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Elevating Marginalized Voices in the Arts with Claire Jones and Amaranthia Sepia

Claire Jones and Amaranthia Sepia are a Black, invisibly disabled mother-daughter duo who are the co-founders of the grassroots project Sista Creatives Rising. SCR's mission is to help creative, marginalized women and marginalized genders gain accessibility and visibility in the arts to facilitate personal healing. They seek to strengthen their community by increasing the visibility of these artists through virtual events such as workshops, keynotes, and their virtual film event, Art and Mind. If you're joining us here live today, please feel free to drop any comments or questions in the chat, and we'll do our best to have them answered.


Listen to the full episode here.





[00:00:00] Introduction of Claire Jones and Amaranthia Sepia

[00:01:40] Claire Jones and Amaranthia Sepia on what they are most passionate about

[00:04:40] Claire Jones on her childhood

[00:07:21] Claire Jones on instilling creativity into her daughter, Amaranthia Sepia 

[00:09:29] Amaranthia Sepia on the importance of creativity in her life

[00:12:19] Claire Jones and Amaranthia Sepia on their health journeys

[00:27:01] Claire Jones and Amaranthia Sepia on founding Sista Creatives Rising

[00:36:06] Claire Jones and Amaranthia Sepia on wanting to help other artists

[00:47:02] Claire Jones and Amaranthia Sepia on what they’ve learned about each other creating Sista Creatives Rising

[00:53:24] Claire Jones and Amaranthia Sepia on how people can contact them

[00:57:01] Claire Jones and Amaranthia Sepia on their dreams for themselves and dreams for women



Passionistas: Hi, we're sisters, Amy and Nancy Harrington, the founders of The Passionistas Project. We've created an inclusive sisterhood where passion driven women come to get support, find their purpose, and feel empowered to transform their lives and change the world. On every episode, we discuss the unique ways in which each woman is following her passions, talk about how she defines success, and explore her path to breaking down the barriers that women too often face.


Today, we're talking with Claire Jones and Amaranthia Sepia . It's okay. It's okay. A Black, invisibly disabled mother daughter duo who are the co founders of the grassroots project Sista Creatives Rising. SCR's mission is to help creative, marginalized women and marginalized genders gain accessibility and visibility in the arts to facilitate personal healing.


They seek to strengthen their community by increasing the visibility of these artists through virtual events such as workshops, keynotes, and their virtual film event, Art and Mind. If you're joining us here live today, please feel free to drop any comments or questions in the chat, and we'll do our best to have them answered.


So please welcome Claire Jones and Amaranthia Sepia. Hi. Thank you. Hi. Welcome. We're so excited to have you here today and to share your story with our community because it's so inspiring and so wonderful. So, um, we always love to start with the question, what are you most passionate about?


Amaranthia: Yeah, um, wow, you go first. Are you going to go first? Okay, um, yeah, um, so first off, before I answer the question, um, we always like to do a quick, um, uh, self ID is what it's called. And it's for disability accessibility purposes. You just describe yourself, um, for those who are blind or low vision. So, um, I'm Amaranthia and I am a 24-year-old, um, Black woman with long black, uh, locks or dreadlocks and they're off to the side with some silver beads.


I'm wearing a, um, top. It's kind of like a muted Kind of rainbow. Um, I don't know. It's like kind of tartan kind of pattern and just a, uh, a shawl that's kind of like knitted shawl. And then I have, uh, round glasses that are like have a clear rim and I'm wearing big headphones in the back. You can see some fake sunflowers and some pillows and some decor on the wall that's from our time in Japan.


Um, and what I'm passionate about is creating art. About, um, reflecting my experiences, um, of with being someone who is living with invisible disabilities and experiencing, um, my experiences as a Black marginalized artist and using my art to be able to raise awareness about social issues that artists, um, are going through that are similar to what I've gone through and letting people know, hey, this, these things are happening and we need to be seen and heard.


Claire: Yes, hi, I'm Claire, I'm Oranthia's mom, and I am a 61 year old Black woman from the Caribbean, Barbados specifically. I'm wearing red, um, large framed, um, glasses with a gold chain, and I'm wearing a, a black and white kind of geometrical scarf and a black jacket. And it has, I have a red shirt underneath and I am wearing large headphones like Amaranthia and I'm sitting next to Amaranthia on the couch with some flowers in the back and pillows and a Japanese print.


Passionistas: Thank you for being here.

Claire: What was the question again?


Passionistas: What are you most passionate about?


Claire: Well, I am most passionate about, well, my mission is to help marginalize women, activate their light in the middle of the chaos by recognizing the causes and effects of intergenerational trauma. And that is my mission, and that really tells you everything, and this is what, I try to do through sisters by, um, doing creative work and, and, and showing marginalized women and their works and their creativity and That's what I'm passionate about.


Passionistas: That's amazing. So let's take a giant step back and Claire, let's start with you. Tell us about your childhood and where you grew up, what your childhood was like, and was creativity and art a big part of your experiences?


Claire: Um, I would say, now let me put it this way, I was born into childhood domestic violence.


So, my very early experiences were violent and, um, I, I could say I remember the very first Memory that I have is of, um, sitting in, in a, being in a dark room and my mom and dad had separated and my mom was living at an, at, and I was living, we were living in, in a, sharing this house and it was very, very dark and there was a light and there was darkness.


