Chat 21 Autumn 2024

Editorial

By Sarah Paterson-Hamlin

Kia ora, ngā mihi o te rā mate pūira kehe!

In this autumn issue, we take the opportunity to look at some of the celebrations for World Down Syndrome Day 2024 and explore further this year’s WDSD theme of ‘End the Stereotypes’. I know this is coming to mailboxes during a period of hurt and uncertainty for the Down syndrome and wider disabilities community. I hope the colour, aroha, pride, and unapologetic joy that comes from looking back on this year’s WDSD celebrations provides a welcome moment for all our readers. We have some fantastic contributions from our members this season, including a trip to the magical world of Disney, remembering one of the biggest names in pop, and a thoughtful and eloquent review of a landmark new series.

Our Easy Read section takes a look at what we mean by ending stereotypes, and a few of our members weigh in on what ending stereotypes looks like for them.

Always remember you can send your stories, photos, thoughts, reviews, poetry – anything really! – to me at editor@nzdsa.org.nz at any time for potential inclusion in CHAT 21. We love hearing from all of you! If there’s a particular topic you’d like covered – in Easy Read or any other format – you can also let me know and I’d be happy to explore.

On a personal note, I am super excited to be joining our New Zealand delegation to the World Down Syndrome Congress in July. I will be speaking on the topic of ‘Democracy and Down syndrome’.

Congratulations to everyone who organised, took part in, or supported an event for World Down Syndrome Day 2024. I’d like to extend a big shout out to Zandra who always puts in so much effort every single year to make sure this community is celebrated.

Aroha nui ki a koutou,

Sarah Paterson-Hamlin Editor

Paula Beguely, me, Victoria Smith, and Adrian Hatwell in a sunny Aotea Square on WDSD

Around the World

Japan

The official poster for Japan’s WDSD commemorations not only featured a model with Down syndrome, but the photographer is also a wellknown artist with Down syndrome. Photographer Taishi Kawanda is 42 and has so far held 18 solo photo exhibitions. The model, Kazuya Shimizu, is 18 and a theatre performer as well as a model.

United Kingdom

Players of the Tottenham Hotspur football club in England (the ‘Spurs’) all rocked their socks for this World Down Syndrome Day. Both the Men’s and Women’s First teams for the club wore colourful and mismatched socks (provided by Nike no less) at a special training event for the team that involved supporters with Down syndrome. Go the Spurs!

United States

Amid the many and varied celebrations of WDSD around the globe this year, this one in Memphis, Tennessee caught our eye. Josh Greer is a Dad of a daughter with Down syndrome, and every year he walks 21 miles to 21 different local attractions with a goal of raising $21,000 for his local Down Syndrome Association. We love the commitment to the number 21 and the dual celebration of Down syndrome AND the Greer whānau’s local area.

EVERYWHERE – Assume that I can

YouTube, Facebook, Instagram. TikTok... you name it, this amazing video has gone viral absolutely all over the place. Madison Tevlin has become a familiar face globally, and started so many awesome conversations about what we assume about Down syndrome. Even better, the videos sent in by people with Down syndrome in different countries and languages, including Aotearoa, have spread this message even further. What an awesome win for the Down syndrome community!

On the Socials

Facebook – Community Facebook Pages

It doesn’t all have to be about complaining about the Council and asking what that big noise was in the next street over! Most suburbs and areas of towns and cities in Aotearoa now have a community facebook page, and many of these came alive with posts about World Down Syndrome Day this March. Local kids with Down syndrome in their favourite local places, highlighting inclusive initiatives like communication boards in playgrounds, warm memories of locals from many years ago, or simply sharing beautiful faces. What an awesome use of this social media tool at the super local level.

Instagram – @tamara_eckhardt and @jeorgbrueggemann

We are so excited by this sneak peak at a photography project involving nearly 200 athletes with Down syndrome at the Special Olympics World Games. Even this brief glimpse at what we’re sure will be an incredible project shows us the diversity of the Down syndrome community, and reminds us that we’re not alone out here in Aotearoa!

WDSD - Northland

By Kathy Sadgrove

On the 23rd of March our community came together to celebrate World Down Syndrome Day with a walk around the Whangārei Hātea Loop. ‘Down For A Walk’ families, supporters, our Whangārei Mayor, and even the family pooch came from far and wide dressed in our NDSSGT colours - purple and orange. Marching forth with strength and determination around the Hātea Loop, they were a force to be reckoned with, not even letting a persistent shower of rain deter them. Thankfully, the sun eventually did shine. Prizes were given out, raffle tickets were bought, and photos taken. Yummy sausages and bread supplied by the Hikurangi Mountain Lions filled our tired walkers’ and supporters’ tummies. The smiles on faces say’s it all!

WDSD - Auckland

We have had loads of activities happening for our important day.

BIG PICNIC

We had around 50 families attend our Big Picnic at Papatoetoe East Primary School. It was a fabulous day with our members market, Star Jam dancing, and a guest appearance from some members of the Star Jam Alumni, sausage sizzle, ice blocks, COFFEE, a Rock your Socks parade (with prizes) and our World Famous in Auckland…. WDSD Raffle & Prize Draw.

