förbi Maddy Ullman, born in China and raised in the USA.
I wrote this on the last day of disability pride month (July).
I started disability pride month at a conference on a panel discussing the intersectionality of disability and adoption. The audience heard me and my truths saying things like:
If someone handed me a magic cure today, that would get rid of all my disabilities, I wouldn’t take it. I don’t know who I’d be without disability and there’s beauty in that.
Disability has taught me to be adaptive and resourceful. I have more empathy. More drive.
I am so proud to call myself disabled and I have cultivated a full life with it.
That is my truth.
It is not my only truth, though. In all honesty, I am exhausted. I am angry. This world is not made for anyone with disabilities in mind. Lately, I’ve been feeling the weight of my existence. Let me tell you more. It takes so much more every day to exist and function in society with any health condition. I work hard just to exist. The people around me have to do more if the environment isn’t accessible.
Disability is the one of the few marginalised groups anyone can be a part of, at any time in their life.
For the first time, I brought my walker to a conference. It absolutely saved me. The walker is something I’ve had to struggle with my vanity to use. Even though it helps me out so much. My walker is a beautiful red colour, carries so much, and I walk better with it. Still, it’s a struggle to use what helps me so much. There is accessibility but it’s usually far and hard to find. Little things like doors make all the difference. Especially when the doors are heavy.
I love my walker. What does it say about society and accessibility when it actually takes more thought for me to use what helps me? This internal struggle is something I’m always at war with. One day, I aspire to use my walker every day with pride.
I have to remind myself every day. Yes it’s okay for me to take up space. I am worthy of that space. I have to give myself permission to be enough. I am always prepared to make that space if it doesn’t exist on its own. Spoiler alert, I often have to carve it out with my bare hands. Every time I step into a room, I have to set the standard. I have to be extraordinary.
With all that said, I am choosing to honor disability pride month by allowing myself to sit in the discomfort. I give myself permission to be enough and live well without guilt and matter what productivity the day may bring.
Friends, please remember your existence is enough and you are worthy of whatever space you may hold. ❤️
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.
Obs! Om du tittar i Chrome klickar du på knappen Läs mer för att titta på videon
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
Klick härfor 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 readhär. 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.
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)
förbi Lynelle Long (Founder of ICAV adopted from Vietnam to Australia) & Angela Bennett adopted from South Korea to the USA, living with different abilities.
Last year due to COVID, I ran a number of online video group events to allow our adoptee community some interaction given the restrictions and isolation around the world. Whilst doing this, I had the honour of Angela attending one of my events and I did not realise she is differently abled and during the group video discussion, I realised I needed to make accomodations to ensure all people could participate equally and with sensitivity. Some time after that event and in January this year, I collaborated with a few Australian intercountry adoptees to put together our first paper on lived experience of disability AND being intercountry adopted – in the context of a response to a Royal Commission into Violence, Abuse, Neglect & Exploitation of People with Disability. It again reminded me to consider how I could help make our spaces more inclusive. So I wrote to Angela and asked her for feedback on what could be done better. I’m sure there are other leaders like myself who don’t mean to be un-inclusive, it’s more that if we don’t live with those differences we aren’t actually forced to think about HOW we might better accomodate others. Angela was very positive and helpful and I wanted to share her thoughts because I figured if I can learn from this, perhaps others can too.
Here’s what I wrote to Angela:
Angela, I wondered if you could give me some good thoughts/ideas on how to do things better for adoptees who are differently abled. I was so happy to have you participate in my last ICAV online event but I felt so out of my depth to provide it in a better way to allow you fully participate. I’m always happy to hear your views and suggestions on how I can improve!
Here’s what Angela wrote to me in response:
That last ICAV event was awkward for me. Inclusion for people with disability is a lot to undertake. I think it’s pretty awesome you want to try to tackle it. It looks different based on the disability.
