I worked in the NDIS environment for over three years. I was a hero. I was told so all the time. Not by participants but by the bosses above me. You see the motivation for us was that we were helping Australians with a disability live “ordinary lives”. We were helping Australian’s with a disability to be part of our society. We were making them happy. We were making them more whole. For our work, either as a LAC or a planner empowered Australians with a disability. WE WERE IT, without us Australians with a disability would be NOTHING.
Ok! I am exaggerating a little bit. Just a little bit though. But I am not kidding when I tell you that one of the key catch phrases was empowering Australians with a disability to live ordinary lives. Empowered and ordinary lives were mentioned often. I mean, for fucks sake, a group of us actually had to sit through a week long training session that centred around Social Role Valorisation, aka normalisation. And it was endorsed by and funded by the NDIA. I didn’t make myself too popular by suggesting that the way we could prevent Johnny with spina bifida getting his feet sunburnt was to either buy him sunscreen or buy him some kneecaps (Get it?) It was an actual case study, I kid you not. My attitude and flippancy was part of my disgust at having to sit through such drivel and insulting training.
Now let me say this now. Any person working in the disability sector who thinks their role is primarily to empower people with a disability has got it wrong. Any person that thinks the NDIS is responsible for assisting people with a disability to live “an ordinary life” doesn’t get disability, or even life for that matter. Any person that still follows or endorses Social Role Valorisation (SRV), please stop.
Let’s remind people what the basic idea of SRV is. The root of SRV suggests that, ” ….good things any society has to offer are more easily accessible to people who have valued social roles. Conversely, people who have devalued social roles, or very few or marginally valued ones, have a much harder time obtaining the good things of life available to those with valued social status.” Let it also sink in that I have copy and pasted this from the International Social Role Valorisation Association website.
Consider this concept of Ordinary Lives – What it basically means is that a person who does the things in life that we consider “ordinary” is more whole and more valued. So if a person works, that’s good, they are more valued. If they earn a good wage, they are more valued. If they do things considered ordinary like catching a bus, socialising with people, partaking in activities they are more valued. The normalised person is more valued.
Now let’s consider empowering someone to live an “ordinary life” This is what we were often told was our role in NDIA land. This was one of the key motivational catch phrases in the NDIA. The basic principle of our job was to make sure that Australians with a disability are as NORMALas possible. Because the concept of ordinary in this case is NORMAL.
Empower means to give power to. It means that I as the NDIS person have power to ensure Australians with disability can be NORMAL as per the idea of Social Role Valorisation. I am like a light switch, I turn that power on or off at will. This is my problem with the word empower in a human services framework, mainly that it assumes that the power is mine to give. It is not. I will come back to this.
Firstly let us consider what society considers ordinary, particularly through SRV eyes. It implies that a person with a disability will only ever be valued if they are doing the things in life that others value. So if you walk, you are more valued. If you hear you are more valued. If you see you are more valued. If you work you are more valued. If you pay tax you are more valued. You get the gist? And simply by striving to make people with a disability as ordinary as possible we devalue their very existence. It is a truism that many in society consider that without these NORMAL things people are lesser beings.
Now I know people that promote SRV don’t necessarily feel this way BUT when you promote a concept of normalisation that is what happens. That is why people cry tears of joy when little Sally walks for the first time but get sad when she chooses later to use a wheelchair because its less painful and easier. That is why its wonderful that Peter can hear something with his cochlear implant but tragic when he decides he preferred not hearing at all to the sound that the Cochlear implant provided him.
That is why people with a disability who find it hard to gain or be employed, through no fault of their own, are considered burdens. The very concept of “ordinary” as promoted through SRV and many within the NDIS devalues disability in any shape of form because it considers the state and life of a person with a disability as not normal. And this is why SRV and the concept of “ordinary lives” revolts me so.
I would love the NDIS and all human services to stop using the term empower. Power is not any ones to give. Everybody has power. The problem is that our society often takes it away through poor design and condescending attitudes. Aboriginal and Torres Strait Islander people are a prime example. The whites, the normal ones, consider Aboriginal and Torres Strait Islanders as not normal and troublesome. We think it’s our role to fix them and control them so that they don’t harm themselves. So we give them welfare cards so that they can’t buy alcohol. We are better you see, much better than them. Or so we seem to think.
But we think we are empowering them. We think we are empowering them to take control of substance abuse and social issues in their communities. They can’t do it themselves so we will do it for them. It is for their own good you see. We the heroes!
People will hate me saying this, but a similar attitude exists within the NDIS. Thats why they use terms like reasonable and necessary. Thats why a key platform of the NDIS is value for money. That’s why the NDIS has a a Typical Support Package and one must justify with oodles and oodles of evidence if ones needs should be above the Typical Support Package. Thats why they have a standard price of around $ 8500 for a manual wheelchair. If the price is over that then the person with a disability must jump through hoops to prove the need. For people with a disability there is no dignity, there is no power
That’s why the NDIS will only provide standard hearing aids and hardly ever approve hearing aids above that standard. Thats why they have patronising ideas such as parental responsibility and take it upon themselves to decide what these responsibilities are rather than provide appropriate support. That’s why they deny Auslan to families because they have speech therapy and they consider that is enough. They dictate and control.
Yes, the power is entirely with the NDIS. They can chose to provide it or take it away as they see fit. They can switch it on and off like a light switch. All in the name of sustainability of the scheme. That’s what EMPOWERING in the land of the NDIS is about. It is deciding what someone can and should have. When they say YES they have empowered those lovely people with a disability, What saints they are. When they say no, they have empowered them too because they have ensured the sustainability off the scheme for generations to come. (Read this with dripping sarcasm.)
This is everything that is wrong with the NDIS. I am here to tell you that if you are working for the NDIS you have been EMPOWERED by people with a disability not the other way around. That car you are driving, that house you are paying for, that holiday you are having or that fine wine you are drinking tonight is because of people with a disability. Without them where would you be?
I am here to tell you that it is obscene that the CEO of the NDIS is earning$700 000 a year while the NDIS quibbles over the cost of a hearing aid or wheelchair. I am here to tell you that the Chair of the NDIS Advisory Board earns more in one year than many people with a disability get in their plans over five years.
I’m here to tell you that that support coordinators, that technology providers, that support workers, that wheelchair mechanics or that plan managers have a business because people with a disability exist. I am here to tell you that thousands of people that have a job and an income do so because of people with a disability. I am here to tell you that they are the SERVANTS of people with a disability. They do the bidding of people with a disability, not the other way around.
I am here to tell you that the NDIS was set up based on human rights. Human rights that people with a disability already have. BUT because of non disabled and their neglect these human rights have been denied. I am here to tell you that the NDIS is an investment model based on investing so that people with a disability are able to participate in the community as they see fit. Through that participation they are creating business and dollars that ultimately will pay for the NDIS and some.
It is not the job of people that work in the NDIS or the job of people that support people with a disability through NDIS money to tell people with a disability what life is ordinary. It is not the job of the servants within the NDIS framework (the LACS, delegates, team leaders, support workers service providers etc .. ) to tell people with a disability just what rights they have and decide what is appropriate for them. Your job is to serve, to listen and ultimately do what is needed for people with a disability to achieve their goals and partake in society in whatever way they wish. That is their right, just as it is the right of every other human being,
In short the power imbalance is wrong. The real bosses of the NDIS are people with a disability. Everyone that earns money and makes a living through the NDIS does so at the the will of people with a disability. Remember that and remember where the real power lies. Then just maybe, just maybe the NDIS will achieve what it was established for!
You aint no heroes. You are there to serve.