All disabled people have the right to form and join organizations of persons with disabilities, as affirmed by Article 29 of the UN Convention on the Rights of Persons with Disabilities. This page centers disabled people's expertise and is informed by disabled-led organizational development globally.
Disabled people have long created their own organizations—advocacy groups, independent living centers, mutual aid networks, cultural groups, youth collectives, and identity-specific spaces. Organizations of disabled people (often called DPOs—Disabled People's Organizations) are different from organizations for disabled people run by non-disabled professionals.
Before building an organization, clarify why it needs to exist.
- What gap are we filling? What need isn't being met by existing organizations?
- Who is directly impacted? Who should be leading and benefiting from this work?
- Is this a DPO? Will disabled people hold leadership positions and make decisions?
- How do we avoid replicating charity models? What distinguishes this from paternalistic approaches?
Be honest about whether a new organization is needed. Sometimes the most effective path is joining or supporting existing organizations rather than starting something new.
Starting an organization alone is difficult and risks replicating individual leadership models. A strong founding group:
- Includes disabled people with varied experiences, identities, and perspectives
- Represents the community the organization intends to serve
- Has a mix of skills (organizing, administration, communication, etc.)
- Shares commitment to the organization's purpose
- Shares responsibility and decision-making
- Practices collective access from the start
- Develops transparent processes for disagreement and conflict
- Plans for sustainability and succession from the beginning
If you can't find others who share your vision, that's worth examining. It may mean the need isn't as urgent as you thought, or your approach needs adjustment.
Organizations can take many forms. The right structure depends on your goals, values, and capacity.
- Collective: Shared leadership and decision-making, often without formal legal status
- Mutual aid network: Focused on direct community support rather than advocacy or services
- Working group: Time-limited collaboration around specific projects or campaigns
These structures are flexible and accessible but may limit access to funding and legal protections.
- Nonprofit corporation: Can receive tax-exempt donations, requires board governance and reporting
- Fiscal sponsorship: Operates under another nonprofit's legal status while maintaining independence
- Chapter of national organization: Leverages existing infrastructure and name recognition
- Cooperative: Member-owned structure with democratic governance
Choose the structure that aligns with your values and needs—not just what funders expect or what seems most "professional."
Every organization needs systems for key functions, though these can be simple or complex depending on scale.
- How will decisions be made? Who has authority over what?
- How will you resolve conflicts?
- How will leadership transition over time?
- What access practices will you maintain for meetings, communications, and events?
- How will you ensure disabled people can participate fully?
- How will you address access needs you haven't anticipated?
- How will you manage money (even small amounts)?
- How will you communicate internally and externally?
- What records do you need to keep?
¶ Membership and Participation
- Who can be a member? What does membership mean?
- How will volunteers be engaged and supported?
- How will you develop new leaders?
Organizations need resources to operate. There are many ways to resource disability organizing.
- Member contributions: Dues or donations from members
- Community fundraising: Events, crowdfunding, direct appeals
- Mutual aid pooling: Sharing resources among members
- In-kind support: Donated space, services, expertise
- Foundation grants: Private foundations with disability or social justice focus
- Government grants: Federal, state, and local funding for disability services or advocacy
- Corporate sponsorship: Funding from businesses (be cautious about strings attached)
- Fee for service: Income from training, consulting, or other services
- Funding often comes with conditions that can shape organizational priorities
- Diversified funding provides more stability than relying on single sources
- Some funding sources may conflict with disability justice values
- Small organizations can accomplish significant work with modest resources
Organizations led by disabled people face particular challenges. Learning from others' experiences helps avoid common problems.
- Non-disabled leadership: Organizations claiming to serve disabled people but led by non-disabled professionals
- Single charismatic leader: Over-reliance on one person who becomes irreplaceable
- Lack of succession planning: Organizations that collapse when founders leave
¶ Labor and Sustainability
- Unpaid disabled labor: Expecting disabled people to contribute expertise without compensation
- Burnout: Pushing past sustainable limits, especially for disabled organizers
- Scope creep: Taking on more than capacity allows
¶ Access and Inclusion
- Inaccessible meetings and materials: Failing to practice the accessibility you advocate for
- Narrow representation: Serving only some disabled people while claiming to represent all
- Tokenism: Including disabled people in appearance without real power
- Funder capture: Changing priorities to match what funders will support
- Depoliticization: Softening advocacy to seem more "reasonable"
- Co-optation: Being absorbed into systems you intended to change
This page centers disabled people's expertise and is informed by disabled-led organizing globally. For questions or to suggest additions, see How to Contribute.