Aaron Goodman: Welcome to the Chemical Sensitivity Podcast. I'm Aaron Goodman, host and creator of the show. I'm a long time journalist, documentary maker, university instructor, and communications studies researcher. And I've lived with Multiple Chemical Sensitivity, or MCS, for years. 

MCS is also known as chemical intolerance, intoxicant induced loss of tolerance, or TILT. The illness affects millions around the world, and the number of people with MCS is rising just about everywhere. Living with MCS means dealing with a range of overlapping symptoms, including fatigue, shortness of breath, difficulty concentrating, muscle and joint pain, headaches, eye irritation, confusion, memory loss, rashes, and more.

Trace amounts of chemicals and synthetic fragrances in household and personal care products, pesticide, paint, construction materials, cigarette smoke, and more can spark a cascade of debilitating symptoms. Finding accommodations can be very complicated. Dismissed by healthcare providers, employers, even loved ones, many feel misunderstood, isolated, and invisible. 

This podcast aims to change that. We delve into the latest research and speak with all kinds of people impacted by MCS. You'll gain important knowledge, a sense of validation, and learn about navigating the realities of MCS. 

We also explore wider issues connected to toxic chemical pollution and how individuals and communities are pushing back against it and the harms it causes.

In this episode, I'm speaking with Shayda Kafai, PhD. Shayda is an Assistant Professor of Gender and Sexuality Studies in the Ethnic and Women's Studies Department at California State Polytechnic University in Pomona, California. 

Shayda refers to herself as a queer, disabled, Mad, femme of colour, and she commits to enacting the many ways we can reclaim our body minds from intersecting systems of oppression.

As a scholar, her writing focuses on intersectional body politics and the resilient strategies of disabled, queer, of color, art activism. Shayda is the author of the 2021 book, "Crip Kinship: The Disability Justice and Art Activism of Sins Invalid."

In our conversation, you'll hear Shayda explore disability justice and how people with MCS can connect with it.

[00:02:50] Aaron Goodman: Welcome Shayda. Thanks so much for taking time. 

[00:02:53] Shayda K.: Thanks for having me. I'm really thrilled to be in conversation today. 

[00:02:57] Aaron Goodman: Maybe I could just start off by asking you, Shayda, do you have any thoughts or impressions or feelings about Multiple Chemical Sensitivity as it relates to your work? Or have you had any experience with it yourself?

[00:03:12] Shayda K.: Although I personally haven't had experience, I've had some. students and colleagues who have Multiple Chemical Sensitivities. And I think that disability justice has provided all of us with this powerful container to really honor the needs, the access needs of all of our disability community, whether that includes ourselves or somebody who is in community with us and Multiple Chemical Sensitivities and environmental injuries are things that Sins Invalid themselves discuss.

More personally, I think the conversation of really expanding access needs to really asking students to be mindful of the scents they wear in class or have low scent spaces has been another practice that I've been using that I've been using in the last few semesters. 

[00:04:03] Aaron Goodman: Fantastic. I invite you to talk a little bit about Sins Invalid, please.

[00:04:09] Shayda K.: Yeah, absolutely. So they are a performance project. They are based in the San Francisco Bay area, and they began in 2006, really from this need and this early conversation between co-founders, Patty Byrne. And Leroy F. Moore Jr., two disabled of colour friends and colleagues having lunch and realizing that there are no spaces or stories where disabled folks can, one, be centered, but two, have conversations that are validating around embodiment and beauty and sensuality.

And that these stories mattered. And so, what was supposed to be just a one time performance of people coming together, making art for the community, developed a hunger by folks who saw this work, and they've been creating art and performance work ever since, in conjunction with disability justice activism.

[00:05:16] Aaron Goodman: How do you think we can understand these terms, disability studies and disability justice? What do they really mean on a, on a day to day level for folks who are navigating the world with invisible illness? 

[00:05:29] Shayda K.: That's such a good question. Before I could even fathom that there is a discipline about the histories and the activism and the cultural art making and legacies of disabled folks, I had to realize that disabled is not a bad word. And this is a very profound realization that I think a lot of folks have to come to and I've seen amazing art on social media saying disabled is not a bad word and really our consciousness around the importance of identities. That's one thing as somebody who is Mad, I most certainly felt a lot of shame and stigma around disability.