I’d say for me with the speech impediment, I talk 3x slower than the average American. There’s nothing wrong with my intellect. There’s certain sounds or combination of sounds that is like mouth gymnastics. So be mindful to avoid cutting me off/interrupting to finish my sentence for me. It’s better to wait about three to five seconds to make sure I’m done speaking. I often have to pause to inhale for another set of words. Cutting me off just resets from the beginning. Because I talk slower, I feel like I’m long winded. I get needing to have time to let others speak. I often wait until others speak. This is because I’m trying to see if I can simply say, “I agree,” or “So-and-so made a good point, and I also think _,” and just go from there to do less talking.
When I’m done speaking and you’re facilitating/hosting, to benefit the others, you did good in repeating or paraphrasing my point. In your position I would just do that, but start with, “What I think you said, __, is that __. Am I understanding correctly? This helps the other adoptees who have a hard time deciphering my speech pattern and acknowledges in a kind polite way what I said. If you, yourself can’t understand using the following statements can be helpful: “I didn’t catch what you said after __” It’s hard to hear you, can you repeat that last sentence? Can you speak louder? I/we want to understand but not sure of what was said. Can you say it in a different way? I think you said, ‘porcupine,’ but I don’t know what you’re trying to say. Is that like the animal with spikes on it? (wait for response) Oh, you said concubine not porcupine! Ha ha, that makes much more sense now. I have no idea what you’re trying to say. What I think/heard/believe you’re saying is __? That doesn’t make sense. Do you mind clarifying?
I get winded so sometimes I pause mid-word, mid-sentence, mid-answer to take a breath and regain control of the different muscles needed to speak. Sometimes this could be the diaphragm, sometimes the vocal cords, sometimes it’s my tongue and saliva control. It doesn’t hurt to speak, but it can sometimes quickly tire me.
If you’re video/audio recording an adoptee with speech that is challenging to understand, I recommend providing closed captions or subtitles or at minimum a timestamped transcript. This brings the inclusiveness not just to someone with a speech delay or impediment, but brings inclusiveness to those who are deaf and hard of hearing.
I’ve only provided an answer in the context of someone with a speech delay, speech impairment. People often assume someone with speech problems have lower intellect. While it is predominantly true, it is not a safe assumption. Most of what I’ve said is a form of what is called “active listening.” One important thing is that there is a distinction between not hearing what someone says and not knowing/comprehending. Simply saying, “what?” suggests the speaker needs to repeat what they said, but louder.
My speech pattern often means I drop sounds and I’m not even aware of it. I know English has a lot of silent sounds to begin with. But I drop out sounds that I have trouble forming or combining. So I might drop the “s” from thanks even unaware that I dropped the ‘s’ sound because most of my effort went to making the “th” sound. I know the words, I just have to get everything to work together to verbalise.
If you want me to type in chat, circle back around. I type fast, but I mouse slow. You can say something like, “I’d love to know what you think Angela. Do you want to answer or should we come back and check the chat in a couple minutes? Then maybe you can use a strategic stall tactic and say, “I want to add my own thoughts here for a minute.”
Avoid cross talk. Cross talk is rude. Short example was the post you responded to which I wrote about on my FB wall. The driver was talking about meto my friend. I was right there. The statement itself is rude, but the more important thing is that not only was he stereotyping someone who uses a wheelchair, but stereotyping that I am not capable of carrying on a conversation. When things like that happen I have no way of knowing if this is someone not comprehending my speech patterns, or he/she has a hearing problem, or if they are discriminating against me, if they have listening problems, if they are stereotyping my speech and assuming I am not intelligent/educated enough, or if it’s a microaggression based on something else like culturally am I not supposed to speak on my own behalf because of racism towards Asian females. I heard a parent explain it to her child once. “There’s nothing wrong with the way she is talking to us. She talks differently and it means we have to listen more closely to what she says.”
During a conversation you can even ask, “Do you want to add anything and/or did you have more to say?” Silently moving your own mouth to mimic someone else talking while they are talking is mildly rude and annoying for long conversations, but it’s not significantly offensive generally speaking.
