Disability + Siblings: What the Research Says with Meghan Burke, PhD • 🎙️E22 on Take the Next Step with Amy Julia Becker • Created together with Hope Heals Camp
amyjuliabecker.com/sibling-rela...
3. Siblings need to be seen not as “secondary children,” but as full participants in a family culture of mutual care and reciprocity.
She also pointed out that sibling relationships can be complicated. It matters that we, as parents, make space for that complexity rather than trying to simplify it.
Do you have a child with a disability? Here are three things that researcher Meghan Burke says siblings need:
1. Siblings need connection with other siblings who share this experience.
2. Siblings need honest conversations earlier, especially in adolescence, about the future.
Hand holding a bright yellow hardcover book titled That’s Not How It Happened by Craig Thomas, featuring an illustration of four people in a torn photo on the cover, with bookshelves blurred in the background.
I loved That’s Not How It Happened, a novel about a family of four, including an adult son with Down syndrome. Thomas writes from the perspective of each of his four main characters & asks questions about how we represent people with disabilities in the media, the idea of savior narratives, and more
"I worry that by only having the glass child metaphor to describe experiences like mine, we give in to the ableist assumption that our disabled siblings are catastrophes, instead of people who ultimately enrich our lives.”
-Brian Trapp
www.wbur.org/cognoscenti/...
“Sometimes I had to be my brother’s arms, legs, eyes and voice. It often didn’t feel like a burden, more like an alternative way of moving through the world. 1/
Disability + Siblings: What the Research Says with Meghan Burke, PhD • 🎙️E22 on Take the Next Step with Amy Julia Becker • Created together with Hope Heals Camp
amyjuliabecker.com/sibling-rela...
How can parents foster family relationships rooted in mutual care, where siblings don’t simply see a brother or sister with a disability as someone to help, but also as someone they need in their own lives? Researcher Meghan Burke helps me answer this question! 👇🏻
Reciprocity doesn’t mean giving the same things in the same way; it means recognizing that each person contributes differently at different times. 2/2
amyjuliabecker.com/sibling-rela...
Family relationships thrive when siblings learn to see care as mutual rather than one-sided. A sibling with a disability may need practical support like tying shoes, and they in turn may meet their siblings' needs through patience, perspective, joy, connection, or emotional support. 1/
There is real hardship associated with disability in families, and every member, including siblings, can feel it. But there is also real joy and love and hope and peace.
What may feel dramatically different for parents is often just the normal, formative experience of sibling life. 2/2 amyjuliabecker.com/sibling-rela...
A sibling once said to me, “Amy Julia, for you [as a parent], there was a before and after in your life. There was no before and after for me.” She had always known her brother with Down syndrome exactly as he was. Disability wasn't something disruptive, but part of the fabric of her family life. 1/
I’ve wondered whether Penny’s needs might harm her siblings, or whether Marilee and William feel overlooked because of the attention those needs require. What I’ve learned tells a more complex, and more hopeful, story about siblings growing up alongside disability…
open.substack.com/pub/amyjulia...
Is having a sibling with a disability hard on kids? Researcher Meghan Burke has spent years studying (and living) this question. Her findings might surprise you.
amyjuliabecker.com/sibling-rela...
After Diagnosis: Grief Isn’t the End of the Story with Dr. Curt Thompson • 🎙️E21 on Take the Next Step with Amy Julia Becker • Created together with Hope Heals Camp
amyjuliabecker.com/grief-disabi...
In a world that is often fraught and broken, grief is a natural first response to any rupture. Rather than ignoring or minimizing what hurts, it is important to name it. Even small wounds can accumulate if left unacknowledged.
What does it look like to love one another in the midst of all the ways we harm one another? This conversation between Krista Tippett and Shai Held gave me so much to think about. onbeing.org/programs/sha...
This life of constraints and missed opportunities is the life I have been given, is the life for which I am incredibly grateful. Maybe I needed to acknowledge and grieve the losses in order to be able to see and receive all that I have been given.
After Diagnosis: Grief Isn’t the End of the Story with Dr. Curt Thompson • 🎙️E21 on Take the Next Step with Amy Julia Becker • Created together with Hope Heals Camp
amyjuliabecker.com/grief-disabi...
"Life is not lived miles at a time. It’s lived moments at a time."
- Dr. Curt Thompson
The book as a whole is opposed to the Nazi regime, but there’s a more subtle story within it. When we value vulnerable humans, we value our full humanity rather than reducing each of us and all of us to utility. 2/2
I just reread All the Light We Cannot See. It’s a beautiful, harrowing story of love and resilience and beauty. I noticed this time more than the last time I read it that characters with disabilities are portrayed as full humans with great purpose and significance. 1/
After Diagnosis: Grief Isn’t the End of the Story with Dr. Curt Thompson • 🎙️E21 on Take the Next Step with Amy Julia Becker • Created together with Hope Heals Camp
amyjuliabecker.com/grief-disabi...
"It is in the being present in community with my grief that I am enabled to first begin to imagine something beyond my grief."
- Dr. Curt Thompson
No one ever told me that middle age would be marked by regret. I didn’t know I would turn around to look at all the other adventures on offer & find those doors closed. I also didn’t know the strange grief, & surprising gratitude, of the choices that shape a life.
open.substack.com/pub/amyjulia...
As the mom of a daughter with Down syndrome, I've felt my fair share of complicated emotions over these past twenty years. And sometimes, I haven’t known what to do with those emotions, especially the ones that seem negative, like grief or fear. I’m talking today with psychiatrist Curt Thompson.
