Alex Locust talks about living as an amputee and creative ways to empower and have fun with the disability community. Alex Locust is creator of Spill the Disabili-Tea, a vibrant, fun and interactive experience for the disabled and advocates. It puts a twist on the common medical model by focusing on humor, and a colorful space to make living with a disability more about community and connection rather than a clinical and dry experience.
Alex: 00:01 I was born with a disability. I've grown up with plenty of experiences where disability is talked about in a way that's pitying, treating disability as a burden, limiting. It's always legalese or accessibility as a requirement and not really acknowledging any of the benefits, the assets, the magics, the generative power of disability.
Gavin: 00:31 Welcome, to the What Origin podcast. In this interview, we'll be interviewing Alex Locust. You can find out more about him at glamputee.com. That's g-l-a-m-p-u-t-e-e.com. Alex is a disability advocate and hosts the event Spill the Disabili-Tea, a community effort to bring people who are disabled together in a colorful and friendly environment.
Gavin: 00:57 You can find out more about the podcast at whatorigin.com, or join our Facebook group at Facebook.com/whatorigin.
Gavin: 01:05 So, without further ado, let's jump into the interview.
Gavin: 01:09 So, I'm here with Alex Locust, creator of Disabili-Tea, an inclusive event for people with disabilities, and allies. Really anyone can come, but why don't you tell me about how you created this Spill the Disabili-Tea, why you created this and how you think it helps people, or why you think it's important to have these type of events.
Alex: 01:34 Yeah, absolutely. Spill the Disabili-Tea was my answer to a lack of nuanced conversations, or community oriented experiences around disability. I was born with a disability. I've grown up with plenty of experiences where disability is talked about in a way that's pitying, treating disability as a burden, limiting. It's always legalese or accessibility as kind of a requirement, and not really acknowledging any of the benefits, the assets, the magics, the generative power of disability.
Alex: 02:21 Being in the [San Francisco] Bay [Area], I've had the privilege to train under some really amazing mentors and come into contact with disability justice advocates where I've learned about the beauty of the disability justice movement, and know in myself I have the passion for sharing this message, and I'm an extrovert to a fault. I'm happy to do community work and anything around something that impacts me, and I feel like it isn't something that's talked about, so it's a community building exercise, really. We come together, we chat, I spill the disabili-tea.
Alex: 02:59 I'm kind of doing a riff on black culture, on black-queer vernacular, referencing this idea of tea being the truth, spilling the tea, spilling the truth, sharing it with good people in your life, people you're close to. For me, my tea is my disability and I'm happy to have fun, be playful, educate, lecture, but also empower and activate so that people feel like this is a conversation they can have with other people. And it's not something where you need a Masters, or you need to live with the disability, or be a professional speaker to advocate to make spaces more accessible and inclusive.
Gavin: 03:43 It looks really colorful. I've seen support groups before, been in them, and it can be a hospital or some environment. It's kind of gray walls and somber. So, it looks like it's also about having fun. Giving people a chance to be themselves, but have fun.
Gavin: 04:06 So, do you feel like part of it is creating that colorful atmosphere? Maybe it's just where you host it, but a more fun, friendly environment rather than what you get in a clinical setting.
Alex: 04:20 Definitely. We could probably have a very excessive conversation about the medical model and how medical settings don't lend themselves to anybody feeling very open and connected. That sterile environment isn't really conducive to connection, and growth, and joy. I kind of push back against that. Whether it's through colorful flyers, or painting my nails bright colors before I go, having silly gists, and corny jokes.
Alex: 04:59 I say that in my introduction. I'm going to make bad puns and we're going to watch fun videos, and it's not too diminish the trauma or erase the pain or glaze over the oppression and marginalization that disabled people experience. It's more to add a roundness to that discussion so it doesn't feel like it's just something that's always inherently sad. Disability is a way that people live their lives, and it's something that adds a sense of identity to me, to people I know. So, when we can have fun with it, it makes it feel less stigmatized, less something where people are uncomfortable. If everybody felt like it's that after school special where it's, “Now we have to talk about disability,” people feel their walls go up or they cringe or hide away.
