IDD: Get to know me

What if disability representation started in the toy box? In this week’s episode, podcast hosts Daniel and Victor sit down with Lockwood Toys founder, Amy Lockwood, whose main mission is to spread inclusivity and cheer to children, one toy at a time. She talks about the motivation behind the company’s founding, the inspiration behind many of the toys (spoiler: a lot of them are inspired by her son!), and the challenges and triumphs in her journey to increase disability representation.

In this week's episode of the IDD: Get to Know Me podcast, hosts Daniel and Victor chat with Erica Streisslberger, a self-advocate at CAMH and a recreation therapist. Erica shares her journey of achieving independent living and pursuing her dream of becoming a recreational therapist. The hosts and Erica delve into the significance of self-advocacy and how it can positively impact one's daily life. They also discuss Erica's recent venture of starting her own YouTube channel! Tune in to this insightful episode to learn more about Erica's incredible story and the importance of self-advocacy.

Join us for the first episode of our third season on IDD Get to Know Me! Podcast hosts Daniel and Victor interview Dr. Meghann Lloyd from Ontario Tech University. They talk about her journey with getting involved in Special Olympics and her exciting research about the benefits of participating in Special Olympics. Meghann Lloyd, PhD is an Associate Professor in the Faculty of Health Sciences at Ontario Tech University, and a Senior Research Associate at Grandview Children’s Centre. Her field of research is Adapted Physical Activity; she studies motor development, physical activity, and health promotion for people with disabilities.

This week Victor and Daniel talk to Danielle Strnad, the Executive Director and Founder and Senior Arts Facilitator Morgan Joy of DramaWay and DramaWay Productions. DramaWay Productions is a non-profit arts program for all abilities. As Morgan says, “DramaWay is a place that people come together to grow and create regardless of their backgrounds or abilities”. DramaWay and DramaWay Productions offers inclusive arts classes that range from visual arts, drama, physical activity and more. Danielle shares how she developed this company and how it has grown since its creation in 1999.

Heidi is a Special Olympics athlete and a leader. She has been a key member of many leadership committees including People First of Canada, PEI People, Special Olympics Canada’s Athlete Leadership Council, the Global Athlete Leadership Council, as well as the Athlete Representative for the Special Olympics PEI Board of Directors. Heidi joins us to discuss her various leadership roles and how she became the strong leader that she is today. Heidi also shares the importance of Special Olympics. Special Olympics provides programs for people with disabilities over the age of two and has many sports programs including both individual and team sports. Some of Heidi’s personal favourite sports include bowling, golf, and snowshoeing. 

On this episode, we speak with Lawyer and Disability Rights Advocate, Kerri Joffe. Kerri is a lawyer at ARCH Disability Law Centre. ARCH Disability Law Centre is a specialty legal clinic that practices exclusively in disability rights law. Respecting Rights is an initiative at ARCH, where self-advocates participate in programs to learn more about law and how to get involved with accessible rights education.  https://archdisabilitylaw.ca/

This week we have a special guest, Dr. Alan Santinele Martino. Alan is an instructor in community rehabilitation and disability studies at the University of Calgary. He researched the romantic and sexual lives of adults with intellectual and developmental disabilities in Ontario for his PhD at McMaster University. We have Dr. Martino on this episode to discuss his research and the experiences of people with intellectual and developmental disabilities in intimate relationships. Dr. Martino highlights stories from people with disabilities who have advocated for themselves or others and shares why this work is so important to him. He also shares what the barriers are to his research and sex education for people with intellectual and developmental disabilities.Dr. Martino’s website: https://alanmartino.com/Dr. Martino’s Twitter: https://twitter.com/AlanSMartino?s=20&t=DiV4e_kzatEjIgxrD2UqSwDr. Martino's Recent Publications:Santinele Martino, A. (2022). Ethically important moments: Researching the intimate lives of adults labeled/with intellectual disabilities. Qualitative Research.Santinele Martino, A. & Kinitz, D. J. (2022). “It’s Just More Complicated”: The Experiences of Adults with Intellectual Disabilities When Navigating Digital Sexual Fields. Cyberpsychology: Journal of Psychosocial Research on Cyberspace. https://cyberpsychology.eu/article/view/15180/16710Brennand, E. & Santinele Martino, A. (2022). Disability is Associated with Sexually Transmitted Infection: Female Sex, Severity and Disability Domain are Important Risk Factors. Canadian Journal of Human Sexuality. https://doi.org/10.3138/cjhs.2021-0053

Welcome back for another season of IDD: Get to know me! In the first episode of our second season, podcast hosts Daniel and Victor interview Dr. Yona Lunsky, the director of the Azrieli Adult Neurodevelopmental Centre. Together they talk about why inclusion is so important and different ways they are making the Azrieli Adult Neurodevelopmental Centre, and research at CAMH more inclusive of people with intellectual and developmental disabilities.Yona shares what motivated her to get involved and continue working in this field for over 20 years. She also discusses the importance of including self-advocates in her work. Yona shares some tips on how she makes positions accessible to self-advocates and what we can do to create accessible and inclusive work environments. Want to get involved with projects at the Azrieli Adult Neurodevelopmental Centre? Email us at hcardd@camh.ca

