Launching at the Tokyo 2020 Paralympic Games, WeThe15 plans to initiate change over the next decade by bringing together the biggest coalition ever of international organisations from the world of sport, human rights, policy, communications, business, arts and entertainment.

At a time when diversity and inclusion are hot topics, the 15% who have a disability want effective change to remove the inequality and inactivity. Like race, gender and sexual orientation, we want to have a movement all persons with disabilities can rally behind. A global movement that is publicly campaigning for disability visibility, inclusion and accessibility.

WeThe15 will shine a light on 15% of the world’s population. It will build greater knowledge of the barriers and discrimination persons with disabilities face on a daily basis at all levels of society. By doing so we will break down these barriers so all persons with disabilities can fulfil their potential and be active and visible members of an inclusive society.

For more information go to: www.wethe15.org

 

 

Rochelle Waters recently received the NZDSA National Achievement Award from Rt Hon Governor-General Dame Patsy Reddy. She was nominated by the Canterbury Special Olympics administrator Helen Mitchell, who describes how Special Olympics are just part of Rochelle’s terrific list of achievements.

I would like to nominate Rochelle Waters for the NZDSA 2020 National Achievement Awards.

I know Rochelle through her involvement with Special Olympics and am amazed at what Rochelle has achieved throughout her lifetime, which is why I would like her to be considered for this Award.

Rochelle started swimming with Special Olympics in 2002 after shifting to Christchurch from Hamilton, where she had lived for five years.

She began competing very early on in ribbon days held throughout Christchurch, Regional Games which were held throughout the South Island and then on to compete in National Games which have been held in Palmerston North, Wellington, Dunedin and Christchurch.

In 2016 she became a Global Messenger for Special Olympics which has meant she has been called upon to speak about Special Olympics and what it has to offer and how she has benefitted from her involvement with Special Olympics.

She has been the Chairperson of the local Special Olympics Athletes Committee which meant she also had to attend the Upper South Island Regional Committee meetings and, after finishing her term as Chairperson, she still remains on the local Athletes’ Committee.

As well as being a member of the Special Olympics team, Rochelle belongs to Jolt Dance, which is a mixed ability dance group and has offered Rochelle a multitude of opportunities also.

Rochelle has performed in many shows with Jolt and has been a part of their teacher trainee programme which now sees Rochelle teach her own class of students with disabilities on a Monday afternoon.

She has travelled to Gisborne and Wanaka to perform in schools in a programme which is a collaboration between Jolt Dance and the Christchurch Symphony Orchestra.

Rochelle attended Darfield High School and in her final year at school, secured work experience with the Darfield Bakery as a bakery assistant working out the back in the kitchen.

After she left school, she was able to continue doing work experience for three hours per day two days a week, as well as doing work experience at West Melton School, the primary school she attended, and also the West Melton Kindergarten.

Halfway through the year, the Darfield Bakery owner advised he would like to start paying Rochelle and then even offered her an extra day of work, which was a credit to Rochelle’s work ethic and reliability and the Bakery’s recognition of Rochelle’s work.

Unfortunately, this meant Rochelle had to give up her work experience at the school and the kindergarten, but Rochelle loves working at the Bakery and takes great pride in her work and enjoys the camaraderie she has with her work colleagues.

Helping out with flouring the tins for the bread, sweeping the floor, doing the dishes and icing the biscuits are a few of her duties.

Rochelle has attended self-advocacy camps with the NZDSA, which she has enjoyed immensely, and would eventually love to be a self-advocate on the STRIVE group.

She has also been on the Committee of the Canterbury Down Syndrome Association.

Rochelle has learnt to travel independently on buses and planes through her involvement with Special Olympics, Jolt and the NZDSA, and she is hoping to go flatting in the near future – maybe even with her boyfriend, Sam!

Rochelle’s family has had a significant role to play in helping Rochelle achieve all she has achieved.  Her Mum and Dad, Shelley and Jeff, and her two sisters, Jessica and Gemma, have supported and encouraged Rochelle along the way.

I know they are very proud of the confident, well-grounded young woman Rochelle has become.

 

 

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.

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.

 

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.”

Actor Duncan Armstrong stars in a series of new videos released by the Health and Disability Commissioner and the Nationwide Health and Disability Advocacy Service to help people with learning disabilities think about their own experiences with using disability services and their rights under the Code.

There are five videos, each with a different story. The videos look at how Sam, played by Duncan, and his friends use disability support services and how they resolve any concerns that they have.

The videos were produced by Film for Change Aotearoa and made locally in Wellington with Wellington actors, including people who use disability services.

Each video has a closed captions option, and the closed captions and slides have been transcribed into Word documents. Deaf Aotearoa has created New Zealand Sign Language (NZSL) for each video.

