Category: Uncategorized

Introduction

A former colleague responded to my last post, saying “It’s an interesting perspective… Training doesn’t give us the ‘activating empathy’ bit that we have learned is so important.”

That left me wondering about how we might go about ‘activating empathy’ in a deliberate way on a personal level. As a Disability Inclusion advocate, I could say I am motivated by a sense of justice. I know what it feels like to be excluded because of a disability. But that’s not my activating force. In a way, my ‘life lesson’ is about learning to be more effectively empathic.

People who are responsive to Disability Inclusion efforts are empathic in general and Disability Inclusion only shapes their empathic response in that context.

Empathy is something we all have the potential to express in a strong way, unless we have been traumatised. But its not universal. It is shaped by experience. We may be confident in expressing it, or fear doing so. We may express it gently or roughly, strongly or tepidly.

Where does it come from?

Empathy is built into our biological core. Our brain has mirror neurons that let us ‘mirror’ another person’s behaviour, gesture and posture. We might be so ‘into’ the other person that we don’t notice we are matching/mirroring them. But others will.

Our primate origins have given us instincts to feel belonging with and caring for others who are ‘one of us’ – family, tribe, gang, team, squad, group, community and so on. But, because these are biological instincts, they are not endlessly scalable beyond a certain number of people and the nature of our connection with them. There’s a ‘cut off’ point when instincts give out and ideals take over.

This is when humanistic or humanitarian principles and ideals replace our instinct. We also have instincts to exclude and be unempathic. They came into play when our ancestors found it necessary to compete for resources – either raiding to obtain or defending to retain. Competition is an instinct we need to manage through intentional acts of self-control.

This is the environment we live in. We include and exclude according to our needs and wants. We live within multiple ‘one of us’ associations (in-groups) and in sometimes uncomfortable proximity to multiple ‘not one of us’ (out-groups) relations. 

We can be indifferent or hostile toward out-groups or their members. This can be because of direct experience, history, tradition or belief. Such emotions may need managing in diverse workplaces and communities. We may struggle to be empathic. Taking that ‘higher path’ isn’t necessarily an easy thing to do.

Mapping our connections

It can be instructive to create a mental map of one’s in-group/out-group associations. With my former employer I was a member of a small work team within a directorate which was part of a business area which was part of a division which was part of a department. But my strong sense of ‘one of us’ stopped at work team level because of the culture created by senior management. Managers and above have their own sense of ‘one of us’. Many see a management/worker divide and that can be even stronger among executive leaders.  

My personal ‘one of us’ connections include family and friends, allies in the Disability Inclusion cause, other people with disabilities, members of my geographic community, people who share my interests and beliefs and so on. This is, with all of us, a large group with senses of connection from deep and immediate to superficial and general. 

When you think about these connections for any time you will see that your capacity for empathy is highly selective and variable in its intensity. It is something we can be aware of and make choices about. We can choose to be more empathic.

Being ‘one of us’ can be about powerlessness

Being ‘one of us’ can be about looks, beliefs, interests, origins, gender, sexuality or status. Or it can be about shared experience, including disability. Or it can be because we are also all human beings.

All this matters because efforts at stimulating Disability Inclusion may have to compete with in-group/out-group reflexes. Hence, in appealing to a natural sense of empathy the motivation might be about activating a sense of ‘one of us’ in a work context or appealing to an abstract ideal of inclusion. The ideal might be an undeveloped notion for some and hence require greater cognitive effort.

There is good evidence that people become less empathic as they climb organisational power ladders, so appealing to a ‘one of us’ sense of belonging may not be effective. A gentle reminder about ideals and values might be more effective.

My time as a Disability ERG lead had a lot of focus on cultural change to activate greater ‘one of us’ empathy. But I also understood that stimulating idealism was important in the context of inclusion in general. I have come to understand that these are two different approaches that we shouldn’t confuse.

Sometimes we are united by lower status and relative powerlessness. This is often the case in hierarchical organizations where status and rank are coveted by people less inclined to be empathic. It’s not a great foundation for empathy and should never be exploited in an explicit way. But understanding what triggers empathy is important, as is fostering it in the highest way.

The reality is that Disability Inclusion isn’t usually something one seeks from a position of strength – unless it is accepted as a moral duty by an organisation or community as a shared responsibility. For me, the goal has been to get to that strength position – where empathy is the default response.

The critical value of insight

We can’t train the activation of empathy, but we can stimulate it provided we ‘educate’ for insight rather than information. Back in 2011 I completed a six-month program in applied management, for which, apparently, my employer paid $10,000. The program was solid and thorough, but I was always puzzled why I had no strong recall of the content, even though I applied myself diligently. 