On this week’s episode of IDD: Get to Know Me we speak to Courtney Weaver and Alex Echakowitz about the just-released Mental Health Literacy Guide for Autism, created by the Autism Mental Health Literacy Project (AM-HeLP). The guide is designed to “increase awareness and share knowledge around issues related to Autistic mental health. This guide is meant to be read by everyone, but most importantly by Autistic adults, family members, professionals, policy-makers and leaders.” Alex and Courtney share their experience of working over the past two years with over 20 Autistic Advisors from across the country and researchers to help develop this guide. Tune in to hear directly from Alex and Courtney why this guide is so important and how they hope it will be used. You will also hear a fun fact you may not know about Alex, Courtney and our hosts! The Mental Health Literacy Guide for Autism was created by York University’s Dr. Jonathon Weiss and CAMH’s Dr. Yona Lunsky, as well as research staff and Autistic advisors. For more information and to download a copy of the guide, visit https://www.yorku.ca/health/lab/ddmh/am-help/

Siblings of people with disabilities often encounter unique challenges throughout their lifespan but their concerns are not always heard or acknowledged. In this week’s episode of IDD: Get to Know Me, Helen Ries, the founder of The Sibling Collaborative, joins us to share her journey as a sibling to someone with IDD and what drove her to develop The Sibling Collaborative. The Sibling Collaborative is a national organization that supports people who are siblings to someone with a disability, engaging with over 500 siblings from across Canada. The idea for the Collaborative emerged from Helen’s experience of becoming a caregiver for her sibling and the lack of support and information available to her. The Sibling Collaborative strives to support siblings who are going through similar experiences by providing connection, resources and research. Most recently, it has started to host virtual meetups to support siblings during the COVID pandemic. The Sibling Collaborative has worked with the Azrieli Adult Neurodevelopmental Centre at CAMH to study these special relationships. Recently the Azrieli Centre published a report The Experiences of Siblings of People with IDD during the COVID-19 Pandemic with support from The Sibling Collaborative. In this episode you will hear whether Helen would rather be the smartest or funniest person in the room (spoiler alert: she says neither!), her experiences as a sibling to someone with a disability, and what led her to start The Sibling Collaborative. To learn more about The Sibling Collaborative and how to get involved, visit their website or join their mailing list. You can also follow The Sibling Collaborative on Twitter and Facebook @SibCollab! Like what you heard this week? Don’t forget to subscribe and review our podcast wherever you are listening; this will help us grow our audience. Have topic ideas or feedback you’d like us to hear? Send us an email at Katie.Cardiff@camh.ca.

Sibling relationships are some of the most important in our lives-doubly so when autism or IDD are involved.  In this episode, Victor and Daniel chat with Victoria Cusumano and Nicole Bobbette on what it is like growing up with a differently abled sibling and how it can be different from typical sibling relationships. Victoria and Nicole reveal what their siblings have taught them, and how they have enriched their lives. We also hear their answer to this week’s ice breaker “If you could, what age would you stop aging at and why?”. Victoria is a fourth year psychology student at the University of Toronto. She has worked at the Azrieli Adult Neurodevelopmental Centre at CAMH in various roles over the past two years, supporting self-advocates involved in research. Victoria has also been a basketball coach with Special Olympics Ontario for five years. Most importantly, Victoria is a sister to Vanessa, who has Down syndrome. Victoria and Vanessa live together along with their brother and parents at their family home in Toronto, Ontario. Nicole Bobbette is an occupational therapist who has been working with people with IDD for the past 13 years. Nicole just completed a postdoctoral fellowship at the Azrieli Adult Neurodevelopmental Centre and is now an assistant professor at Queen's University where she teaches in the occupational therapy program. Nicole is passionate about collaborating with people with IDD in research to promote health and improve health services. Nicole’s primary and most important role is being an older sister to Allison, who has an IDD and lives semi-independently in Barrie, Ontario. Tune in next time when we speak with Helen Reise from the Sibling Collaborative.  You can follow Nicole on Twitter (https://twitter.com/nicole_bobbette). Like what you hear, don't forget to rate and review us wherever you get your podcasts! 

Advocacy and Inclusion in the classroom is crucial to people with IDD’s success in the education system. In this episode of IDD: Get to Know Me, Victor and Daniel explore why this is so important and the barriers that exist in creating inclusive classrooms. Victor takes us back to his high school experiences, when teachers really made a difference—and how they did that. Daniel reflects on his experience of completing his degree in communications at University, and his struggles for acceptance and accommodation. Victor and Daniel highlight the challenges of adapting to new social environments and how neurotypical people can better support those with IDD in the classroom. Join Victor and Daniel as they share a conversation about their experiences in the classroom, navigating the education system, and fighting for their right to tailored supports and transition services. Stay tuned for our upcoming episode on the sibling perspective with Nicole Bobbette and Victoria Cusumano.

