Month: July 2025

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.

Introduction

We Have Never Been Woke: The Cultural Contradictions of a New Elite by sociologist Musa Al- Gharbi is a confronting read. The author introduced me the idea of symbolic capitalism. Here’s a summary of that idea by the author from the Columbia University website:

The early 20th century saw the rise of a new constellation of social and cultural elites whose wealth and status was tied to the production and manipulation of symbols and rhetoric, images and narratives, data and analysis, ideas and abstractions, drawing from Bourdieu, let us call them symbolic capitalists. From the outset, symbolic capitalists have defined themselves as champions of the desperate, vulnerable, marginalized and otherwise disadvantaged in society. (My bold)

Here’s a quote from the book: (I don’t know the page number – I have an audiobook and it starts around 1hour 56 mins in.)

Nonetheless it is not clear what, if any, good is actually being accomplished by this ever-expanding constellation of social justice sinecures beyond providing practitioners with gainful employment. Many of the programs associated with these DEI roles such as diversity training are demonstrably ineffective with respect to their stated goals. (My bold)

This is a common assessment from critical observers of, and researchers into, DEI and ERGs. What does this all mean? 

This book converges several themes that I have been exploring recently into a disturbing argument – that there is no real intent to change the circumstances of people subject to discrimination and exclusion – just to perform as if there is. It sounds so darkly cynical it is difficult to credit it with any validity. But wait. The argument isn’t that there is a conscious callous intent to behave deceptively. Neither does the argument assert that everyone is so inclined. There’s a lot to unpack.

Why bother? On its face the book is competent sociological research. I think it is telling us something important and we do need to engage with what that is. What interests me is that the author’s argument is in sympathy with the essential themes of my own research. So, I want to explore what the implications of the argument are in the context of that inquiry.

What do we think we know?

There are several propositions I want to assert, based on my own direct experience and research (including this book). They are:

• Disability Inclusion is hard to do. (my direct experience)
• DEI and ERG activity frequently fails to deliver the outcomes that are intended and desired. (multiple credible researchers)
• DEI practitioners and ERG leads often lack contemporary knowledge of relevant current research, and resist acquiring it. (my direct experience)
• Disability Inclusion professionals seem to lose passion for getting outcomes for people with disability. (other people writing on the field eg Alberto Vásquez Encalada)
• ERG leads are reluctant to develop a skill set that makes them effective. It takes commitment and effort. (my direct experience)
• Senior organizational leaders seem to have no interest in ensuring their DEI teams and their ERGs are capable of delivering desired outcomes. (my direct experience)
• Organizations, DEI teams and ERG leads are not really about addressing the needs of their ‘diversity groups’, just appearing to care. (the book)

These issues aren’t confined to DEI but embrace the spectrum of social justice and human services concerns, including the welfare of indigenous peoples and those dependent on social housing and mental health services.

What’s the difference between being sympathetic and actually doing something?

I have been involved in human services nearly the whole of my working life and I must say that at least 60% of people in that field have been inept, often incompetent and, sadly, also corrupt and cruel.

So, Al-Gharbi’s observations are not startling to me. I can see why his idea about symbolic capitalism is attractive – get the job and perform as if you care. Why else would failure to succeed be so routine?

Yes, the job is incredibly difficult. I have detailed why I think this is so in this blog. I remind readers that my quest is to answer the question, “Why is Disability Inclusion so hard?”

It is inherently hard because it is about changing human behaviour. It takes knowledge, skill and determination to succeed – and a decent amount of good fortune too. Consequently, the difference between performing caring about outcomes and actually delivering them comes down to a willingness to acquire the knowledge and skills needed, and then act with determination. Al-Gharbi asserts that this is absent in so many practitioners. They will perform caring but never transition into the commitment needed to deliver real outcomes.

This is the thing about symbolic capitalism. It is self-interested. Performance of the symbolic acts affirms one as a member of a critical in-group. Make them believe you care so that the in-group is protected from accusations of not caring. That is, not caring enough about the in-group, not the putative recipients of services.

And here’s the paradox. By attempting to deliver real results you risk exposing your erstwhile in-group to the hazard of having to actually do the hard work of making good things happen. That isn’t the purpose of DEI, really. This is why Al-Gharbi says this is a symbolic economy. The trade is in symbols, not actual social justice.

It is critical to understand that there’s nothing aberrant about this. It’s not morally okay, of course. But it’s just not outside human nature. We need to be vigilant that such a risk exists and take steps to reduce it and preferably eliminate it. However, this brings us into the vexed issue of accountability when it is controlled by organisational leadership. It adds a challenging level of difficulty to the effective delivery of Disability Inclusion.

