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?
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.
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.
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.
School and public libraries can help combat prejudice by promoting positive portrayals of people with dwarfism, according to the new ‘Spread The Word’ campaign launched today by leading dwarfism charity, RGA UK.
The charity – which campaigns to ensure people with dwarfism have the same opportunities as everyone else – has teamed up with two ground-breaking authors to encourage school and public libraries to stock children’s books showing dwarfism in a positive and realistic light.
Supporters are encouraged to contact their public or school library to request they stock ‘Strong and Mighty Max’ by Kristina Gray and ‘We Are Giants’ by Amber Lee Dodd, as well as ‘I can’t not never be very tall’ by Susan Hatton.
Template emails and letters to send to libraries – as well as Tweets, and Facebook posts – are available from the RGA UK website. Click here.
The aim of ‘Spread The Word’ is to promote more positive and accurate depictions of people with dwarfism who are otherwise often widely mischaracterised as people from fairy tales, myths, and fantasy stories.
RGA UK believes such misrepresentations can perpetuate stereotypes, prejudice, and misconceptions among children at a young age.
Books such as these help to introduce children to dwarfism, disability, and difference in a positive and realistic light.
Both authors have some availability to visit libraries and schools and talk to children about their books.
Chair of RGA UK, Gillian Martin, said: “There is an urgent need to address depictions of dwarfism, in our media and popular culture, which too often misrepresent members of our community as people out of myths, fairy tales, and fantasy novels.
“Introducing children to dwarfism and disability – of all sorts – at a young age helps them to become familiar with and accommodate difference and diversity, which we believe should be celebrated and embraced.
“These authors have done wonders to help us achieve this and we are very proud to support their books, which should be in every library across the country.”
Commenting on the campaign, Kristina said: “I am thrilled to be part of the RGA’s campaign to combat negative stereotypes of people with dwarfism. Educating young minds with positive role models is the key to empowering the next generation to value each other’s differences as something to be celebrated and respected.
“For a child who is born with a rare condition there is no greater feeling than picking up a story book and finding out that the main character is just like you.”
Amber Lee Dodd said: “Children’s fiction can often be a powerful medium for positive social change, which is why I’m very honoured that ‘We are Giants’ has been picked by RGA to promote positive representations of dwarfism – especially as ‘We are Giants’ is about never needing to be anything other than who you are.”
‘Strong and Mighty Max’ is aimed at Early Years and Key Stage 1. Max, born with Achondroplasia (a form of dwarfism), explains that Achondroplasia is a ‘big word’ and not a special ‘superpower’; it simply means his bones grow differently. It is a wonderfully illustrated story encouraging discussion about how everyone is born different.
‘We Are Giants’, for readers aged 9+, is written from the view of a young girl who lives with her sister and her mum who has dwarfism. Her deceased father also had dwarfism. When her mum gave birth to two average-sized daughters, people were sceptical about whether she could take care of them. It has been endorsed by best-selling author, Jacqueline Wilson, and reviewed by The Guardian.
It was also nominated for a number of national awards including the 2017 Branford Boase award for most promising children’s debut novel and Longlisted for the 2017 Waterstones’ children’s fiction award.
Are there other books that you think positively portrays people with dwarfism? Why not add these to your list and let Team RGA know via firstname.lastname@example.org.
RGA UK is in no way commercially connected to the authors nor does the charity benefit financially from sales of these books.
We are Giants / Amber Lee DODD / Quercus Children’s Books / ISBN 9781784294212
Strong and Mighty Max / Kristina GRAY / Matador /ISBN 978178589046
I can’t not never be very tall / Susan HATTON / CreateSpace Independent Publishing Platform / ISBN 13: 9781499717747
In 2015, Keith Hopkins, known affectionately as “the Raffle Man”, was awarded the lifetime achievement award by RGA UK, in recognition for his tireless fundraising at conventions over many years.
Aldo Navato recalls: he was the “most charming and likeable man. [He] could be outrageously and unintentionally funny, which is why I thought the world of him. No equal as a relentless separator of member and hard-earned raffle money.” April Barrett recollects how Keith “was one in a million, and [I] so loved chatting to [him] at conventions. We also had a few great dances in the early years too!”
It took some years for Keith to find RGA UK, but, after joining in 1989, he soon became an active member and only missed one convention in all his time. In recent years, he enjoyed sitting back and having a more relaxed time at the organisation’s annual events. Many more of his friends have recalled how he was a big part in conventions over many years.
