Today we’d like to introduce you to Lilac Maldonado, Ducky Jones, Sade Musa, Laurent Corralez and Nami Hatfield.
Lilac, Ducky, Sade, Laurent, and Nami, can you briefly walk us through your story – how you started and how you got to where you are today.
Lilac Vylette Maldonado (LM): I identify as a disabled, chronically ill, and neurodivergent queer and genderfluid Chicanx femme historian, zinester, culture worker, and community organizer. I began connecting with the LGBTQIA+ community in a school club at Los Angeles Pierce College around 2008, and soon thereafter became quite active in activism and community organizing both on and off campus. By the time I finished my BA in History from Cal State Northridge in 2014, I had five years of experience organizing around LGBTQIA issues, gender justice, reproductive justice, food justice, racial justice, and body acceptance under my belt, yet still found no place within community where I felt fully embraced for all I was.
You cannot be what you have not yet experienced. The world showed me that I must compartmentalize myself and my identities in an unfair compromise to gain acceptance in the public sphere. But how does one begin to disassemble their truth without also losing their sense of self? How does one retain their self worth when there is nowhere that affirms them in their wholeness?
When I began my foray into Disability Justice, I began as a weary student activist who gave up on finding community spaces and organizations that celebrated all facets of their identity; especially as someone who holds as many marginalized identities as I do. I engaged in years of volunteer work, community organizing, and community building which fortunately crossed my path with many others queer, trans, and intersex folks who experienced similar disenfranchisement in queer spaces, even those spaces claiming a commitment to social justice. Amongst my peers, we found that most organizing spaces within the nonprofit sector and academia followed the very capitalist structures, that prize productivity above people, which they allegedly disavowed. Direct action and community engagement were often ignored in favor of whatever would bring the most funding or prestige to the organization. We decided that we could not wait for others to create the spaces we needed. We sprang into action because our communities needed to be educated on Disability Justice to learn how to celebrate themselves first, then each other for all of their identities. If queer trans and intersex disabled folks had not yet experienced validation, affirmation, and connection to community, it became my personal mission to extend them that kindness, hoping that it would be contagious. Finding others who not only shared that vision but also would invest their time and effort into it gave me hope that we could create spaces that could heal and transform people, even ourselves, into the community we sorely needed.
Ducky Jones (DJ): I was born intersex in the 80’s which in that time in the DSM and still today as a mental illness. At the age of two, I was put into foster care and my biological mom abandoned me at the age of five. So immediately, I am already dealing with abandonment and trust issues. I was already dealing with trauma at a young age where I have been in therapy since the age of 6 years old. Luckily, I was put with a foster parent that was very supportive and reassured me that I will persevere and wasn’t going to stop her from loving me like her child. I was raised that no matter the limitations I may face don’t give up and actively fight against the narrative.
So I decided that doing some type of workaround disability when I grew up but didn’t know what direction to take or how to intertwine it with my career aspirations. So after being homeless as a youth, I decided to volunteer at homeless shelters in Downtown Los Angeles during the holidays feeding homeless families and children. This is while I am dealing with abuse, trauma, depression, CPTSD, and Borderline Personality Disorder. I started volunteering for the LGBTQIA+ community in 2012.
As my work progressed through the community participating and being part of events, nonprofit organizations I realized that a lot of spaces were inaccessible and disability wasn’t prioritize within conversations at the table. It frustrated me that no matter the space that at least one of my identities felt left out. So I had conversations with longtime friends and colleagues that had the same frustrations Lilac and Nami. It started with us just doing panels at conferences about disability. The results from the feedback from attendance we saw then how imperative that we need more education and awareness around disability and neurodiversity. So we brainstormed and started Los Angeles Spoonie Collective.
