Deliberate Democracy for Disability Empowerment
20 percent of our fellow Americans live with disabilities. Where are they? Why do people with disabilities continue to face so many barriers to full inclusion in our society?
On paper, civil rights for people with disabilities have been recognized through laws and court cases starting in the 1970s: IDEA, ADA, …
These laws and rulings have made a difference, but, for the millions of Californians and Americans who have disabilities, the reality is pretty grim. Poor education, limited economic opportunities, social stigma and isolation, segregation, discrimination… even when a law is passed or a court case is won, our society and systems continue to grind down the lives of the disabled and their families.
The struggle for true equality and inclusion for people with disabilities is far from complete.
Discrimination and segregation is so deep and pervasive in our society that most Americans don’t even know that 1 in 5 Americans – children and adults – live with disability – the Forgotten Fifth.
It is time to accelerate the movement for civic change. Move the struggle to its next phase. Change our systems, our politics, our culture.
It is time to transform the communities of peoples with disabilities into a single, empowered, Disability Community. Become a fully equal, included, empowered part of our society.
It won’t happen by accident.
It is time for Deliberate Democracy.
Not Without Us grew out of the personal experiences each of us faced supporting our kids with disabilities. Nothing prepares you for it. Individualized Education Programs. Special Education. Services.
It all sounds great on paper, but the reality is different.
Instead of real education, our kids face isolation, discrimination, and a segregated school system. For one of us, the school system wouldn’t properly diagnose our son or tell our family that there was a program run by the county that could (and did) help us. And it is not just in school.
For another one of us, both of our parents had heart surgery during the first full year of autism therapies for our son. We paid substantially more in insurance premiums than them.
Both school and state services are more in the category of “Don’t tell, don’t ask” – we won’t tell you what you are eligible for and we don’t want you to ask.
What in the world was going on?
What is Deliberate Democracy?
At first, we thought it was a bureaucracy problem.
But it ran deeper than that.
If you read the laws, they are pretty good. If you read the court cases, they (mostly) make reasonable statements.
The disability rights movement, like all civil rights movements, succeeds by changing society itself. We must:
- Build awareness – educate the disabled communities and society as a whole about the reality of disability in our society. A key challenge is to unify the various disabled communities and connect parents of children with disabilities to disabled adults.
- Develop grassroots activists – find, activate, encourage, support, train, grow and develop individuals and groups who care about empowering the disability community as a whole to take on issues big and small, local, statewide, national, and global.
- Incubate new leaders – in the private, not-for-profit, public sectors and elected officials at all levels. First and foremost, individuals from within the disabled community and are parents of children with disabilities, but we must also nurture allies everywhere.
- Create a blueprint for action – develop a strategy and plan. For snkids.org, our initial focus is on educational inclusion in California.
- Follow through – the way we are going to change society to be welcoming and inclusive of all disabled people is to start making that change happen!
Ramps help everyone.
This is a long term effort that goes beyond Not Without Us itself. This is not about “just” fighting for rights, but to welcome all people of all abilities to truly be part of our society – a place at the table.
Deliberate democracy for disability empowerment.