Editorial: System a Cruel Joke

Mark “Bones” Curtis is an incredibly tenacious person waiting for housing for three years and it is difficult to comprehend a housing bureaucracy could be more restrictive to him than the challenges cerebral palsy throws at him everyday.

See related story: Left Waiting and Worsening.

Our tax dollars are supposed to be well spent helping people like Bones, but I question the role of private companies which seem incapable of helping people like Bones, but still benefit from the income given to them from the government and as Bones put it “sit in their air-conditioned offices, with their well paid jobs and don’t give a stuff”.

In June Bones asked me to go to a forum held by Compass Housing in Muswellbrook to get his questions answered.

Their first line of defence was to claim answering the questions would breach privacy…whose privacy???

Bones was sitting right there and while he can no longer speak, his consent and questions were completely clear.

But they seemed to be searching for reasons not to answer the questions and wanted to continue on with their PowerPoint presentations showcasing what a great job they were doing.

Their next line of defence was that the questions could be making some people uncomfortable, indicating the audience.

Seriously? If someone in the audience felt uncomfortable about the questions Bones wanted asked how does their right to comfort trump Bones’ right to answers, but it was clear who was being made uncomfortable.

While we held our ground, Bones furiously fumbled on his keyboard, none of which I could repeat then or put to writing now,  but all of his expletives were valid.

It was stomach churning to watch an organisation which is paid to act in the best interests of people with disabilities behave so paternalistically to the point of not giving Bones the dignity of being heard.

They said they would speak with Bones personally after they had finished their PowerPoints, which were eyebrow raising to many in the room due to some sexist “jokes” including references women riding brooms.

People in the audience, predominantly women, turned to see the reaction of the female boss in the room who was busy using her phone and later claimed not to have heard any of the remarks.

After the meeting they promised to personally visit Bones, which six months later they have not done.

I was appalled to see an organisation whose role was to protect and help people with disabilities treat Bones as if he wasn’t in the room and after three years Bones seems no closer to getting to a place where he can access the therapies he needs to slow the march of cerebral palsy.

His new strategy of trying to rent privately is a long shot, for a landlord to allow modifications paid for by the NDIS to be made for a wheelchair compared to renting to someone who doesn’t need modifications will be difficult.

And under the new NDIS modifications can only be made once, so if the landlord decides to sell the property Bones won’t be able to move and have another property modified.

Bones is remarkable in his determination and is willing to try all avenues.

We joke that I can’t wait to see the back of him when he leaves town, but it is beyond a joke to see a system failing someone like Bones who we should be doing all we can to help have a basic quality of life for as long as he can.

Editor of scone.com.au