The Pulse

Chair of the Accessibility for Ontarians with Disabilities Act Alliance, David Lepofsky, joins host Grant Hardy to talk about the history of the AODA Alliance, and let’s us know what’s going on at their 30th Anniversary celebrations on November 25th in Toronto. 

The AODA Alliance has invited members from all major political parties to attend their event in Queen’s Park in Toronto, Ontario. Members of the disability community can visit www.aodaalliance.org to sign up for a 3 minute time slot to present a speech on accessibility barriers they’ve faced, and their lived experience with disability. The event will be held on November 25th between 2 and 4 p.m. eastern, and people can attend the event virtually or in person at Queen’s Park. 

Highlights:

• Show Intro (00:00)
• David’s role in the AODA Alliance (00:58)
• History of the AODA and the AODA Alliance (2:45)
• The AODA Alliance’s 30th Anniversary Celebration (16:13)
• David’s hope for the future of accessibility (23:35)

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About AMI

AMI is a not-for-profit media company that entertains, informs and empowers Canadians who are blind or partially sighted. Operating three broadcast services, AMI-tv and AMI-audio in English and AMI-télé in French, AMI’s vision is to establish and support a voice for Canadians with disabilities, representing their interests, concerns and values through inclusion, representation, accessible media, reflection, representation and portrayal.

Learn more at AMI.ca

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Grant Hardy hosts The Pulse, and speaks with Dilshad Kassam-Lallani, and Wesley Magee-Saxton from Holland Bloorview Kid’s Rehabilitation Hospital about the “Turning 18 isn’t so sweet: the critical gaps in health care for young adults with disabilities” report, part of their bigger advocacy campaign called “No Piece of Cake.” 

The report highlights the systemic change that is needed to support patients with disabilities through their transition from pediatric healthcare to the adult health care system. 

Dilshad Kassam-Lallani is a nurse practitioner in the Spina Bifida/Spinal Cord Injury Clinic at Holland Bloorview and sat on the advisory panel for the report. She speaks to Grant about the experiences with patients that helped her advise the reporters for this campaign, and what kind of impact this kind of report can have on the disability community. 

Then, Wesley Magee-Saxton joins Grant for a conversation about their lived experience aging out of the pediatric healthcare system. Wesley is 24 years old and has Cerebral Palsy. They were a patient of Holland Bloorview from 18 months old to 18 years old and describes their 18th birthday as “falling off a cliff.” 

You can read the full report at www.nopieceofcake.ca

Highlights:

• Show Intro (00:00)
• Introducing Dilshad Kassam-Lallani (1:30)
• Key findings from the report (3:39)
• Demographics and location’s impact on healthcare accessibility (6:30)
• Dilshad’s biggest takeaway from the report (8:01)
• Biggest risks that patients face coming out of pediatric care (10:48)
• What can we do to create change? (12:39)
• Introducing Wesley Magee-Saxton (15:47)
• What was the transition to adult health care like? (17:04)
• Ways to support patients coming out of pediatric care (18:01)
• The most shocking aspect of aging out of pediatric care (19:49) 
• What can be changed in the adult health care system? (20:43)
• Young adults deserve better during this transitional period (22:41)
• Wesley’s work at Holland Bloorview (25:46)
• Wesley’s dreams in Hollywood! (26:41)

Find us on Twitter: @AMIaudio #PulseAMI

To contact the Pulse: [email protected]

Check out our website: https://www.ami.ca/ThePulse

About AMI

AMI is a not-for-profit media company that entertains, informs and empowers Canadians who are blind or partially sighted. Operating three broadcast services, AMI-tv and AMI-audio in English and AMI-télé in French, AMI’s vision is to establish and support a voice for Canadians with disabilities, representing their interests, concerns and values through inclusion, representation, accessible media, reflection, representation and portrayal.

Learn more at AMI.ca

Connect on Twitter @AccessibleMedia

On Instagram @accessiblemediainc

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Joeita interviews Arthur Gwynne, operations manager at RAMPD, the Recording Artists and Music Professionals with Disabilities, about creating disability-inclusive spaces in the performing arts.