Alex: 05:52 want people to leave feeling like, “Oh I can have a conversation with a friend on a Tuesday about disability,” and it's just the same as how a lot of us are working to do better about talking about race and gender and sexual orientation. Disability is one of those things that we can talk about, and it doesn't have to be kept in the shadows. We can be loud and take up space as we advocate and lift up these voices and these experiences.
Gavin: 06:24 Yeah, I'm a nerd about things like tea has something called L-Theanine which relaxes people. I don't know what kind of tea you serve. A little bit of caffeine. Coffee can make people jittery. You've got to be careful, but tea is also a good standard that we've used for a long time. Kings and queens have tea. I think it also creates a nice environment where you can talk, but you have something to hold and communicate. You strike me as a branding person; you come up with these cool brands. So, what you did with your situation is you call yourself "glamputee". You've hi-jacked what people call you. You've at least said, “This is me. I'm glamputee.”
Gavin: 07:14 Why did you create that? Also, what does that mean to be a glamputee? What do you want for your specific community to know how to deal with such an obvious thing? If, you're amputated, it's pretty obvious people see it. How can people own it and make it their own term?
Alex: 07:39 Yeah. The visibility piece is such a crux of my experience. I've had 28 years of people consuming my body in a myriad of ways. The whole gamut of positive and celebratory, to really malicious and toxic. In a way, as you mentioned being loud and colorful part of my inherit humor is coming up with a few corny titles and having fun with words and playing around with language. Glamputee rolls off the tongue a little bit. I think it's a reclamation of this idea of my disability is not going anywhere; people are going to see me as they're going to see me. So rather than being passive in that process, I wanted to take the reins and have fun with it. Own that my experience is unique.
Alex: 08:42 We're in this social media age where branding is key, and part of my insecurities or part of the challenges of stepping into this role and this mission, this vision, is feeling like, "Oh well, I'm sure someone's done this before. Or who am I to say I'm great at this thing, or whatever," but I'm the only me. This is a practice, a self fulfilling prophecy. Almost faking it till I make it, like I'm not always glamorous, I'm not always crushing it, but I do love this aspirational idea of being the most glamorous and flamboyant version of myself whoever that can be.
Alex: 09:29 And that's something I want to model. I want to be a possibility model of owning good, bad, and ugly as something and doing it with intention, and that's where the glamour comes in for me. Glamour doesn't have to be expensive; it doesn't have to be rarefied or exclusive. It just has to be something where you're owning it and you can enter a space and go to a dance party and tear up the dance floor or lead a session or be in a fashion show. Any of those things I've had the privilege to do I try to do with my full self, and in the most charming and glamorous way I can.
Gavin: 10:10 Growing up how, did that shape you as a person now.? I did sports and such, and it seems like having one leg may make that difficult. Do you find that it drove you into arts or different things, or did you try and be as active and involved as you could? What was that experience? I hear people that grow up, and then when they reach age 4 or 5 or they go to school and they're like, "Oh I'm different."
Alex: 10:42 Yeah, I constantly take every chance I can to express gratitude to my parents and the way that they raised me. They made a really important decision when I was born to not have me amputated as the doctors suggested because I couldn't consent to that. Again, that's already flying in the face of the medical model of trusting the doctors as experts. They said, "Listen, this is how he was born, and we want him to make a decision," and I think that that instinct really guided their parenting and the way that I was raised.
Alex: 11:23 Both of them being very athletic people, I participated a lot in sports when I was younger, and they helped me understand the more social model of disability where these environments are not meant for you. They're weren't built for disabled kids to participate equally, and you're going to have to figure out how to adapt, and we're going to have to call ahead and write letters and advocate, but that doesn't mean you shouldn't be able to participate and it doesn't mean that you can't. It just means you're going to have to do so in a way that works for you.