A big thank you to Papatoetoe East Primary for the use of their incredible venue – which provides a safe and accessible space for our event, our huge team of volunteers from McAuley Girls High, Wakaaranga Rangers, and those who individually volunteered. We look forward to getting this in your calendars early for March 2025 – so we can make it even bigger!

ROCK YOUR SOCKS

We have been blown away by how many organisations have taken part in Rock Your Socks this year. So far, we have about 20 on our list (!) – but there may be others who took part.

AUCKLAND ARTS FESTIVAL – WORLD DOWN SYNDROME DAY PICNIC

21 March was a gorgeous day in the City of Sails. Paula spent the day with the crew at Auckland Arts Festival – who celebrated World Down Syndrome Day with two performances of SPARK-Live (a Glass Ceiling Arts Collective show) featuring our very own Lily Mae Ivatt-Oakley. The show was spectacular –the venue, the cast, the audience participation, and the great range of sensory interactions. It was thought provoking – and so well done. Between shows – we supported hosting a picnic in Aotea Square in conjunction with Glass Ceiling, Auckland Arts Festival and Raukatauri Music Therapy Centre.

#ENDTHESTEREOTYPES, #ASSUMETHATICAN

There were so many great hashtags for this year’s World Down Syndrome Day – that we did our own combination….! A little video was produced with some of these ideas and shared on our social media. Have a look at https://adsa.org.nz/happy-worlddown-syndrome-day-to-you-all/ and thank you to Jacob (4) one of our newest members who starred on the front screen.

WDSD - Canterbury

CDSA families celebrated WORLD DOWN SYNDROME DAY on the actual day in a variety of ways. Many of us wore odd, colourful, crazy socks wherever we went; some of us met at Merivale McDonalds wearing our socks; some of our schools and pre-schools took part by rocking their socks and raising funds for CDSA.

To celebrate WDSD, a whole bunch of CDSA families headed to the Weka Pass Railway and had a fabulous time on the Weka Pass train. It was a hot and sticky Canterbury late summer day and we enjoyed a picnic together part way through the journey, followed by ice creams at the station’s shop.

Fundraising Fun

One of the most rewarding things about UpsideDowns is belonging to such an amazing community of young people and caring whānau. We love taking any opportunity to get out of the office and meet our wonderful members — we recently had a blast at the World Down Syndrome Day picnic in Auckland! But in truth we don’t get to meet nearly as much of our community throughout the motu as we’d like to (making sure everyone has access to life-changing speech and language therapy is busy work, it turns out).

Which is why we absolutely love it when our members come to us with awesome ideas for supporting UpsideDowns! Not only do we get to learn a bit about the people who make up our community, but we get to see their passion and talents on display too. And any funds raised to help us continue our work is always greatly appreciated; we’re a tiny team with no government funding, so every bit is a huge help.

A Rousing Performance

This summer, Emily and her whānau have been celebrating Dunedin’s Scottish connection by busking in the city. Having been an UpsideDowns member some years back, Emily has come a long way on her communication journey and was keen to give back. Along with her little sister Anika and mother Karola, she entertained the city’s many cruise ship visitors with bagpipes and tenor drum.

These talented musicians helped raise enough to provide a term of speech and language therapy for another Kiwi kid living with Down syndrome. Our heartfelt thanks to Emily and her clan.

Buzzed Off

Combining a bold fashion statement with generosity, last year’s superstar supporter Viv decided to shave off her gorgeous locks to help raise money for UpsideDowns. Viv, mother to UpsideDowns member Erika, reached out to us with the plan and we set up a Givealittle crowdfunding page so people could pledge their support before she said goodbye to her hair.

We were privileged enough to come along to the salon and film the big shave, so we could share it with all those who had donated to the campaign (you can still view it at www.givealittle.co.nz/cause/ vivs-big-shave). It was lots of fun and Viv raised over $1700 to go towards speech and language therapy.

Got an Idea?

If you have a fundraising idea you’d like to make a reality, please get in touch with Adrian at adrian@ upsidedowns.co.nz, as we’d love to help out, advise, and publicise your event. You don’t have to be a musical virtuoso or shave your head! There are loads of fun ways to fundraise — like bake sales, movie nights, sports challenges — so do get in touch if you’d like to know more.

NEO Notes

Navigating Challenges Advocating for Inclusion

World Down Syndrome Day serves as a poignant reminder of the diversity, resilience and potential inherent in every individual with Down syndrome. It is a day to end stereotypes, celebrate achievements, dismantle barriers, and advocate for the full citizenship rights of all people with Down syndrome. To promote World Down Syndrome Day the NZDSA was delighted to collaborate with CoorDown, an organisation based in Italy, for an international campaign called “ASSUME THAT I CAN”. The campaign aimed to promote an end to prejudice and encourage support for the unique potential of each person with Down syndrome. The film was launched worldwide simultaneously by several organisations, including COORDown, Canadian Down Syndrome Society, National Down Syndrome Society, Global Down Syndrome Foundation, Down’s Syndrome Association UK, Down Syndrome Australia, and the New Zealand Down Syndrome Association. Members of the Fundació Catalana Síndrome de Down were also involved in the campaign. If you haven’t watched it yet please take a moment to view and share with others.

