Lives-in-Progress
Building a National Disability Collective
For us, self-direction is not a quality of life issue. For many of our brothers and sisters, it can be a matter of life or death. Someone might say the Collective is too ambitious, but we disagree. Our motivation is great. We are already well-connected and have a proven track record. In order to create the real transformative change necessary, we need to improve as many lives as possible in the shortest amount of time.
SELF-DIRECTION IS FREEDOM
We all yearn to be an essential part of something bigger than ourselves. We all want the freedom to pattern our own lives. For those of us with disabilities that freedom is called self- direction. By definition, self-direction needs to be collectively—not just individually—led by people with disabilities. Thirty years after the passage of the ADA, the disability community has the diverse, national leadership needed to make this a reality.
People often tell us the Lives-in-Progress Collective is too ambitious, but for people with disabilities and our fresh-thinking allies, it’s essential. The Collective will enable people with disabilities to be visible, essential members of their local communities, building a national collective with one another and defining what’s possible in our own lives.
UNIQUE AND DISRUPTIVE
Unique and disruptive, the Lives-in-Progress Collective will:
- Be led by the dis/Abled, particularly the multiply marginalized and alternatively communicating, while collaborating with nondisabled allies from other organizations.
- Create a national collective of leaders with disabilities focused on transforming self-direction.
- Pay dis/Abled people for their expertise and lived experience.
- Offer multiple pathways and perspectives based on real lived experience.
- Provide a free, accessible, online national map of diverse, documented paths to meaningful, self-directed lives-in-progress that allows people to search for mentors, resources, and practical ideas by location, interests, talents, and vocations.
- Dismantle common communication, financial, and cultural barriers to access.
- Allow for fast, easy access to the various resources, programs, and supports used by others who are self-directing.
- Assist people who want to move out of state for college, employment, +/or other personal reasons.
One in 50 adults with disabilities living in the US currently self-direct and live the lives they imagined. The other 58.8 million deserve the same freedom. In the first year, we expect 1000 people will access the Lives-in-Progress resources and at least 25 will receive direct mentor consultations. If fully funded, in only 3-5 years, the Collective has the potential to impact tens of thousands of people with disabilities, their families, and their communities.
WHY THE ALLIANCE?
The Alliance for Citizen Directed Supports will staff, host, maintain, and promote the Lives-in-Progress Collective. The Alliance was founded in 2016 to support people with disabilities to create life journeys of their own making. Led by a diverse 10-person board of directors, 6 of whom identify as disabled, we aim to disrupt the status quo regarding the life-outcomes of the dis/Abled
The Alliance board members and staff already have direct working relationships with groups such as,
- NCIL
- AWN
- ADAPT
- National Disability Leadership Alliance (NDLA)
- AHEAD
- AUCD
- Partnership for Inclusive Disaster Strategies
- National Center on Advancing Person-Centered Practices (NCAPPS)
- Participant-Directed Supports at Temple University
- Applied Self Direction
- ISAAC
- TASH
- SinsInvalid
- CommunicationFIRST
- AUTCOM
- AAPD
- National Leadership Consortium on Developmental Disabilities
- The Collaborative for Citizen Directed Supports-New Jersey
- Developmental Disabilities Administration (DDA)
- Trans United Fund
- National LGBTQ Task Force
- Fund for Community Reparations for Autistic People of Color’s Interdependence, Survival, and Empowerment
- Not Dead Yet
- Listen2Us
As well as several state and local developmental disability agencies and progressive supports brokerages, Values Into Action Pennsylvania and New Jersey.
I most certainly don’t have the answers, but I think I bring to the table an optimism, an internal commitment to self-determination and an awareness of the life demands and lived experience of an alternatively communicating, neurodiverse adult. I believe quite passionately that progress can be made if we embrace interdependence over the ableist mirage of self-reliance and independence.
WHY DJ?
David James (DJ) Savarese, who will oversee the project, has successfully designed and completed disability and social justice projects for over a decade as a Herbert Hoover Uncommon Student ’09-‘10, as an ASAN Scholar Fellow ’16-‘17, as an OSF Human Rights Initiative Community Youth Fellow ’17-‘19, and as the Deej: Inclusion Shouldn’t Be a Lottery Outreach Campaign director ’17- . Savarese also co-produced, narrated, and starred in the documentary, which won a Peabody Award for “unprecedented inclusive filmmaking.” His own national base of support and listserv from the Deej: Inclusion Shouldn’t be a Lottery Outreach Campaign, has over 1000 members from 40 different states. Co-Chair of the Alliance, he is a leader in the Neurodiversity Movement who is intimately connected with the broader, national disability community and regularly presents and collaborates both at the national, regional, and local levels.
One of only two AAC-using autistics to be fully included from kindergarten through college graduation, and a graduate of the Leadership, Organizing, and Action course at The Kennedy School at Harvard, he is well-versed in community building focused on empowering others to realize their own life outcomes. When DJ graduated from Oberlin College in 2017 and embarked on his DEEJ Outreach Campaign and OSF Fellowships, he was one of only a handful of alternatively communicating autistics to attend college. Since then, over 45 colleges and universities in over 15 states have AAC-using students with autism enrolled in degree-programs. Real change is possible when we’re motivated by lived experience to break down barriers.
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