New Zealand families share their stories about welcoming a child with Down syndrome into their families.

 

 

By Coen Lammers  

Actors with Down syndrome are becoming a hot commodity with three young female actors starring in two movies and a play in recent months. 

Actors with Down syndrome are becoming a more regular feature on television and in movies, including Coronation Street, Shortland Street, and of course the current box office success Peanut Butter Falcon. 

In New Zealand, Libby Hunsdale from Whanganui has been filming the movie Poppy at the Kapiti Coast, Lily Harper filled the lead role in the theatre production Up Down Girl, while Amber Ranson features in the short film Peninisula which was planned to be featured at film festivals overseas. 

Like the Hollywood blockbuster Peanut Butter Falcon, the New Zealand productions mostly centre around life with Down syndrome and the hurdles other people are putting up to stop people with Down syndrome to chase their own dreams. 

Libby Hunsdale on the set of Poppy with Sebastian Hunter.

Libby Hunsdale was picked for the title role of Poppy after extensive casting by writer and director Linda Niccol. 

Niccol said that the 18-year-old was “a real find”.  “She embodies the spirit of Poppy. She is a true performer.” 

Finding the right actress for the role was challenging because the actor had to be able to drive a car.  

Poppy is a New Zealand film about a young woman with Down syndrome who wants to become a motor mechanicstarting with the apprenticeship that was promised her by her late father.  But Dave, her super-protective brother, who has reluctantly taken over the family garage is far from encouraging.  

It is not until she teams up with a former school friend who needs his car fixed in time enter the local burnout competition that her plans progress. 

On the film set, Libby is supported by Sydney-based New Zealander Ari Boyland and another newcomer, Sebastian Hunter.  

Producer Robin Laing said that it had been a steep learning curve for Libby who hapreviously acted in school productions. “But she has taken on the challenge with great courage and enthusiasm. 

In an interview with the New Zealand Herald, Libby said that she could relate to Poppy because she is ambitious and wants a career. “And I do too.” 

 Poppy doesn’t care about what people think of her and the fact she has Down syndrome. I really relate to Poppy. We could be sisters.” 

The film was shot on the Kapiti Coast and is expected to be released in October/November.  

The production received funding from the Film Commission’s 125 Fund, in commemoration of women’s suffrage in New Zealand, from TVNZ which will screen the film on prime-time television, as well as several other philanthropic supporters. 

Amber Randon on the set of Peninsula.

Another actress to soon feature at movie theatres in New Zealand is Amber Randon from Rakaia, south of Christchurch, who filled the lead role in the short film Peninsula. 

The short-film was written by Fiona McKenzie and filmed in Banks Peninsula last year, and was set to feature at overseas film festivals this year before it will be released in New Zealand in spring. 

McKenzie had worked with Amber in acting classes and said she had written the story with Amber in mind. 

“​Amber’s a strong performer and a strong character. I knew she was a strong enough person to enter a film set without blanching,” McKenzie told Stuff. 

“Also, when people see Amber in this film they’ll think it’s a film about Down syndrome, which it’s not. I am so over these things having to be about disability just because people involved are disabled. Can’t we move on?” 

Amber’s boisterous persona and sense of humour lit up the movie set and she said the film was “a piece of cake”. 

“In one scene my character had to be dancing, so the crew put on Thunderstruck by AC/DC – one of my favourites. I busted the moves out and then off camera the whole crew was dancing with me.” 

Lily Harper in full flight.

Another actor to steal the heart of her colleagues and the audience was Palmerston North’s Lily Harper who received rave reviews for her lead role in the stage play Up Down Girl. 

The play was originally written as Up Down Boy by UK-director Sue Shields, but adapted for New Zealand by Nathan Mudge who had worked with Lily on other projects. 

The play focuses on the main character Mattie and her interactions with her mother who is played by Trudy Pearson, as they are trying to prepare for Mattie to go to college. 

