A Note from Rebecca Cokley
I grew up in a family where my mom and dad were little people (LP), too. All three of us have Achondroplasia, the most common form of dwarfism. Everyone else in our family is average sized. My family never raised me to be ashamed of being an LP, to be embarrassed to talk about my disability, or to think about myself as “special” or “less than capable.” If they had, I wouldn’t be where I am today, a Director of Priority Placement in the Presidential Personnel Office of the White House. My job is helping to create an administration that reflects the diversity of America and my own experience helps inform my job daily.
Set Expectations Early & Expose Youth with Disabilities to Role Models
One of the most important things that parents, families, and supportive adults can do to empower children with disabilities is to expose them to mentors and role models with disabilities. I remember in high school when my counselor told me that “Kids like you don’t go here. They go to the special school.” I wanted to be a civil rights attorney and this experience made me more determined. As a kid, my mom had introduced me to Paul Steven Miller, the longest serving Commissioner of the Equal Employment Opportunity Commission, a Civil Rights icon, and an LP. Once I told Paul I wanted to be a lawyer, he’d constantly ask me what I was doing to prepare. When I was 12, he wanted to know what cases I was reading about, and what schools I was thinking about going to. It set expectations in place that I had to achieve my goals.
Don’t Shelter People with Disabilities, Emotionally or Physically
So many times the adults in the lives of people with disabilities don’t want to allow them to make mistakes, take risks, or see the less than friendly side of the world. While the parental instinct to protect your children is natural, (I see this first hand now that I’m a mom), making mistakes and living with the consequences is a natural part of growing up. When we take these experiences away, we take away youth’s ability to cope with the challenges life throws at them. I used to get teased and called names, like “midget” (which is considered extremely offensive to the dwarfism community). My mom used to say “Yes this isn’t fair, yes it’s mean and cruel, but sometimes life is like that. I know you want to lash out, but the best way you can get back at them is by being successful.” To add to this, youth with disabilities have a right to be youth. They should be supported to participate in sports (given the sign off of qualified medical personnel and their parents), engage in clubs and leadership activities, be encouraged to stretch themselves academically (there is no reason a student can’t have a 504 plan or IEP and also be in gifted classes) and make friends with other young people with and without disabilities.
Don’t Fear the “D” word
When I started consulting on transition issues facing youth with disabilities, I also got to know Andy Imparato, the then-President and CEO of the American Association of People with Disabilities. Andy is openly Bi-Polar and was one of the first people I talked to about having Obsessive Compulsive Disorder (OCD) in addition to dwarfism. When traveling to a youth conference where we were both speaking, he asked me why I never talked about my OCD. I said that by walking in the door they could already tell I was disabled and that was enough. He challenged me to talk about my OCD, and empower others to feel more comfortable talking about their hidden disabilities. I see my disabilities as just another part of who I am. It doesn’t define me completely, but it definitely impacts who I am, the decisions I’ve made, and the path my career has taken. “Disability” unlike, “special needs,” or “differently abled,” is a civil rights term. I encourage people with disabilities and their families to use the term disability, own the word and own the civil rights protections that come with it, protections when you are denied a job that you are qualified for, protections when you are denied access to the general education curricula if you have proven you are able to handle it, and protections when you are denied access to society whether it be captioning on television, or an door opener at the mall. When you use the term “disability” you are engaging in advocating for your civil rights. Don’t fear the “D” word.
Rebecca Cokley is the Director of Priority Placement for Public Engagement in the Presidential Personnel Office at the White House. Previously she worked as the Confidential Assistant to the Assistant Secretary for the Office of Special Education and Rehabilitative Services. For the past 15 years she has dedicated her career to improving transition outcomes for at-risk youth with groups including the Institute for Educational Leadership, the National Center for Cultural Competence, the American Association of People with Disabilities, and the Leadership Conference for Civil and Human Rights. During the 2008 Presidential campaign, Rebecca served on the leadership of the Obama Disability Policy Committee. She has a B.A in Political Science from the University of California Santa Cruz, and is the proud mother of Jackson.