In this episode of the Western Wayne News Podcast, life coach, speaker, trainer and consultant Dr. Amy Sekhar speaks about her recent transition from being in a tenured academic teaching position to engaging in advocacy with a focus on equity work and transforming community well-being. Amy shares about how she’s lived in to her identity as a disabled person, and what it means for the Richmond and Wayne County community to become a place that is welcoming and inclusive for all, regardless of ability.
Photo courtesy of Susanna Tanner Photography.
Transcript
Kate Jetmore: My guest today is Dr. Amy Sekhar, a consultant, public speaker, facilitator, and certified professional coach. Prior to shifting to coaching and equity work, Amy spent 10 years as faculty in higher education, where she was a passionate advocate for the value of co-creating learning spaces that introduced students to perspectives and lived experiences that challenged their own ways of being, thinking, and acting in the world.
She left her tenured academic position to engage in systems change advocacy and activism. Although she was born and raised in Colorado, Amy has lived in France, the Pacific Northwest, and New England. She currently lives in Richmond, Indiana with her husband, where they founded The Wellbeing Workshop, a collective whose mission is to transform community wellbeing. Welcome, Amy. Thanks so much for joining me today.
Amy Sekhar: Thank you. It’s good to be here.
Kate Jetmore: You first came on my radar through a series of photos taken by Susanna Tanner, which have been described as something out of Vanity Fair. They’re striking, they’re daring, they’re unexpected. Tell us a little bit about how that photo shoot came to take place.
Amy Sekhar: Yeah. So I actually had been thinking about doing a photo shoot for a while. I’m in my late 40s, and I have been doing a lot of, I think, that internal work that some of us do as we age. I turned 40, got tattoos, really started to do a lot of that work. In part of the work that I’ve been doing in terms of ableism, I realized that body image was something that I really needed to work on.
So for me, just putting myself out there in photographs and seeing myself, my whole body, was something that was challenging and also at the same time empowering for me. So it was something that started with that spark of an idea and then transformed, morphed into something bigger.
Kate Jetmore: Do you want to describe one of your favorite photos from the shoot?
Amy Sekhar: The, I guess, lead shot is of me in a black dress and the bodice is tulle, lacy thing. Then it’s a fit and flair skirt with feathers on it, black feathers. So the entire thing is black. It is a dress that on an averaged size person, so I am a little person, would probably go above your knee. On me, it goes below my knees.
I’m also wearing these ox-blood red orthopedic boots. So there’s this disconnect between this high fashion look. I’ve also got a really powerful makeup. My eyes … I told Whitney Mosey, who did my makeup, I said, “Please make my eyes look like I’ve been on Glow Up on Netflix,” that I want that look. I want hair that looks like pink. I love pink. I love her balance between hard edges and soft edges.
So that was the look I was going for. For me, just … My service dog is there, Jules. He’s not in harness at that moment, but I just look in … I guess in that way, when you think of models, I just look very far off into the distance. I don’t know what I’m thinking, great thoughts, and Jules, my service dog, is looking at me with this deep commitment.
So there is this just really powerful … I don’t know what you would call it, but this powerful experience that you get when you’re looking at that picture. So for me, if this were a Vanity Fair spread, this would be the cover, that it’s powerful. It’s beautiful. It’s a way we’re not used to seeing disabled bodies.
Kate Jetmore: Very well said. Very well said. Well, I stumbled across those photos scrolling through Facebook, and was so blown away by the photos, of course. Susanna Tanner’s work, you in the photos, your dog in the photos, the styling of the photos. But also, Amy, the writing that you did that accompanied the photos that described them from your point of view was also powerful and beautiful.
In one of those posts, you referred to something called cripplepunk or cpunk. The movement has been defined as “prioritizing the experiences of disabled people over the pressure to conform to the standards that able-bodied people uphold”. I’d love to hear you talk about how this ideology speaks to you and how all of us can live the movement in our own lives.
Amy Sekhar: So this is a really packed question, and I could talk about it for a long time. I think for me, one of the powerful things about the crippunk movement is that it was for … Ty Trewhella, who started it, specifically started it for physically disabled people by physically disabled people.
