Starting Disability Organizations
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.
Start with Purpose
Section titled “Start with Purpose”Before building an organization, clarify why it needs to exist.
Key Questions
Section titled “Key Questions”- 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.
Build a Founding Team
Section titled “Build a Founding Team”Starting an organization alone is difficult and risks replicating individual leadership models. A strong founding group:
Composition
Section titled “Composition”- 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
Practices
Section titled “Practices”- 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.
Decide on Structure
Section titled “Decide on Structure”Organizations can take many forms. The right structure depends on your goals, values, and capacity.
Informal Structures
Section titled “Informal Structures”- 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.
Formal Structures
Section titled “Formal Structures”- 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.”
Organizational Basics
Section titled “Organizational Basics”Every organization needs systems for key functions, though these can be simple or complex depending on scale.
Governance
Section titled “Governance”- How will decisions be made? Who has authority over what?
- How will you resolve conflicts?
- How will leadership transition over time?
Accessibility
Section titled “Accessibility”- 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?
Administration
Section titled “Administration”- 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
Section titled “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?
Funding Approaches
Section titled “Funding Approaches”Organizations need resources to operate. There are many ways to resource disability organizing.
Community Resources
Section titled “Community Resources”- 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
External Funding
Section titled “External Funding”- 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
Considerations
Section titled “Considerations”- 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
Avoiding Common Pitfalls
Section titled “Avoiding Common Pitfalls”Organizations led by disabled people face particular challenges. Learning from others’ experiences helps avoid common problems.
Leadership Issues
Section titled “Leadership Issues”- 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
Section titled “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
Section titled “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
External Pressures
Section titled “External Pressures”- 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
Resources
Section titled “Resources”Organizational Development
Section titled “Organizational Development”- Tools for Power: Resource Kit for Independent Living: International guide to starting and running disability organizations
- NCIL Resource Hub: Resources for Centers for Independent Living and disability organizations
- Disability Inclusive Development Toolkit (CBM Global): International guide to disability inclusion
Volunteer Management
Section titled “Volunteer Management”- The Arc: Inclusive Volunteering: Resources on including people with disabilities in volunteer programs
- NCVO: Making Volunteering More Inclusive: UK resource on inclusive volunteer programs
Nonprofit Basics
Section titled “Nonprofit Basics”- National Council of Nonprofits: General nonprofit management resources
- Foundation Center: Grant seeking and nonprofit research
Related Pages
Section titled “Related Pages”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.
Contribute to This Page
Section titled “Contribute to This Page”Have lived experience or expertise that could strengthen this page? We especially welcome perspectives on models not well represented here, including those from the Global South and Indigenous communities.
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.