Life in a Pandemic

Life in a Pandemic

LIFE IN A PANDEMIC PUBLISHED BY LIFE UNLIMITED CHARITABLE TRUST, 2020 ISBN: 978-0-473-54087-6 EDITOR: MARY ANNE GILL COVER: Millie Matahiki at Ruatanuika lookout on Titirangi/Kaiti Hill in Gisborne in front of the circular steel Te Maro sculpture which represents a significant tīpuna (ancestor) for Tairāwhiti region.

PHOTO: ALAN GIBSON THANKS TO:

O

n 21 March 2020, Aotearoa entered a situation no one had ever encountered, or imagined, before. We were suddenly at Level 2 of a new pandemic alert response system, due to the outbreak of Covid-19. Four days later, we were at Level 4 of the alert system; a full Lockdown confining people to their home bubble.

The Covid-19 Pandemic Lockdown required fast action and adjustment to our everyday lives. For disabled people and their family/wh훮nau sudden adjustment can require significant organisation and disruption.

This book captures a snapshot in time for people living with a disability and/or autism and their family/wh훮nau. It shows the resilience, strength and love of all those involved. Some bonded, some were lonely and bored, some turned to technology while others found solace in their culture and ancestral lands.

Wherever possible the story has been told in the words of the person involved.

We interviewed people from Auckland down to Christchurch.

Those involved were asked to share what Lockdown was like for them and their life.

Thank you to the skilled writers for their ability to capture the essence of what mattered, to the photographers for their stunning images and to our graphic designer for a design which in its simplicity is very powerful.

Thank you also to those who supported the production of this book. Without the Ministry of Health, the Brian Perry Charitable Trust and Fuji Xerox this book would not have been possible.

Big thanks to the Life Unlimited team who at short notice found a wonderful mix of people to interview and to the commitment of Mary Anne Gill who both wrote stories and managed the project.

Also thank you to the organisations who supported access and suggested some people to interview.

The last word goes to those involved in letting us into their homes, sharing their story and being open to participate.

Your independence and resilience, regardless of what is thrown your way, is admirable. Thank you and may every opportunity be presented for you to continue to live your life in your way.

Wh훮ia te iti kahurangi ki te t큰ohu koe me he maunga teitei Seek the treasure you value most dearly: if you bow your head, let it be to a lofty mountain

MEGAN THOMAS Chief Executive Life Unlimited Charitable Trust

ALAN GIBSON

4

Brent Walker KIHIKIHI

“I

n January I started building my own house in Kihikihi with my brother.

About a month before Lockdown I changed my situation and got in a disability provider to look after my Enabling Good Lives (EGL) budget.

Life before EGL was terrible, so frustrating. The amount of funding was not very good, and I had to ask permission for everything. It’s good I’ve now got full control.

I lived with my parents up until I was 20 and then moved straight to my home in Hamilton with someone else, he needed support as well.

The past four or five months I’ve got back on track in figuring out my health issues and so now I’m doing part time work for my friend’s building company, doing some admin, payroll, things like that.

I sent my support workers away and went into Lockdown with my mother and brother. I had four people working for me at that time, I now have three.

Mum and Dad run a joinery business in Te Awamutu and my brother is used to helping me out.

My care workers understood the situation. I reassured them that everything would be fine, they would be paid, pretty much as usual, that there was nothing to be afraid about.

We swapped a few messages here and there.

Lockdown was alright, the weather was nice and I watched lots of You Tube. I had Zoom meetings and appointments.

I watched Ozark and Tiger King on Netflix.

I read books on the computer, Kindle stuff.

I used to play video games quite a bit with my friends, I can’t do that. I can’t use my hands. That sucks.

I had PPE (personal protective equipment), the people from EGL dropped a shipment off to me.

Considering there was a shortage, I did pretty well. We had masks and gloves, sanitiser and I had no health issues.

I was living in Fifth Avenue, in Enderley (Hamilton).

There were a lot of people on the roads, it was crazy, there were cars and trucks, all day and all night, heaps of people were out and about cycling and walking.

Just before we went into Level 3, I decided to have my support workers back.

My mother and brother were keen to have a break.

It was lucky that Covid-19 didn’t mess up all the house plans, so moving day on 26 June into my new house went okay.

I need 24/7 for everything. I’m doing okay, I’ve seen some other people with this condition not doing as well.

I started to walk until I was two-years old and then I stopped walking. The doctors just thought I was lazy.

When I was younger, I could do a lot more with my arms, could support myself a lot better.

When I was 14 or 15, I could use a pen, and write. I could hold my thumb properly. Now I only have the right thumb and that’s about it.

Bits here and there started going. I’ve lost heaps compared to five years ago.

About a year ago I lost the ability to eat and drink.

I can’t swallow and chew properly. It’s probably the hardest thing I’ve ever had to adjust to. It’s because the muscles in my throat can’t swallow.

In the last two months I’ve lost quite a lot more. I can’t do anything much these days.

There is treatment but not in New Zealand.

My lungs are always in decline. I have to hold my head up, that will be the next to go.

It is what it is, it just feels normal to me.”

5

ALAN GIBSON

6

Jessica Hita, Tuhoro and Te Aurere Hita-Paki HAMILTON

“W

e moved in with Mum and Dad in their four-bedroomed Horotiu house. There were eight of us in all.

We enjoyed it, we found it a bit easier. It was good having them all around. Everyone who stayed here are Te Aurere’s favourite people.

We thought during Lockdown we were going to be with Te Aurere every minute of the day and he was going to miss out on his kaiako and key workers.

We found Lockdown was really a blessing for us as a whānau.

The absence of wider whānau was certainly challenging but thankfully we still had Nana, Koro, uncle and each other there to help and carry the load of looking after Te Aurere.

It was an opportune time for us to teach them and help create a greater understanding of what takiwātanga (in his own time and space) is and how it affected Te Aurere.

We had to help Te Aurere through the change of his routine and try get him to understand this was our new ‘normal’ for the time being. We had to become creative and innovative in ways we could engage with him and either continue his normal activities or otherwise implement something new in the absence of these activities and routines. It was important that we ensured Te Aurere was stimulated and still had opportunities to learn and grow during Lockdown.

Our support worker Suzanne from McKenzie Centre was amazing, we had weekly Zooms scheduled with her just to touch base and share our progress and receive any advice for challenges we were facing.

His behaviour and his sleep improved immensely; we got him into a pretty good routine. At the start he had one sleep, but that was half an hour. You literally put him to sleep and he was awake again.

In the third week of Lockdown, he learned how to climb the fence. We came outside and he’d jumped over the fence and was out on the driveway. Luckily, we live rurally and in a small community, but that was him telling us he’s sick of being within the gate, so we did more walking, more bike rides.

Prior to Lockdown he did have a lot of anxiety going into different environments.

In terms of his development he came on so much more after Lockdown.

We found that we could engage and interact with him in ways that would benefit him, his learning and it ultimately made him comfortable and helped to create a clearer understanding of the world around him.

Some of our greatest achievements especially with his speech were during Lockdown and this was because of the way in which we interacted and subtly intruded in his space.

He struggled a lot with sensory processing coming out of Lockdown. He is sensitive to sound and light.

Obviously, that came down to him not being exposed to different environments.

We were a bit hesitant to send him back to kōhanga.

It wasn’t a knock on anyone or the kōhanga, it was more we had done so much good work, were we going to lose it?

We saw such progress as a result of us spending more time with Te Aurere during the day compared to before Lockdown where it was just before or after work. It made us realise that we have the necessary skills, knowledge and experience to help him navigate through this world and support him on his takiwātanga journey.”

7

ALAN GIBSON

8

Stewart Colin John (CJ) Harford GISBORNE

“L

iving with my friends was a good thing about Level 4, but there were things that were not very good, so I had to get out of there. But that was okay, I have always been unsettled, always ready to move, it’s just what I was used to.

