About Sibs’ Journey

Sibs’ Journey is a project founded by three young women on a mission to broaden the narrative of the sib experience. “Sibs” are the siblings of individuals with disabilities and at Sibs’ Journey we want to share stories, experiences, and resources to help sibs navigate through these complex relationships.



We are Claire, Renee, and Ellie and we are determined to broaden the narrative for the sib community. Get to know us better here.


In the summer of 2013, the Sibs’ Journey team drove over 10,000 miles around the United States and interviewed almost 100 sibs of all ages about their experiences growing up with a sibling with a disability. The project took almost two months and the team interviewed sibs between the ages of 4 and 84 in 27 different states.


On the Sibs’ Journey summer road trip, we learned that Sibs long for a safe space to share their experiences but even more than that, they want more information – information about services and opportunities for their siblings as well as advice on how to navigate the system both with the help of their parents and independently.

We found that college-aged sibs are underserved and need extra support, as most are in a transitionary period in their lives. Most have never spent significant time away from their sibling and are beginning to feel more responsible for their sibling’s care and wellbeing.

We will leverage our experience and resources to put on a conference for college-aged sibs (18-30) to address these specific gaps. Our goal is to help sibs learn about resources, ranging from medical to legal to personal, and to explore the possibility of starting a national movement of young adult sibs. We believe that siblings our age have tremendous power to advocate for quality services for their siblings in the midst of budget cuts and shrinkages. Ultimately, we hope to create a community of sibs that can learn from and rely on one another.



8 thoughts on “About Sibs’ Journey

  1. I’m really looking forward to this interview. I do not know too many other sibs, and I don’t really get the chance to talk about it. But Ellie, your story sounds so much like mine, I almost feel like I wrote it, so I look forward to being a part of your experience! See you in North Jersey 🙂

  2. Looking forward to hearing about your journey(s). You sound like intelligent, thoughtful, caring, determined women and I am glad to know about the project. I hope to run into you here in Chicago. Best of luck and drive safe!

  3. You will be in my prayers as you embark on this incredible journey. I hope you learn about yourself, each other, your interviewees, and their families and they are able to learn from you, as well. You have been given an amazing opportunity and it sounds like you will be forever grateful.

  4. You guys are awesome! Just by reading the stories you have so far, I can already tell that the insight your narratives will provide to sib relationships will be invaluable. Karen’s story really moved me. The video aspect of the interview added a lot of depth and understanding to her story. Keep it up ladies!

  5. Stop by Sacramento. I will tell you what it is like to care for a developmentally disabled brother. I can give you specific examples of how difficult it is to get basic services from county IHSS organizations. I can also talk about how it is very difficult for me to go anywhere or do anything because of the need to stay home and make sure my brother doesn’t get seriously hurt (he can’t anticipate what activities are dangerous, and he is active/curious). Eric Nelson (enelson.0000 at gmail)

  6. i cant wait to see you guys on Monday at the Family Resource Network in NY, its gonna be a lot of fun, getting to meet other siblings with some of the same experiences at me. hope you are just as excited as i am! see you then 🙂

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