Life Unlimited Infolink, Spring 2018

INFOLINK

CONNECTING YOU WITH DISABILITY INFORMATION

SPRING

2018

IN THIS ISSUE ENTREPRENEUR AND ADVOCATE CANCER DIAGNOSIS A HEALTH FIRST FOR CELIA NEW LOOK FOR ALTOGETHER AUTISM WEBSITE ANYONE CAN DANCE DIABETES LINK TO HEARING LOSS SARAH VERRAN WINS EMERGING DIRECTOR AWARD

PUBLISHED BY Life Unlimited A charitable trust offering health and disability information, advice and equipment to enable you to live the life you choose.

EverythingSENSORY we do helps to create HAMILTON GARDEN opportunities for people to OPENS make and be in control of their own life choices.

Life Unlimited began in 1979 as Disabled Living Centre (Waikato) Trust. In 1997 it became Life Unlimited.

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When Genevieve McLachlan received a letter from Government House on April Fool’s Day telling her she’d made the 2016 Queen’s Birthday Honours list, the thought it might be a practical joke crossed her mind.

But once her “real sense of disbelief” faded, Genevieve, who has cerebral palsy and a vision impairment, was thrilled to be named a Member of the New Zealand Order of Merit (MNZM) for services to people with disabilities.

The Hutt Valley local was recently appointed to the Disabled Leadership Group of national charitable trust Life Unlimited, and is the current chair of the transport working group for My Life My Way, a community initiative to make the city inclusive for all. The MNZM is fitting recognition of Genevieve’s life-long commitment to improve access for disabled people to all spheres of life.

“For me, the Order of Merit says it all,”says Genevieve.

But the investiture ceremony to receive the honour was only the second-most important day in her life, Genevieve adds quickly. Her wedding to husband Bruce takes first place. And like her wedding day, Genevieve insisted she walk under her own steam to receive the honour at Government House in Genevieve with Dame Patsy Reddy at Government House.

Wellington.

A photo from the occasion shows Genevieve standing confidently beside Dame Patsy Reddy with her insignia and ribbon pinned to her left shoulder. But, what’s less apparent is Genevieve holding on to the Governor General for support after the physically demanding day, she reveals.

“I was shattered afterwards, but it was really important to walk.”

The MNZM caps a string of awards for Genevieve that recognises both her contribution to the disabled community and her achievements in business since starting Adaptive Technology Solutions over 11 years ago.

The business offers assessments, training and support for people who struggle with their computer, or need assistive technology to read print or write text.

Genevieve started the business after almost seven years working for the Blind Foundation providing adaptive technology assessments and training for blind and low-vision clients. She felt frustrated by the existing equipment model that lacked flexibility, offered limited choice and didn’t take into account other difficulties people might face.

Genevieve saw a need for a new approach to help individuals access adaptive technology and wanted to deliver a more holistic service, not least because of her own experience living with dual disability. She uses technology to assist with vision impairment, but it also has to meet her needs as a person living with cerebral palsy - it needs to be lightweight and portable.

“I wanted to work with the whole person, irrespective of their impairment.

"I focus on helping people find what they need, where to source it and how to use it.”

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BREAST CANCER DIAGNOSIS A HEALTH FIRST FOR CELIA It was Martha Hancey who first spotted three years ago her older sister Cecilia had something wrong with her right breast.

Cecilia, 65, known to those in the Hancey family as Bub and to everyone else that knows her as Celia, was in the shower when Martha saw the inverted nipple.

A mammogram in the mobile caravan visiting Te Kohao Health in Hamilton East a few days later, confirmed the worst when three little dots were picked up.

Celia has an intellectual disability and for the last 15 years has relied on her sister to look after her best interests.

For Martha, who reveals there is an extensive history of breast cancer among the women in her family, that includes health checks such as mammograms.

“We went up to Waikato Hospital and talked to a specialist up there. She did a biopsy and then told us she would have to operate. Just as well, it had spread that fast, that quickly,” says Martha.

The breast was removed and Celia recovered quickly at home with Martha’s help and the friendship and support from everyone at Ngā Mara Ātea, Life Unlimited Charitable Trust’s marae-centred programme held 49 weeks of the year at Kirikiriroa Marae.

People with an intellectual disability aged between 16 and 65 can access the Ministry of Health-funded programme. Clients are introduced to tikanga Māori (living by Māori values) and te reo Māori (Māori language) in a safe and supportive whānau environment.

Celia’s one brush with any significant illness was the breast cancer and now she has been given the all-clear, she is able to stay on the programme because of her good health.