There were times during Lockdown when I was scared out of my mind, but I tried to be positive. Knowing I had this home to go to made me feel safe. Strong.

At the start of it all I was pretty confused, then it just got really, really boring. I passed the time playing games like Warframe, Grand Theft Auto V, Dragon Ball Xenoverse 2 , Mass Effect: Andromeda, TERA and my favourite, Minecraft.

I didn’t have any space, no privacy, but it was semistable so that was a good thing. I was also lucky to have my partner, Tristan, who lives in Canada. We kept in touch and that helped a lot. We really care about each other and he’s been with me all the way.

Throughout my life I’ve lived in more than 30 places and you’d think that all the bad situations I have been in would make me a bad person, but it hasn’t. I still try to be a caring person, try to make people laugh.

When I got told that I had my own flat with a new flatmate, Alan, it was amazing! I could have my own place, my own things. I could finally settle.

I can flip, I can have a bit of a breakdown, but I tend to turn on myself. I wanted more stability to prevent that from happening and now I have that.

Before Lockdown I was already doing lots of new things. I was getting budget advice, whizzing though my literacy course, and going to polytechnic to learn about life skills and horticulture.

It was good to get back to all that again and after Lockdown finished, I also got to go back to yoga on Fridays. I love it, it’s so relaxing I just about fall asleep.

And I have a job! Every Friday I help set up and pack down the yoga room so that is two hours of work every week.

Now I have my own money it makes a huge difference.

We are going planting trees tomorrow and I was able to go and buy some gumboots. Brand new! I could get my own television, my own cell phone, my own PlayStation.

I just used to sit in my room, not eating, so I was really skinny. My aim to get fatter is coming true!

Now I feel so free, I feel like I finally have a chance to trust my support people, to talk about the things that have happened to me. Having people in my life today that I know are going to be there tomorrow is awesome.

Doing the right thing during Lockdown, even when things were very bad, reminded me of how capable I am, how tough I can be.

It was worth it to get where I am now and this year, I actually get to have a birthday party. I have never had many, I didn’t even get a 21st, so it is going to be amazing to have a special celebration.

For our after-Lockdown superhero party I wanted to dress up as Sans, from the game Undertale, because of his superpowers of positivity and resilience.

He might look weak but, like me, he’s actually very, very strong. And he always tries to do the right thing.”

9

ALAN GIBSON

10

Julie and Harper Veli NEW LYNN, AUCKLAND

“W

hen Lockdown came, I think it just didn’t sink in.

The first week was okay. We got up early, went for walks and I would show Harper McDonalds is closed and all these places are closed.

We had to go walking early in the morning, so we were walking at 5.45am. That’s because when he sees people he will just go and touch people.

He would say ‘there’s no people’ and I would say ‘it’s Covid-19’.

It was hard at first but the school was trying and then as it went further along, the government came out with the TV channel and all those things and I thought ‘nah, that’s not going to work for my kid’. I mean I liked Suzy Cato, but my kid did not care.

There were only certain things they did on Zoom which would hold his attention. The singing was good, sometimes a bit of drama was okay. You try and Zoom with the rest of them and they were saying hi to each other all the time. He was missing school and my parents.

Come the third week I was struggling, I was struggling, this guy was annoying, we were just annoying each other.

In the third week I decided to take him off the clonidine.

He was just sleeping and of course I was thinking ‘I can do all this stuff while he’s asleep, I can just have quiet’, because he’s so loud.

I also reduced his risperidone which was supposed to help him focus but it did the opposite.

The first few days it didn’t make a difference, it took more than a week.

By week four he’s realised what Covid-19 is. He’s seen all the ads on the street, on the bus shelters, on the TV. The supermarket was the thing (during Lockdown).

I could not leave him at home so I would drive to the dairy and buy ice cream or a pie and then drive to the supermarket.

I realised you could get an appointment if you shopped in the middle of the night for Countdown. So, I would get the last appointment at 8 o’clock at night. And I would leave him in the car and quickly get my shopping done.

The school sent out a survey and asked the parents when would we be comfortable sending our kids back and I said, ‘Level 2’. Not many others said that!

I was going to work in the weekend and doing work in the week.

I would catch up on the paperwork, there’s only so much paperwork you can do from home.

I’ve got my friends. Everybody is kind of separated.

The closest people are my mum and my dad. They know everyday stuff.

My friends, they know what we go through, but they don’t know, know. They don’t see it; they just know from what I tell them.

You know when you go to a park, you just want someone to play with him. It would be nice for normal kids to just engage with him.

But he comes across as this weird, scary kid that other people want to get away from. I want to take him to the park, but it ends up being not a good experience. I know it seems like something small.

From what he sees on TV and on social media, he sees people engaging, socialising, talking and laughing, he wants someone to do that with. He understands, he remembers stuff, he has his own way of communicating.

What’s going to happen to him when he’s 21. Is he going to improve?”

11

ALAN GIBSON

12

Michael Pulman HAMILTON

“W

e were as set up for Lockdown as best we could be. It was a pretty hectic time.

We had about a week to get ourselves ready so that involved me having conversations with each of the staff. One staff member was quite afraid to come in because she was over 55.

It was quite stressful because obviously I was trying to balance staff needs, make sure we had PPE (personal protective equipment), get the signage we needed, and trying to make sure my partner Jess was okay as well.

The biggest worry before Lockdown was whether I would have any staff.

Jess and I were having conversations that week about what it looks like if I don’t have any support, what it would mean for our relationship if she would have to be my primary care giver.

We would have struggled with that because Jess is my partner. We struggled to get enough PPE equipment. Providers were scrambling; some were trying to import from overseas which isn’t exactly safe.

There was one situation two weeks into Lockdown where EGL (Enabling Good Lives) were working with a local company to provide PPE. They delivered mine to the wrong address and when we went to that address two doors up, it wasn’t there. They said nothing got delivered, the company swore black and blue that they’d delivered it and when I tried to get more delivered, they told us ‘we don’t have any’.

I played lots of PlayStation. The first week Jess and I tried to really spend a bit more time with each other than we would (usually. After a week it was pretty much doing our own thing.

I was still actively trying to keep busy with journalism and stuff. I wrote a few blogs during Lockdown and freelance articles for different organisations so that kept me busy.

It was stressful as well because all the opportunities were closing at the same time. I was trying to keep that door open.

I really missed going out in the first couple of weeks. A lot of people ask me what I’m doing when I drive up and down the street with my headphones on. That’s really my time to think about things, that’s where I make my big life

decisions and have the hard internal conversations with myself that need having. I missed that.

Lockdown for me was probably seven out of ten.

My staff did an incredible job, the ones that I had.

Everybody was just so adaptable which I’m incredibly grateful for.

We didn’t end up applying for a wage subsidy, my worker who could not work used all her annual leave which I felt was unfair.

People with a disability suffered the most, particularly those without good support around them. My faith in Enabling Good Lives had been tested before Lockdown. The principles are good but it’s a different story doing it on a day to day basis.

We were crying out for disability leadership prior to Covid-19 and I think Covid has just exposed that we’re just at the bottom of the pile. We shouldn’t be sitting here saying because of Covid we’re finally seeing the light. Why didn’t we see it before?

I do see myself as a disability leader and take great pride in the advocacy I do carry out.

Living with a disability doesn’t make you the sole authority on the issues facing the sector (though) because your situation is different from somebody else’s.

My biggest take out from the whole Covid experience is that there’s still a vulnerability to the existing supports and it’s been exposed even more.”

13

JEFF McEWAN

14

Cheryl Kayes LOWER HUTT

“T

he hardest thing about Lockdown for me was not seeing my Mum. I visit mum two or three times a week. She lives a few blocks away. It takes me half an hour to walk there.

My brother was looking after Mum but I still worried about her because I couldn’t see her.

I rang Mum a lot to keep in touch. I rang just after dinner every day. I can’t live with my mum because she can’t look after me now. I came here nine years ago.

