegating and hiring out-working with others, like my marketing assistant and hiring a video editor and transcriber, so I wasn’t trying to do everything for the summit all myself, 3-during the summit, having tech support by Myositis Support and Understanding (MSU), whose founder jumped on the first live talk and offered his support when he realized I didn’t have any (and then supported me on all 9 live talks!), and friends in the community voluntarily posting and helping engage the Facebook Group, especially when I couldn’t; 4-securing additional funding through my community sponsor, De Colores Arts; 5-receiving positive feedback from numerous participants that made me realize the summit’s value to them; 6-populating and using an existing web platform (heysummit) to create my summit website, which gave me access to tools like the ability to automate messages, and speaker resources like generated social media banners. If I were to run another summit, because of the energy and resources required, I likely would do half: half the speakers, a max of 30, and half the time (one week), and prepare to have additional administrative support during the summit.

I would not have been able to accomplish the following without the support of the Arts and Accessibility grant: 1-have had 30 of the videos that I recorded edited and completed to comprise the main content for the summit; 2-have been able to work with a transcriber and would have had to transcribe 20 talks myself (which would be a ton of time and energy); 3-would have had to do the marketing all myself if I didn’t work with a marketing assistant, which likely wouldn’t have been as successful; 4-wouldn’t have been able to host/run the summit, engage the Facebook Group and had 1,800 registered participants without these key elements; 5-wouldn’t have been able to hone my speaking/interview skills and help establish myself as an artist and leader with expertise in creativity and healing; 6-participants-people from all over the world wouldn’t have received impact, encouragement, connection and inspiration from watching the 60+ videos as part of the summit and engaging during live talks and in the Facebook group. Many people like me, who live with chronic illnesses, are often isolated and unable to attend in-person conferences, thus it was important to me to make this virtual summit free and accessible to all.

Also, re: the challenge of COVID, what changed was not my intent to have a virtual conference or utilize an online platform, but since so many were still sheltering in place in July 2020, the summit may have had more appeal both within and outside the chronic illness community, accounting for high numbers of participants. I already was homebound for more than a year, so COVID didn’t affect me personally because I already was sheltering. Benefits: with in person-events canceled and rapidly shifting to online, more people have been turning to the internet for virtual ways to create, communicate and connect. I realized the need, opportunity and even responsibility to inspire and encourage more than just the chronic illness community. Participants at home from all over the world may have benefited from the inspirational messages of this summit, engaging and these recorded talks. More people were home and able to attend virtually, and more people were perhaps in need of connecting with and engaging in community, even a virtual community (especially with increased isolation), and seeking new ways to thrive during these challenging times. The online summit, through speaker panels, live and recorded talks and Facebook Group, provided a unique opportunity for a diverse group within the chronic illness community to come together safely and virtually during COVID to share resources, stories, strategies, tools, practices, life lessons and offer connection and support.

How my career has grown as an artist since being provided funding from the Arts and Accessibility program

I learned new skills across the board: 1-I honed my filmmaking and interviewing skills, as well as mastering the Zoom platform and tech equipment, recording 61 video interviews; 2-I learned a ton from and was transformed by the speakers that informed and helped my own journey with health and wellness, e.g., I ended up contacting and working with two of my speakers, one a functional nutritionist, the other, a holistic alternative practitioner; I absorbed and learned so many new strategies, practices, tips, tools, resources and life lessons, that also help my wellness (e.g., mindfulness and meditation, nutrition, yoga, art therapy, music, etc.). I may have a rare illness, but this Project has given me ways to explore how to get my best quality of life, thrive and help others thrive. 3-I had never worked with Facebook live before, so I learned that platform and how to integrate with Zoom; 4-I had not worked with a marketing assistant, so I learned new approaches and tools in terms of organization, e.g., using Google Docs, a master calendar, timing for social media posts, using Google Ads, Google Forms, etc., basically learned more about an area where I didn’t have much prior experience; 4-hosting/running a summit-I had never done that and was point person for all participants, consistently and daily engaging a whole group of people on Facebook Group, coming up with images and questions and posts for engagement, and responding to participants via email, while ensuring the tech side worked, e.g., all videos functioned each day; 5-moderating speaker panels on Zoom, I had never done that, especially with the large number of participants, 15-20 people per panel, and came up with questions to engage the panel; 6-I also created and shared my own Facebook live/Zoom videos including a welcome/orientation and a summary/recap, which I hadn’t done before, and 7-went on about 10 podcasts and radio shows before and during the summit, honing my interview/speaking skills while sharing my story and promoting the summit.

Further, I now have more than 1,800 (and growing) attendees in my chronic illness community network, some of whom I have continued to connect with on my journey both personally and professionally as Aoede, including some attending a recent online workshop; expressing interest in reading my memoir; discovering and engaging with me online over my award-winning music, art, stories, films, and musicals; inviting me to collaborate, partner with them or for future speaking opportunities. I also feel the summit has helped me to establish myself as a disabled artist advocate with expertise in creativity and wellness.

Accomplishments re: networking, reviews or exposure gained in community, new grants, scholarships

After the summit, I continued to engage with one of the speakers I connected with during the summit, Myositis Support and Understanding (MSU), who became a partner for another creative project I had started and then published in 2020, The Grieving Project, a powerful spoken word audiobook that sets the stages of grief to music. This partnership would not have been possible without the summit and this grant. I also received a micro grant in December 2020 from The Pollination Project to print and donate 300 of The Grieving Project CDs to art therapy, music therapy, child life and mental health programs at US hospitals and health organizations, to help engage the chronic illness community to grieve and thrive. MSU has also been helping with that effort. Further, I’ve been leading online workshops for chronic illness communities, on Creatively Grieving Our Chronic Illnesses, using The Grieving Project and other expressive arts to move through grief. MSU has hosted two workshops for members. I’ve also been adapting The Grieving Project audiobook to a full musical. I intend to cast disabled actors, film a staged performance and then share once complete online, to make accessible for the chronic illness and disability communities. In news features, podcasts and interviews for The Grieving Project, I mentioned that I had successfully created and run the summit.