Role models in the dwarfism community: Dr Judith Badner, MD

People with dwarfism are often stereotyped in popular media and culture. Yet our own voices are rarely heard; the full breadth of our contributions is rarely acknowledged. That’s why we embarked upon the RGA Dwarfism Role Models project – to amplify the voices of figureheads in our communities. In this installment, we had a chance to speak with the psychiatrist Dr Judith Badner, MD.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: Tom Shakespeare, Professor of Disability Research

Professor Tom Shakespeare

Welcome to the fourth installment in our series of interviews with role models in the dwarfism community. We spoke to Tom Shakespeare, Professor of Disability Research and radio show presenter. Here’s what he had to say to us:

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

My name is Tom Shakespeare, I was born in Aylesbury, Bucks, and now I live in Norwich, Norfolk.

And what do you do?

I am Professor of Disability Research at the University of East Anglia.  I teach medical students, and I also conduct disability research, both in UK and Africa.

Do you enjoy it?

Yes, I enjoy my work very much.  It is very varied: teaching here, interviewing someone there, writing a paper after that.  I enjoy meeting different people all the time.  In particular, I really like my medical students, they work very hard and they are committed to what they’re trying to do. I also do media work – particularly giving talks on Radio 4 – which I find very rewarding because I get instant feedback from listeners.  It’s always very satisfying to write a book – the feedback is not instant, more like a slow burn of appreciation.

How did you end up doing it?

I left Uni and worked for a couple of years in the co-operative sector.  I then went back to Uni and did a Masters and a Doctorate. After that, I worked as an academic for most of my career, with one five year break working at the World Health Organisation in Geneva, and another three year break to do arts activities.

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

I sometimes wonder about that.  I love media work, and maybe I could have tried to have become a journalist, either on a newspaper or in BBC radio.  But I feel mostly content with what I’ve done with my life.

What’s the best thing about your job?

Meeting different people is always rewarding. But I also love learning things, and this job is about continually finding new things out.

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

My first paid work was counting laundry in a hospital for people with learning difficulties for a week. The laundry was soiled. I don’t think it’s possible to find a worse job.

What are the best and worst aspects about being small?

Best aspect is that everyone remembers you. Worst aspect, from the age of 50, has been the health problems – back pain for years, now paralysis and being reliant on a wheelchair.

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

Don’t worry about relationships. If you have a positive personality, people will love you.

Which living person do you most admire and why?

Maybe Barrack Obama. He’s very clever. He’s very funny. He had a great impact on the world, and above all, he’s so cool.

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

Cooking, reading, watching films, listening to music.

What’s your favourite book?

Possibly The Blue Flower, by Penelope Fitzgerald. Or maybe The Third Policeman by Flann O’Brian. Or To The Lighthouse, by Virginia Woolf.  So many books, so little time!

What do you consider to be your greatest achievement?

I once used the word ‘antidisestablishmentarianism’, in the correct context, on BBC Question Time.

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

I hope people are still reading my books after I’m gone, and that at least one of them is a novel, not just an academic tome!

Role models in the dwarfism community: Becky Curran, international motivational speaker, advocate, and consultant

Welcome back, to the second in our new series of interviews with role models in the dwarfism community. A few days ago, RGA UK VC Eugene Grant caught up with international motivational speaker, advocate, and consultant, Becky Curran.

Here’s what she had to say. You can watch her TEDx Talk here.

Please introduce yourself: who are you and where are you from?
My name is Becky Curran. I’m 33 years old. I have Achondroplasia. I currently reside in New York City. I’m originally from south of Boston, Massachusetts, attended college in Providence, Rhode Island, and spent the first six years of my career in Los Angeles, California.

And what do you do?
I’m an international motivational speaker and an advocate for diversity and inclusion on a global scale. I spend most of my days working in the diversity department at the largest entertainment union, SAG-AFTRA, where we work to ensure greater levels of inclusion in entertainment and news media for performers who have been historically excluded. This includes little people.

Do you enjoy it?
I thoroughly enjoy the work that I do. What’s really satisfying about my job at SAG-AFTRA is that I’m in front of people every single day, and am given opportunities here that I might not be given in other work places where my capabilities might be doubted.

How did you end up doing it?
I got into this work to advocate for people who are physically different. After working at a talent agency and television studio for a total of six years, I began speaking to educate as many people as possible so they don’t doubt the capabilities of people who are often left out. My work at SAG-AFTRA is an extension of my advocacy work.

If you were 21 again, would you do something different?
If I was 21 again, I would have started speaking at more schools and organizations. It took until the age of 27 for me to start taking speaking seriously. Regardless, I moved out to California at age 22. Spreading my wings that early on isn’t something I’ll ever regret.

What’s the best thing about your job?
I feel very respected at SAG-AFTRA and I love collaborating with my colleagues and our members. The schools and organizations where I speak encourage me to feel empowered.

What’s the worst job you’ve ever done?
I would say that accounting, which I did during my first internship, was something I didn’t enjoy. However, I was glad that I gave it a try and then realized that it wasn’t for me.

What are the best and worst aspects about being small?
What you see is what you get. There’s no hiding being small. However I wouldn’t want to be born any other way. All I know is how to live my life as a little person. I may want to change the way that the outside world reacts to my difference but I’m fine being little.

If you could pass on one piece of advice to your teenage self what would that be?
Be independent, stay true to yourself, and don’t get too discouraged by rejection. Everything happens for a reason and each rejection makes you stronger for the next experience.

Which living person do you most admire and why?
I admire my father. He didn’t have the easiest childhood but he went on to build the family and life that he always wanted.

How do you like to pass the time, outside of work?
I love being by the water, photography, networking, traveling, trying new restaurants, spending time with family, and writing reviews for Google.

What’s your favorite book?
My favorite book is “Daring Greatly” by Dr. Brené Brown.

What do you consider to be your greatest achievement?
In November 2013, I was asked to skip American Thanksgiving with my family and travel from Boston to Kenya, in order to help launch little people organization. Before I made my travel decision, a little person in South Africa reached out to say that she wishes that she could have the confidence that I have. I give full credit to my parents and how well they raised me. I wish that this woman had the same amount of encouragement, from an early age. In Africa, and several other countries, parents are known to hide their children if they have any sort of physical difference. I knew that receiving that message was my calling. On December 3rd, 2013, 500 people, including families who were known to hide their children in other environments, came to celebrate the launch of the Kenya Association of People with Dwarfism. From American Thanksgiving through December 6, 2013, I had the opportunity share my story all over Nairobi, in newspapers, on radio stations, television talk shows, and on stage, in order to restore faith in the community and remind them that anything is possible. Nelson Mandela died on my last night in Africa. This is pretty ironic since he reminded all of us that “it always seems impossible until it’s done.”

When your time comes, how would you like to be remembered?
Influencer of more positive portrayals in the media, which led to more acceptance for all of the amazing little people who come after me. I would like to be known for my confidence, independence, perseverance, and all that I accomplished, despite living with dwarfism in an average height world.

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.