Alex: 11:59 I grew up skiing competitively. That was the first opportunity that I had, doing adaptive skiing, to meet other disabled kids. I hadn't really before that, so that environment actually made me feel less different than I probably would have if I had never participated. And that fire of finding champions, finding cheerleaders, finding people in the community who understand that disabled people deserve the same things as others. And the ability to feel community, to feel connected, to feel empowered in whatever they want to pursue. That lit a fire under my butt and really taught me early on to be tenacious in whatever I tackled.
Alex: 12:48 Sports was definitely a start and then as a young adult, I had a unconscious understanding that I really had to excel and succeed in order to, probably not in the most healthy way, but there's a dark side of feeling marginalized and very much of that I internalized as needing to accomplish or overachieve. It was honors and AP and plenty of extracurriculars and leadership positions, and I think I naturally lean towards those things as an ambitious person.
Alex: 13:30 But I wonder, as an adult, I reflect back on that and I wonder if part of that was me understanding that I'm going to have to work harder so that I don't just get lost in the shuffle or that I don't get left behind because people aren't necessarily inherently looking out for me to be in the fold, and so I needed to make a name for myself. Show people I deserve to be somebody that people think about or people remember.
Gavin: 14:00 Right. There's definitely a lot of disabled people, and our government doesn't do the best job, but they ideally get help. Being able to be self-sustaining. Money doesn't really have feelings. Being able to be in school or have a job or do those things and sustain yourself; obviously it feels really good, and it's unfortunate that some people may not get all the assistance they need. Especially in the Bay Area. Let me just put it this way: In certain parts of the country if you get assistance, it probably will go pretty far. In the Bay Area, it's pretty difficult to live off of just disability.
Gavin: 14:43 So there's an innate push to be like, "Okay I need to do something else, I need... How am I gonna." At the base, I understand all your extra "Let me push; let me go harder," but I think there's also that pride in being self-sustaining. I can speak for myself.
Gavin: 15:01 That's a first... I have to revisit that. It's the first time I've heard of somebody, and I don't know what the situation was, where the doctor, I assumed it wasn't life threatening, but the doctor's like, "We should probably do surgery," and the parents say, "Well, this is a decision the child should make."
Gavin: 15:21 At what age did you... First off that's pretty awesome as parents, but of course if they have been told either it's amputate, or he's not going to make it, they would have done that right. So, at what age were you like, "Well, that's the thing to do. It hasn't developed the way it should and that's what I want, and I'm going to go in to do that." I can't imagine being 6 or 7 years old and being told, "Now you gotta make this decision."
Alex: 15:52 Yeah, I think again the secret word of the day is me ranting about the medical model, but it is something where the way that my body was born was that my left leg had somewhat developed and wasn't going to continue growing. It wasn't a late bloomer or something that's just going to come out of retirement. It was what it was, and we tried to make prosthetics work. It wasn't, and that's what they said would happen.
Alex: 16:26 Again, that could probably be critiqued or questioned, but eventually when I was 13, they told me I was at a point where I was plateauing. And if I wanted better prosthetics, if I wanted a better gate when using a leg, I would need to get it amputated. So, when we think about how coercive these systems are, I'm 13 and frontal lobe isn't fully developed and barely experiencing any independence or autonomy as an adult. I don't have education around all the options available to me or how people live with or without prosthetics or what may come of these things. That was the time that we decided to move forward.
Alex: 17:12 It's challenging to think about and reflect on because as an adult I tend to not wear a prosthetic. It doesn't feel like my body. I don't connect with it. It's not how I like to present myself. So, we made a pretty serious medical decision that did involve a lot of trauma. Again, based on professionals' insight that I don't know that I'd necessarily make that same decision if I went back, knowing how I live my life today.
Gavin: 17:41 Prosthetics are great, but they do have to produce them more than one at a time, unless you have a lot of money. A side question, quick question: I see videos or news articles or things like this new type of prosthetic or that. Are you ever inspired by what technology is creating? Do you think there is something you would feel comfortable with, or do you think it's more like, "This is me. This is who I am. I don't want to attach something."
Alex: 18:12 Yeah, I mean part of the challenge that I'm finding as I'm advocating for disability and really trying to champion disability justice is making sure that I dismantle this monolithic idea of disabled people get each other's experiences. I don't know what other amputees want. I know that I certainly have my personal perspective. I know that I also have a very different journey.