I think the emphasis on the physicality of it was that it’s that visibility of our mobility aids or all of the various things that inhabit our space, and how because of that very visible difference, we are expected to perform in specific ways, particularly because of the ways our bodies are different.
For me, as somebody who’s a little person, who has not always used a wheelchair, but has used crutches, a scooter, a service dog, and now a wheelchair when I’m out and about, that really is a powerful concept that I don’t owe any sort of body conformity to the able-bodied world, that that idea that this difference is a negative, where, really, disability is just one more way for the body, mind to be … That we all exist differently in space and that we’re claiming that and get to define that for ourselves.
I think the other thing, when I alluded to turning 40 and getting tattoos, and if you saw me right now, you’d see I have turquoise hair, is that I think disabled folks, particularly of my generation, were raised to be a specific way, to be … One of the things Ty mentions is to be the “good” cripple, the one who performs what able body want us to be. They want us to be nice, they want us to be inspirational, they want us to overcome.
Really, what crippunk does and what Ty was asking was for us to be fully human, to say we smoke and drink and have tattoos and curse and experience the full gamut of humanity, and we also should not be asked to erase our disability in the meantime.
I think coming back to the photo shoot, the idea for me when I was working with Susanna is that I really wanted to make sure that the full complexity of how I live in this body was visible, that my wheelchair was in it. Sometimes I’m in my wheelchair, sometimes I’m next to it. Jules is there. Jules is sometimes in his harness, sometimes he’s not. That’s how I move through the world, and I didn’t want to erase any of those parts of me like I’ve been asked to do it in the past. So that to me was really important.
Kate Jetmore: Yeah. Yeah, it’s really powerful hearing you talk about it. It’s powerful hearing the words of Ty, who you’ve referenced and who started the movement. Once I discovered those photos on Facebook, I found myself circling back to your profile to see what else was there. I learned about Judy Heumann this past week, thanks to you. For our listeners out there who’ve never heard of Judy, who was she?
Amy Sekhar: Yeah. So Judy Heumann just passed away this last weekend. For the disability community … And, unfortunately, I think she’s not gotten the recognition she needs from the larger community, but certainly for the disability community, she is considered the mother of the disability rights movement. She had post-polio syndrome, and so became disabled at a very young age, used a wheelchair most of her life. There were no laws or legislation that protected the rights of disabled folks.
So she went to college to get her teaching degree and was actually denied a position by the New York Board of Education because she was disabled. And so, she’s the first person who brought a lawsuit forward on the basis of disability in 1977.
She also was an essential organizer for the 504 Sit-ins, which I believe remains the longest occupation of a federal building by any group of people. So for 28 days, a group of disabled people occupied a federal building to get Section 504 of the Rehabilitation Act signed, which was really the first piece of legislation that really impacted us with access to federal programs and programs receiving federal funds. It’s partly why students with disabilities get free and appropriate public education. Then, of course, she was instrumental in pushing for the Americans with Disabilities Act, which wasn’t signed until 1990.
I think that is another thing that I would really like to highlight is that the Americans with Disabilities Act is a disability law. I mean, I’m sorry, of course it’s a disability law. It’s a civil rights law, that it is, along with the 1964 Civil Rights Act, it is a law that actually ensures that people with disabilities have civil rights.
And so, for me, in the ’90s, in 1990, and it didn’t really … It took a while for it to trickle down, of course, most of my schooling had been done without the Americans with Disabilities Act. So I did not have the right to many things. Segregated education was still commonplace. It’s way more commonplace than it should be still.
I think, for me, Judy Heumann, along with people like Ed Roberts and Justin Dart, and all the big ones, are people that we wouldn’t … The disability community wouldn’t have so many pieces of legislation without their activism, without their policy work. Judy Heumann went on to work as part of federal agencies. She’s done a lot of work.
I think what’s also fantastic about her is that she made it her life’s work to give people disabilities access, and she was a fantastic mentor to young people with disabilities. While she was radical in her early career … If you’ve seen Crip Camp, you’ll learn a lot about her story.
I think she recognized that while she was still pushing for advocacy and policy change in legislation, this next generation of activists who were born at or around ADA or after ADA live in a world where they expect to have rights. So they’re more radical than she was.
