作为跨国收养者应对残疾和罕见疾病

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.

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.

注意:如果在 Chrome 中观看,请单击“了解更多”按钮观看视频

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

点击 这里 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 这里. 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 联系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)

Disability x Adoption on The Janchi Show (podcast)

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

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

The Rare Disorder Podcast

罕见的共同点 (关于罕见病患者的纪录片)

罕见病国际

LGBQTi and Rare Disease resources

One in 5000 Foundation

埃诺拉 : 申请者 医学智能一号 帮助诊断罕见病,免费使用

一种罕见病——受罕见病影响并正在向成年期过渡的年轻人

罕见病临床研究网络

全球基因——罕见病的盟友

EveryLife Foundation for Rare Diseases

Syndromes Without A Name (SWAN)

失能

残疾被收养人 (脸书群)

国际残障人士 (脸书群)

神经分歧的被收养者 (跨国收养者 Jodi Gibson Moore 的 FB 页面)

我们都有力量 – Marusha Rowe(脑瘫倡导者和跨国收养者)

对残疾被收养人的暴力、虐待、忽视和剥削 : ICAV 提交的澳大利亚残疾人皇家委员会

Invisibility(ies) 第五节 (视频,由国内被收养者 Nicole Rademacher 主持,他采访了被收养者艺术家 Anu Annam、Jessica Oler 和 Caleb Yee,探索他们的艺术与残疾的关系)

残疾入门:回收、想象、创造变化 (会议录音,2022 年 11 月)

不固定 – 分享患有慢性疾病和残疾的人的故事

长期有能力 – 对于患有慢性疾病和残疾的求职者

护理过渡 - 儿童神经病学 (帮助您从儿科过渡到成人护理)

看护者系列 (视频,供养父母使用)

给我唱个故事 (为有需要的孩子们准备的故事和歌曲)

分水岭DNA (支持和指导帮助那些人了解他们的 DNA 结果)

Easterseals 残疾电影挑战赛 (改变世界看待和定义残疾的方式)

家庭健康:现代美国的残疾、收养和家庭

发表评论取消回复

简体中文
%%页脚%%