Nothing About Us Without Us!
by Patricia
The statement Nothing About us Without Us is something I strive to practice in all of my work as a disability services provider. So often decisions are made for people with disabilities by people like me — service providers — without even involving the person who has the disability. The disability advocacy community coined the phrase “Nothing About Us Without Us” decades ago to raise awareness that making decisions for others is disempowering and, really, just disrespectful.
Thankfully my career started in Berkeley, California, a Mecca for disability advocacy. I was schooled early on in my career about the disability rights movement. My area of expertise has always been individuals with autism who have significant challenges, including difficulty using spoken language to communicate.
As a teacher, I spent so much time with my students that it was easy to include them in their educational planning. We learned together about their strengths and preferences. Through daily activities they could show me, if not tell me, what they really wanted to be learning at school. Using alternative forms of communication, they could also direct many of their daily activities.
In my job now as a director of services, I have to work a little harder to ensure that my work includes people with autism. I am often attending meetings, giving lectures and writing documents without a person with autism in sight. I have to work a little harder to ensure that people with autism are represented.
Many people with autism are generous in sharing their stories with me and are happy to have me share their stories with others. These stories provide a direct connection to people with autism. Stay tuned to my next blog post, where I’ll share one of these wonderful stories — about Zhan Ge, a woman living with autism in China.