There is, I believe, a no more compelling argument for taking a professional approach to Disability Inclusion, and certainly when running an ERG.

Care about vs care for

The idea that people will say they care to get a job shouldn’t be at all remarkable, especially if we understand that acting as being caring is a requirement for membership of a community of decently paid folks. It’s a form of what used to be called ‘respectability’. You affirmed commitment to socially acceptable and progressive values. Whether you actually lived them was less important so long as you did not violate them flagrantly in public – and certainly not as a representative of an organisation in a manner that could lead to questions being asked.

We all know hypocrites – people who say high things and do low things. That includes people who take wages for roles that are supposed to deliver benefits to those in need of assistance and aid but do not deliver. The litany of failure and ineffectuality in DEI is well attested. The reason? The job is just too hard? Perform an analysis, figure out what’s so hard, provide developmental support to existing staff, or employ those who are more capable. It isn’t rocket surgery. And yet, after several decades and an abundance of research, failure is still the most common outcome. Why is this?

DEI practitioners and ERG leads still resist upgrading their knowledge and skills. Few actually make the effort to assess their own performances – Are we succeeding? Why not? How can we do better? Why bother if you are being paid AUD$120K a year and nobody is on your case, why raise a sweat if you really don’t care for the people relying on your work?

I think people do genuinely care. But they care about. They don’t care for. They don’t take care of. This isn’t sophistry or pedantry. Care, here, is a verb – a doing word. But it can end at a feeling of the sentiment only, and not progress to effective action that will deliver a beneficial outcome for a person. There’s a lot of this about.

If I sound cranky here it is because I am. As an ERG lead, I gave three and a quarter years to getting outcomes for my members, and I did okay – for a beginner and an amateur. It was very hard work. I had a lot to learn. Since June 2021 I have had the time to commit to researching why Disability Inclusion is so hard. There are a lot of reasons, but none so insurmountable that an honest effort wouldn’t yield good outcomes. I proved this myself.

It’s hard if you want to get results that make a real difference to the people you care about – translating that care about into care for. It isn’t hard if you are content to fail because, despite your ‘best’ efforts, other people aren’t doing their bit – resisting your inducements to be more inclusive and not caring enough. It isn’t hard if you hand off responsibility to make a real impact to other people on the grounds that they should do better to meet their moral obligations. You have informed them, and the rest is up to them? What else can you do? If they fail to act that’s their issue, not yours. 

No! You can find a way to be more effective – to care for, or take care of, the people you care about.

On the Disability Debrief website Alberto Vásquez Encalada wrote an essay called We Wanted to Change the World in which he lamented how Disability Inclusion activists, when they became professionals, ceased to be effective. There’s a snare to earning an income from a passion to serve and it can become a conflict of interest. Activism can conflict with an employer’s culture and become a risk to the benefits of having paid employment and becoming a member of a fortunate minority. That’s a universal hazard which is simply worse when your passion is effective service. Stay committed to service or preserve your income stream?

Think of a person at risk of transitioning from a role committed to service to membership of the symbolic economy committed only to the performance of giving a damn. It can be soul sickening, especially if the transition has been made with no awareness of the reality of the culture entered.

What can you do when your critical source of income corrupts your values, and you cannot walk away? It is far better when you don’t have values to be corrupted, and you can take your wages with no qualms.

We are all familiar with the performance of value assertions not backed up by any meaningful action. Senior leaders soothe us with nice sounding words, affirm their commitment to values and sometimes promise action – and then nothing happens. Did they (1) get distracted? (2) forget? (3) or were they just bullshitting us? Staff in organisations reliably select option 3 on experience.

The sentiment is authentic because that’s as far as it is meant to go. Its not meant to be literal and real – as in actually happening. This is an important insight because it explains routine failure. It is the intended outcome. To think otherwise is to impugn the competence of people who otherwise successfully run large complex organisations. Give them due credit and allow that failure is intended.

Why? They don’t really care. They are aware that social justice is a theme that they should appear to care about, so that is what they do. Hiring a DEI team is essentially about perception management. Everyone (well almost) is happy. Senior leadership is happy because it is managing perception. The DEI team is happy because the jobs are high status and well enough paid.

And the intended beneficiaries? Well, you know, Disability Inclusion is just so damned hard, and we are doing our very best to help you.

Conclusion

Symbolic capitalism is only part of the complex psychology of people involved in Disability Inclusion. It doesn’t apply to everyone who is a practitioner and it’s not the only explanation for inaction or failure. 