Highlights

• Disability Inclusion in the Performing Arts - Opening Remarks (00:00)
• Introducing Arthur Gwynne – Head of Operations at RAMPD (01:11)
• About RAMPD - Recording Artists and Music Professionals with Disabilities (01:38)
• The Origins of RAMPD (03:11)
• The RAMPD Community (07:48)
• Disability Advocacy in the Music Industry (12:25)
• Pushing the Boundaries of Art Itself (20:13)
• Closing Remarks (26:08)

RAMPD – 

Award-winning platform equipping the Music Industry with Disability inclusive solutions, programs, and a directory of peer-vetted music professionals and creators with disabilities, neurodivergence and chronic and mental health conditions.

Find RAMPD online - Facebook, Instagram

Arthur Gwynne Bio - from LinkedIn

Arthur heads operations for the award-winning platform RAMPD (Recording Artists and Music Professionals with Disabilities) where he’s collaborated with the likes of Netflix and the Recording Academy to build inclusive programming. Arthur also manages the career of globally touring recording artist, charting songwriter and cultural activist Lachi—the go-to voice on Disability Culture in the music industry through her work on the GRAMMYs Board and as CEO of RAMPD. Throughout the course of this mission-work, Arthur stepped away from a career in executive recruitment, and opened up publicly about his own neurodiversity. Today Arthur runs a robust diverse team, booking national tours, negotiating major contracts, working everything from creative projects and music releases to development programs from cradle-to-grave. 

Arthur speaks on panels and podcasts—at places like the Kennedy Center and the Music Managers Forum—on how embracing one’s neurodivergence is an asset in the music industry. He has also made it his mission to break down the silos and barriers holding back the disability community, laying seeds for a national conversation on Disability Culture and what Inclusion and Universal Accessible Design means at a practical and industrial level. Beyond all of this, Arthur is Lachi’s stylist, and designs her iconic Glam Canes.

Find us on Twitter: @AMIaudio #PulseAMI

To contact the Pulse: [email protected]

Check out our website: https://www.ami.ca/ThePulse

About AMI

AMI is a not-for-profit media company that entertains, informs and empowers Canadians who are blind or partially sighted. Operating three broadcast services, AMI-tv and AMI-audio in English and AMI-télé in French, AMI’s vision is to establish and support a voice for Canadians with disabilities, representing their interests, concerns and values through inclusion, representation, accessible media, reflection, representation and portrayal.

Learn more at AMI.ca

Connect on Twitter @AccessibleMedia

On Instagram @accessiblemediainc

On Facebook at @AccessibleMediaInc

On TikTok @accessiblemediainc

Joeita interviews Darryl Adams, Director of Accessibility at Intel, about his journey with accessible technology and his predictions about AI as a vehicle for disability inclusion. 

Highlights:

• Disability, Access & Technology - Opening Remarks (00:00)
• Darryl Adams, Director of Accessibility at Intel (01:13)
• Computer Architecture, Hardware & Accessibility (01:29)
• Darryl’s Journey with Intel and Access Tech (02:37)
• Embracing Technology in a Different Way (04:27)
• Challenges Pursuing Accessibility (06:17)
• Artificial Intelligence, Accessibility & Intel (09:11)
• Generative AI (12:28)
• Privacy Concerns Surrounding AI (13:36)
• Intel’s New Indoor Wayfinding Initiative (15:23)
• Wayfinding Tech Demo at Paris Olympics (17:30)
• Keeping Wayfinding Maps Up to Date (18:45)
• Darryl’s Vision for the Future of Access Tech (21:17)
• Closing Remarks (22:54)

It All Started in the Cafeteria

Darryl Adams’ mission to make a more accessible PC started with an epiphany in the Intel cafeteria in 2007. Adams was meeting his colleague, to discuss a new passion project: a device that would scan printed text and read it out loud for people with severe dyslexia, like his colleague, or visual impairment, like Adams.

Fast forward to today, Darryl Adams is the Director of the Intel Accessibility Office.