Helen was my carer when I was young and I helped her a lot at Karahands (respite service). I am very close to her and I couldn’t see her either. I phoned Helen during Lockdown.

I like to know what’s happening. Waiting to hear when I could see Mum and Helen again was hard.

I was so excited when Level 1 was announced. I said take me in the car, let’s go! For the first few visits they took me in the car. It was so good to see Mum and see that she is okay.

Helen came to visit me after Lockdown too. She’s very busy looking after the kids (at Karahands) so she can’t come a lot. I understand that and I know that she still loves me.

I didn’t find Lockdown too bad. We did lots of different things to keep busy.

I love listening to music on my CD player in my room with my headphones and I like singing too.

I like Elvis, the Bee Gees, Roy Orbison, Cliff Richard, Buddy Holly, Gerry and the Pacemakers, the Spice Girls, Kylie Minogue, S Club 7, Britney Spears and Katy Perry.

I have a Cliff Richard calendar and pictures of Elvis in my room and a handbag with photos of Elvis on the front.

I love Katy Perry and really wanted to listen to her but we couldn’t get a CD because of Lockdown. My carer Lillian and her husband downloaded Teenage Dream and another Katy CD. It was really good that they did that for me. I listened to them a lot.

I usually do baking at Laura Ferguson (recreational programme) and singing on Tuesdays. I liked baking at home during Lockdown. I like sweet food but I can’t have

too much because it makes my tummy sore.

We made baskets for Easter and had an Easter egg hunt around the garden. I found most of the eggs and shared them with my housemates.

We watched movies to pass the time in Lockdown. I love musicals. Our favourite movie was Peggy Sue Got Married, and we watched Top Gun, Mamma Mia! and Baywatch.

I also made a rug for my room. We made pompoms with fleece wool that the staff got for us and we stuck them on. It took quite a while, about two weeks. I enjoyed doing that.

I like to keep busy and to help around the house.

I hang out the washing and bring it in and I vacuum the whole house once a week. I rinse the dishes and stack them in the dishwasher and I help my flatmates make their beds in the morning.

I also help the staff with preparing dinner.

I like keeping active. I played basketball in the Lower Hutt league and was in Special Olympics for swimming and basketball for many years. I got a gold medal and was selected to compete in China.

I was so pleased I could get my walking shoes out and go walking in the community and see Mum again after Lockdown ended.”

15

ALAN GIBSON

16

Tyrone Cook HAMILTON

“B

efore Lockdown I was going out, going to the gym, going shopping, met up with my mum once or twice a week and my support worker would take me op shopping, I love op shopping.

And then Covid-19 happened.

At the time there were five of us living here, then Steve died. He had Huntington’s and it was in the last stages. He came home and we hoped he could hold on until Level 2, but I think he decided ‘I’m home, I’m comfortable, I’m out of here’. He wouldn’t have wanted to die up there in the hospital, he was home and with his flatmates.

Every time they put those ads on TV, the alerts sound would be no good for me - it would make me anxious.

I tried to mute the ads when they came on. But the good thing was I had my phone on vibrate so when they sent out the emergency alert from Civil Defence, it came in as a vibrate, it didn’t make that horrible noise. I turned off all the noises in my phone during Lockdown.

We did try to get online shopping. I signed up for the priority shopping at Countdown but when we first went to do it, it was all booked out. And the closest we could have got was a week later.

We thought ‘yeah we aren’t waiting a week for food’.

We managed to find some slots but one of our staff members went in for us.

I’m hoping if something happens like that again they’ll have more thought to things like that.

I handled Lockdown pretty well.

During Lockdown social distancing is important, everyone must do it. Autistics everywhere ……. ‘We’ve been telling you that for some time!’

Here’s everyone else freaking out and here’s me saying ‘Dude, this is nothing new to me.’

For once everyone is doing what I try to do on a daily basis.

The thing I liked about Lockdown was that people were suddenly thrown into my world. Finally, they’re learning why we do certain things.

Now that we’re down to Level 1, I don’t think anyone learned anything. Everyone is now thinking ‘we can go back to normal now’.

Maybe after this Lockdown people may say ‘now I

understand why this person acts like that’, or ‘why that person doesn’t like crowds.’ Whether people want to be educated, is a whole different story.

We only had the Level 2 masks and we finally got the gowns for the staff in Level 2. Not long after going into Level 1, we turned up home one day from an outing and there’s a big box with some more masks.

It was kind of a bit late.

We were told that if any of us got sick, even a cold, we would be quarantined into our room and have meals brought to us. It didn’t happen to anyone. Luckily, nobody got sick.

Except Steve died.

The thing I liked about the Lockdown too was every time Jacinda went on TV, she had an interpreter and you don’t normally see that. Apparently, there were some complaints about the interpreter being too animated and I would say ‘that’s our language’. I was impressed she always made sure there was an interpreter on the corner of the screen.

I would go into Lockdown again. I’ve done it already before, I think it would be a lot easier this time because I know what to expect.

Although my dairy remained open, they executed a one in, one out policy and the streets were safer for me to cross.

I would like these things to remain.”

17

ALAN GIBSON

18

Millie Matahiki

NGĀTI POROU / NGĀPUHI / GISBORNE

“T

ēnā koutou katoa, tōku ingoa Millie Matahiki.

I was actually brought up at Tokomaru Bay with my nan, but she moved to Gisborne and then my great-uncle died, which I found hugely upsetting. I tried to take my own life. It was a very silly thing to do.

I felt I needed to be in town with my friends and whānau and support team and I lived with Nan again for a while, but really wanted to be more independent.

That was how I ended up in emergency accommodation at Albert Lodge, then I got stuck there!

I had this dream that I was going to be in a proper flat but that was all smashed. I felt really upset about that, as though I was in prison. But I knew I had to do the right thing and stay in my bubble.

Day one of Lockdown was really hard, I felt really negative, worthless, all I could hear was ‘virus, virus, virus’, echoing in my head. But I followed the rules to keep myself and everyone else safe, and that was a big responsibility.

At 7am my whānau would have a Zoom meeting where we would do our exercises. That helped keep me more positive, but I wasn’t sleeping, my mood was really low, I just felt like it would never end.

Every year, on April 25, I make sure I am at home on the East Coast so I can join the Anzac Day commemorations. But this year I couldn’t go because we were still in Lockdown. I felt really emotional about that, standing at attention at the mailbox was something, but just not the same.

Even though Lockdown wasn’t the best time of my life, I knew what I had to do so I just kept telling myself ‘be brave, don’t mess this up’. I knew that at the end of it some really good things were going to happen. The most important thing was being in my own home.

I have never actually lived in a flatting situation so I was a bit unsure about how it would turn out. But at the end of Lockdown when they said they had a place

for me and it was going to be with two other girls I was so excited. I thought ‘that’s more like it. . . . put me in there!’.

Everything has changed. I feel happy, I feel free, I have my privacy and no longer feel like I am locked up.

I can dance around and listen to my music. I’ve always loved music, especially reggae. When I was younger the band Ardijah came up the Coast to film a video and I managed to sneak into shot. It was cool!

The Lockdown was hard but I learned a lot – listen to Aunty Jacinda, stay in your bubble. Doing all that taught me that I have a lot more resilience than I thought and with that, you can do anything.

Growing up on the East Coast te reo Māori was my first language, we only ever spoke Māori. I am so blessed with my culture, my whānau, my community.

Since going through the Lockdown I know I can do much more and I feel like I am getting stronger and stronger every day. I’m interested in learning more about rongoā Māori. I have all these hopes and dreams, things I want to achieve while I am still young, so I have lots of things to focus on.”

19

ALAN GIBSON

20

Darling-Mei Brown HAMILTON

“L

ockdown was pretty good because I could TikTok and I did classes with my tutors. I was calling my tutor and my friends during Lockdown.