I also would love for people to know that I wouldn’t be here without people like her. I wouldn’t have had access to the education I have if people like her hadn’t come before me, and that people like me are hopefully doing the radical work that we’re doing.
So for me, she’s just a foundational piece of the puzzle. I met her when I was starting on my advocacy work. I saw her get arrested in 2017 in Washington, DC, saving the Affordable Care Act. For me, it was a foundational thing.
Kate Jetmore: Well, Amy, I want to pick your brain a little bit more about what you’ve made just a tiny reference to, which is how Judy Heumann touched your life personally. It is interesting about your generation, this younger generation, and how … There really is a big difference. I’m wondering how things unfolded in your life.
You made reference in what you just said to I wouldn’t be here, or there wasn’t a civil rights law in place when I was a child. So were you aware of that?
Amy Sekhar: Yeah.
Kate Jetmore: How aware were you of what rights you had, what rights you didn’t have, and at what point did Judy Heumann come on your radar?
Amy Sekhar: I think that’s a tough one because disability history isn’t taught in schools. As somebody born with their disability, I wasn’t raised by disabled people. So it wasn’t something I really learned about. Because there was no legislation protecting my access to programs or public spaces, my parents actually said, “Look, this world isn’t made for you. This world is made for tall people, and you have to learn to get by.”
And so, my reaction to that, particularly as a young person, was I have to figure out how to do things by myself. Nobody’s going to do them for me. I have to do them. I think, unfortunately, that’s where this idea of disabled people overcoming comes from. So there’s something wrong with my body. I have to do the work to overcome, whereas, really, it’s structural and attitudinal barriers that are stopping me from getting things if the counter’s too high. But what that did to me was really focus on, okay, look, I have to solve these problems.
I think what really shifted for me was she didn’t come on my radar at all until … This year I turned 40 was just a really big thing for me. It’s when I decided to leave my academic job, particularly because academia is a very ableist space. It’s a space that teaches you to push your body to its limits, to overperform. When you already have a body that’s not very nice to you, that’s really hard. And so, I told myself I would rather work on change outside the system than within the university system. It’s just not something I can do right now.
So I took a risk and just left knowing that I have a PhD in French Literature. What does somebody do with that if they’re not going to go to a different university? I just started exploring different opportunities and I started working in the disability advocacy field for the Indiana Statewide Independent Living Council. The executive director there actually sent me to this conference that happens every year.
For me, that was the first time I saw a conference full of disability activists. The independent living movement is very activist-oriented. And so, for me, just being part of the independent living movement was … I learned that I had a history, that I had a history, that my people have a history.
Since then, as I continued to do my work, I left that position and I went to work for an equity assistance center, which is more broad beyond disability. I’ve realized I’ve also been able to critique movements. Judy Heumann was part of the independent living movement, ed Roberts.
And I’ve also learned that as I’ve become more aware, disability history and the story of disability involves Black and Brown people with disabilities, the LGBTQ community with disabilities, that there have been so many people doing this work who aren’t being acknowledged for their role in the disability history, the disability movement, disability justice, which is a movement that is gaining traction now, is specifically an intersectional, collective, cross-movement ideology that asks you to work for the collective wellbeing and to be led by people who are the most impacted.
And so, for me, to get from that place, Judy Heumann remains this huge figure for me, and she was building this foundation for those of us who come after to go further.
Kate Jetmore: Yeah. Well, what you’re describing is the path, your path. So your path involved academia. Your path involved leaving academia. Your path involved blazing a trail that wasn’t there before. Ultimately what it did was it led you to Richmond, Indiana where you and your husband have founded The Wellbeing Workshop. Let’s talk about The Wellbeing Workshop. This is the collective that the two of you have co-founded in Richmond.
Amy Sekhar: Yes.
Kate Jetmore: I noticed on your website, there’s a clear focus not only on mind, body, and spirit, three words that we often see when describing the whole person, but also notably community. Where does community fit in the definition of a healthy life?
Amy Sekhar: Yeah. So for me, the notion of healthy community and interdependence actually comes from the disability justice movement and the idea of collective wellbeing. The disability community, particularly the one that involved Black and Brown and LGBTQ folks is one of interdependence and mutual aid.
