We’re excited to introduce you to the always interesting and insightful Amaranthia Sepia & Claire Jones. We hope you’ll enjoy our conversation with Amaranthia Sepia & Claire Jones below.
Amaranthia Sepia & Claire Jones, looking forward to hearing all of your stories today. Can you open up about a risk you’ve taken – what it was like taking that risk, why you took the risk and how it turned out?
Written by Claire:
We took a significant risk to invest in ourselves after our first Art & Mind virtual film event in 2021. I came across a virtual business class over $6,000 and decided this was the moment to break out of stagnation and self-sabotage. Investing so much into myself was extremely scary, not knowing what would be on the other side. At that time, I would constantly experience impostor syndrome since I had very little support from those around me except my daughter, Amaranthia. The most significant decision we made was to do the course together. I knew Amaranthia needed a boost because she was unable to go to college because of her disabilities and chronic health issues. Doing a course that gave the blueprint for how to create a business plan, pitch, run workshops, give speeches, find interview opportunities, network, and gain funding helped us refine our purpose after flailing in the wind for several years. Through it, we realized my story and my daughter’s story are stronger together than separate. So many people who interview today say they never get to meet a mother-daughter duo like us.
It took a lot of time, but we came up with the name Sista Creatives Rising within the first month or so of the course. “Sistas” references the slang used in the Black community, which helps people easily recognize us as a Black women-owned project from the get-go. It also references my relationship with my daughter, how close we are, how honest we are with each other, and our primary audience, mostly disabled creative women of color and femme-expressing folks of color. Finally, “Rising” references our goal to help marginalized artists obtain funding and gain recognition for their work, which is usually undervalued and unseen. The Sistas Uprising Fund came from this idea and my dream to help marginalized women like myself and my Mom, who passed in 2021, who’ve gone through trauma such as domestic violence.
Throughout the course, I continued to experience imposter syndrome and self-sabotage, and I felt like giving up many times. Thankfully, I had my daughter by my side to hold me accountable. In March 2022, two months after we finished the course, I was diagnosed with cancer, and everything came to a halt. At that time, we just launched our website and were about to launch our Instagram. Once I recovered seven months later, we looked back at all the work we did with that course and realized it gave us everything we needed to get back on our feet. The risk was worth the struggle.
Awesome – so before we get into the rest of our questions, can you briefly introduce yourself to our readers.
Sista Creatives Rising (SCR) is a project and concept founded by Black, invisibly disabled mother-daughter duo Claire Jones (age 60) and Amaranthia Sepia (age 24). At Sista Creatives Rising (SCR), our mission is to help creative, marginalized women and marginalized genders gain accessibility and visibility in the arts to facilitate personal healing.
SCR seeks to strengthen our community by increasing the visibility of these artists with our disability-accessible virtual film event, “Art & Mind.” This event uses short films, documentaries, and speaking engagements from professionals such as therapists and activists to raise awareness about social issues these creatives face. We make sure to compensate our documentary artists and raise funds to create grants for artists via our Sistas Uprising Fund Project. As a project (not a non-profit!) founded by a disabled immunocompromised Black mother-daughter duo, we ensure our work incorporates disability justice principles and accessibility tools so the work we present can be enjoyed by everyone.
In October 2023, we held our second Art & Mind titled, “I Know Who I Am! Journeys of Women of Color & Femme-Expressing Creatives.” Brain Arts Org and Dancing Queerly Boston sponsored us. The Mass Cultural Council and The Puffin Foundation provided additional funding. These funds helped us pay for our team, speakers and other services to ensure the event was accessible. In addition, Brain Arts Org helped us pay $200 to our five chosen documentary artists.
We showcased two disability-accessible films: “A 50% Chance of Paralysis: Get Ahead of Life Before Life Gets Ahead of You!” about Claire Jones’ 2022 journey through cancer and spinal surgery expressed through narrative, spoken word, and original music by disabled creative Mel Chilianis, and a documentary with the same title as the event, showcasing five creative women and femmes of color and the healing power of art.
Leading up to and during the event, we fundraised for the Sistas Uprising Fund with a goal of $1000 to develop five $200 microgrants. Through Givebutter.com, we reached $1450+, allowing us to now prepare our call for grant applications to open March 28th – May 5th, with a plan to release seven grants in late Spring 2024.
Have you ever had to pivot?
Written by Claire –
After emergency surgery to remove a diffuse large B-cell lymphoma from my upper spine in March 2022, I lost my mobility. The doctors said I had a 50% chance of paralysis. However, they were shocked after a 5-hour surgery and tremendous blood loss that my feet began moving again. In a week’s time, I was rushed to rehab and started recovering immediately. One of the doctors told me I was in the 1% to walk again after such surgery. Today, close to two years in remission, I am walking again with the help of a cane and getting better daily. Unfortunately, I am now diagnosed with smoldering myeloma, which is a stage leading to the rare blood cancer multiple myeloma, but I am stable.
The last two years have forced me to pivot in every aspect of my life. When I was rushed to emergency surgery, it felt as though my world suddenly disintegrated around me. After years of self-sabotaging behavior, I had no choice but to face myself and take full responsibility for my life. Plus, my daughter, who struggled most of her life with disability, depended on me because I understand her best since we both live with C-PTSD, agoraphobia, and panic disorder. As the days morphed into each other during numerous therapy sessions, oncology appointments, radiation, and chemo treatments, my determination to reclaim and renew my life became a force to reckon with. Instead of seeing cancer as an obstacle, as I did during the stages of mourning, I decided to see it as a gift and as an opportunity to live my life as authentically as possible.
