Connecting Disability

We are ending the summer in style as we welcome Steven Verdile onto the show today. Steven is a New York City-based designer and writer, but he’s probably best known as the creator of the disability satire website The Squeaky Wheel. We talk about his approach to disability satire and humour, the funniest disability moments we’ve encountered recently, the Barbie movie and more. Here are the links to the Squeaky Wheel articles we discussed: Wheelchair Barbie Gets Revolutionary 4 Seconds of Fame: https://thesqueakywheel.org/2023/08/02/wheelchair-barbie-gets-revolutionary-4-seconds-of-fame/ Disability Pride May Have Ended, but 11 Months of Disability Shame Are Just Getting Started: https://thesqueakywheel.org/2023/08/01/disability-pride-month-may-have-ended-but-11-months-of-disability-shame-are-just-getting-started/ U.K.’s Largest Benefit Recipient Awarded with Shiny New Hat: https://thesqueakywheel.org/2023/05/06/uks-largest-benefit-recipient-awarded-with-shiny-new-hat/ Visit The Squeaky Wheel at: www.thesqueakywheel.org or Steven Verdile’s website at: www.stevenverdile.com On a sadder note, this episode marks the final episode of the Connecting Disability podcast. Recent changes at AMI-audio have meant several shows, like this one, are ending. I want to thank all the guests who joined me during the past two years, the technical producers who worked on this show, and Andy Frank and Ryan Delehanty for guiding the podcasts. And most importantly, thank you to you, the listeners, for joining me on this journey. I loved every minute we spent together. I’m sad to be leaving this show. If you want to contact me, you can go to the site formerly known at Twitter @meagangillmore. My messages are open. Or, send a note to feedback@ami.ca, tell them you’d like to get in touch with me, and they’ll pass your message along. I hope we connect again soon!

There’s been a lot more talk lately (in Canada, at least) about the disability community as a political unit. But what happens if your disabilities aren’t considered to be disabilities? Laura Brydges has spent years learning and teaching others about the needs of those with hidden disabilities. She joins us to talk about her journey with hidden disabilities, what politics can and cannot do for people with disabilities, and to share some poetry. Laura has a lot of wisdom to share about choosing happiness and living a full life with limitations. I really hope you enjoy spending time with her as much as I did. A quick editing note: During this conversation, Laura and I talk about a draft accessibility standard from Accessibility Standards Canada that is open for public consultation. That specific standard is the outdoor spaces standard. You can find more information about that standard here: https://accessible.canada.ca/. The deadline for public feedback is August 11. Learn more about Laura’s work and the resources she’s developed here: https://hdscanada.wordpress.com/

There are so many things to say about this month’s guest. Jess Tuomela is a four-time Paralympian who has worked as a massage therapist and now as a dog trainer, training dogs in scent discriminate trailing. But while she’s made headlines for her athletic career and dog training, my favourite thing about Jess is the time I got to spend with her several years ago. There’s a lot of laughter in this episode. We hope you enjoy it as much as we did – and Jess, I really hope we get to meet in-person again soon! Learn more about True North Canine, Jess’s dog training company, here: https://truenorthk9dogs.com/ More on Jess and Lucy’s work locating an elderly woman: https://www.vancouverislandfreedaily.com/news/saanich-paralympian-finds-missing-person-with-the-help-of-her-dog/ Jess also works as a mental performance strategist: https://www.jessicatuomela.com/ Jess was featured on an episode of the CBC podcast, Player’s Own Voice. Catch that here: https://www.cbc.ca/listen/cbc-podcasts/202-players-own-voice/episode/15796615-jessica-tuomela-paratriathlete-trains-through-the-trials We talk about the CNIB Lake Joseph Centre a lot on this podcast. You can learn more about the camp here: https://www.cnib.ca/en/programs-and-services/play/cnib-lake-joe?region=on

What do New York Senator campaigns, sociology and the late Christopher Reeve (a.k.a. Superman) all have in common? Our guest: Brooke Ellison. Brooke is an associate professor at Stony Brook University in Stony Brook, New York. She’s also the author of two books: Miracles Happen and her most recent, Look Both Ways. She joined the show to talk about the process of writing this book, the biggest thing she would change about how she’s lived with a disability, and her thoughts about disability’s place in politics. You can learn more about Brooke and her work at her website: www.brookeellison.com Follow her on Twitter: @brookemellison