The Whaikaha announcement on the eve of the Big Connect to mark WDSD was a shocking reminder that our journey towards inclusion continues to be fraught with challenges. The announcement sparked a range of emotions, from frustration to trauma and for parents a sense that their valuable role is not recognised or valued. Many have said some of the

implied messages following the announcement were denigrating.

At the heart of the NZDSA lies the tireless dedication of volunteer parents and whānau who have surmounted countless obstacles in their quest for advocacy for full citizenship rights and for creating a better future for their loved ones. Our mission extends beyond mere support and information; it encompasses education, empowerment, and systemic advocacy to ensure that the voices of individuals with Down syndrome are not only heard but actively incorporated into policy and decisionmaking.

So the recent announcement by Whaikaha has sent shockwaves through the NZDSA community and the wider disability community, challenging the very essence of all our advocacy work over decades. As parents and whānau, we are tasked with trying to understand what this means and then explaining the implications of these changes to our children or people with Down syndrome because as yet we are still waiting for the publication of Easy Read information. These challenges, however, serve as a catalyst for the NZDSA. It is a pivotal moment, reminding us of the critical importance of speaking up for the rights and dignity of every individual in our community.

It has highlighted that our commitment to the Enabling Good Lives (EGL) approach remains unwavering. EGL is a beacon of hope, offering disabled people and whānau, the opportunity to carve out a life filled with purpose, flexibility, choice and control. However, the recent events threaten to erode the progress we have made, underscoring the need for renewed advocacy and a steadfast commitment to the EGL vision, approach and principles. As we navigate these turbulent times, let us draw strength from the collective spirit of advocacy and unity that defines our community. We have shared in Enews and the website how you can get involved in advocacy. We know that your stories are persuasive and powerful and your local

MP needs to know how Whaikaha’s announcement will impact you and your family. As we navigate these turbulent times, let us draw strength from the collective spirit of advocacy and unity that defines our community. Together, we can overcome adversity, reverse the “pause” on flexibility, gain recognition for the importance of wellbeing for parents and whānau, champion inclusion, and pave the way for a brighter, more inclusive future for people with Down syndrome and their whānau.

Please see below some updates and news from the NZDSA

Kia kaha

Zandra

NZDSA Update: Advocacy in Action

The New Zealand Down Syndrome Association (NZDSA) continues to make significant strides in championing the rights of individuals with Down syndrome. Here’s a glimpse into some recent initiatives and developments.

World Down Syndrome Congress (WDSC) Participation

The NZDSA has had four abstracts accepted for the WDSC. The NZDSA is pleased to support a self-advocate from STEP-UP to attend and present which will ensure the voice of New Zealanders with Down syndrome is heard globally.

National Achievement Awards

The NZDSA National Achievement Awards, hosted by Her Excellency the Governor-General, will take place on Thursday 14 November in Wellington. Nominations are currently open, so seize the opportunity to recognise the outstanding contributions and achievements of people with Down syndrome in your community. See the notice page for details.

Briefings to Incoming Ministers

The NZDSA has prepared briefings outlining the concerns and priorities of our community for incoming ministers, ensuring that the voices of individuals with Down syndrome and their families are heard at the highest levels of government.

Stakeholder Engagement

The NZDSA has representation or actively participates in various stakeholder meetings to advocate for policies across government that will have a direct impact on the Down syndrome community. Zandra was recently appointed as the Carers Alliance representative on the Whaikaha Strategy Group.

Advocacy on Ongoing Resourcing Scheme (ORS)

The NZDSA is currently gathering information from its members about rejected applications for the ORS scheme. The purpose of this is to determine if this is a growing trend. If you have either been discouraged from applying for ORS or your application was rejected, we encourage you to contact Zandra at neo@nzdsa.org.nz. We will take up this issue with the Ministry of Education.

Community Engagement Events

We hope to see you at the Kōrero and Kai events we are hosting in Invercargill and Dunedin.

Digital Employment Resource

The NZDSA is enhancing its Employment resource with the addition of a digital video resource, showcasing successful employment stories of individuals with Down syndrome. The aim is to highlight the value of hiring people with Down syndrome and to demonstrate inclusive workplaces.

Youth Development Camp

Expressions of interest are now open for the Youth Development Camp, scheduled for the 22nd to 24th of November at Vaughan Park, Auckland. This event promises to be an enriching experience for young people with Down syndrome.

NZDSA AGM and Elections

The NZDSA AGM is on the 2 1st October 2024 at 7.30pm. We will share the zoom link via Enews and Facebook. This is also a reminder that we currently have vacancies on the NZDSA Committee please - see the notice page.

Are you the next star of stage or screen?

Join the Glass Ceiling Arts Collective inclusive theatre programme, where everyone is welcome! Youth classes in Auckland, Whangārei, Hikurangi, Tauranga & Christchurch. Adult classes in Auckland & Whangārei.

Register here; https://www.glassceilingartscollective.com/

— click the 'Register Here' blue box on the right of our home page.

Come along & see our next show, Mary Poppins, being performed in Warkworth Town Hall, 24-26 May. Link to tickets will be on our website soon.

