Lucky to have each other

Cerebral Palsy Society member Ella Grant and her support person Donna Clark have an unmistakable bond that spans more than 20 years. Here, with the help of her mum Lorraine, Ella shares her story of doing life with Donna. And we hear from Lorraine and Donna as well.  

Donna Clark with CP Society member Ella Grant.

Tena koutou katoa.
Ko Horouta me Aotea oku waka, 
Ko Hikurangi me Murimotu oku maunga, 
Ko Waiapu me Mangawero oku awa, 
Ko Ngati Porou me Te Atihaunui a Paparangi oku iwi, 
Ko Ayeesha taku teina, 
Ko Victor Grant raua ko Lorraine Wiersma oku matua 
Ko Ella Grant toku ingoa 
No reira, tena koutou, tena koutou, tena koutou katoa. 

He aha te mea nui o te ao? 
What is the most important thing in the world? 
He tangata, he tangata, he tangata 
It is people, it is people, it is people 

My name is Ella, I’m 24 and I live at home with my parents and little sister in Otautahi, Christchurch.  
I’ve always had support people in my life, I have Cerebral Palsy Spastic Quadriplegia.  
I need help with everything I do. Getting up in the morning, getting dressed, eating, etc. All those everyday things everyone has to do.  

That’s personal stuff and it’s challenging sometimes having someone assist you with these things, but even more challenging is having someone speak for you.  
I don’t communicate verbally and I can’t use a machine or technology to communicate either.  
What I do have is whanau and support workers that have known me all my life, that have been with me as I grow and change, that see ME!  

One of those people is writing this for me, my Mum, Lorraine.  Another who I’m going to talk about is Donna (aka Donz), she’s been my teacher aide and now my support worker for 20 years. 

I met Donna when I was about a year old. We’re kind of whanau through her sister, who’s married to Dads Uncle so she was part of the whanau welcome party when Mum and Dad brought me home from Australia, where I was born.  

Having strangers come into our home and support me has always been a big challenge for Mum and Dad so once we find people that fit with us (our values, our tikanga) we don’t let them go.  
We support them as much as they support us, we give and take and everyone is in agreement that I’m the centre of the universe!  

Donna started supporting the whanau when I was about 4 years old by coming into the hospital so Mum and Dad could have a break, or helping out around the house. 
Gradually she started learning to do more things for me like using the machines that help keep my airway clear and provide nutrition, giving me medication, doing my stretches with me.  
She started to recognize when I was having seizures and could tell when I was getting sick.   

By the time Mum and Dad started thinking about getting me off to school she knew me just about as well as they did, with the added bonus of knowing what their dreams and aspirations were for me, what was acceptable and what was not in the way people talked to me and how they treated me.   

I am Maori and I have Cerebral Palsy, I am not Cerebral Palsy or the Cerebral Palsy girl.  

Donz has had so many roles in my life throughout our journey together; always a friend, always role modelling to my peers how to interact with me in a gentle but firm way.  
I really appreciated that from the beginning of our schooling because as we moved through to intermediate and high school, my friends that Donna role modeled to in primary school then started role modelling to all the new people we came into contact with.  
She was always the cool but responsible adult, we were always in the coolest groups of kids and she let me be the age I was.   

Like, my friends hid their smokes in the bag on the back of my wheelchair lol and she didn’t growl or tell on us.  
In high school particularly, she became a bit of an older sister type figure to my friends. That meant I was in amongst some pretty intense discussions in our breaks. Me and Donz still love a bit of gossip.  

As we started moving through the education system it got more and more challenging.  
Mum was the bulldozer smashing the big rocks into smaller pieces and Donna would be the one raking the ground every day settling everyone down and making sure that I had the same opportunities as my peers, problem solving to ensure I could be included.  

One of her many super powers was her ability to connect with people and find allies who would stand with us to ensure I had equity within the school system.  
Like the cherry picker incident… when it came time for the graduation ceremony at the end of the year Donna and my friends realized that the certificates were being presented to us up on the stage, that had no ramp.  
It was suggested that someone could come down and shake my hand and pass it over but “my peeps” as they liked to be known, wouldn’t have it.  
The school had to hire a cherry picker and Donna and I rose up through the air in front of all those people and Donna pushed my chair over so WE could get our graduation certificate.  

Going through all those schools, doing the things we did, demanding the things we had every entitlement to, took courage.  She gives me strength and I give her strength.

I wish every child who has extra needs could have a Donna walking beside them. 

I started transitioning from high school with Enabling Good Lives when I was 18 so although I didn’t know what I wanted to do I knew that I would have access to funding which would give me choices.  And I would need a community support person to help with that.  
I’m sure my high school would have jumped at the chance to hire Donna but she’d had enough of school by then too so after the school formal we finished up and looked at other adventures we could do together.  

In the 5 years since then we have been on many adventures. I have had several jobs she has supported me at, we have spoken at a couple of conferences about disability where both of our experiences have been the subject of our talk (mine go on the overhead projector) and we travel to do training courses regularly, sometimes for her and sometimes for me. 