It was only last year (2024) that the penny dropped. I had been listening to a Your Brain at Work podcast from the Neuroleadership Institute when I heard about the difference between training for insight rather than information. If you read, listen or watch for insight rather than information critical ideas can trigger greater learning. But it’s better that learning opportunities are primarily designed to trigger insight. Mostly they are not.

Some people will not be strongly motivated to be more empathic. There’s no point in pressuring them because that will likely precipitate an adverse reaction. But you might be able help them gain insight into why they do not have a strong motive. They may resist. That’s okay. We don’t need to be judgy. However, they might appreciate understanding why other people are giving them a hard time.

Empathy can be hard to do

Expressing empathy is complex and personal. There was some research done a few years back on how corporate executives in the USA were responding to Disability Inclusion efforts. Some executives expressed interest but were not confident in engaging with staff with disabilities because they feared an adverse reaction if they came across as ignorant or insufficiently sensitive. That could have been an insightful moment for a lot of folks, but I heard nothing after. Maybe it was for some.

This is why I am such a fan of PurpleSpace. It’s the only group I know that is dedicated to Disability Inclusion by creating opportunities for insight to be triggered and empathy increased.

Conclusion

Our workplaces are novel communities, sometimes of great diversity. Our instinct to be inclusive creates a background of goodwill which, nevertheless, can be overtaxed by cognitive demands and result only in a positive sentiment.

We naturally imagine we are better than others find us. Positive sentiment can seem to be sufficient. But, when inclusive action is needed, we require a motive force. Here we must allow our workplace communities are stages for evolving ideas and values and consider two motives:

1. Expand the sense of ‘one of us’ through positive culture change via communicating insights about diversity attributes and experiences that reinforce or activate a sense of ‘one of us’.
2. Encourage engagement with ideals and values that champion the idea that ‘all of us’ is ‘one of us’. But while this is an adaptive pressure on our evolving diverse community it risks being distorted by dogmas and unsubtle moral pressure. It needs a light and patient touch guided by triggering insights rather than asserting moral arguments.

We realistically should be employing both motive forces, but not through formal processes like ‘training’. Formality isn’t a friend to empathy. What works better are managed engagements that foster openness and authenticity – conversations among peers and allies.

A weakness of the desire for Disability Inclusion is that we aren’t motivated to understand how we ‘talk’ inclusion while often we ‘walk’ exclusion. We can make inclusion selective and conditional in our own actions while seeking universal and unconditional inclusion from those we don’t see as ‘one of us’. We need a countering insight to stop this contradiction.

Insight begins with advocates being sufficiently self-aware of their own behaviour. What behaviour led an executive to be averse to engaging with staff with disability? How can that concern be addressed by a Disability Inclusion advocate? Can we have empathy for the unconfident executive? To be effective we must.

This is a hazard for a lot of efforts at inclusion. We assume that empathy must flow only toward those who feel excluded. But if those who are doing the excluding do so inadvertently, we must reach out to them. Even those who exclude intentionally may have no insight into why they do so, or the impact of their behaviour. Empathy is a relationship, not an attitude.

This is an argument for greater cognitive effort by Disability Inclusion advocates so that they are capable of performances that trigger insights rather than convey moral pressure and political argument.

Empathy is personal, direct and visceral, not abstract and rationally remote. It says, “I care for you.”

Introduction

When I was a Disability ERG lead, I developed a 15-person team I called the Guidance and Action Team (GAT). The GAT included members who were blind, deaf, autistic, had MS, had a spinal injury but were ambulatory, a wheelchair user, had a diagnosed mental illness, and more. All up there were 10 distinct disability types. 

I had been involved in disability related fields going back decades and even so, the members of the GAT were constant sources of insight. And my fulltime job at the time was almost exclusively disability related. 

In December 2018, I arranged for an experiment with my division’s executive leadership. 

I had four GAT volunteers sit with four managers and engage in a conversation about disability. The exercise was free form. After an initial period of awkwardness, the conversation developed fully for over an hour. 

Afterwards I asked the managers to provide some feedback on their experience. The most senior summed things up by saying that they’d just recently been to a day-long Disability Awareness Course run by the Public Service Commission but the conversation they’d just had gave them far more value and insight. 

In February 2019 I presented before the department’s executive leadership board with six GAT members chosen for their stories of awful treatment as a staff member with a disability. The experience was transformational for the board members and the GAT members. The board members became aware of what was happening to staff under their responsibility and the GAT members felt heard and acknowledged for the first time. This experience transformed the way the Disability ERG operated and led to an enduring momentum of positive change. 

Disability is a huge and complex field. Disability Awareness Training (DAT) is, in my view, a fiction. But some people make money from providing it and other people say it’s a good thing – so my point of view isn’t popular with everyone. 

