Hello, I’m a sibling and I’m here too!
Written by Lydia Safford; Read the original Cure Rare Disease post here.
When we see a family affected by disability, we usually notice the person who has a disability first. Many times in that family, there is a sibling of the one affected by disability. The thought of what a sibling goes through is a thought that rarely comes to mind. Countless times, I myself, have felt isolated due to people not really seeing me in the shadow of my brothers who have Duchenne Muscular Dystrophy. There are a few themes that come along with this idea. The idea of a glass child, the role the sibling plays in the family, and the lack of recognizing siblings.
I first heard the term “glass child” when I was watching a ted talk by Alicia Arenas titled “Recognizing Glass Children — What It Means to Be a Sibling of a Child with Special Needs.” A glass child is a healthy kid (or adult) who has a brother or sister with a disability or other special needs (drug addiction, criminal activity, chronic illness, etc.)
So why glass?
The way she answers this question in her ted talk puts the experience beautifully into words, “You may think it’s because glass children are fragile and break very easily. But the reality is we are some of the strongest children there are. We have to be in order to survive the things we have survived. We are called glass children because our parents are so consumed with the needs of our brothers and sisters that when they look at us, they look right through us, as if we’re made of glass.” That’s who we are. This is who I am. We are glass children. I am a glass child. Hearing these words for the first time, and even now, I am struck with a strong feeling of being understood and also feeling like I got punched in the gut.
Growing up, my life looked a lot different than that of my peers and I felt it challenging to relate to them. The word “normal” haunted me for so long because I had the perspective that my peers had normal lives and mine was anything but normal. Why should I have to do all of the house chores because my brothers can’t? Why do I have to live with the fact that my brothers will be taken from me? Why do I have to help take care of my brothers when I should simply be a carefree kid? Why do my brothers have to suffer? Why can’t we do normal brother/sister things? All of these questions ran through my mind and for a long time I felt bitter towards my brothers, my mom, my life. How haunting the one word question can be.
Along with taking on greater responsibilities, a sibling can often feel left behind, due to the family dynamic. A sibling can often feel that his or her needs are insignificant compared to those of their brother or sister with a disability. I won’t speak for all siblings, but I am often quiet and deal with everything on my own, because at times, I’ve felt like I had to and it has become a pattern of mine. We know that our parents aren’t intentionally forgetting about us, in fact, we understand that our sibling with a disability needs more of the attention and rightfully so. Despite this, my mom has intentionally made sure I don’t feel alone or left behind by creating our time together. In feeling left behind, I would say outside voices contribute to it more than my own family. When someone asks how my brothers are doing and completely forgets to ask how I’m doing, my mom says something. I know not everyone has that experience. I’m grateful for it. I have grown through this pain and even though at times it’s still there, I am in a much better place. A place of acceptance and love for my life circumstances in spite of how challenging they are.
In addition to the struggles of being a sibling, there is such beauty in it. To be able to know someone who has a disability is a joy. If I didn’t grow up so close with disability, I wouldn’t have a spirit of wanting to be around people who are different than me, seeing the needs of others, having the idea that all people are created equally deeply ingrained in me, wanting to fight for the basic human rights of all, and being aware of how fragile life is. The most impactful takeaway is the passion I have for the disability community that I know I wouldn’t have if I didn’t grow up around disability.
My name is Lydia, I have two brothers with Duchenne Muscular Dystrophy and I am a glass child.
To learn more about the Cure Rare Disease mission, visit cureraredisease.org
Lydia Safford attends Biola University in La Mirada, California as a theatre major. She hopes to go to graduate school for special education once finished with her undergraduate degree. Her goal for the future, in addition to working as a theatre professional, is to start a theatre company for those affected by disability. She has two brothers Ben (22) and Sam (21) with Duchenne Muscular Dystrophy. She is also a carrier of DMD. Being a sibling herself, she believes that siblings are often forgotten about in the conversation and believes they bring an important perspective to the table. She believes there is strength to be found in the community surrounding DMD.
Originally published at https://cureraredisease.org on January 24, 2020.