“She doesn’t have any high health needs so the ministry is happy for her to stay at Ngā Mara Ātea,” says Martha.

Celia was born in Wairoa in the Hawke’s Bay of Ngāti Kahungunu iwi, and grew up in a large family at Raupunga, a small settlement

Martha and Cecilia Hancey with Life Unlimited’s Barb Tane.

in northern Hawke’s Bay located close to the Mohaka Viaduct, New Zealand’s highest railway bridge.

At school, Celia’s aunty was called in to see the principal who said Celia had a learning disability and they could not help her.

There was no way the family was going to put Celia into an institution.

“She was brought up with us. My father would not do that. I know there’s a lot of children who were. Families were told they had to give their children up, but we wouldn’t,” says Martha.

The family - young cousins, nephews, nieces - all fussed over Celia, but she did not participate in any day programmes until she moved to Hamilton to join Martha.

“I decided it was my turn to look after her. Before coming to the Waikato, Celia did nothing, just stayed at home. I decided I was going to look at different things she could access,” says Martha.

Celia participates in music, kapa haka, plays the drums, weaves, sews and like others on the Ngā Mara Ātea programme, she helps out on the marae when there is a powhiri or tangi.

You can read the full article about Celia - and many of our other stories - on the Online Information Hub. Visit www.lifeunlimited.net.nz/hub

CELEBRATE WITH US ON 6 DECEMBER FRESH NEW LOOK FOR ALTOGETHER AUTISM WEBSITE

The Altogether Autism website has a fresh new look and is easier to navigate. You can also contact Altogether Autism through the website with Live Chat and get real-time answers to your real-time questions.

Check it out at www.altogetherautism.org.nz

Have A Go Day is an annual event that recognises the International Day of Persons with Disabilities.

Join us for a fun day out in Hamilton's Civic Square and take a mobility scooter or powerchair for a test ride or hop aboard an accessible bus.

Keep an eye on our Facebook page for more information closer to the date.

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WAIKATO STUDENT PROVES ANYONE CAN DANCE Any reservations Waikato University student Courtney Richmond had about leading a dance class of young disabled people soon disappeared as each of the young dancers began to emerge from their shell.

It was in July last year Courtney volunteered to lead a six-week contemporary dance programme in Hamilton as part of Life Unlimited Charitable Trust’s Sport Opportunity after-school activities, which provides opportunities for young people living with disability to get involved in a range of sports.

The 21-year-old hails from the Kapiti Coast and is in the final year of a Bachelor of Arts degree with a double major in English and theatre studies at Waikato University.

The Gallagher Academy of Performing Arts at the university is like a second home for Courtney, so it’s hard to believe she came close to giving up dance.

“I came out of high school dissatisfied with dance. I’d been doing it for so long because I’d been dancing since I was two and half or three. I kind of thought I’d done my run with it.”

Courtney comes from a rural background, born in Levin and raised on the family beef and deer farm in Te Horo. It was while at Paraparaumu College a teacher persuaded Courtney to apply for the Sir Edmund Hillary Scholarship at Waikato University.

Courtney enjoys seeing her students achieve those “little lightbulb moments” as they explore “how their body moves in space and with others”.

The scholarship, established at the university in 2005, numbers among its graduates students who excelled in academia, leadership, sports or creative and performing arts.

The scholarship provides up to $10,000 per year for full-time undergraduate enrolment with personalised academic support, access to leading sports coaches and tutors in the arts, as well as leadership skills and personal development coaching.

“Coming to Waikato and the work that I’ve done with Karen Barbour here, seeing this other side of dance – the culture side, the community side of it and seeing the benefits you can get from dance that aren’t just entertainment – I’ve fallen truly head over heels in love with it again.”

Barbour is a senior lecturer in dance at the university, mentors the dance scholarship recipients and chairs Waikato Contemporary Dance Projects Trust, which aims to benefit the community through increasing the accessibility of contemporary dance with regular dance classes, workshops and performance events.

This focus on opening up dance to the community and making

Keri Opai

Courtney Richmond outside the Gallagher Academy of Performing Arts at Waikato University

it more accessible so anyone can experience the benefits of movement reignited Courtney’s passion.

“I’m really interested in working with different abilities. My grandfather John Williams, who is my absolute idol, passed away a couple of months ago. He battled with strokes for the last 15 years of his life, so he went from being this super capable guy to almost being defined by what he couldn’t do.

“I became really interested in alternative therapies and using dance and finding out what else dance could offer.”

Courtney says she would start the Like Unlimited Sport Opportunity After School programme by asking participants to introduce themself and share their favourite move.

