A new study by sociology professor Rena Zito examines how adults with Tourette Syndrome grapple with disability identity.
Is Tourette Syndrome a disability? For people living with the condition, the answer is often more complicated than a simple yes or no.
In a new study published in Disability & Society, sociology professor Rena Zito examines how adults with Tourette Syndrome (TS) understand their condition in relation to disability. Drawing on in-depth interviews with 30 adults with TS, Zito found three broad perspectives. Some participants rejected the disability label, some embraced it and others occupied an uneasy middle ground.
Although participants commonly described pain, injury, disruption to everyday activities, stigma, and discrimination, these experiences did not necessarily determine whether they considered themselves disabled. In fact, tic severity did not neatly correspond with disability identity. Instead, participants’ views reflected broader cultural ideas about what a “real” disability is supposed to look like, including assumptions that disability must be visible, permanent, and severely limit independence.
For some, those assumptions made the disability label feel inappropriate. One participant explained, “I don’t need a ramp, I’m fine,” while another said Tourette Syndrome “can be disabling at times” but is not a “capital D disability.” Others embraced disability as an identity that recognizes both the physical effects of tics and the social barriers people with TS encounter.
Zito’s findings highlight disability identity as a social and interpretive process instead of as a straightforward consequence of diagnosis or impairment. They also suggest that clinical conversations and disability determinations should focus on how TS affects a person’s daily life rather than how visible or dramatic their tics appear to others.
This research was supported by an Elon University Summer Research Fellowship.
Citation:
Zito, R. (2026). ‘It can be disabling but it’s not a capital D disability’: Disability (dis)identification in Tourette Syndrome. Disability & Society, 1-24. https://doi.org/10.1080/09687599.2026.2729345