Role models in the dwarfism community: Sofiya Cheyenne

People with dwarfism are often misrepresented in popular media and culture. Yet our own voices are rarely heard. That’s why we embarked upon the RGA Dwarfism Role Models project – to amplify the voices of figureheads in our communities. One person we’ve been admiring for a while is the performance artist and educator, Sofiya Cheyenne, who recently appeared in the Shakespeare Theatre Company’s Richard III. Here’s what she told us.Read More

Role models in the dwarfism community: Kiruna Stamell

People with dwarfism are often misrepresented in popular media and culture. Yet our own voices are rarely heard. That’s why we embarked upon the RGA Dwarfism Role Models project – to amplify the voices of figureheads in our communities. To mark the start of Dwarfism Awareness Month 2018, we spoke with Kiruna Stamell, actress and disability rights activist. Here’s what we learned. Read More

Role models in the dwarfism community: Rebecca Cokley, Executive Director of the National Disability Council

Welcome to the first in our new series of role model interviews, which RGA UK staff have conducted with leading figures in the dwarfism community. Earlier this week, we spoke with Rebecca Cokley, Executive Director of the National Disability Council in the USA.


Please introduce yourself: who are you and where are you from?

My name it’s Rebecca Cokley. I’m a 2nd generation little person (both of my parents have dwarfism) and I’m the mother of two kids, Jackson and Kaya, both with Achondroplasia, too. My husband Patrick, is Average Height. I was born and raised in California but have lived in Washington DC since 2004. 
And what do you do?

I run the National Council on Disability. We are an independent federal agency that advises Congress, The White House, other government agencies, and the public on all issues impacting Americans with Disabilities. We work on everything from education, employment and healthcare to driverless cars, the civil rights of disabled parents, and police violence and the disability community.

Do you enjoy it?

Yes, the diversity of the disability community and the issues we face mean that my work is never boring. There is always a new challenge to tackle and new constituents to work with. 

How did you end up doing it?

I studied political science in college and moved to Washington DC in 2004 to work at a non profit called the Institute for Educational Leadership, which works to improve the systems that support young disabled people as they transition to adulthood. The year I moved here I went to a fundraiser and met then Illinois State Senator Barack Obama. When he set up his presidential campaign in 2006 he was the first to establish a disability policy committee and I joined it and worked to elect the first Black president in U.S. History.  After we won the election, it was another little person, Paul Steven Miller, who recruited me to work at the Department of Education for a year and then I was recruited by the White House to be in charge of recruiting people from marginalized and diverse communities to serve in the Administration. After a few years of doing that I went to work for the U.S. Department of Health and Human Services to help with the rollout of the Affordable Care Act. It was there that in 2013 a mentor of mine reached out to me and asked me to apply to serve as the Executive Director of NCD.

If you were 21 again, would you do something different?

Two words, internet stock.

What’s the best thing about your job?

I’m happiest in my job when we are tackling the issues that really affect people’s lives but that no organization has talked about. For example, in the United States over 30 states allow disabled parents to have their children taken by the state for no other reason than them being a person with a disability. I had never even considered this an issue, being raised in a family where both of my parents were little people. 

What’s the worst job you’ve ever done?

I can’t really say any job I’ve had was the worst, they’ve all been pretty different, but have allowed me to learn a lot and interact with people. I worked retail for several years with Victoria’s Secret and some people think that’s weird for a policy wonk, but to me it taught me how to talk to anyone and make them feel comfortable. 

What are the best and worst aspects about being small?

It’s sort of the same thing, the recognizability of being small. It definitely is an advantage in that people I’ve worked with always remember me, even if they don’t recognize most people. On the other hand I think because of reality shows, people think that they can just walk up on us and say whatever they think, take our pictures without consent, or harass us. 

If you could pass on one piece of advice to your teenage self what would that be?

To not be phased by men who tell me I’m bossy or I’m angry, but to use the anger I feel to fuel me forward.

Which living person do you most admire and why?

Judith Heumann and Talila Lewis (TL). Judy is a pioneer in the disability rights movement in the U.S. & internationally.  I wouldn’t have been able to get an education if it weren’t for her. TL is an extremely powerful advocate for reforming/abolishing the prison system and advocating on behalf of Deaf and disabled inmates. 

How do you like to pass the time, outside of work?

I like to spend time with my husband Patrick and my kids. I tend to be super nerdy so in my spare time I like to build lego sets, specifically ones from Star Wars. 

What’s your favourite book?

Harry Potter and the Prisoner of Azkaban by J.K. Rowling

What do you consider to be your greatest achievement?

While at the White House I co-hosted the first White House Summit on LGBT people with disabilities. To use President Obama’s platform to invite in people who had never heard their issues represented before in such a place was exciting and empowering. 

When your time comes, how would you like to be remembered? 

As an ally who used her pulpit to elevate others.