And I think there was a lot of internalized ableism that I was holding that I had to unlearn. And so I think anytime we have, whether it's a area of study or it's going and seeing a performance, or it's just being in community with folks and listening to a podcast like yours, right? Anytime we have these opportunities as disabled folks, we have an opportunity to unlearn the narratives that have been forcefully placed on us, that don't align with us.

And I think it's really particularly challenging for folks with non-visible disabilities like you were mentioning. I think it's particularly challenging because even for myself, the main image, and I think for most folks, the main image of disability is the wheelchair. I'm thinking of like, disabled parking. This is the visual indicator of what disability means and it's always associated with something physical. 

So, I know that for myself and for my students, naming our needs is often interpreted as having, we have to prove that we have access needs. We have to prove that we're disabled, and that burden of proof is problematically placed.

So, you're also making me think too about the need for cross-disability solidarity, for an expansiveness of understanding that not all disabilities are visible, and what does that mean as we move through this world. 

[00:07:46] Aaron Goodman: You mentioned the term Mad; M-A-D. Would you like to help me understand that term, please?

[00:07:55] Shayda K.: To talk about psychiatric disabilities, the phrase mental illness is often used and as a way to move past simply diagnosis and a medical way of looking at our body minds, folks in Canada began a movement to say, what if our madness was actually a point of pride and what if it could be a political center from which we organized.

So Mad pride parades began and they were really guided by psychiatric survivors, folks in organizing, disability justice folks. And so I use this word to honour that lineage that our identities can be political. And can hold power as opposed to sometimes using language that really strips us of our autonomy and our power.

[00:08:49] Aaron Goodman: This is amazing. It's the first time I've heard it and it's really moving and fascinating. So thank you for helping me understand it. And as I'm listening to you, Shayda. I was thinking, is it similar to how people have taken back ownership of terms like queer and butch and, and others? Is it sort of the same thing?

[00:09:11] Shayda K.: Yeah. I have a huge smile on my face - for people who are listening - Yeah. It's really a process of reclamation. And taking back language that perhaps was used as a weapon or as derogatory for the person, for the community, for the self and for empowerment. 

[00:09:29] Aaron Goodman: And if we go back a little bit, you were talking about the term disability and there's power in owning that term, language. Is there power in using that word? 

[00:09:42] Shayda K.: For me personally there is, and I'll back up by saying first that I do introduce myself on the first day as a disabled faculty member and that our students are going to be taught by disabled folks and it's important for them to notice, but I think there's power in this naming because then that's I've noticed opened up such generative space for folks to say, I've never shared my access needs, I've always wanted to, but I felt shame around them. 

For me personally, I do think there's a lot of change making that we can happen once this naming occurs. So I was contingent faculty for nine years on my campus and I held a lot of anxiety around disclosure, because quite frankly, I wasn't sure if I would still have a job if I disclosed.

And so I do want to acknowledge that naming is powerful, but when a person does it, how they do it is so attached to what they're navigating on a daily basis, what they have access to, what their privileges are, or lack thereof. And so, it was important for me and it wasn't something I was able to do right away.

[00:10:57] Aaron Goodman: Yes, I hear you. Is it harder for people to talk about being disabled when the disability is invisible? 

[00:11:05] Shayda K.: I've been thinking a lot about this. My gut answer is yes. It's interesting because I realize that I've always had this pattern, if my anxiety is elevated, if my depression or my racing thoughts are elevated, I would often tell employers that I have a cold and I can't come in, or I have a migraine, I can't come in. Seemingly to say that if it's something physical, it will be believed and honoured and the permission for rest will be granted versus if it's something that is not visible, there's that difficulty or that challenge around it. So for myself, the answer would be, yes. 

