The limits of caring

Introduction

There’s a passage in a book on the importance of free speech that seemed to me to encapsulate our current situation: “We would rather live in a world where love and compassion triumph over hatred and bigotry. We believe that we have a responsibility not only for the wellbeing of ourselves but for those around us…All of which amounts to a substantial bedrock of shared values on which we can build.”

My attention was captured by the words “shared values”. This is further articulated in a Wikipedia entry: Personal values exist in relation to cultural values, either in agreement with or divergence from prevailing norms. A culture is a social system that shares a set of common values, in which such values permit social expectations and collective understandings of the good, beautiful and constructive. 

Note: “such values permit social expectations and collective understandings”. Values are not a code of conduct. In short, values what we ‘care about’ – what we expect and understand. A code of conduct articulates the actions to be taken when we ‘care for’ other people. Here I don’t just mean caring for a person who is dependent because of a disability. I mean caring for people in general.

It is interesting how the word ‘care’ has become both inherent in how we feel and remote in how we think. There’s a distinction between the personal and the social dimensions. We ‘care for’ on a personal level and we ‘care about’ on a social level. We can do both, but so many in the human services don’t progress beyond ‘caring about’.

This is in our nature. It’s not a flaw, but it is an impediment when it comes to translating expectations and understandings into caring work that delivers positive outcomes to people who need our help. We need to understand why this happens.

Our culture has evolved over the past 60 years or so to value inclusivity as an ideal. This is hugely important because it means that greater inclusivity as a reality continues to remain possible. 

But this idealism doesn’t flow into action. It remains in potential as part of our culture’s affirmation of its values. Most well-educated and well-paid people hold inclusive values. But they do not act as inclusively as they think and feel. 

There’s nothing remarkable about that. This applies to most of us as an inherent part of being human. We are never as good as we imagine we are. That’s just how our psychology works.

Below I engage in a reflection on what it means to ‘care for’ and why establishing our own sense of what ‘care’ really means can crystallize our thoughts on our values and our capacity for action. When we have this understanding, we can make better choices and what to believe and what to accept as okay.

The disparity becomes obvious

My introduction to disability was working in psychiatric hospitals in the 1970s. I had to bathe and feed young and older people with profound disabilities. I also change their diapers and wipe their backsides, sometimes after having to playfully wrestle more boisterous ones to the floor (they thought it was a great game). These were humbling experiences. I was later responsible for managing the design and delivery of services provided to residents of private accommodation services. This sometimes required getting to know the backgrounds and needs of over 30 people with mental illness and intellectual disabilities. 

This ‘hands on’ experience made me aware of a deep disparity between ‘caring about’ and ‘caring for’. These are two different forms of caring with very different consequences.

This situation is nowhere better demonstrated than in my experience of working with funded disability service ‘contract managers’. As a team leader I had responsibility for more complex matters involving NGO service providers. This responsibility came with the job and was not dependent on any related experience. 

As it happened, I had substantial experience in providing hands-on care, negotiating with disability service providers and resolving complex issues. I had come into my role by way of a restructure. The role was vacant and, because it was at my grade, I was assigned to it. 

I was perplexed to discover that the ‘contract managers’ had no previous connection with service providers of any kind and had zero exposure to people with disability. Apparently, no such experience was required. 

Contract management, when done properly, requires an understanding of the service area and insight into the service provider. What was being practiced here wasn’t contract management at all. It was contract administration. Or rather it was administration with some contract-related work included. 

You can’t contract manage without the necessary insight into the service and the service provider. My employer had a culture of contract administration because it did not recruit for the skills needed for contract management. It didn’t do this because nobody up the management ladder had any experience of service provision or service providers. Nobody thought it necessary.

But still a culture of ‘contract management’ prevailed because that is what people believed they were doing. Those who saw themselves as contract managers did so with pride. They were doing a good job supporting people with disabilities. They sincerely believed this. I have no criticism of them. They were genuinely nice and caring people. The fact that they weren’t doing what they thought they were doing doesn’t diminish that. 

Who does our value system primarily serve?

