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Shannan's Story

Shannan was born in the small Hawkes' Bay town of Wairoa and at six his family moved to Whakatu, a settlement between Napier and Hastings. As a newborn he had serious health complications and at six week's old, was sent to Greenlane Hospital to receive specialist treatment.

As his mum Meri recalls, when doctors told the family that Shannan wouldn't live it was devastating. "In the beginning, I cried. It's like they gave him a death sentence before he had a chance to live," says Meri. "The more they told us to prepare for the worst, the more determined I was that my boy would stay with me."

Shannan was eventually discharged after a long hospital stay.

It's a message that Shannan continues to receive from the medical system, most recently when he turned 29. "They told me that I wouldn't have another birthday. It's hurtful to hear that. It goes into your soul and it effects how you feel about your life," he says.

Shannan is now 39 and he's learned to block out the negative prognosis that continues to be given to him by his specialist. As a result of his experience he believes that medical practitioners should consider the impact their words have on the people receiving them and reconsider how they communicate with people who have ongoing health needs.

The family first encountered CCS Disability Action, then known as the Crippled Children's Society, when they needed to make the return journey to Greenlane Hospital. "I didn't think of Shannan as being 'crippled', so my first thought was: Why would they help us?" says Meri.

It proved a helpful connection. CCS Disability Action found the family a flat within walking distance of the hospital and organised transport from Whakatu to Auckland. Later, when it became clear that they needed to make a permanent move to be close to the hospital, CCS Disability Action also helped Shannan's Dad Riki transfer his job with the New Zealand Railways from Napier to Penrose.

This early support had a lasting impact on the family, support that's come full circle today. "We were amazed that all these things had happened for us. We have always been grateful and I always hoped I could give back. I never dreamed it would happen," says Meri.

Shannan experiences amnesia, which means that much of his life's journey—his childhood, teens and early 20's—is built up through experiences and stories shared with him by his close-knit family.

He is one of five siblings all of whom live in Auckland. He is particularly devoted to his youngest sister Luanekahea. "If my baby sister calls and needs something, I'll drop everything and go," he says. As an excellent cook, not surprisingly, Shannan regularly gets the call up.

Shannan is also extremely close to his nieces and nephews. He is regularly on call for babysitting and Meri jokes that if the little ones want someone to play with, or a treat, Shannan is their first point of call. Likewise, if the teenagers in the whānau need someone to talk to—or, as anyone who has a teen will relate to—borrow money from, he is there for them.

"I call them my kids," he explains.

Despite growing up in such a full and nurturing household, Shannan has experienced the isolation that can come with being different. His impairment means that he is slower to process information than people without a disability and, perhaps because of this, bullying has been a regular part of his life from a young age.

"I was bullied for most of my life. It's one thing for kids. But adults should know better. It was like a stab to the heart and it meant that for a long time I didn't want to leave our house," he explains. "When I got really sick, I did want to give up. I hated being sick and being bullied. My kids and my whānau are what keep me going."

The Kohi family have always felt a deep connection to their Maōri culture. Over the years they've undertaken practices such as raranga weaving (weaving objects such as baskets) which gave Shannan a challenge and renewed sense of purpose when times were difficult. They have also used Rongoā medicine – Maōri medicinal plants – a practice that is currently seeing a wider resurgence. "Our goal has always been healing in a holistic sense," says Meri.

A connection with CCS Disability Action's Karanga Maha group has proved a natural extension of these values. More importantly, it's been life changing for Shannan's confidence and vision for his future.

Karanga Maha, which translates to mean "Many Voices", is a growing group of Maōri who identify as disabled or who have a family member with an impairment. It's led by a grassroots community steering group, of which Meri is a key and highly valued contributing member. This is her opportunity to give back to the organisation that supported her and her family nearly four decades ago.

Shannan explains that at first he simply went along to the group's hui (meetings) to accompany his mum. He didn't feel confident enough to speak to anyone or to take part in the whakawhanaungatanga (traditional greeting on a marae) – something that is typically an important role for the eldest son.

In three years all of this has changed. "I didn't expect to be a part of Karanga Maha. They let me have my own voice. Others, they talk "at" you, not "to" you. But in Karanga Maha I felt accepted, wanted, not judged. I felt like I had something to give and that what I had to say was important."

Shannan limo

Now, Shannan has a key and valued role mentoring and supporting others as well as fulfilling his duties on the marae. "I learnt to say my Pepeha which has given me the space and the confidence to just "be". I can say who I am and what I'm about with great confidence now."

In 2015 he was asked to be the guest speaker at a Matariki Ball held at Waipuna Lodge in Auckland and in 2016 he was asked to be a MC for the Matariki Ball held on the Waitangi Marae in Northland and has also MC'd events run by Karanga Maha. He is now one of five Rangatahi (youth) leaders for the growing number of youth who are attending the group's hui.

Importantly, along with a growth of confidence and opportunities to take the lead, Shannan has also made a number of strong friendships. "Before, I had one best friend and that was my Mum. Now? I have heaps."

Shannan remains humble in the face of the successes he has achieved of late. He says he is "shocked" that his story resonates with others, but, through his story he has a powerful message of acceptance and inclusion to share.

It's taken a tremendous amount of determination for Shannan to get to where he is today. So perhaps unsurprisingly, he recently embarked on a new challenge. Earlier this year he enrolled in a Bachelor of Māori Performing Arts through Te Whare Wānanga o Awanuiarangi. It's a demanding, full time course that will build and extend Shannan's skills and knowledge. It was not something he had considered until it was suggested by a CCS Disability Action staff member who had seen Shannan begin to shine. Once he has completed it, he will be the first in his family to gain a degree.

"I wouldn't be studying if it wasn't for Karanga Maha. This group has bought me a long way. I've never studied before. I'm still shell-shocked that this is happening," he says.

Both Shannan and Mum Meri believe the study will open up new and exciting possibilities for the future that doctors said he would never have.

"I'm very proud of my son and how far he has come. We take it day by day but he has tenacity. He has leadership inside of him and I believe he can give back to others with a disability. I see how people gravitate to him and think, 'Imagine him touching the lives of strangers?'"

For Shannan his simple aspirations are having a lasting effect on those around him. "When I was about 5-6 my dream was to grow up and be a man," he says. It's a vision that he's truly living up to today.

Shannan thumb

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