DAT doesn’t work because it can’t work. It is the wrong solution to a badly analyzed problem. 

So, what is the problem?

There is a need for greater awareness of disability, but that need is not simple or uniform. Frontline service providers have a set of needs, as do policy developers, architects, designers, event coordinators – the list can go on. 

There is a balance also between service providers and managers being aware of the needs of people with disabilities and, so far as possible people with disabilities being aware of the capacity of service providers and managers to respond to their needs -which can vary for a variety of reasons. It is a 2-way matter. 

For me the idea of ‘training’ borders on offensive in the context of Disability Awareness. Allowing that repeated exposure to any set of experiences or ideas will increase the likelihood of something being learned, calling it ‘training’ as opposed to ‘education’ marks attitudes toward how something can be learned. 

For me training builds reflexes or habits. Education builds awareness. There is a good argument that the two, combined, can be highly effective. But both require purpose-driven and repeated engagement. One-off experiences, especially any form of training, do not deliver lasting benefits.

What is missing from both is any thought of activating empathy and compassion. This is very important in the context of Disability Awareness because people with disability may be experiencing exclusion and sometimes actual abuse. Empathy and compassion create motivation for engagement and action.

Stimulating empathy and compassion often concerns developing confidence in expressing concern and responding to need. You can’t train for this – but you can coach. This is where group conversations can be invaluable.

Coaching for Disability Awareness requires a genuine desire to develop greater awareness and a willingness to commit the effort to achieving needed changes in beliefs, attitudes and behaviors. Coaching can be about general or specific purposes and can be one-to-one, or group based. 

We have wide goodwill to be responsive to the needs of people with disabilities to ensure their inclusion in a range of activities in the community or workplace. But training people to be aware of disabilities in a general sense isn’t a useful response if we expect them to act in a desired way because of that training. Usually, such training is like most training – brief and with no organized follow up. 

No new information, insight or capability will stick in our minds without repetition. Quite simply we learn through repetition – unless it is via trauma. 

What we must ask is what is the purpose of any training – what outcome do we want? Often the real, but unspoken, purpose is to meet a compliance requirement rather than genuinely trigger attitudinal and behavioural change. 

What we need to do is to create a culture of openness to individual needs and a preparedness to adapt and provide an adjustment or an accommodation as needed.  This could be helping people to feel comfortable in asking for an accommodation or an adjustment or asking them whether such might be desired. 

A person with disabilities cannot represent all or most people with disabilities.  No ‘trainer’ can do so either, regardless of their claims. 

Disability Awareness isn’t just a one-way street. The burden of awareness shouldn’t wholly fall on one side. People with disabilities aren’t innately self-aware or sensitive to people they are engaging with. They are not passive ‘victims’ who needs are ‘diagnosed’ and ‘treated’ but members of a community/workplace that has competing demands for limited resources.

Our cognitive limits

One of those limited resources is attention. Contemporary neuroscience makes it clear that we must dedicate a significant amount of cognitive effort to learn new things. In fact, from an evolutionary perspective, the need to increase cognitive effort generally reflects a sense of threat. 

We innately like to engage in low cognitive effort activities. This is why bias is a natural reflex – and not the evil it is often made out to be. We can’t eliminate bias, but we can become more self-aware and take responsibility for our behaviour. There are also very good methods for reducing the risk of bias in professional settings. 

Education/training is cognitively demanding. We undertake training or education with enthusiasm or reluctantly and this makes a difference to the effort we put in – and the results we get. 

It is well known that mandatory training often generates adverse reactions that often lead to outcomes contrary to the intent of the training. 

Compliance with training demands can generate what are called ‘tick box’ exercises. Participation isn’t motivated by a desire to learn but an intent to comply with a requirement. Given that training is mostly one-off and triggers no follow up, taking a compliance approach is usually successful in meeting a demand, but not changing beliefs, attitudes or behaviours. 

The absence of change is explained usually by the ‘problem’ being more difficult than anticipated or that the other person (with disability) wasn’t helpful or that there hasn’t been time/money to do anything. 

What can we usefully do?

We can ‘diagnose the problem’ accurately for starters. The problem with DAT is that it doesn’t/can’t work. The realistic solution is more complex – and hence costly in terms of addressing the need to do something.  This is a real problem because offering a low-cost solution to a complex problem will always be attractive. It is hard to move decision makers away from the attraction of a well-marketed ‘solution’ to a problem they are under pressure to address. 

The people part

People with disabilities are regular people who have some form of impairment which may necessitate a form of accommodation or adjustment in some settings. They may be experiencing discomfort, pain, or psychological distress – or not. 