[00:11:48] Aaron Goodman: And you mentioned symbols, for example, a wheelchair and the disability signage that we're all familiar with. And the thing that comes to mind for me when we talk about people with Multiple Chemical Sensitivity is this, the predominant symbol may be a mask and we know that the mask has become very politicized and people experienced harassment and bullying online and in real life. Do you want to talk a little bit about if we're called on to show proof, holding up a mask or wearing a mask may be the thing to do, but it's often quite challenging to do. And it takes a lot of courage in my own experience I feel that. 

[00:12:25] Shayda K.: No, absolutely. I'm thinking firstly of the complexity and the problematics around burden of proof. And then I'm also thinking about, yeah, this complexity that you're speaking about, let me show you by masking. Let me show you by using a cane. Let me show you by using my wheelchair and yet how those elements are often stigmatized. 

Somebody in class brought this up a few years ago, but they were saying how interesting it is that assistive devices, some of them are celebratory and fashion, fashionable, and others aren't. And I'm thinking about this conversation of like eyeglasses, which I wear as an assistive device, which people don't really think twice about, it's not politicized. 

[00:13:17] Aaron Goodman: In your work, in your book, you write about Crip Kinship. Do you want to talk a little bit about Crip Kinship in person? And you also talk about finding Crip Kinship online. 

[00:13:30] Shayda K.: So my understanding of Crip Kinship is very much informed by an interview that I had with Patty Byrne and Sins Invalids, evenings of performance art, in particular, though I think this can relate to the Disability Justice Workshops they do as well, Patty was saying that this performance project creates crip-centric liberated zones. The crip-centric liberated zone is a place where disabled folks, whether they use that language to name themselves, or whether they know they have access needs that must be met, like everybody does, it's a space that we can enter where our needs are met without shame. Where we can show up as our whole messy, complicated selves and where we can really be in community with one another. And so this idea that we can be in interdependent collaboration with each other really became the foundation of why it's so important for us to have kinship with one another, especially for disabled folks.

To have kinship with one another, for myself as a, as the daughter of immigrants, and also just as somebody who is Mad. There were so many places where I learned that disability and madness were things to be not spoken of, were things to be hidden, things to have shame around. And so, kinship, community, interdependence became these balms and these remedies to really toxic narratives of hiding and shame and silencing. And that's where the idea and the name for the book came from. 

[00:15:22] Aaron Goodman: So moving to hear this and maybe I'll just quote you, you write about crip-centric, liberated zones as quote, "A place where through art activism, community workshops and trainings, we can enter into a present where all our body-minds are valid, beautify and revolutionary, a present where we can live liberated from oppression within a crip-centric, liberated zone. We could reimagine, but insistent and courageous, disabled, queer people of colour living can truly do..." 

I'm reflecting on my own experience more than I usually do in the podcast, but I found that my experience has been quite, I almost call it traumatizing, dealing with the ableism in my own workplace, apart from the podcast. 

Has there been a desire on your part and others with illnesses to gravitate to communities where we can develop that sense of community and togetherness? Because it can feel really uncomfortable in other spaces, and we sort of long to be with other people who get it and to support each other and heal ourselves, if that's a word we might use.

[00:16:40] Shayda K.: Oh, absolutely. One of the things that I think disability community has also really empowered me with is looking at where ableism, for lack of a better word right now, infiltrates our daily lives. And I'm really beginning to understand how time is ableist. This is coming from disability justice work around this idea of sustainability. But it's also coming from the works of Alison Kafer and Ellen Samuels around crip time and the idea that time is functioning radically differently for all of our bodies. And that's just one small thing that has made a profound shift in my life that came from that community.

[00:17:33] Aaron Goodman: Wow, it's so revolutionary hearing you talk about this. You also write about the need for urgency for change at this moment and for people who are not affected by disabilities or illness to participate. And you write, "Those of us who are most privileged need to humble ourselves now and learn from those who are most marginalized, for those who have struggled through and who refuse erasure."

[00:18:06] Shayda K.: The reality of living is that at some point, we are all going to be disabled. We might be temporarily disabled. It's a unique fluid category in that way, but it is radically important that the tenets and the disabled living practices around, for instance, time or sustainability or interdependence that are so critical to disabled community... It is radically important that everybody engages in those. 