I downloaded TikTok on the app, it was easy from the store. I have two accounts; I use one for my Snapchat. I have followers from all over the world.I follow people on TikTok and some people think I’m famous on TikTok. Everyone comes to my brother’s house and we do some tiktokking and my sister does tiktokking. I like changing the look on TikTok. I have stars going through my face and glasses. I jump out of the rubbish bin.

I did a video every day. My best song was Bob Marley, Three Little Birds.

Singing: “Don’t worry about a thing, ‘Cause every little thing gonna be all right.

‘Don’t worry about a thing, ‘Cause every little thing, gonna be all right!”

I went live on some Facebook groups. I do cooking on TikTok as well. Eggs on toast.

Mum teaches me cooking. I do my bed in the morning as well.

We did karaoke, cooking, waiata, Life Fit online. I want to play some sport now. I want to play netball, I want to stop people shooting the goals. I like javelin and I like rowing. I do star jumps at fitness and I did Special Olympics at Fairfield College.

Harata is my best friend at the marae and Barry is my favourite. Barry is a twin and I can tell the difference between Barry and Philip. Ayla is my friend too and Crystal.

I was not sad about Lockdown, I was excited.

Lockdown was about coronavirus. People spread it around. I washed my hands every day, all the time.

Coronavirus is not going to come back. It’s not coming back because we’re not doing Lockdown anymore. We have to be careful about the germs.

My tutor Alex took me to lunch at Raglan. I had a burger and chips and my tutor had bacon and eggs.

It’s cool making friends. I did nothing with my days before, I watched television.

I feel happy now.”

Heather Brown / MOTHER

“Lockdown didn’t faze Darling-Mei but it fazed me. We had to find ways to not argue.

Everything has changed for us since she went into Enabling Good Lives. Darling-Mei is 24 but from the time she turned 21 until March last year, she just stayed in her bedroom.

I said to Winz ‘someone has forgotten us, it’s not fair on her.

She can’t be sitting at home doing nothing’.

When we got Enabling Good Lives, she joined the gym with Ngā Mara Ātea, they introduced us to Hip Hop and they go out a lot. She has so many friends now. Darling-Mei has control of her own life, she’s now telling me what she’s going to do.

During Lockdown she went online to Iso (Isolation) Karaoke and they love her. They’ve invited her back for a festival in September.

The funding bought her the iPad which she used all the time during Lockdown and became a Godsend to her.

Darling-Mei had some wasted years. There should have been a lot more help for her. Life has changed now for her; it’s funny what money can do.

Because she loves music and instruments, she wants to learn the piano.

Darling-Mei does her own thing she is very independent and full of life. We’re now considering looking at a flatting situation for her.

Who would have thought that three years ago or even before Lockdown?”

21

JEFF McEWAN

22

Shian McCartan LOWER HUTT

“I

like to keep busy and go out and do lots of things. During Lockdown I couldn’t go out and do my usual activities but I liked being home with the staff all the time. I love the staff.

I go to WelTec three mornings a week. I leave at 8.30 to catch the bus. I also have a job. On Tuesdays and Thursdays I deliver circulars. We get picked up in a van and go to Petone.

I missed going to my computer course at WelTec and am very happy to be back doing that and my job again.

During Lockdown we had a new routine. Each day we had breakfast and then tidied our rooms.

I like keeping my room tidy and having everything in its place. It’s my office.

At 10 o’clock we met with the staff, sang the national anthem together and talked about what we wanted to do for the morning.

I like writing and spent a lot of time in my office writing my diary.

We have a garden in a glasshouse. I like looking after it. I get the parsley and put it with stock and other ingredients and make a soup. I did that in Lockdown a lot.

I do the shopping for our food once a week with my housemate. We couldn’t do that during Lockdown. Only one person could go so Lillian did it.We had to check that she was buying the right things. Sometimes she didn’t but that’s ok.

We helped make the dinners and had food theme weeks where we tried new meals. I liked the mince chop suey and corned beef with cabbage from Pacific Island week. We also had a McRata night named after our street (in place of McDonalds).

On Sundays I get up early and go to church. I like going to church and seeing my church friends. I couldn’t go during Lockdown.

We have a roast on Sundays too. I like getting the vegetables ready. We have roast beef or pork with potatoes, carrots and pumpkin. And we have ice cream on Sunday.

We made crafts for Easter, Anzac Day and Mother’s

Day. We didn’t have much at home and the shops were shut.

We needed something red to make poppies. I gave my red t-shirt. We cut poppies out and put them in the shape of a cross. We hung it on the fence so people visiting the cemetery near our house could take one to pay their respects.

We made Easter baskets for our Easter egg hunt and I made a card for my mum for Mother’s Day. Afternoons were free time. I liked going for walks and bike rides in the neighbourhood. I have my own bike that I saved up to buy. I also did weights in the gym (in our garage). Sometimes we challenge the staff to do weights, but they don’t want to.

I love rugby and am a big Hurricanes and All Blacks fan. I missed the rugby during Lockdown. I watched the super cars and V8 car racing on TV instead. I am so happy the rugby is on again now. Go the Hurricanes!

I like greeting visitors, and being a leader in our house. During Lockdown my flatmate became unwell and had to go away in an ambulance.

We all helped the staff get help. My job was to meet the ambulance people and show them in. The staff said I was very helpful.

I grew a beard in Lockdown and I like it. I am keeping it now because it makes me look older.”

23

ALAN GIBSON

24

Jamie-Leigh, Puke and Manaakiao Timoti RUATAHUNA

“I

t was a last-minute thing to come to Ruatahuna… we’re blessed to have two homes and work that spreads us between two

regions.

Once given the warning that we would be moving to Level 4 we had to make a quick decision as to where our whānau would be best placed. Stay in the suburbs, enclosed spaces, with the local parks closed? Or head to the hills, the safety of our lands and the safety of our people, with wide open spaces and freedom?

It was a bit of a no-brainer really, but my irrational anxiety was the conflict behind leaving the decision so late.

I was anxious, worried about what the next four weeks were going to look like, feel like, be like with having to balance work, school and keeping everyone happy, it was just uneasy.

We frantically packed to the hilt and hit the road, arriving in the valley at 11:45pm.

Once we arrived home it was a relief although the first two weeks were a bit hard as we re-adjusted to our space reorganising half the house to make it functional (for 24/7 living), so we could have a quiet working space to attend the many Zuis (Zoom Hui). Eventually we found our rhythm and pressed together, and I think Lockdown made us more resilient.

Puke had just started a new project so he was given clearance to be out in the field for those initial weeks as an essential worker, I was balancing my working hours but making sure Manaakiao was settled, feeling guilty because the kids were having to do a lot of looking after themselves and him (Manaakiao), feeling guilty that I wasn’t engaging with much of their school work.

We had to find respite things for Manaakiao to do.

He loves animals and has a high social appetite.

During Lockdown he would go outside and have the neighbour’s dog, our dog, the neighbour’s chickens, the horses all rallying around him.

Before we ever knew about his William’s Syndrome, he had this innate nature and we’d have wild horses coming out of the bush, one time he had wild horses come up to him and they began sniffing him. Being from the city, and with no horse experience I thought he was going to get kicked.

Puke is a horseman and says the horses know Manaakiao is different. They don’t see him as a threat.

I feel safe here, I know that we are in a community that is very loving and cares about each other. I’m

quite a social person, so I was quite eager to see people I hadn’t seen in a long time since we’ve been spending the majority of our time in the Waikato. But I knew coming here we would be looked after by the environment and by the community itself. I do feel close to the land here.”

Ka mate kāinga tahi, ka ora kāinga rua A first home dies, a second home lives (The whakataukī speaks of resilience and improvisation, on the one hand. It is commonly applied to any situation in which a ‘plan B’ is required, or when one system gives way to another.)