Until a few weeks ago I would have said, in response to this question, that it served the people we ‘care for’. But, in fact, that’s only a lesser part of the story. 

Frontline workers in the human services area are paid less than administrators even when those frontline workers perform work that is more demanding and requires higher skills. You have to get into highly credentialed ‘frontline’ workers before you see status and pay being equal to administrators. For example, a psychiatrist and an executive director may have a comparable social status. But a child protection worker with a degree will be paid less than an administrator with no degree. This is even though child protection is an immensely difficult and challenging role. 

Caring about people with disabilities is a great thing. There’s a lot of it about. We are a caring culture, genuinely so. As lead of a Disability ERG, I experienced the goodwill of my department’s 25,000+ staff. Because it was present and apparent I was able to make good things happen for my members. But that good will is a pool of potential that must be skillfully tapped. This is about converting ‘caring about’ into ‘caring for’. 

Goodwill organizes itself into a cultural expression which is self-reinforcing. But this is something that a good culture does inherently. It does not, however, transform that ‘caring about’ into ‘caring for’. The people who do that have a direct connection with the people who receive the service – and they are relatively fewer and also tend to be lower status. 

People with frontline ‘caring for’ expertise don’t often transition into administrative roles. This isn’t a flaw so much as a bias. Once the disparity in status is established lower status people can be thought to lack something necessary to be an effective higher status administrator. 

So, ‘caring about’ can become a high-status domination which looks down (consciously or unconsciously) on ‘caring for’ as less important. This can seem paradoxical, but legislation, policies, programs and the like are important from a certain perspective – they are the enabling instruments of public funding. They can be seen as more important too – more important than the ‘caring for’ work.

The issue here isn’t that ‘caring about’ isn’t important. Rather, that because this is a high-status thing, it is often seen as inherently superior to ‘caring for’. Indeed sometimes ‘caring for’ can be seen as a residual function after the administrative priorities are catered to. 

There is also a natural tension between ‘caring about’ and ‘caring for’. In status terms this is something akin to the master/servant relationship. The master needs the servant to do essential things. The servant needs the master so they can do those things. But the servant doesn’t need the master on their own account. 

We have a natural bias toward high status in a social context, so it’s something we need to be aware of, so that we don’t become trapped by it. Early on as Disability ERG lead, I met with ERG leads from other agencies. I was hoping to set up a network of Disability ERGs across the sector. This effort failed because I didn’t understand the strength of status disparities. Colleagues from other agencies with union backgrounds saw their ERG’s role and status through unionist eyes. They had no relationships with senior executives because their perspective was rooted in contestation. My approach was collaborative, and I didn’t have skills to resolve the disparity. 

An effective Disability Inclusion change agent stands between ‘caring about’ and ‘caring for’. This is a high skill role of change leadership and persuasion. It is the future of DEI. 

Why does any of this matter?

One of the chief reasons that Disability Inclusion is so hard is that we don’t understand it to be an aspiration that we must evolve toward. We imagine that, in effect, ‘caring about’ will transmute into ‘caring for’ by some form of moral magic. It won’t. Our psychology and our culture mean that it will remain an aspiration while we work on the evolution of both our individual awareness and our community.

In April 2019 the Australian Royal Commission into Violence, Abuse, Neglect and Exploitation of People with Disability (more commonly the Disability Royal Commission – or DRC) commenced. Its report was published in September 2023. It had 222 recommendations.

The DRC was thought necessary in a culture that espoused deep commitment to people with disabilities. Not only were federal and state funds committed across the nation to disability services, but the National Disability Insurance Scheme (NDIS) was generously funded and open to public claims from 2016. And yet, 3 years later the DRC was thought necessary.

Australia should have a proud and unenviable record on Disability Inclusion. The fact we have the NDIS and that we held the DRC are both testimony to deep social values. So, what went wrong- if anything?

The worrying reality, for me, is that across the country, in each state and territory, governments (and their bureaucracies) have prepared reports in response to the DRC report. The same ‘carers about’ have been asked to define how to do ‘caring for’ better. Is that going to work?

