Interview with Dylan Mears, May 18, 2022

Louie B. Nunn Center for Oral History
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00:00:00 - Introduction

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Partial Transcript: Hello, my name is Mack Thompson, and today I'm here interviewing Dylan Mears for the Disabled in Kentucky Oral History Project. The date is May 18th, 2022, and we are in Louisville, Kentucky. Dylan, I'm happy you're here.

Segment Synopsis: Dylan Mears (they/them) introduces themself as a nonbinary Spanish major at the University of Kentucky, who hopes to receive a Master's degree in Spanish and go on to teach high school Spanish.

Keywords: Disability; Disabled; Education; Louisville (Ky.); Nonbinary; Nonbinary genders; Self-discovery; Transgender; University of Kentucky; Spanish class

00:01:45 - Disability terminology

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Partial Transcript: What terms do you use--to, like, just to get on more with the disability questions--what terms do you use to describe your relationship with disability? Like, do you use "disabled," "person with disability," something else, nothing?

Segment Synopsis: Mears talks about the way they describe them-self as disabled person and how current semantic labels don't represent their experience.

Keywords: Agency; Comorbid conditions; Dehumanization; Diagnostic criteria; Disability; Disability terminology; Disabled community; Disabled in Kentucky; Disabled people; Identity politics; Identity-first language; Infantilization; PTSD; People with disabilities; Person-first language; Queerness; Social justice; Stereotypes; Wheelchairs; Ableism

00:07:07 - Disability recognition and diagnosis journey

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Partial Transcript: So we talked some, I guess, already about, like, some of the disabilities that you have and stuff like that in passing. I was wondering if you would feel comfortable sharing a bit more of your journey with disability.

Segment Synopsis: Mears describes their diagnostic journey, which started with seeking a therapy letter in order to start hormone replacement therapy in high school, and grew into seeking more diagnoses and responding to declining health with community support. They discuss the benefits and drawbacks of receiving different diagnoses. They discuss how diagnoses can assist in receiving proper care and accommodations, but can sometimes cause lost of autonomy and rights, and explain the effort it has taken to balance these positives and negatives, especially as a transgender person who is on hormone replacement therapy.

Keywords: Accomodations; Agorophobia; COVID-19 (disease); Comorbidities; Diagnosis; Disability; Disability Resource Center (DRC); Disabled in Kentucky; Disabled people; Ehlers Danlos Syndrome; Healthcare; Hormone replacement therapy; Invisible disabilities; Medical ableism; People with disabilities; Postural orthostatic tachycardia syndrome (POTS); Service dog; Therapy; Transgender; Transgender healthcare; University of Kentucky; Accessibility

00:19:09 - Intersections of transness and disability

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Partial Transcript: I find it interesting how much you keep finding that your transness is impacting how you experience and are able to seek help for your disability, and I was just wondering, like, so do you feel that those two are connected in any way or impact you in connected ways?

Segment Synopsis: Mears discusses how their gender identity and disabilities have impacted each other and helped them in developing their sense of self and their relationship with their body-mind.

Keywords: "Brilliant Imperfection" by Eli Clare; Asexuality; Body-mind; Disability; Disabled in Kentucky; Gender roles; Identity; Intersectionality; Nonbinary; Sexuality; Trans; Transgender; Autism

00:23:33 - Disability and the COVID-19 pandemic

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Partial Transcript: I know we kind of strayed from this topic some, but earlier when you were sharing your story, it seemed like impact of the COVID-19 pandemic was definitely seen in your disability journey, and I was wondering, like, how that has impacted -- like, if you feel that that has impacted you and the disabled community, and if you would be interested in sharing a bit more of that impact.

Segment Synopsis: Mears discusses coming to terms with disability and finding the disabled community in the context of the COVID-19 pandemic. They discuss how COVID-19 is a major tragedy where many have died, and describe how eugenicist ideologies have been echoed in response to the pandemic. However, they do note that such a tragedy has led to some positives, such as accessibility options like TeleHealth which were previously rarely available, but became commonplace due to the pandemic, as well as them being able to find respite and resources in the disabled community.