Even persons with disabilities have ableist ideas against someone else with a disability. Much like the adoptee community has its ideas of “adoption is good” v. “adoption is corruption” even in local disabled groups …. I recently went to a popular sports bar. I asked the waitstaff for closed captions to be turned on the tv. The waitstaff didn’t want to figure it out unless someone in our group was deaf. So the group leader shushed me. I was appalled because it felt like the group leader who is paralysed was not being mindful of someone with a different disability and that was the whole point, to be a social support group.
I’d love to see and am also willing to assist with developing a media/guide for intercountry adoptees with disability or even more of a series of stories from adoptees with disability themselves.
Thank you Angela for sharing from your lived experience to help us do better!
Do I look like my father or mother? What is my real name? When was I born? Who am I really? I have been going through these questions my whole life and not quite sure if I will ever find the answer.
I was born in Vietnam, adopted by a white family in Canada in the early 70’s. I am part African-American and Vietnamese but I look more African-American, and I’m also physically disabled which I contracted from polio and a gun shot wound (something I have been told as a child, but not sure if it’s true). I have always known I was different growing up, not because the colour of my skin but because I was disabled. When I arrived to Canada I had to go to the hospital for many surgeries to straighten my legs and back due to scoliosis. When I arrived home from the hospital, this is when I felt I didn’t belong in the family. As a young child I was stubborn and barely spoke because the effects of leaving Vietnam and being in a different environment, I was overwhelmed.
Being an African-American Asian disabled child, living in a white world, I knew I was different and I wanted so much to fit in. At an early age, I knew that my adoptive mother treated me different than my other siblings. They had two other biological children along with another adopted child from Children’s Aid Society, so I was the black sheep in the family and that was my nickname to other family members and neighbours. My adoptive mother wasn’t the perfect mother everyone thought she was behind closed doors. Using my wheelchair was forbidden in the house so I had to always crawl around on the floor and carpet, but leaving marks on the carpet didn’t look good and caused my adoptive mother to always vacuum, so I had to have my bedroom moved down in the basement – being isolated away from my siblings. Whenever my siblings would come down to play with me, they were sent back upstairs and told not to play with your “black sheep” sister. Being alone in the basement, I stopped talking and had to entertain myself as a child. From not talking, my vocal cords didn’t develop well so whenever I went to school, I had trouble interacting with other students and was bullied and labelled as being dumb.
My adoptive mother always told me I should be grateful to them for adopting me. I always kept my feelings inside because if I told them how I really felt, I would be beaten. I always had to thank her for saving my life every time I did anything wrong. The first time I said “I wish you’d never adopted me” my adoptive mother emotionally and physically abused me. Sometimes I wouldn’t care what she did to me, I was happier just to be in my own shell in the closet.
I was never involved in any of the family gatherings or family vacations. I would always eat alone after everyone else ate. The one memory I will never forget was when my adoptive family went away to Florida and I wasn’t allowed to go because my adoptive mother said “black and crippled children were not allowed”. I went to the mirror and looked at myself. I wanted so much to be white that I scrubbed my skin so hard but it just turned red. I pushed my wheelchair down the stairs and tried to push myself up to walk, instead I fell down and was left lying on the floor for days until a neighbour found me bleeding. Instead of being a good neighbour and help a young girl, he took advantage of me for days while my family was away having fun. When my family returned, I tried to tell my adoptive mother what happened. All she said was, “You were looking for attention and that’s what you deserved”.
I wanted so much to be a part of the family to the point that I would agree to clean the house. My adoptive mother would always introduce me to her friends as the “black maid of the third country”. My adoptive mother emotionally abused me by continuing saying she never wanted me because of my disability and skin colour. She didn’t think I would turn out to “be soo dark” and a troubled child needing therapy appointments. All I wanted was to make my adoptive mother proud of me, but nothing I did ever satisfied her. Whenever my siblings got into trouble, I would stand up for them and would lie and steal for them so they would play with me. There were times I would sneak food at night because I was so hungry but whenever I got caught, I was sent to the closet for days. Nothing I did was good enough for my adoptive mother.