For instance, in the "Disability Justice Primer," there's a section that says how to organize an accessible event. And one of the first points is, ask people what their needs are. If you have a protest, the elders and the disabled folks will set the pace of the protest.

And I really consider this to be a metaphor for how we need to move through the world. The wisdom-making lessons that non-disabled folks can access and learn from disabled community... And then also, in thinking about privilege, I need to acknowledge that on the one hand, I'm here talking to you and I'm able to teach because of the work of the mainstream disability rights movement that began in the U.S. and developed, especially in the 60s and 70s. 

And at the same time, that movement was very white-centric, focused a lot on physical disabilities. And so in thinking about privilege and who is left behind, that's where disability justice comes from. In realizing that, oh, yeah, we need to talk about, and we want to talk about how race intersects with disability, how gender and sexuality intersect with race that intersect with disability, et cetera.

And so really being mindful of the privileges we carry, I think is essential. It's something I try to do in my work. I let my students know that I have the privilege and the safety to be able to tell them that I have a disability, for example.

[00:20:15] Aaron Goodman: Oh, yeah. Oh, I totally understand. And one of the aims of the podcast was—I've never really said it out loud—but to recognize my own privilege and to center as much as possible the voices and experiences of people from all different backgrounds. 

And also recognizing - and we could check in together about this - that the majority of people with Multiple Chemical Sensitivity, people impacted by environmental injustices, are majority women and Black women, Indigenous women, people who are economically disadvantaged. Would you like to talk a little bit about that? It doesn't have to be specifically about MCS, but how are racialized women and gender minorities, sexual minorities impacted by disability injustices?

[00:21:08] Shayda K.: Sure. Oh, the first thing that comes to my mind is environmental racism because of legacies of white supremacy and redlining. The spaces we are forced to occupy as a community of color, in particular proximity to waste, proximity to brown zones or schools that are built on the sites of waste. 

Yeah, I'm just aware of how our legacies of racism, classism intersect to create tangible mind-body impacts that are outgrowths of environmental racism and what that is doing to our communities and to our body minds.

[00:21:49] Aaron Goodman: Shayda, you write about dreaming and dream work and future. Would you like to read how you explore dreaming and dream work from your book, please?

[00:22:00] Shayda K.: Sure. So this is going to begin with a quote from Talila A. Lewis, who is an abolitionist community lawyer and organizer. "Indeed, dreaming is among the most difficult and brave kinds of advocacy work. When we create space for ourselves and others to dream, we embody recurring hope, active love, critical resistance, and radical change. We are reminded that those who came before us dreamed of that which no one thought could exist, that their dreams are the reasons that we now are living the impossible. Perhaps the most compelling survival tool that disabled, queer, gender non-conforming, and transgender communities of colour have is their dream work. Dreaming is not passive. In dreaming, our communities materialize a world where through fury and love, transformation in all its rebelliousness thrives."

[00:23:03] Aaron Goodman: Yeah, that's wonderful. And I'm thinking of people in the MCS community and others who are dreaming on a daily basis, an hourly basis, a minute-by-minute basis of a world that they can exist in, in which they can be free and free from suffering, free from exposure to synthetic chemical fragrances and chemicals. And we continue to dream, don't we?

[00:23:30] Shayda K.: Yes, and I have been reading and learning about the work of Tricia Hersey. She wrote a book called "Rest Is Resistance" and her Instagram handle is The Nap Ministry. If folks already follow her, her work is amazing. And she writes as a Black woman in the U.S. and as somebody who realizes that capitalism and the demand of productivity—that our worth is contingent on what we produce, how we produce, how fast we do it—that really capitalism intersecting with racism really does not permit for our dreaming to take place, for rest to take place.

And so with the work of disabled folks of all kinds, chronically ill folks of all kinds, I really believe that the slowing down, the pause, can really allow us to, one, communicate our needs and to create a world that does not yet exist. Disability justice is so, because it was dreamed into being, because people were exhausted of not having their needs met, of having their communities acknowledged. And so, yeah, dreaming is usually considered to be something really frivolous and passive and not important. But I'm really grateful that through the work of Talila Lewis and Sins Invalid and Tricia Hersey, I've really started to reposition it as radical, powerful work. It's the seed that starts everything.

