E373 - 21st Century Disability & Living in a Hospital w/ Hollis

·1 hr 15 min·5 clips

Hollis Pierce explains how a CO2 buildup led to him waking up intubated and now living permanently in a hospital.

Host Andrew Gurza introduces the episode with ads and a content warning for explicit language. He shares personal updates about Halloween and Patreon supporters before introducing guest Hollis Pierce, host of the 21st Century Disability Podcast. Hollis and Andrew reminisce about attending Carleton University together and giving each other the 'wheelchair user nod.' Hollis explains his congenital muscular dystrophy diagnosis, which he has had since birth, and shares a childhood story where a school rejected him at age seven due to not wanting to pay for an educational assistant. He describes developing seizures and a critical incident three years ago where a CO2 buildup from low lung capacity led to him waking up intubated in the ICU, resulting in him now living permanently in a hospital with a ventilator. Hollis discusses adjusting to hospital life, joining committees, and negotiating freedoms like leaving with a nurse. The conversation explores the concept of 'severely disabled,' with Hollis agreeing it fits his experience. They talk about the exhausting daily reality where getting out of bed takes an hour and a half, and Hollis mentions having only three to five productive hours a day due to energy limits. Andrew asks about disability joy, and Hollis explains how disability fosters open-mindedness, compassion, and the ability to 'see through masks.' He shares his 'Bowtie Tuesday' tradition on social media, started in memory of his late friend Dino, who also had a severe disability. The discussion turns to disability grief, with Hollis expressing sadness over never being able to ski or safely swim in the ocean due to physical limitations. They briefly touch on sexuality, with Hollis noting he had a healthy sex life in university and that the hospital is supportive. The episode concludes with Hollis promoting his podcast, which focuses on the social model of disability, and they debate the need for a model that blends social and medical perspectives. Andrew thanks Hollis and encourages listeners to support the show.

As heard by us

A grounded look at severe disability, hospital life, and the practical work of preserving autonomy.

Disability After Dark frames autonomy through one guest's move from living independently into long-term hospital care. The episode finds its force in concrete moments: Briere allowing him to leave after non-liability agreements, a doctor arguing that he should be able to keep…

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You want to understand what autonomy can look like when long-term hospital care is part of daily life.

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