Growing up the sibling of a brother who didn’t speak

My brother, Dustin Ryan Bartz, was born with severe congenital myotonic muscular dystrophy and other complications created from a lack of oxygen reaching his lungs shortly after birth. Dustin would qualify as “non-verbal”. From his birth situation, he had hydrocephalus, or what they call “water on the brain” (which we didn’t technically discover until he was 9 or so).

I was 3 when my brother was born, and over the years we developed many ways to communicate. I learned to read my brother’s body posture to match his moods. I knew hunched shoulders and a pulled back lower lip meant he was afraid. Dustin made noises like grunts and coos and whines. Some of the sounds that come from my 7 month old baby girl remind me of my brother. I learned to interpret those noises and grunts to Dustin’s typical needs and desires and be his voice to communicate with others.

If my brother and I were at one of my softball games and a teammate’s parent wanted to talk to Dustin, I’d often be there to answer questions or help Dustin trust the interaction and enjoy it. Dustin was easy to appreciate; he was cute, friendly, good natured, and happy to have attention. Being one of the caretakers for my brother as his sister, I often got positive attention in being around him when others wanted to meet him. People viewed me in a positive light and appreciated when I would speak with or for my brother.

My brother lived 13 wonderful years and passed away when I was 16. I loved many things about my brother and miss him greatly. But if I am to be completely honest as a sibling, part of what I missed about my brother was how I defined myself by being his sister. I missed the feeling of importance when someone would talk to me in order to talk with him. I missed the instant positive feelings people would have about me when I pushed my brother’s wheelchair. I missed that people would look at me and smile when I was in public with my brother. Without Dustin, I faded in to the crowd much more than I did with him. I wasn’t special on sight to those who would have natural empathy to someone like my brother and his family.Growing up the sibling of a wonderful boy with myotonic muscular dystrophy, a wheelchair, and drool often on his shirt meant people reacted to me a certain way, and that I learned how to interact with people in a certain way.

I write this for a specific audience as the target – siblings of individuals with disability who do not speak or may be considered non-verbal. I guess as a writer I enjoy psychoanalysing myself, and lately I’ve been wondering how having a sibling who did not speak affected my speech abilities and tendencies.

Do I value words more because that was a gift I could give to my brother?

Did I want to invest in my language ability because it proved so valuable as a child?

Do I have more controlling tendencies because I perceived myself at times of having a role to “speak for” my brother?

Is part of the reason I take myself so seriously because as a child I viewed talking as part of my “job”?

I was quiet in school, avoided conversations I considered frivolous, have a really hard time making jokes and generally only liked to talk to my peers if it were “business talk” or about a common interest I already knew we both shared. Was part of that because life seemed so serious with a brother who would likely (and did) have a shorter lifespan than me? Was part of that because I didn’t get to have typical conversations with my sibling? Was it because I felt that adults listened so intently when I spoke around my brother?

I taught AP Language for 6 years, published a book about my family, and use my language skills in my tech job. I love language, love writing. I guess in my life I don’t need to know exactly why that is, but I’m also a military Air Force brat who moved around a lot. I enjoy reading about the psychology of military brat children, relate well to others like me, and I really wonder how much I would have in common in language and speech tendencies with other siblings of individuals who do/did not speak or who might be labeled as non-verbal.

So… if you are a sibling like me, how do you think your sibling experiences have shaped the way you communicate as an adult?

darcy and dustin
How did this boy shape this girl becoming a high school English teacher?

2 thoughts on “Growing up the sibling of a brother who didn’t speak

  1. Oh this is a great article! Very interesting to hear about your experiences with your brother. I’m four years older than my brother. He doesn’t speak and has an intellectual disability.

    I always felt like we just had a connection of sensing each other and words were clumsy and unnecessary at best. I had problems later as a teen with receptive language- probably mostly because the words people said didn’t match with the sense I got from them. E.g ‘we care about you and want to help’ from yet another social worker, really felt like ‘I’m so tired of trying to help recalcitrant adolescents, I hope I can just give her some easy answers and get her out of here,’ Or, ‘call me whenever you want’ really meant ‘I’m hanging up the phone now because I don’t think I can help you any more today. Please only call during business hours and I’ll probably be busy anyway.’

    Sometimes words make me really angry because they contaminate the felt sense of things, and then I don’t know if I’m being tricked by words or if they really mean it. I’m very much an adult now and have lost most of my sharp isolation and suspicion.

    Often I ‘knew’ my brother needed something, but no one would believe me because they couldn’t tell that he needed it. They thought I was just making it up. As adults we’ve become a little more distant and now I don’t always know, he makes incredibly meaningful faces at me and it just bounces right off. I can’t feel what he means and feel light years away. It makes me really sad.

    There is SO much to this topic, so many positive things I’d like to say too.

    Hope you get lots of replies because I’d love to hear more about what it’s like for other people.


    1. I’m 3 years older than my brother. And through most of my k-12 schooling, I was very quiet and reserved. I loved to answer questions in class – because those words had a clear purpose. I really did try to avoid unnecessary words, much like you mentioned.

      I’m sorry words felt empty because of broken promises and empty words. I remember a time or two I had a different way of speaking around a social worker, or even a group the family meant to impress like the Make a Wish foundation.

      I do know that I often find myself more angry about deceit or misuse of words than other things. Lying is one of the things that sets me off the most, something my brother couldn’t have done. I think I get it when you say words “contaminate the felt sense of things”. There are much purer ways to communicate than what much of the culture around us uses (particularly if we want to use examples from the election year).

      I’d love to hear about some of the other things you’d like to say, and maybe more about your brother too. 🙂


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