Nothing About Us Without Us: The Heart of True Advocacy

The phrase “Nothing about us without us” has become one of the most powerful mottos in advocacy. Originating from disability rights activists, it encapsulates a simple but profound demand: no policy, program, or decision that affects a marginalized group should be made without the meaningful participation of that group.

This principle applies not only to disability but to every community that has been historically excluded:

• Disability: No accessibility audit should be conducted without disabled people leading it.
• Migration: No integration policy should be designed without refugee and migrant voices at the table.

The Role of People Without Disabilities in Advocacy

People without disabilities or any form of privilege, can play a powerful advocacy role, but it must be one that centres the voices of those most affected. Here is what that looks like:

What Allies Should Do:

1. Create platforms, not performances. Amplify disabled voices by sharing their content, inviting them to speak, and ensuring they are compensated.
2. Use your privilege to open doors. If you have access to decision-making spaces, bring disabled and marginalized people with you.
3. Advocate for structural change. Challenge inaccessible buildings, discriminatory policies, and exclusionary hiring practices.
4. Fund the work. Support disability-led organizations, pay disabled consultants their full rate, and allocate budget to accessibility.
5. Listen more than you speak. When a disabled person tells you something is inaccessible or harmful, believe them.

What Allies Should NOT Do:

1. Speak over disabled voices. Do not dominate conversations about disability with your own perspectives.
2. Tokenize. Do not invite one disabled person to a meeting and claim you have “included” the disability perspective.
3. Define the problem and the solution. Do not design accessibility initiatives without consulting the people they are meant to serve.
4. Expect gratitude. Advocating for equity is not a favour. It is a responsibility.

CODA and SiD: The Bridge Between World

In the Deaf community, there exists a unique and powerful group of individuals: Children of Deaf Adults (CODA) et Signings of Deaf Adults (SiD). These are hearing individuals, typically children or family members, who grow up immersed in Deaf culture and sign language.

CODA and SiD are not Deaf themselves, but they are deeply embedded in Deaf culture. They often serve as interpreters, cultural bridges, and advocates for their Deaf family members and communities.

Why CODA and SiD Matter:

• Native sign language fluency: Many CODA individuals grow up with sign language as their first language.
• Insider-outsider perspective: They understand both Deaf culture and hearing world dynamics from personal experience.
• Natural advocates: Many CODA individuals have spent their lives advocating for their Deaf family members.
• Educational leadership: CODA individuals often become teachers, interpreters, and leaders in Deaf education.

But crucially: CODA and SiD are not replacements for Deaf voices. They are allies, supporters, and collaborators—but the leadership must always rest with Deaf people themselves.

DEI Champions: What Organizations Need

For organizations that want to move beyond performative diversity, the solution is not a token hire or a performative statement. It is embedding equity throughout the organization—and that requires dedicated people driving the work.

What a DEI Champion Is (and isn’t):

DEI Champion is NOT:

• A token hire to check a box
• Someone who does DEI work “on the side”
• The only person responsible for fixing all exclusion
• Expected to educate everyone for free
• A replacement for leadership accountability

DEI Champion IS:

• A strategic role with real authority
• Someone with dedicated time and resources
• A collaborator who works across teams
• Fairly compensated for their expertise
• Supported by leadership, not siloed

What DEI Champions Can Do:

1. Drive strategic accountability. Ensure DEI is not a side project but a core organizational priority.
2. Conduct inclusive audits. Review hiring, retention, promotion, and compensation practices.
3. Lead education and training. Facilitate workshops on unconscious bias, accessibility, and inclusive leadership.
4. Create safe feedback channels. Establish mechanisms for employees to report discrimination.
5. Build external partnerships. Connect with disability-led organizations and community groups.
6. Measure and report progress. Track DEI metrics and hold leadership accountable.

A Final Truth About Advocacy

Advocacy is not a favour that privileged people extend to marginalized communities. It is a responsibility that comes with power. If you have a seat at the table, it is your duty to ensure that others can join you. If you have a voice, amplify those who have been silenced. If you have privilege, use it to dismantle the systems that created it.

But remember: the work is not yours to lead. It is yours to support, fund, and create space for. The leadership always belongs to those most affected.

Nothing about us without us.

A Question for Reflection:

Where in your organization are decisions being made about marginalized communities without their meaningful participation? What is one step you can take this month to centre their voices?