Sade Musa (SM): I’m a cis femme queer mixed-Black herbalist who is multiply disabled, chronically ill, and neurodivergent. Although I was always a sickly child, I was not born with a visible physical disability. I was active growing up: loving to dance, roller-skate, and workout. When I was seven years old, a strange spot showed up on one of my legs. At the time it seemed nothing more than a skin “defect” but by my early twenties it would deepen and spread — soon causing debilitating pain and weakness. As I got older, and my still-undiagnosed leg condition worsened, I had to give up many of the activities I used to love. Internalized ableism, reinforced by shaming by friends and lovers, kept me from seeing my state as anything but temporary. Conditioned by a society dismissive of Black femme pain, my refusal to acknowledge what I was experiencing was unsurprising; as was the fact that I consistently failed to advocate for myself at work, school, and in relationships, while at the same time fiercely protecting everyone in my life.
In my mid-twenties, a constellation of symptoms that had before been merely inconvenient now became debilitating. I was completely shut out of the workforce due to the inability to find a job accommodating of my fibromyalgia (and suspected endometriosis and lupus). This lack of opportunity is one of the things that propelled me towards herbalism. Formulating remedies to help myself and others manage their chronic conditions, and sharing my passion for plants and their stories, gave me a sense of purpose — and, more importantly, these things could be done at the pace needed to maintain wellness.
In the course of my work in the herbal scene, I spoke out against health and racial injustice, but still was struggling with advocating for myself. I began actively seeking out events centering the sick and disabled community to gain a foundation for understanding my experiences, as well as to meet people who shared them. This led me to attend a panel by LASC, whose members impressed me by their individual and collective efforts to create community for spoonies and bring attention to issues important to us. When they asked me to join their collective I jumped at the opportunity! It has been a pleasure to be part of this group and not only am I incredibly proud of the work we do, I feel immensely privileged for the opportunities it provides to advocate for myself and others.
Laurent Corralez (LC): Despite being born disabled, my parents always taught me I could do anything as long as I spoke up for myself. I think they did their best to mold me into a strong person because I was disabled. It was their way to push me to overcome ableism. So I’ve been an advocate for myself as a disabled person from a young age. I wasn’t necessarily an activist, but of course the personal is political and that seed was planted inside me.
It wasn’t until high school that I was introduced to activism. I had a lot of black friends and they were part of a group on campus called Black Student Union. I joined to support my friends and do what I could as an ally. It was the first time I really looked at the world and saw the inequality that existed.
In college, I was an active member of PETA, worked at a queer center, worked at a women’s center, and volunteered at Bienestar, a queer latino non-profit. Activism was such a huge part of my life but outside of signing up at the Disability Resource Center to get extra time on exams, I distanced myself from the disability community. After all, my parents taught me that I wasn’t my disability. Why would I choose to put my energy into something like disability activism instead of working to overcome my disability so that people see me as more than just a disabled person?
Two years ago, I found out about the LA Spoonie Collective as I was walking around at a zine fest in LA. I knew some of the members already and wanted more information about the group. The members tabling that day told me that it wasn’t any disability rights group, it was an intersectional disabled group made up of queer and mostly POC members. That piqued my interest and I joined on the spot. As a member of LASC, I can be a proud disabled trans person of color.
Nami Hatfield (NH): Disability, Neurodiversity, and Chronic illness has always been a major part of our life, and shaped who we are. As part of a Neurodiverse multiple system with a fine motor and special patterning disability, depression, derealization, and anxiety we all had to learn to take on the challengers and to advocate for the support we needed. As we have grown up, we have come to realize that we want to share ourselves with the world. There are many people we are extremely grateful to for supporting and affirming us through our transition, education (in and outside the classroom), challenges, and most importantly for helping us form meaningful friendships and relationships with others. We wanted to help support, lift up, empower, and affirm others, and return the support given to us, and to those who have and continue to support us. Wanting to give back and work with others is very important to us and helped inspire us to go into the Library and Information Science graduate program at UCLA, and to continue to work hard as part of the local community.
One of the biggest challenges we had when we were coming into our identities and activism was finding a supportive and affirming community and an organization that was doing healthy activism. While many groups and people cared deeply about the work they were doing or the communities they were part of, we often felt like outsiders within these organizations. Often we struggled to feel recognized, which often led to us into doing more and more activism work in hopes of developing outside connections. This especially in graduate school felt like a vicious cycle where we were doing way too much, but always felt like we should be doing more. In addition to burn out, this led to a number of mental and physical health issues as we were constantly overworked, underslept, and underappreciated causing a lot of chronic exhaustion and poor mental health.