Funding needed to take show aimed at disabled communities around Aotearoa

By Luka Forman

This article is reproduced with kind permission of RNZ. It was originally published on 21 March 2024

A theatre company is appealing for funding to take a multi-sensory production aimed at people living with disabilities on the road.

Spark Live kicked off at the Auckland Town Hall on Thursday and will tour Northland in the coming weeks.

Organisers were hoping to give disabled communities around the country a chance to see it.

Lily-May Oakley plays teenager Kate in the showand had high hopes for how the audience would feel about her character.

“I am really hoping that they’re gonna fall in love with me and fall in love with Kate but also love everyone else in the show like my mum.”

Lily-May has Down syndrome and said it was extra special to be the star of the show.

“Well I didn’t know that I had Down syndrome until I got told, and it’s not different to me - I feel absolutely normal with having Down syndrome. It’s even more special that I have it and it’s the whole part of being in the show.”

She had big plans for where theatre would take her next.

“I think it’s kind of obvious that I’ll be in Hollywood, but right now I’ll work in the movie theatres.”

Spark Live was a multi-sensory production, meaning all the audience’s senses were engaged.

Smoke and bubbles billowed out, props were used to make sounds and brought around for the audience to interact with and there was plenty of musical and dance numbers which the audience got involved with.

Show director Charlotte Nightingale said this kind of theatre, which was designed to appeal especially to people with profound learning disabilities, was incredibly important for the community.

“They have an experience that is uniquely their own, we have a little bit of story, we explore something in the multi-sensory and you connect in your own way as an audience member.”

The launch date of the show was no accident, it was also World Down Syndrome Day, and people from the community gathered for a picnic at Aotea Square to celebrate as part of Auckland Arts Festival. Jamie Henshaw said it was important for people with Down syndrome to get together.

“You just want to be out there and do what you want to get out and do.”

Spark Live was amazing, she said.

“They are very, very talented people out there, and we got to have a little dance in-between with so many cool songs. I just thought the whole show was incredible.”

Spark Live will tour around Northland over the coming weeks, but Nightingale was hoping for more funding to take the show around the rest of the North Island.

But she said government cuts to the Ministry of Arts, Culture and Heritage made it a difficult time to get funding for the arts.

“We still need more funding. We want to ensure that this theatre is really accessible, and the way that we do that is having low cost or no cost tickets... so funding is really important, we need it, we’re desperate for it.”

The show will also tour the South Island next year.

Photos RNZ/Nick Monro

Brylee Mills (Chair, Glass Ceiling Arts Collective), Lily-Mae Ivatt-Oakley, Sarah Paterson-Hamlin, Paula Beguely, and Mike Eaglesome (GM, Glass Ceiling)

The Disney Cruise!

By Laura

Hi my name is Laura and I am 22. I live in Havelock North. I love Disney and for my 21st birthday present I got a Disney Cruise from Auckland. On November 28th me and my family got on the Disney Wonder for 3 nights.

When we got on the ship we went to Cabanas the buffet restaurant for lunch then we explored the ship. We then went to the Sail a Wave party and got to see Captain Mickey and Minnie. At 6pm every night there were broadway shows at the theatre. My favourite was the Golden Mickey’s and there was Frozen and Disney Dreams too. After the show we went to dinner. There was 3 restaurants on the Disney Wonder. On the first night we went to Animators Palate and we drew our own characters to go on the TV. On the second night we went to Tiana’s place for a Mardi Gras party and

on the last night we went to Tritons restaurant. My favourite was Tiana’s Place.

Some of my favourite parts of the cruise was the Encanto celebration where I got to meet Mirabel and Bruno and making Stitch’s Space Goo. I also went to the character dance party where I danced with Captain Mickey and Goofy!

I had so much fun on the Disney Wonder cruise ship and am so excited for it to come back to Auckland next December.

“There She Goes”

Review

by Jody Kilpatrick, NZDSA Member

Sarah asked me to review “There she goes” and I said yes because I would do pretty much anything Sarah asked me to. When I loaded up the first episode on YouTube and told my husband Julian what I was up to he expressed some concern. “Does Sarah know you only watch Brooklyn 99 and Bluey?” he asked doubtfully. Fair question; I am hardly a qualified tv show reviewer.

But I devoured “There she goes.” All I knew was it was about a family with a child who has a disability, and that it contained “the library scene.” I had watched the library scene, shared in a facebook group, in amazement: this could have been actual footage of some (not all) of my family library trips. Rosie (9) wreaks delighted havoc, racing around, making noise, pulling books off shelves, grabbing babies, stealing soothers. Ben (13) is sullen and resentful about the outing, and unwilling to help rein in the chaos. Simon and Emily (parents) fluster after Rosie, calling instructions to each other, trying to preempt the next issue while doing damage control. (Shoutout to Chloe and Sarah Jane who always provided a welcoming space at our local library and were never aloof and disapproving like the librarian in the show!) At the end of the scene, as the family beat a hasty embarrassed retreat from the library, Rosie verbalises “mama” for the first time. Upset recedes, overwhelmed by shared wonder and pride.