Disability Inclusion is hard because we humans are complex. Its goals are morally good, but also aspirational. They are achieved as part of a shared evolution that depends on those who are practitioners being genuinely committed to getting results for those in need. That commitment includes extra effort to learn insights and develop skills. If you, as a practitioner, are not prepared to put in that effort ask yourself whether you are a really a symbolic performer – a carer about. This is no less sincere in protestations of concern. It is just that action does not go beyond performance of that concern and into a focus on delivering genuine benefits to those in need of assistance. 

We Were Never Woke is a timely and compelling argument that merits confronting. It addresses a problem that I think permeates the wide field of human services. It is present in government agencies and NGOs. It is not the whole answer as to why Disability Inclusion is so hard, but it’s a good chunk of it.

Footnote: I sent this post as a draft to a friend and former colleague. Their response was (in part): “Yes, totally relatable and yes truly soul tearing, to know this to be the hard truth …You have captured the harsh reality of (name of employer).” 

Introduction

This is a response to Alberto Vásquez Encalada’s 11 June 2025 essay We Wanted to Change the World: The risks professionalisation poses to an authentic disability movement in Disability Debrief. This is a great site and I encourage all readers to check it out.

During my first visit to Disability Debrief my eyes fell on Alberto’s essay with an instant recognition of the problem he had identified. But my concern has been the opposite – the risks a lack of professionalism poses. Reading through Alberto’s essay I started to see a convergence – a concern for inertia that seems to be engulfing our respective areas of interest.

I have been involved in thinking through how to make the Disability ERG I was a member of slough off the malaise of ineffectuality it had become trapped in. It started off in July 2010 as a great idea initiated by our departmental CEO. We had the responsibility of delivering services to people with disabilities in New South Wales, but staff with disabilities had been ignored.

Quite suddenly there was a burst of interest, backed by very generous support and then it all faded away. I became the ERG lead in November 2016. The department was being restructured, membership had dropped significantly, and the remaining members were frustrated and dispirited.  Why? Our initial struggle was to get on the agenda. We made that happen. But now we were competing for attention and resources like every one else. This was, in a sense, equity. What we wanted was priority. Staff members with disabilities were still being denied access, equity and inclusion.

In May 2018 I attended the Australian Network on Disability’s Annual National Conference in Sydney. The keynote speaker was Kate Nash, founder and CEO of PurpleSpace. The next day she ran a workshop on Networkology. I took two things away from that experience. The first was that the struggle for Disability Inclusion is always on. It wasn’t 4 meetings a year with some consultations in between. The second was that there was a glimmer of a method, or science behind running an ERG.

I stepped down from ERG leadership after 3 years and 3 months. We had achieved a lot. We generated a momentum for change that was so effective the department’s executive leadership committed to funding my successor in a fulltime role.

I quit full-time paid work in June 2021. This allowed me to focus more effort on answering a question that had been gnawing at me since early 2017 – why was Disability Inclusion so hard?

Alberto’s essay triggered an exciting insight – there is a natural tendency toward inertia and he and I were looking at the same thing from different sides. Below I want to reflect on this.

What is professionalism?

This is a vital question in relation to Disability Inclusion. I have worked in the human services sector for most of my working life. Some might say I am a professional bureaucrat who has a functional understanding of human services fields – from a bureaucratic perspective. My success as a Disability ERG lead was more down to bureaucratic expertise than my understanding of Disability Inclusion. It was only after I had access to the time to engage in intensive research that I came to understand that there’s a deep body of knowledge available to throw light on Disability Inclusion practice. But it’s not presently organised in a useful way.

I have had engagement with other Disability ERG leads who seemed to me to have become accustomed to failure. They lacked the expertise to tweak their operating environment. They were neither professional bureaucrats nor Disability Inclusion professionals. Similarly, I have encountered DEI practitioners who are very professional bureaucrats but whose knowledge of DEI, while functional, doesn’t extend to having an informed view of the psychology of inclusion.

The idea that one might be a Disability Inclusion practitioner with professional level competencies in related areas of psychology was completely novel to me. But after several years of intensive reading in organisational psychology, evolutionary psychology, cognitive science and leadership and management theory it became evident that this was not only possible but also necessary.

Most professional bureaucrats have a ‘functional’ theory of human behaviour. But how deep and informed that is depends on individual backgrounds and education. Bureaucrats in human services organisations need functional applied knowledge of psychology covering their organisation and whatever field of human services they are in.

This is where problems start. We all have our theories about human behaviour, and these effectively define the limits of our ability to engage, enthuse and persuade. A common assumption is that those we cannot influence have moral or intellectual flaws – because our position is self-evidently reasonable and moral.

