Equity and Inclusion in Social Media Spaces for Adoptees who are Differently Abled

by 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 me to 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!

Autism and Adoption

by Jodi Gibson Moore born in the UK and adopted to Northern America.
This is part 2 of a 3 part series written for Autism Awareness Month.

April is Autism Awareness Month

I always knew I was “different”. It took 40 years of almost continuous searching to find the right words for my kind of “different”, although being internationally adopted had a lot to do with it. My father’s sister took me from my home country when I was 21 months old, with the help of her mother, my paternal grandmother who was my guardian at the time. My aunt and uncle finalised their adoption of me when I was almost four. They would have told anybody that I seemed to have “adjusted” to the multiple disruptions in those early years but my behaviour screamed otherwise and I never bonded with either of them.

Growing up, I always knew I was adopted; I don’t remember being told or having to be told. My adopters told me about my flight from England with the woman who adopted me and her mother, my grandma. They talked about me being sick on the plane and how surprised the man who would later adopt me was when he picked up his wife and mother-in-law at the airport, and there I was with them. They laughed at my childish attempts to say their first names. Later, they would punish me for calling them by their names. I always knew they weren’t my parents but they wouldn’t answer any of my questions about my parents or my origins. I was told I came from the puppy farm, like Snoopy in the comics and I learned they expected me to pretend I was their daughter or else I would be lectured and punished. That didn’t sit right with me. I knew babies came from their parents and since I hadn’t come from them, they weren’t my parents. They made me go along with their pretend game but I got in trouble for pretending and making up stories. I was 12 years old when the woman who adopted me finally told me she was actually my aunt. I was angry at her for lying to me all this time and betraying me but I was glad I finally had a category to put her in: auntie. When I told her I wanted to call her that and her husband “uncle”, she yelled at me and told me not to. I had broken the rule of not upsetting her, so of course it was my fault, not hers for keeping a secret from me for ten years. She apparently had a medical condition and I wasn’t allowed to say or do anything to upset her and my uncle, who hadn’t wanted children in the first place, had a bad temper and yelled a lot. Instead of blaming him, she used to tell me she’d never heard him shout before I came along – so that was my fault too. They had me walking on eggshells the whole time I lived with them and I was too clumsy not to shatter them.   

At the age of 41, I finally received an official medical diagnosis of autism spectrum disorder, Asperger’s subtype (this was around the time the DSM-5 did away with the separate diagnosis of Asperger’s and merged it with autism spectrum, so the updated diagnosis is level 1 ASD) along with ADHD, sensory processing disorder (SPD), and developmental coordination disorder/dyspraxia. Had I been diagnosed in early childhood, doctors, educators and my aunt and uncle adopter would have understood why I had trouble focusing at school or transitioning between activities, didn’t always understand verbal instructions, wanted to wear dark glasses even on cloudy days, didn’t like making eye contact with others, talked more comfortably with adults than children, “switched off” at times, and couldn’t stand on one foot for more than about three seconds. All of the symptoms were documented in my medical files when I was 5 but that had been the late 1970s and there wasn’t much awareness of “high functioning” autism back then, especially in girls.

As I was trying to decide how to approach this topic, the intersection of adoption trauma, international adoptee status, and disability/neurodiversity, it occurred to me that there is much symptom overlap and several parallels between developmental trauma and autism spectrum, along with other conditions comorbid with ASD. These conditions include, as I mentioned above, ADHD, SPD and other possible processing differences that impact how we take in information. We may have trouble understanding instructions for a variety of reasons. I remember being a little kid in daycare trying to open a bag and getting yelled at repeatedly to “untwist the wire.” I didn’t know the strip of green paper concealed a wire. All I saw was paper. The daycare woman didn’t have a lot of patience with me or think very highly of my intellectual abilities. Between her and my aunt and uncle adopter, I grew up feeling like I was stupid. My aunt constantly spoke in euphemisms or British colloquialisms that nobody else around me used and I couldn’t understand what she meant and she wouldn’t explain them for me. It was like a secret code I couldn’t crack, or a foreign language. She just didn’t like to call things what they were, the same as when she refused to tell me what she knew about my background, which deprived me of a lot of the grounding and structure I needed. I learned not to trust her. I learned to be ashamed of the ways in which I was different; I learned to hate myself for the things that set me apart from everybody else. Very few people focused on my strengths, but everyone commented on and most made fun of, my shortcomings.

Is it adoption or autism?

