The importance of the “sibling voice”

Written by Isabella Globe, Family Engagement Team summer student

Despite being born into it, I have never had a clear definition of what is entailed in the ‘role’ of being a sibling to someone with a disability. It is different for everyone. It is an unspoken understanding that silently works to create the family dynamic.  

My brother, Lucas, is one year older than me and was diagnosed with cerebral palsy at birth. As the younger sibling, this has always been my “normal” and will forever be a part of my life.  

I often get asked by caregivers if I feel burdened or bitterness, and my honest answer is no. I would be lying if I said every day was easy and I have never struggled, but I don’t know my life to be any other way. I have always found it difficult to find my place as a sibling, as I am not a caregiver, yet I am directly involved in my brother’s life and affected by everything that comes with it. However, I hesitate to relate to caregivers, as I simply cannot share their experiences or resources in a comparable way. 

Through my experience, I have always found that siblings are often a forgotten piece of the family and do not get recognition as often as they should. I believe that, especially as children, we can be overlooked and seen as naive and unaware of the weight that certain decisions and events may have, but this is not true. All siblings in these circumstances each have unique perspectives that allow for a deeper understanding from everyone. When I was a child, I remember offering suggestions to my brother’s care staff, and I received no acknowledgment. Lucas is nonverbal, so advocating for him has always been a large part of his life. My insight on my brother’s cues and ability to offer valuable tips to help manage situations that I had been experiencing firsthand my whole life was taken for granted. In many cases, I am the person there when my parents cannot be.  

Siblings fit into a variety of roles, such as advocates, friends, support, role models and more. The “sibling voice” is scarce and extremely important. Through my summer position at Grandview Kids, I found this opportunity to share the need for the voice of siblings with lived experience. It has made me stronger, empathic, resilient and understanding of what others experience. I have been able to share my story and aid others by speaking directly about how I watched my family navigate to where we are today. By gaining the sibling perspective, a more complete picture of each family can be achieved.  

For caregivers, my hope is that you will gain appreciation and understanding for siblings. We know more than you may think and can often offer valuable insight. Most importantly, I want siblings to know that there are others in their shoes and that their input, feelings, and experiences are all valid.