Even after graduate school it was very difficult for us to find an outlet for healthy activism. Many activist organizations seemed more concerned about the work, internal politics, and the clicks then our wellbeing. We would often be pressured to do things like get up early in the morning to canvass on our only non-school/work days (which is extremely difficult for us due to our disabilities), be pressured into going to mixers we didn’t want to attend because the narrow spaces and loud music gave us major anxiety, or go to award ceremonies primarily to promote our group to the parent organization and the paid group organizer.
Another huge trend that we saw often was orgs chasing big goals and money. It felt like the desire for money or big events to attract politicians was getting of working with the local communities, which was the main reason I got into activism in the first place. Often we would see orgs making major decisions based upon hierarchy and money, rather than listening to the community. We recall once working with another transgender woman to help make organize material for a transgender canvass being hosted by a group within a major LGBTQIA organization. After spending hours working on the script we submitted it only to have our advice mostly ignored by the mostly cisgender staff, who went with their own model instead. Later this organization ended up letting go and replacing most of its staff because they disagreed with the direction its leader was taking.
After we got a fulltime job at the library we decided we needed to focus on activism and community building within the library, and for a little while this was main form of activism we did. Being librarians gave us a way to channel our work with the community, and put aside a lot of the stress our previous activism work was causing us. We also got a chance to not only to finally get compensated for our work but see the direct difference we were making on a daily basis. It was also around this time that we ended up officially forming the Los Angeles Spoony Collective with two of my best friends Ducky and Lilac.
One of the first big inspirations for forming the collective came up when we were in graduate school on a retreat with Lilac. Lilac ended up forming a breakout group for disability because the camp had no programmed group for it. For us, it was the first time we had ever been in a space that engaged in talking about, affirming, and supporting Disabled, Neurodiverse, and Chronically ill peoples. After this session, it became a major priority of our work to address these topics within activist spaces, and we tried our best to apply disability justice to orgs. It wasn’t until the Spoony Collective though that we felt our activism was successful and supported to the fullest. By working with Lilac and Ducky who both were close friends we were able to form an organization that reflected all our needs, without many of the problems or push back we had with many of the other orgs in the past.
Great, so let’s dig a little deeper into the story – has it been an easy path overall and if not, what were the challenges you’ve had to overcome?
LM: As a collective, we have struggled most with facing structures of institutionalized ableism. Although we have existed for over two years, we are often overlooked for opportunities within the community to speak, advocate, vend, or perform at events, or pushed out of opportunities due to lack of accessibility.
Many events and spaces that serve the LGBTQIA+ community are inaccessible to folks with disabilities for a variety of reasons ranging from wheelchair inaccessibility, to a lack of restroom access, to overwhelming loud music and flashing lights, to illness-inducing scented environments, and more. So many tools have been created to speak to this issue, yet the urgency has not motivated much change. Our needs are seen as extravagant or unnecessary burdens when the needs of able-bodied folks are accommodated and normalized.
Mia Mingus has written extensively on the concept of “Access Intimacy,” or the affirming validation one feels when someone understands and commits to helping you meet your access needs. As disabled folks, we do not have the luxury of waiting for able-bodied folks to step into the fray and bridge our gaps in access; we have our own needs, lives, and dreams to attend to. As a collective, we have overcome our individual and group challenges by working together. We have a bond of shared solidarity and understanding that has allowed us to remain resilient and has fostered our growth. The access intimacy we are nurturing has been healing for many of us who are redefining community for themselves as a group of chosen kin who may share identities but most importantly share a commitment to each others’ well-being and success.
DJ: The obstacle is finding ways that I am not internalizing and trivializing my disabilities because of the pressure of community and society. Since most of my disabilities and chronic illness is invisible. I didn’t take my health seriously and downplayed it. I use to go to every event and rallies ignoring my body and health because I felt if I stop showing up or doing work I wouldn’t be seen in the same light. I felt community would alienate me if I started prioritizing my health. But now I have the support of a collective and that motivates me to be the best version of myself and always speak out on ableism and be open and vulnerable about my own disabilities.