[00:25:07] Aaron Goodman: Incredible. You also write at length about stories and the power of writing stories and telling stories. Would you be willing to read from your book, please?

[00:25:22] Shayda K.: Absolutely. So this is the last section of the introduction. It's called "Writing Ourselves" and then in parentheses "(myself) in." In writing this book, I have thought a lot about what can happen when we tell our own body-mind stories. When we resist erasure and write ourselves in, how can telling our body-mind stories instigate change? How do we alter our timelines and collaboratively create new futures when we learn our histories and share our body-mind stories? How does our relationship to ourselves change when we proclaim our body-minds in all our rolling, limping, drooling, frenetically stimming, and Mad glory?

[00:26:12] Aaron Goodman: Would you be willing to talk a little bit about your own personal journey?

[00:26:12] Shayda K.: Yeah! Oh, I'd love to! Anytime I do this practice of telling my own story, there is—because of the persistence of ableism, sanism—there's a lot of palm sweatiness that starts to happen. So I want to be vulnerable and kind of name that for all the pride and politicized empowerment that comes with storytelling, telling of the self and naming disability. There's always this unlearning that I have to practice and continue to do. But yeah, I think my journey started certainly in a place, in a medicalized place. 

First, with a diagnosis and for me personally, I know it's not the same for all community members, but for myself, the diagnosis was such a powerful moment of "there is a name." And for some reason, as a young person, I was diagnosed with manic depression when I was 17, having the tangibility of names really meant a lot. 

And I want to also say that in that beginning, those early five years, I was not in the disability community. I did not have a disability consciousness. I certainly did not know of other disabled people. I slowly started to meet other disabled people and started to do a little more organizing work in undergrad, but I was very timid and uncertain about what was going on, the importance of saying that I was disabled. So I was still coming from a place of a Middle Eastern immigrant family culture of "this is shameful and we will not speak of it."

And I think that shifted for me when I started to read other disabled narratives, when I learned about disability studies, other memoirs, and then that shifted more when I realized, "Oh, the story is political." There is a legacy of people who have been doing this resistance work willfully, despite systemic oppressions. 

And so I maybe have been teaching at Cal Poly for three years, and I disclosed my disability, my madness. And right before I did, I had submitted an article for publication to a disability studies journal. I was writing about the history of madness, and Aaron, somewhere in there, I used the word "we." It's a total accident, but somewhere in there I said "we."

And the editors gave it back to me and said they will not accept it the way it's written, but they think there's a bigger story. And they highlighted the "we." I know! And I went to my advisor and I said, "Will I still be hired if I write this?" And they said, "You'll still be hired where you will be valued and want to teach." So I disclosed professionally in that way before I graduated in my PhD program.

[00:29:23] Aaron Goodman: And I think a lot of people listening will have their own experiences with determining whether and when to disclose illnesses, disabilities, and it can be really challenging with MCS because a lot of people can't get a diagnosis and it's still what's often called a contested illness. 

I'd like to invite you to read from your book, please, where you quote Alice Wong, a disability activist and scholar.

[00:29:56] Shayda K.: Yes, before we can enter ourselves in stories, before we can become familiar to ourselves once again and embark upon a new route, we first need to learn how to love our body minds. 

Alice Wong communicates this best when she writes, "There is power in storytelling. Before I can even tell you a story, you need to love and praise yourself. You need to say that I do have a story, that I do matter. Inhabiting our body mind stories requires reflection. It requires the realization that our stories are valid and valuable, that they deserve to be told, and that they carry so much more than our forced ableist narratives of shame."

It is a decolonizing act to lean into this reality and to remember ourselves past, past the history of colonization and extracted economies, past eugenics, the limitations of the medical industrial complex, and past ableism's mandates to use storytelling as a way to move past into a transformed disabled queer of color future where all our body minds matter. It's disability justice and it's love work.

[00:31:23] Aaron Goodman: Yeah. How have you experienced that? How's it going? Loving yourself. How's it been?

