Episode 43: Communication First

The podcast introductory segment is composed to evoke friction. It begins with the sound of an elevator crunching as it goes up. A robotic voice says “floor two.” Then music with a mysterious tone comes on. A series of voices define Contra. Layered voices say:

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Contra is friction… Contra is texture… Contra is questions…Nuanced…Collaborative…Contra* is world-changing…Contra is innovation, messy, solidarity, interdependence…Contra is thinking about design critically. Contra is a podcast.

 

Throughout, there are sounds of typing, texting and Zoom being opened. 

Then an electric guitar bass note fades into the sound of a digital call ringing and starting. The intro ends with the sound of a Facetime call ringing and then picked up.

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Hi, I’m Kelsie Acton, the project manager for the Remote Access Archive. The Remote Access Archive contains oral histories, But it also contains numerous documents. I’ll be doing a series of mini-episodes sharing some of them with you. In this episode I want to highlight five documents sent to us by Communication First. Communication First is an advocacy group that works to advance the rights of people who cannot rely on speech. These five documents are press releases and articles from 2020 and 2021, early in the pandemic. They document Communication First’s work to ensure that disabled people had access to in person support, particularly in hospitals and in education. 

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Not everyone is served by remote access. Or they might need in person support to partake in remote access. In one of the longer articles, Communication First details their findings from a survey of families of students with communication disabilities. The article shares how many students need help to access online sessions. But families are often denied support in their homes. So, in order to access the support they need, the students were forced to go to schools, exposing them to COVID. One parent said, “My daughter is not getting what she needs, and it doesn't feel like there is a viable option as long as the virus is a risk. She is medically fragile and we can't expose her.” Many people with communication disabilities have developmental and intellectual disabilities, meaning social distancing and masking may not be options for them. As Communication First says, “Requiring students who are already at heightened risk of dying from COVID — and who cannot take safety precautions against

transmission — to risk their lives just to receive those in-person supports is no choice

at all.”

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In another document, a press release, Communication First shares how they are working with a number of disability organizations to challenge the no-visitor rule in hospitals. 

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Here’s a little bit of a press releases about an letter written to Virginia Governor Ralph Northam to ensure access to in person support in hospitals during the early stages of the pandemic:

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In response to the COVID-19 pandemic, many hospitals in Virginia and elsewhere adopted no-visitor policies to prevent transmission of the coronavirus. In most cases, however, these policies make exceptions and permit support people for some types of patients, including children and women in delivery and labour, but prevent similar access for patients with disabilities who may require in-person supports to help them communicate with healthcare providers, remain calm, and reduce the need for physical and chemical restraints. In order to receive equitable access to health care, patients with disabilities are entitled to the reasonable support necessary to be able to effectively communicate their symptoms and discomforts, ask questions, and provide informed consent for treatment.

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In one example described in the letter, a 29-year-old man with autism experienced significant negative health outcomes when he was denied his right to support. Without his disability support personnel, he was unable to communicate effectively with medical personnel, unable to use the call bell when he needed medical attention, and when nurses and doctors were present, he was unable to communicate changes in symptoms, pain, discomfort, and other needs, all resulting in a threat to his recovery.

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In the episode with Hector Ramirez, hector shares their memories of advocating for disabled people in the early years of the pandemic. These documents from Communication First reveal more of the urgent advocacy work that was happening at that time.

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Thank you for listening. If this document touched you somehow - sparked your curiosity, made you angry, made you feel seen - you can find it in the Remote Access Archive at www.criticaldesignlab.com/project/remote-access-archive. Remember, remote access is disability culture.

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[Rhythmic pops. Strings ripple and play as Aimi speaks]

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Aimi Hamraie: 

You've been listening to Contra*, a podcast about disability design, justice, and the life world. Contra* is a production of the Critical Design Lab. This season's episodes draw on our recent project, the Remote Access Archive, created by a team of disabled researchers collaborating remotely. Learn about our projects, including the remote access archive at www.criticaldesignlab.com. 

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If you enjoyed this episode, please subscribe on Spotify, rate and leave a review. 

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This season of Contrais * is edited by Ilana Nevins. Kelsie Acton and Aimi Hamraie developed the episodes. 

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The Contra* Podcast is licensed under a Creative Commons attribution, non-commercial share, like International 3.0 license.That means you can remix, repost, or recycle any of the content as long as you cite the original source, aren't making money, you don't change the credits and you share it under the same license.

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[music fades out]