I enjoyed seeing a show where the daily concerns were relatable for me as a parent. Seeing the calculated decision to let your kid destroy something because it means a few minutes of peace. Recognising the heartbursting happiness because your kid has achieved on their own terms. Understanding the planning and action of fast getaways when things turn to custard. Hearing a brother say with utter conviction that of course his sister will live with him when they’re adults and their parents are dead. Knowing the posture for holding a heavy, resistant kid while trying to finish a conversation. And feeling shame and failure settle like relentless fog when your kid isn’t included: defeat in a world not set up for your family.

The Yates are no Heelers (of Bluey fame), that’s for sure. Theirs is not aspirational parenting with high ideals to live up to. No one has slept well enough to play imaginative games or be cute as a button. There is dysfunction and internalised ableism. The Yates are surviving as best they can, and it’s both ugly and beautiful to witness. Through it all, the love that holds them together is evident and moving. The world needs to make space for this family. The world needs to make space for Rosie.

I know there was some criticism from the disability community about the show as it does not centre Rosie’s experiences as a disabled person, and can be dismissive of her dignity in its elevation of parental stress. These are fair assessments. I still felt it was a good show, but of course it would be better if it was one of many shows featuring disability as a normal part of life, rather than a rarity with a moral obligation to get everything right.

Simon, the dad, drove me up the wall. I read that the creator and writer, Sean Pye, had originally made Simon a saintly self sacrificing caregiver but Pye’s wife, Sarah Crawford, got involved with the show as a co-writer and put a stop to that. Simon doesn’t cope well with Rosie, especially as a baby, and spends hours at the pub. His drinking buddy tells him to go home to his family but never once suggests they take some beers over and hang out with Emily and the kids.

This aspect of the show is tragically believable. The lack of insight or effort from others. There are “good” individuals in isolation; an adoring Nana, a brilliant SLT, eventually a compassionate social worker, a random mum at the park with an encouraging word. But what this family needs is a community –a web of connected people who care, make space, educate themselves, and keep making space – even when it requires creativity and commitment. There is a glimmer of hope that the Yates have finally found their community in the last episode, and it’s a wonderful relief.

The show captures the painful, beautiful complexity of being human, using a relatable, domestic scale. The acting is convincing, the characters believable (well, I hope there’s a disproportionate representation of gormless bystanders and disapprovers), and I thoroughly appreciated it. I recommend this show for parents of kids with disabilities who find relief in being “seen” by mainstream content, and for anyone willing to have their worldview expanded by a peek behind the scenes of one family’s experience of living with disability.

#EndTheStereotypes

Contributed by NZDSA members

What is your least favourite stereotype about people with Down syndrome?

“people with Down syndrome can’t follow instructions”

“When people assume they can’t answer a question for themselves. For example, a doctor in hospital asked me where Thomas’s pain was. I turned to Thomas and said where is your pain which he answered and this showed the Dr he could answer for himself.”

“The idea that people with Down syndrome are always happy. It sounds like a good thing but it just so undermines individuality, and I think gives people a bit of an excuse not to think too hard about someone’s feelings.”

#EndTheStereotypes

What’s an everyday action someone can take to end stereotypes?

“An everyday action is to share some factual information to provide the real reason for the behaviour they might be seeing. eg. My student with Down syndrome doesn’t listen to me, and never does what I say! (could have a hearing issue, may not have heard you, most people with DS have a poor short term memory for what they hear - so your instruction may have gone in one ear and out the other.... Did you get their attention first? Were they aware you were giving an instruction. Did you communicate in a way that suits the learning style of this person, i.e, use less words, speak slowly, use a visual or write down the key points? (I could go on and on and on you know!)”

“If someone asks me how old my son is I turn to Thomas to answer their question. So educating the person to ask him directly”

“Being visible in spaces people might not expect I think is a really big part of it. Just being unapologetically ourselves, visibly and obviously.”

For the fourth year running, members and friends of the Down syndrome community from across the motu got together online to celebrate World Down Syndrome Day.

It’s no secret that it came after a pretty turbulent few days for disabled New Zealanders and their whānau in general, and the Ministry Whaikaha were gracious enough to acknowledge this and issue an apology. This was not something that was forthcoming from the Minister for Disability Issues who was also a guest speaker on the call.

However, the focus was on celebration and positivity, and the hosts, Executive Officer Zandra Vaccarino, and STRIVE members Abigail Knight and Mohit Chand, did a stellar job of doing just that as they took us through the jam-packed programme. It was such a joy to see so many faces on screen, representing pretty much every age, stage, and background you can imagine. Enjoy some of these highlights from the Big Connect 2024!

“I enjoy being a member of STRIVE and being a role model and advocating for people with Down syndrome to help them speak up and be heard. Fun fact, I like going to concerts and shows and having a great time. This is how I end stereotypes.”

– Rochelle Waters, STRIVE member.

“I work at Pak n’ Save, fully employed. I’ve been there 22 years. I even worked through COVID-19.”

– Edward Borkin, STEP-UP member

“It’s those little wins in life that help break down those stereotypes.”

– Colleen Brown, NZDSA life member

“I believe that inclusive communities are communities that address issues of social equality, of social justice that challenge traditional power dynamics and that challenge the charity model of disability that we know has kept this community in boxes for so long.”

