Zola and Bernard

Zola and Bernard met on the first day of primary school in the late 1960s, at a school for children with physical disability.

They became instant friends, rarely apart for the next 50 years, until Zola died a couple of years ago.

‘From a husband and carer perspective, I just wanted what she wanted, what made her happy,’ Bernard said. ‘She wanted to get married, we got married. She wanted to have a baby, we had a baby. She wanted to get a job and live a life like everybody else.’

In the mid-1990s, Zola approached a nearby disability residential village about a job.

Bernard told the Royal Commission he wishes Zola had never taken the job.

The village paid Zola less than $2 an hour. The premises were not accessible. There were no grab rails in bathrooms and many doors were not wide enough for her wheelchair. There were no disabled car parks and the bitumen was unsealed, making it unsuitable for wheelchairs.

Bernard said there was a ‘wall of discrimination’ between employees with and without disability. Staff yelled at Zola, spoke down to her and called her names. Management pushed Zola to complete tasks that were not safe, such as lifting books in and out of filing cabinets.

One day, Zola’s wheelchair became stuck in the carpet near her desk. She fell, injuring her knee, back and neck.

Hospital staff wouldn’t treat her until they had a worker’s compensation claim number. The employer refused to cooperate because it would ‘put up their premiums’.

Bernard had to engage solicitors to resolve the issue. He was ‘completely blindsided’ when the insurer claimed Zola’s disability was a ‘pre-existing condition’ and she wasn’t eligible for compensation.

Zola’s health deteriorated and her mobility and independence decreased. She went from being able to stand, to being unable to weight-bear at all.

The family had to move to a home the department of housing had modified.

The main bathroom was ‘completely unsuitable’. The porous tiles shredded the wheels of Zola’s wheelchair and Bernard had to line the bathroom floor with sheets.

Zola couldn’t use the toilet because it was too high and on the wrong side of the room relative to her ‘good hand’. She had a serious fall when trying to use the toilet by herself and became afraid to go to the bathroom alone.

A few years ago Zola needed to have a colonoscopy, but could not complete the colonoscopy preparations at home because of the toilet.

Bernard repeatedly asked the hospital to allow Zola to complete the preparations in hospital, but they advised it must be done at home.

Zola didn’t know what to do and kept delaying the procedure.

Bernard tried to get the department of housing to modify the bathroom. When they refused, he bought and installed a new toilet himself, but couldn’t seal the floor. Zola had to spend the entire day sitting on the toilet while she completed the preparations.

Eventually, Zola was diagnosed with bowel cancer that had spread to her liver.

Doctors gave her mild chemotherapy which ‘didn’t do anything for her’. ‘They told her to go home and die,’ Bernard said.

Bernard found a liver surgeon at a different hospital who removed most of the liver. As an outpatient, Zola started strong chemotherapy. She developed a urinary tract infection and had to be admitted to hospital.

Bernard said hospital staff were extremely lax about infection protocols even though they knew Zola was on chemotherapy and had virtually no immune system. He was horrified when they placed her in a general ward ‘with people who had the flu’.

‘It was because she was presented as palliative care, they didn't give a damn,’ Bernard said.

Zola contracted influenza and died.

‘In the 60s, 70s and 80s, people with disabilities were teased, ridiculed, given a low self-esteem, belittled, bullied, beaten up … We thought [those days] were gone … However, adults with disabilities are still being discriminated against, are still sneakily being bullied and taken advantage of.’