Ben Mattlin is one of my favourite writers to read about disability, disability policy and life with disability. His latest book, Disability Pride, describes how the Americans with Disabilities Act (ADA) has changed disability advocacy in the United States and provides snapshots of what disability advocacy and culture looks like today. I was so humbled and grateful when he agreed to be on our show and I hope you enjoy this conversation. Learn more about Ben at www.benmattlin.com Ben references some different pieces of American legislation. You can read more about the history of the Individuals with Disabilities Education Act here: https://sites.ed.gov/idea/IDEA-History. The lawsuit Ben refers to where a Florida woman is suing a Maine resort over its lack of ADA compliance is called the Acheson Hotels, LLC, v. Deborah Laufer. Read the New York Times reporting on it here: https://www.nytimes.com/2023/03/27/us/supreme-court-maine-disability.html.

Friends, we have a treat of an episode for you this month! The sibling relationship can be the longest and most complicated relationship in someone’s life. Today, we’re chatting about how disability and chronic illness influence siblings. Our guests are sisters Holly and Amy Mathers. Holly is a registered psychotherapist and Amy is a passionate advocate of Canadian teen fiction. They joined me to talk about how Amy’s disability has impacted them throughout their lives and what it took to go from being siblings to friends. (And, yes, since Holly is a psychotherapist, this did feel like therapy sometimes! All the feelings!) You can listen to Amy’s podcast about Canadian teen authors, YA Write, on major podcast platforms. Find more info here: https://bookcentre.ca/publications/ya-write Learn more about Holly’s work here: https://www.hopeforfamilies.net/ Siblings Canada provided crucial support for this episode. Learn more about them here: https://canadiancaregiving.org/siblingscanadea/

"This month, we are celebrating love and remembering Black History Month with Clovis and Sherron Grant. Clovis and Sherron are the co-founders of Sawubona Africentric Circle of Support, an organization dedicated to helping Black families get the resources they need to support loved ones who live with a disability. Clovis and Sherron have a lot of insight about family life and responding to difficult social expectations. I really hope you learn as much from them as I did. You can find their work here: https://www.sawubonaacs.org/ Follow them on Twitter: @sawubonaacs Read more about how this work started here: https://www.thestar.com/life/parent/2020/12/06/sherron-grant-got-used-to-being-the-only-black-mother-in-support-groups-for-parents-of-autistic-kids-shes-making-sure-other-black-parents-dont-feel-as-lonely-as-she-did.html Read more of Clovis’sreflections on fatherhood in the Spring 2022 issue of Autism Matters: https://files.elfsightcdn.com/43cd4e5b-d7d4-4fe6-8e3c-9968aa47e130/db9bbc51-a266-4cff-9ab7-8448da7ac0ae/AM---Spring-2022---FINAL.pdf "

Welcome to 2023! We often start a new year with lofty clichés about reaching for the moon or shooting for the stars. But what if that became a reality? Today, we are talking to Denna Lambert. Denna is the Space Technology Mission Directorate’s Early Stage Innovations & Partnerships Diversity, Equity, Inclusion and Accessibility lead at NASA. She works with space technology and in December, she got to experience zero-gravity herself when she participated in a flight with AstroAccess. She joins us to talk about how she got to NASA, her hopes for disability inclusion in space travel and what it’s like being a blind Black woman working in STEM. I loved meeting Denna, and I hope you do too! Learn more about AstroAccess here: https://astroaccess.org/

In time for the holidays, we’re discussing what it means to find a home. This November, Vicky Levack of Halifax finally left the long-term care facility where she had lived since she was 21. She joined Meagan to talk about what it’s like adjusting to life in the community after being institutionalized, why her advocacy isn’t finished, and her pet peeve with princess movies. Thank you so much to everyone who joined us and listened in 2022! We will be back in 2023! Follow Vicky on Twitter @VickyLevack Learn more about the Disability Rights Coalition of Nova Scotia at: https://www.disabilityrightscoalitionns.ca/ Read some reporting Meagan did last year about Vicky’s situation here: https://broadview.org/young-people-with-disabilities-long-term-care/

