representation

Representation is important. That fact is apparent to nearly all members of marginalized communities. To see yourself reflected in the culture in which you live is a validating thing, especially for young people, and I’m glad to see our heroes beginning to reflect the diversity of the American experience. Empowerment begins sometimes in simple ways, with children of color leaping around as Black Panther, or young girls flying around as Wonder Woman, punching the bad guys into orbit. Yet, as those children age they need to be able to look into the real world, and see not just a collection of amazing adults with disabilities on their screen, but adults with disabilities in positions of power, shaping the world around them.

The disability community has benefited in countless ways from the advocacy efforts of able-bodied allies and advocates. But as allies in positions of prominence within the disability field retire or new positions are created, it creates an important opportunity, a chance to address one of the most common criticisms levied by disability advocates outside the non-profit field. Namely, our failure to sufficiently address concerns of representation, or establish prominent national leaders with disabilities or mental illness.

While many organizations in the disability field boast a diverse and inclusive workforce, they often make little effort towards securing disabled leadership at their highest levels. Despite the rhetoric, this inaction mirrors much of the toxic paternalism that has entrapped generations of disabled people. When those in the disability field elect to ignore this disparity of power, they fail to keep pace with the impact of their own success. To forgo fostering disabled leaders is to risk missing out on a generation of talented, dedicated adults with disabilities and mental illnesses, individuals raised under the protections and heightened expectations of the post-ADA world.

As a person with a disability, and as a professional who intends to dedicate my life to working alongside disability organizations, I expect that movement to reflect the community I hold central to my identity. This is only possible when people with disabilities hold positions of power and prevalence. In the past, ‘Nothing about us without us’ was sufficient, even radical, in its call for the inclusion of disabled voices. But we need to demand more than a seat at the table. We must remind our allies whose table it is in the first place.

The able-bodied have historically failed the disability community, and even the best intentions have left lives destroyed. In segregating us, evoking the threat of police violence, or sustaining systems which ensure people with disabilities languish in poverty, the able bodied have long since taught disabled people the importance of self-advocacy as a form of self-defense. It is no wonder that we have begun to favor leaders that reflect our community, and have experienced firsthand the human consequences of ableism. We should not apologize for distrusting a majority that has shown itself to be unworthy of that trust, nor calling for leaders who reflect our experiences. True allies don’t just stand in support of the marginalized. They also step aside when asked, and the time to ask is now.

Through their staffing choices, disability organizations model to employers across the country how to view inclusion. Nearly every mainstream non-profit dedicated to combating systemic oppression for select groups take it as a given that its leadership should be reflective of that group. The very idea of doing otherwise would be laughed off as absurd. When Rachel Dolezal was outed as a white woman leading a NAACP state chapter, she was almost universally rejected, and her qualifications to be chapter president were called into question. Yet, every day, advocates for people with disabilities purport to speak for a community of which they are not a part, and whose cultural language they do not speak. When a white majority speaks for people of color it’s rightfully questioned, all while the Rachel Dolezal’s of the disability world are celebrated. We must reject the idea that able bodied representatives are the main spokespeople of the disability community.

Within the disability community, we are conditioned to accept the presumption that we lack the professional capacity or experience to produce capable national leadership, all while national leaders without disabilities are all too often treated as trusted stewards, growing the movement for their disabled friends. What a profound waste. People with disabilities are a minority group with a long cultural history, tremendous ability and a wildly underutilized reservoir of talent. We are lawyers, doctors, parents and programmers. We have found success in every profession, even while so many of us are underestimated.

Even if the disabled community truly does lack the capacity to lead the disability rights movement (an assumption I don’t for a minute believe), the failure at least will be ours. Better our failure then paternal success. We will not be spoon-fed our rights, or given only glimpses of national power. To accept less then direct control over our own revolution would be to disrespect the efforts of all the amazing advocates who came before us.

So, mindful of the incredible history of the disability rights movement, and the inherit capabilities of those with disabilities and mental illness, we must demand the following from all organizations who proclaim disability justice as a core element of their mission:

• Recognition of the failures of disability organizations to secure leadership that reflects the disabled population or place them in positions of power internally.
• Commitment from all levels of the organization to embrace the cultural expectation that organizations will strongly prefer qualified applicants with disabilities for managerial positions, with quantifiable goal of a minimum of 50 percent representation of people with disabilities in leadership positions by 2030.
• A commitment to build skills and leadership qualities within staff with disabilities, giving self-identifying staff with disabilities or mental illness the structure and tools needed for professional development.

Far too often, the disability community has been harmed when we feel forced to prioritize the feelings of our allies over our own voices and needs. This cannot continue. While we will always endeavor to be kind, welcoming and empathetic to those from all backgrounds, our goal must first and foremost be to create a space for people with disabilities and mental illness and establish a strong base of political power. In demanding greater agency over the national disability rights movement, we do credit to the amazing advocacy that made such an expectation possible. People with disabilities will lead the disability rights movement. The only question is if our allies will have the courage and conviction to follow.