The NDIS Heroes, or Are They?

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.

 

 

13 thoughts on “The NDIS Heroes, or Are They?

  1. Nice expose’ of the deceptive uses of language so common in human affairs generally and the NDIS specifically. ‘Empowerment’ language sounds so appealing and the author has nicely unveiled its deceptive use. But their use and description of SRV is faulty, possibly through poor teaching of the topic (we don’t hear who delivered the training) or through poor understanding of what was being taught. Wolfensberger – the developer of the concepts of Normalisation and Social Role Valorization also wrote about the problems associated with “empowerment” and the faulty thinking underlying such approaches. How more effective the paper might have been had the author used the inconsistency of the NDIS in (presumably ) using SRV while adopting so-called ’empowerment’ language and approaches. But their revulsion with SRV comes from a faulty notion: SRV thinks disabled people have less value because they are disabled, but that’s not what SRV says. SRV says that certain individuals and groups are given no/low value because the valued roles everyone else gets that positive shapes their identity are denied to disabled people. SRV simply points out that devalued people get treated better when they are seen as valued and they are seen as valued when they are given access to valued roles. We know that everyone is valuable, but not everyone is valued – and SRV simply draws our attention to that fact and provides a means of correcting it. Now what systems go and do with those ideas is a different matter, but care should be taken not to confuse the concept with the way people and systems use it.

    • Yes you are correct, but it’s a dangerous theory because it is ambiguous. People interpret value as what it means to them. Whatever Wolf meant people have taken it and run with it. It has caused untold damage. It’s a bit like what fundamentalist religious people do with religion. Bottom line is too many service providers have used SRV to try and make people with a disability conform to the norm, which to them is as close to being able bodied as possible … that’s where the damage happens whether Wolf meant that or not.

  2. The ambiguity is in your interpretation, not the theory. By the way, its an empirical construct; it predicts how people will be seen and treated under various conditions. Its a not a philosophy. It describes the way we all can see and perceive others. I strongly suspect you are interpreting these realities through your own value system implying we “should’ see people as belonging, valuable etc irrespective of how they are being presented and what roles they hold. That’s a nice philosophical idea, but its not how humans operate. In that sense, SRV accurately describes how we function towards one another under certain conditions and uses that knowledge to construct an approach that improves people’s lives. Opposing the ideas in SRV is like saying I object to gravity – it should be outlawed because I think its ambiguous. But unlike gravity, SRV can be used in different and varied ways depending on the culture you are in (and ours has myriad ways of supporting people in culturally valued ways rather than the culturally devalued ways so many people with disabilities get treated in, such as segregating them in order to receive a service ) and the persons/groups identity/preferences and choices, you are supporting. In other words, its a set of principles, and suitable approaches that maintain consistency with those principles in any given situation still have to worked through. Best wishes with your continued learning.

    • The simple fact is SRV promotes an idea that people will be more valued if the.are.doing things that society values as a whole . .. yes that is true but doesn’t make it right and because of that human factor the idea is abused and used to justify policy to make any number of people conform with what the decision makers consider of value .. eg hearing is more valuablenthanndeaf, walking.mote valuable than wheelchairs .. that alone makes the theory dangerous and why it needs to be left in the past where it belongs ….

  3. Oh, before I go, you are rightly concerned about people’s personal values dictating how other people should lead their lives. That is a relevant concern. But SRV doesn’t teach that. SRV suggests the values agreed upon in the culture as being good and beneficial for people should usually (though not always) be our reference point. For instance, that good health and that a decent education are worthwhile values becomes something we aim towards for people with disabilities (or any other people seen in devalued ways) in a broad sense. What that actually looks like for each person could vary greatly, anything from doing yoga to getting needed physio – but again, a culturally valued way rather than the culturally devalued that has historically been given. This is one of the inherent weaknesses of SRV however; it depends on what a culture values. But not all cultures value good things (take genital mutilation as an example). And SRV would suggest that we are cautious about using culturally valued practices that reinforce negative stereotypes about people or are harmful in other ways. I think that in the absence of any other overriding empirically based construct, SRV has an enormous amount to offer people and families, workers, agencies, systems and the community as we strive to achieve many good things in life for people who have typically been denied access to such things. SRV defines some clear goals and a way of achieving those goals, and it has contributed to transforming the service system, especially for people with intellectual disability.