Puke Timoti

/FATHER “Returning home didn’t just protect us from Covid-19, but returning to nature gave us a space to reconnect – with each other and with our natural environment. The rush was removed from life, we were able to get back to basics. Collecting local kai, tramping in our backyard bush, cooking together, riding our horses, listening out and roaring for deer from the roadside… the absence of travellers caused the wildlife to come right out to the road.

This time was a reminder to us of what is important, whānau, relationships and connection.

Lockdown may have been stressful with many unknowns, but we became closer as a family. In Lockdown I was able to pass down so much to my children, stories of their heritage and their connection to the land. That was something important to me.”

E hoki ki te kāinga o te whakaiti Go back to the home of humility

25

SHANNON BEYNON

26

Sophie Lynch PEGASUS / CANTERBURY

“I

’m doing a diploma in business at Ara Institute of Canterbury. I started doing four courses this year.

I did a certificate in business at Ara last year. I like numbers, I like logic. I’m good at spreadsheets.

It was a pretty major achievement for me because I was doing NCEA Level 3 as well.

It had been going alright but things went a bit topsyturvy after Covid 19.

I need to go into Ara, not just for the social stuff, but for the theory classes. I need to be doing them in class.

Online doesn’t quite work the same. I struggle with communication as it is.

When Lockdown started, there was no communication with my tutors outside of Zoom calls and emails. Then Ara withdrew me from two of the courses. It took a long time to get hold of someone to explain what the situation was.

I just got this letter which said we’re withdrawing you.

I passed the two courses – Applied Accounting and Introduction to Accounting and Taxation.

I had to go back to do an exam (recently). I’d forgotten how to talk to people, I was out of practice. Throughout Lockdown the only people I talked to were my parents and the people from Explore.

Lockdown was a lot of anxiety. I didn’t cope, I did internally panic, I just tried to ignore it so it would go away. I went into hibernation, sleeping. I kind of just panicked really. I didn’t know what to do. All the time (usually) I can just ignore my problems and they go away.

I wasn’t too worried about Covid-19, we seemed to have it under control compared to the rest of the world anyway. We were doing as well as we could be.

I couldn’t go to Ara or go to the (hydrotherapy) pool anymore; I wasn’t really getting any exercise, so Mum came up with the idea of a tricycle. We’d thought about getting a tricycle before. My body doesn’t cross my centre line so I can’t ride a normal bike, and that’s why we thought of a trike. It worked. I knew I would be better off with three wheels.

A tricycle has so many different benefits - exercise,

socialisation, freedom, independence.If someone manages to get Lego on individualised funding, why not a tricycle?

There was one left up in Auckland for $995 and we got that one.

It’s awesome that bike. I can go to the pub to have a hot chocolate, or the café. It’s an outing. My two favourite things in life are eating and Maisie my dog.I can put the dog in the basket and take her to the dog park. I can bike four kilometres and I’m safe.

The novelty of being able to ride a bike, I’ve never been able to do that before. I hopped on it and I could do it straight away.

I’ll probably start swimming again as well at some point.

I like puzzles and solving things. Any kind of office job I can do. I have a lot of analytical skills.

As part of my next thing I want to go to SeniorNet and help with computers. It seems like something I can do. I find it easier working with people who are slightly older than me. I have a lot of skills which I feel comfortable passing on.

I’ve helped a lot of people in my class. That’s why I’m interested in helping at SeniorNet, if people are willing to learn, I’m quite happy to do that when I know what I’m talking about.”

27

JEFF McEWAN

28

Debbie Smith UPPER HUTT

“I

like walking a lot. I walk in Totara Park and I go down to the local shops and I like talking to people when I’m out. Everyone knows me around here!

The staff would call me on my smart watch to check I was okay and to remind me to come home.

I usually go out on walks two times a day.I got out when the weather was nice during Lockdown but it was hard not talking to people.

I could talk to the owners at the local shop if I kept my distance. I did find it eerily quiet on the streets and awkward keeping a distance from people and not being able to stop and talk to them.

I missed that during Lockdown, it was terrible. I didn’t like that, it felt weird out there. It was like a ghost town.

We were all home all the time because people could not go out and do their usual activities.

Sometimes we drove each other mad! That’s because we are all unique and we have got different ideas. Mine are the best.

When it was too much, I went out on long walks. I don’t like people telling me what to do. I had to get away. My housemates joke that I am an escapee!

I really love music, 60s music. I spent lots of time in my room listening to music during Lockdown. I like Rod Stewart, The Beatles and Cat Stevens.

I also spent time on my computer in my room. I have friend groups that I am in and I enjoyed keeping in touch with my friends on those chats during Lockdown.

I also have my beautiful pedigree cat Pompom who I share with my flatmates.

I usually go to the shops in Lower Hutt once a week.I like to go to the second hand shops. My mum taught me to be a bargain hunter. But I like spending my money.

You can’t take it with you can you?

I came to Totara Park to live here when my family sold my place. A friend was going to come and live with me and I wouldn’t have had to go anywhere but she died.

My nieces and nephews come and visit me sometimes and I love that. Also my sisters visit and send lots of care packages.

I enjoy it here. I am fed and watered. What else do you want?

I like takeaways and I did miss having them during in Lockdown.

Lockdown was a frustrating and challenging time but that’s life, we coped. We’re alive.

We’re lucky here in New Zealand. I am thankful that New Zealand took the steps it did to stop Covid-19 spreading in the community.

When Lockdown finished I was so glad I could go out and talk to people again. I am looking to join the local cossie club so that I can go there and do activities and meet people.”

29

ALAN GIBSON

30

Moana Rewi

NGĀTI KAHUNGUNU / GISBORNE

“I

was looking forward to my birthday on March 28. I was going to turn 31 and had planned a big whānau dinner. Then the Lockdown

came.

It was sad to have to stay at home for my birthday, but it was okay. My support person Sue came over, we had dinner and cake. And my flatmate, Alan, gave me a CD . . . I loved that! I love everything to do with singing and dancing.

Sue was in our bubble, but we couldn’t go out anywhere. No activities or socialising at Blind Low Vision. No horse-riding. No kapa haka. Nowhere.

I did miss seeing Sue and our other support workers every day, but she did still pop around to check in and to go with me on a walk in the beautiful sunshine.

We also got our groceries delivered, which we loved!

We spent a lot of time preparing meals, cleaning the house, keeping everything right.

It was hard not being able to get out and about, but the virus was scary, and I knew we had to do the right thing. So, we stayed at home, stayed in our bubble.

I loved spending a lot of time in my bedroom watching movies, listening to music and drawing my favourite pop stars. I like to draw Prince – his songs Purple Rain and Cream are my favourite. And George Michael. I like him with the guitar on that song Faith.

In my room I have pictures of all my favourite singing stars and other special things, like my new minky blanket that is a beautiful bright red. My two flatmates are my friends but the sign on my bedroom door is important . . . it says, ‘knock before entering’. It is my special space.

I was brought up by my nan in Wairoa and came to Gisborne after Nan died. I lived in a few places until

2019 when I moved into this lovely house – my firsttime flatting!

I like being in this flat. It means I have my freedom.

I love having my independence and doing so many things for myself during Lockdown has made me feel I am even stronger than I was before.

I was lucky to have my new cell phone . . . I just love it! The support workers can use it to check in. I can text my aunty. And I like to use it to listen to music.

I also had my culture which makes me as strong as my great-grandmother used to be, and as strong as she always told me I was.

That helped me build up even more independence and I feel proud of what we achieved. We looked after each other and after our flat. It was a big responsibility, but we did it!

I think I am even stronger now than I was before. I know my nan will be looking down on me saying ‘well done my darling, well done’.”

31

JEFF McEWAN

32

Elisabeth Carr UPPER HUTT

“O

ne of the biggest things in my life is my doll collection that I keep in my room.

I have over 300 dolls from 52 nations. I started collecting them when I was 12 because Mum and my step-dad went overseas and brought me a doll back.