SM: Learning how to advocate for myself, and giving voice to my experiences, has been my greatest struggle. I am also still sometimes uncomfortable with using disability/sickness as an identity. Much of my discomfort stems from traumatic experiences in which loved ones rejected/abandoned me after I revealed my health issues. Forming new friendships and community has helped me heal, but being part of this collective has been the most important part of that process. LASC members have modeled for me how to fight for visibility as a disabled person, and lovingly held space as I stubbornly accepted the unsustainable nature of performing wellness.
LC: My main obstacle has been challenging my view of disability activism. I used to see talking openly about my disability as a weakness. I used to think that being honest about what I couldn’t do as a result of my disability was whining and I should instead work to show people that I could overcome any obstacles I may face. Now that I am part of LASC, I am around a group of badass disable people who aren’t afraid to speak openly about their disabilities and ableism. Being around such people has influenced me to be a lot more open about my disability and fight ableism I may face.
NH: Smooth would be about as far away from our life experience as we could image. While we would say that our road has been way smoother than some peoples, our road still had a lot of hardship in it. From day one our identities have set us apart. It was very visible in K-12 that we were disabled. We grew up having in resource classes, up until middle school we had an assistant, and we needed accommodations others students generally didn’t use in order to be successful. These factors clearly set us apart from other kids at school and made it difficult for us to find friends. On the inside as transgender and otherkin multiple girl, we always felt like we didn’t belong, while having no place or way of talking about or exploring these differences.
We spent a lot of school time alone. My protector (now organizer) Raven often had us reading, daydreaming, or working school work because we had so few friends. My parents did try to help us out, but they had no idea how to do so or what the cause of the depression we experienced. After disclosing that we are trans to our parents and having them not understand had a hard time feeling that our feelings were valid. Until we transitioned though we would often wear heavy long steel shirts and coats even in the dead of summer to hide our body because we were ashamed of it. Within this period we had a lot of internalized struggles admitting we needed help, that our identities were valid, and that we needed to learn to advocate for ourselves. We wanted things to get better, but they didn’t until college when we finally started to once again to recognize our feelings and to take action to change things.
Some of our life has definitely improved as we have gotten older, but all of that growth came hard work and determination rather than by chance. Moving forward with our life meant finally disclosing again to our parents about our identities and explaining them (which is one of the scariest thing to do). It meant getting the support we needed, advocating for our needs, and helping with the needs of those around us. It meant learning to work together as a unit of multiple people in a body, and to trust those within the system. It meant going through an unbelievable amount of stress to get our master’s degree, without not getting the counseling services we needed. It still means continuing to have to interview for work, and paying to be driven around to different locations sometimes far from home when we can’t drive or easily qualify for Access. It means constantly having to see doctors at strict appointments rather than when we necessary most need them. Worst of all though we have to face a lot of stigma and prejudice daily, sometimes having to hide who we are, and often being isolated due to cost and mental health all so we can just get through a day.
Life has come with challenges, but it is that challenge that I feel has helped make us better people. It’s really forced us to look at ourselves and the world around us and to seek out answers. That doesn’t mean that all those challenges are good, many are still pointless, stupid, and unpleasant, but it has meant we’ve had to develop a sense of self and advocate for that self. Despite being supported by my amazing parents and kitty friends, having a nice home and a job we love, and continuing to work hard life continues to be a challenging and probably will be for the rest of our lives. What is most important to me though is not the challenge which will remain, but creating support systems and continuing to support myself and others who face challenges.
Please tell us about Los Angeles Spoonies Collective.
LM: The Los Angeles Spoonie Collective is a grassroots group of Trans, Queer, and Intersex Disabled, Chronically Ill, and Neurodiverse folks working to elevate the voices of our community, and educate the world since our inception in 2016.
Our work brings a disability justice and intersectional feminist lens to social justice. Informed by our many years of community organizing, we offer nuanced perspectives of resilience and resistance from historically oppressed people.
