The Spinal Muscular Atrophy Podcast with Kevin Schaefer · SMA News Today

#152: Kamil Goungor, Disability activist

·45 min·2 clips

Camille rejects being called a “patient” and says he wants support, dignity, and choice in the community.

1. The Spinal Muscular Atrophy Podcast with Kevin Schaefer features Kamil Goungor, a disability activist in Athens, Greece, discussing SMA Type 2 and independent living. 2. Kevin Schaefer hosts the episode, identifies himself as having SMA Type 2, and introduces Kamil Goungor as a 37-year-old who works for the European Network on Independent Living. 3. The episode asks how Kamil moved from a childhood in special schools and a large SMA family into disability activism, travel blogging, and European advocacy. 4. Kamil says he was born in Greece, grew up in Athens, and was one of five children in a family where three siblings had SMA. 5. He describes special day school and special high school as the practical option in Greece because mainstream schools were inaccessible and his mother had to work. 6. Kamil says he studied journalism and communication at university and did not want his career to be limited to disability coverage. 7. He says people expected him to write about disability, but he wanted to cover sports, travel, culture, football, and basketball instead. 8. Kamil says a disabled Greek activist, Stelios Kribouropoulos, invited him to Strasbourg, France, for a conference on independent living. 9. He says the Strasbourg trip exposed him to ideas like choice and control, self-determination, personal assistance, deinstitutionalization, and living in the community. 10. Kamil says six of the 11 travelers returned and created the Greek independent living organization, iLiving, on a voluntary basis. 11. He says the group later helped shape personal assistance legislation in Greece and joined the government’s stakeholder process. 12. Kamil says Greece now has a pilot project with more than 2,000 disabled people receiving personal assistance hours, even though he calls the system messy. 13. He says he later spent six months in Belgium volunteering for the European Network on Independent Living through Erasmus. 14. Kamil names Ed Roberts, Berkeley, and Judy Heumann as part of the independent living history he learned in Europe and the United States. 15. He says Brussels gave him direct exposure to the European Commission and European Parliament, where disability organizations try to influence policy. 16. Kamil says he is not interested in being called a “patient,” does not want to be treated as sick or contagious, and wants support for a good life with dignity. 17. He says he almost died two years ago and started physiotherapy only a few months ago after not doing it for 20 years. 18. The interview stays conversational and personal, with Kevin asking follow-up questions about family, sibling dynamics, daily routines, and advocacy work. 19. People interested in SMA advocacy, independent living, and European disability policy will likely want this episode. 20. Listeners looking for medical updates or a tightly structured research discussion may skip it.

As heard by us

A patient conversation about travel, independence, and refusing to reduce disability to diagnosis.

Camille Gongor's conversation with Kevin Schaefer stays rooted in lived experience: travel, work with the European Network on Independent Living, co-founding iLiving, and the small decisions that make access possible.

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Why you'd press play

If you want a lived disability perspective with practical travel detail, start here.

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