I already had some dolls. I had won a doll dressed in a wedding gown at a Crippled Children’s event. It was so exciting when I won that doll. And I had Suzy.

Suzy is the most important doll and is very precious to me. She was in the car with me when I had my accident. She came to the hospital with me and came back home. Suzy is my child really.

My dolls are from all over the world and in traditional costumes. Mum bought me a doll whenever they went overseas. They’re in a glass cabinet in my room. I also have some China dolls people have given me as presents and I love them.

I came here five years ago. I used to live with my husband Graham but I came here when he got sick.

Mum and my sister Lynn live nearby and we’re all very close. I could not see them during Lockdown and that was hard. I rang Mum every day and kept in contact with my sisters.

My other sister Bev lives in Hamilton and visits me too. She gives me a hard time and we joke around. You know how it is with family, you can do that.

I turned 60 during Lockdown and we couldn’t have a big party but we celebrated at home. My niece made a beautiful pink and white cake. I loved it.

I like keeping busy and keeping my mind active.

Monday is cleaning day. I clean my room, do the dishes and go to PACT cultural group.

On Tuesdays I go to Laura Ferguson (recreational programme) in Lower Hutt and do baking and crafts.

I missed that. It was quite hard because I am either doing my art or my cooking.

On Wednesday mornings I do exercises at the pool with weights on my arms and legs to help my strength.

I’ve got new weights for my feet for this.

I visit Mum too and she visits me once a week.

On Thursdays and Fridays I have free time for sewing and I enjoy doing art. I draw scenery and landscapes and give away a lot of my pictures.

During Lockdown I started sewing again. I had learnt sewing at intermediate and college, but I hadn’t done it much since. The staff found some material and set me up and we made tunics.

We made the first ones from old hospital gowns because we couldn’t get fabric! Then we got some colourful fabric and made nice bright ones.

The staff like wearing them and put their phones in the front pocket. I’ve got the sewing machine in my room now and I enjoy doing it.

I found Lockdown a bit upsetting because I couldn’t go anywhere. I felt frustrated because I couldn’t go out the door.

I missed going out on trips. I like the arts, going to movies, ballet and opera shows.

The only time I left the house was to use my walking frame on the front path for exercise.

I was so glad to see Mum after Lockdown. I’m so lucky I have her. She is very good to me and supports me a lot, and so does my sister Lynn.

I have a good life. I am happy with my life.”

33

ALAN GIBSON

34

Patsy Matete TE ARAWA / GISBORNE

“I

enjoyed myself in Covid-19 going for a walk.

My doctor told me to walk. It’s good. I do more walking now. My staff have noticed that I have lost weight. I want to set a goal. I can still do it.

I have walked up Kaiti Hill 25 times. I’m a bit slower up that. I get tired but I make it all the way up the third hill. I drink water. You have to be careful with the heat.

The Lockdown was a bit boring at home sometimes.

The hardest thing was not being able to go up town.

That was the hardest. The pool stopped. Harry couldn’t go and see his mother. We have been married 19 years.

I went to the Botanical Gardens. I liked walking under the trees.

I couldn’t go to my job. I’ve got a job at the Salvation Army shop. I do the shelves, wiping the shelves, keeping them clean and keeping the spray away from the children.

I do kapa haka and craft. I couldn’t do it during the Covid. I couldn’t go for groceries. I do numeracy and literacy. I did it with the tutor on the phone.

I did some cooking. I would have cornflakes for breakfast and a muesli bar.

I got meals delivered. Some of them were healthy.

They were too healthy! I like doing it by myself now. No

fish and chips. Whoever does the dinner doesn’t have to do the dishes.

I like gardening. I did artwork.

We had to wear a mask and protect ourselves. The staff needed to wear a mask. The staff needed to stay this far apart. It’s the ones that are crying on the TV that I feel sorry for.

The virus is finished. It was good to see our friends again."

35

ALAN GIBSON

36

Jan Potter-Black GISBORNE

“I

like to keep my unit nice – the kitchen clean, the carpet vacuumed, the lawns done and the pots and garden nice and tidy.

During Lockdown I did it all by myself, I did everything, it pushed me into going that little bit further and achieving a little bit more every day.

When it was over, I thought ‘that’s it, I’ve done it, and that’s good’. I feel immensely, spectacularly proud of how far I have come.

The hardest thing about having a stroke is that one day you could do everything you needed, and the next day you just couldn’t. Pffttt . . . gone.

In the early days after my stroke I was mainly in bed or a wheelchair. Back then I lived in residential care in Hawke’s Bay, where I had raised my children. But in 2014 I moved back to my hometown of Gisborne to be closer to my siblings.

After I arrived I started off in residential care but I got my own mobility scooter. Freedom!

But even then I always planned to get stronger and was determined to get even more independent.

And that’s what I did. In 2018 I moved into my own place and it was very peaceful and private, which I loved.

I was still getting help with personal and home care hours then, just before Lockdown, two things happened.

The first thing was that I finally got a wet area shower that made it much easier for me to take care of myself.

It was wonderful!

The second thing was that the motor blew up on my scooter, which I needed to do everything from pottering in the garden to taking myself to the supermarket. That was devastating!

When I saw the Lockdown announcement on the

television, I knew I would manage. Without my scooter I was already in a Lockdown of my own – I was going crazy without it.

During Lockdown my support team checked in on me regularly and made sure I got to go grocery shopping.

That was pretty much my only freedom, but I wasn’t worried about losing the rest of my support hours. I wanted to do things for myself and I really felt like I could.

The whole thing did make me weary but during Lockdown I kept really busy. I love being creative and things like growing plants and doing my artwork gives me a lot of pleasure and a big sense of achievement.

When Lockdown came to an end I phoned Life Unlimited to say I’d found there was lots more I could do for myself, though I still get a couple of hours of home care a week so I don’t get too fatigued.

Working hard to build on my independence means I didn’t just survive Lockdown . . . I absolutely thrived.”

37

ALAN GIBSON

38

Pip Parkes and Shannon Thompson GISBORNE

“H

ow long have we been together? I don’t know. I lose track, I think three years. I fell in love with him and he’s nice to me.

He’s my partner. I like that he’s got tattoos. We first met on an online dating site. I said to him ‘would he like to come to Gisborne?’ and...he’s here!

I found the Lockdown boring because there was nothing active to do. I was going to yoga and doing horticulture. I felt miserable because I couldn’t play the keyboard. But it was good here with Shannon. We could play games and it kept him busy. He doesn’t like talking too much. We played games like Fortnight and Grand Theft Auto V. I could not see my family which was quite hard. I wanted to see my sister-in-law. It was hard not seeing Sophie.

Our cat is called Ruby. We had to make sure she had food and she was clean, make sure she was healthy. I looked after Ruby. Look at you Ruby! Are you going to sit and listen? She has been very friendly lately.

We ate good food over Lockdown, we stopped getting takeaways. I learned how to cook. Bacon and egg pie, and pasta bake. Pasta bake is one of Shannon’s favourites.

We saved money and now we have spent it on bikes, on a gym membership. I like doing the treadmill. I got a jacket, a winter coat. Shannon got a BMX. He bought some more tattoos.

During the Lockdown we had only one support worker

and that was Naomi. She helped me with the shopping.

It was quite hard doing the cooking and the cleaning. I managed.

I had to clean the bathroom, the toilet, and the kitchen.

We were just at home. I wanted the programmes to come back on and go back to the gym. I wanted to catch up with friends. But it was frightening. I get asthma. I was worried that I might catch it.

I got the flu vaccine. I was happy to see everyone back. There is a disco coming up. We need superhero costumes.

Shannon has a job doing firewood. I have a job now too! I went to have a hot chocolate at McDonalds with my friends today.”

39

ALAN GIBSON

40

Tiffiney Perry and Jack Harvey HAMILTON

“L

ockdown was revitalising in a lot of ways.