 

The New Zealand Down syndrome community is urging the Government to ignore the recommendations in the recent Health and Disability Sector Review.

“New Zealand has made terrific progress to enhance the quality of life for people with Down syndrome and other disabilities and these recommendations which place disability under the health umbrella would take us back generations where disability was seen as a disease,” says Kim Porthouse, president of the New Zealand Down syndrome Association (NZDSA).

The NZDSA has joined the chorus of outraged voices from inside and outside the disability sector who are concerned about the key recommendation to make disability support the responsibility of district health boards.

“Disability cannot be treated as a health issue, but as a condition that affects every part of someone’s life,” says Porthouse.

NZDSA President Kim Porthouse

“Good health is only one part of creating well-being, but so are education, employment, financial independence, strong community and getting access to every aspect of society. That is no different from any other person.”

To achieve a meaningful life, disabled people require support from multiple agencies, including the ministries of Health, Education and Social Development.

“The review makes all the right noises, but if the responsibility is given to DHBs, we fear the delivery will be too fragmented, inconsistent and too health focused.”

Porthouse points out that the Government has done great work with the sector on a System Transformation to give people with disabilities more decision-making and create better lives, “so these recommendations seem a backwards step”.

“The biggest failing is that people with disabilities were not consulted at all, and that is very apparent in the report.”

Down syndrome self-advocate Caroline Quick says disabled people have been excludes from this review.

Caroline Quick is member of the NZDSA’s self-advocacy leadership group STRIVE and is concerned that the review is not available in an easy read format.

“This means that many disabled people will not be able to read what impact the report will have on their lives, will not be able to respond to the proposals and are excluded from participation,“ says Quick.

Porthouse says that the review recognises the importance of  Māori having their own Authority, but fails to pay the same respect to people with disabilities who make up 24% of the population.

“We strongly urge the Government to set up a separate Disability Authority that represents all sections of the disability sector.”

She says a Disability Authority would be a natural progression of the System Transformation pilot program which, with the inclusion of people with disabilities, their whānau and service providers, has already created high-level policy design and implementation.

“That program shows that strong collaboration between the disability sector and Government has enabled the implementation of the Enabling Good Lives principles for thousands of New Zealand’s with a disability,” says Porthouse.

“In 2020 people with disabilities are dynamic and want to create independent and meaningful lives and be involved in making the decisions that impact their lives.

“However, by burying disability services within DHBs without adequate inclusion of disabled people on governing boards, this review instead upholds the archaic view of disability being an illness and the disabled being incapable,” says Porthouse.

“This will leave the disabled wilting in unfulfilled lives, unable to reach their potential. I’m sure this is not where a progressive New Zealand wants to be.”

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

 

 

During this year’s World Down Syndrome Day, the New Zealand Down Syndrome Association launched a new awareness video that celebrates diversity at a special screening in Palmerston North.

In ‘Dear Health Professionals’ 14 self-advocates from the Down syndrome community throughout New Zealand invite and challenge Health Professionals to join them in sharing what they bring to the community.

These self-advocates include Abigail, who has just secured employment after completing a certificate at Unitec, Edward who has experienced “a few health challenges,” which hasn’t stopped him from winning a gold medal for New Zealand in the Special Olympics, and Alex who is fluent in Te reo Māori and teaches kapa haka in the community.

Zandra Vaccarino (National Executive Officer, NZDSA) explains why the NZDSA has targeted the health professional in this video.

“Health and Allied Health professionals have a crucial role to play in correcting myths and changing society’s perceptions and narratives about Down syndrome, while also providing valuable and appropriate health care and support.”

The awareness video is part of the international #WhatIBringToMyCommunity campaign, led by World Down Syndrome Day – https://worlddownsyndromeday.org/

The aim of #WhatIBringToMyCommunity is to empower people with Down syndrome to speak up, be heard and influence government policy and action, to be fully included in the community.

“Dear Health Professionals, we’re here to share a message. We’re all different and unique, we all have value, and everyone has the right to live a happy and healthy life.”

After the special screening in Palmerston North, the attendees enjoyed some food and shared what they all bring to their community.

The main themes that popped during that discussion were:

  • Positive attitude
  • Great meals
  • Sincere
  • Honesty
  • Laughter
  • Love
  • Unique perspective on life
  • Infectious smiles
  • How to manage stress
  • Persistence
  • Help others
  • Appreciate life
  • Consumer
  • Adventurous
  • Creativity
  • Positivity
  • Service
  • Encouragement
  • Trailblazers
  • Spunk

 

You can watch the video on Youtube
https://youtu.be/kgw-xvlcwZ8

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.