The smell of kerosene oil, a lamp, and there was a candlelight and I heard my mom and my dad outside, and he was beating her violently and I could hear her scream. And that light, but in the middle of all that, in the middle of all that chaos, there was this peace that was there. And I think that's when my sense of creativity started.


I just felt like, um, in that moment, I just felt something come over me and. It translated itself eventually as I grew and under this violent environment, in this violent environment, true poet, true writing. And because I was living in Barbados, it was so beautiful. I had every day, whether it was raining or the sun was shining, there was, everything was organic, the smells, the sounds.


Even the scent of when they were doing, paving the roads, you can smell that, smell that scent of the tar. And I could remember that vividly. Everything was so vivid and so strong. And, but even in the midst of all that, I just, um, still felt, although I was in, in that violent situation, I still remembered all that.


And so when it came time for me to be in school, it came in words. So I was very creative with my words and writing and my dictionary was my favorite book. And I would look up words and, and just write stories. So that's how it started. I was just very passionate about writing.


Passionistas: And how did you instill that passion for creativity into your daughter?


Claire: Wow. Well, over the years, um, as I grew and I came away from that situation and many traumatic and traumatic things happened, eventually when my daughter was born, I had gone through so much that I didn't realize when, when she was born, I was like 36 years old. So, I was under a lot of stress. And so when she came into the world, I didn't know at that time, but she was, because I was under such stress, she came in, her birth, although she was very beautiful and everything, she was crying all the time and she was very stressed out.


So from very early, I started, you know, In her crib, I would put, I learned about putting black and white shapes around her crib. So I would do that. And I would buy toys that were very colorful. Everything around her was filled with color. The books I would buy, I would read to her about different, from different cultures.


From when she was, you know, Even before she came out, I was doing it. She was, we were listening to, she was born to pack a full cannon in the room, in, in the room when she came out. That's the, what she heard and she heard my, um, chanting and then as she grew, as she, one, two, three years old, I just filled the house up with books and with music.


Everything around her was colourful, so I, the first thing she learned was how to write her name because it was so long. And I said, you have to learn to write your name first thing. So she learned to write very early and by the time she got, uh, we went to Japan and we came back, by the time we came back and the bullying started in her life, by then I realized that I could use this as a tool to help her and that's when I started to really help her to utilize that in her world.


Passionistas: And Amarnathia, were you conscious of that shift when your mom started to do that?


Amaranthia: Oh, with the, um when the bullying occurred. Yeah. Yeah. Yeah. Um, because we, I was creating so much, um, from when I was little, I always started off like drawing like, um, like cartoons and Pokemon and stuff like that. And that was just always comforting.


And then when I went to Japan, we were just exposed to so much, um, art, um, being, um, my, my dad got a job, um, got transferred there. And we were just always going to art galleries and festivals and all these different events. And I got into manga and anime and, um, just got to explore so much of the culture there.


And because we're, um, we practice Japanese Buddhism. So it was also learning about my practice as well. And then when I came back to America after, um, Being in public school, not public school, international school, I went to public school here once we came back. The bullying started and I just kept going more and more into my art.


And then I realized that the art was helping me because I always say like pretty much on every podcast, like art was my only friend growing up because the bullying was so severe, especially on the racial trauma, the racism I was experiencing was so bad. And I would have these conversations with my mom about creating.


And I remember people would always be like, you need to be in clubs. You need to do sports. And I'd be like, but all these kids, they want, they're bullying me. They don't really want me there. So why am I going to be there? So, um, I just kept creating. And then we had, um, when I was 11, so it was like fifth grade, I think.


Um, my mom went to my art teacher and said, Hey, this is the work she's creating. This is her story. And he said, I need to make an art show. And I was featured in their first art show at my elementary school. We'd have this weekly meeting called Town Meeting and they would showcase all of, um, like the stuff that was going on in the, in the, um, school community, whatever.


And then, um, they showcased my art. They did just like a whole showcase and all these kids started talking to me and being like, Oh my God, can you teach me how to draw? Like, this is really cool. And I was like, wow, kids are speaking to me really, like for the first time. Like, there were kids I would talk to, but it was just, So many kids who were interested.


So I was, that kind of started my passion for art making and galleries and using art to send them a positive message out. So she realized that and was like, okay, let's hone into that because that's helping you be. Not as shy, um, and helping you learn how to be, to interact. And so that was kind of the beginning.


Passionistas: So, um, if you're comfortable talking about it, could you tell us a little bit about each of your personal health journeys and how that led to Sista Creatives Rising?


Claire: Well, I'll go first. Yeah. Well, as I told you, going back to when Amarathia was born, and it's, When I went to, when I got into college, to Mount Holyoke College, I did work, my work was about understanding intergenerational trauma and I did it through playwriting and directing and in research and I, I went to, I did a research trip.


I'm telling you this so I can come forward and explain it to you. I did a research trip and I went to the slave houses off the coast of Senegal on Gray Island. And I wanted to understand what had caused my dad to be so violent. And so through my research and everything, I landed there and I stood at the door of No Return and I saw where the slaves went through the last before, the last view of, Africa, before coming to the Americas and the Caribbean.


And I was standing there and at that moment I realized this was something big, but I didn't know how quite big it was yet. I didn't even know I was going to have a child in a few couple years later. And so, I came back and my brother in Barbados passed away and he died and that, um, really caused a lot of trauma again.


And then, um, I met my husband and then I graduated and Amaranthia was born and she was crying all the time. I couldn't understand. She had like, um, Rashes, eczema and rashes. I couldn't understand what was wrong when we had to change the milk. So I tried to change to soy and, and then, um, when we went to Japan, she would get massive nosebleeds and I couldn't understand what was happening.


