Many in the disability community know the most important aspect of disability equity is nothing about us without us. Simply put, the idea is that decisions made impacting the disability community should not be made without major input from the disability community. I would extend the nothing about us without us idea to mean things impacting people with disabilities should not be made by anyone who does not have a disability.
It is this simple: decisions impacting the disability community should not be made unless people with disabilities have the authority to make those decisions. What that means is that government agencies, corporations, and every entity you can think of should hire people with disabilities to manage real community feedback from the disability community and those employees with disabilities should have the rank and authority to make changes that make the entity’s offerings more accessible to and inclusive of people with disabilities.
No longer should we accept governments establishing advisory bodies of volunteers equaling their extent of community outreach to our community. No longer should we accept people without disabilities taking that limited feedback and deciding how they will accommodate us.
Every federal agency should hire multiple people with disabilities to represent their agency to our community and empower them to make decisions impacting our community. Why is it that almost every determination of whether or not a person with a disability qualifies for public benefits is made by someone without a disability and little to no appreciation of the discrimination we face?
All businesses of reasonable size should employ and empower people with disabilities to represent us in their structure. People with disabilities should be on the board of at least all fortune 500 companies.
Until we are adequately represented and given actual authority to make changes designed to make society more accessible to and inclusive of us, society has no chance of being accessible to and inclusive of us.
We absolutely must continue filing complaints. We absolutely must continue educating people about inaccessibility. We absolutely must demand our access! But we cannot achieve the access we are entitled to until we demand the right to determine our destiny and define for our community what accessibility to us and inclusivity of us really mean. While this website and podcast are designed to help us work together to demanding our access under the existing structures, we cannot lose track of the truth that our true societal inclusion is not possible until demanding our access means demanding true representation and actual authority over our lives and our inclusion.
Nothing about us without us is the true standard of what disability equity means. As long as we accept tokenized, largely figurehead participation in shaping our destiny, almost everything about us will continue happening largely without us.