We slept in and we did a lot of exercise because the weather was good. We listened to Jacinda, we stayed home; we saved lives.

We saw a few neighbours and met up for a drink over the fence but everyone pretty much did their own thing. For us who are busy people it was actually quite refreshing.

The only time Covid-19 really slapped me in the face was when we did go out for necessities and we saw all the plastic all over the doctors and the chemists.

Our neighbours were kindly doing our shopping for us as supermarkets were a no-go zone for us. We didn’t want to be compromised any more than we are with our disabilities.

Luckily we have a few toys to keep us and Jack busy energy-wise.This was a big focus - trying to keep Jack busy as otherwise he can drive you nuts. Because we watched the news with Jacinda most days he was aware of what was going on. There were a lot of questions.

Jack would wake up most days and say the same thing: ‘Is it still here Mum’? meaning Covid.

And then it was all about making a plan for the day. Jack works well with a routine and so having no school gave us a big chunk of the day to fill in. At first it was nice enjoying some free time but then it got a little monotonous. You just had to wake up, go for a bike ride, shoot some hoops, play some tennis, go for another ride ... best to tire Jack out early and then the Xbox would get a thrashing.

It’s (usually) quite hard to get Jack to watch the news on a general school night. He’d rather do other things, but it was one time in his life that he was like, ‘what’s that thing, how many today Mum?’ and stuff like that.

Jack mowed the lawns and washed the cars a lot.

We see him doing a job like that one day. Setting up a car wash or mowing other people’s lawns. He would still need assistance as he does with most tasks.

Obviously, I’m surrounded by disability. But helping others is inbred in me from my mum and dad who always gave back. Philanthropy became a big part of the Perry way, and still is. Mum would often invite the ill and misfortunate into her life.

She wanted to save them.

Disabled sports are a great way to break barriers between able-bodied people and ourselves and perceptions people have. They just think ‘be happy with what you have got and just sit there in the room and go stay in the corner and behave yourself in your wheelchair’, which is not us.

Jack is not unhealthy; he just has issues with how to process normal everyday life. It’s his cognitive skills that give him the most trouble. Other than that he is fit and strong as an ox and a big help to our family unit. If he was your normal teen, he would be out and about and not around much to help but luckily, we all have a lot of fun and do a lot of stuff together. Lockdown brought us all a bit closer, I think.

He needs a little bit of advice on what to wear and when to have a shower, when to go to bed, a little bit of direction. He’s on medication but other than that you normally can’t shut him up.”

41

ARTWORK BY TIMOTHY CHADWICK

42

Hearth Trust Home LOWER HUTT

T

imothy, Andrew and Corey live at their Hearth Trust home set in Lower Hutt’s western hills where they are supported by staff and volunteers. This has been their home for the last few years.

In 2015 Tim’s family founded the Trust and bought the home where he lives with two others and support workers. The extended home and two hectare property is off a rustic rural road surrounded by rolling hills of trees and green space.

At weekends the men go home to visit or stay with their parents nearby in the Hutt Valley.

During Lockdown Andrew lived with his parents for the first three weeks, while Timothy and Corey stayed at the house full time as part of a wider bubble of 15 people including staff and volunteers. The bubble grew to 16 with Andrew’s return.

Life was different. The men could no longer go to Thumbs Up, the day programme they usually attend a few days a week. However, they enjoyed joining a variety of Zoom sessions provided by Thumbs Up, and so were able to keep in touch with their friends.

The men enjoyed a slower pace of life. They slept in until 9am, enjoying not having the usual morning rush of most days where they must be ready to go to their activities by 8.30am. In the sprawling property they found plenty of things to do to pass the time and try new things.

They each had a new daily timetable headlined with Fun, Helpful and Healthy Activities and chose what they wanted to do.

It meant more one-on-one time with support workers, more walks in the native bush on the property, riding bikes or scooting by the Hutt River, numerous Zoom meetings with family and friends, tending to the many and ongoing tasks a rural property presents, gardening, helping with dinner more often and baking.

It was Storytime on Tuesday nights, watching Mr Bean on Wednesdays, Music night on Thursdays and Dance Night on Fridays. There were also spontaneous dance sessions in the back yard with full on raving action!

Once it was safe to mingle in the wider bubble they even had an Alice in Wonderland dress up party, where Timothy was a fabulous Mad Hatter and Corey a wonderful White Rabbit.

Feeding everyone was a mission. Andrew usually helps with a weekly shop but couldn’t during Lockdown.

One person did a fortnightly five to six-hour shop for the entire bubble. Flour wasn’t always plentiful for the baking but they never ran out of toilet paper.

They all missed their families too. Lockdown was the first time the men have lived away from their parents for an extended period of time.

“It was an opportunity to strengthen their sense of belonging here. It was a nice Hearth Trust family feeling for them,” says support worker Hadleigh.

Support workers say the men seemed to enjoy a more relaxed pace of life, taking leadership in decision making about their day, were warm and engaging with others and content to go with the flow and try new experiences during the Lockdown and in the weeks following it.

43

JEFF McEWAN

44

Corey Wilkie LOWER HUTT

C

orey relished his time in Lockdown spending more time on the land, helping out wherever he could and getting involved in a whole range of activities with those in his bubble.

He hosted movie nights in his room where everyone relaxed around his TV, made huge pancake stacks for Sunday morning breakfast and turned his hand to woodwork and all the outside jobs that presented on the rural property.

Corey is close with his family and missed his parents a lot. He has two brothers and is an uncle to Quinn,16, and one-year-old Mikaela. He missed the family dog too. He loved regular WhatsApp calls with family.

Although activities were cancelled at the learning and recreational centre he attends during the week, Thumbs Up, he was able to join its regular Zoom calls, and he soon found many other activities to keep him busy at Hearth Trust.

Corey’s an outdoors man, he loves helping out and during Lockdown he made the most of the warm and sunny autumn weather to be outside.

At weekends he helps his dad with maintenance tasks around Wainuiomata schools. He’ll do water-blasting, leaf blowing, hammering and go to the hardware store for supplies.

There are always maintenance jobs to be done on the Trust lifestyle property. Corey cheerfully adopts the role of project manager using his clipboard and announcing the work over his megaphone when there are tasks to be done.

During Lockdown he spent his mornings outside moving mulch, building composts, gardening or landscaping for a new garden area. He also went for regular walks through the native bush track on the property, and around streets in the local area or to Boulder Hill with his housemate Tim. Both outdoor lovers, the pair developed a closer relationship during Lockdown finding more things in common. Corey was always on the go and often sought out Tim to involve him in activities, and with the additional sleeping in occurring in the house Corey could be heard

calling out to Tim to get up in the mornings.

Scooting along the Hutt River with his housemates riding their bikes alongside him was another fun outdoor activity for Corey, and a new activity for the group that was prompted by the Lockdown.

Another happy place was in the property’s large workshop. Corey loved working and tinkering on the workbench in front of its neatly tooled wall. He repaired a clothes rack and sanded the planks being prepared to make a bed in a Kombi van on the site.

One of the things Corey appreciated most with Lockdown was having a slower life. Corey agrees that he can get anxious when there are too many changes happening in his life, and that he loved being at home more, having quieter time and not being overstimulated.

For quiet time during Lockdown he went off to his room to listen to his music collection and watch live concerts.

He’s a fan of Queen, ABBA, Bob Marley, Westlife and the Eagles.

Corey’s a Hurricanes and All Blacks fan. Saturday nights are often spent at the local Wainuiomata pub helping his parents run raffles. He couldn’t do that in Lockdown but he was glad to see the rugby season resume and the Hurricanes get a few good wins under their belt when the country moved down to Level 1.

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JEFF McEWAN

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Andrew Reynolds LOWER HUTT

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ndy spends Monday to Friday at Hearth Trust and goes home to live with his parents at weekends in Trentham.