And, you know, she had so many different things going on that I couldn't understand what, why it was happening, but it was happening in me because when she was born, the stress that I carry so, you know, Long from domestic violence, transferred to my daughter, which I didn't realize till when Amaranthia was 13 and she really, really got sick.


And we, we started to figure out what was wrong. She had to see a heart doctor, the high blood pressure, she was getting high blood pressure and all that. And we met this naturopathic medical doctor. The, um, the regular doctors couldn't tell us what was wrong with her. And so we, we found this amazing person, she's still with us today, and she gave, she, Did some cel saliva.


Cel Cel. Like saliva test. Saliva test. Yeah. And she saw that ti cortisol was, um, adrenal glands. The cortisol was flat lined, or almost flat line. Almost flat lined. Yeah. And so she was on the verge of adrenal, um, what do you call it? Addison? Addisons. They were worried about that. So it was like, what the heck is this?


So then eventually I did my own test and the same thing happened. We saw the same measurement. Mine was the same. And the doctor, we were, we were all looking at it and we were like, wait, We're, it's the mirror image. And it was at that time that I realized that is what it was, the stress that I had carried in me from childhood, all the way through, all the stuff that I had gone, it was the underlying problem in my life and I had transferred it to emoraphia through birth.


And then, as I did my research, I found out that that is a real thing with pregnant women. It's a high risk problem. You know, especially in Black women, when they're pregnant. I just found that out, uh, last year. And that is when I started to connect things. And so, Amaranthia was, we've been dealing with this for a very long time.


And then, um, in 2022, when I was, in 2015, I was told I had the potential for myeloma to have myeloma, which is a blood cancer. But I only just recently found out that this is of high prevalence in Black women. In the Black population, and we have like their, um, I was just reading in, where is it? I was reading it today.


The American Journal of Medicine, um, amid growing incidents of MM, Black Americans are particularly at risk. These populations have been shown in prior research that exhibit a two fold higher incidence. Now, I didn't know this. So now I have this and then, um, in January in 2024, after coming out from lymphoma in 2022, I had a bone marrow test because my Numbers were high and they found that, um, it had grown, changed from, uh, what's the first name?


Amaranthia: The marker is called MGUS, M G U S, and so that's the marker for lymphoma and multiple myeloma. Yes. And that's what she had in 2015. And then they said after she did her bone marrow tests in December last year. That, it was, um, I was smoldering, smoldering my, my loma. Yeah. Which is the next stage. The next stage.


But they said they, they think she's might have had this from the beginning. The beginning.


Claire: But I didn't have a born marrow test until January this year. And so as I'm doing more research, I found that one of the underlying factors, they think, they don't even know exactly why this happens yet, but one of the underlying factors is stress.


So, then I realized the most important thing for Emma Rancy and I to do is to manage our stress. So, that's what we do in our lives and that's why this work is so important to us. It helps us with stress. And so, we try not to, um, anything that has stress involved, me. Try to get rid of it, you know, or work on changing it.


So, stress is a major factor and it's also in the Black population because of the many difficulties we go through. So, it's been, it's been a long journey to here.


Passionistas: And what about you, Amaranthia, do you mind talking about your health?


Amaranthia: Yeah, um, well, heading on to that, it's, It's really interesting, like, what she was saying about, um, stress and stuff, because, um, it was, I guess it was like a few months or a few weeks, um, before you got diagnosed with lymphoma in March 2022, like, we, we've started seeing, um, the same therapist, an art therapist, and I spent, um, from like age 13 to like 21, like, trying to find a therapist that understood racial trauma and wasn't like denying my experiences.


Um, so I had to fight to get my diagnosis of, um, complex PTSD, agoraphobia, and panic disorder, and it all is stemming from racial trauma. And now that I look back at it as well, like ableism, and, um, I met this therapist and she told me, this is your diagnosis. And I already suspected I had complex PTSD and agoraphobia, but she told me about the And before I was diagnosed with, um, generalized anxiety disorder, and I kept saying, this doesn't seem right.


This doesn't seem like it encompasses what I've experienced, um, and my past therapist was kind of just denying that. I had to work with my general practitioner to get diagnosed with PTSD because that therapist didn't want to say I had PTSD. So this art therapist really changed my life. My life, I, I, she finally confirmed what I've been trying to fight for and then she said, yeah, your mom has it too.


I was like, oh, okay. Like, so we have the exact same diagnosis. We have the same issue with our cortisol. And then after we both were told, yeah, this is what it is, then she was hospitalized for, um, And that's where she, um, was losing her mobility and, um, and she came back within seven months after the diagnosis, which was supposed to be impossible.


She was like in the 1 percent to be able to walk again after this lymphoma was found on her spine wrapped around like a donut. And that was very difficult because we had to face the panic disorder and the agoraphobia and have to go out and do these things. A little bit. Um, and yeah. A covid surge. Yeah, A covid surge.


And in case people don't know, where the agoraphobia is, is basically you get panic attacks. Mm-Hmm. , and get very overwhelmed and sensory overload when you go out. Especially if you're by yourself and you're just, it's very, you'd rather just stay home because it's so much stress and so much, many triggers.


Mm-Hmm. that, um, occur that it causes. physical health issues. Um, and so I've used my art to be able to tell this story and share my experiences. And, um, with cystic creative sizing, it's been so like imperative to do it because through creating it, we realized, wow, there's so many other people, especially Black and Brown people who are experiencing this as well, and they're isolated.