    • No it doesn’t teach that … It doesn’t say one thing is better than another … It doesn’t outline anything … It just says, and I quote … From the SRV website …. good things any society has to offer are more easily accessible to people who have valued social roles … Make of that what you will … But it leads to a “Be like us ” policy which is abhorrent.

      • Where does it say be like us? And since when does being treated like everyone else in society as a member and citizen become a bad thing? Is radical individualism the answer you suggest? Let me lay claim to every good thing (friends, work, choice, rights, income, belonging, growth, health) because I demand it? Others must accept me while I remain in devalued roles others have given me (eternal child, menace, burden, object of ridicule, sub-human). I have worked in the field for 40 years and have been involved in the lives a very many people across many countries and what people tell me repeatedly is that they just want to be treated like everyone else. I am concerned that you should regard that as abhorrent.

  4. No it doesn’t teach that … It doesn’t say one thing is better than another … It doesn’t outline anything … It just says, and I quote … From the SRV website …. good things any society has to offer are more easily accessible to people who have valued social roles … Make of that what you will … But it leads to a “Be like us ” policy which is abhorrent.

    • The principles of SRV outline many things associated with building valued social roles, enhancing social image and enhancing the competencies necessary for holding many valued roles. What you are quoting is a probabilistic calculation of what one can expect to see when a party obtains a valued role. SRV is being descriptive of a reality. It is just saying that if you want people to obtain access to the good things of life, then obtaining a valued role (valued in the eyes of society) will be key to achieving that. The opposite is also true; if you don’t get a valued role (but remain ‘disabled’ in the eyes of observers), then you probably won’t be given access to the good things of life. End of story – that’s all SRV is pointing out; the probabilistic relationship between the roles you hold and the value you are accorded. I suspect you are upset by this because people should be accorded value anyway. Well yes, but such a position is ideological, not empirical. That’s a “religious’ view about how other people should behave, but usually do not. Whereas SRV is using the typical dynamics of human perception to show how we can get “observers’ to value people formerly devalued. I suspect its your own value system that is preventing you from seeing these concepts more clearly.

  5. Yes,they do and they are all patronising and assume societal valued norms are more likely to garner acceptance and success. Hence policy is developed with that in mind, meaning programs are anything but person centred but focused on creating societal mini mes… It’s a very condescending theory that leads to condescending and controlling programs.

    • Well we’ve had controlling and condescending programs for centuries and that’s because the people they “served’ were seen in devalued ways. Its being valued that makes the difference, not being empowered and learning to shove your weight around. But you seem to want unconditional valuation. Nice idea, just doesn’t happen.
      I think you are mostly railing at society for making judgments about people at all….”no one should judge’; the judgement free individual. Yet look at your own judging: ‘condescending”, ‘controlling”, “abhorrent”, “patronising”. You seem to be at war with the culture when we probably live in the most accepting culture in history even at the cost to its own direction and stability. Its no longer a culture of ‘us’ but a culture of ‘me’ and ‘my’, just as long as the government rescues me from all my poor decisions. Oh but wait, there is no such thing as a poor decision, there is only my right to make it irrespective of the costs to me and to others. Well, good luck with that.
      By the way, I agree with your broad assessment of programs. They are mostly awful, and I could show you how they measure up against evaluation tools designed to show their impact. No argument there. But that you should blame SRV is ill-informed and incorrect. For sure, many embrace the language of SRV as a way of disguising to their second rate programs – so its great you are not fooled by that. There is a big difference between the rhetoric and the reality – and I think your original article was laying claim to that. But SRV did not cause that, its actually trying to defeat such dishonesty with people who are conscious about what it is they are doing and the effect on others.
      So, that’s all from me.

    • Might you think a little more deeply? SRV didn’t invent devaluation, it simply describes it. In the literature devaluation has also been called such things as ‘marginalisation’, dehumanisation’, ‘racism’, ‘violence’, ‘genocide’, and ‘prejudice. Does using the word ‘marginalisation, marginalise people, or just describe what can be done to people? Does having a word like devaluation help us understand what can take place and what I can do to people without even realising it? If you think devaluation exists because of SRV, then you are ascribing SRV more influence than is possible. Can you see the difference between the values/beliefs we hold and the realities around us? Is your religion that all consuming that talking about a reality is not permitted and you will rage against others from studying that reality?

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