- Lyn Cotton, Artistic Director, Jolt

“I look in this call tonight, and I see that we have athletes, we’ve got some television stars, advocates, and artists. You have all broken stereotypes that we need to change.”

– Loren Savage, Whaikaha

“As the parent of our lovely third daughter, who lives with Down syndrome, I really respect seeing role models like Flynn. And I see that a day like today is a great way to introduce visibility and promote better acceptance across New Zealand so that everyone can make the most of their lives. So today and as we celebrate throughout the year, this is about you and your families, your workmates and your community. Coming together to end those negative stereotypes and ensure that people with Down syndrome are given the opportunity that they deserve. I know my colleagues in Government agree and my job is to make sure that they understand the real issues facing disabled people.”

– Hon. Penny Simmonds, Minster for Disability Issues.

“As I gained knowledge and learned about the Convention on the Rights of Persons with Disabilities, I felt powerful knowing that there were documents that talked about my rights as a disabled person, and that there were other people interested in protecting them alongside me and others like me.”

– Prudence Walker, Disability Rights Commissioner

“We need to fund all students with Down syndrome fully to enjoy the positive opportunities in the education system.” –Dr Maree Kirk, Networks of Expertise.

“The first thing I thought about was breaking down our own stereotypes – thinking about the positive things our young people have got and expelling those myths that we’ve been fed through the years as parents about what our young people with Down syndrome won’t do, can’t do, might not be able to do.”

– Jane Linn, parent

“For me, playing sports is being part of a team, being included, being accepted for my abilities and for who I am.”

- Alfie Linn, sportsperson

Andrew Oswin’s World Down Syndrome Day Speech 2024

Some people think that I can’t do things, but I can. I can speak up and self-advocate, and I have been a member of STRIVE, and I am now a member of STEP UP to mentor new members of STRIVE. I have paid work doing administration including data entry for Parent to Parent Greater Canterbury and I do voluntary work at a dementia day centre. I speak up at Down Syndrome International Zoom Forums as the New Zealand Representative to give a New Zealand perspective. In 2011, I went to Greece for four weeks with the New Zealand Special Olympics Summer Games Team, and came back with two gold medals. Since then, I have travelled to Europe three more times with my parents, and had wonderful experiences.

Report by Andrew Oswin

STEP UP & Down Syndrome International New Zealand Representative

Stereotypes

Easy Read Guide to understanding stereotypes

This article is about what stereotypes are, who they can impact, and what we can do about them.

What is a stereotype?

A stereotype means thinking that a person will look, behave, or think a certain way because they belong to a certain group.

Stereotypes might be applied to someone because of their age, ethnicity, gender, physical appearance, disability or how much money they have, as well as lots of other things.

For example, someone might assume a woman can’t be a good boss in a company.

Stereotypes often have a negative impact on the person or people they are about. They are often unfair and untrue.

For example, a person who is made fun of because they look different to others around them, might start to feel like the bullies are right even though they are not.

Prejudice is when someone has a belief about a person or a group based on a stereotype. Things like racism, sexism, ableism, and homophobia are all examples of prejudice.

An example of prejudice would be thinking someone is dangerous because of their skin colour.

Discrimination is when someone acts on their prejudice.

For example, it is discrimination to not give someone a job just because they have Down syndrome and for no other reason.

Where do stereotypes come from?

Often stereotypes come from not having spent time with people who are different from you in some way. It is easier to have a stereotype about someone from a certain religion, for example, if you have never met someone of that religion, or learned much about that religion.

Stereotypes can also come about when the societies that we live in are unequal. If a certain group is often denied their right to an education for example, a stereotype that they can’t be educated might become common.

Stereotypes can also come from ideas learned from people we know or what we read in books or see on TV and in movies.

For example, if almost all the movies about clever scientists are about male clever scientists, it helps the stereotype that women can’t be clever scientists.

What can I do about stereotypes? Everyone can help reduce stereotypes that lead to prejudice and discrimination. These actions aren’t always easy, but they are helpful.

We can think about our own ideas and actions and whether we might believe in some stereotypes.

We can challenge our family or friends who express prejudiced beliefs if it is safe to do so. Sharing this article could be a first step.

This year the theme for World Down Syndrome Day is End The Stereotypes. We can help end stereotypes about people with Down syndrome by sharing true information about people with Down syndrome, and encouraging people to get to know individuals with Down syndrome as people – not as stereotypes!

IHC Library

IHC Library now entirely free to use!! Some exciting news from the library is they now send return courier bags with what you borrow so you no longer have to pay to return items.

Everyday citizenship: seven keys to a life well lived by Wendy Perez and Simon Duffy Summary: Being a citizen means making your own choices about how to live life to the fullest. This book helps you ask the right questions so you can find the answers that are right for your life. It shows you the path to finding meaning, making a home, managing your money, and filling your life with love, support and freedom. Once you hold the keys to your life in your hands, you can make bold choices and follow your dreams. No dream is too small or too big. See what you can achieve, and don’t ever stop!