And it's why we do everything virtually because, um, so many of them can't go out. There are people who are severely ill. Um, and so we just use our health journey and the experience of like, having, you know, having to fight for care, having to fight to get good healthcare, having to fight to be listened to by our doctors and mental, uh, receiving good mental healthcare and to encourage others like, hey, you're not alone, that this is, This is a big issue.


And for so many years, I felt alone because living in a majority white community in New Hampshire, I don't really interact much here because there's so much racism and unfortunately, hatred I've experienced just being a Black woman just walking around. Yes.


Claire: So, yeah. And the other thing I wanted to add about agoraphobia, I have lived my life. I've had to live my life and I wouldn't get here. I wouldn't be here talking to you if I didn't push through all of this anxiety that I, I obviously carried all my life, but I didn't know, I didn't know what it was, you know. But I knew that when I had to do something, I just would go do it and I'll burrow through it.


But I had agoraphobia all that time. Mm hmm. But somehow I was able to go through it, but no one ever saw at the end of the day what happened when I went back to my house. Mm hmm. Or on the weekends when I was alone in my house, um, how I would curl up in the bed and just be, you know, in the fetal position.


And no one ever saw that. And so at 59, when I get lymphoma, I'm learning that I, My, this was my diagnosis. I had panic disorder, complex PTSD, agoraphobia. You know, it means that you can't, sometimes you can't physically go out. But I was going out and still had it. And that was causing stress in my life, right?


Claire: And even now, now that I've come through, I have high blood pressure and I have asthma. And so we, I still mask, I still wear a N95. Every time I go for a doctor's appointment. I have, I, I have developed relationships with each patient relations officer at the hospital, at wherever I go, and I make a call every time I have an appointment, and I have to say, I need anyone in the room to wear this with me.


And people will say to me, Oh, but the numbers are low. Why do you need that? Well, I need it because I have to protect my life because I need it. I cannot afford to get sick and my husband and daughter we still wear masks wherever we go. We don't have we don't have a car, so cabs come for us and the cab company they know I gift them, I gifted them a whole box of masks.


So every time they come they wear masks and you know and it's just I have to manage this every single time. Imagine every time you go for an appointment, you have to negotiate how you're going to enter that appointment. And then when you get to the appointment, there are nurses who still would refuse to deal with you and tell you, like, oh, there's something wrong with you.


No, I'm trying to protect my life because if anything happens to my husband, who's the only one that's working, it would devastate our life. Who is going to take care of us? My entire family and Barbados have died. I'm the only one that's left. We have no relationship with my husband's family. It's just the three of us.


Are you going to take care of me? Are you going to take care of my husband? Are you going to take care of my daughter? So, that is why we wear a mask. And that is why we say that you will see us, um, advocate for, um, um, COVID awareness and COVID cautiousness because it's still here and for people like me, this is why we do virtual work, for people like me and my daughter, we still have to take care of ourselves because guess what, the government is not going to take care of you, they're taking away everything that would help people like us.


So, every man and woman for themselves. That's how we live our lives and it's very difficult and people look at us strangely, but we don't care. We keep going because at the end of the day, we only have us and that's the reality.


Passionistas: Right. Yeah. It's amazing. It's an amazing journey. Um, so how did all of this lead to founding Sista Creative Rising?


Claire: Wow. Um, so, okay, so as, so let me tell you about what happened. I had this course with this, we found this wonderful person, um, and she, I was a teacher and she, we had, we did this course with her. At the end of that course, we found out, we, we had decided that Sista Creatives Rising was going to be the name.


But right at the end of that, it was the 2021, the end of 2021, yes, as we were, as we were tying up, Everything, I was beginning to be very sick. I felt really weak, was getting weak and everything, and I couldn't understand what's going on. So, in December, I learned that my mother had died. I'm estranged from my family in Barbados, and I couldn't get her, and I was sick as well.


So, my mother passed. And that was very difficult for me. So, I ended the course and we were about to, we were about to launch The Sistas. We'd finished the course, we were about to launch it in January 2022. Everything was set to go. And I still was very weak and getting really sick, losing weight. And all of a sudden, I couldn't eat anything, anything that had histamines in it.


Histamines, and it's in everything, and what was the other thing? The acid. Yeah, citric acid. Citric acid and histamines. I would get terrible pain in my stomach. And I couldn't eat anything. I was losing weight. And all of a sudden, um, in the First, this around March 18th, I started to lose my mobility and I'm like, wait, we have to launch Sistas.


What is this? And I knew something was going on. I just kept putting it off because I was worried about the COVID surge. I was worried about not having the money to pay for the bills and all this. My husband and I were going through some difficulty. We were talking about, well, maybe we should divorce and all this.


A lot was happening. And so, I didn't really pay attention. And in the space of six days, I started to lose my mobility. And finally, I was holding a cane and walking with a cane. And I said, Oh, I'll get over this. I'm just going to go look up for some leg weights on Amazon. Put them on my legs and they'll help my legs to move again.


I don't know. Don't ask me what I was thinking. And in the middle of the, I remember a couple of days before it, I really crashed. I went upstairs and I was trying to do something in my office that I had upstairs and I fell and my cat was there and I told her, Oh my goodness, go get Amaranthia for me. Run and go get Amaranthia.