I probably ask myself this question several times a day and more often than not, it leads to overthinking and no definite answers. Social anxiety, difficulty identifying or verbalising emotions, keeping lots of space between myself and others – “social distancing” is a way of life for me – and not knowing how to participate in group activities may be signs of hypervigilance and consequences of preverbal trauma rather than autistic behaviors. Not picking up on social cues? My aunt adopter thought I just didn’t want to pay attention and I don’t know how she perceived my inability to interpret her veiled speech. The fact I viewed the adopters as guardians instead of parents, literally as my aunt and uncle when I found out the truth, could be simply realism and logic. In my mind, my aunt and uncle couldn’t be my parents. I didn’t even meet them until I was almost two and I never felt close to them or safe with them. That could be autistic black-and-white thinking but there are other things I remember or have been told from my early childhood. I learned to read early when I was three, but even before then I could identify almost any car on the road. My uncle adopter used to laugh about the time he caught me lining up my grandma’s cigarettes in front of the fireplace, making sure they were exactly straight and doing the same thing with my toy cars. I’d prefer to use dolls to act out the stories in my head than play with other girls. Due to the neighbourhood and the fact my aunt and uncle adopters were old enough to be my grandparents, I didn’t have a lot of kids to play with other than their friends’ children. I always thought their age and the huge generation gap was the reason I didn’t really know how to socialise and “hang out” with girls my own age and found it easier to talk with adults if they didn’t intimidate me, but that seems to be another autistic trait.

Even hypersensitivity to rejection, which seems to be an almost universal part of the adoptee experience (after all, we perceive early maternal separation as a rejection or abandonment) can be attributed to rejection sensitivity dysphoria (RSD), a recently identified condition often comorbid with ADHD and autism spectrum. Autistic individuals tend to like routine and order, need to be prepared well in advance for changes or disruptions, and I can’t think of a worse disruption to a small child than being separated from their whole family in one day, uprooted from their home and placed with strangers in a different sensory environment. Strangers who look, sound, and smell different; strangers who aren’t tuned in to the child’s needs and could overwhelm them; strangers who want to touch and hold the child when the child needs to keep a safe distance and may have an aversion to being touched.

I often ran away from the adopters as a child and adolescent. Sometimes I’d walk far enough ahead of them so that nobody would associate me with them; sometimes I’d lose them in stores; sometimes I’d wander away from them on outings. I’ve heard that a lot of autistic children do this, perhaps because of impulsivity, distraction, or just a lack of concern for safety. For me it was an escape behaviour, the “flight” aspect of the stress/trauma response. I just didn’t want to be around them – had to get away from them. I might have been distracted by somebody who reminded me of a parent or someone else from home (this may often be the case with older adoptees) or I may have been hoping that someone would find me and return me to my parents – help me get back home. It never happened.   

In what some might call “typical ADHD,” my thoughts often go in several different directions, probably giving me enough material to write a whole series on neurodiversity and how it intersects with adoption, and maybe I will. But it needs to be said that adoption, and more specifically the act of early maternal separation sets us up for “trauma brain” regardless of genetic predisposition to certain neurotypes. I first read about Nemeroff’s (1998) research involving rat pups separated from their mothers for a few hours a day during infancy and the impact this had on their neurological development, the effects of which persisted into adulthood, in a psychopharmacology textbook (Meyer & Quenzer, 2018). Other researchers are still performing these studies and documenting the same outcomes: anxiety, increased sensitivity to stress, depression-like behaviours, emotional dysregulation, eating disorders, and metabolic disorders throughout the rats’ lifespan. And unlike the rats, we adoptees aren’t returned to our mothers or siblings when that phase of the experiment ends. It’s not a perfect comparison, but research ethics officially prohibit doing similar maternal separation experiments on human infants. At least, now they do. Watch the documentary Three Identical Strangers and see for yourself.

My doctor who diagnosed me several years ago with ASD and Asperger’s syndrome told me at the start of my assessment that childhood trauma doesn’t cause autism (for that matter, neither do vaccines); it’s a genetic condition. However, I believe that developmental trauma such as early maternal separation may have a deeper impact on certain neurotypes; we may be more sensitive to early stressors or less resilient. Trauma responses may increase – or be mistaken for – neurodivergent traits. For example, adoptees, especially those of us adopted internationally and/or after our first birthdays like myself, can display self-calming/self-soothing behaviours (Tirella & Miller, 2011) that resemble what would be called “stimming” in autistic children and which I would call an attempt at emotional regulation following a profound loss. We adoptees don’t always have, or eventually get, access to our family medical history so we don’t know what we’re at risk for but as the rat studies found, the non-separated rats developed typically while their separated littermates, who shared the same DNA, did not. We don’t have to have a documented family history of autism, ADHD, anxiety, or depression to develop these traits after a severe developmental trauma.

