Statement on Coronavirus from RGA medical board
During the current coronavirus pandemic it is essential that we all do our utmost to protect our own health and that of others. Everyone must follow the guidance that the government is issuing regularly. In particular it is important that people follow the guidance on regular hand washing and staying at home. We should only leave the house for essential shopping, for medical reasons or to attend work but only if this is essential and can’t be done from home. We can also go out for exercise once a day. We must stick to this as it is the thing which is most likely to reduce the length and severity of the pandemic.
We know that many RGA members are worried that being of restricted growth puts them at increased risk from coronavirus. If you are in a very high risk group you will already have been contacted by the government or your GP. Some of our members have breathing problems and may be at increased risk because of this. If you have concerns about this contact your GP or the doctor you normally see and they will be able to advise you. If they have particular concerns they can contact us on Medical@restrictedgrowth.co.uk. You can also contact us on that e-mail address, but it is important to talk to your own doctor first as they know you best. It may take us some time to reply to you as we are currently involved in responding to coronavirus in our own hospitals so if you have an urgent question talk to your doctor or call 111 and they will be able to advise you initially. Please also let us know by e-mail what is happening.
Most importantly at this time please look after yourselves and those around you. We will get through this but we will do that best if we care for one another in the coming weeks and months.
RGA medical advisory board.
Statement on the Achondroplasia Drug Trial Publication
The results of the Phase 2 trial into the drug, Vosoritide, that could reduce the health complications of children with Achondroplasia was published in the New England Journal of Medicine on Tuesday 18th June 2019.Read More
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…
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.
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