Read my interview with Carlie Schoonees on how autism spectrum disorder shapes her music life. She is a South African composer based in Cologne.
Please read my interviews with JĀNIS PETRAŠKEVIČS, CARLIE SCHOONEES, BENJAMIN STAERN, AILÍS NÍ RÍAIN, MARCO DONNARUMMA, and GEORGIA SCOTT in POSITIONEN print version (in German). These interviews are part of my collaboration with Berlin based new music magazine POSITIONEN where as guest editor have focused on topics covering music and disabilities.
What is your disability?
I am diagnosed with autism spectrum disorder (ASD). My main challenges include sensory processing disorder, difficulty with social interaction and communication, chronic fatigue, and comorbid health conditions.
Does your disability impact your creative work? If yes, then how?
Yes, definitely. Being autistic influences every part of my life, especially my personality, sense of humour and the things that interest me, like psychology. Autistic people are known for what is referred to as special interests, which can be defined as unusually intense fascinations with specific topics. Special interests can be lifelong, but for me specifically, it can change often. This comes to my advantage as a composer because I can use my knowledge about my special interests as topics or concepts for new pieces if I think that it makes sense as a piece and would be interesting for an audience.
My sensory differences also influence my creative work. In new music, we often use extended techniques, electronic sounds, lights and other visual stimuli that are very overstimulating and painful for a lot of autistic people. Even though some techniques I use are very uncomfortable for me to listen to, I still use it (sparingly) when I feel it is the best sound to portray what I am trying to communicate to the audience. There are techniques, like bowing on Styrofoam, that I definitely will never use.
Has your disability affected/shaped your music? If so, how, and which work would you say shows this?
Yes, other than my special interests and sensory difficulties, I think my neurodivergence also influences the way I prefer to structure my music. When listening to new music, I often get bored or unfocused really quickly, so I usually prefer to structure my own music in multiple short movements to keep it interesting. This obviously also depends on the concept. My pieces, “Hey, I like your personality.” “Thanks, it’s a disorder.” (2020), residue (2021), and A Dental Drama (2023) are all multimovement works that focus on gestures.
My sense of humour, which I have been told is a bit weird multiple times throughout my life, is also visible in “Hey, I like your personality.” “Thanks, it’s a disorder.” and A Dental Drama. In the latter, a piece for 8 musicians, video and tape, I focused on the absurd things you can do with toothbrushes and toothbrushing, like brushing teeth together in a group or playing instrumental techniques on your face with a toothbrush.
In absorbed (2022), for amplified horn, percussion, piano, and tape, I attempt to demonstrate how it feels to me as an autistic person with sensory processing disorder when I absorb a lot of complex sounds into my brain until it causes sensory overload, severe pain and distress.
In what way has your disability shaped your career?
I definitely compose slower than most other composers. Working with people is also often very difficult for me and it can take me days or even weeks to physically and mentally recover after rehearsals or concerts. Autistic people communicate differently than neurotypical people. Therefore, I constantly need to adapt the way I communicate, especially in rehearsals where time is of the essence and instructions need to be extremely clear. This means that I have to prepare and mentally script what exactly I need to say before rehearsals, which is very time and energy consuming. During rehearsals, I always feel that I need to hide my autism because people might think that I am not being professional if, for example, I struggle to communicate something, do not make a lot of eye contact or get overwhelmed. All of this means that I do less projects than other composers.
How do you imagine a more accessible musical world? What else comes to your mind when thinking about accessibility?
The key to accessibility is understanding. People need to educate themselves about disability and ableism (the discrimination or prejudice against people with disabilities). Find sources written by disabled people themselves to learn about their personal, authentic experiences, like from disabled activists on YouTube, Instagram or in blogs. Most of the conversations about inclusivity I see, in general and in the arts, do not include disabled people and this needs to change. Creating a safe environment by treating people with respect, can help that disabled people who do not publicly share their diagnoses to feel comfortable enough to ask for accommodations or assistance. Not all disabled people feel comfortable with disclosing their disability and not all disabilities are visible.
In new music specifically, I have seen content warnings in Germany for pieces that include strobe lights, flashes or extremely loud sounds. This information needs to be included in advertisements and posters of concerts already, not only on the door of the concert hall when you are there and already have a ticket. Some concerts provide earplugs in situations like this, which is very helpful. I always have my own earplugs anyway, but I have seen people in concerts judging me for using it. I really don’t care what they think, but some people might and it would be easier for people like me if using earplugs was normalised.
What guidelines could be used for creating musical compositions for musicians who have your disability?
I do not speak for all autistic people, as we are all very different and have different support needs. In general, it is always best to ask the person what they need, but there are some general points that should be considered:
- It is much easier for us if we know what to expect, during rehearsals or if waiting to receive a new piece. Information like who will attend rehearsals, where exactly it will be, what the seating plan is and what to expect of a new composition before receiving the final score can help a lot.
- If you are composing a new piece for an autistic musician, you might need to explain the lighting situation on stage and electronics if applicable, as well as certain extended techniques you plan on using before composing and ask and/or test if the person is comfortable with it. Not all autistic people are hypersensitive to sensory stimuli.
- Communicate information clearly and directly. Do not imply things.
- When making the rehearsal schedule, include the person and ask if they have specific needs for having regular breaks, or if they are able to rehearse on many consecutive days. Stick to this schedule and avoid any last-minute schedule changes as far as possible.
Does new music have a role in making our musical landscape more accessible? What can it be?
Yes, definitely. We need to start a larger conversation and create awareness about accessibility in new music. Including disabled people should be the norm. It is not just a box to tick or something people should do to make them feel good about themselves. Disabled people have very different experiences, which makes it important to consult with as many disabled people as possible. We have to find ways to ensure that children and adults with disabilities have equal access to new music education and concerts where they feel comfortable, respected and welcome.
As a young composer, I have avoided all composition competitions and projects where I know it will be expected of me to speak on stage, answer spontaneous questions about my work in front of an audience or apply with a video of myself. Giving disabled people the option to rather do these things in writing if they wish to, would make competitions and other opportunities more accessible. This is only a small example of something that could easily be changed in educational and professional opportunities.
During the COVID-19 pandemic, there were a lot of live streams of new music concerts. The whole world was isolated and therefore we adapted to include everyone, but after restrictions were lifted, the live streams stopped. Many people with disabilities are unable to attend concerts, due to the unpredictability of their conditions, not having assistants available, venues not being wheelchair accessible, or still needing to isolate because of COVID-19. Live streaming is not the same as being in the concert hall yourself with the room, acoustics, setup of speakers and experience of watching with an audience, but for many disabled people it could be the only way to access it.