When I was 11 years old, I was told that I was leaving the family and spending a few days somewhere else. I didn’t know what I did wrong. That night I stayed up all night rethinking the day – what did I do to displease my adoptive mother. All she told me was I would be going to a better place that can care for my “crippled-black” behaviour. I cried the whole way begging my adoptive mother that I would be a “good girl”. Four hours later I was dropped off to a big stone house with lots of stairs and other children running around the living room. My adoptive mother told me it was only for a few weeks and that the family will help me with my behaviour. For the next few days, all I did was sit by the window waiting for my adoptive mother to return. Days turned into weeks and weeks turned into months. I had to eventually realise that I was staying in this house and no-one was coming back for me.
I was living in a house with 25 other children. I tried to fit in and be a part of the family but still felt like an outcast. Even though I was not the only disabled child, I felt that I didn’t belong. I found out that the foster mother of this home, was the woman who helped my adoptive parents adopt me from Vietnam. The foster mother had an organisation that helped Canadian and American families to adopt children from third world countries out of orphanages that she opened. I wasn’t the only child adopted and sent to the foster family. During the years, living at the foster family I became a reserved and quiet child and during my teen years I still wanted to know “who am I”? I asked the foster mother if she knew anything of my birth mother and every time I asked her, the answer was always, “Wait until you are eighteen”. From then I just left the question alone and tried to live my teen years in the home.
When I first went to the foster family, I was placed in a school with other disabled children but I felt it wasn’t for me. I wanted to be independent and be left alone so I became very stubborn especially during therapy sessions. Having therapists lift my legs and try to stretch them wasn’t working for me, they tried to get me to use braces and crutches, I definitely didn’t want that. So they finally agreed for me to use a sports wheelchair and what freedom I felt!! Using the wheelchair built up my teen arms and I became very strong, during recess time. While other children were at therapy, I could be found in the gym bouncing basketballs. This is when a sports coach saw me throw my first basket and she asked me, “Do you want to be an athlete and travel?” I quickly answered her, “Yes!” Little did she know that I didn’t just want to be an athlete but I wanted to travel so I could be out of my foster house as much as possible. My foster father was abusing me whenever we went to the family home in Montreal every summer, so whenever I found out that I would be travelling in the summer – I looked forward to the summer knowing I would be out of the country!
If it wasn’t for that sports coach, I wouldn’t have been able to be the Paralympian athlete I am today. I have travelled to many countries and won numerous medals, but a part of me felt that I didn’t deserve it. Whenever I was away, I still felt like an outsider to my team mates and other athletes. Deep down I believed they all knew who they were and they always talked about their family. With my timidness, I still had trouble interacting with my team mates. By the end of every trip, I dreaded going home because I knew what I was going home to.
My foster family didn’t really recognise my athletic achievements. There were times they didn’t even know I went away for a week because there were so many children in the house and the foster mother was busy with her work. I remember one time I arrived home from my first competition where I’d won my first 5 gold medals (being the youngest on the team) and when I arrived home, I just sat at the front door with my bags waiting for someone to greet me. When my sister came down the stairs to see me she just said, “Are you running away?” From that moment, my enthusiasm just dropped from my heart and I wished I could just run away. So from then on, I just continued on with my competitions with no feeling of accomplishment, feeling like a nobody.
I competed in two Paralympics, two PanAm games and many small competitions. When I won my first Paralympic 5 gold medals, I was interviewed by the paper but a lot of the words written were just not true. The story portrayed a young girl winning medals from a foster home that cared for her, but they really didn’t know the truth.
I am grateful for the foster family to let me stay with them, but behind closed doors they portrayed themselves as looking like the perfect couple helping many children. The house was not accessible, I continued to crawl up and down stairs to get to my bedroom, and I had to crawl up and down and bring my chair down stone stairs outside to get to my school bus.