In our third episode of "IDD - Get to Know Me", we interview People First of Canada President and current frontline worker Kory Earle. He discusses what it's like to support people with IDD during the COVID-19 pandemic and what drove him to join this line of work during the pandemic. Kory Earle works as a screener at a Long Term Care home in Ontario. In this episode Kory shares what being a frontline worker in a pandemic is like, and what he has found most rewarding. Kory is also the President of People First of Canada (https://www.peoplefirstofcanada.ca/), a national self-advocacy organization that empowers and prioritizes the voices of people with intellectual and developmental disabilities. Paraphrasing Kory’s words: People with IDD have always had these issues; the pandemic has made these issues more visible and apparent to others. He is also very passionate about mental health, and has spoken to this in policy forums as well as during a course for self-advocates on Mental Health during COVID-19. Once you've had a listen, watch out for Episode 4, where Daniel and Victor discuss their experiences growing up in Ontario's education system as people with IDD. Kory and Victor spoke at a Federal Policy Forum on International Day of People with Disabilities, where they shared the importance of mental health support for this population and how our course "Mental health for adults with developmental disabilities during COVID: A virtual course for self-advocates" offered much needed support and resources. You can read what they said here: https://www.porticonetwork.ca/web/hcardd/news/-/blogs/-idpwd-blog-12?_33 You can keep up with People First of Canada on Facebook (@PeopleFirstOfCanada) and Twitter (@PeopleFirstCA) Kory shared his story of getting the vaccine in a blog post and easy-read format, which you can find here along with our vaccine easy-read: https://www.hcarddcovid.com/info#vaccine

In this inaugural episode of "IDD - Get to know me", you'll meet our self-advocate hosts: peer support worker, social worker, writer, and motivational speaker Daniel Share-Strom and actor and Azrieli advisor Victor Pereira.  You'll find answers to biting questions such as 'What's the work experience like for people with intellectual or developmental disabilities and autism?', and most importantly, 'Just how much does a polar bear weigh?'.

In Episode 2 of “IDD – Get to know me”, Daniel and Victor interview Sue Hutton, a developmental disability social worker and mindfulness guru, on how the COVID-19 pandemic has impacted people with intellectual and developmental disabilities. Key takeaways from their discussion: people’s mental health is suffering, the government could be doing more, and this thing can’t be over soon enough. Tune in for Sue’s answers to critical questions of the day.     Sue Hutton has worked in developmental services for 30 years. After working at Community Living Toronto in direct service, rights training and advocacy, Sue moved to ARCH disability law center where she coordinates Respecting Rights, a legal rights education project led by persons with disabilities. Sue recently joined the Azrieli Adult Neurodevelopmental Centre at CAMH as a social worker and leads several mindfulness research groups.   In this episode, Sue shares her experience working with Respecting Rights at ARCH Disability Law Centre ( https://archdisabilitylaw.ca/initiatives/respecting-rights/). Sue also shares insights from an article coming soon (Feb/Mar 2021) to the Journal of Qualitative Social Work (https://journals.sagepub.com/home/qsw).   If this conversation piqued your interest, check back in two weeks for Episode 3, where we interview People First of Canada President Kory Earle on what it’s like to be someone with IDD who’s also working on the frontlines of the pandemic.   Follow Sue on Twitter @suehutton_msw and Facebook @suehuttonmindfulness Follow Respecting Rights on Facebook: @respectingrights Check out Sue's website: https://www.suehuttonmindfulness.com/

Parents and caregivers play an essential role in the lives of their children with IDD, helping to ensure their overall health and wellbeing, and supporting their social and emotional needs.  The complex role of caring for a family member with IDD can be both a challenging and rewarding experience for caregivers and their families. In this episode, we delve into the parent’s perspective of caring for a child with an intellectual or developmental disability, talking to CAMH's own Lee Steel and Amy Baskin. Join us and find out the highs and the not-so-highs of being a parent to an adult child with IDD, and the life lessons learned along the way. Lee Steel is a Family Advisor at the Azrieli Adult Neurodevelopmental Centre, where she brings the parent perspective to all of our research endeavours. Lee has been involved in the development and facilitation of the Azrieli Mindfulness and Acceptance and Commitment Training (ACT) Groups for Caregivers. Amy Baskin is a freelance writer and educator who has supported the creation of the Azrieli Centre’s mindfulness workbook and facilitated our most recent COVID-19 virtual course for family caregivers Course targeted at improving the mental health of caregivers during the pandemic. To view the video recordings from our course, Mental health for adults with developmental disabilities during COVID: A virtual course for family caregivers visit the course webpage and our YouTube channel. You can also visit our H-CARDD COVID page for up-to-date vaccine information and other resources. The Family Matters Toolkit includes tools and resources specifically for family caregivers, to help you and your loved one prepare and participate in health care visits: