Navigating Disability and Rare Medical Conditions as an Intercountry Adoptee

Webinar, Perspective Paper and Resources

On 23 November, ICAV ran a webinar with 6 incredible panelists sharing lived experience as intercountry adoptees with disability and rare medical conditions.

It’s taken some time to edit this webinar and I hope you will take the time to have a listen. Adoptees with disability and medical conditions are often invisible amongst the intercountry adoptee community and our goal was to elevate them and help to raise awareness of the extra complexities they experience.

Webinar Video Timecode

For those who are time poor, I have provided a time code so you can see exactly the parts you wish to hear.

00:00:25 Welcome – Lynelle Long

00:03:51 Acknowledgement of Country – Mallika Macleod

00:05:15 Panelists Introduction

00:05:31 Maddy Ullman

00:07:07 Wes Liu

00:09:32 Farnad Darnell

00:11:08 Emma Pham

00:12:07 Daniel N Price

00:13:19 Mallika Macleod

00:15:19 The changing definition of disability – Farnad Darnell

00:17:58 Reframing how adoptees with disability can be viewed – Mallika Macleod

00:20:39 Processing the shame and brokenness often associated with being adopted and living with disability – Wes Liu

00:23:34 Dealing with people’s reactions and expectations – Maddy Ullman

00:28:44 Sense of belonging and how it has been impacted – Emma Pham

00:30:14 Navigating the health care system – Daniel N Price

00:31:58 What helped to come to terms with living with disability – Mallika Macleod

00:35:58 How disability might add some extra complexities in reunion – Maddy Ullman

00:39:44 The dynamics between adoptive parents and what is ideal – Wes Liu

00:42:48 Preventing the risk of suicide – Daniel N Price

00:44:26 Children being sent overseas via intercountry adoption because of their disability – Farnad Darnell

00:47:09 What people need to consider when starting off adopting a child with disability with “good intentions” – Emma Pham

00:50:13 How the experience of feeling isolated changed over time – Wes Liu

00:53:25 The role of genetics in her conditions – Maddy Ullman

00:56:35 What worked when facing employment challenges – Mallika Macleod

00:59:11 Becoming self sufficient and independent – Emma Pham

01:02:42 Suggestions for adoptive parents – Daniel N Price

01:03:48 Suggestions for adoption professionals to better prepare adoptive parents – Farnad Darnell

01:06:20 How adoptive families can best discuss whether disability was the reason for relinquishment – Farnad Darnell

Summary of Key Messages from the Webinar

Click here for a pdf document outlining the key messages from each panelist and the matching webinar video timecode.

ICAV Perspective Paper

For those who want to dive deeper and explore this topic further, we have also compiled our latest ICAV Perspective Paper which you can read here. It is a collation of lived experience perspectives offering a rare view into the lives of a dozen intercountry adoptees who live with disability and rare medical conditions. Together, these resources of the webinar and perspective paper fill a huge gap in knowledge about this subset within the intercountry adoptee community. I hope this instigates the beginning of further discussions and forums designed to help raise awareness and create better supports for and within the community.

I want to raise extra attention that within the in-depth sharing of our perspective paper and the webinar, those who contributed made numerous mentions of the heightened risk of suicide, depression, and isolation. We need to do more to better support our fellow adoptees who are most vulnerable living with disability and medical conditions.

Photography courtesy of Maddy Ullman and Wes Liu

If you have any additional resources that can help build upon what we have started, please contact ICAV or add your comment to this post, so I can continue to grow this list below.

Additional Resources

Rare Disease

#Rareis : Meet Daniel N Price – a rare disease advocate and intercountry adoptee

With Love August (intercountry adoptee August Rocha, a disabled trans man with rare disease)

Diagnostic Odysseys featuring August Roche (disabled trans intercountry adoptee with rare disease)

Once Upon a Gene – Rare disease intercountry adoption with Josh and Monica Poynter (podcast)

#Rareis: Nora’s Forever Home – a rare disease domestic adoptee

The Rare Disorder Podcast

Rare in Common (documentary of those affected by rare disease)

Rare Diseases International

Enola : an application by Medical Intelligence One that helps diagnose Rare Diseases, freely avail

One Rare – Young Adults Impacted by Rare Disease and Transitioning to Adulthood

Rare Diseases Clinical Research Network

Global Genes – Allies in Rare Disease

Disability

Adoptees with Disabilities (FB group)

International Adoptees with Disabilities (FB group)

Neurodivergent Adoptee (FB page by intercountry adoptee Jodi Gibson Moore)

We all have the power – Marusha Rowe (cerebral palsy advocate and intercountry adoptee)

Violence, Abuse, Neglect & Exploitation of Adoptees with Disability : Australian Disability Royal Commission submission by ICAV

Invisibility(ies) Session Five (video, led by domestic adoptee Nicole Rademacher who interviews adoptee artists Anu Annam, Jessica Oler, and Caleb Yee exploring how their art relates to their disability)

A Disability Primer: Reclaiming, Imagining, Creating Change (Conference recording, Nov 2022)

Unfixed – sharing stories of those living with chronic illness and disability

Chronically Capable – for job seekers with chronic illness and disabilities

Transitions of Care – Child Neurology (helping you transition from paediatric to adult care)

The Caregiver Series (videos, for adoptive parents)

Sing Me a Story (Stories and Songs for kids in need)

Watershed DNA (support and guidance to help those understand their DNA results)

Easterseals Disability Film Challenge (changing the way the world views and defines disability)

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