Adapting health therapies for people on the autism spectrum: by the girl with the curly hair by Alis Rowe It is important for autistic people to receive proper medical treatment and health care. Often their health problems get overlooked or missed because they feel they can’t make an appointment or the appointment doesn’t go very well. Perhaps the practitioner has not understood their needs and has not made any adaptation for their autism.

This guide uses comic strip examples to demonstrate quite straightforward changes anyone working in a health practice can make and which will make a massive difference to autistic people, as well as making the practitioner’s job easier.

The art of caring for people with intellectual disabilities: enhancing quality of life through attitudes, education and behaviour by Robert S.P. Jones

Summary: The Art of Caring for People with Intellectual Disabilities considers how the skills and attitudes of a carer can elevate the life of the person they care for. The book is based on Acceptance and Commitment Therapy (ACT) and asks carers to analyse their own core values in relation to their role and to identify strategies to help them fulfil their values. It explores the multifaceted nature of the caring role – from carer to nurse to companion and beyond – and how to overcome the range of challenges involved in caring for people with intellectual disabilities using the concept of ACT to enhance the wellbeing of both carers and those they care for.

Going to out-patients by Sheila Hollins

“We all worry about visits to out-patients. For some, such as people with an intellectual disability, there is the added fear of not being able to explain what is wrong, as well as not understanding what is happening. This book is designed to support people before, during and after their out-patient visits. Bill has his broken arm x-rayed, put in plaster and finally his plaster taken off; Anna visits the ear, nose and throat department; Jane has an ultrasound examination. The book will give you the opportunity to provide as much support and reassurance as is needed by the person you are supporting, and to answer their questions honestly. Feelings, information and consent are all addressed. Ideally this book should be used to prepare someone before he or she goes to hospital. It will also be invaluable for hospital staff to use during consultations and before treatments, and to support effective communication.” - PUBLISHER’S WEBSITE

I’m getting a checkup by Marilyn Singer

Summary: “Going to the doctor is easy if you know what to expect! Join three kids and their parents as they visit their pediatricians for a typical check-up, and learn all about the different tools doctors and nurses use. The upbeat text and bold, whimsical illustrations will reassure young readers - and their grownups - by guiding them through a physical examination step by step.” - BOOK JACKET

The essential guide to health care for adults with Down Syndrome by Vee Prasher Summary: “A practical guide for professionals, support workers and family members on the health care needs of adults with Down syndrome... The book deals with both minor and more serious health

problems, their possible causes and how they can be prevented and treated. It aims to improve awareness of the most important physical and psychological issues experienced by adults with Down syndrome.” - BOOK JACKET

Review: This book is very practical, and it is easy to dip in to the relevant section to get the information you need. This book offers an overview of the many health issues that someone with Down syndrome may experience. While it doesn’t provide in-depth information on any condition it is a book that will prove useful in its succinct description of the condition, its causes, symptoms and recommended treatment.

Featured research Journal article

Parents’ perspectives on provided health care for adults with Down Syndrome: A qualitative interview study by Lisette M. Verstraten- Oudshoorn Summary: Background A comprehensive multidisciplinary medical guideline for adults with Down Syndrome is lacking in the Netherlands. In this study, we aim to explore parents’ views on multidisciplinary care and identify which aspects of health care they find most important in the context of developing such a guideline. Method This qualitative study used semi-structured interviews. Nineteen interviews were conducted with parents of adults with Down Syndrome. The main themes and subthemes were identified from the transcripts by using the framework method. Results Four main themes were identified which should be addressed in the guideline according to the parents: parents’ support in medical care, patient-centred care, important medical topics and the organisation of medical care. Conclusions This study provides insights into parents’ opinions about medical care for adults with Down syndrome. These insights are used in the construction of a guideline to improve medical care for adults with Down syndrome.

Please contact the IHC library team (Phil, Ros and Michael) on 0800 442 442, email them at librarian@ ihc.org.nz or visit the online catalogue at https://ihc. mykoha.co.nz/ You can watch IHC library videos at https://ihc. mykoha.co.nz/cgi-bin/koha/opac-main.pl

Celebrating Michael Jackson Legacy

A night of Music Dance, and Gelato.

In a world where the music of Michael Jackson continues to captivate hearts, two devoted fans, Sam and Cam embarked on a unforgettable journey to experience the magic of the ‘King of Pop’ firsthand. Their destination? The Michael Jackson HIStory show.

Dancing to ‘Thriller and Beat it”, they couldn’t help but marvel at the timeless allure of Jackson’s music.

After the final encore, they both decided to extend the night by indulging in a sweet treat; gelato. For them, the night was more than a concert and dessert, it was a celebration of a musical legend. As the night ended, Sam and Cam carried with them the memories of a fantastic evening one fueled by the Magic of Michael Jackson’s music , the joy of dance and 32 years of friendship and delicious gelato.