Alex: 18:39 Some people have lost limbs and have gone most of their adult life having two legs, so losing one, that's a very different relationship with limbs and limb loss than mine. So I don't really have a desire to have two legs because I never did have two. Whereas somebody who had two legs might want that experience back or regain that experience.
Alex: 19:08 I'm inspired by people who feel that they're able to live the life that they wanna live through assistive technology and things that make their lives feel more empowered and autonomous. I just find it a little dangerous to rely on technology to solve all the problems when really, as you've alluded to, prosthetics are very expensive. It's very tied to the healthcare system and who can afford them, and the more you push technology, the more expensive certain things get.
Alex: 19:45 A lot of people who... you see those news articles or you see the running blades, those legs with people in the Paralympics who are running and crushing it. Everyone's like, "Do you have a running leg, do you this or that," and it's like, "Girl, no that's expensive." I don't have the money for that, and so when we place all our stock in these expensive options to "fix people's lives" we're still ignoring the fact that I could have the most high tech prosthetic in the world, but people could still look at me funny in public. People could still ask me what happened to my leg before they ask me what my name is.
Alex: 20:23 People might discriminate against me in a hiring process or assume that I can't make decisions for myself because of the way that we treat and talk about disabilities. When you focus on technology to fix things, or ignoring the fact that society and culture can actually be more disabling than people's impairments themselves.
Gavin: 20:47 How do you feel that mental health fits in or the lack of connection fits in to disabilities in general and also marginalized communities? You're involved in the queer community and different things like that. Why do you think it's important to address that and maybe why are we... how are we missing that component in society.
Alex: 21:09 Yeah, one of the major tenets of disability justice, and when I refer to the tenets of the framework, I'm referencing Patty Berne and Sins Invalid, the disability justice oriented performance arts group, and they focus a lot on this idea of intersectionality and how it's not just about disability; it's about the other marginalizations or other identities that intersect with that.
Alex: 21:39 I can speak to my experiences of biracial queer man with a disability; having multiple margins can be really tiring and exhausting and emotionally draining. So, when we think about mental health and we think about people within the disability community, we also have to consider not just how feeling socially isolated or experiencing micro regressions, potentially having mental health disabilities, can be challenging, and really necessitate mental health support.
Alex: 22:16 We can't ignore the fact that there are women with disabilities in a #MeToo era, or people with disabilities who might be undocumented with ICE, and these very traumatic immigration and deportation practices in our administration. Or you could be a sex worker with a disability. There's a lot of communities that really can be marginalized within marginalized.
Alex: 22:50 I think in general mental health support is something that doesn't feel accessible to a lot of people, and then you have to think about is the mental health support that's available, which again is rare sometimes, is it being provided by somebody who has the cultural humility to understand the little differences between the counselor or the therapist and somebody with a disability, do they have a disability themselves.
Alex: 23:22 It's very rare, I know for me, to see therapists with physical or visible disabilities, and that's a bigger conversation about the pipeline and getting a higher education degree and being able to afford to live in the Bay and work in non-profit settings and things like that. I would just say in general, thinking about this wellness idea of, you mentioned earlier, not being totally focused on the negatives. Disabled people can live joyous, high quality of life. It's just about having community. It's about feeling like you're seen and heard and loved and that you're valid and that your body may be going through things and you may face challenges, but those things don't mean that you don't deserve to be healthy and happy.
Alex: 24:14 So, it's about challenging people to move beyond this idea, or leave behind this idea, of fixing something, that can communicate that somebody has something inherently broken, and more of an idea of how do we heal and celebrate and lift up and connect in ways that people don't feel as though their experience is the reason why they're feeling bad. We live in a culture where most times people are made to feel bad because they're different rather than celebrating that.
Gavin: 24:46 Thank you for listening to this episode of the What Origin podcast. You can find out more about Alex Locust at glamputee.com, and you can find out more about the podcast at whatorigin.com and Facebook.com/whatorigin.