While there is more understanding over the last few decades of the neurological impact of early maternal separation or parental loss that precedes adoption, there needs to be more research into how this overlaps with autism spectrum, ADHD, sensory processing differences and other neurodivergent conditions. My hope would be that adoptees’ needs and vulnerabilities can be addressed in early childhood when we would most benefit from interventions – and perhaps more can be done to prevent these traumatic separations in the first place.

Resources:

Meyer, J. S. & Quenzer, L. F. (2018). Psychopharmacology: Drugs, the Brain, and Behavior, 2nd ed. Sinauer Associates, Sunderland, MA.

Tirella, L. G., & Miller, L. C. (2011). Self-Regulation in Newly Arrived International Adoptees. Physical & Occupational Therapy in Pediatrics, 31 ), 301–314.

See Jodi’s part 1 of a 3 part series for Autism Awareness Month: Puzzle Pieces.

The Duality of being Disabled and Adopted

by Erin E. Andy (지현정), adopted from South Korea to the USA.

March is Cerebral Palsy Awareness Month.

As someone who has lived with this condition all my life, I can say it’s a struggle. As someone who is a transracial intercountry adoptee on top of it, I have felt conflicted about my identity.

There are times my limbs do the opposite of what I want them to do. There have been times I’ve had difficulty getting out of bed when my body is too fatigued by the spasms. There have been times I’ve had to take extra doses of medication to calm myself so I can function in my daily life. There are more times than I would like to admit being stared at for the way my body acts. I’m fully aware of the judgemental looks I receive, which makes my body involuntarily tense up even further. I can never hide my excitement or nervousness as my Cerebral Palsy gives my emotions away.

When people joke about “maybe I should use a wheelchair instead of walking”, it comes across as insensitive. Yet those jokes persist. It can be tough at times to see people mock those of us who can’t control our bodies.

Growing up with Cerebral Palsy, it was difficult enough to fit in, constantly being reminded by my wheelchair and its restraints that I was different. However, on top of coming to terms with my disability, I had to face another aspect of my identity: being a transracial intercountry adoptee.

Within my adoptive family, I felt somewhat comforted knowing I was being raised with other Korean adoptee siblings as well as having a dad who is of Japanese descent. However, going out with my mom was a stark reminder that I was adopted. I don’t look anything like her, and seeing strangers looking at us curiously made it clear that this was different; that I was different. Only when our family attended campouts with other families with adopted kids did I feel comfortable. I wasn’t the only one who was disabled and adopted. I felt accepted. They normalised my existence.

With that said, it was difficult as I grew up to come to terms that my biological family relinquished me. I often wondered why. I was told they were trying to give me a better life, but the pain and rejection of being given up is difficult to reconcile with their good intent.

I never asked to be disabled. I was angry they gave me up so easily. I never understood the reason, at least not for quite some time. I was given up at the age of five, so I knew my biological family, but even so, they made the choice to relinquish me to Holt Adoption Services. I stayed in a foster home for a little while until the adoption agency found a family to adopt me.

Upon going back to Korea in 2014 for a reunion with my biological mother and seeing my homeland again, I came to an uncomfortable realisation: I hardly saw anyone in a wheelchair on the streets in Seoul. I didn’t see anyone else like me outside of my tour group who had a physical disability like Cerebral Palsy. It wasn’t until we went to an orphanage in Ilsan that I saw a few people with physical disabilities. I was confounded and ultimately disappointed. After coming back from Korea, I saw videos and articles over the years of how they viewed the disabled.

Would I have been here in the USA if I had been born head first and given the oxygen I needed to avoid having this disability? What would my life have been like if I stayed in Korea? Would I have been placed in an orphanage as I grew older, or would I have been sent to an institution to live the rest of my days hidden away from the outside world? To this day, I ponder what my fate would have been, had I not been adopted.

My adoption came about because of my Cerebral Palsy, but the struggle of each doesn’t deter from the other. While I still mourn the life which could have been had I never been disabled, I know this life is worth living, here in the USA.

I have a loving husband, many friends from various places, families who care about my well being, and perhaps the biggest thing, the ability to thrive.

I never asked to have Cerebral Palsy or be given up for adoption…

But, even so, I’m here. I exist. My condition is not who I am nor should it define me.