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Dwarfism, gaming, and the ‘butterfly-effect’ – a blog by Jacob Gould

My name is Jacob. I always introduce myself as a twenty-something software developer, gamer; who has a Christmas cracker sense of humour; a slight affinity for caffeine; and who just happens to have Achondroplasia.

I saw the RGA was running the #SpreadTheWord campaign – asking libraries and schools to stock books that show a positive image of dwarfism. I wanted to take part and contacted my old primary school to see if they’d welcome the books into their library. The current generation there would not have grown up with any real-life representation of dwarfism. They accepted my request and wanted me to revisit the school to deliver a presentation.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: Simon Minty, trainer, consultant, comedy producer.

In this, the third installment in our series of interviews with role models in the dwarfism community, we speak with Simon Minty, trainer, consultant, comedy producer. Read on…

Simon Minty

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

My name is Simon Minty and I live in London. I was born in Epsom in Surrey and moved to London when I went to University and stayed.

And what do you do?

I’m not very good at explaining this. I’m self-employed. I’m a trainer and consultant. I talk to large companies about employment and customers who have a disability. I also produce comedy with Abnormally Funny People. I currently co-host two podcasts, one for the BBC called Ouch and one with my friend and colleague Phil.

Do you enjoy it?

Yes, in the main. I get nervous when I have to make a big speech but I love it too. I enjoy being asked to go in to a BBC radio studio and talk. I really enjoy the comedy we make and perform. A good training course when I can see delegates get ‘it’ is hugely rewarding. I have travelled for my work and that’s been fantastic. But, I have to write tender documents, have to do long conference calls and always have some admin to do which I enjoy less.

How did you end up doing it?

I left school at 18 and worked for Barclays Bank until I was 25. I ran training courses for Barclays as well as advised small businesses. My manager told me about a consultancy that worked in disability. At the time, I wasn’t thrilled to be categorised but stored the information. After realising I wanted something different from banking, I took a sabbatical and back-packed around Australia and New Zealand. Whilst away, I had the chance to think about where I fit in the world, about being short and I decided to go to University. A fellow back-packer suggested I studied philosophy. At University I continued to explore my height, disability more broadly and then met up with the chap who ran the consultancy. I started running training courses for him and, well, here I am.

The comedy was a different route, a best friend from school was a comedian and I loved everything about it.

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

Phew, that’s a big question. I feel I had to do the things when I did to get to where I am now. I wonder if I’d stayed at the bank would I now be married with children, be mortgage free and living a different life?

What’s the best thing about your job?

Variety, freedom and the people. In the last few weeks I’ve been to Windsor Castle and the House of Lords, I recorded a show at the BBC, I spoke with a friend about writing a book, have been asked to do a talk in Hong Kong, and have written some comedy to pitch to Channel 4. I still have a mortgage though.

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

I’ve been lucky in that I don’t think I’ve had a truly terrible job. I even enjoyed my Saturday job when I was 15 working as a cashier for Bentalls department store. I used to baby sit for neighbours and loved that too.

A part of my job that I don’t like is how it makes me nervous. My anxiety before a big event can kick in a month before. A few years ago I was asked to talk at a huge government backed event and was a mess for weeks beforehand. I retched on the journey there. Waiting back stage I wanted to run away and decided there and then, I was never doing this again. Then I went on stage and loved it.

What are the best and worst aspects about being small?

How long have you got? I’m generally ok with it now, I’m well in to middle age. I can get affected if youngsters shout something horrible, or if someone clumsily leans over me. Being an ‘ambassador’, that is being polite when I don’t want to be, can be tiresome. Pain and discomfort aren’t welcome and increase as I get older. Romantically and emotionally it’s been tough sometimes. However, I do like being me. I wouldn’t have taken this path if I’d not been short. I love the people I’ve met, I also love the short person community even though I was a latecomer. Being short has opened more doors than it has closed.

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

Being short is part of you, don’t resent it nor obsess about it. Do what you want to do. Try and be nice. You will get a girlfriend.

Which living person do you most admire and why?

Argh, will you quit with these big questions? My answer does vary but right now, it would be my parents. They didn’t know what was coming (they are average sized as is my sister) and no one gave them any training so I’d say they’re pretty special.

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

Being self-employed and working in comedy means work and pleasure often overlap. I like theatre, travel, football, food, lie ins and socialising.

What’s your favourite book?

Two that affected me hugely at the time of reading are The Catcher in the Rye by J.D. Salinger and The Basketball Diaries by Jim Carroll. I love a bit of angst. I read The Woman in White by Wilkie Collins whilst at school and again later and was gripped.

What do you consider to be your greatest achievement?

These questions! Recently a friend sent me a twenty year old article in which I had been interviewed. In it I said I would be content when I saw a short person be in a soap opera and their height be irrelevant to them being there. This is happening now. I know a lot of people made this happen but I’m proud to have contributed.

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

Good company, could be serious but was also fun.

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.

RGA UK and ground-breaking children’s authors urge libraries to help combat dwarfism stereotypes

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.

Template emails, Tweets, and Facebook posts are available from the RGA UK website. Click here.

To find your local library visit https://www.gov.uk/local-library-services or http://www.findmylibrary.co.uk/.

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 office@restrictedgrowth.co.uk.

ENDS

Notes

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

Remembering the Raffle Man – Keith Hopkins (1946 – 2017)

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.