It was early in the morning and she looked at me and I heard her running and she ran and I heard her meep. She went and got Amaranthia. And Amaranthia, I said, well, I fell. Well, that was just the beginning. The next day, early in the morning, I was lying down and I suddenly wanted to go to the bathroom. I tried to get up.


I get up, I'm using my cane, it's dark in the house and I go walk, feel my way towards the bathroom and my bladder broke and I'm like, I don't control my bladder. I'm like, what now? And all of a sudden, I'm getting cold from my toes and it's starting to creep up. So I, oh boy, made it to the bathroom and I crashed to the floor.


And I was like, the coldness kept creeping up, creeping up. Onto my brass and I was like, this is it. But I sat there from four 30 till seven till the sun. I saw the sun rising because I was worried about healthcare, about covid, about who's gonna take care of amaranth, of all these things, bills everything.


And finally. As it got worse and worse, I finally called Emirenthea and I said, I let go. And at that time, I saw the sun coming through the windows, the wind, the blinds. And I was like, isn't this interesting? And Emerenthea came and she, I told her, okay, this is where we get, call the ambulance, give me my health drink, because I'm not sure if I'm coming back or if I'll be coming back, when I'll be coming back.


Make sure I have all my, Blood Pressure Medicine, give me all my, um, documents, call the ambulance. The ambulance came and that was the beginning of this long journey. I ended up in the hospital, they took me to the emergency room and I'm in the thing and I'm like, in the ambulance, I'm like, what the heck is this?


And I get there and after a while, they told me I have this massive growth on my spine. And by the evening, they told me, well, we don't know, The first, they said, we don't know if we can operate on that. We might have to airlift you out of here. I'm like, huh? Where the hell am I going to go? So now by the evening, this doctor appears suddenly by my bedside.


He wasn't supposed to be there, but somehow he's there. And he's a specialist in this particular surgery. And he told me, you have this massive The thing around your spine and you have to go right now. Talk to your family. You have to go right now. We don't have a lot to wait. You're losing your ability to walk.


And we don't know how it's going to come out. So I said, okay, and I talked to them really quickly. And at the same time, I said to Amirathia, you have to take over all the bills and everything. And for that hour I was waiting, I showed her how to navigate, how to manage the house as I'm on the bed, preparing for surgery, how to manage the bills and everything.


That whole hour, and then they took me to surgery. And I remember, I'm outside the door of the surgery, and I said, I don't know where this is going to end up, but you know what? Whatever happens, I've done my best. And I said this to myself, and I'm ready to go meet the Buddhas. I'm ready to go, if that's how it is.


I know I've done my best. So I went in, and they put me down. And five hours later, I wake up, and I've had all these blood transfusions, I've lost a lot of blood and they said you made it and then my legs started to move and it was a miracle and I, and immediately they got me up and started me to walk and everything again, moving immediately and then I was in, had to go to rehab and everything and they brought me all the way Here till now and now, through insurance and everything I had to fight through all that, almost lost our house, foreclosure bankruptcy, everything was almost gone.


And then I suddenly learned of a grant that saved our house for 40, 000 through the government and took care of the house. And we were able to save our house. And so now, assistance came about by lying on that bed. Through that whole time, and I said, I am not going to waste a moment. If I can get up here, out of here, walk again, I am going to create this Sista Creators Rising with Amaranthia.


We talked about it, and Amaranthia said she wants to do a documentary, and that's what we did in the last year. We did the documentary, and it's now available for everybody to see my journey. And that's how Sistas came about. We decided it was now or never. No more waiting. No more waiting. No more self-sabotage.


No more self-sabotage. No more hoping that somebody will come and save me. I'm going to do it myself. And that's my, and I'm going to help other marginalized women like myself. And that's my mission.


Passionistas: Well, I think that's the most beautiful part and I, I'm sorry that you went through all that. Um, but I'm always amazed when people go through something like that and at the other end decide that the, the answer is to create something that helps other people. Yeah. So it's one thing to, it's one thing to take, Ownership of like, okay, I'm going to seize the day. I'm going to live every moment for myself. I'm not gonna, you know, self sabotage anymore. But what was it about the two of you that made you want to take it a step further and help other people?


Claire: Well, before I let Amaranthia answer that, but while I was on that hospital bed, I was I realized this was the moment to go after my dream, which was to create this fun. I remember when I was growing up, my mom always wanted to be a seamstress. And she would, she never finished grade school, that's what they would call it back in the day. And every time she would try, my dad would go on and wherever she was, he would hunt her down and beat her in front of the class and drag her back home.


And she never would get it. So I said, one day I'm going to free my mom and I'm going to get away from here, from this life that is so painful and all this suffering. And I'm going to find a way to help my mom. And I'm going to come back and help her get her home. And I'm going to, I'm going to write and become a well known writer and be able to take care of her and I'm going to help other women along the way.


And so when I was in the hospital, I came up with, I said, you know what, I had already started to Devise it. But when I was in hospital, I decided that when I come out, I'm going to find a way to help marginalized women activate their light in the middle of their chaos, by recognizing it causes an effect of intergenerational trauma.


And so we came up with this fund. Which was, we decided to call the Sista Creative, the Sista Uprising Fund. And that fund is to help, um, be, we raise money through our show, Art of Mine. And then, um, with that money, we are now giving out. Um, at least at first it was seven grants and then one person had joined on when she saw that we were doing it and now there are eight grants of 200 to marginalized women and they showcase, and marginalized genders and they showcase their story and then we tell the, with that 200 they can do art, they can buy medicine, they can, um, you know, pay a bill, you know.