On a day-to-day basis Donna gets me up out of bed in the morning, helps me shower and get ready for the day. 
I’ve got house stuff to do that Donz helps me with like keeping my room clean, washing, hoovering, that kind of stuff.  
I’m completely tube fed, Donz gives me my nutrition via a PEG every couple of hours so at least we don’t have to do grocery shopping!  
I do a music class, dance/exercise programme or a sensory activity during the week days with lunch or a cuppa afterwards with friends.  
In between that we hang out in our community a bit, folding the village news pamphlets at the community office while catching up on the goss.   
Donna helps me be a contributor and networker, we know lots of people in our little seaside village.  
I also enjoy some quiet time, just her and me kicking back reading out my face book posts, listening to music and doing our nails. 

Donna is a very warm, empathetic person with a wicked sense of humour.  
People are drawn to her when we’re out and about.  
Something that I love a lot about her is that she doesn’t let people tell her how “special” she is because she supports me.  
She tells them that we’re lucky to have each other and I think that’s true. 

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Kia ora, it’s Ella’s Mum Lorraine speaking for myself now.  

I just wanted to add in some korero from a parent’s perspective.  

Having someone that Ella’s Dad and I know personally, that we have trained to a certain extent and that we know is a safe person (culturally, physically, spiritually and socially) to be with Ella, has been the single biggest thing we could have done to ensure Ella has equity as she moves through life.  

For her to be seen, heard and valued we needed to place a person with her when we couldn’t be there, or when it wasn’t appropriate for us to be there.  

We love Donna and like Ella, we wish every whanau could have someone like her walking beside them as they struggle to create a good life for themselves and their child.   

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Kia ora, 

My name is Donna Clark. I live in Christchurch and I have one son Joseph who is 31 years old. 
I have been Ella Grants carer, teacher aide and now support person for going on 21 years now.  

I think I’ve stayed in the job for a number of reasons but the main one is because I love her and her whanau.  
I’m really a member of the family – I’m there 5 days a week, I go through all the ups and downs that they go through.  
I see the house at it’s messiest, I see the members of Ella’s whanau at their best and their worst, you can’t be just a ‘staff member’ in those circumstances. 

What I also love about this job is all the fantastic people I get to meet.  
My work with Ella led me to be a part of a holiday programme for children with special needs, Allstars.  
I was supporting Ella at the programme when she was about 6 or 7 and the couple running it decided to step back in order to spend more time with their children. 
Rather then have it close down a couple of us decided to take it on, so for 9 weeks of the year I take time off to do that. I think the break is good for Ella and I, we really look forward to seeing each other again after. 

When I think back to when I first started working with Ella and her family all I can really remember is how scared I was!
She was so little and needed so much care, I really felt for her Mum and Dad.  
When she was young it was lots of cuddling, medications and therapy.  
Then giving the whananu respite at the hospital.  
Then doing some teacher aide sessions at Conductive Education and Kohanga Reo. 
Then primary school, intermediate school and high school. 
We went from one school to the next with her peers so we were never the only newbies at school, that made it easier.  

One of the greatest gifts working with Ella has given me has been to connect me to my whakapapa.  

I am Kai Tahu but had never really been immersed in my culture before.  
Supporting Ella made me step out of my comfort zone so we could learn together.  

At one of her schools I was called on to reply to the karanga as we made our way onto the atea. It was not something I would ever have put my hand up to do but perhaps it was something Ella would have liked to have done if she could?  
Thinking of it like that helps me step up and out of my comfort zone.  

We performed kapa haka in all the schools Ella went to. We did weaving and taiaha and we were in the bi lingual unit at high school.  
One thing I noticed was that when we were in a Maori environment Ella was totally seen as one of them, Maori.  
Her Cerebral Palsy didn’t play a big part in who she was or how she was seen.  

Seeing Ella grow from a child to a woman has been amazing.  

We know each other so well, if someone says something that Ella knows I won’t like, she gives me this little wide eyed sideways look like, “what are you going to say now Donna?”. 
She has lots of different sounds that I know exactly what she means when I hear them. I suppose it seems strange to most people but that’s just how we roll.  
Ella’s funny, cheeky, tough and she’ll say I’m the gossip but she’s the one!!!  
People will say all sorts of things in front of her, they’re really lucky she can’t talk!  

I think the most treasured moments with Ella are the ones where we have been able to support each other.  
Take the earthquakes here in Christchurch for instance. We were at kura in the playground for the big one. Ella’s two friends who are vision impaired were with us, one holding on to her chair. 
When it hit the whole chair tipped over, her friend’s hands trapped under the handles.  
Ella was so calm, she just lay there waiting to be lifted upright.  
Her friends were all in a panic, not knowing what to do or where to go, they gathered around Ella and seemed to find some calm in her presence. 

Walking beside Ella, sharing parts of her life with her and her whanau has helped me develop in ways I never would have dreamed I would. 
I’ve had to pull my big girls pants up and just dive in sometimes and not worry about what people will think.  

Ella has taught me that nothing is impossible. 

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For more information:
Melanie Louden
Communications Manager
melanie@cpsociety.org.nz
Mobile: 022 087 8191