My whole life living in the foster family, I wanted so much to be out and living on my own. When I turned 16 years old, I finished high school and left the foster home. I went to college and received a degree in Business Administration.
Throughout my life, I always felt unloved and not wanted by anyone. I thought of my biological mother not wanting me, my adoptive mother not wanting me and within the foster family, I was just “another child”. I have tried my best to do right things, never gotten involved on the wrong side of the law, etc. I always felt I didn’t fit in anywhere, had trouble with social gatherings and interacting with adults my age. To this day, a large part of me continues to feel isolated, not wanted and most of all not knowing who I really am.
Recently, I decided to register with 23&Me to know my background and I discovered I have many 2nd and 3rd cousins out there. I was surprised to know that I have some sort of distant family out there but disappointed to not have any information about my parents. I just want to have the feeling of belonging. Growing up, I never had that feeling.
Hello. My name is Thomas Fernandes but everybody calls me TJ. I was born in Nanjing, China in August 1998 as Yu Ming Yang. I was found with baby formula at only 4 months old which makes me honestly feel that my Chinese family cared about me.
I was adopted by awesome family at the age of 6. I have three siblings and my older brother was also adopted from China. My parent also adopted my sister from India. I was also born deaf with microtia which is an ear deformity. My sister from India is also deaf like me. This mean that when I was adopted into the family, the communicate was not that hard because they were already familiar with creating an environment supportive of deaf kids. We would communicate by pointing to things and using actions. My parents were a doctor and nurse so they knew medically what was best for me. I am truly grateful for what they have provided to me and my sibling.
I was 7 years old when I started to learn my first language which was American Sign Language. I used sign language until I got my hearing aid at around 8 years old and from then, I was able to learn how to speak English. I went to the South Carolina School for the Deaf until 8th grade. Then I went to MSSD (Model Secondary School for the Deaf) which is on Gallaudet University (a well known university for deaf and hard of hearing students). After graduating from MSSD, I am currently at RIT (Rochester Institute of a Technology) for my IT Technician major (3rd year). I am also currently studying Korean and Chinese at the same time.
In thinking about my past, I learned that my orphanage, known as Changshu Children’s Welfare Institute (in Nanjing, China) is a place for children who have a disability and with special needs such as down syndrome, cerebral palsy, blindness, deafness and heart disease. The nurse put me in a room where it has many beds and I remember that my bed was near the wall. I did try to make a friend but I noticed their mouths moved a lot and I knew that they were hearing. I tried to talk with them but I didn’t know how to speak Chinese.
Lucky for me, I did make one friend and she didn’t talk. She was very hyper so I decided to hang out with her. Surprisingly her bed was right next to me. We always communicated a lot about what we saw in the books and on the television. Her and I would always watch Teletubbies shows and my favourite character was the red one. I think she might have been deaf too because she seemed normal to me.
One day I saw her with a group of people. That was when I knew she was going to be adopted. I was deaf at that time and didn’t have a hearing aid. I tried to get her name so I ran to school (in the orphanage) to get a note so that she could write her name and I could find her when I got older. But since she was deaf, she didn’t know her name either. I also didn’t know my name at that time. We only knew our character name but didn’t understand how to write it. So I went to nurse and pointed to her, then at the paper, trying to communicate – could she put my friend’s name on the paper – but they didn’t understand me. I was left crying and bawling hard because I wanted her to be my best friend for rest of my life.
I still think about her and wonder how she is doing. I hope I see her again one day. That was the most heartbreaking experience for me. I do think of her and hope she’s doing great. I hope she was adopted by an amazing family just like I have because she deserves it. Maybe I might find her someday, maybe in one of the groups for asian adoptees?
I wish I knew her name! Hopefully she’ll recognise my orphanage photo and remember me. If she does, she can contact me here.