This month, we’re talking about the news; particularly what stories about disability make the news and what it can be like to report on them. We’re joined by Spencer van Vloten, from BCDisability.com, to talk about how he got involved in covering disability policy, the impact of the COVID-19 pandemic on awareness of disability issues and why the disability movement needs to involve people without disabilities. Stick around to the end – we try to make the case that Reese’s Peanut Butter Cups can teach us about advocacy. Also, we do talk about medical assistance in dying (MAID) briefly. If you or someone you know is experiencing thoughts of suicide, call Talk Suicide Canada at 1.833.456.4566. You can learn more about Spencer’s work at: www.bcdisability.com Follow Spencer on Twitter @BcDisability

Water scares many people. Our guest, Mike Shoreman, has conquered this fear. Many people know him as the Unbalanced Paddleboarder. In August, Mike became the first person with disabilities to paddle board across all of the Great Lakes. In this conversation, he talks about why he decided to do this, how crossing the Great Lakes resembles a mental health journey and the pros and cons of being called “inspirational.” He also tries to counsel Meagan through aquatic anxiety. Follow Mike on Twitter @MikeShoreman Follow Mike on Instagram @mike_shoreman Learn about his book here: https://www.goodreads.com/en/book/show/55240816-diaries-of-the-unbalanced-paddleboarder Read the CBC article Meagan mentioned: https://www.cbc.ca/2017/what-moving-to-whitehorse-and-back-taught-me-about-my-disability-and-canada-1.4149676

On this first episode of Season 2, I am thrilled to introduce you to Heather Graham. After Heather was diagnosed with multiple sclerosis at age 46, she lost much of her mobility and active lifestyle. A few years ago, she decided to gain it back. Heather joins me from her residence in Calgary to talk about her journey with MS, what living in long-term care looks like before and during a pandemic, and what it means to control your disability. Some resources Heather mentioned in this episode: Direct MS: www.direct-ms.org Wahls Diet: https://terrywahls.com/ Overcoming MS: https://overcomingms.org These links are provided for your personal research. They do not constitute endorsements or medical advice. Meagan’s previous reporting on younger adults living in long-term care: https://broadview.org/young-people-with-disabilities-long-term-care/

We’re ending our FIRST YEAR of podcasting on a musical note! W. Ian Walker has spent his life in music, whether by singing with various musical groups, working in arts administration, or now as a playwright. Ian joins Meagan to talk about turning his memoir, Stirring My Soul to Sing, into a play, how music has influenced his journey with ADHD, his experiences in the church, and the value of mentorship. Meagan reveals her answers to the questions, “Where is it hard for you to connect with your disability?” and, “What has good connection looked like for you?” We also hear about what happens when boy band fans enter middle age. Learn more about Ian’s book Stirring My Soul to Sing: https://www.amazon.ca/Stirring-My-Soul-Sing-Overcoming-ebook/dp/B07H4WYH4X Attention Deficit Disorder Association – http://add.org Thank you to everyone who has listened and given feedback. You are very appreciated.

It’s hard to believe, but summer vacation is nearly half over. So, today we’re talking about the importance of getting outside. Leona Mattice is an avid birder from Elliot Lake, Ont., who has spent years encouraging those with disabilities to explore the natural world around them. She joins us today to talk about how birding helped her through grief, brought her love and what birds can teach us about life with a disability. We also test her knowledge of bird calls.

It’s graduation season, so we turn our focus to employment and job searching. Our guest is Jack McCormick, human resources manager at Microsoft. Jack chats about how his partial sight has impacted his job search and career, and why volunteering is so important. And – congrats to the Class of 2022!