He also travelled to many of the regional events, held across the country. Steph Birch remembers from her time as the Chair: “wherever the RGA had hired a village hall and a children’s entertainer, Keith would be there with his friends Pam and Chris. No distance seemed too far and he always enjoyed talking to everyone – young and old. Raffles weren’t limited to convention; he would help out wherever and whenever he could. Each time we’ve seen him, he would always talk to the children and ask how they were getting on. He was a very gentle man and his presence at these events meant a lot to us as a family”.
Keith was born in London and described himself as a happy child with blond curly hair. His Dad also had Achondroplasia and his Mum was average height. He was an only child, but close to his cousins and wider family throughout his life. He took regular holidays to stay with his cousin Tony in Winchester.
In Keith’s early years, he was educated in a school for children with special needs – not uncommon for the time, when children with differences were often educated separately from the mainstream. After leaving education, he joined his dad’s workplace and was employed as an office clerk at Morganite. He started work in London. When the factory transferred to Swansea, he moved there, with his family. Here Keith worked throughout his career until retirement, aged 65. The city became home for Keith and he supported Swansea City Football Club.
Keith had many interests outside of RGA. He loved classical music and enjoyed more contemporary artists, such as Catherine Jenkins. Driving gave Keith independence and pleasure. Meteorology was a keen interest. Keith followed the pressure charts and enjoyed the cerebral challenge of interpreting the anticipated weather. He cared about the Royal Family and sent the Queen and other senior royals cards, to show his support. Keith also had a strong personal faith, which gave him great comfort.
In the last couple of years, friends could see Keith becoming more frail. Despite his poor health, he continued to live independently – staying active, and getting out and about. He was at the recent RGA convention in October – once again, his raffle bucket in hand.
He passed away aged 70 after a short stay in hospital, where he was receiving treatment for heart problems.
Keith’s family have asked for donations to the RGA, in lieu of flowers. Friends are welcome to attend the funeral, which is to be held at Morriston Crematorium, Swansea SA6 6BY at 11am on 24th February.
Our thoughts are with his family and friends at this time.
Pam Burnell and Steph Birch.
A leading charity for people with dwarfism has slammed a Leave.EU social media campaign – which showed a photo-shopped image of the House of Commons Speaker, John Bercow MP, as a dwarf about to be thrown by a group of men, with the banner and hashtag ‘Turf Out the Dwarf’ – as ‘disgraceful’ and ‘disablist’.
The image and slogan were tweeted by @Leave.EU, supposedly in response to Mr Bercow’s recent comments about US President Donald Trump speaking in Parliament.
A RGA UK spokesman said: “Whatever your politics, we hope most people would agree that using the term ‘dwarf’ as a slur and celebrating – as this picture does – acts of physical violence against people with dwarfism is disgraceful and disablist.
“This isn’t about ‘political correctness’; it’s about dwarfism still being an acceptable target for prejudice and abuse.
“It’s a sad reminder that we still have far to go, as a society.”
At the time of writing, the Tweet can still be seen on the @Leave.EU twitter feed.
Dear friends, members, and supporters,
It is with a heavy heart that we have to tell you one of our well-known and much-loved members, Keith Hopkins, has sadly passed on.
Keith was an integral part of our community and our charity, for which he generously volunteered – often running our annual raffle – for many years. He was a kind and gentle character, genuine and welcoming.
We have now had confirmation about Keith’s funeral, which will take place on February 24th 2017.
If you knew Keith well and you would like to attend, please contact Adelina at RGA UK for further details (email@example.com).
If you would like to, it was Keith’s family’s kind suggestion that friends and family donate to the RGA – instead of providing flowers.
His family have arranged for the funeral directors to handle donations, through Graham Sullivan Funeral Directors, Ty-Hedd Funeral Home, Myndd Garnllwyd Road, Morriston, Swansea, SA6 7QG.
RGA UK was close to Keith’s heart, as he was to ours. We will all miss him.
Please pass this information on to anyone you think would like to know.
We are sorry to have to share such sad news.
The team at RGA UK.
The RGA office will be closed from Thursday 22nd December 2016 to Thursday 5th January 2017. Happy holidays!
The RGA is currently working to produce a summary of important information that hospital staff need to be aware of when treating patients with dwarfism. Read More
For the 2015 Dwarfism Awareness Month, the RGA and the Child Growth Foundation (CGF) teamed up to raise awareness of the challenges that people with dwarfism face when shopping in supermarket stores.Read More
Strong and Mighty Max is a fantastic new picture book, that hopes to educate young children and their families about dwarfism. Read More
We are aware that proof of age is an issue that affects many of our members and so we have approached the team at CitizenCard, the most widely recognised and accepted ID card in the UK.Read More