Diverse Voices of Tourette Syndrome
12/19/23 • 32 min
Join me as we explore the diverse intersection of Tourette Syndrome, culture, and identity with Michael Chichioco, a Filipino American medical student with a powerful story. In this episode, Michael opens up about his life with Tourette's, shedding light on the unique cultural challenges and the journey to understanding and acceptance. Tune in for an enlightening conversation that delves into the heart of living with Tourette's in a multicultural setting.
Episode Highlights:
[01:11] - Meet Michael Chichioco and discover the pivotal role of culture in his Tourette Syndrome journey.
[01:53] - Michael's personal battle with Tourette's – the early signs, diagnosis struggles, and cultural barriers.
[04:20] - A deep dive into childhood memories, understanding Tourette's, and family dynamics in different cultures.
[08:43] - Exploring the diverse reactions to Tourette Syndrome and the complexities within families.
[14:29] - The challenge of support and advocacy in varied communities and the significance of cultural awareness.
[17:35] - Discussing the urgent need for more diverse voices and perspectives in the Tourette community.
[23:41] - The power of representation: How diverse role models can reshape Tourette advocacy.
[28:07] - Uncovering the geographical and cultural diversity in the Tourette world – why understanding matters.
[30:14] - Michael's heartfelt advice for those living with Tourette Syndrome: Embrace and trust yourself.
Links & Resources:
● Tourette Association of America, Northern California & Hawaii Chapter: https://tourette.org/chapter/ca-no/
● New Jersey Center for Tourette Syndrome and Associated Disorders (NJCTS): https://njcts.org/
Remember, your story is powerful, and sharing your experiences can be the guiding light for someone else's journey. If you enjoyed this episode, please rate, follow, and share 'The Uptick' with others.
Join me as we explore the diverse intersection of Tourette Syndrome, culture, and identity with Michael Chichioco, a Filipino American medical student with a powerful story. In this episode, Michael opens up about his life with Tourette's, shedding light on the unique cultural challenges and the journey to understanding and acceptance. Tune in for an enlightening conversation that delves into the heart of living with Tourette's in a multicultural setting.
Episode Highlights:
[01:11] - Meet Michael Chichioco and discover the pivotal role of culture in his Tourette Syndrome journey.
[01:53] - Michael's personal battle with Tourette's – the early signs, diagnosis struggles, and cultural barriers.
[04:20] - A deep dive into childhood memories, understanding Tourette's, and family dynamics in different cultures.
[08:43] - Exploring the diverse reactions to Tourette Syndrome and the complexities within families.
[14:29] - The challenge of support and advocacy in varied communities and the significance of cultural awareness.
[17:35] - Discussing the urgent need for more diverse voices and perspectives in the Tourette community.
[23:41] - The power of representation: How diverse role models can reshape Tourette advocacy.
[28:07] - Uncovering the geographical and cultural diversity in the Tourette world – why understanding matters.
[30:14] - Michael's heartfelt advice for those living with Tourette Syndrome: Embrace and trust yourself.
Links & Resources:
● Tourette Association of America, Northern California & Hawaii Chapter: https://tourette.org/chapter/ca-no/
● New Jersey Center for Tourette Syndrome and Associated Disorders (NJCTS): https://njcts.org/
Remember, your story is powerful, and sharing your experiences can be the guiding light for someone else's journey. If you enjoyed this episode, please rate, follow, and share 'The Uptick' with others.
Previous Episode
Navigating Relationships with Tourette Syndrome
Join me as we unwrap the shared lives of Nicole and Ben Stark, both professionals navigating life with Tourette syndrome. In this heartfelt episode, we dive into the quirks and comforts of being in a relationship where both partners have Tourette. From amusing sugar packet fidgets to the support system they've built, get ready to be charmed and enlightened by their journey together.
Episode Highlights:
[00:36] - Welcome to 'The UpTic': Meet Nicole and Ben Stark, a couple defining what it means to live and love with Tourette.
[01:19] - The perks and trials of marriage when both partners have Tourette's.
[02:28] - The art of support: Ben and Nicole discuss how they help each other through the tough days.
[05:10] - Navigating the spectrum of co-occurring conditions and the importance of understanding each other's body language.
[07:51] - Managing work and vocal tics: the Stark's approach to focus and quiet spaces.
[08:46] - Entering the dating world with Tourette's: Ben and Nicole share their heartfelt advice on love and acceptance.
[10:34] - New parents to Anthony: the Starks talk about the joys and challenges of parenthood.
[16:24] Tourette's, self-esteem, and bullying.
[20:59] Tourette's, relationships, and self-discovery.
Links & Resources:
New Jersey Center for Tourette Syndrome and Associated Disorders (NJCTS): https://njcts.org/
Remember, your story is powerful, and sharing your experiences can be the guiding light for someone else's journey. If you enjoyed this episode, please rate, follow, and share 'The UpTic' with others.
Next Episode
Intersectional Identity
I had an enlightening discussion with Mason, a fellow advocate in the Tourette's community, about the complex intersectionality between TS and other identities. We explored the stigma surrounding coprolalia, the financial barriers to Tourette’s advocacy, and the dangers of gatekeeping Tourette’s diagnoses. Our conversation shed light on the diversity within the TS experience.
Episode Highlights:
[02:22] Kicking people with coprolalia out of the Tourette's community.
[04:16] The camp video that emphasized Tourette’s is not about swearing.
[06:12] Navigating intersectional identities beyond just having Tourette’s.
[07:39] The heavy financial burden of Tourette’s advocacy.
[10:08] Unpaid labor expected in disability advocacy communities.
[12:53] Respecting gender diversity at Tourette’s summer camps.
[14:31] The problem with accusing people of “faking” their tics.
[15:56] Tourette’s manifestations viewed differently across gender.
[17:53] Pretty privilege when it comes to tics being seen as “cute”.
[19:32] Who is really behind the Tourette’s police?
[21:01] Supporting conflicting access needs in the TS community.
[22:50] Barriers to medical transition for trans people with disabilities.
[25:00] Mason’s experience when coprolalia tics first emerged.
[31:32] The importance of visible TS role models across the spectrum.
Links & Resources:
New Jersey Center for Tourette Syndrome and Associated Disorders (NJCTS): https://njcts.org/
Remember, your story is powerful, and sharing your experiences can be the guiding light for someone else's journey. If you enjoyed this episode, please rate, follow, and share 'The Uptic' with others.
The UpTic - Diverse Voices of Tourette Syndrome
Transcript
I think we undersell how important representation is sometimes representation is really important. Just seeing someone that looks like you and has been through experience means a lot. It give me the same talk on how do you navigate school systems. But if that person is of color, it's different when you know who that you're already a minority from the standpoint of race, ethnicity, and men. Now you also know that you have this label of bei
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