Episode 187: Music, AAC and disability advocacy with Kaishawna, a Black Autistic Deaf musician

The episode transcript is below.

Carolyn Kiel: Welcome to Beyond 6 Seconds, the podcast that goes beyond the six second first impression to share the extraordinary stories of neurodivergent people. I’m your host, Carolyn Kiel.

On today’s episode, I’m speaking with Kaishawna, a 21 year old Deaf Autistic woman who attends college and is studying to become an educator to current and future autistic, neurodivergent and disabled students.

When we recorded this episode together, we used the automated captions feature in our Zoom meeting, which displayed the text of what we were saying live on our screens. It’s a pretty great accessibility feature!

Kaishawna is unreliably speaking, which means she can’t always rely on speaking as her primary means of communication. During this interview, she mostly uses a form of Augmentative and Alternative Communication, or AAC. Specifically, she’s using a text to speech app on her iPad. After I ask Kaishawna a question, you’ll hear a silent pause as she types her response. These pauses last anywhere from a few seconds to a few minutes. She asked me to keep these pauses in the episode to encourage people to show patience to AAC users who often need time to respond in a conversation and to wait for their responses without rushing them.

Kaishawna, welcome to the podcast.

Kaishawna: Ah, thanks for having me.

Carolyn Kiel: So happy to talk with you today. You are a relatively recent user, I understand, of AAC. Tell me how you got started using AAC.

Kaishawna: I started using AAC in college just recently because I grew up mostly speaking. I use words not my own. So that is where AAC comes in.

Carolyn Kiel: I see. And how did you find the types of AAC that work best for you?

Kaishawna: Finding the right AAC was a bit hard because I was looking for ones that helped to express my deepest thoughts forthright. The one I am in use of now is called Speech Assistant. It is a free app on iOS, and I started using it in 2021 on Twitter. Unsurprisingly, I feel typing apps works best because they allow me to express my thoughts. Picture apps are still new to me because the grids can be challenging to navigate.

Carolyn Kiel: Yeah, there’s a lot of different options out there, so that’s good that you found one that works well for you. Are there certain situations where you use one form of communication over another? So like, you know, spoken words, AAC, sign language, things like that?

Kaishawna: AAC helps with deeper thoughts, while spoken speech allows me to get basic needs met. Sign language allows for me to utilize any missing thoughts or needs met. AAC is still new for me, yet I would prefer the use of AAC in most situations.

Carolyn Kiel: What have your experiences been like using AAC to communicate with other people?

Kaishawna: Using AAC was something I never thought was for me, as I grew up using spoken speech. I first used AAC with my grandmother during a dentist appointment. She did not have any ill views towards it. Sure, she was surprised, yet she accepted it.

In regards to using AAC with strangers, I used it in my previous education course as part of a presentation for a group project. Some people were surprised since I mainly use unreliable spoken mouth words. Even using it now, I feel as though I am faking because I was always taught that spoken words are much more successful than other means of communication.

Carolyn Kiel: Yeah, there is definitely a bias towards spoken words and mouth words and trying to get people to speak. But I’m glad that AAC is something that’s helpful for you.

You know, in addition, you are also a musician. I know you post a lot of, you know, things about music on your social media. So tell me about that, like what kind of music or instruments do you like to play?

Kaishawna: Oh man, you’ve started my happy thoughts with this discourse of musicality. I have been a musician for most of my life. Music theory is a cherished and sacred space of analytic process I hold dear to my soul. Music itself has given me so much life to where I cannot even think to want to give it up. It is part of my life as much as breathing is.

I mainly play clarinet. I have played since 2013, giving myself a total 11 years to make a musical instrument sing. I primarily play classical pieces, such as the piece I am working on by Carl Maria von Weber. It is called Rondo Allegro Movement 3 in F Minor. This piece is quite challenging, yet I am working on it and building my confidence.

Carolyn Kiel: That’s really great. I’m a musician as well. I used to play alto saxophone. It’s been a very long time since I played. And I’m a singer as well, so I definitely have that deep appreciation for music and music theory as well, which is incredibly analytical, music theory and music harmony. So, there’s a lot of joy in that as well.

And since you are a Deaf, Autistic musician, which has gotta be a very unique experience as a musician, how do you experience music while you’re playing it?

Kaishawna: Music theory is something that allows me to communicate and connect with those who share my experiences. To answer your aforementioned statement, I play clarinet based on vibrations. This is so I can be able to interpret what I am playing, how I am playing, in what new ways I can experience certain pieces.

