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Monday, 25 March 2019 07:49 pm

Meet the people who find joy in a YMCA dance, or a clap of hands


POSITIVE EFFECTS: Kathy Lyall says teaching art to adults with special needs has taught her to appreciate the small things in life. IMAGE: Hayley Gastmeier

ALEX ANDERSON was waiting in a bank queue to get money when his client broke out into YMCA, singing and dancing the classic 80s song.

Everyone just turned to look at the man, who was having a great time, and started sniggering and whispering.

“I couldn’t burst out and shout at everyone so I just started dancing too,” Alex recalls.

Alex says most of his clients do not conform to social rules and conventions but he appreciates that is what makes them unique.

Alex has been a community support worker for four years in both Wellington and in the United Kingdom.

His clients are adults 18-years and older, some at retirement age, and his job entails teaching and mentoring, caring and support, communicator, chauffer and cook.

He picks up clients from their homes each day and brings them to the vocational centre where their days consist of a variety of activities like swimming, art, drama and day trips.

Alex had never interacted with disabled people until he accidently got into the line of work and found he enjoyed how interesting and different everyone was.

“It’s amazing the way they see the world and how they’ll accept anybody.

“They don’t have any hate or jealousy, most of them just like you for who you are.”

Although Alex enjoys the job which pushes him outside his comfort zone, many issues arise while he and other carers are out with their clients.

Some venues do not have wheelchair access and some places, like the cinema, are too expensive to visit as both the client and carer must pay admission.

While swimming pools generously allow Alex and his clients free entrance, the bus services charge full price.

Alex says it would be good if buses could do a “free companion thing” so they could use public transport more often, which gets his clients interacting with the community.

“It gives a sense of achievement to our guys to go on the bus and they love it.”

He says most of his clients have learning and physical disabilities so getting them to quickly find a seat and sit down on the bus can be difficult.

Often the bus will speed off, leaving Alex struggling to catch his clients who are tumbling in the isles.

But he says some bus drivers are fantastic, as are many people they meet on the street. Some will open doors and others will engage in conversation with the clients.

Alex says his clients enjoy talking with members of the public, and they happily talk about it when they get home.

“The other day I took one of my guys for a haircut, and he’s quite noticeably loud, and one guy asked if it was my job to care for him.

“I said ‘yes’.

“He said, ‘you’re very good. You do God’s work’.

“They’ve faced challenges in their lives that you can’t even imagine.

“Getting up in the morning for some of them is difficult enough, let alone discrimination from the general public.

“So yes it’s challenging, and sometimes heart breaking.”

Art is often used as creative therapy for individuals, and for the past six years Kathy Lyall has been tutoring art to people with special needs in the Wellington region.

Her interest in working within the sector was sparked while she was an art student attending work experience at a creative space in Wellington.

“I loved what I did, to be able to empower and enrich people’s lives and teach them new skills.

“And it’s not only about us teaching them, it’s what they can teach us.”

Kathy’s clients range from 20 to over 60-years-old and they all have a unique art style.

She enjoys the variety of people she meets and seeing the talents they express.

“If you can put a smile on someone’s face by teaching them a new skill, and they can see the outcome and they’re so thrilled and excited, it makes your day.”

The community support worker says in her line of work both staff and clients deal with an array of challenges.

Communication can be an issue because some of her clients have hearing impairments or do not speak.

Others may have mobility issues, so going on outings always takes logistical planning.

“We have to look at things very objectively and creatively.”

Kathy admits at times the behaviour of her clients can be testing, but as a rule they are affectionate and lovable.

One client calls Kathy “mummy” despite being 10 years older than her.

“They’re very humorous many of them, they’re very loving. They make you smile and they make you laugh.”

Kathy says art can develop independence.

She says in care situations if everything is done for them it takes their independence.

“We give them the opportunity to push their own boundaries.

“And teach them life skills, encouraging them to become more independent, even if it’s just making a cup of tea.”

One of the aims of the vocational centre is to help clients build up community connections by getting them out and integrating them into the community.

Kathy has noticed that many people do not know how to behave around, or address, her clients when they are out and about.

“People are socially becoming more accepting, but we have experienced odd looks, and people trying to talk to our clients through us without asking our clients directly.

“And then we get looks of pity too.

“But they’re having a great time. I have empathy, but not pity.”

At work Kathy says working in the environment has had a positive effect on her own life.

“I look at life with a different point of view, realising it’s the small things in life that make you happy.”

Small milestons, like their daughter clapping hands, are also what make Evelyn and Hayden Guy smile.

Four-year-old Ava Guy is one of 60 New Zealanders who has been diagnosed with Rett Syndrome.


ALL SMILES: The Guy family does not let Ava’s disability hold them back from having a good time. (From left) Nikita, 3, Evelyn and Ava, 4. IMAGE: Hayley Gastmeier

The syndrome, which affects almost exclusively females, becomes apparent after normal early development starts to deteriorate.

Evelyn says she and Hayden noticed a few things slightly different about their daughter from birth and had her tested for the syndrome after researching it.

She says they were initially “heartbroken” when the results confirmed Ava had the syndrome but have since taken on a more positive outlook.

“All we wanted was a happy healthy girl and that’s what we got.”

The Wainuiomata family has found support in other families living with the syndrome and they have built strong relationships with a group who all have girls with it who are the same age as Ava.

“We’re all sort of blessed with this uniqueness because the girls all have a very lovely temperament.”

Having Rett syndrome means Ava cannot walk or crawl, she has lost her ability to speak, her brain development has slowed down and she experiences seizures.

Evelyn says one of the biggest differences between Ava and her little sister Nikita, three, is that Nikita is becoming more self-sufficient while Ava is travelling in the opposite direction.

“Nikita opens the car door and climbs in by herself, she gets herself dressed in the mornings, climbs in and out of the bath and goes to the toilet by herself.

“Whereas Ava doesn’t, and as she is getting bigger, even changing nappies isn’t as easy as it was.”

Before the couple had a wheelchair for Ava they would push her around in a pram.

Evelyn remembers getting some “really bad looks” because Nikita was two and walking and Ava was three and still in a buggy.

Perfect strangers “thinking they know better” have shared their thoughts and even people that know the family will sometimes make comments like, “oh! She still has a bottle?”

“If you have a child that’s special needs you have to do what you have to do to get through.”

Evelyn says she and her partner see it as a “bonus” that they will have their daughter living with them for life but acknowledge there will be challenges.

She sometimes gets the impression that people think Ava is “easy”, and says they are not aware that there is a whole other side to their lives, as Ava is generally taken out and socialised when she is in a happy, settled mood.

“We kind of shelter the world from some of our reality.

“Ava can go from a zero to a 10 very quickly. She goes from being very happy to quite distraught in seconds.”

Evelyn says although there is education out there about disabilities it is hard for those without “it in their own back yard” to understand.

Ava is described by her mother as a smiley and social child who is loved and adored by everyone.

“Having Ava has made me a lot more thankful, and I really enjoy those milestones.

“They might be tiny, like her clapping her hands, but they’re huge to us and it’s about being able to appreciate that and enjoy it.”


LOVED AND ADORED: Ava Guy, 4, wins over everyone she meets with her smiley personality. IMAGE: Hayley Gastmeier

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