This week, TMA Co-Founder Sunny and Annapolis Music Therapy Intern Ritchie sat down to discuss the creation of The Musical Autist, as well as person-first versus identity-first language! Check out their transcript below.
Ritchie: Hi Sunny! I was hoping to start off our interview by just getting to know a little bit about you. Could you tell me about yourself?
Sunny: So, I was born blind. I was diagnosed with autism at age 13. I play the piano and I sing. I have an amazing gift, called perfect pitch. I graduated from Maryland School for the Blind in 2007, at age 21. I was placed in a shelter workshop for 8 years and left the workshop in 2015. During my time in the workshop, I met CJ Shiloh, who is my co-founder of The Musical Autist. I met her in 2011, and she asked me to serve on her board.
R: Nice! So, did you and CJ know right away that you wanted to co-found something together? How did you build your relationship?
S: Well, I performed at her third Sensory Friendly Concert with a mutual friend of ours, and CJ had asked me to serve on her board because she was specifically looking for a person on the autism spectrum to serve. So, before the concert, I had called her and she asked me if I knew anything about autism or was familiar with autism. I said “I am Autistic,” and she got really excited because she was specifically looking for someone to serve on the board. So we co-founded The Musical Autist in 2011, and here it is 9 years later! April 1st is our 9-year anniversary! I also serve on two other non-profit organizations. I serve on the Maryland Developmental Disabilities Council and I serve on the Self-Directed Advocacy Network board.
R: I think that it’ll actually be great for me to talk with you about the neurodiversity movement and language, such as person-first versus identity-first. I was wondering what are some of your beliefs and ideas regarding the neurodiversity movement?
S: Well, number one, I am a big believer in the neurodiversity movement. I believe that autism is not a disease that needs to be cured. I believe that autistic people should be accepted as they are. Now, on the topic of person-first language, I kinda had a little slip up there and almost said “person with autism.” A lot of autistic people get offended when you refer to them as a “person with autism,” because you’re basically trying to separate autism from the person, and autism is something that you can’t extract from a person like you can with typical diseases like cancer, diabetes, and all those things. Autism is a part of a person and part of their identity. People on the autism spectrum would prefer to be addressed as an autistic person. It’s the same thing for me, you know I’m blind. You wouldn’t refer to me as “a person with blindness,” you would refer to me as a “blind person.” So, my strong advice is to just ask the person how they want to be addressed or referred to.
S: CJ and I have a default phrase, “a person on the autism spectrum,” but my advice is to just ask the person how they want to be addressed.
R: Right, it seems so individualized. I’m wondering, if someone happens to not ask and refers to someone who prefers identity-first through person-first language, do you have any advice for how to apologize and recover from that?
S: Well, I would say just ask.
R: So tackle the preference before even having the conversation.
S: Before even having the conversation, yeah.
R: Alright, that makes complete sense! So you’ve been talking a lot about CJ, the co-founder of The Musical Autist. What drove you to find TMA and combine your passions for music and advocacy?
S: Well, I was diagnosed with autism at age 13 and during my last few years at Maryland School for the Blind, I learned a lot about autism. I learned about all of the challenges that autistic people face, like sensory processing problems. I learned about Temple Grandin – I actually met Temple Grandin three different times in my life.
R: What!? That’s awesome!
S: I think Temple Grandin was really the one who motivated me to start advocating. Actually, when I was at Maryland School for the Blind (MSB) during my last several years there, I wrote a one-page article in the MSB news about autism; basically advocating for autistic people. When I was in school, I never even heard the term “neurodiversity.” By the time I met CJ, I’d heard the term but I didn’t know exactly what it meant, so we really learned a lot more about autism and the rights that Aautistic people have. When I wrote these articles at school, I think my main purpose was to educate the MSB staff who had to work with their students better. I think it was more of an elementary level of advocacy work.
R: Yeah. Could you say that it felt almost natural or right to co-found this with CJ; to combine your new information about sensory input, individual wants and needs, and different advocacy opportunities in order to co-found The Musical Autist?
S: I guess I did.
R: It kind of sounds like that, which is really cool. You got to take multiple things you were really passionate about and combine them into one big passion project with a good friend.
R: That’s great! So, speaking of things you’ve learned, I heard you’re taking a college class! I was wondering what class you’re taking and if it’s helping you as a self-advocate or as you work towards your goals in the near future.
S: So, my dream job is to be a paid musician and a paid public speaker. I am taking an intro to entrepreneurship class and planning to get a certificate in entrepreneurship because I, eventually, want to start my own business. In this class, my focus is on music right now. I would say this class has helped me become a better co-founder for The Musical Autist because, like CJ was saying, and to also help me market my services for performances. This entrepreneurship class is helping me learn about the basic business model. Right now, our classes are online because of everything that’s going on. When classes start back up, I’m learning about how to write a business plan and design thinking. I had a couple of assignments that were due and I’ve been doing really well in class. This has really helped me break ground as to how to start my music business. As far as advocacy is concerned, I would say that I’m not sure where to go. My focus in this college course is on the musical aspect of my business.
R: Gotcha! So, the advocacy part may be another class or just information and experiencing you gain as you move throughout life?
R: Cool! I think that’s great. So Sunny, you play piano! Do you mainly play classical or do you dabble in other areas such as jazz or maybe newer genres?
S: I play a lot of genres: classical music, 1980s music, church music… I definitely can expand my genres of music. WHen I play for nursing homes, I’d like to learn some older songs.
R: Maybe some 50s and 60s tunes?
R: That’s awesome! Even though you already are a great musician and strong self-advocate, it sounds like you’re pushing yourself every day to become an individual paid musician and public speaker in order to share your knowledge and experiences with others.
S: That is my plan!
R: That sounds great, Sunny! Do you have any advice for others who may want to start taking classes in order to be more knowledgeable about the things they’re passionate towards?
S: I would say: Whatever your heart desires, follow your heart. If you think that taking a class would be helpful to sharpen your skills, just go for it.
R: Beautiful! Thank you, Sunny! It was great to get to talk with you. Is there anything else you’d like to add before we wrap up?
S: I think I’m good!
R: Alright! Well thanks again, Sunny!
S: You’re welcome!