There is this one orchestral excerpt from Beethoven’s Eighth Movement. It has intertwined melodies and harmonies that build unforeseen bridges as one plays. I am currently playing this one. I experience most pieces through synesthesia. My musical synesthesia is more emotional connected, and thus as color coded based on the specific chord or melody or harmony.

The vibrations allows me to keep in time with the rhythm and also keep up with the other sections. I mostly listen to the pieces on repeat, then memorize that and apply it to my playing.

Carolyn Kiel: Wow, that’s so fascinating. And in addition to that, you also do disability rights advocacy. So tell me about that. Tell me about your disability rights advocacy.

Kaishawna: My disability rights advocacy began long ago, when I was a teenager. I was struggling emotionally, mentally, and psychologically. I was definitely experiencing severe identity crisis. It was hard because many were telling me I was autistic, then they would say I was not. Having that happen, I knew I had to explore more. I soon realized I was autistic, when I was diagnosed at the age of 20. I was very shocked because I felt I was pursuing the diagnosis just because of what others were saying. I knew I had find out for myself.

The disability advocacy was not without flaws. I struggled to get along with others, especially parents, because I listened to what others were saying. I soon started to listen to myself and found my way through being involved with autistic led groups. Then that led to me conversing with parents and even educators. I learned a lot about what it meant to be not just an autistic person, but a Black, autistic, Deaf person. To this day, I still struggle with identity and being a Black, autistic, queer person, yet I have friends who back me up and help me to be myself day by day.

Carolyn Kiel: Yeah, it makes a big difference being in spaces with other autistic people, and especially other Black, autistic, Deaf and queer people, and I imagine it can be difficult to find that community, whether you’re looking online or in the offline world. Like how have you found the most community of other autistic people? Has it been hard to find people to really relate with you? Or how have you gone about doing that?

Kaishawna: Even in 2023, it is hard to find a community that fits me, simply because the majority of spaces are white. There are sadly many underrepresented groups of autistics out there who have yet to have their stories told. I find it hard to fit in with most autistic led groups simply because I don’t see myself in those groups. So I have decided to form my own groups online, such as Discord, Twitter, Facebook, and others. I try not to blame individual people for that, yet I cannot ignore the immense loneliness I feel each time I step into a certain space, whether that be online or in person. In person is definitely harder since the virus is still lurking around, yet I remain thankful for the small interactions I do have in terms of finding a community that fits me.

Carolyn Kiel: Yeah, I’m glad that you’re continuing to look and look for community and form your own. That’s how a lot of these really good communities get started, is someone sees a need and, and creates it on their own. So, yeah. Yeah. Thank you for sharing that.

And you know, in addition to being a musician and an advocate for disability rights, you are also in college now and you’re studying to become a teacher. So what kind of teaching do you wanna do?

Kaishawna: The type of teaching I find myself wanting to do is to teach students their rights and bodily autonomy. I was a part of the special education classes in my schooling days. There were many thing I did not approve of, such as the use of behaviorism. This still impacts the way I view education overall. As someone who is studying to become an educator, I fear I will become like some teachers who do not have patience with those who need it.

My overall teaching will be something that many have not thought of. I want to change the way disabled, autistic, and neurodivergent students are viewed not just in education but in society as well. My thoughts as someone who has severe sensory sensitivities to most things, I fear I will not be able to honor the students I teach.

I do think of ways to cope with that so I can honor and respect the students as they are, for who they are.

Carolyn Kiel: Yeah, it’s important for neurodivergent and disabled children to have the same educational opportunities as all other children, and I think it’s great that you are already tuned into and aware of a lot of these really important issues with teaching and that that can, I think, ultimately really help improve and provide great experiences for neurodivergent and disabled children as they go through the educational system, if they have a teacher like you who understands what they’re going through and can help them get that education that they need.

Kaishawna: My wish is for society to fully acknowledge the needs of those who do not experience the world the same way as they do. I want to see society building roads towards communities instead of burning them. Too many times I see wars online break out simply because of a slight disagreement. I was one of those individuals. I regret any ill will I had towards anyone I interacted with.

I now view things with an open mindset because it can provide me insight to other people’s perspectives. I want to see society do better by those who experience the world in a way that many do not. Society should and needs to honor the harsh roads that many walk, and choose to walk alongside them.

