I have all my teeth and my brother has none. There’s a reason why

Recently I accompanied my brother, Simon, to the dentist to have his final 12 teeth removed. For decades, they have been rotting in his head because he has never been able to look after them properly, and a chronic addiction to soft drink has taken its toll.

In comparison with my brother, I have all my teeth and they will probably (mostly) still be there when I die. But I am no paragon of dental virtue and this is not the only area where our lives have wildly diverged.

Rosie Beaumont pictured with her brother Simon when they were younger.

Simon left school with no post-graduate options, despite free university and our parents holding education in high regard. He has never held a job, travelled overseas or had an intimate partner, whereas I have enjoyed all these opportunities and more.

The difference between the two of us is that my brother is disabled, and I am not. Life-long cognitive and psychosocial disabilities have dealt him a hand filled with barriers and disappointments, and while the types of challenges he faces in his daily life would send me to the wrong side of the law, he has learnt to suck them up with grace.

But many of Simon’s most serious problems are not directly caused by his disabilities. He doesn’t have a wheelchair that can’t negotiate stairs or doorways. There are no communication aides or life supports. Simon requires help because of diminished cognitive functions, like memory and organisation, and he needs swift intervention when mental illness takes its toll. He is reliant on giant bureaucracies for the delivery of these supports, and it is there, in the policies, decisions and actions of those human systems that, all too often, his problems lie.

When our parents died, we were forced to sell the family home so Simon could continue to be eligible for treatment through the public health system. Rather than inheriting the home our parents left him, he has had to rely on supported government housing. When he experienced a difficult mental stage, routinely leaving his front door open and wandering the streets, he was sent to the mental health ward of the local hospital where he was left for eight months until I finally got him out with the help of a disability advocate.

As I sat with his new caseworker at the end of that terrible time, she breezily informed me – before she left the room to find a stapler – that he had probably been repeatedly assaulted in the hospital.

Over the years, Simon has had case managers who have defrauded him and support workers who have been emotionally abusive. There have been doctors demanding he undergo medical treatments and tests he does not want, and broad resistance to the idea that, just as the rest of us have a right to say no to a camera being stuck up our bottoms, Simon should also be able to exercise that level of control over his body.

After sitting for three years on the public dental list to have dentures fitted, we were suddenly informed that the system had no capacity and Simon would have to seek help in the private sector –hence our recent visit to the dental surgery. And while I don’t complain about taking on this responsibility or the eye-watering cost – although my tears are still flowing – I do get slightly irate when I think we could have pursued this option years ago, if we’d known this was a likely outcome. It would have saved Simon further discomfort and deterioration of his condition, and given me a chance to do some busking to raise the funds.

As a society, we have come a long way in dealing with disability, abandoning the practice of dumping people in institutions where their legal and human rights have been largely overlooked. But the denial of choice, control and dignity is still a common problem for people with complex support needs, who rely on systems that routinely fail to provide them with accurate information, timely decisions or reasonable options for their care.

Despite the well-publicised troubles of the National Disability Insurance Scheme, its investment in support that helps people participate in their communities is having a positive impact. At my local leisure centre, the mood is upbeat as the cafe fills with people in wheelchairs, drinking coffee and laughing with their support workers, and the loud cries of non-verbal people enjoying a physiotherapy session in the warm-water pool no longer attracts embarrassed looks or disapproving stares. It generates smiles.

If, as a society, we can evolve from segregating to warmly embracing people with significant disability, then surely we can also do better than a two-tiered health and human services system that is content to offer them life outcomes that the rest of us wouldn’t accept.

While the unmet demand for disability support is daunting, this should not stop us from efficiently administering the disability services we do offer or aiming high for what we want to deliver to our most vulnerable community members. And despite our experiences to date, I am still hopeful that one day soon I can take my brother out for lunch and we can both order a steak.

*Simon’s name has been changed.

Rosie Beaumont is a Melbourne-based writer.

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