When Level 4 was announced support workers and Andy’s family discussed the best option for his support, and due to respiratory health issues he had in 2019, decided that being home with his parents and sister would be the safest option for his health.

He spent just over three weeks of Level 4 at home.

Mum Jackie says a big part of his day was WhatsApp and Zoom calls to keep connected with his friends at The Hearth Trust house and at Thumbs Up learning and recreational centre, which he usually attends three days a week.

“He coped very well. He just loved Zoom calls with Thumbs Up. These were a couple of times a day andthey tried to keep as close to the programme as they could.”

He also enjoyed daily Zooms on his iPad with his friends and support workers from Hearth Trust home. “It was exciting for him when he saw them on the screen.

He would see Corey, Tim and Hadleigh and we would get a great reaction from him - lots of calling out.”

He also enjoyed listening to music and was always busy. “He did not like going outside much while he was here. Whether he had picked up on anything being different we don’t know. He just liked to keep to the house.”

Transitioning from home back to the Hearth Trust house was not a problem.“He really does love it there. He was thrilled to be up there again. He runs off and gives us a flick of his wrist to say goodbye. He has got a life there and a life here.”

Hadleigh says they were pleased to welcome Andy back to the house as his housemates missed him.

Without his usual activities a new timetabling system was created and Andy had a lot more one-on-one time with his support workers than usual.

“Andy thrives on variety and activity. Every day we sat down and he decided what he wanted to do and he would write down the things he was planning to do for the day.”

Andy loves being in the kitchen and making smoothies for his housemates and this became a regular ritual during Lockdown. He’s also a baker – usually responsible for baking muffins for his housemates’ lunch boxes on Tuesdays – and enjoyed more time for baking during Lockdown.

Another change to his routine was that he couldn’t do the weekly grocery shop which he usually does on Tuesdays with a support worker.

He likes being inside and doesn’t go outside a lot, Hadleigh says, but during Lockdown he loved riding his tricycle, sometimes donning his dragon onesie for his ride, and ventured out into the garden.

“It was an amazing thing for Andy to be going outside so much. He even tried his hand at gardening.”

Andy likes writing and did this on his whiteboard and on hand-drawn cards. “He is also very social and has a number of friends and liked calling them on Skype during Lockdown.”

He loves doing yoga and is very flexible. During Lockdown Andy would do yoga from YouTube with Hadleigh, use his Swiss ball and even do some advanced acro yoga.

“He loves dancing too so sometimes we would start yoga and he would add on some dancing all around the lounge too!” says Hadleigh.

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JEFF McEWAN

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Timothy Chadwick LOWER HUTT

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ockdown was the longest time Timothy has had away from his parents.

He stays at the Hearth Trust home full time, but his parents often visit and he goes home regularly in the weekends.

Timothy loves spending a lot of time outside and being in big open spaces. He was able to do this during Lockdown, particularly due to a long fine spell of weather. There are always many outside jobs to be done like gardening, feeding the sheep and landscaping.

During Lockdown he took walks in the native bush track with housemate Corey, spent time weeding the gardens, building a compost and creating a new garden bed. Timothy is often found behind the wheelbarrow moving mulch and other loads.

A difference for Timothy was that he couldn’t spend time with his dad working on the property. Dad Noel often comes over to tend to outside jobs at the property.

The pair also usually go on long bike rides in the weekends.

Timothy and housemate Corey developed a closer bond during the time, enjoying many shared activities together.

There’s a large workshop on the property and during Lockdown that’s where Timothy enjoyed doing pastel art. With a support worker to steady his hand, he would spread a range of colours over large pieces of paper to make beautiful designs, and he was prolific.

He now has a collection of dozens of pieces of colourful art. “We were lucky we had a good supply of pastels before Lockdown,” says support worker Jen. Timothy Zoomed with his family a lot to keep contact and also with housemate Andy who had gone home to his parents for the first three weeks of Lockdown.

Timothy’s sister Skye was part of the Hearth Trust bubble during Lockdown, and retaught him to knit again, a skill he had learned as a child. Knitting became quite a focus in the house with support workers and volunteers knitting several woolly slippers by the end of Level 4.

Live music is part of life at the home. There’s a piano, guitars and other instruments people play in the lounge and being part of the action is a favourite activity for Timothy.

Timothy loves listening to his music too and knows the lyrics to many songs by heart. He loves Simon and Garfunkel, Enya, ABBA and John Denver among many others in his CD collection. During Lockdown he listened to his music while having ‘sleep ins’.

He also enjoys playing games and doing puzzles and spent time doing these during Lockdown. Jenga was his favourite.

Timothy took part in the new evening activities of the house - Story time, Mr Bean night and Dance night. And he shone as the Mad Hatter when dressed up for the Alice in Wonderland party that the large Hearth Trust community organised.

As the founding housemate Timothy was the first to come to live at the Trust home. He has a special chair in the corner of the lounge by the bay window. When he’s not keeping active outside he likes to sit at the chair and enjoy the view of the open green space and finds pleasure in seeing all that is happening around his home.This was something Timothy could continue doing during Lockdown.

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CONTRIBUTORS Mary Anne Gill is communications manager at Enrich Life, a shared services agency providing back-office support to charitable trusts, including Life Unlimited. She has worked in the newspaper and publishing industry for more than 40 years, has owned her own community newspaper and printing company and been an award-winning journalist including a two-time winner of a Qantas Media Award and runner up in the newspaper journalist of the year. Career highlights include assisting on crisis communications after the Christchurch earthquake, Havelock North water contamination and Waikato Hospital Conficker shutdown.

This is the second book she has edited. The first was The Village on the Hill: Celebrating 125 years of Waikato Hospital. She also edits the Altogether Autism Journal.

Jeff McEwan was a press photographer at the Evening Post and Dominion Post. He later established Capture Studios in Wellington in 2008, a photography and design company.

Born in the Hawke’s Bay, Jeff realised at a young age he was in love with taking photos. He completed a Bachelor of Design degree, majoring in photography at Victoria University. Jeff keeps busy coaching junior football, riding the local Wellington mountain bike trails and being a dad to two primary school aged kids.

Alan Gibson has for more than 20 years drawn on his passion and talent for visual storytelling, capturing national and international events for the New Zealand Herald. Between stints at The New Zealand Herald he worked in the UK for two years contracting for an agency that supplied all the major newspapers of Fleet Street. He won the New Zealand Press Photographer of the Year title six times (Junior and Senior) and recently struck out on his own as a freelance content creator in photography and videography hoping to continue telling the stories of this great country.

Hayley Redpath was a print journalist with The Nelson Mail and The Evening Post before moving into health communications for Tairawhiti District Health Board and Māori health provider Turanga Health. After finding herself living in remote Matawai on the edge of the Waioeka Gorge Hayley created Redpath Communications specialising in media and public relations for the health and civil infrastructure industries. When she’s not writing Hayley is mum to three boys, a farm gate-opener, swimmer, and lover of New Zealand fiction.

Gisborne-based Kristine Walsh worked for more than 20 years in a print newsroom covering rounds from health and politics to community issues and the arts until, in 2016, she cut herself loose to double down on her dual passions of writing and vintage paraphernalia. Towards mid-2020 she applied the most dreadful of phrases to achieve the most wonderful thing . . . executing a “post-Covid pivot” to focus primarily on freelance writing. “People are endlessly fascinating,” she says, “and there are so many stories to tell.”

Juliet Young is a former radio and print journalist of 12 years before moving into media management in politics and the public sector where she’s held a number of communications roles. These days Juliet supports a range of organisations with her skills on projects including writing, media and public relations management. Juliet loves telling people’s stories and helping others to share their experiences. She can be found Ubering her two girls around Wellington, doing a yoga session or following the netball when not at her desk.

Shannon Beynon has been crafting words and images for more than two decades in broadcast and print media and, more recently, as a communications consultant. She lives in North Canterbury with her incredible children, brilliant mother and two lazy dogs.