"My son, because of his illness, may accept mediocre services but as his mother I won't accept mediocre services on his behalf."
Elaine wants two things for her son: respect and justice. She has fought for them every day for 14 years since he was diagnosed with paranoid schizophrenia.
“I just do it. I live with it,” she says of her daily battles to have the realities of severe mental illness accommodated by government services.
“For me there is no choice. He is my son. My son because of his illness may accept mediocre services but as his mother I won’t accept mediocre services on his behalf.”
Stigma, discrimination and systemic exclusion are the backdrop to the lives of Elaine, her 28-year old son, and her husband and daughter who share his care and support.
“We not only had to see all his potential forgotten about and not able to be pursued, but then we have had to support him in a system that really isn’t geared to support people who have very complex mental health issues,” Elaine says.
“From day to day he struggles with understanding when someone asks him something as simple as what his name is or what he did yesterday.”
Elaine believes organisations such as Centrelink and Housing NSW could reduce the demands on her son – which might not be onerous for most people but weigh heavily on someone with mental illness.
“Even though those services know – because I’ve told them and they have it on record that my son lives with a debilitating mental illness – they still seem not to understand that on a day-to-day basis he struggles,” Elaine says.
“So for instance they may make an appointment with him by telephone and on that particular day he’s OK, but by the time the interview comes round he’s become so anxious it’s basically impossible to get him there. Then he is often penalised because of non-compliance. There’s no flexibility around the episodic nature of particular types of mental illness.”
Front-line services, including the police, paramedics and counter staff at government agencies, should have ongoing training, says Elaine.
“When you’re going to have people turning up very distressed, they need to be able to recognise the signs and symptoms and know how to manage those.
“Just because someone becomes a bit erratic and they’re raising their voice, it doesn’t mean they’re going to start physically harming somebody.”
In Elaine’s experience, society’s structures and expectations routinely discriminate against people with mental illness, sometimes with very serious consequences.
She recalls an occasion when her son had to go to court in relation to a driving offence. He was told to attend in the morning.
“It shows a total lack of understanding of mental illness to expect somebody to sit in a courthouse from 9.30am and then call them in at 3 o’clock,” she says. “It’s too much to expect anyone would be OK, but for someone who lives with paranoid schizophrenia it’s impossible.”
During the hearing, he kept his hood up, sat down without being invited, and did not make eye contact with the judge, who took exception to his “obvious lack of respect”.
“He doesn’t have social niceties,” Elaine says. “It’s not a mark of disrespect, it’s where he’s at.”
Despite her clear devotion to her son’s wellbeing, Elaine is routinely excluded even from the most routine information about his health care, because service providers are bound to protect his privacy.
She cannot even be told whether he has had his fortnightly injection of anti-psychotic medication.
“If he starts to become erratic and I know he hasn’t had his injection, at least I know what he’s dealing with,” Elaine says. “If he has had his injection then by tomorrow he may mellow out a little bit. I need to know.”
And so Elaine continues to ring the clinic where her son receives his shot, and continues to be rebuffed. She enters each occasion into a diary, noting the date and time of the call and the inevitable response.
She does it as a record for herself and others, as evidence in the event that her son, unmedicated, becomes aggressive at some time in future. “I always have this fear that one day there’s going to be a tragedy,” she says. “As a human being – not even as a mother – I want to be able to know in my heart I did my best to avoid this.”
Living with enormous responsibility and uncertainty has taken its toll on Elaine.
“I live in a hyper-vigilant state,” she says. She throws her immense energy into advocacy and anti-stigma work, telling groups of emergency-services professionals “that when you’re seeing someone with a mental illness you’re seeing them at their worst. And not only is that person deserving of dignity and respect, they have a family that deserves dignity and respect too”.
Grief and sadness haunted Elaine in the early stages. “Now I rarely have those moments because it’s difficult for me to reconcile what we’re dealing with now with what we had 14 years ago,” she says.
“We had this boy who was popular, talented. I look back and I think that was a point in my life where I was totally content. You’re a mum, you’ve driven them everywhere, you’ve done the hard yakka and it’s all paid off. We had that smugness – the feeling that we deserve this because we have worked our fingers to the bone to give our kids whatever we thought they needed.
“And then you get to now, and I can’t remember over the last 14 years ever feeling like that again. My son’s my son but it’s not that boy.
“You either hang on to the past, or you can say, ‘Well, that was a beautiful part of our life’.”