Health / Inequality

Disability campaigners fight for representation at Parliament

17:55 pm on 23 March 2021

Disability campaigners gathered on the steps of Parliament today asking to be seen, heard and have a seat at the table. 

Listen to the full report here

A quarter of the population have disabilities - but campaigners say they aren't represented in parliament. 

The rally, titled a Hīkoi for Hope, presented a petition and a box full of stories asking the government to listen.

From not being able to scan Covid-19 QR codes to giving up your benefits if you want to get married - these are just some of the roadblocks the disability community face. 

Gerard Zwartjes has lived in his car for nearly 19 years. 

He said during that time, he had battled with the welfare system to try to make ends meet while paying big medical bills. 

Gerard Zwartjes has battled with the welfare system to try and make ends meet while paying big medical bills. Photo: RNZ / Dom Thomas

Zwartjes said he felt penalised for his disability. 

"There's a lot of us here having to live on $250 a week. 

"And once you get severely sick like I did, the cost of living actually goes up, and my income went down, you know, it just doesn't make sense. 

"Then when I say 'please help me get better and I can get off your books and move on with life', they are only interested in the short term solution, only interested in saving as much money as possible in the short term."

Zwartjes said the system was unfair, and invisible disabilities made it even harder to be heard. 

Juliana Carvalho, a paraplegic with lupus, had been fighting for 18 years to stay in New Zealand.

Juliana Carvalho presents a petition to parliament on 23 March, 2021, saying legislation stops her and other people with disabilities from getting residency. Photo: RNZ / Dom Thomas

She said she was viewed as a potential cost and burden - and the legislation stopped her and other people with disabilities from getting residency. 

Carvalho today delivered more than 37,000 signatures on a petition to get that changed. 

"I ended up in a wheelchair when I was 19 years old, so I lived both sides of the story. I notice the distinct difference and I'm the same person so I want to be treated with the same respect I was treated before becoming someone with a disability."

She said the petition was not about her, it was about changing a system which discriminated against people and the way they were disregarded, despite what they had to offer. 

"I promise you we are way more resilient and creative. You know, we managed to survive through this world that is not designed for us. We can definitely contribute."

Māori Party co-leader Debbie Ngarewa-Packer stood on the steps and told the disability community her niece had died this morning. 

She said the little girl with disabilities was not expected to live past age four, but exceeded all expectations and lived 22 years. 

Māori Party co-leader Debbie Ngarewa-Packer gave a mihi to her niece who died during Hīkoi for Hope. Photo: RNZ / Dom Thomas

"We saw the pain that the whānau went through to just give her the beauty of freedom and dignity." 

Her words were a mihi to her niece and the wider disability community, she said. 

"To all of those of you here today that teach us in every way, what discrimination takes away, and the opportunities they don't afford for the absolute magic you have within you."

Disability campaigners presented a petition and a box full of stories asking the government to listen on 23 March, 2021. Photo: RNZ / Dom Thomas

Dr Huhana Hickey, who has been campaigning for disability rights for 45 years, said change needed to come. 

"The next generation need to hear the wero, need to hear the challenge that it's time your voices need to be heard and you don't need to be afraid anymore. 

Dr Huhana Hickey. Photo: RNZ / Alexander Robertson

"They are listening, so we need to make it very clear, we want to be at the table but we don't want to just be there talking. We want to be there making the decisions and it has to be by us, not by others, making them for us."

Dr Hickey handed over a box filled with personal stories - among them one from a family who spent 30 years not knowing they could access help. 

Another family carried their dad around because they could not afford a wheelchair. 

Associate minister for social development and employment Priyanca Radhakrishnan accepted the box and said the government was committed to improving accessibility. 

Photo: RNZ / Dom Thomas