We offer interactive workshops & panel discussions like: Disability Justice 101, Putting the “I” Back In Our Team: Intersex Solidarity, Body Love for “Imperfect” Bodies, Crafting Justice: Build Your Own Self Care Toolkit, Disability Visibility & Erasure in Media, and Intersections of Oppression: Disability & Race. We also share opportunities and resources to further our individual hussles which range from poetry to herbalism and everything in between.
DJ: Los Angeles Spoonie Collective is an organization that is a program of Equal Action. We are a collective that fights for disability justice from a feminist and intersectional lense. We are a nonhierarchical collective that is radical within our movement. We are known for our disability workshops and panels throughout Los Angeles. Educating schools and businesses to be educated on and aware of disability issues while making their campuses more accessible. We are also known for our intersectionality from our diversity and collective that supports one another. What sets us apart is that we are a collective that is lead by a core that is diverse and is mostly QTIPOC folx that listens and is for the community.
SM: LASC is organized non-hierarchically, and values each member as much as the other. I regularly find myself amazed at how great our dynamic is, and how much compassion and empathy we share among ourselves. While I initially joined LASC because I wanted to challenge myself to do disability advocacy work, what keeps me here is that it’s such a fun and accepting group.
LC: LASC is an org that fights for intersectional disability rights. Most other disability rights groups are very white and cisheteronormative and, therefore, don’t fight for a large segment of the disabled population. Being intersectional and a mostly POC group, no one is left out of the conversation.
NH: When we struggled to find an organization existing that addressed our needs, we went ahead and created one that would. With the Los Angeles Spoonie collective we got a chance to create the sort of org we always wish we were a part of. We are group that is designed to be by and for Disabled, Neurodiverse, and Chronically ill peoples. The collective is a place where we can actually share our experiences and who we are together with each other without it being overlook or being presented with any negative judgment and/or stigma. We really admire how much everyone in the collective cares for one another as people. All the collectives’ members especially the leaders (Lilac, Ducky, Shayda, Laurent, and us) all work to make sure everyone has a say and included, and to avoid the typically hierarchies of power often found in other orgs. We are also very careful in our collective to not to pressure people into doing work they do not have the spoons for. We share the organizing work with each other and our members and don’t shame each other for taking time we need to focus on our own health.
As an organization one of our biggest goals are to create a space where as a community we can talk about our identities, how those identities intersected, how we can value and support one another, and a place where we can bring up our experiences and feelings. We, as a collective, work to create dialogues, zines, and workshops designed to fit our community’s needs. Our goal within these spaces is the creation environments where people can be vulnerable with one another, and that our spaces center Disabled, Neurodiverse, and Chronically ill identities. In many events we have worked with people who have never had a chance to talk about or engage in their identities as Disabled, Neurodiverse, and Chronically ill. As a collective we want to help break the stigma of these conversations by engage in dialogues with people who haven’t had them so that they can then apply that conversation to their life. While we do promote a space for learning and always include a brief disability 101 in our panels, primarily we create spaces for our community members to speak their truths without judgment and that are designed for allies help create a brave space through listening.
While we do focus on the compensation and financial support of our community members and do at times ask for funds to support some of our bigger activities, our organization is not really about making. Rather than seeking out money we work to make a difference in Disabled, Neurodiverse, and Chronically ill people’s lives on a personal and local level. As a collective we will never turn away someone for not being able to pay, nor do we expect any sort of membership fee or direct dues. Instead, we work together and support one another to ensure everyone who wants to be a part of an event as many of us can’t drive, need physical or mental support, and/or require an accessible environment. As a collective, we all put in all this work even though it is especially hard for us because it allows us to empower and support each other, and the Disabled, Neurodiverse, and Chronically ill people around us while also giving our community the tools to empower and support each other.
What were you like growing up?
LM: As a child, and definitely as an adolescent and young adult, the words I could best use to describe myself would be curious and adventurous. Like my peers, I frequently escaped the harsh realities of my world by cloistering myself in my school or public library. I was fascinated with Greek mythology, ghost stories, and nature as a child, and would spend many a lunch hour tucked in the library reading about Medusa or Icarus and imagining myself with a head full of snakes or faulty wings.
