Governor-General honours Down syndrome heroes

Governor-General honours heroes in Down syndrome community

Several members of the New Zealand Down Syndrome community were honoured on June 14 during the Volunteer and Achievement Awards by Governor - General Dame Patsy Reddy at Government House in Wellington, on behalf of the New Zealand Government. Linda te Kaat and Tania Grose from Christchurch received the Val Surgess Memorial Volunteer award for their work organising the annual Unforgetaball for people with Down syndrome in Christchurch. Lilly Harper, Caroline Quick and Josh Cooke all received an Achievement Award for their incredible achievements in their community, living a busy, active and interesting lifestyle in their own community to set a great example to show that Down syndrome is no barrier for having a full life like every other person around them. The Awards ceremony also recognised Paul Gibson for his work with people with Down syndrome by awarding him a Life Membership of the NZDSA. The nominations below tell a bit more about the achievements of these wonderful recipients.

Linda te Kaat and Tania Grose Val Sturgess Memorial Volunteer Award

This year the Val Sturgess Memorial Volunteer Award will be shared by the dynamic duo Linda te Kaat and Tania Grose who decided 13 years ago during ball season that it would be a great idea to organise a ball for people with disabilities so that they could look forward to attending a social event. Their intention was to host the ball and then gauge after the first ball if it was an event that their community wanted. The ball was a huge success and everyone wanted to know when they would host the next ball. Since 2006, these dedicated women have volunteered their skills and time to organise this event and The Unforgetaball has become a highlight in the Christchurch social calendar. Despite challenges, they have hosted a yearly event except for one year which had to be missed due to the Canterbury earthquakes. Undeterred, Linda and Tania forged on and in 2017 the Unforgetaball celebrated its 10-year anniversary. We asked Linda and Tania to share a little about their journey and they said they wanted to host a stylish, formal event that included families and friends of people with disabilities. They set about looking for a venue having no idea how successful it would be, hoping they would get 100 people along – but they got 200. They have continued to have 200 people attend every ball, the only difference is that the waiting list for tickets gets longer each year and now people from around the country travel to attend this event. Tania and Linda would say that they have worked with amazing people who have made this event possible but it is their vision and enthusiasm that

drives these events and ensures a wonderful evening for everyone who attends. It is a tribute to Linda and Tania that the people they initially approached to help with music, the fabulous DJ Chris Martin from Co-Motion and Bison Creative for the art and design work, are still involved with this event. Their wonderful decorator Christine from Acropolis Wedding Hire who was involved with the first ball remained involved until 2016 when she sold the business. Their vision to create the Unforgetaball has inspired other groups around the country to host a ball for young people with Down syndrome. However, we haven’t seen any groups host annual events. This is probably because of the months of planning it takes to organise the event. Usually, Linda and Tania start planning in February and it all starts with deciding on the theme and décor because yes - each year it is different! We would also like to acknowledge Linda and Tania’s families and friends as they also get involved in the huge task of assisting to set up and take down everything at the ball. Linda and Tania say that they get enormous pleasure seeing everyone enjoying the night and I am sure that everyone who has ever attended a ball would join us in acknowledging that Linda and Tania are volunteers that truly demonstrate the theme for National Volunteer Week “Volunteers – Heart of our Community”. Linda and Tania, you are the heart of the Unforgetable ball and are well deserving recipients of the Val Sturgess Memorial Volunteer Award.

Lily Harper Aged 29 , from Palmerston North Nominated by her siblings

Lily is an energetic, sociable and independent woman who grabs life with both hands. She lives with two friends with Down syndrome who own their own home. Lily has managed the transition from being at home to living independently very well. She works at Farmers three mornings a week, which she has done for many years, and is a beloved part of the team there. Outside of work, she enjoys spending time with her friends, whether at Creative Journeys where she participates in various activities, performing with the Jorjaz dance group, or training hard at swimming for the Special Olympics. Lily is a gifted communicator and has real empathy for others, wanting to make sure that everyone is included and happy. Lily enjoys travelling and has started a local trend in Palmerston North, which is to celebrate your 21st in the United States or another country. She has a passion for movies and television which has inspired her own pursuits in acting and dancing, and she enjoys performing in front of huge crowds

and has performed at many events throughout the community. Lily has also written and directed many annual nativity plays casting her family in a range of roles and finding creative ways of directing the play which includes introducing a new theme each year. Lily, is also an advocate for people with Down syndrome and has shared her thoughts in printed media and has featured on many digital stories that the NZDSA has produced. Lily has even starred in her very own episode of Attitude TV, The Lily Harper Show, where she was the host of her own talk show, inspired by her hero Ellen DeGeneres. Lily also co-presented with Simon Dallow at the Attitude Awards. Lily is sure to bring a smile to the face of anyone who watches her perform, and it is very inspiring to see Lily living a happy and fulfilled life, surrounded by people she enjoys spending time with.

