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The NZDSA’s Self-Advocacy Leadership and Advisory Group, STRIVE, met in Wellington on June 19-20 to focus on gaining more self-advocacy and leadership skills.

While some may think a Funshop is all about fun, Funshops are really about allowing our self-advocates to do lots of important work and gain new skills in a fun and engaging way.

The Funshops are actioned packed and run for a full day, from 9 am until 5 pm.

The focus of all the Funshops is learning more about the United Nations Conventions on the Rights of Persons with Disabilities, and the skills the self-advocates need to share this information with their peers or to advocate for others.

The key focus this weekend was learning more about Article 25, which recognises that people with disabilities have the right to the enjoyment of the highest attainable standard of health without discrimination on the basis of disability.

The group also spent time on Article 27 which recognises the right of persons with disabilities to work, on an equal basis with others; this includes the right to the opportunity to gain a living by work freely chosen or accepted in a labour market and work environment that is open, inclusive and accessible to persons with disabilities.

The self-advocates are in the process of developing their Declaration on Employment.

To explore and discuss these rights further they\ group met with Brian Coffery, Director of Office of Disability, Paula Tesoriero, Disability Rights Commissioner and  Sarah Fuhrer‐ Advisor, Disability. Office of the Health and Disability Commissioner.

The weekend also included work on a piece of research that STRIVE have conducted, learning more about interviewing and presentations skills.

Paula Tesoriero with STRIVE and the Self-Advocates

Everyone had a wonderful time.

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The New Zealand Down Syndrome Association is extremely proud of Michael Holdsworth becoming a member of the New Zealand Order of Merit in this week’s Queen’s Birthday Honours.
The NZDSA believes Michael is the first person with Down syndrome in New Zealand to receive this kind of honour.
Michael was recognised for his decades of work for Special Olympics and his advocacy work for full inclusion of people with Down syndrome in their community in New Zealand.
NZDSA President Kim Porthouse says that Michael has been a trailblazer for people with Down syndrome, both during his education in mainstream schools and his employment with IHC.
“Michael has been a great role model and has helped to remove a lot of barriers for people with Down syndrome,” says Ms Porthouse,
“Aside from that, he is also an accomplished musician and his piano performances have been a regular feature during the NZDSA National Achievement Awards at Government House,” says Ms Porthouse, adding that Michael himself was a recipient of the National Achievement Award in 2012.


“Every person with Down syndrome and their families in New Zealand will be extremely proud of Michael’s achievements and it is wonderful to see this recognised in the Queen’s Birthday honours.”
Michael represented New Zealand at the World Down Syndrome Conference in Dublin, Ireland, in 2009 to share his story of advocacy and inclusion.
He has been involved with Special Olympics for 32 years, as an athlete, advocate and as a Global Ambassador, and has been working for IHC in the library for almost 27 years, being the helpful voice at the end of line for people looking for resources.
The Special Olympics swimmer and skier says he is very honoured.
“With all the years of Special Olympics it has been the best thing of my sport,” he says.
The NZDSA President says that Michael is yet another example of the amazing things people with Down syndrome can achieve.
“More and more people and organisations are starting to realise what people with Down syndrome are capable off and what a great asset they are to their community.
“Michael has been one of the trailblazers and we are excited to see so many other young people following his footsteps.”

The New Zealand Down Syndrome Association congratulates Andrew Oswin for joining the co-design team for Project Mobilise.Project Mobilise was launched recently by the Human Rights Commission to inspire social change.

Over the next few months, Project Mobilise will be working hard to understand attitudes surrounding disability – the stories, beliefs, and assumptions held by New Zealanders.

The project team aims to create a media campaign based on these insights to help people think differently about disability.
Andrew Oswin has been part of the leadership team of the NZSDA self-advocacy group STRIVE for many years.

He has also been an eloquent and passionate advocate for New Zealand people with Down syndrome on many national and international advisory groups.

NZDSA National Executive Officer Zandra Vaccarino has congratulated the Disability Rights Commissioner Paula Tesoriero for this much-needed initiative to shift and change attitudes towards disability in Aotearoa.

“The NZDSA will be supporting and promoting Project Mobilise as we believe that changing attitudes is crucial for addressing discrimination, so that all people with Down syndrome can enjoy the same rights as all citizens of New Zealand,” says Mrs Vaccarino.

“The NZDSA believes a national media campaign is vital to help people think differently about disability and to celebrate diversity,” says Vaccarino.

She adds that Project Mobilise will create the space for all New Zealanders to reflect on their attitudes and to consider how we might contribute to dismantling barriers that disable people from having full access to their community.

To disrupt harmful narratives and help New Zealanders view disability in an entirely new way
the Human Rights Commission is working with creative agency Curative to better understand the stories, beliefs, and assumptions held by New Zealanders about disabled people and co-design a national campaign strategy to change those attitudes.

Project Mobilise is anchored in co-design, a human rights framework, and Te Tiriti o Waitangi.
The project aims will share power, enable authentic participation, prioritise relationships, and centre the perspectives and realities of disabled people.
Project Mobilise is working collaboratively with the disability sector, and wants the disability community to be a part of Project Mobilise.

Visit www.projectmobilise.co.nz to learn more and find out how you can take part.

 

A time-defying team of Special Olympics footballers from Hawke’s Bay this  is set to qualify for an incredible eighth National Summer Games.

The Hawke’s Bay football team – with players ranging from 71-year old Danny Dromgool to 9-year-old Dominic Hoskins – have been a regular feature at the National Games for longer than most can remember.

The National Summer Games are the four-yearly pinnacle event for Special Olympics New Zealand with nearly 2000 athletes and coaches from all corners of the country expected to compete across 11 sports at eight venues in Hamilton.

Zac Drake in full flight for Hawke’s Bay.

