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!

I Haven’t Forgotten My Chinese Orphanage Friend

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.