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/

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