And so now we have, now we just closed it and we have those eight, we are about to select those eight artists to help them, um, realize, um, further their creativity. And so that is what I'm passionate about and that's why I came out and I could help myself but I still felt that it was important for me to help other women like myself because I know what it was like when I was growing up and I didn't have enough money to help me Do what I needed to do and I also saw it with Amaranthia and so I understand from a deep level and so that is what I do.


Passionistas: Did you want to add anything to that?


Amaranthia: Yeah, I think, um, what was interesting was with our first Art in Mind show where we showcase, um, it's a virtual show where we showcase documentaries about marginalized artists. And our first one, like my mom said, was in, um, 2021, and it was called, um, Uh, what was it? Oh my gosh.


I can't remember the name. Yeah, we're already working on our third one. I'm sorry, like blanking. Um, but it was, um, talking about women, femmes, and their mental health during COVID. That's pretty much what's the title. And, um, um, We showcase this documentary and we have, like, therapists speak, we have disability activists speak, talking about these issues within these communities, and they give free resources, um, as, um, after, uh, people watch the documentary, um, and what we do is these artists tell their stories, Um, through, uh, they tell their stories and they showcase their artwork and how they create and why, um, to encourage others.


So it's a very positive experience, um, and we fundraised for BrainArts. org who was, um, became our sponsor for the second show and their organization in Boston helping, um, marginalized artists, mostly, um, Black artists. And, um, that was like a 750 we fundraised. And once my, um, like my mom said, we did the course and then she got sick and.


We had all this whole delay with launching SISTAS. So then when we relaunched last year in January, we partnered with Brain Arts again, and then we partnered with Dancing Queerly Boston. It's another organization helping queer artists who are queer performers and We just were talking of brain arts and I said, you know what, don't fundraise for us again, because, well, that was the plan and they said, this is the time to do your, your grant fund that you've talked about before.


Um, and I said, yeah, you're, you're right. We should, we should do that. And so we did that. And then our goal was to raise 1, 000 and we raised, um, 1, 453 and that became the seven grants. Then recently, um, we had so many delays because like my mom said, she had. They go for her bone marrow tests and all this stuff.


So we finally, like, had the open call start in March and, and shortly after we launched this, um, Black woman, um, who owns this, uh, project called For All Things Digital, she puts out these resources for mostly Black, um, uh, creators. And she said, I'm going to sponsor and give you another 200 grant. And so we reached eight and now, like my mom said, we're, uh, in the.


Process now. Curating. Curating and pulling together finalists, making the graphics and everything. We're going to do a video showcase because they all sent in videos telling about why these funds would help. So we're going to put that together. We're going to have a virtual gallery. Um, it's called Matrix and they're going to showcase in that.


Um, and it's like you get to walk through the gallery and music plays and you get to click on each thing and, um, on the walls and interact with it. Um, so we're really excited to pull that all together and have it ready for June. And um, yeah. Yeah, it's just been a long journey. Exactly. We've been wanting to do this since 2015 and with so many delays and we kept thinking, yeah, is this really possible?


Like, is anyone really gonna wanna help us because it's so hard to get grants and funding. Exactly. Um, Black women, and of course there didn't, Black women really don't get Mm-Hmm. seed funding for things. And so we just had to keep pushing and yes, I think once people kind of heard our story. Um, and we already had that relationship with Brain Arts that just made it so things opened up. And so we're really fortunate that it all worked out.


Claire: I like to say, and I've been saying this, that I view cancer as a gift for me. Cancer was a gift for me because in that very, very dark moment when I was in that deep hole, not on, not on, Not really knowing if what was going to happen. When I started to come out of it, and I could feel my toes, and I could feel my fingers again, because I had to learn everything from scratch, how to move my fingers, how to move my toes, you know, it made me appreciate everything.


And instead of sitting there and thinking that the cancer was this great enemy of life, I started to talk to cancer and say, you know, you're a gift. Thank you. Thank you. You made me find me. And if I hadn't experienced that darkness and that heaviness and of almost losing the only thing that I had, my feet, because when all the violence and stuff happened, I could run.


When I would get into bad relationships I could walk and I could run. When I made friends that I thought were friends and they weren't friends I could run. I could walk, I could jump, I could go on an airplane. I could do everything that was free. And then all of a sudden I wasn't, and it was It was like the universe said, you know what, you're going to sit down here and you're going to listen because I have tried to communicate to you so many times and you would not listen.


So, I'm going to take something that you value from you and now you're going to listen to me. And it was just me and the universe in that bed many, many, many times. And when we were close to losing our home, I remember sitting there and I was, Doing my meditation and chanting and chanting and I was like, oh, we're, as they were closing in saying that they put it in the newspaper and I was like, oh, my God, we are going to be homeless.


We're going to be homeless. How, who's going to take care of me? I can't move. And then one day I called up the mortgage people and I told them, I was talking to this woman, she was a Black woman and I said, don't know what was happening. She said, don't you know about this fund, what it was called?


Amaranthia: Half program.


Claire: Half program. I said, what is that? And she said, you can get 20, 000 or if you're going on foreclosure. And I was like, what? She gave me all the information and I applied. It was a long process. It came and the universe saved us. And we got 20, 000 one time and another 20, 000 and paid off all that COVID mortgages that happened in COVID that we almost lost our house because of that.