[00:31:29] Shayda K.: It has been... It's a work in progress. I think as somebody who is living in the U.S. in the 21st century, who has moved through multiple intersecting experiences as a student, as an educator, as a person of colour, as a queer person. I think the process of love work, self-love work, always has a semicolon attached to the end of it, meaning it's never finished, meaning that I often forget these powerful lessons because of ableism and sanism and racism, all the isms. And it's because of the love of my community and my wife and my friends that I'm able to remember and push back against the silencing impacts of oppressive systems that make us—or that are intending to make us—very distant from the word love, especially love of self.

[00:32:42] Aaron Goodman: In your book, you write about creating space to tell stories. Disability stories is a way that we remake the world. I'm interested in learning more. And again, I'd like to invite you if you're willing to read from top of 51.

[00:32:58] Shayda K.: Absolutely. So this is a—thank you. And I'm going to read Leah Lakshmi Piepzna-Samarasinha's quote. They're explaining their first experience at a Sins Invalid show. "The first thing I noticed was the audience. I had never seen an audience like that before. There were so many disabled people. There were so many people using different adaptive devices. I was going on a night where there was ASL interpretation. So there were tons of deaf folks and hard of hearing folks. There were people who were stimming, people who were using MCS masks. And there were people who were so queer, so trans and so black and so brown all at once. It changed my world to see that that was a community that was possible. I had never seen that. Never."

Leah's description identifies another important gift of crip-centric liberated zones: recognition, validation, and healing. Serving as zones for liberation, Sins Invalid's performance communicates not only that disabled queer of color body minds exist, but beyond that, they are active storytellers, meaning makers, artists, activists, and that cultivate collective liberation together. And I think that's what storytelling can do, if only for the radical potential that as disabled folks we name ourselves. And I think this is a very important piece, because often I feel like our experiences are spoken for, spoken for by our doctors, our psychiatrists, spoken for via stereotypes in the background. So stepping into this space, I think, is a really powerful way to push back against that tendency of silencing that often happens by ourselves, but also externally.

[00:35:09] Aaron Goodman: And Sins Invalid afforded people a possibility of coming together with people with disabilities of all kinds. And you noted MCS masks, people wearing MCS masks and people with other disabilities and lots of different kinds of people. Makes me think often people share with me that they've, in spite of the fact that people with MCS account for, according to some studies, some really credible studies, over 35 percent of the population in the U.S., some people share that they've never had a conversation with someone with MCS before. I'm thinking about what bringing people together can do. Yeah, and I think people are finding that online a lot.

[00:35:54] Shayda K.: I'm glad you mentioned online because I think—I don't think—there is anything lost when we come together in digital space, and I think there's a lot of power to the act of coming together, whether it's in person or online. There are disability community members that I love and friends that I have that I've only met online. I've never met in person. I'm grateful that you are naming and celebrating the validity of online community space, particularly given the pervasiveness of ableism. It's beautiful. It's necessary.

[00:36:38] Aaron Goodman: Yeah. And I'm talking about storytelling and I'm imagining people with MCS, what kinds of stories people could create in different ways. I wonder if you have any practical steps for folks who may be interested in taking that step towards storytelling.

[00:36:57] Shayda K.: Oh, wow. That's such a good question, Aaron. I know this might not be the most—I think the most helpful way in my mind immediately went to journaling, but I'll give a few alternative options. But whether it's in the space of journaling and writing, whether it's in the space of recording yourself speaking or reflecting with a trusted friend and then writing or recording afterwards. One of the things that was really powerful to me was how in the process of telling my own disabled story, memories from when I was a young person and memories from when I had access needs denied in college—those were the memories that were flooding up when I first tried to do this work. So I would invite folks to look both at the points of trauma, but also the points of rebellion and love and empowerment that are coming from your body mind.

I think it's important to have a balance. But I would be disingenuous if I didn't say that the harm, trauma, and hurts were the first things that came up for me when I started storytelling.

[00:38:13] Aaron Goodman: On the idea of witnessing, there's first the sharing. In your view and experience, why is it helpful and important to witness? Is it the education piece for non-disabled people, or is it more about creating community and solidarity among people with disabilities?

[00:38:36] Shayda K.: Yeah, I think it's both. The primary role isn't so much the educating, but the creation of community.