Keywords: Agoraphobia; COVID-19 (disease); Contemporary eugenics; Coronavirus; Disability; Disabled community; Disabled in Kentucky; Disabled people; Healthcare; Inaccessibility; Mutual aid; Pandemics; People with disabilities; Spoon theory; Telehealth; Transgender; Accessibility

00:31:02 - Negative experiences with the medical field

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Partial Transcript: So you were talking some about, like, medical ableism, I guess, and difficulty accessing medical care and difficulty with doctors with accessibility and accommodations, and I was wondering if you would like to discuss that in more depth.

Segment Synopsis: Mears describes their negative experiences with the medical field, discussing how they are not taken seriously due to their age, gender identity, and disabilities; they say the only time they felt truly respected and understood at a doctor's appointment was when the doctor had the same disability as them. They mention that they are lucky to be White, as other racial groups also experience a lot of medical racism.

Keywords: Accessibility; Ageism; Disability; Disabled in Kentucky; Ehlers Danlos syndrome; Infantilization; Intersectionality; Medical ableism; Medical field; Medical malpractice; Medical racism; Medical transphobia; Medical trauma; Systemic ableism; Connective tissue disorders

00:36:49 - Disability, politics, and social justice

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Partial Transcript: I guess also, you talk a lot about, like um, I think you also often are bringing in a lot of political points.

Segment Synopsis: Mears explains why they feel that disability is deeply tied to political and activist spheres for them, and how they feel no choice but to partake in activism as a survival technique.

Keywords: Activism; Anarchism; Black anarchism; Classism; Disability; Disability benefits; Disabled; Disabled in Kentucky; Disabled marriage inequality; Government disability benefits; Inaccessibility; Leftism; Service dogs; Social justice; Structural ableism; Survival tactics; Ugly Laws; William C. Anderson; Ableism

00:42:18 - Accessibility in Lexington and Louisville, KY

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Partial Transcript: As someone who has lived in Kentucky for a long time, especially in Louisville, I was wondering how accessibility was with that and how the world around you--where you might be struggling if you're struggling to access and navigate that world that was designed for abled people, if you would want to talk about inaccessibility.

Segment Synopsis: Mears describes their experiences with (in)accessibility in Lexington, where they go to school at the University of Kentucky, and at home in Louisville.

Keywords: Accessibility; American's with Disabilities Act (ADA); Autism; Chronic pain; Gas prices; Inaccessibility; Lexington (Ky.); Louisville (Ky.); Postural orthostatic tachycardia syndrome (POTS); Section 504; Sidewalks; Structural ableism; University of Kentucky; Wheelchair use; Wheelchairs; Ableism

00:49:45 - Finding disabled community

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Partial Transcript: So what do you do to feel better connected with your disability and with that community? And is there any advice you would give to other people who think that they might be disabled or have a disability or are learning that they do or have gotten one?

Segment Synopsis: Mears gives advice on connecting to disabled identity and community. They discuss connecting with local or virtual advocacy groups, and the significance of finding a care network of other disabled people.

Keywords: Care network; Disability community; Disabled advocacy groups; Disabled and Ill Student Coalition (DISC) -- University of Kentucky; Disabled community; Disabled in Kentucky; Ehlers Danlos; Intersectionality; LGBTQ+ community; Mutual aid; Post-traumatic stress disorder (PTSD); Queerness; Spoon theory; Virtual communities; Disability

00:56:14 - Ableism in leftist and activist spaces

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Partial Transcript: I think that being a leftist, I guess--being an anarchist, being an activist, whatever -ist or -ism you want to insert--being all of that while disabled is something that is kind of overlooked.

Segment Synopsis: Though Mears feels that disability is deeply relevant to leftist and social justice movements, they argue that organizations and movements often overlook disabled people or are actively ableist. They describe, for example, when they helped organize a union rally, but the path that the other organizers decided to take was not wheelchair accessible for them. They note that often, they are expected to educate people on disabilities, but argue that abled people should educate themselves on disability instead of expecting disabled people to educate them on it.

Keywords: Accessibility; Activism; Anarchism; Anti-capitalism; Disability; Intersectionality; Labor unions; Leftism; Marxism; Police brutality; Social justice; Structural ableism; Union rallies; Wheelchair accessibility; Ableism