And then that made me realize, wait, there really is something that we can't see that works for us, you know, and it's only when something, don't wait, and I, my, my slow, my, um, call to action is get ahead of life before get, get ahead of life before life gets ahead of you. When life is good. Don't think it's good and get out there and party and do it.


Really look at your life and do things that, that gonna really help you so that when something happens, you will have that to fall back into so that you can really lift yourself out of it. And so yeah, so Cancer I see as a gift.


Passionistas: You know, we know a few people who have had cancer that have had that attitude, and they are the ones that we have found that thrive, uh, when it's, you know, when they're on their, during the journey and when they're on the other side of it. Yeah. It's a really beautiful perspective to have. Yeah, What's, what's the one thing that you each have learned from each other in the process of creating this beautiful, um, you know, uh, company, that organization that you've created?


Amaranthia: Man, um, I think something I've learned from my mom is, I mean, when I saw her, um, get sick, And I saw her on the floor and, and how the, um, firefighters had to lift her into the ambulance and just seeing her fight through that.


I mean, I remember when she had, um, she had this brace and it was like a car crash type of brace. So it was like from here down to her torso and she could only look forward. She couldn't look left or right. Just forward. And we always say, like, that's a metaphor for what she needed to do in that moment.


Just look forward, keep going. And she, going through that, like challenged me to, um, understand my disability more and to understand that, um, we're both disabled and that, um, just despite, um, what we were going through with our health to just keep going to, um, not. Give in or give up with all these terrible things that were happening, like, like she was saying, with the bankruptcy and almost losing her home.


Like, somebody just kept telling me, you know, keep going because my mom is still going. Like, everyone told her, like, you're not going to be able to really walk again. You're going to have a 50 percent chance of paralysis. You're not going to be, you're going to have neuropathy for a long time. You're not going to be able to, you're probably going to have to use a walker or a wheelchair.


And I remember having this nurse come in. My mom said, I'm going to walk again in a few months and she said, Oh, you're getting ahead of yourself, you know, your chart, you look at your chart, you know, you need to be in this wheelchair. And they were telling her to sit in this wheelchair and, um, dinner in the wheelchair, have like dinner in the wheelchair.


And she's like, but I'm, I can, I can, I know my body, like, I know that I can do this. And the nurse didn't, yeah. Believe that I told them, put that wheelchair in the garage. Yeah. And so they were trying to kind of put her down and be like, oh, you're not really gonna, this is how it's gonna be. And um, so she just was, I think what's so inspiring about her and her story is that she's gone through so much from when she was a child and she's been able to keep going and not hear what other people are telling her.


Like, no, I know what I'm capable of and I'm not gonna let you tell me what I can't hand or can't do. Um. And so that's just kept, helped me to keep going when I've gone through my own crises, like with bullying and creating my work. Anytime I've been down, she's like, no, you need to get back up on your feet.


You know, yes, take time to rest, but don't fall into that, um, black hole, basically, and, um, keep going with it. And I mean, there's so many times, like, she's just lifts me up and she's done, I've done that for her too. I know you could, there's so many times I've done that for you too. So I feel like, yeah, yeah.


Claire: I think for Amaranthia, when I was in the hospital. My incentive to get out of there was my child and I was like, I have to get, she's not, she's not there yet, there's no one understands her like me, no one understands her disability and people have been saying that, She's, she should go out and do things like a regular person, but she's not a regular person.


She has a disability because she looks okay. People don't understand what she has to go through in the morning just to get up. I have to make sure she has her medicines next to her. She takes a long time to get up. It's a long, every day starts out very, we don't know how it's going to be, you know? And so, I was like, I have to get back to her and I put her in front of me and I was like she's, I have to make sure that she's okay and I said to the universe, universe, give me this opportunity to get back to my child so that I can help her and I will do everything that you want me to do.


I will do everything that I need to do and that's pretty much been it. I've followed through with it and she I trust her, she trusts me and it's wonderful seeing her work through all these problems. She helped me, she, she set up everything in the house because my husband is a contract worker. He could not leave to even come and visit me at the hospital because he would lose money.


So he was the one making the money. And I couldn't visit. Yeah, and through this whole thing, our relationship changed, but it's got stronger and all of us are tight now. And, um, Amaranthia made sure, he made sure that we had the money for me to get my bed, for me to get, there were so many different things I had to get because you have to get all these disability tools.


You know, and, you know, she, she did all that. She started to manage the books. She cooked all my meals. Um, then in the hospital, they told me, you can't, you can't, they don't have almond milk or they don't have oat milk. She and my friend who helped me, who was by my side, I had a friend who was by my side and never left my side. Her name is Angela and I love her to death. She's awesome. And she would help me in the hospital. And she made sure I had oat milk and they would put a little, um, ice box next to me so I can have oat milk because the hospital didn't have that. There were so many things that Amaranthia did and she just commanded everything and I saw her grow.


I saw her grow from me taking care of her to her taking care of herself. And now I feel at peace that if anything were to happen to me, that she would be okay. And that I feel is also a gift from cancer that it gave me that space to let go of my child and let her walk on her own because I was so afraid for her to walk on her own. And so, yeah.


Passionistas: So you both learned how to walk.


Claire: Yes. Yeah.


Passionistas: In different ways.


Amaranthia: That's true. Yeah. It's really amazing.


Passionistas: Um, how can people get in touch with you and see the film and find out more about what you're doing?


