I commenced work with the NDIS in July. In this very short time, my eyes have been opened in a way that I would never have imagined. I am an experienced disability advocate and thought that I knew a lot. To be fair, I am very experienced but the NDIS allows you to see, first hand, the real lives of people with a disability and their carers. To be frank it puts a lot of things into perspective.
I am Deaf and I have fought for a lot of things over the years. Interpreting at university, the National Relay Service, cinema captioning, mental health, education, employment and basic human rights are just a few of the things that I have campaigned for over the years. Often I do it through my work. I just constantly raise the issues and create awareness. I think in deafness we have made enormous inroads compared to 20 years ago. Technology has helped immensely to even out the playing field. Indeed I owe most of my current success and my current job to the fact that this technology exists. I, and many other people who are deaf, have been extremely fortunate.
Of course we are never happy. We always want more. We compare ourselves to countries like the USA and we want comparable access. And we should never stop striving for this comparable access. Australia is a rich country and can afford it; it is our right. To paraphrase Oscar Wilde, “..He who has fought a good fight has had to face every difficulty except popularity.”
I used to be angry about many things but since starting work at the NDIS I find myself less angry. Many friends of mine who have a disability won’t like me saying this but of late, I have begun to realise just how lucky I am. I will explain this a bit more later. I find that I just cannot get angry about some of the things I was previously angry about. The sale of Townsend House in South Australia is an example.
Townsend House is an iconic, somewhat creepy building, that is steeped in history for the Deaf community in South Australia. It stands on land that is a real estate goldmine. It is in the much sought after suburb of Brighton in South Australia, just minutes from the beach. It once hosted a school for the deaf and many Deaf people in South Australia have fond memories of going to school there. I dare say that for many the memories might not be so fond, but nevertheless Townsend House is an important part of the history of the South Australian Deaf community.
The response to the sale of Townsend House has been particularly muted. It was nothing like the response to the sale of the Deaf Community Centre at 262 South Terrace in Adelaide. The sale of 262 caused great hurt and anger in the South Australian Deaf community, and rightly so. It is a little different from Townsend House. The Can Do Group that resides within Townsend House acquired 262 by default. They saved the Deaf Society at a time that it was about to go under. The CEO of the time and the president of the Deaf society promised 262 would never be sold. But of course it was. In the process the heart of the Deaf community was ripped out and very little of the profits of 262 were returned to the Deaf community. It was, to put it mildly, disgusting.
The land where Townsend House is built has been sold. Unsurprisingly, the Deaf community were not consulted. Indeed you would be hard pressed to find any Deaf people that ever go there now. To be frank it is now just a building that has history and the Deaf community have little and next to nothing to do with it. So it was sold. Not many were angry, not many protested. There were pockets of dissent that had the impact of a pea-shooter. For myself, I just saw it as perfectly sensible business decision that Townsend House have made to ensure their continued survival.
The sale of 262 was also a business decision but it was a little different. It was different because the Deaf community had a real stake in 262. The Deaf community were heavily involved in the establishment of 262. I have seen beautifully handwritten records, written by deaf people, of the fundraising that they did to build 262. In short, 262 was built by and for the Deaf community. They valued 262 in a way that they just don’t in regard to Townsend House. I believed then, as I do now, that it wasn’t necessarily wrong to sell 262, but it was wrong to do it without the full and proper consultation with the Deaf community. I believed then, as I do now, that the Deaf community deserved a fair share of the profits of the sale of 262. They got nothing except a Deaf club in Modbury, with no assets for its upkeep and at a place that is almost inaccessible to the majority of the Deaf community. How the Deaf community was treated in that instance was a disgrace. They were ripped off.
Not so Townsend House. Even though it has history, it is just bricks and mortar. It is no longer a Deaf organisation. It is an organisation that supports children who are Deaf, hard of hearing, Blind, vision impaired, deafblind and other disabilities. The sale of Townsend House was simply a decision that will allow these individuals to still receive support. It also allows Townsend House to position itself as an NDIS provider. It was a business decision, pure and simple.
Until this year I might have been angry about the sale of Townsend House. But I am not. You see working within the NDIS, you see things with a different perspective. You see people with a disability barely surviving. They have minimal support. They are living below the poverty line. You see carers who are looking after kids with very profound disabilities, often more than one child with a disability. You meet them and you begin to discuss the support that they require. You know what? Many of them ask for the bare minimum. It does not matter that you outline to them what might be reasonable and necessary. They still only want the bare minimum.
As an advocate who has spent his working life demanding more and never being satisfied, this is profoundly humbling. Do you know what some of these carers say when you point out that they might be able to get more support? They say, “No, it’s my child, that’s my job.” Even when that “child” happens to be in their 30s or 40s. These parents are waking every morning to dress, shower and feed their “children”. They are often also dealing with severe behavioural issues that require them to be on alert at all times. Yet still they ask for the bare minimum.
That’s the definition of unconditional love! That was my dose of perspective!
Resilience is, of course, necessary for a warrior. But a lack of empathy isn’t.