Darryl Adams Opinion piece:  “Intel’s Commitment to Building an Inclusive and Accessible World" 

Accessibility at Intel 

Follow Darryl Adams online: LinkedIn, X / Twitter 

Find us on Twitter: @AMIaudio #PulseAMI

To contact the Pulse: [email protected]

Check out our website: https://www.ami.ca/ThePulse

About AMI

AMI is a not-for-profit media company that entertains, informs and empowers Canadians who are blind or partially sighted. Operating three broadcast services, AMI-tv and AMI-audio in English and AMI-télé in French, AMI’s vision is to establish and support a voice for Canadians with disabilities, representing their interests, concerns and values through inclusion, representation, accessible media, reflection, representation and portrayal.

Learn more at AMI.ca

Connect on Twitter @AccessibleMedia

On Instagram @accessiblemediainc

On Facebook at @AccessibleMediaInc

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This week, Joeita interviews Kendall Soucie, director of the HEAL Lab at the University of Windsor, about Polycystic Ovary Syndrome (PCOS). 

Highlights

• Polycystic Ovary Syndrome Diagnosis (PCOS) - Opening Remarks (00:00)
• Introducing Kendall Soucie – Director of the HEAL Lab (01:05)
• What is PCOS? (3:00)
• What Causes PCOS? (5:21)
• Stigma Around Women’s Reproductive Health (06:25)
• PCOS Impacts Beyond Fertility (09:58)
• Long Term Use of Birth Control Pills (14:55)
• Alternative Treatments & Lifestyle Changes (16:48)
• Body Image, Femininity & PCOS (19:50)
• Disclosure & Supporting Someone with PCOS (24:25)
• Closing Remarks (30:40)

Guest Bio

Dr. Kendall Soucie is an assistant professor of psychology in the applied social psychology department at the University of Windsor. She's also the director of the HEAL Lab, which is the health experience and longevity lab.

Reference:

Health Experiences and Longevity Lab 

The Health Experiences and Longevity (HEAL) Lab is directed by Dr. Kendall Soucie in the Department of Psychology at the University of Windsor.

Her research interests lie at the intersection of Clinical Psychology and Health Psychology. She is interested in understanding the psychosocial and institutional determinants of chronic health conditions (e.g., diagnosis experiences, misdiagnoses/errors, illness disclosures, social support, and illness stigma) within women's health. Her focus is on PCOS, the most common, yet misdiagnosed endocrine syndrome in individuals assigned female at birth, but she is also interested in IBD, HS, POTS, and endometriosis, and their impact on quality of life. Dr. Soucie also explores how chronic health conditions impact a person's identity/life story, body image, and relationships with others, across the lifespan. She focuses on aspects of strength, resilience, and healing, and building community in her work, with her most recent set of studies exploring "thriving with PCOS across the lifespan". Her second area of interest lies in understanding how youth contribute to their communities during the transition to adulthood--with foci on youth generativity, prosocial engagement, and environmental justice. Dr. Soucie integrates quantitative (SEM, HLM) and qualitative (life narrative/autobiography, interviews, arts-based methods) approaches to better understand these domains of study.

Monash University PCOS Guideline - 

This International evidence-based guideline for the assessment and management of polycystic ovary syndrome (PCOS) is designed to provide clear information to assist shared decision-making and support optimal patient care and better health outcomes for the one in eight women affected by this condition.

It is the culmination of the engagement of over 3,000 health professionals and the work of 100+ multidisciplinary clinical and lived experience experts from six continents and 71 countries internationally.

Find us on Twitter: @AMIaudio #PulseAMI

To contact the Pulse: [email protected]

Check out our website: https://www.ami.ca/ThePulse

About AMI

AMI is a not-for-profit media company that entertains, informs and empowers Canadians who are blind or partially sighted. Operating three broadcast services, AMI-tv and AMI-audio in English and AMI-télé in French, AMI’s vision is to establish and support a voice for Canadians with disabilities, representing their interests, concerns and values through inclusion, representation, accessible media, reflection, representation and portrayal.

Learn more at AMI.ca

Connect on Twitter @AccessibleMedia

On Instagram @accessiblemediainc

On Facebook at @AccessibleMediaInc

On TikTok @accessiblemediainc

We discuss the new Ojibwe-dubbed version of Star Wars: A New Hope with Maeengan Linklater, Operations Director of the Dakota Ojibway Tribal Council, and Michael Kohn, Director of Distribution Operations for Lucasfilm. 