So I was just like, in a community, in a world that has experienced this global catastrophe, this global pandemic, how do we make sure the momentum of community care and community health is really integral to the place we live?
I had been commuting to Indianapolis for most of my career. We’ve been in Richmond for a while. As the pandemic hit, my husband and I both had separate goals. I had my own little thing going on. As we started to roll around with this, we thought, well, what would it look like to build a place, that’s why we called it a workshop, where there’s this idea of this collective coming together of what we call practitioners and co-actionists, of people who have this idea of we want to build community?
Some of us are coming into this space with a particular skillset. Others of us are coming with a different skillset. How do we support each other with the skills that we have and how do we, by doing so, also support the wellbeing of the community in which we live?
So we’re really at the infancy of what we’re doing. We’re in the process of trying to file as Richmond’s first benefit corporation. So really the idea of a benefit corporation is that part of your mission is the benefit of the community and the people affected by it.
So for us, it is like how do we build an infrastructure, and just a social structure too, that can be used by community members to focus on their whole experience of their selves. I think we’re taught in this society that our mind and body and spirit are separate categories. And what would it look like if our whole person could show up, if we could go to a space where Jeevan is doing holistic medical acupuncture, I do coaching? We have a nutritionist who’s also culturally responsive. So people from different backgrounds are learning to nourish their culture and their bodies.
One of our dreams is a pollinator garden where we’re going to hopefully have bees there, where we can have honey, a food forest. So like an orchard where people can … So, really, how do we build a self-sustaining little place where you’re welcome here and we want you here?
Kate Jetmore: It’s really exciting. Your vision is so exciting. I’ll tell you what stands out for me. It’s so dynamic what you’re describing. You’ve used words like proactive, building, action. The fact is that that is what it takes. That is what it takes, because we all know how to scroll with our thumb on our screen and we all know how to have an opinion about something in a conversation with our voice. But the only way that things will get better, the only way that communities will evolve and thrive and survive is if we take action. So that’s what stands out for me.
Amy Sekhar: That’s really important. I think you’ve hit something that we’ve talked about is how do we get the community and people who are interested in working with us, is how do we get beyond this idea of paying it forward, but instead of investing in this community?
So if we say as part of the workshop … If someone comes and said, “I want to build this skillset that I have,” and so we facilitate making that happen, the answer isn’t also going to say … Part of the deal isn’t, “Okay. What are you going to do? How are you going to pay it forward?” It’s how are you going to invest back into the community that’s supporting you?
What are you going to do with these gifts and skills that you’re going to acquire? How are you going to bring that back here? Not that we’re going to make you sign a contract, like you’ll never leave, but it’s also to instill that sense of I believe in a community who believes in me.
I think when we think about communities like Richmond and why are people leaving … Jeeven and I have made the very pointed decision to not leave. Neither one of us are employed by an employer in this town, and yet we have decided to stay and to build a community and to invest in a community that we think is worth investing in.
And so, that’s what we’re hoping to build. I mean we also want this to grow bigger than we can handle. We want it to belong to the community.
Kate Jetmore: I love the description of what you guys have created and are creating. Unfortunately, we’re going to have to start wrapping up. But, Amy, as you and I were conversing via email, as we were setting all this up, I was struck by the quote that you used as part of your email signature, from activist Alice Wong, which begins, “Disability is pain, struggle, brilliance, abundance, and joy.” Another set of powerful words in a very powerful conversation today. They’re words that I associate with simply being human. I wonder if that’s the point.
Amy Sekhar: It is. I think that’s what disability activists are really asking for, is that we get to exist as fully complicated human beings and that we are considered as such. So that when non-disabled people are acting in the world, that top of their mind is who also needs to be here? Who also needs to be fully human in this space?
And so, I think that’s the question I think that people at the forefront of disability justice are working on, is how do we work towards a world in which every single person gets to live fully in their humanity?
Kate Jetmore: Thank you so much, Amy, for being on the show today and for contributing your voice to the conversation. I really, really appreciate you taking the time to talk with me today. I wish you all the best.
Amy Sekhar: Thank you for having me. I really enjoyed it.