When does our responsibility to be as competently professional as we can be end? Becoming aware of and applying current insights from psychology, cognitive science and neuroscience is demanding and time consuming. And this is very much to Alberto’s point. Professionals who have expended their innate capacity to influence have a conflict of interest. They have lives to be enjoyed because they have paid roles, but there is also the chance of very demanding further professional development to help them shift into a higher level of effective influence. They may not, however, see this. Or, if they do, they may find reasons to exempt themselves from an obligation to upgrade their knowledge and skills.

There is, I have noticed, an enticing temptation to elect to believe that one’s cause is impeded by the failings of others. Hence noble struggle and heroic failure become an insidious background discourse. That justifies ineffectual performance and retention of a job, income and professional status. I am by no means saying this applies to all, just in areas I am aware of.

Where to from here?

I can’t speak for elsewhere but in Australia the struggle for equity, rights and inclusion began in earnest in the latter part of the 1960s. In large part the moral battles were won and from the mid 1980s those victories were enshrined in legislation. In New South Wales the Disability Inclusion Act came into force in 2014. We have moral victories and law on our side, so all good? No. What we have is permission to persuade only.

Organisations might be subject to legislation and policy requirements to implement Disability Inclusion requirements but gaining the compliance of free individuals is another matter entirely. We are free to persuade, not to coerce. And relying on moral arguments isn’t sufficient or effective.

There is a vast difference between the energies that drive moral demands and those that persuade people to change their behaviour. We are moving into an area of high skill.

Influencing people to change their beliefs, attitudes and behaviours is a profoundly difficult thing to do without skill. A massive amount of intellectual effort has been applied to develop the art of persuasion and there are now many resources – but not packaged as ways of making Disability Inclusion more effective.

We have been getting it wrong routinely. One of my favourite resources – the Neuroleadership Institute (NLI) – whose motto is ‘change in weeks, not years’ recently admitted that it has taken around a decade to finally get a sound understanding of bias.

I agree with Alberto. We do need a revival of energy. But not a return to days of asserting moral rights. Rather we need a passion to acquire knowledge and insight that makes us better at influencing. This will put people currently in professional roles on notice of course, and some will not like that.

However, what must first happen is that current Disability Inclusion advocates must competently persuade key leaders of the necessity of this revival of energy. This is no easy task. Maybe a bit of raw moral energy might be necessary, so long as it is accompanied by competent persuasion and argument. 

Why the resistance?

Humans crave inclusion at a very fundamental level. Neuroscience has shown that exclusion triggers responses related to physical pain. But we also include and exclude selectively. We have ingrained biases which are a natural part of our behaviour. We prefer people like us. We favour our in-group members, and we exclude others – not out of malice but because we can handle only so many we can care about.

There are people who may be exceptions to this general rule, who may be deeply humanitarian and universalist. These people may be disproportionately represented in the community of Disability Inclusion advocates and activists. They need to understand that other people are not like them, and even the caring ones still have limits on their capacity to be inclusive.

We are becoming more inclusive. This is a pragmatic evolution as our communities become more diverse and as habits of separation and exclusion break down. But then we are also seeing new triggers to excite exclusion arising.

In essence, resistance is natural. Resistance to change is deeply ingrained in our psychology, and we are not adapting quickly to our changing environments. This is a universal reality and not just happening in the Disability Inclusion space. I found an insight in a text on cognitive science useful – we are operating with stone-age minds in a space-age world.

Is it the environment?

Recently friends and former colleagues have been expressing deep frustration about their workplaces. They are in roles that should be delivering valuable services to vulnerable members of our community. One has been agonizing over how their manager and their directors seem to be more about creating a chummy atmosphere in the business unit rather than focusing on delivering the services. Another in a leadership role wrote, “I love the actual work we get to do. It’s just less than 20% of the job. The rest is bullshit busy work. That’s the reality of the workplace right now. Breaking people’s backs with bullshit.”

Another is distressed by their inability to help people they have on their case list because it’s overwhelming in size and the related services that they rely on aren’t functioning well. 

I am hearing a common theme from podcasts as well. There is immense pressure being placed on leaders, to the extent that some vacancies are hard to fill. In fact, among my friends there’s a common trend to either move out of leadership roles, avoid them or regret being in them.

This suggests to me that there’s another crisis in professionalism – among senior organizational leaders who are unaware of the impediments impacting staff members who are committed to delivering caring and inclusive services.