The interview discusses why projects like these are so important to the revitalization of Indigenous languages. 

Highlights:

• The Preservation of Indigenous Languages - Opening Remarks (00:00)
• Star Wars: A New Hope in Ojibwe – Trailer (01:24)
• Introducing Maeengan Linklater - Director of Operations of the Dakota Ojibwe Tribal Council (03:27)
• Origins of Star Wars Ojibwe Project (03:43)
• Process of Translating Star Wars into Ojibwe (08:25)
• Revitalization of Indigenous Languages (15:16)
• Introducing Michael Kohn - Director of Distribution Operations for Lucasfilm (18:11)
• Working on the Navajo Version of Star Wars (18:29)
• Differences Between Making the Navajo & Ojibwe Versions (19:47)
• Casting Ojibwe Star Wars (20:37)
• Impact of Navajo Version of Star Wars (22:02)
• Why Star Wars? (23:11)
• Parallels Between Indigenous Culture and Star Wars (24:24)
• Other Opportunities (25:14)
• Closing Remarks (26:40)

Reference:

APTN Announcement 

CBC Article - "This is going to be huge,' Manitoba actress says as premiere of Ojibwe-dubbed Star Wars film nears"

Dakota Ojibway Tribal Council 

Find us on Twitter: @AMIaudio #PulseAMI

To contact the Pulse: [email protected]

Check out our website: https://www.ami.ca/ThePulse

About AMI

AMI is a not-for-profit media company that entertains, informs and empowers Canadians who are blind or partially sighted. Operating three broadcast services, AMI-tv and AMI-audio in English and AMI-télé in French, AMI’s vision is to establish and support a voice for Canadians with disabilities, representing their interests, concerns and values through inclusion, representation, accessible media, reflection, representation and portrayal.

Learn more at AMI.ca

Connect on Twitter @AccessibleMedia

On Instagram @accessiblemediainc

On Facebook at @AccessibleMediaInc

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This week, Joeita speaks to Cameroon-based disability rights activist, journalist, and lecturer Kesah Princely Nfortoh about the impact of the country's civil war on People with Disabilities in Cameroon and the importance of involving People with Disabilities in the peace process. 

Highlights

• Disability, War & the Peace Process - Opening Remarks (00:00)
• Introducing Kesah Princely Nfortoh (01:10)
• The Anglophone Conflict in Cameroon (01:41)
• Impact of Conflict on Persons with Disabilities (03:57)
• Kidnapping of Blind University Student (05:59)
• Disability News Africa (08:30)
• Importance of Access to Technology (14:53)
• Supporting the Peace Process & Disability Inclusion (18:29)
• Involving People with Disabilities in the Peace Process (19:53)
• Closing Remarks (22:42)
• Show Close (23:38)

Links

Foundation for the Inclusion and Empowerment of Persons with Disabilities 

Disability News Africa 

Find Kesah Princely Nfortoh online: LinkedIn, X

Find us on Twitter: @AMIaudio #PulseAMI

To contact the Pulse: [email protected]

Check out our website: https://www.ami.ca/ThePulse

About AMI

AMI is a not-for-profit media company that entertains, informs and empowers Canadians who are blind or partially sighted. Operating three broadcast services, AMI-tv and AMI-audio in English and AMI-télé in French, AMI’s vision is to establish and support a voice for Canadians with disabilities, representing their interests, concerns and values through inclusion, representation, accessible media, reflection, representation and portrayal.

Learn more at AMI.ca

Connect on Twitter @AccessibleMedia

On Instagram @accessiblemediainc

On Facebook at @AccessibleMediaInc

On TikTok @accessiblemediainc

This week, Joeita speaks to Ely Tee, founder of "Gimping", a Facebook group about camping and outdoor activities for People with Disabilities.

