Amber Ranson and her fellow cast from the short film Peninsula, will soon be shining on the silver screens of New York City when the New Zealand production makes its official world premiere at the high-profile Tribeca film festival.

Producer Scott Flyger said the team was “thrilled” that Peninsula on Friday was officially selected in the shorts category of Tribeca’s 20th anniversary festival, which runs from June 9 -20.

“For an independent film of modest means to be selected by one of the world’s top tier festivals is no mean feat,” says Flyger.

The short-film was written by Fiona McKenzie and filmed in Banks Peninsula in 2019, and was set to feature at overseas film festivals last year, which had to had to be delayed due to Covid.

“Our cast, crew and supporters are very much part of this little film’s success and Fiona and myself thank you all,” says Flyger

McKenzie had worked with Amber from Rakaia, south of Christchurch, 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 said in an interview last year after filming was completed.

“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.”

 

 

The New Zealand Down Syndrome Association (NZDSA) is applauding the Government’s decision that will allow people with Down syndrome to get access to their Kiwisaver before 65 years.

Minister of Commerce and Consumer Affairs, David Clark yesterday announced the variety of conditions under the new KiwiSaver withdrawal category, which also includes cerebral palsy, Huntington’s disease and fetal alcohol spectrum disorder.

NZDSA President Kim Porthouse says that this decision is a victory for the rights of the disabled. This common-sense decision  gives working people with Down syndrome the opportunity to enjoy their hard-earned Kiwisaver when they are still fit to do so.

“Whilst the life expectancy of an average person with Down syndrome is increasing each year, it is currently between 50 and 60 years meaning many  are not able to wait until 65 to start their retirement, so this decision allows people with life-shortening conditions to enjoy their Kiwisaver when they are ready.”

Mrs Porthouse says the New Zealand disability sector owes a huge deal of gratitude to Tim Fairhall and his mother Joan who convinced Parliament to introduce Kiwisaver exemptions for people with certain conditions.

“Tim is an inspiration to everyone in the Down syndrome and wider disability community for his vision and bravery and I can hardly express how proud and thankful we all are for Tim and Joan for bringing this injustice to the attention of the Government,” says Mrs Porthouse.

Tim confronted the Select Committee in 2019, with the support of IHC and Dr Claire Matthews from Massey’s Business School to argue how the old withdrawal rules disadvantaged people like him.

Mrs Porthouse says that the Kiwisaver decision is a significant step towards equality for people with disabilities  to enjoy the same quality and benefits of life as other New Zealanders.

“While we celebrate today, there are still plenty of other issues we need to address to remove the barriers that stop people with disabilities enjoying a full and good life,” says Mrs Porthouse.

“As long as people like Tim and others in our community keep challenging these barriers, we can create a community that is truly inclusive.”

For more information please contact NZDSA Communications Advisor Coen Lammers on 021-730239

Each edition, CHAT 21 focuses on one region and this time JO MORRISON from the Northland Down Syndrome Support Group tells us about what’s happening in the Far North. 

Since its inception in the 1990s, Northland Down Syndrome Support Group’s kaupapa has been able to fill the gaps and meet the needs of people with Down syndrome and their whānau across Tai Tokerau/Northland.   

Started by parents who wanted to connect themselves and their families with others in similar situations, the group has grown over the decades. Those original children are now in their late twenties and thirties; they and their families are now experienced guides for the new whānau who join our community each year. 

After many years as a charity, Northland Down Syndrome Support Group became a charitable trust in 2017.  Its Board of Trustees currently comprises four mums who organise and run all events and activities as unpaid volunteers.   

Our Chairperson and NZDSA Committee Representative is Bev Smith. She is part of the community nursing service and mum to Erin who has Down syndrome who is in her 30s, works for Northland DHB and is a member of STRIVE.   

Our Secretary and Coordinator is Kathryn Sadgrove. She has a background in transition and advocacyand a strong voice on consumer panels for Northland DHB.  Her son, Thomas, has Down syndrome and is in his late 20s and loves to go fishing.  

Social group GreatM8s celebrating St Patricks Day in Northland.

Jo Morrison is Treasurer and Education Adviser.  She has a background as a secondary school teacher and senior leader and recently completed a Master of Education exploring how children with Down syndrome are being supported in a small number of mainstream Northland schools.  Her daughter, Lucy, has Down syndromeis seven years old and attends her local primary school.   

Fiona Rowse is our fourth trustee.  She also has a background as a secondary school teacher and is currently a guidance counsellor.  Her daughter, Freedom, has Down syndrome.  Now in her 30s, Freedom lives independently and contributes her voice to youth councils in the Whangārei area.   

We also have three Officers of the Trust: Erin and Freedom, plus Karen Tucker who has served on the committee since its inception, holding the role of Treasurer for over a decade.  She is mum to Daniel, now in his twenties, who loves to sing and has his own very definite sense of style (as those of you who know him can attest!) 

  

Arlo at Flipout.

To fill the gaps and meet the needs, Northland Down Syndrome Support Group provides regular activities and events to support the growth of our community and the building of a sense of belonging within its members. 

From the birth (or even at pre-birth diagnosis) of a new baby with Down syndrome, Kathryn is available to welcome, support and offer a listening ear and reassurance to families.  When they are ready, she connects them up with other parents/carers of babies or young children with Down syndrome in their area to facilitate mutual support.   

We run two monthly activities that children with Down syndrome, their siblings and whānau can attend.  On the first Sunday of each month, we spend an hour together at FlipOut Whangārei.   

Lucy and big sister Eva at WAG.

