Centering the Disability Community
General Overview
Disability work should be informed and led by people with disabilities. It is critical when doing access work to center the disability community — which means ensuring that the voices, perspectives, identities, needs, and preferences of people with disabilities are embedded within all your organization’s planning and decision-making. Centering the disability community also ensures that access policies, practices, and programming are co-created by and with disabled people, informed by a nuanced understanding of disability, and developed in response to the actual needs and preferences of the disability community. By centering the disability community, your organization can foster meaningful relationships with disabled individuals, which increases trust, participation, and representation. You can also bring a more intersectional approach to your access work, recognizing the range and complexity of experiences of disabled people in connection to other identities and lived experiences.
Implementation
There are many reasons to center the disability community in your organization’s work, including:
- Informed, authentic approaches
Centering the disability community ensures that you can inform and co-create your policies, practices, and programming with a nuanced understanding of disability. It empowers more authentic, informed, and expert-driven approaches. And it embodies the principle of “nothing about us without us.” - Building trust and relationships
Centering the disability community builds genuine relationships and fosters meaningful connections with disabled individuals. It increases trust, participation, and representation, ensuring that the voices of disabled individuals are central to decision-making, thus promoting more inclusive, responsive outcomes. - Meeting actual needs
Centering the disability community ensures that access policies, procedures, and practices meet the actual needs of the community, providing a more accurate and informed understanding by persons directly impacted. - Making inclusion tangible
Centering the disability community creates an environment where accessibility is not just a set of rules but a lived reality, making inclusion tangible for all individuals. - Fostering collaborative environments
Centering the disability community emphasizes interdependence, fostering collaborative environments in arts and cultural spaces where individuals with disabilities can meaningfully contribute and shape the experiences offered. - Acknowledging historical context
Centering the disability community acknowledges the historical marginalization of people with disabilities and honors their lived experience and expertise by challenging practices where nondisabled people make decisions on their behalf.
To better center the disability community in the work your organization is doing, consider the following guidelines:
- Ensure equitable participation
Prioritize accessibility in all internal (staff, volunteers, artists) and external (visitor-facing) areas, including physical spaces, programs, services, and communication. This helps ensure equitable participation (many pages of The Hub can help you plan for this). - Build relationships with disability organizations
Establish and nurture relationships with disability organizations (including Centers for Independent Living, cultural accessibility consortiums, student disability offices within higher education, disability commissions, etc.) in your area to build trust over time. - Increase representation at all levels
Increase representation of people with disabilities within your organization — including in leadership, on staff, and among advisors, consultants, volunteers, artists, and cultural workers. Ensure disabled stories and voices are represented in the work being presented by your organization. - Create spaces for community building
Create spaces for staff, volunteers, and other members of your team to build community through an employee resource group, affinity group, or similar structure. Provide a budget, and structure so that they can inform practices, share lived experiences from within the organization, and help to shift the institutional culture. - Establish an access advisory board
Create an access advisory board with ample representation by disabled people, ensuring diversity of disability types and intersectionality of identities. Ensure that their advice informs all aspects of the organization’s internal and external access work. - Solicit ongoing feedback
Solicit feedback and expertise from people with disabilities on an ongoing basis, as well as at various stages of development, including design, pilot/testing, feedback, and revisions. This includes bringing user/experts with lived experience of disability to provide valuable insight and perspective. - Compensate expertise
If bringing in external advisors, consultants, or user/experts, compensate them for their time and expertise. Listen to and honor their contributions, and then update them on progress and changes made.
Finally, incorporate these additional considerations into your disability community engagement work:
- Acknowledge diversity within the disability community
Recognize that no one person can speak on behalf of an entire community or even all individuals with the same disability. Also understand that disability experience can vary significantly, due to its many intersections with race, gender, socioeconomic status, sexuality, class, migration status, religion, body size, and other lived experiences. - Honor individual preferences for involvement
Avoid assuming that a person with a disability wants to represent the entire community or act as an expert/voice on accessibility. Ask if and how they want to be involved. - Provide accessibility regardless of disclosure
Understand that some individuals with disabilities may choose not to disclose due to stigma or fear of discrimination, and that not everyone who benefits from accessibility resources or services identifies as disabled. Whether or not someone discloses should not determine the level of accessibility provided. It’s important to create a safe environment where individuals feel comfortable disclosing if they wish, while respecting those who prefer not to. Allyship is key in fostering this safe space.
Associated Legal Requirements or Obligations
Please note that, while this content was developed by people with expertise in the ADA and legal requirements related to access, it was created for informational purposes and should not be considered legal advice.
There is no legal requirement to center people with disabilities in your work, however having an advisory group or some other means of engaging with the disability community for input into the process of developing and delivering accessibility services is strongly recommended.
Learn More
While external resources have been vetted and reviewed, the Hub does not have ownership or oversight of these external resources. If you’d like to add or suggest resources or if you encounter any issues, please let us know using this form.