In late October 2022, when I learned I was in remission after seven months of hard and steadfast work, I told my daughter it was time to get back to work on our project, Sista Creatives Rising. We both decided to utilize our vision for Sistas as a vehicle of recovery and healing. In January 2023, we officially launched Sistas. We started networking and building towards our second Art & Mind Show, “I Know Who I Am! Journeys Of Women Of Color & Femme Expressing Creatives.”
We went live with our virtual show on October 5th, 2023, and successfully raised $1,450.00 to create seven $200.00 grants for marginalized creatives through The Sistas Uprising Fund. Our original goal was $1000.00. The first iteration of the pivot to reclaim my life was wildly successful, gaining us a new audience and many positive testimonials. We are in the process of developing our show for 2025.
In your view, what can society to do to best support artists, creatives and a thriving creative ecosystem?
Written by Amaranthia –
The best way society can support artists and have them thrive is to prioritize diversity and inclusivity of multi-marginalized creatives, such as those with disabilities, ensuring they have access to the arts.
On our website, we highlight some statistics that we included in our research as we developed SCR. Despite the fast-paced rise of diversity in America, marginalized creatives are still underrepresented in the arts. “Art & Mind” works to combat that lack of diversity, accessibility, and inclusion while compensating marginalized artists for their work. Artists, especially marginalized artists who fight for their stories to be heard, shouldn’t rely on only exposure.
A study titled “Diversity of Artists in Major U.S. Museums by The Public Library of Science 2019,” states that 87% of artists in US museum collections are male, and 85% are white.
Henri Neuendorf on News.ArtNet.com summarized a harrowing report in the title of his 2017 article, “It’s Official, 80% of the Artists in NYC’s Top Galleries Are White And nearly 20% are Yale grads.”
Unfortunately, this is not expected to improve much. A 2019 report from the Andrew W. Mellon Foundation states, “The cultural sector remains less diverse than the whole of American society—which is on track to become “minority white” in 2045.”
Galleries, art event organizers and directors, non-profits, and other types of organizations shouldn’t just incorporate DEI initiatives but go directly to the artist communities that aren’t being served and heard from and ask what their aspirations and goals are, and inquire about what setbacks they’re experiencing when they attempt to join art societies. They must be prepared to hear things that might make them uncomfortable, especially regarding race, gender, queerness, COVID-19, and how it relates to disability.
Something we primarily focus on is disability inclusion. Despite the majority moving on from the pandemic, the pandemic is still ongoing, according to WHO, and it’s still affecting millions of disabled folks in the world. Disability is multifaceted and can be visible or invisible. We deserve safe and accessible spaces to convene.
Disability includes people like us who can’t leave their homes because we’re immunocompromised, in recovery, chronically ill, or mentally ill. So when you say you have a disability-focused art event, be aware of what disability justice entails – no one left behind. It is crucial, for disability accessibility purposes, to hold virtual, hybrid, or even in-person events that people can attend safely and feel cared for. Artists communities shouldn’t abandon virtual options. For example, if you have a hybrid event, especially if it is focused on disability activism, be aware of asking people at the event to wear masks to protect the most vulnerable and marginalized populations. According to ABC News, even though there are COVID-19 vaccines and treatments, about 1500 Americans are dying from the virus every week.
Ensure that captioning, ASL, audio/visual descriptions, image descriptions, and more are incorporated at virtual and in-person events. Disability – it’s not just physical. People can look non-disabled to a non-disabled person, but they are disabled. And we as a community must protect disabled folks. Art & Mind intends to ensure that marginalized folks feel included. We do our utmost to ensure this by holding virtual and accessible events.
We love to reference The 10 Principles of Disability Justice as articulated by Patty Berne and Sins Invalid, which includes guidance such as, “COMMITMENT TO CROSS-DISABILITY SOLIDARITY -COLLECTIVE ACCESS – COLLECTIVE LIBERATION No body or mind can be left behind.”
Contact Info:
- Website: Sistacreativesrising.com
- Instagram: @sistacreativesrising
- Linkedin: https://www.linkedin.com/company/sista-creatives-rising/
- Youtube: https://youtube.com/@artmindseries9207?si=Xtt1pXydEfduU_BP
- Other: Folks can tip us at https://tinyurl.com/SCRPaypalTips
Image Credits
Image 1: Art, Photography, Collage by Amaranthia Sepia. Collage Newspaper features article by BayState Banner Image 2: (with sunflower drawings) by Amaranthia Sepia Image 3: (of Claire looking up) by Amaranthia Sepia Image 4: “I Know Who I Am” Documentary Artists Graphic by Amaranthia Sepia & Nabila Nugroho (@MaquireMQR) Image 5: Thank you for a successful event! Artwork by Amaranthia Sepia Image 6: (Documentary Poster) Artwork by Amaranthia Sepia. Additional coloring by Linlin Yu (@ly.linlinyu) Image 7: (Sistas Uprising Fund Poster) by Amaranthia Sepia Image 8: Photo by nurse at Concord Hospital, Concord, NH. Sunflowers by Amaranthia Sepia