Contact Directory

NZDSA Committee

Kim Porthouse President 0800 693 724 president@nzdsa.org.nz

Zone 3 Representative Whanganui, Manawatū, Gisborne & Hawke’s Bay 0800 693 724

Bev Smith

Zone 1 Representative Northland 0800 693 724 northland@nzdsa.org.nz

Zone 4 Representative Wellington & Wairarapa 0800 693 724

Maia Faulkner Zone 1 Representative Auckland 0800 693 724 auckland@nzdsa.org.nz

Angelique van der Velden Zone 5 Representative Ashburton & all areas above 0800 693 724 zone5@nzdsa.org.nz

Gwen Matchitt Vice President

Zone 2 Representative Waikato, BOP & Taranaki 0800 693 724 zone2@nzdsa.org.nz

Averill Glew

Zone 6 Representative All areas below Ashburton 0800 693 724 zone6@nzdsa.org.nz

Shelley Waters Treasurer treasurer@nzdsa.org.nz

NZDSA Staff

Zandra Vaccarino

National Executive Officer 0800 693 724 neo@nzdsa.org.nz

Jess Waters Social Media & Information Officer hello@nzdsa.org.nz

Regional Liaison Officers

Corrie Paice Taranaki Community Liaison Officer 0800 693 724 taranakidownsyndrome@gmail.com

NZDSA Socials

Averill Glew Self-Advocacy Portfolio averill@nzdsa.org.nz

Linda te Kaat National Administrator 0800 693 724 na@nzdsa.org.nz

Siobhan Vaccarino Administration Support Officer hello@nzdsa.org.nz

Sarah Paterson-Hamlin CHAT21 Editor editor@nzdsa.org.nz

Daniel te Kaat Graphic Designer 021 22 333 93 daniel@slaughterhaus.co.nz

Kathryn Sadgrove Northland Coordinator 0800 693 724 ksadgrove@xtra.co.nz

The NZDSA has a Facebook page that serves as a community forum and notice board for relevant issues, events and stories. facebook.com/NZDSA

Follow us on Instagram to see what our communities are up to at nz_down_syndrome

Check out the NZDSA’s website at nzdsa.org.nz

Paula Beguely Auckland Community Liaison Officer 0800 693 724 clo@adsa.org.nz

Pauline Marshall Canterbury Community Liaison Officer 0800 693 724 cdsainc@gmail.com

NZDSA Membership

Membership is now done online. For all details please go to www.nzdsa.org.nz or for any queries please ring 0800 693 724. If you have not received an email to update your membership online please call the number above.

Donations

The NZDSA receives no Government funding and relies solely on donations and grant applications to keep us running. If you can make a donation big or small, please go to www.nzdsa.org.nz or ring 0800 693 724.

The 2024 Youth Development Camp

This exciting event will be hosted on the 22nd to 24th November 2024 at Vaughan Park and MERC. To secure your spot, please send an email to na@ nzdsa.org.nz. Spaces are limited so please reply by the 29th April 2024.

NZDSA National Committee Vacancies

Due to recent resignations, we have vacancies in Zone 3, Zone 4, and Zone 6. If you are an NZDSA parent or whānau member and interested in serving on the National Committee, please get in touch with Zandra at neo@nzdsa.org.nz.

Numicon Kits

We still have Numicon kits available if you are interested in loaning one for the school year. Numicon is a multi-sensory, structured maths programme. If you would like to know more about Numicon the website is http://www.numicon.co.nz/

• The NZDSA has 16 kits to loan to NZDSA members.

• These kits can be used at home or school.

• The loan period is from February/March to the end of November.

• The NZDSA does require you to pay a refundable bond of $60.00.

• The NZDSA will reimburse you the $60.00 bond if the kits are returned clean and complete.

• The only cost to you is the courier and handling fee which is $40.00 and the cost of returning the kit to the NZDSA.

If you would like to borrow a kit please contact Linda te Kaat at na@nzdsa.org.nz or 0800 693 724.

NZDSA National Achievement Awards

The NZDSA is calling for nominations for the NZDSA 2024 National Achievement Awards. This award recognises the accomplishments of people with Down syndrome during 2022-2023. If you would like to know how to nominate a person please email Linda te Kaat na@nzdsa.org.nz before the 7th of June.

Tell us your story!

We are looking for adults with Down syndrome to tell their life stories! We will either publish these stories in a book or include them in CHAT21 or on the NZDSA’s website. We will be looking at different aspects of life stories, for example education, work, friends, love, leisure time, spirituality, inclusion, and dreams for the future. If you are interested in being part of this project, please contact Zandra at neo@nzdsa.org.nz and we will send you a list of questions that you could have a look at. We will organise a Zoom meeting where you can tell us your life story. You are welcome to bring a support buddy or whānau member to this Zoom session. Hope to hear from you soon!

Thanks

Thanks to the following funders and sponsors who have made donations to the NZDSA this financial year:

• Lottery Grants Board

• COGS: Rodney/North Shore

• COGS: Hamilton

• COGS: Auckland City

• COGS: Coastal Otago

• COGS: Manukau

• COGS Southland

• COGS Manawatū/Horowhenua

• COGS Whangārei

• Grassroots Trust Central Ltd

• Holdsworth Charitable Trust

• Eastern & Central Community Trust

• Te Whatu Ora — Health NZ

• Ministry of Social Development

• Joyce Fisher Charitable Trust

• Pub Charity

• T G Macarthy Trust

• Lion Foundation

• Southern Stars

• Lindsay Foundation

Our people

Thomas at People First