The reviewer for Stuff said that Pearson carried most of the dialogue but that Lily ”stole the spotlight”. 

Lily is a born performer and has already presented for Attitude TV and also features in the World Down Syndrome Day video message.  

Up Down Girl however was her first stage play, but drawing on her own experiences as a person with Down syndrome, Lily nailed the performance and according to the reviewer there was not a dry eye in the house. 

 

By Diane Burnett 

To celebrate her beautiful baby girl Paige and World Down Syndrome Day 2020, Dawn Goddard had an inky idea.

Dawn wanted to get as many people as she can to get the world-renowned ‘the lucky few’ tattoo on 21st March, World Down Syndrome Day 2020.

Over 50 people from across country from the New Zealand Group for Parents of Children with Down Syndrome Facebook group showed an interest.

Off the back of this interest, Dawn contacted and organised quotes from a few tattoo studios and has confirmed that Aaron V, co-owner of the family owned private tattoo studio 2 Sparrows Tattoo in Pakuranga, has kindly offered to donate his time for free and change only $50 per ‘the lucky few’ tattoo to cover the cost of the materials required.

“The minimum cost for most tattoos nowadays is $150 plus, so this is amazing,” says Dawn.

Dawn, a photographer, also photographed the event and hoped to get the media involved to create a fun news story to raise awareness of Down syndrome for World Down Syndrome Day 2020.

The original idea and design started in the United States where Mica May, a designer, had an idea to celebrate being a parent of a child with Down syndrome by designing a special tattoo for #theluckyfew.

She shared her idea with several other mums at their first gathering, having previously only met online. Their connection was immediate, and they discussed getting matching tattoos to acknowledge their bond.

At that point Mica spoke up and told them about the reoccurring dream she’d been having for a long time.

 

In the dream, she wakes up with three black arrows on her arm – always the same design and always the same placement. As she described the design from her dreams, tears started rolling down the faces of the other mums, and everyone said “Yes! This is our design”.

The three arrows are the perfect symbol for parents of children with Down syndrome, because the number three is representative of the three 21st chromosomes that result in Down syndrome and the arrows represent how the parents of these special children rise up and move forward.

“We rise the highest after we’ve been pulled back and stretched — sometimes even more than we think we can bear,” says Mica May.

The group tested the design on themselves that evening using a pen and decided to all get the tattoo the next day. But what started as a bonding moment for a small group of friends has grown to include hundreds of other parents from all over the world.

Last year, in Newquay in the UK, thirty parents joined the global campaign to raise awareness of people with Down syndrome. Each got ‘the lucky few’ tattoo to show how proud they are of their children and siblings with Down syndrome, and a person with Down syndrome also got the tattoo along with her mother and sister.

Dawn contacted one of the organisers of this event and got the details for the original designer, Mica May, who she contacted. “She has given us her blessing to use the design,” says an excited Dawn.

 

 

We Decide.

That is the message people with Down syndrome want New Zealanders to hear loud and clear.

Far too often people with Down syndrome have their decisions made for them, even when they are very capable of making their own choices.

In many cases they are not consulted over the hundreds of small decisions made each day or even the big, life-changing decisions.

“Those decisions make us who we are, but the reality for many people with Down syndrome is that other people are making small as well as significant decisions for them,” Zandra Vaccarino, National Executive Officer of the New Zealand Down Syndrome Association (NZDSA).

Imagine if someone decided when you get up, what you eat, where you go to school, what you do with your money, who your friends are and even the romances you have. For most of us that would be impossible to imagine but for many people with Down syndrome this is their daily reality.

“Often with best intentions these decisions are made by others, but this year we want to remind all of New Zealand to support people with Down syndrome to make their own decisions,” says Vaccarino.

Saturday, March 21 is World Down Syndrome Day (WDSD) and the NZDSA has launched a special #WeDecide video message from its own members to explain how important it is to make their own choices.