People with disabilities often use the medical system, but what happens when they want to become doctors? On this episode, Quinten Clarke gives us some insight into what the medical profession looks like as a medical resident who has a disability. Quinten is the vice-president and Trainee Group Lead for the Canadian Association of Physicians with Disabilities. Through this work, he advocates for medical learners with disabilities. He’s currently a resident physician at the University of British Columbia. He talked about how he thinks the medical system views disability, and how this can be changed.   You can learn more about the Canadian Association of Physicians with Disabilities hereCheck out the Ostomy Canada Society hereQuinten mentions a February 2021 article by Dr. Lisa I. Iezzoni. Read more about that article here: The full article can be accessed here: 

It’s been nearly two months since Russia invaded Ukraine. The ongoing war has had devastating impacts on the approximately 2.7 million Ukrainians who have disabilities. Tanya Herasymova knows this well. She’s the project manager of Fight for Right, an organization that advocates for human rights for Ukrainians with disabilities. Tanya joins us to talk about how the war has impacted her life, what it’s like being a refugee with a disability and what her biggest hopes are. This is a very raw and honest conversation, and I’m so grateful that Tanya took the time to join us. You can learn more about Fight for Right’s work here: https://ffr.org.ua/

The Beijing Paralympics and Olympics have just wrapped up, and we’re taking this opportunity to reflect on disability and sport. In this case, though, we’re looking at how disability connects with professional, able-bodied sports. Chanel Keenan is the intersectionality consultant for the NHL’s Seattle Kraken, which means she’s responsible for making sure the NHL’s newest team considers the needs of fans who are disabled. Chanel and Meagan talk about how Chanel got her start in hockey, why professional sports organizations need to consider disability, and why Chanel thinks her disability would make her a good TV detective. This is a really fun conversation, and we hope it gives you the opportunity to think, laugh and enjoy being a fan. You can find all the ways to connect with Chanel here: https://linktr.ee/CMoreThanSports Learn more about one of Chanel’s hockey heroes, the late Joey Moss, here: https://www.joeymossmemorialfund.ca/

This conversation is a vivid example of all the ways disability can bring unexpected opportunities and experiences to our lives. David Achuroa, who is from northern Ghana, contracted polio when he was two. That eventually led him to a rehabilitation centre, which then led to him beginning school. David earned a science degree in community nutrition before moving to Canada to study anthropology at the University of Calgary. He currently lives in Edmonton. In this conversation, we talk about different cultural understandings of disability, and how being asked, “What happened to you?” can be a good thing. And, as we approach two years of the COVID-19 pandemic, we reflect on disability accessibility and handwashing. David really challenged the way I think about interactions with strangers, and I hope you learn something form this conversation, too. David Akanpentiba Achuroa, a disability advocate, nutritionist, social anthropologist, and policy analyst, undertakes research that increases our knowledge in social and cultural issues that impact the lives and well-being of people with disabilities. Projects he currently works on empowers people with disabilities in Africa, the UK and Canada. He sits on the management committee of Disability in Wales and Africa in the UK and volunteers with Alberta Disability Pride Foundation and Edmonton Region Immigrant Employment Council. His graduate thesis explored the web of cultural practices and systems that influence parental understanding and caring of children with disabilities among the Bulsa in Northern Ghana.

Welcome to 2022! We’re starting this year with a story of living with hope and resilience in the face of ongoing health challenges. Clare Li has lived with various autoimmune diseases for most of her life. But it wasn’t until the Vancouver native moved to Montreal that she intently started studying her disabilities – and shortly after she made some hard decisions to increase her independence, she was diagnosed with breast cancer. In this conversation, Clare talks about her journey of accepting what happens when an invisible disability becomes visible, and what her cancer diagnosis hasn’t changed. I hope this episode encourages you, whether you’re living with a long-term illness, or know someone who is. Resources Clare finds helpful: Wildfire Breast Cancer Magazine – for women “too young” for breast cancer: www.wildfirecommunity.org Rethink Breast Cancer: https://rethinkbreastcancer.com Personalink – helping connect breast cancer survivors who’ve had mastectomies with tattoo artists: https://www.instagram.com/personal.ink/?utm_medium=copy_link Clare would like to thank UNI Training Montreal for their help and support: https://unitraining.ca/ For various reasons, Meagan often looks for good writing about living with cancer. She is especially grateful for Kate Bowler's work on this topic. You can check out Kate's work at: https://katebowler.com