Highlights

• Making the Outdoors Accessible - Opening Remarks (00:00)
• Introducing Ely T & “Gimping” (01:04)
• Starting the “Gimping” Facebook Group for Adaptive Camping & Outdoorsing for People with Disabilities (02:32)
• Accessible Camping Tips & Tricks (03:16)
• Ely the Adventurer (05:11)
• The Call of the Wild (06:34)
• Accessible Campsites & Provincial Parks (09:14)
• Accessibility Improvements (10:59)
• Financial Barriers to Accessing the Outdoors (11:37)
• Planning for an Outdoors Excursion (13:07)
• Camping with Others (16:20)
• Unforeseen Situations & Camping Emergencies (17:51)
• Essential Items for Backcountry Exploration (20:29)
• Getting Started (22:50)
• Show Close (24:48)

"Gimping" Facebook Group

Find us on Twitter: @AMIaudio #PulseAMI

To contact the Pulse: [email protected]

Check out our website: https://www.ami.ca/ThePulse

About AMI

AMI is a not-for-profit media company that entertains, informs and empowers Canadians who are blind or partially sighted. Operating three broadcast services, AMI-tv and AMI-audio in English and AMI-télé in French, AMI’s vision is to establish and support a voice for Canadians with disabilities, representing their interests, concerns and values through inclusion, representation, accessible media, reflection, representation and portrayal.

Learn more at AMI.ca

Connect on Twitter @AccessibleMedia

On Instagram @accessiblemediainc

On Facebook at @AccessibleMediaInc

On TikTok @accessiblemediainc

This week Joeita speaks to blind YouTuber Sam Seavey, creator of the Blind Life YouTube channel.

Highlights

• Blindness & Technology - Opening Remarks (00:00)
• Introducing Sam Seavey – YouTuber & Host of the Blind Life (01:13)
• Growing the Channel & Standing Out from the Crowd (03:06)
• Knowing Your Audience (04:51)
• Latest Tech Developments for the Blind (05:56)
• Applications of AI (08:18)
• Ethics of Adopting AI in the Blind and Low Vision Community (10:24)
• Virtual Reality, Augmented Reality & the Visually Impaired (12:00)
• Patriot Viewpoint Edge Enhancement (14:40)
• DIY Tech Solutions (15:47)
• Addressing the Digital Divide (17:05)
• Financial Barriers to Accessing Assistive Devices (18:51)
• TechnoAbleism & “Fixing Disability” (21:04)
• Blind & Low Vision Innovators in the Tech Field (24:06)
• Exciting Accessible Tech on the Horizon (25:11)
• Show Close (26:09)

About Sam Seavey

Sam was diagnosed at age 11 with Stargardt’s, an early onset form of macular degeneration, and was legally blind by his mid-teens. Over the last 30 years, he has developed an extensive background in research and understanding of assistive devices and techniques of living with low vision.

Sam is the founder and creator of The Blind Life YouTube Channel, which, according to a recent article from the Foundation Fighting Blindness, “is currently the largest resource for assistive technology on the internet.” With more than 50,000 subscribers and over 700 informative videos, Sam helps people world-wide living with vision loss, offering tips for managing daily tasks, reviewing assistive devices, and hosting informative interviews with key stakeholders in the visually impaired community. 

Sam is recognized as an expert when speaking and presenting at national conferences. Featured in USA TODAY, WIRED

Magazine, and numerous national and international podcasts on assistive technology, he collaborates with tech giants like Google, SONY and Amazon, has created content for numerous websites and participates on Microsoft’s Window’s Accessibility Advisory Board. 

Sam currently manages the A-T program at a nonprofit where he provides training on assistive devices ranging from low tech items like simple bump dots and magnifiers, to phone apps and assistive computer software. Whether he’s working one on one with clients or through his YouTube videos, Sam’s goal is to help everyone live their BEST BLIND LIFES!

Links: 

The Blind Life Website, YouTube & Podcast 

Find us on Twitter: @AMIaudio #PulseAMI

To contact the Pulse: [email protected]

Check out our website: https://www.ami.ca/ThePulse

About AMI

AMI is a not-for-profit media company that entertains, informs and empowers Canadians who are blind or partially sighted. Operating three broadcast services, AMI-tv and AMI-audio in English and AMI-télé in French, AMI’s vision is to establish and support a voice for Canadians with disabilities, representing their interests, concerns and values through inclusion, representation, accessible media, reflection, representation and portrayal.

