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!

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.