The potential for effective Disability Inclusion is significantly diminished if the operating environment isn’t conducive to doing good work. Bureaucratic demands can clog a service delivery system with unproductive distractions. Distracted professionals can find unproductive work satisfying and unchallenging. Those closer to the frontline who lack the skills to achieve enduring outcomes can find comfort in heroic failure. And those committed to, and well capable of, effective work may find themselves under constant pressure of time demands to perform pointless tasks and reduced resources.

There’s a strong sense that administration has become its own reason for being and that effective service delivery has become a fortunate but scarce by-product. It’s a complex and critical state that we are in and it will take determined effort to escape from it. I think we need a radical rethink about goals, methods and the knowledge and skills that are needed to achieve the original intentions of Disability Inclusion. This will necessitate a revival of the passion to bring real positive changes and benefits to people with disabilities.

Conclusion

Alberto has reminded me that passion is needed. I needed that reminder. But the passion of struggle for moral rights must be replaced with passion for the skilled driving of positive change. The disability rights movement has matured over the past 60 years and now we have ‘grown up’ responsibilities.

There’s a lot of new insights about human behaviour that have been developed over those 60 years, giving us new skills and new tools that we now need to acquire.

My focus has been public sector Disability ERGs in NSW, so I don’t presume to speak for the whole community of disability advocates and activists. But to the extent that I am aware of what is happening elsewhere there does seem to be a common theme that impacts so many organisations, regardless of their business area. That theme is the need for greater self-awareness that is best described in NLI’s idea of GPA – Growth mindset, Psychological safety and Accountability. 

Alberto sees that professionalism has become a concern because it has created comfort zones and conflicts of interests. I see that a lack of professionalism, in another sense, has also created comfort zones and conflicts of interests. This time a lack of skill leads to failure and the self-defensive belief that this is down to lacks in other people.

I mentioned above that exposure to PurpleSpace transformed my practice as a Disability Inclusion practitioner. It describes itself as The world’s only professional development hub for disability network leaders. This seems to me to be the next stage for this kind of Disability Inclusion practice. Being a volunteer or an amateur must not lead to the assumption of an absence of professionalism. And yet it does – for ERG leads and for organisational leaders. 

This is why I like NLI’s notion of GPA – because it’s exactly what is needed in any organisational setting. Accountability, in particular, is a massive problem – because its seen as primarily punitive rather than developmental. How can we grow our capacity to influence with passion when a lack of accountability impedes our efforts? What can we do to overcome that issue?

Changing the world requires growing our knowledge and skills to a professional level while retaining a passion for getting results.

Introduction

A friend sent me links to a set of 4 essays on neurodiversity from the Mad in Americawebsite. I have put the links at the end. The authors are John Cromby (Professor of Psychology) and Lucy Johnstone (Clinical Psychologist) and the essays were written in July and August 2024.

The essays are a thorough and thoughtful survey of the complexities, cautions and unintended consequences arising from the growth in interest in neurodiversity. They are:

• Part 1: Neurodiversity–What Exactly Does It Mean?
• Part 2: Are We All Neurodivergent Nowadays?
• Part 3: Neuro-Authenticity, Neuro-Identities, and the Neuro-Industry
• Part 4: Neurodiversity: New Paradigm, or Trojan Horse?

Reflection

The last paragraph of the first essay articulates a sentiment that I share: 

Perhaps we need a better, less contradictory way of acknowledging and accepting our human struggles and skills, similarities and differences. And perhaps we need to think more deeply about why it is so hard to do this. Meanwhile, it seems that much of this confusion could be avoided if we dropped the ‘neuro’ prefix. We are all diverse. We want to live in a society that

accepts all of us. Let us celebrate diversity, while being appropriately cautious about neurodiversity as a way of achieving this.

Conclusion

The topic of neurodiversity is important to all of us. The term was developed by an Australian sociologist Judy Singer in 1997. She proposed it as a catalyst, as an “umbrella term”, in aid of a political movement for human rights. Now, 28 years later, it’s time to reflect, take stock and think about whether the term has arrived at its ‘best before date’.

Do, please, read the essays.

Part 1: Neurodiversity–What Exactly Does It Mean?
   https://www.madinamerica.com/2024/07/part-1-neurodiversity/

Part 2: Are We All Neurodivergent Nowadays?
   https://www.madinamerica.com/2024/07/part-2-are-we-all-neurodivergent-nowadays/

Part 3: Neuro-Authenticity, Neuro-Identities, and the Neuro-Industry
   https://www.madinamerica.com/2024/07/part-3-neuro-authenticity-neuro-identities-and-the-neuro-industry/

Part 4: Neurodiversity: New Paradigm, or Trojan Horse?
   https://www.madinamerica.com/2024/08/part-4-neurodiversity-new-paradigm-or-trojan-horse/