Josh Cooke Aged 23, from Hikurangi Nominated by Sharon Cooke

Josh enjoys a range of activities but powerlifting and art are his two favourites. He has been involved in powerlifting for around eight years and art for the last seven years. He competes in both mainstream and Special Olympics powerlifting and has achieved well in both in 2017. The New Zealand bench press competition was a mainstream event. At this event he achieved first place in the under-74kg junior men’s division. He represents Northland in mainstream competitions and surprisingly represents Otago in Special Olympics. Northland’s Special Olympics does not offer powerlifting, so Josh joins his old Otago team for these events. Josh is also an entrepreneur. He wanted to attend the Special Olympics Summer Games, so he started a fundraiser and sold kumara, pumpkins, asparagus and eggs to meet the cost of the Games, accommodation and airfares. At the Special Olympics Summer Games in November, 2017 in Wellington he took first overall under-74kg

division with gold in squat, dead lift, combination and silver in bench press. Art has been another passion of Josh’s for many years. He currently enjoys his weekly art lesson at the Quarry Arts Centre in Whangarei. He has a particular fondness for painting sunsets and landscapes. The Quarry holds an exhibition once a year for those attending the art class. It is a highlight of the year for those involved in the art classes as it offers the artists the opportunity to showcase their painting and everyone hopes to see a few of their art pieces sold. At the 2017 exhibition Josh sold seven of his paintings. Josh is also a cadet at the local fire brigade. He is involved in many other activities like swimming, horse riding weekly, a church café team once a month and he loves cooking and food. Josh’s long-term goal is to have his own café which will incorporate his own art gallery and as a true entrepreneur his art will not just be for enjoyment but also for sale.

Caroline Quick Aged 29, from Christchurch Nominated by Shelley Waters

Caroline is a lovely young lady, she is a skilled communicator and she is committed to being a great advocate for people with disabilities. Caroline was born in England w h e r e s h e a t t e n d e d a mainstream primary school. Caroline was the first student with Down syndrome the school had taught and she probably taught them a thing or two also. Whilst she was at a mainstream secondary school, Caroline did a childcare course and received the Best Improved Student award for this course, which she was very proud to accept at an awards evening, even though she had scarlet fever. Caroline’s family immigrated to NZ when Caroline was 16 and she attended Allenvale High School in Christchurch. Caroline left high school at 19 and went to Polytech where she did a work skills course and passed with flying colours. Caroline’s first paid job was at McDonalds, which she really enjoyed and gained valuable skills but unfortunately, due to health issues, Caroline had to resign from McDonalds. Once she was on the mend, she went back to Polytech and completed a Barista Essentials Course – Caroline had to make four coffees in 30 seconds and she did it. She then completed the Supported Learning Hospitality Course which involved Barista training – level 2, hotel accommodation and cooking. She has also completed a sewing course run by the Salvation Army and a retail course run by Academy Training Centre. Caroline has volunteered for St Chads, Christchurch, helping with packing of the food parcels for distribution. Caroline is currently volunteering at a rest home for the elderly with dementia in Christchurch where she helps out in the library and with the activities for the residents and also helps in the Café at the Spreydon Baptist Church. Caroline was chosen as an individual to represent

people with a disability on the initial steering group of the Enabling Good Lives (EGL) initiative, initiated by Turiana Turia. This was where I first met Caroline, and I was so impressed by the way Caroline conducted herself and the contribution she made to this steering group. Caroline has just been elected as a representative on the Regional Leadership Group of EGL in Christchurch for the upcoming System Transformation initiative which is due to be piloted in the Mid-Central Region but will hopefully be rolled out nationally in 2020. Caroline has been a great advocate for people with disabilities. As well as being involved with EGL, Caroline has been heavily involved in People First and has served as Mid-South President and MidSouth Secretary. Another leadership role Caroline has been a part of is the NZDSA Self-Advocacy group – STRIVE. Caroline has attended meetings and workshops held around NZ with STRIVE and has also presented at a conference in Australia talking about STRIVE, which Caroline said was an amazing experience. Caroline has also presented with a fellow STRIVE member at the University of Canterbury promoting self-advocacy and has also attended World Down Syndrome Day and other events as a STRIVE representative. For all the events, meetings and volunteer work Caroline attends each week, she buses independently and if a venue is not on a particular bus route, Caroline is very confident at messaging people to sort out a ride. For the future Caroline is looking forward to having paid employment, going flatting with her boyfriend, keeping on advocating for people with disabilities and continuing her involvement with the NZDSA and having a fabulous life, and with the amazing set of skills Caroline has, I have no doubt this will become a reality for Caroline very soon.

Paul Gibson Life Membership

The NZDSA is proud to present our third Life Membership to Paul Gibson to acknowledge his commitment to raise awareness and advocate for people with Down syndrome while he served as the Disability Rights Commissioner and his ongoing support. Paul actively got involved in promoting World Down Syndrome Day by attending and speaking at NZDSA events, celebrating World Down Syndrome Day, writing thought-provoking articles in the media. Paul has also advocated for the rights of people with Down syndrome, showcasing the contributions that people with Down syndrome make to the community and educating the wider community on the value of diversity. Paul has also championed the STRIVE group and would always meet with the group when they had workshops in Wellington so that he could listen to their voices and to ensure that their advocacy message was included in relevant pieces of work. Paul actively worked with STRIVE over a few years so that they could develop key messages on

prenatal screening so that for the first time in history people with Down syndrome can be prepared and empowered to advocate on this critical issue. The STRIVE members have appreciated that Paul has championed them and that he has valued their perspectives. Paul also took active steps to raise awareness of the ethical issues pertaining to Prenatal Screening. He initiated and steered the side session titled "Our convention, our future, don’t be afraid" People with Down syndrome and their families open up a conversation on living in today’s and tomorrow's world at UN Conference of state parties COSP on CRPD in May 2017. Paul, we would like to acknowledge your valuable contributions to assist the NZDSA to achieve its vision that People with Down syndrome are valued and equal members of their community, fulfilling their goals. Paul, we would like to award you with life membership to the NZDSA and welcome you to our whānau.