In the clip, Lily talks about becoming an actress, Rachel and Vincenzo talk about getting married, Abigail talks about her career in media while Alec and Jessica proudly explain how they bought a house.

Disability Rights Commissioner Paula Tesoriero highlights that 34.9 per cent of people with Down syndrome are not in education, training or employment and asks New Zealanders to consider how their actions can help change those statistics.

“A child deserves the right to decide what a good life looks like, just like all of us,” says the commissioner.

The #WeDecide video is one of thousands of initiatives and special events around New Zealand and around the world to raise awareness for Down syndrome and to promote the global “We Decide” message.

In New Zealand, local groups have organised gatherings in their own community, but unfortunately some had to be cancelled because of Covid-19.

Hundreds of schools around the country have also embraced the “Odd Socks” campaign in which students wear non-matching socks to demonstrate that we are all different and to fundraise for their local Down syndrome community.

“These events are growing every year and this shows there is an increasing involvement by local schools and communities,” says Vaccarino.

“And of course, World Down Syndrome Day is a special day for our families and whānau to get together, connect and celebrate the amazing feats our people with Down syndrome have achieved.”

 

You can download the video here

 

 

By Andrew Oswin

I attended the Unforgetaball 2019 at the Hornby Working Men’s Club.

It is for families and friends of people with intellectual disabilities. It is about networking with other families and friends, having fun, dancing, singing, and having fun.

Everyone all got dressed up all in their finery and had many photo opportunities.

We welcomed back a band called, ‘Girl From Mars’, who once again played and sang for us at the ball.

I had many dances with a number of lovely ladies and I got to dance to I Want To Break Free, Updown Funky Monkey, Tonight Is Going To Be A Good Night and one of my favourite songs Mamma Mia.

A light supper got provided and the caterers brought the food out to the tables so that everyone could help themselves.

I would like to take this opportunity to thank the organisers Linda Te Kaat and Tania Grose for organising the Unforgetaball once again, which is one of the highlights for the year, as well as the decorators and photographers, the Hornby Working Men’s Club Sports Hall Staff for hiring the venue, the band Girl From Mars and a very special thank to everyone who attended.

I really enjoyed it!

By Edward Borkin

I recently attended a meeting which will help form questions in a survey.

The survey will be about people’s attitudes towards people with disabilities in New Zealand. There were people with many different disabilities and we all shared our personal experiences.

I went to the meeting to speak on behalf of people with Down syndrome. The message I wanted to share was “include us”.

I talked about how I was included by my old high school to open a new school gymnasium. This is because I won a gold medal at the World Summer Games in Greece. There were other athletes who opened the gymnasium with me such as Olympic medallist Bruce Kendall.

Another hot topic was around the support which people with disabilities receive.

We all came to the conclusion that the more support people with disabilities receive, the more they will achieve and succeed in the community. This increases positive attitudes towards people with disabilities.

I talked about the support I received from my job coach. This support has allowed me to be an employee at Pak’n Save since 2001.

My final message is that people with disabilities are good people and have value in the community. We need to speak up to be heard, respected and reach our full potential.

 

To celebrate its 51st anniversary last July, Special Olympics International organised a host of events and activities focused on Unified Sports.

In Unified Sports, Special Olympians compete alongside and against people with and without intellectual disabilities.

Special Olympics New Zealand celebrated the Special Olympics Global Day of Inclusion with an exhibition football match in Christchurch on July 21,

The New Zealand World Summer Games Unified football team took on an invitational team made up of local athletes and Christchurch City councillors on the famous cricket pitch at Hagley Oval.

The match featured on TVNZ’s Seven Sharp programme and Frank Walmsley explained that as a unified partner in the team, he is part of the team, and not a coach.

“We’re there to play with the team, be part of the team. We make sure that everybody’s getting passed to, keeping their heads up when they go a goal behind. Just there to support the others,” said Walmsley.