The limits of government caring

If we don’t understand what’s impeding the realization of our aspirations, we will continue to do what doesn’t work. That serves nobody’s interests other than some of the ‘carers about’who will have a forever reason to write reports that will be ignored (and most likely misdiagnose the problem anyway) and develop plans that nobody will follow.

I am not saying that good things are not being done, but its patchy and uneven and a lot of effort is being applied to no good effect. In NSW, for example, membership of the Disability Council, supposedly a community representative body, is determined by a government department. Of the current 12 members 8 have substantial government experience, 2 are leaders of disability related organizations, 1 is a senior academic, and 1 is what I’d characterize as a ‘frontline’ activist. All members identify as having a disability.

There’s a myth that people with disability are inherently ‘carers for’. This isn’t true. We also can also be disconnected ‘carers about’. The Council’s 2022-2024 plan is instructive reading. I like the paragraph under the heading Voice:

“The voice of people with disability is not heard sufficiently or given appropriate weight generally, particularly concerning service design and delivery, and in policy and program development. The Council is interested in ensuring processes for seeking input and feedback are genuine so that the concerns of people with disability are heard and acted on immediately, particularly regarding issues or complaints about service delivery.”

Note that “The Council is interested in ensuring” Here is the passive language of ‘caring about’, not the active language of ‘caring for’ – The Council will ensure. Not only that, being interested in something expresses only a vague intellectual concern. But its worth noting that the chances that the Council members actually wrote this plan are very low. It is far more probable it was written by a bureaucrat with no disability.

Plans like this make it harder for things to happen because it’s not really a plan to do anything – only to think about doing something, only appearing care. If it sounds good, it gives the authors and the approvers a serotonin buzz – and job done. The symbolic act of ‘caring about’ has been performed and those involved feel good, satisfied and content. ‘Caring for’ isn’t their job. It’s enough to acknowledge that “The voice of people with disability is not heard…”

Note again that it’s not “The voices of people with disability are not heard…” Again, here is the passive voice articulating a fantasy – that people with disabilities have only a collective voice. They are not acknowledged as having individual needs. 

The people who write and endorse this guff do not ‘care for’ people with disabilities. This is the spirit that dominates how Disability Inclusion is seen and responded to. Being on the Council is high status. It’s not a foundation for action, though. 

Conclusion

It is important that when somebody says that they ‘care’ we don’t imagine they and we mean the same thing. If we do and their actions do not match our anticipation the resultant cognitive dissonance can cause distress. 

I have worked with some great DEI managers who have demonstrated deep and genuine commitment to ‘caring for’. I have also worked with senior executives whose commitment to ‘caring for’ was impressive and inspirational. But they are few. They have balanced their ‘caring about’ and ‘caring for’ roles deftly and without compromising either.

Those who are deep ‘carers for’, who can effectively drive Disability Inclusion, are exceptions. I don’t mean that they are exceptional as in being better or superior, but in the sense that they have a combination of personal attributes and experiences that are unusual. 

The tension between ‘caring about’ and ‘caring for’ isn’t an evil vs good contest. It is a tension between two states of energy – think water ice vs liquid water. The change agent’s function is to melt the ice and direct the resultant liquid to best effect. This takes skill and care.

I am talking with a friend who, after decades of direct hands-on care in their chosen human services fields, is experiencing intense psychological anguish. They have transitioned into service provision administration and with their background they’d hoped to have contributed to improved service delivery. But that hasn’t happened because more senior bureaucrats do not share their perspective or sense of urgent mission. The intent to improve services has become entangled in a web of abstract excuses for why service improvement is taking so long. Here is a painful clash between the controllers who ‘care about’, and my friend who brings their deep experience of, and commitment to, ‘caring for’ to what should be a shared mission – but isn’t.

In We Were Never Woke author Musa Al-Gharbi uses the sociological term ‘symbolic capitalism’ to describe well-educated and well-paid people who sincerely believe that their commitment to a value system is noble – and sufficient. This is an immensely useful term to help us remember that symbols do not morph in concrete actions, but they are still a vital part of our culture. We need symbols of caring because they enrich us, but we must never mistake them for the real thing.