Carolyn Kiel: Absolutely. Yeah. And that’s why it’s also so important for people from all different walks of life to share their experiences so that we can hear those voices. And it goes back to what you were saying before, is that a lot of the, at least in the autistic community or online autistic community, certainly a lot of those voices are white, and there’s not as many voices from other people with other identities and from other backgrounds. So it’s important to hear those stories. Is there anything additional that you wanted to, to add to that?

Kaishawna: I am living a life in ways that most non-Black folks do not live, nor have to think about. When I am walking into a store or when I am simply walking down the street, I have adjust every nerve within my soul as to present myself in a way that is non-threatening. My skin I wear daily poses a threat to outsiders who do not wear the skin that I do. I cannot take this skin off even if I wanted to. This is the skin I was chosen to wear, and I try to wear it proudly. Yet I cannot do that when the very breath I breathe is seen as loud, annoying, even threatening. I have think differently around others in case my thoughts choose to come forthwith without any warning. I have to walk, talk a different way so that I can live another day. This body with, with its flaws. Yet those flaws are often seen as off putting to many. This is why when I code switch, I am not doing it for the sake of someone else. I am doing it so I can survive.

Carolyn Kiel: Yeah. It’s protection. It’s, it’s the code switching and the masking as well that it sounds like you have to do. And that’s a huge challenge that people really need to be aware, aware of Black autistic people’s experiences, that this is what they deal with day in and day out so much.

Kaishawna: Code switching and masking are not the same thing. It is two separate things. To do both is extremely exhausting. Yet if I don’t do it, I risk my life being ended.

Carolyn Kiel: It’s, it’s serious. Yeah, again, really important for people to understand what code switching is, what masking is, autistic masking is, and the huge impact and the importance that it has for Black people and other people of color who are autistic or neurodivergent.

Kaishawna: While this has gotten dark, I wish to end this on a more happy note. I am working on two novels, which includes two disabled main characters. One is my 24th story called Life’s Moments. This story features the tale of a married couple, one autistic and Black, the other person is not autistic. This story is more autobiographical than fiction because it includes very raw situations I have lived through, hence the title.

The other story is my 25th story titled Beneath the Surface. This story is based on some lived experiences, yet this story is more fictional. This one includes a developmentally disabled adult who lives with family and is exploring independence.

Carolyn Kiel: That’s really cool! Oh, that’s awesome that you’re writing books! Do you know when you might be publishing them or are you still in the process of writing them?

Kaishawna: I have gone through many, many drafts with both stories, so the thought of publication is not near. I have hopes to turn them into films so people can enjoy them on the big screen as well. For now, I am working on my 16th draft of Life’s Moments. I have been working on this story since 2018, giving me a total of six years with this masterpiece.

Carolyn Kiel: Wow. Well, I’m glad I’m following you online because I really wanna read those stories when they’re out and it would be great to see them on film. It sounds like those stories will translate so well to film. That’s awesome.

And speaking of that, Kaishawna, where can people follow you if they want to learn about your advocacy or your music, your writing, anything about you?

Kaishawna: I am on Twitter, Instagram, Facebook, and YouTube. I am focusing on my studies more and then working intertwine both advocacy and my studies to make a more inclusive world for both current and future generations.

Carolyn Kiel: That’s great. I’ll put links to your social media in the show notes of the podcast so that if people wanna follow you, they can find you easily that way too.

Yeah. Kaishawna, thank you so much for being on my podcast. As we close out, is there anything else that you’d like our listeners to know or anything that they can help or support you with?

Kaishawna: It was very great to have me here. For those listening and watching, I will say this. View yourself and how you walk throughout this unforgivable world we call home. Do not make baseless assumptions, especially if you do not know someone. Do not believe the stereotypical view of disability because most are wrong and they’re not from actual disabled people.

If someone refuses help, do not shout or get upset. Acknowledge the person as they are and understand that they are not coming from a place of malice. For parents and educators, work with non-disabled students on respecting disability and the right to bodily autonomy. For all, understand someone through not the surface level mindset you have. View them as a friend, colleague, partner, even. Allow people the right to the choices they make and work to make this world a better, more inclusive space for everyone.

Carolyn Kiel: Very important words to end on and a great call to action for anyone listening to the podcast today.

Yeah, thank you, Kaishawna. It was great talking with you today. Thanks for being on the show.

Kaishawna: Thank you.

Carolyn Kiel: Thanks for listening to Beyond 6 Seconds. Please help me spread the word about this podcast. Share it with a friend. Give it a shout out on your social media, or write a review on Apple Podcasts or your favorite podcast player. You can find all of my episodes and sign up for my free newsletter at beyond6seconds.net. Until next time!