In 1998 Simon Brissenden, an activist in the The Disabled Persons Independent Living Movement, wrote that “the equality we are demanding is rooted in the concept of control; it stems from our desire to be individuals who can choose for themselves”. Fifteen years later, Australia created the National Disability Insurance Scheme (NDIS) in part as an attempt to fulfil this demand. To quote the NDIS’ own PR, the scheme purports to give disabled people “greater choice and control over how they want to live their life”. But while the NDIS has certainly brought greater freedom and dignity to some participant’s lives, the Royal Commission into Violence, Abuse, Neglect and Exploitation of People with Disability documented countless testimonies that speak not only to the endemic of abuse and neglect in the scheme, but also to the casual disregard many services have to their clients’ need to exercise choice and control over their lives.

While NDIS participants and disability activists have contributed a great deal to our understanding of why services continue to harbour abuse and neglect, it is incumbent on service providers to stop, reflect, and explain why these issues persist. And indeed, the Royal Commission addressed this in part by dedicating a section of its final report to testimonies from service providers. However, when I read the report myself I was disappointed to find that almost all the testimonies were provided by CEOs and upper-level managers at private disability providers — people who rarely have any meaningful interactions with any of the participants themselves. As a result, most of the Commission’s recommendations in the section in question revolve around strengthening the policies and mandatory procedures to which workers are subject (like a role out of a Supported Decision-Making Guide and a standardised national worker registration scheme).

While policy reform may be needed, if you only ask CEOs what the problem with the NDIS is, they will inevitably diagnose the problem, and prescribe the solution, in terms of faulty policies and funding structures — paper and policy are what they know. But as a direct support worker myself, I have a very different way of thinking about the issues with NDIS, and it doesn’t seem to me that the problems can be solved simply by optimizing the policies and procedures to which workers are subject. In fact, I think the framing of the problem exclusively in these terms is symptomatic of the problem itself.

After years of support work, and after soliciting opinions from countless colleagues, I think one of the main (and rarely discussed) contributors to malpractice is the way disability support work has been proletarianised.

Proletarianisation is a term coined by Bernard Steigler to describe the process by which skill and knowledge are removed from the person of the worker and instilled in impersonal policies, procedures or machines, of which the worker is a functionary. The industrial factory is the archetype of proletarianization. Where once the convergence of a diverse range of skills and expertise into the body of single artisan was required to produce even relatively simple everyday objects, now this knowledge is contained by engineers, standardised procedures, and the intelligence of the machinery itself — while the direct factory worker is reduced to an “unskilled” appendage to the machinery and a receptacle for procedures designed by professionals completely removed from the execution of the work itself. The absence of support workers’ voices in the design of any of the policies and procedures they are expected to execute, as well as the framing a response to malpractice in terms of the need to optimise the policies and support plans to which workers are subject — in short, the reduction of the worker to executor of policies — exemplify the way a process of proletarianisation has taken root within disability support work.

The flip side of proletarianisation is the degradation of the worker themself. Indeed, many of the support workers I interviewed expressed that they don’t feel valued in what they do, how they feel like their work is “easy”, “unskilled”, “just a uni job”, “unserious”, and “underpaid”. Now, it’s worth considering how workers who don’t feel any self-respect in what they do could reliably show respect for the participants they work alongside?

However, the more salient point is that you simply can’t proletarianise support work. It won’t work.

Why policy and proletarianisation won’t fix support work

You can, perhaps, proletarianise the production of physical commodities — like tin cans, for example — without reducing the quality of output (although, many people would disagree with this). But “care” is not an object that comes out of a machine. Support workers, rather than creating objects, create a caring relationship. The scrupulous observance of organisational policies and “best practice” codes is not sufficient to create such a relationship. This can only be created when workers take the time to understand their clients and build trusting, authentic, equal relationships with them. Treating someone in a proletarianised way — as an object to which you apply a correct set of procedures — is the opposite of building a relationship with them. This is not to say that policies aren’t important, but they only work insofar as they bring more care and trust to the support relationship. Carolyn, a social worker I interviewed, summarises this nicely.

Minimum standards whilst essential do not in themselves support increased quality of life for the client. It aspires to a no harm status for the client, which is not very aspirational. What the research and my practice consistently demonstrate is that the most consistent factor that supports meaningful, lasting change, such as personal growth, independence, empowerment is the relationship between the client and the worker.

This is echoed by Yi-ying, a support worker for people with Autism Spectrum Disorder:

The best part of the work are the spontaneous moments you have when you really build rapport with someone… and I think that’s when I do my best work too and when you have those breakthrough moments… when I really feel like I know the person through the relationship.

Peter goes so far to say:

The good support workers are the ones who realize that there is a difference between what the organization wants you to do, and what is actually best for the client.