What I noticed for myself and other folks who’ve attended a Sins Invalid show, watched their work online, read something by another disabled person, or watched a TED talk by a disabled person, is that the act of witnessing tells us the ableist narratives we've been taught are lies, period.

That joy that we're not the only ones, the realization that our body-mind stories have value, and that the silencing has been hurting us are amplified when we bear witness. Those are the spaces that are opened. And absolutely, yes, it is a form of welcoming to the non-disabled community. You might know of other systems of oppression like sexism and racism, but you may have never heard about ableism, and it too will impact your life.

But more than anything, my first moment of witnessing was this mind-blowing realization that I'm not the only one. I'm in a digital space and I have found the people. If my majority norm was non-disability, witnessing allowed me to see that there's more community out there than I thought.

[00:40:15] Aaron Goodman: I want to ask you, I'm witnessing, and maybe others are, maybe you are, I'm not sure. The pushback, at least online and in person, against what people call the left or against transgender people. I've even experienced people who I really respected in my own workplace talk about wanting to support dismantling ableism, but then saying it's too much of a burden or an inconvenience and they're not willing to do it, even though it excludes people with disabilities. I found that really challenging and puzzling, difficult to contend with. Do you think there is any pushback against inclusivity for people with disabilities that you see and experience these days?

[00:41:10] Shayda K.: Oh my goodness, yes. The answer is yes. The narrative of burden is so important. It's such an old narrative associated with disabled body-minds. Disability was actually taxed, like the ugly tax in the U.S. and specifically in Chicago, where a physically disabled person sitting in public was a burden and they were taxed.

My first reaction to your question is frustration because this is such an old stereotype that's being replicated. I'm noticing this in the classroom when I hear from students that their access needs are being denied because their accommodations are seen as too much of a burden.

The response to that is often, well, we're just not going to do it. I'm definitely seeing pushback and resistance to cross-solidarity movements and to creating truly interdependent classrooms at the university because of this narrative and stereotype that disabled people and their access needs are a burden.

[00:42:37] Aaron Goodman: Would you like to read your invitation?

[00:42:41] Shayda K.: Sure. I would love to. This is the end of the book, and this was the hardest part to write. It's called, "You are Invited." Dear Giddy Dream Maker, Dear Future Seeker, Dear Kripken, what direction will your yet-to-be map take you? How will you support your body-mind and the body-minds of others as you embark on this journey? What elements are a necessity in your expression of body-mind reclamation, recognition, and storytelling? How will you integrate disability justice into the practices of your everyday living and organizing? You play an active part in creating Crip Centric, Liberated Zones and micro-cultures of love. You do that. Pause to ask yourself what your micro-culture of love looks like. What does it feel like? How does it nourish you? How can you create a path of interconnection between your place of flourishing and the next person's? What are the gifts only you can bring? I end with these questions and offer them to you as starting points. They are the fledgling stuff that has created space for all our disabled queer of colour change-making. What other questions and ponderings does Sins Invalid motivate you toward? Imagine yourself sitting alongside them. What Crip-ed out futures do you want to dream up together? May you, dear one, write the next book, and the next, as we continue to move together toward our collective body-mind liberation.

[00:44:32] Aaron Goodman: Thank you so much, Shayda, for talking with me and sharing all your knowledge. I've learned a lot and it's been really fascinating.

[00:44:40] Shayda K.: Thank you so much, Aaron, for the invitation and the space. This was a true joy.

[00:44:45] Aaron Goodman: You've been listening to the Chemical Sensitivity Podcast. I'm the host and podcast creator, Aaron Goodman.

The Chemical Sensitivity Podcast is by and for the MCS community, the podcast is generously supported by the Marilyn Brockman Hoffman Foundation and listeners like you. If you wish to support the podcast, please visit ChemicalSensitivityPodcast dot org. 

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The Chemical Sensitivity Podcast and its associated website are the work of Aaron Goodman and made possible with funds from the Marilyn Brockman Hoffman Foundation. Supporting efforts to educate and inform physicians, scientists, and the public about Multiple Chemical Sensitivity. 

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