On the third Sunday of each month, we go to Whangārei Academy of Gymnastics for an hour of gym fun followed by a shared kai.  Both of these activities are free of charge and we are incredibly grateful for the supports and discounted rates we receive from these two venues. 

Adolescents and adults can also attend the FlipOut sessions and also have their own social club, GreatM8s.  This is a group for people with Down syndrome and other intellectual disabilities and has been going for many years.   

They have their own Facebook group and meet fortnightly for crafts, movies, ten pin bowling and meals out.  Sometimes they have visiting speakers; recently they met with Emily Henderson, Whangārei’s new MP! 

GreatM8s meet local MP Emily Henderson.

We also support our children and young people with Down syndrome at school by providing professional development workshops at the beginning of each year to teaching staff across the region.   

Working in close partnership with local Ministry of Education Learning Support teams, we have trained over a hundred teachers, teacher aides, and SENCOs in Kaitaia, Kaikohe, and Whangārei over the last three years. 

The population of Tai Tokerau/Northland is widespread, making it a real challenge for our families from further afield to meet up.   

With this in mind, we have a very active Facebook group that keeps us all connected and we run two annual events that encourage our Down syndrome community of all ages to get together.  These are the Christmas Party and the Hātea Loop Walk in Whangārei for World Down Syndrome Day.  

Karen and Daniel Tucker at the Hatea Loop Walk during WDSD 2019.

For the last two years, the Christmas Party has been held at Tikipunga High School Hall, with a barbecue lunch provided by Rapid Relief Team, and entertainment and hands-on activities provided by Circus Kumerani.  Santa visits too!   

So, we all leave at the end with a gift for the children, a nice full tummy, and a big smile.  

The Hātea Loop Walk to celebrate WDSD was first held in 2019 and attended by over 230 people.  A number of local businesses supported us by providing refreshments and prizes.   

Sadly, due to lockdown, the 2020 walk was cancelled.  Instead, we took WDSD2020 online and shared photos of ourselves dressed up on our Facebook group page and raised money through an online auction. We’re hoping to be back walking the Loop again to celebrate WDSD2021!  

We couldn’t do any of this work without our small team of hardworking volunteers, the funding provided by COGS and Lottery Communities, and all the local businesses who support our activities and events.  

Thank you, all of you!! 

Several players with Down syndrome recently featured in New Zealand’s first fully disabled rugby team in Christchurch.

The team is called Polar Bears and is part of High Schools Old Boys’ and an international organisation called Tri Trust Rugby.

The team has 20 players with intellectual and/or physical disabilities and are aged between 12 and 40.

After months of training, the players were buzzing to take the field, along with ‘enablers’ who helped facilitate the game to get everyone involved.

The team’s ultimate goal is to have other teams to play against domestically, and one day internationally.

The STRIVE self-advocacy team had another busy year and even the  lockdown could not stop their work.

STRIVE is a team of people with Down Syndrome who are a members advisory and leadership group who advise and support the New Zealand Down Syndrome Association board, and are ambassadors and advocates for people with Down Syndrome.

Judging by the STRIVE report to the AGM recently, the STRIVE team has developed its skills and influence significantly during 2019-2020.

The team regularly meets for Funshop, which are workshops with different topics, where guest speakers share their expertise with the young ambassadors.

The past year, the meetings covered Research, Advocacy, Writing Reports, Tips for Public Speaking and developing a Succession Plan.

This final subject is particularly important as some of the STRIVE team have been in their role for several years, and may want a change, while it is also important to get new people involved with fresh energy and ideas.

Once Covid 19 started affecting our day to day lives and New Zealand went into lockdown, the STRIVE team started using Zoom meetings.

The group got together on eight occasions between April and June to share their Covid 19 experiences and continue their other work.

Aside from sharing ideas with each other, the group has been very active in the wider community on behalf of the NZDSA.

Andrew Oswin attended the Disability Consumer Consortium in Wellington, Edward Borkin presented to Auckland Timber Industry as well as the Auckland Success in Schools workshops, Erin Smith was a Support Buddy on the Youth Development Camp and Andrew presented at a meeting of Down Syndrome Australia.

The group worked with the Health And Disability Commission on the script for digital resources to help people with disabilities, in which Duncan Armstrong featured as the lead actor.

On the international stage, STRIVE was part of the a feedback group for the Down Syndrome International research on Covid 19, as well being part of a disabled person-led monitoring programme  in Health and Wellbeing by the Donald Beasley Institute.

The STRIVE members have made huge progress as a group but are also proud of the successes they have enjoyed individually.

“On the 13th October 2020 I received and Achievement Award for the outstanding artistic achievement from Arts Access Aotearoa,” said Duncan Armstrong.

“I am taking up a leadership role in the kapa haka group in Invercargill and will be performing alongside other people with Down syndrome from the Invercargill Down Syndrome Group,” said Alexandra Hewitt.

Edward Borkin said will be going flatting which is a goal he has had before he even joined STRIVE, while Caroline Quick is a member of the EGL regional leadership group in Christchurch as one of three disabled representatives.

Caroline is also a member of the Disability Advisory Group for the Christchurch City Council, for which she is paid  a meeting fee.

In the far north,  Erin Smith is a youth leader in the Great Mates Social group.

“I am still a member of the Northlands DSA committee and I continue to enjoy my dance classes.  I have done training workshops at work and I am helping with the induction training at work and doing meet and greets,” says Erin.

Andrew Oswin said he really enjoys being a self-advocate and a member of STRIVE.

“I am happy and privileged and to have made a commitment of service to the Down syndrome community and country of New Zealand.”

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!