There is a question I have been asking myself more often lately: Who actually holds the power?
Not who is standing at the podium. Not who appears in the annual report. Not who is featured on social media during National AccessAbility Week or International Week of the Deaf. Those things may demonstrate visibility, but they tell us very little about where decisions are actually made.
Across many organizations serving Deaf and disabled people, inclusion has become increasingly visible. Websites feature diverse faces. Reports highlight lived experiences. Community members are invited to share their stories, sit on advisory committees, or participate in consultations. From the outside, it appears as though organizations have embraced the communities they serve.
But visibility and inclusion are not the same thing.
Over the years, I have watched organizations proudly promote Deaf and disabled people while continuing to make decisions about us without us. Community members are invited into conversations, yet they are rarely the ones deciding priorities, approving budgets, hiring leaders, or determining the direction of the organization. Their experiences are welcomed, their photographs are shared, and their stories are celebrated—but the authority remains somewhere else.
That is not shared leadership.
It is participation without power.
There is an important difference between asking someone for their opinion and trusting them with decision-making authority. Consultation has value. Engagement has value. Listening to lived experience is essential. But if the final decision always rests with someone else, then the community has not been empowered. It has simply been included in a process that someone else continues to control.
This is where I believe many organizations unintentionally confuse representation with inclusion. They measure success by how many Deaf and disabled people participated, how many attended an event, or how many appeared in a promotional campaign. Those numbers may look impressive, but they do not answer the questions that matter most.
Who established the priorities?
Who approved the messaging?
Who controls the funding?
Who decides which programs exist and which ones disappear?
Who has the authority to say, “This is no longer serving our community, and we are changing course”?
Those questions reveal whether power has actually been shared.
As someone who works within the Deaf community, I see this pattern repeatedly. Organizations speak about Deaf culture, create educational resources, deliver awareness training, and position themselves as experts on Deaf experiences. Yet the people shaping that work are not always Deaf. Sometimes Deaf people are consulted. Sometimes they review a document or appear in a video. Sometimes they become the public face of the project. But being visible is not the same as leading.
Deaf culture does not belong to organizations.
Neither do disability experiences.
They belong to the communities that live them every day.
Organizations can provide important services. They can advocate, educate, and support. Many genuinely want to create positive change, and many have dedicated staff who care deeply about the people they serve. This is not about questioning intentions. It is about examining structures. Good intentions do not automatically redistribute power, and inclusion cannot be measured by appearance alone.
What concerns me even more is when organizations begin speaking for communities rather than creating opportunities for communities to speak for themselves. The line between providing a service and becoming the authority on a culture is a fine one, but it matters. When organizations control the narrative, define the priorities, and determine what the public learns about Deaf and disabled people, they assume a role that should belong to the community itself.
Real allyship looks different.
A true ally does not seek to become the expert on someone else’s lived experience. A true ally creates space for that expertise to lead. They recognize when it is time to step forward in support and when it is time to step back so others can take the lead. They understand that leadership is not lost by sharing power; it is strengthened.
If we want genuine inclusion, we need to stop asking whether Deaf and disabled people are present and start asking whether they hold influence where it matters most. Are they helping shape the vision? Are they leading the conversations? Do they have authority over budgets, policies, hiring, and organizational direction? Can they change the outcome of a decision, or are they simply being informed after the fact?
These are not uncomfortable questions because they accuse organizations of bad intentions. They are uncomfortable because they challenge long-standing systems that have become accepted as normal.
We have become very good at recognizing diversity in photographs.
We have become far less comfortable redistributing power.
The future of disability inclusion should not be measured by how often Deaf and disabled people are seen. It should be measured by how often they are trusted to lead, govern, and make decisions that shape their own communities.
Because presence is important.
But presence alone has never changed a system.
Power does.