“They were like ‘I don’t have a favourite move.’ And then by the end of it they’re like ‘Me, me, me. I wanna do my move. This is my move.’ They were wanting to show off.

“So it’s not the fact that they’re getting better at dancing – which they are – but they’re getting more confident in themselves.

They’re growing as people.”

Courtney felt more self-assured when she returned to facilitate the dance programme for Life Unlimited in term two this year.

She had since completed a paper in community dance practice and participated in community classes delivered by renowned inclusive performance company Touch Compass in Auckland, which Courtney says “set my soul on fire.”

“I haven’t really been involved in an all-ability class other than facilitating them, so I was able to see the other side of the coin and participate and see what it was like to work with other people.

“The knowledge I gained from that enabled me to be a better facilitator because I was able to see: oh, that’s what that feels like; what that sounds like. And definitely things like the sort of language that was used, because language is a very important part of inclusive processes. Instead of using ‘do this’ and ‘do that’ – it’s ‘let’s try this’, ‘let’s try that’.

“I think anyone can dance, everyone has that potential. And it might not always look pretty but we can do it. Everyone can nod their head to the beat and I think that’s been reaffirmed since working with Life Unlimited.

“I learned just as much from them as they learned from me.”

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HEARING AND DIABETES LINK SARAH VERRAN JOINS Having your hearing tested is a “smart idea” if you’ve been diagnosed with diabetes.

That was the message Life Unlimited hearing therapist Sue Jennings had for members of the Diabetes NZ Waikato branch Hamilton support group.

For the 250,000 New Zealanders living with diabetes, many of the complications associated with the condition are well understood.

Prolonged raised glucose levels in the blood can lead to damage to nerves (neuropathy) and blood vessels (vascular disease), commonly affecting eyesight, kidneys and the health of feet and lower limbs.

Sue Jennings (left) urged people diagnosed with diabetes to monitor their hearing health at a talk attended by David Malloch, Diabetes NZ Waikato field officer Angelica von Reitzenstein and Lorraine Malloch.

What is less well known is the growing body of research that confirms an increased prevalence of hearing loss in people with type 1 and type 2 diabetes. That’s because the inner ear also relies on healthy blood vessels to support hearing.

Sue says although people with diabetes are more likely to be affected by hearing loss, many of them are not aware of the risk.

“For some people, it’s news to them. There’s an understandable focus on taking care of your eyes and feet, but there isn’t a big push on hearing. But it’s definitely part of the picture.”

For Sue, that’s a concern. In her role supporting New Zealand adults living with hearing loss, she comes face to face with the impact hearing loss has on quality of life, particularly the way it can cause people to withdraw from social life, leading to isolation.

That’s why Sue urges people to be more conscious of changes to their hearing, especially after they’ve been diagnosed with diabetes.

“Ask yourself: Am I missing the punchline? Is the TV louder than normal? Am I saying ‘pardon’ more often?”

But the best course of action is to have a hearing test right at the start of the diabetes journey. Having that initial baseline makes it easier to monitor hearing levels and respond before hearing loss impacts on daily life.

And the good news is, a hearing test from a Life Unlimited hearing therapist is completely free and painless. All it takes is time. Call 0800 008 011 to book an appointment near you.

LIFE UNLIMITED BOARD

Sarah Verran of Cambridge is the winner of the Institute of Directors’ (IOD) Waikato branch Emerging Director – Disability Sector Award.

The IoD awards, announced at lunchtime on 23 August 2018, recognise newly engaged directors who demonstrate strong commitment to developing governance capability, and to helping contribute to well-governed organisations in New Zealand.

When Sarah Verran’s 10-year-old daughter was diagnosed with a brain tumour, Sarah’s life, and that of her family, changed completely.

The slow growing tumour had been developing since birth.

It transformed the once happy, bright and healthy young girl into someone with a disability, who now needs 24-hour care and support in order to live.

After three years of caring for her daughter, and with a background in IT, tourism and media, Sarah’s new perspective on life has drawn her to focus her energies on the social and disability sectors, particularly governance.

“I have found strength in becoming the advocate for my daughter, to be able to speak about our experience to challenge thinking, offer some objectivity and add value to facilitate change,” Sarah says.

As a way of pursuing a governance career, Sarah joined a community of practice, Enabling Good Lives, and applied to be on a patient and whānau care board through Auckland District Health Board.

She says developing her governance career is a way of achieving her objective of advocacy and change within the disability sector.

For her prize, Sarah will sit on the board of Life Unlimited for a year. She will receive $4000 in professional development learning from the Institute of Directors, plus IoD complimentary membership and attendance at IoD events.

Sarah Verran with Life Unlimited board chair John Dobson.