This is not to say that support work is an “unskilled” job that simply calls for a “nice and friendly” personality. From finding ways to communicate with nonspeaking clients, to informal counselling, to responding to participants in crisis situations — disability support requires a deep skillset. But for the most part, you don’t internalise these skills as formal procedures. They are habits — “soft skills” — that come from spending time with people and learning the idiosyncrasies of their support needs. You learn how to support someone well by learning what will work for them, not what will work for people in general. As such, any procedural, “system-wide” approach to improving the quality of support is likely to fail. A good support worker tries to forget everything they think they know about disabled people and starts from a place of resolutely not knowing who their clients is, and then, through the slow process of building rapport, builds toward a highly idiosyncratic understanding of how to meet their needs.

But in practice, external “evidence-based expertise” tends to prevail over such wishy-washy sentiments about relationships. Karishma, who works with intellectually disabled people, says:

You get all these OT’s and psychologists speech pathologists coming in – who usually only spend like an hour or two with the client a month — who get us to implement these all these fancy strategies with the person… and sometimes they work great if the person happens to fit into a certain box that the support was designed for, but I often just find that the strategies are totally disconnected from the subtleties of who this person is… and as a direct support worker you kind of know from the get-go that it’s not going to work.

Cordelia, who works at a day center for people with intellectual disabilities, suggests that the crowding in of expert knowledge is not only often ineffective, but drowns out the voice of the person too.

Well, one thing is that I am constantly mediating between all these people’s perspectives on how support should be delivered. Carers, OT’s, speech pathologists, psychologists, managers — they all have input. And not only do my own feelings about the support get drowned out, but the clients too.

In short, the allocation of the “intellectual labour” of support to external experts not only strips the worker of their input, but at times eclipses the perspective of the client.

But perhaps the most concerning aspect of all of this is the way the spirit of proletarianisation is internalised by the worker themself. Rather than aspiring toward the creation of trusting, equal and responsive relationships, some workers do what is expected of them at an organisational level while remaining mentally and emotionally absent from their relationships with clients. The idea that a person is having an emotional experience that needs to be responded to in the context of a caring human relationship gets replaced by a focus on managing risk, ensuring that one can demonstrate that they have followed policy guidelines, and implementing externally produced “behavioural support strategies”, the function of which is to instruct workers on how to manage (discipline) “difficult” behaviour and build clients” capacity to do more things independently.

One worker at a disability day centre told me that clients, and especially those who are nonspeaking, often communicate their needs through their behaviour, body language, or non-symbolic vocalisations. However, often these behavioural cues are simply ignored or, if the behaviour is “difficult”, disciplined. Framing support work as a matter of policy compliance means that workers don’t have to confront what the disability theorist Lauren Poole describes as the “awkward reality of unfamiliar body-minds” — instead, they can check-out and mindlessly do what the “support strategy” tells them to do. One interviewee who works with people with ASD talked about situations where a participants appear to be in distress and start behaving in a “difficult way” (banging doors, yelling loudly), but workers simply see the behaviour “tick” or a “stim” or just dismiss the behaviour as attention seeking. This shows how the personal, idiosyncratic meaning of a participants’ self-expression is muted through the facile application of standardised “disability theories” and practices.

Despite all this, we do need good policy tools that hold workers accountable to the rights of the people they support. We can’t just blame all the bad things that happen with the NDIS on upper-level managers, and workers should be held accountable when they choose to disrespect their clients. And while it is frustrating that allied professionals often dictate support frameworks to people that they barely know, they do bring unique skillsets that can improve the quality of supports. I am not saying we need to do away with expertise. Rather, to quote Carolyn, that the basis of any good care relationship is the relationship itself. Proletarianisation, by objectifying the worker as the implement through which rationalised policies are conveyed, erodes the quality of the supporting relationships. As such, any policy and practice that tries to improve the standard of care can only do so by fostering strong, trusting relationships between workers and participants, and centring participants’ own inimitable understanding of what they need from a supporting relationship.

While workers could benefit from additional training and the NDIS could be strengthened through more thorough regulation of providers, the more pressing matter is to create dignified jobs for support workers where they are encouraged to build enduring healthy relationships with their clients. The first way you can do this is by creating more dignified working conditions for the workers themselves. In addition to the “deskilling” of support work, low pay, stressful (and sometimes dangerous) conditions, chronic staffing shortages, the absence of professional supervision, and a culture that looks down on disability work, all contribute to high rates of turnover in the industry which means that workers do not stay in jobs long enough to build good relationships with clients. Moreover, stressful and understaffed workplaces inevitably leads to a drop in the standard of care and creates the conditions where neglect can occur.