Lessons from Organizing Slowly with Siblings of People with Disabilities

I am an old-school organizer — the outsider who knocks on the doors of strangers, creating a sense of urgency so that people will take action in their own communities. I was trained by some of the best neighborhood organizers out there, in the final years of ACORN and in the first generation at the Alliance of Californians for Community Empowerment (ACCE). The outsider-organizer model fed my strengths — getting the work done — while also fulfilling my desire to remain anonymous and unseen. 

Like many organizers who mastered this model, I am white, college-educated, and dedicated much of my waking hours to my political work. And, like many organizers, over the past decade I have been interrogating this outsider-organizer model. The outsider-organizer, not from the community that they are organizing, holds power by nature of their position, though this power is often hidden and unacknowledged. We talk to all of the members about the issues, tactics, strategies, interpersonal dynamics, and action planning what-ifs — giving us power to influence communities that we are not a part of. The outsider-organizer model is a piece of the white supremacy culture that many of our organizations have upheld, as white organizers shape the agenda in communities of color.

I became an organizer because I have a brother with down syndrome, and, as we both came of age, I saw the lack of available support services for him. Believing in the interconnectedness of all of our issues, I worked at multi-issue organizations. Year after year, we organized for money for all kinds of social services in our city and state budgets, but our organizing never prevented the steep cuts to services for disabled people. As an outsider-organizer, it wasn’t my place to raise my own self-interest in fighting for disability services — meaning that my own organizing work did not deliver on what I most needed. 

A year and a half ago, I attended the Sibling Leadership Network’s convention, which is one of the only gatherings of siblings of people with disabilities. Through the conference, I found a group of people who shared an anti-ableist viewpoint and a desire for a community to put our shared needs into action. At the end of the conference, we spent an afternoon dreaming together over lunch in a cafe.  When I decided to start the Sibling Transformation Project, that group became our organizing committee. 

Most of us have siblings with intellectual and/or developmental disabilities (like down syndrome or autism) who have a whole range of support needs. Some of them also have physical, mental health, or other disabilities, and some of us also have disabilities. Our goal is to create community among siblings of people with disabilities, develop anti-ableist political education, and learn about how to create changes in our own lives, the lives of our families, and our communities, following the leadership of the Disability Justice movement. We have met at least once per month over Zoom, creating the website, developing a curriculum, recruiting a leadership development cohort of siblings of people with disabilities, and fundraising to pay for coaching, facilitation, guest speakers, and the basic infrastructure needed to run the program.

We are now halfway through a six-month leadership development cohort with 18 participants — all of whom are siblings of people with disabilities and half of whom are people of color (which, unfortunately, is unusual in most disability family-based spaces). We are moving slowly together, centering deep relationships and personal and collective transformation. At the heart of our work is deepening our understanding of how ableism, along with white supremacy, patriarchy, and homophobia, shaped our experiences in our families. 

We meet monthly for four-hour long retreats on Zoom. In the retreats, we do specific anti-ableist political education sessions, engage in a modified circle process to share our experiences with the content we are learning about, and learn community organizing skills — the same nuts and bolts organizing skills that I have always used. In between, we have webinars in which we explore a topic in depth, including Sex and Dating in the Disability Community, Guardianship and Civic Engagement, How our Sibling Experience Impacts Our Relationships, Housing for People with Disabilities, and Grief with our Siblings. Additionally, each participant receives coaching (from a sibling) and engages in peer check-ins to discuss what they are learning.     

In many ways, this group serves as a caucus space for an unusual, but particularly potent, identity that we share. Seeing our stories reflected in one another gives us the safety to investigate how we’ve been shaped by ableism, identify patterns in ourselves, our families, and our communities, and begin to see what transformation might be possible.  

This deep political education is slow work, but I believe it will lead us to take powerful actions for liberation. Some of our disabled siblings voted independently for the first time this year because of courageous conversations we had in our families. Some of our cohort members have stepped into advocating for the support needs of their siblings, attending their Individual Planning Meetings or asking their sibling’s staff to make changes to how they are providing support. These small steps of claiming agency are teaching us what it feels like to know our own voices — and to use them to create change. My hope is that, as the participants in this cohort find their voices in their families, it will expand their vision for what is possible and lead to more empowered and effective advocacy for policy changes. 

This is a really different model of organizing for me – and there are moments when it is uncomfortable. White supremacy culture has shaped a strong sense of urgency in me, and I find it most challenging to continue to give myself permission to allow this slow way of organizing to move forward. We haven’t launched a campaign yet. We haven’t done any actions. We haven’t even picked an issue (though we’ve been talking about it). In the coming months, as this cohort finishes, we plan to begin more outward-facing campaign work — bringing together members of this cohort, other siblings of people with disabilities, some of our disabled siblings, and some of the other people in our family systems. We know we want to choose campaign work where we can follow leaders in the Disability Justice movement and where we can advocate for the kinds of services that will make our families’ lives better. I am sitting with the discomfort of not knowing, trusting that we will get there and that, when we do, we will be ready. 

But the most uncomfortable part is being seen. In my family growing up, my brother’s struggles and accomplishments were centered, and I did my best to stay out of the way, stay out of trouble, and accomplish all the things I was supposed to. It turns out, lots of siblings of people with disabilities have a similar experience — it is a part of how we internalized ableism, trying to prove our worth by being competent and not demanding attention. While I love seeing myself in others as we share stories, talking about myself — even writing this piece — is challenging. I’m afraid of taking up too much space or taking space that someone else needs. 

But I’m learning that when I take up space — authentically bringing all of who I am to my organizing work — something else is possible. I’m not concealing my own power. I am able to own my own leadership while facilitating the leadership development of everyone around me. I don’t have to hide anything about who I am, and, in bringing all of myself, I feel whole, energized. This work will be sustainable for me for the long haul. 

The model is emergent, and I do not know what it will yield, but I am excited for what is happening and how it feels. My training would lead me to put myself in the background of this piece, to share something written from a collective voice about what we’ve achieved and where we’re going, but I am learning to share the process without the result, in my voice, with my own story. 

You can reach the author at Claire@siblingtransformation.org.