‘Don’t worry!’ ‘He’ll be right’: Why do we say all the wrong things to parents of children with a disability?

I remember the feeling: the well-meaning friend trying to offer reassurance about my toddler, which left me feeling dismissed, deflated and alone.

“Don’t worry! He’ll be right! Einstein didn’t talk till he was four! Did you know that?”

I thought, “If one more person says something like that to me, I may actually scream. And I may not be able to stop.”

It’s a feeling familiar to any parent of a young child with any kind of disability.

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Such incidents are far more recent for Claire*, whose son Connor*, who is four, was recently diagnosed with global developmental delay, a term used when a child takes longer to reach certain development milestones than other children their age.

It had taken her months of confusion, anxiety and effort to get the diagnosis — that official documentation, that label, that necessary paperwork the family needs to tear down the barriers and ensure young Connor has an equal chance to thrive in the world.

And while Claire was struggling and stressing and advocating for her child, even friends — especially friends — were saying all the wrong things.

“Every day it would be, ‘He’ll grow out of it,’” she says. “’He’s such a lovely boy. He’ll be right.’

“The fact that he is a brilliant, amazing human being is never in question. I don’t really need strangers to tell me my own son is a good kid.”

The point, she says, is he was struggling. What with? “You name it. Transitions. Following instructions. Figuring out how to play. Toilet training. Talking. All of it.”

There was one incident which left Claire “gutted”.

“We were at the pub one night [with friends] and Connor had just wet his pants at the table. Right? He’s four. And I opened up and was telling the dad of one of Connor’s friends that we finally had an appointment with the paediatrician. And he was just shutting me down, you know, ‘He’ll be right!’

“And that gutted me because I don’t expect randoms to understand. But I did expect this dad to understand. And of course your instinctive response is to start listing his [deficits]. But instead I just felt deflated and so alone. That conversation hurt.”

You can’t believe how devastating that is. In order to be heard, to receive some sort of empathy and support, you must list aloud what is “wrong” with your child. You are somehow required to convince the listener that your child is defined by a long list of deficits and deficiencies.

Think about this. The Australian Federation of Disability Organisations notes: “The medical model of disability says people are disabled by their impairments or differences, and looks at what is ‘wrong’ with the person, not what the person needs.

“The social model of disability says that people are disabled by barriers in society, such as buildings not having a ramp or accessible toilets, or people’s attitudes. […] Removing these barriers creates equality and offers people with disability more independence, choice and control.”

For kids like Connor, this means they need different support in order to learn and reach their potential. Here’s what happens when those are missing:

“I remember a swimming lesson, before the diagnosis, that just broke the camel’s back,” says Claire.

“There were five other kids and mums in the pool. One girl was younger than Connor and she was doing [the class] on her own and making progress. But Connor couldn’t follow [the verbal] instructions. He was clinging to me for dear life, scared and overwhelmed. And the teacher was saying to me, ‘You need to work on his attachment. He has attachment issues. He’s such a mummy’s boy.’

“But my son just needed to learn a little bit differently and eventually I just stopped going and I felt so guilty for not giving him the opportunity to learn to swim,” she says.

Craig Wallace, a disabled man who is head of policy at Advocacy for Inclusion, an organisation funded to represent all people with a disability in the Australian Capital Territory, says such incidents can stem from what he describes as “resource envy”.

“It’s born of a kind of desperate panic that the support a child with a disability requires will somehow be a collective drain on the resources available for other children at the school, in the sporting team.”

Unconsciously or consciously, he says, they see it through the prism of, “What does this mean for my child? What does it mean for the success of my child? Will this drag down my child’s academic scores at school?”

Wallace says this is a dysfunctional situation arising from a historic lack of resources. He also makes the point that not all children with a diagnosed disability necessarily need to be on an endless schedule of interventions to assist them.

But he says, “we haven’t created the space to have a sensible conversation”.

Mitch Wallis, a mental health expert and the author of Real Conversations, a mental health training curriculum, says the golden rule of supporting anyone is “understand first, solve second… and solving isn’t mandatory.

“Most people, most of the time, are looking to feel heard rather than be fixed. And it’s the connection that heals.”

Wallis knows what he is talking about. Not only does he have a masters degree in psychology from Columbia University. Most importantly, he has more than 20 years lived experience with mental ill health, facing life-threatening breakdowns at times. He immediately understands why Claire’s friends, Connor’s swim teacher and so many others have let them down.

“We are hardwired to avoid pain,” he says. “We are conditioned to make any single unfavourable emotion go away. Minimising [another’s experience] is a protection tool which allows people to pretend that the [difficult situation] isn’t happening.

“When someone brings up something uncomfortable, we don’t want a bar of it and/or we want to get the other person out of that pain as quickly as possible.”

But he says, “getting out of it, means getting into it with them first”.

He gives the example of his own mother, who has been a constant support to him, even tattooing a heart on her arm in support of his #heartonmysleeve movement, which encourages people with a mental illness to have the courage to talk about their experiences to help others.

“Instead of asking my mum, ‘Well, have you taken Mitch to see a doctor?!’, you say, ‘Seeing your son in pain must be stressful. How is that impacting you?’

“Supporters need support. Be prepared to sit in the discomfort and awkwardness and listen.”

And that, he says, takes courage.

“We’ve lost a core part of what it is to be human, which is to feel,” he says. “Feeling takes courage.” — Guardian

* Names have been changed to protect privacy