Special Olympics NZ Chief Executive Carolyn Young said that unified sport creates great opportunities for people to connect. “And we really saw that at the Christchurch match.”

“The match provided an opportunity to showcase the benefits of making connections with a broader range of people in our community and demonstrates that we are better together.”

Both teams had great fun and put in an amazing performance. At the end of the day the World Summer Games team came out on top with a 1-0 win.

If you want to see the action on Seven Sharp, please follow this link.

https://www.tvnz.co.nz/one-news/sport/other/unified-football-team-mixed-special-needs-athletes-competing-alongside-those-without

By Joanne Holden

After four years as “camp mother” keeping the Roncalli College girls’ rugby team hydrated, a Timaru 16-year-old with Down syndrome has made her debut on the field.

Meghan Phillips burst into tears when her mother told her she would be donning yellow and blue stripes for the final five minutes of an hour-long match against visiting school Prebbleton on Friday.

“I’m a wee bit nervous,” Meghan said, ahead of the 3pm game.

While the Roncalli College Year 12 student was “rugby-mad”, she had only ever played the sport with her brother – so she enjoyed her first time practising and warming up with a team.

“I like playing rugby with all the girls.”

The Roncalli College and Prebbleton school girls 1st XV teams after their match. Photos: Bejon Haswell/Timaru Herald.

Although her team lost, Meghan scored the game’s final try – ploughing through half a field of opponents to ground the ball.

Meghan also got a shock when she learned her father and brother had travelled from Christchurch to watch her big moment, and sprinted over to them for a reunion after the game.

Roncalli girls coach Brad Sandri said Meghan had been getting water to the players and tees to the kickers since starting at the school four years ago, and was “a bit of a general camp mother”.

“She keeps everyone sorted. They’re never thirsty,” Sandri said.

Copyright: Stuff

Meghan Phillips, 16 has been a passionate supporter of the Roncalli College girls 1st XV for 3 years.

My parents and I went on the plane from Christchurch to Auckland to go to see Adam Lambert and Queen. We stayed in an apartment and I had a room all to myself with a TV in it as well. Before we went to the concert we went into the restaurant for dinner and I had a burger for my meal.

Rochelle at the Queen Concert

After that we walked to the Spark Arena to see the concert and it was amazing with all the special effects and I sang and danced all night. Adam Lambert was very good at the concert. He sang the Queen songs brilliant and Queen were really good as well. I had the best experience at the concert because it was fun and I really enjoyed it and I knew all the songs.

From
Rochelle Waters

Fifteen models with intellectual disabilities walked the catwalk at New Zealand Fashion Week recently as part of The Living Colour show, celebrating diversity.

They wore local designers from Zambesi to Kate Sylvester in New Zealand’s biggest showcase.

“I’m very excited,” one model told One News.

“I feel nervous I guess about catwalking but I am relaxing now,” another said.

After the show, there was a dance party for three hundred guests.

The show was organised by Dance For Abilities which is a not-for-profit organisation set up to give people with intellectual disabilities the opportunity to have a night out.

Founders Jonathan and Daniel Hopkirk were inspired by their sister Rosa, who was born with Down syndrome.

“We’d often go out, where there was often that barrier for her where that didn’t happen. So effectively this kind of creates that opportunity for people like Rosa to experience what we experience on a day to day basis,” Daniel said.

“Missy Boo, as her nickname is, or Rosa… we basically think she’s the Queen of sass so she runs the cutter at home. She keeps us honest,” Jonathan says.

Designers have welcomed the show to the fashion world.

Brittany Cosgrove from Nope Sisters Clothing says the show is usually known as not being very inclusive.

“It’s sort of known for being very exclusive and high-end… so it’s really good to see some actual changes being made.”

“It just knocks down a lot of barriers and a lot of walls to people’s perspectives on what they think disability might be,” Daniel added.

Copyright: TVNZ