Learn more at AMI.ca

Connect on Twitter @AccessibleMedia

On Instagram @accessiblemediainc

On Facebook at @AccessibleMediaInc

On TikTok @accessiblemediainc

We preview the Desiring Autism and Neurodivergence Symposium with Patty Douglas,Associate Professor of Disability Studies & Chair of Student Success and Wellness at Queen's University & Metis Beadworker & Visual Artist Claire Johnston.

Highlights:

• Autism & Neurodiversity in Educational Settings - Opening Remarks (00:00)
• Introducing Patricia Douglas - Associate Professor of Disability Studies & Chair of Student Success and Wellness at Queens University (01:31)
• Desiring Autism and Neurodivergence Symposium (02:32)
• Desiring Versus Inclusion or Acceptance (04:02)
• Conference Themes & Agenda (06:50)
• Including Artists in Academic Discussions (9:28)
• Target Audience for Symposium (12:20)
• Registering for the Symposium (15:03)
• Introducing Claire Johnston - Metis Beadworker & Visual Artist (16:25)
• Storytelling & Bead Making Workshop (16:56)
• Indigenous Perspective Around Autism & Neurodiversity (18:56)
• Metis Bead Work (23:51)
• Show Close (26:54)

Guest Bio’s

Patty Douglas 

Patty Douglas (she/they) is a former special education teacher in Ontario and British Columbia and an Associate Professor of Disability Studies in the Faculty of Education at Queen’s University. She is a Senior Research Affiliate at the Re•Vision Centre for Art and Social Justice at the University of Guelph. 

Her research focuses on rethinking deficit approaches to disability at the intersection of difference in education using critical and creative approaches including disability studies, critical autism studies, mad (m)othering, decolonial studies and arts-based and creative methodologies. 

Douglas founded and currently leads the Re•Storying Autism in Education project (SSHRC Insight Grant www.restoryingautism.com), a multimedia storytelling project in Canada, the UK and Aotearoa (New Zealand) that collaboratively reimagines autism and practice in education and health in ways that centre historically excluded perspectives and affirm and desire difference. 

As a white settler academic, Douglas is deeply committed to decolonizing research. She identifies as neurodivergent and invisibly disabled. 

Her monograph, Unmothering Autism: Ethical Disruptions and Affirming Care is in production with UBC Press.

Douglas offers talks, consulting, and professional development for school divisions, educators and practitioners interested in neurodiversity affirming approaches.

Re•Storying Autism in Education  

Re•Storying Autism in Education is a multimedia storytelling project that brings together Autistic people, family members, practitioners, educators and artists to rethink practice in ways that desire the difference of Autism.

Claire Johnston 

Claire Johnston(she/they) is a Métis beadworker based in her Homeland of Winnipeg, MB. 

Claire's beadwork practice is informed by the strengthening of relationships -- with herself, her kin and the natural world. 

As an Autistic beadworker, her love of bright colours and attention to detail allow for vibrant and intricate pieces. Claire believes strongly in "cripping" the arts and expanding accessibility for Disabled and low-income Indigenous artists to thrive. 

Her work has been exhibited at both the Bill Reid Gallery of Northwest Coast Art in Vancouver, BC and Tangled Arts in Toronto, ON.

She is a steering committee member for the Critical Autism Summit that will take place in Manitoba in 2024, where she will host beading circles to facilitate discussions on decolonizing understandings of Autism and neurodiversity.

Find more of Claire’s work online: https://www.clairejohnston.net/

Find us on Twitter: @AMIaudio #PulseAMI

To contact the Pulse: [email protected]

Check out our website: https://www.ami.ca/ThePulse

About AMI

AMI is a not-for-profit media company that entertains, informs and empowers Canadians who are blind or partially sighted. Operating three broadcast services, AMI-tv and AMI-audio in English and AMI-télé in French, AMI’s vision is to establish and support a voice for Canadians with disabilities, representing their interests, concerns and values through inclusion, representation, accessible media, reflection, representation and portrayal.

Learn more at AMI.ca

Connect on Twitter @AccessibleMedia

On Instagram @accessiblemediainc

On Facebook at @AccessibleMediaInc

On TikTok @accessiblemediainc