Coach Jack Lowe has lost count how many National Games the squad has attended ever since Shayne Crabtree and himself put their hands up to help out a few youngsters with intellectual disabilities who wanted to play football, now close to 30 years ago.

“I am not sure we if we are the longest running team in the country, but we are definitely the happiest,” says Jack who had no other involvement in football and never planned to dedicate half his life to Special Olympics.

“But once you put your hand up for Special Olympics, you seem to be part of it until you die. The athletes rely so much on you and become such a big part of your life,” says Jack, who has enjoyed every minute of it.

The Hawke’s Bay team this weekend competes at the regional Special Olympics football tournament in Manawatu to ensure all the players have officially qualified to compete in Hamilton in December.

Jack rattles off endless heart-warming tales about his team competing around New Zealand and Australia, including one Trans-Tasman event in which his team struggled to score.

“We were badly losing each game, but nobody cared. One game we finally got close to scoring, but our striker’s bootlaces came loose.

“Instead of stopping the ball, the Victorian goalkeeper bend down to do up our player’s laces. But even with the goalkeeper busy with the laces, we still couldn’t score. That was a classic Special Olympics moment.”

The coaches are clearly hooked on the joy their players get from the game and the unique moments Special Olympics events provide.

And they are not afraid to push the boundaries, trying to find a place for any player, whatever their disability.

“A few years ago, one new player insisted he wanted to be in goal, but when he walked onto the field, we realised he was blind. Every time the ball hit him he’d would ask if he had saved it.

“Unfortunately he started to get a bit angry every time the ball hit him too hard, so we had to try someone else,” says Jack, who has a daughter swimming in Special Olympics, but because of his footballing commitments he has not seen her compete for eight years.

Jack says his charges can’t wait to get to Hamilton and reconnect with the close friends they have made competing around the country.

“When the teams get together it is hugs and high-fives all around when they see old friends, old girlfriends or former boyfriends.

“The National Games are very social and some athletes are convinced they hook up with three or four new girlfriends in that one week,” laughs Jack, who along with Shayne is slowly thinking about retiring from coaching and has started to bring in some younger coaching talent.

“My favourite moment? When they get off the bus after a three-hour bus ride and they are all very tired, but still all make sure they thank you for coaching them.”

My name is Edward Borkin and I have always lived with Mum and Dad, but I was independent when they went away.

I have been working at Pak n Save Botany for the last 19 years as a trolley boy.

I am also a member of STRIVE which consists of members with Down syndrome who help to advocate for people with disabilities. I enjoy being part of it and helping others with disabilities.

Another thing that I am involved with is Special Olympics. I participate in ten-pin bowling, swimming and table tennis.

I have recently moved into a flat with David, he has a disability too. We get on like a house on fire!

We share the chores and help each other. We also share some of the same interests like Coronation Street and music.

I have a support worker and try to be as independent as possible. I do need some help with cooking as it’s not really my forte.

I’m learning to catch the bus to work which will help me to be even more independent.

I’m really enjoying flatting!

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

Auckland airport was filled last week with mixed emotions when  14 young adults and their parents prepared to board their flights back to all corners of the country after completing the annual NZDSA Youth Camp.

The participants and their supporters were still buzzing from their amazing experiences during the three-day camp in Long Bay, north of Auckland, but also shed a tear as they had to say farewell to all the new friends they had made.

The annual weekend is one of the highlights on the NZDSA calendar where young adults from all regions in the country are nominated by their local groups to be invited to this fully funded camp of fun, action, laughter and great food.

The change in the mood of the group and the interactions between the young people and their carers between arrival and departure was incredible to witness.

When the group first gathered on the Friday, most participants were understandably shy and nervous of what they could expect.

Some had never been on a plane, and some had never spent night away from their parents, as the young people each got their own room at the beautiful Vaughn Park, looking out over Long Bay beach.

The parents stayed nearby in another house on the same property, but for some participants even that small separation was a big step in growing their independence.

After the first introductions and getting familiar with their new surroundings the young adults were driven to Xtreme Entertainment where they proved to be extremely competitive in their ten-pin bowling and barely had time to eat the pizza on offer.

The Saturdays are traditionally action-packed at the Sir Peter Black Maritime Education and Recreation Centre (MERC) where the wonderful instructors gently guided the young people through the first steps of rock climbing and abseiling.

Some of the young people were clearly not impressed by what was lying ahead but all showed incredibly courage as every participant conquered their fear of heights and abseiled the intimidating wall.

The rock climbing proved to be a bit more challenging but again all participants gave it a real go and many of them managed to reach the top of the wall.

All that activity had created a real hunger, but the Rapid Response Team were there to the rescue and feed the crew a much appreciated lunch of burgers and chips.

In the afternoon, the MERC instructors brought out the archery gear and the participants showed a real knack of hitting the target. For many of them it was the first time they had handled a bow, and they all enjoyed learning this exciting new skill.

After a well-deserved rest, the youngsters dressed up for a beautiful dinner prepared by the Vaughn Park staff,  but any extra kilos were quickly worked off when the dining room was turned into a dance floor. The crew particularly enjoyed songs from Mamma Mia and Grease, but all showed their unique dancing styles with a variety of music.

A slightly jaded group arrived at breakfast on Sunday, before heading into an art session to reflect on the weekend and about the new things they had learned.

Several of the parents also commented about their own personal development and how impressed they were with their children trying new things and showing more independence than they had expected.

Most caretakers vowed to use the new lessons to let their children become more independent.

The weekend created some wonderful new friendships and many exchanged details to stay in touch.

The NZDSA Youth Camp is a unique opportunity to learn, for parents and their offspring, and build new networks.

If you are interested in attending at the next camp in late 2021, contact your local NZDSA representative and put your name forward.