As an adolescent, with a bit more autonomy as a latch-key kid, I was quite fearless in my pursuits. I went to the Rocky Horror Picture Show with my fellow goths, participated heavily in theatre and improv with my fellow thespians, competed in the Science Bowl with my fellow nerds, and wore a powder blue corduroy tuxedo with ruffled shirt, cumberbund, and bow-tie a la Jim Carrey in “Dumb and Dumber” to me Senior Prom.
I came into my sexual and gender identities slowly, as I was raised in a traditional Mexican family that was heavily involved in a very controlling church which we have since distanced ourselves from. I remember escaping to Hollywood Boulevard, a two hour Metro commute, just to blend into the anonymous blur of weirdos and tourists. On the Hollywood Walk of Fame, I practiced my prowl: a series of “America’s Next Top Model” inspired sashays, including Tyra Banks’ legendary motionless 180 degree pivot! There on the thoroughfares of Hollywood I discovered my femme, and I have never looked back since.
Disability is a difficult part of my identity to reckon with retrospectively. Although I was aware from a very young age that I was frequently ill, and could not perform the same in physical activities. I always remember being consumed with anxiety about measuring up to my peers and concealing and therefore also neglecting my disabilities. I have long since struggled with a deep sense of learned shame; learned because society taught me to view natural parts of human diversity within myself as shortcomings to be hurriedly repaired or kept out of sight. Unlearning these harmful messages has been challenging yet fulfilling work.
DJ: Growing up, I was quiet, reserved, but also fun to be around. I played basketball and ran track in high school, I was someone who kept their group of friends small because of my feelings of abandonment. I always spoke my mind and told jokes to hide the pain I was going through. I learned to write raps and poetry where I can express myself through artistry. I always make the best out of the situation, which is why I am able to get over obstacles. I always have a smile on my face and I am always there for others. I love to dance and listen to music because I like to let myself go and be the person I dream to be.
SM: Growing up in an abusive environment molded me into an obedient and very anxious child. Homeschooled until college, I spent my childhood and teenage years isolated with few opportunities to interact with people my age. My family life was my whole world, and as this world was dysfunctional, I escaped into my imagination — which was largely fueled by my passion for art and dancing. I loved to read and devoured anything and everything I could get my hands on, but was partial to fantasy books and fanfiction. From a young age, I was extremely curious and loved learning about other places and cultures. One of the ways I indulged this curiosity was by exchanging snail mail letters with nearly 300 pen pals across the globe. This hobby cost a small fortune in postage every month, but opened my mind to how beautifully human cultures vary from one another! I possessed a strong work ethic from years of delivering newspapers or cleaning factories and schools with my parents. Since I didn’t come from money, if I wanted something I had to work hard for it — and I did.
When I was a pre-teen, I started a jewelry business to pay for a dance recital my parents couldn’t afford. However, my most important job was taking care of my six younger siblings. Having such a large amount of responsibility at a young age made me overly serious and, frankly, a little uptight. Even with all the time, I spent working or taking care of other kids, as a homeschooler I still had a flexible schedule. I often took advantage of this by staying up late to watch sci-fi movie marathons or Taxi — my fave show on Nick @ Nite. After receiving a subscription to National Geographic, I became passionate about environmentalism and interested in the natural world. I would annoy my siblings by timing their showers and rescue all sorts of things from the trash for reuse. It was common to find little me running around with lizards and hamsters in my dress pockets and jars full of worms and spiders!
LC: Growing up, I always had a lot of friends and was that kid who always won awards in school. I enjoyed nu metal, writing poetry, and hanging out at the mall with friends. Overall, I had a very healthy upbringing and was a product of that.
NH: When we were younger we were similar to how we are now, afraid, shy, quiet, sad, unhappy, and isolated. We still love books, anime, manga, movies, all sorts of music, learning things, Japanese literature and history, incense, exploring, writing, reading, Godzilla, reviewing, Sailor moon, sleeping, food (especially Indian and Japanese), cooking, obscure knowledge, philosophy, and trying to support the planet.
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