Amaranthia: Um, well, people can get in touch with us through our website, SistaCreativesRising.Com. Um, and our Instagram, we, we just reached like a thousand followers, like shortly after we launched the open call for our micro grants. So now it's, We've been getting a lot of support and we're so happy that like people are, um, hearing this story and feeling more encouraged to share theirs. And so, um, it's the same Instagram. It's, um, that's our website. It's, um, Sista Creatives Rising. And, um, yeah, that's where we're most active.


Amaranthia: Um, and you could DM us there. Um, and then with our email, it's info at SistaCreativesRising.Comg. Yes.


Claire: So, yeah, we're, we're developing workshops and talks, if anybody is interested in hearing our story, we're on a virtual platform because we do only do virtual and we are developing talks, workshops. There is a lot of stuff that's coming up.


You can join our newsletter and we also accept tips, um, through our PayPal link, um, because it helps us to keep going and to pay fees for the things we have to do to buy equipment like these mics that we now have. When we started, we just had a couch and a computer and, and, um, we were, the tips that we get, we go and be able to invest in, in equipment, or we are able to go and pay for apps and things like that, or sometimes even buy a meal that could be delivered to us. So it really helps. That's a lot. Yeah. And, um, yeah, you can just go to our website. It's chock full of a lot of interesting things and more things are coming.


Amaranthia: And you can see all the documentaries on there. The documentaries on there, my documentary. Yeah. And our, um, YouTube is up on there too. And, um, on top of that in June, I think, uh, June 7th, it's not fully announced yet, but, um, it's on their website.


It's called Ramp Your Voice and it's a summit for, um, Black disabled activists and, um, they're doing, uh, We're going to have a virtual summit that day, and we're going to be part of it, and it's our first major speaking gig. We've done some speaking gigs before, but this is our first major keynote. And you'll be hearing from us and a bunch of other Black disabled activists just making big changes in their communities, talking about things we've discussed today.


Claire: Exactly. So, yeah. And what's amazing is, you know what's more amazing is though, is it's when we embraced our disability. Yeah. Things got better for us because it's like, we never really realized, we knew we had invisible disabilities, but me becoming physically disabled, you know, closed the circle. And by embracing that disability and seeing us for truly who we are, really It's helping us to find our peace and joy and happiness and, you know, we want people to understand that because somebody's disabled doesn't mean that they don't have something to offer the world. They're amazing, amazing, amazing people with talents galore. You just have to open your heart and your mind.


Passionistas: It's beautiful. So we only have a few minutes left, but I want to ask you one last two part question for both of you to answer, which is, what is your dream for yourself? And what is your dream for women?


Amaranthia: Yeah, for myself, uh, my dream for myself is, well, it's interesting. Right now I'm, I'm working, I've been on SSI, um, since I was 19. So since 2019, and I'm 24 now, and my dream has been become an art director. to create content, um, disability accessible content in virtual spaces, um, like what we do with Art in Mind.


So I'm kind of, I'm kind of doing it already, but I want to expand. And be able to have this as a job, so then I would be able to move off of SSI and be able to really fully support myself and be able to support other women and, um, you know, marginalized communities who aren't, who are also isolated, still masking, still COVIDing, still, you know, And have these disabilities where they can't go out into the world and experience things and have fun.


So I want to be able to create those kind of spaces, um, and work with other organizations to do that. And my dream for women is, you know, with so many different things going on in politics where people, women are losing their rights, they're losing their ability. For healthcare access, they're losing their ability to get disability care, mental health care, um, and with so much violence and stuff going on, I just hope that, um, for more solidarity, for more empathy, and for more, um, people coming together.


And realizing that there's more that we have in common than different, than we have different and, and to embrace those differences as well and be able to support each other and understand like, how can we accommodate each other and make things more accessible so then we can all enjoy life because we only have one life.

[00:58:48] Claire: So, yeah. Yeah, my dream is to be with Amaranthia. A long, long time to be here to see her grow and develop and to do this work together for a long, long time. Yes, and my dream for myself is that I have long to get my book published and have an agent represent me, to have an editor that I can talk to, to work through this long, complicated, multifaceted story.


Claire: And I. I have it, it's written down, but I get so many rejections whenever I send it out because I feel that people don't want to hear a story like mine. And I would hope one day that somebody will give me a chance and give the work that I'm doing a chance because I'd love to publish that book and to bring it to the world, to share my story with women, to show them, look, like Georgia O'Keeffe said, It's not about where you've been, but it's what you've done with where you've been that should be of importance.


You know, it doesn't matter where you've been born. I was born on a little island, 166 square miles. But I had big dreams and I had big love in my heart, even though I was in a violent situation. And I still have that big love and those big dreams for humanity, for animals, for the world. And I just want to be able to go out there and let women see, look, you can do whatever you want to do. Don't let where you were born or your circumstances stop you. Just get up and do it. And I'd like to have my book to support that.


Passionistas: Well, we know that will happen and are so grateful that we have met you both and that we are collaborating with you and we look forward to a long, long, long, long collaboration with you.


Claire: Yes. Same here. We are so glad to meet you two sisters. You're so much. Our stories are similar in many ways, and I really appreciate you finding us and giving us this platform. Thank you.


Passionistas: Thank you so much. And thanks for doing this today. And thanks for listening, everybody. And we will talk to you very soon.


Thanks for listening to The Passionistas Project. Since we're not only business partners, but best friends and real-life sisters, we know how unique and truly special our situation is. We know so many solopreneurs, activists, women seeking their purpose and more, who are out there doing it all on their own. They often tell us that they wish they had what we have.


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