They may not be very self-aware, defensive or even militant about their inclusion needs. This is a concern because extraverted people with visible disabilities can style themselves as disability advocates and create the illusion that they are representative of people with disability in general. They are not.

There is no magical insight conveyed by having a disability beyond direct personal experience.  There is an industry of very marketable people with disabilities representing that they can deliver effective training. They might be entertaining but it is unlikely that they ever conduct an effectiveness audit on their work. 

What they rarely, if ever, do is facilitate conversations (or relationships) between people with disabilities and the people who need to understand their needs. This is because these conversations must be ongoing in some form, and this isn’t an attractive option because the skillset is different and the role less attractive.

The environmental part

A disability might be expressed in a particular environment or setting and not in others.  An adjustment to a physical environment might require construction or moving furniture. A social environment might require adjustments to sound or lighting or the number and behaviour of people present. A temperature adjustment might be necessary. 

You don’t train anyone to be aware of the spectrum of options but educate about the need to ask whether anyone has a concern or create awareness of the right for a concern to be expressed. It is then possible to coach in confidence and style of communication.

The disability part

The range of disabilities is huge, as is the variety of expression. We can build a general understanding by taking broad categories – mobility, vision and hearing are the most common. Age-related disabilities in an area often ignored because ageing is seen as a separate category.

It is impossible to ‘train’ much beyond focusing on a specific disability type to a limited degree in a few sessions. And this is better done in conversations with people with that type of disability over time through mutually respectful conversation – as equals.

It is possible to educate about the scope and complexity of disabilities and help participants to identify their specific areas of knowledge needs. Then there is the opportunity to coach on how to refine the development of knowledge and insight.

The political part

There are some contemporary trends in disability politics worth being aware of. The Disability Pride movement expresses a strong assertive approach to ‘demanding’ inclusion rights are honoured. This may result in what can appear to be a needlessly militant attitude. 

There is also a trend toward self-diagnosis of neurodiverse conditions like ADHD and autism. This could lead to problematic interactions. 

The political dimension isn’t a major concern, but it helps to be aware of it because an adverse interaction with a person with a disability could trigger an anticipation that other people with disabilities will behave the same way. They won’t – but some may.

It is important to remember that people with disabilities aren’t inherently articulate, militant or insightful. They are regular people with some kind of impairment that might be an issue under some circumstances. Their disability isn’t ‘always on’ as an issue.

What are useful ways of thinking about Disability Awareness?

• Develop a general understanding of disability. 
• Understand the cognitive and motivational limits of developing awareness of disability and frame your need to know accordingly.
• Support a culture of sensitive communication – it’s about mutual understanding. 
• Create an intentional culture of inclusiveness in which people with disabilities feel safe in saying what they need.
• Develop a sensitive, honest and confident response to those needs.
• Create opportunities for shared and ongoing conversations of mutual positive regard. 

I am a huge fan of PurpleSpace – an organization dedicated to supporting employees with disabilities. They work with organisations, helping them to engage with staff with disabilities, but do not offer DAT in any form. Instead, they say “We believe that the only real way for employees and employers to build disability confidence is from the inside out…. It means helping employers to learn about building inclusive cultures directly from their own disabled colleagues.”

Here’s an excerpt from their brochure, Building Disability Confidence:

“We are all about ‘Networkology’ – the art and science of building great conversations through networks & resource groups to support inner confidence and drive cultural change.

Our clients told us that for too long they had over-invested in employee assist programmes, external training, occupational health providers, external consultants, membership trade organisations, segregated recruitment

campaigns, sponsorship of award and recognition schemes, benchmarking tools only to see no impact on the visibility of their own purple talent and disabled colleague engagement scores. (My bold)

So they come to us in order to re-align their spend, better invest in their internal ‘cultural change agents’ and make a step-change in the quality of internal conversations about building inclusive workplaces.”

It was the PurpleSpace CEO, Kate Nash who inspired me to transform how I led my department’s Disability ERG and turn it into a highly effective ‘cultural change agent’. What applies to organizations also applies to communities.

Conclusion

There is a general commitment to Disability Inclusion with goodwill on both sides.  It is important that awareness is a two-way flow and that the demand to be aware isn’t placed solely upon those providing services. 

People with disabilities aren’t necessarily passive recipients of services in their favour but members of a community or workforce which has limits and flaws as well as aspirations and ideals. Many people with disabilities can (and prefer to) articulate their needs and their hopes and expectations as a conversation rather than a recitation of demands.

There is a sense that people with disabilities have a prickly sense of entitlement about their rights. Maybe some do, but most are cool about having open conversations about what is genuinely doable. Ignorance and neglect aren’t the same as issues about intent, capability and capacity to meet a need. There may be a lingering sense of hurt for some – and trust or respect issues to address – but they can be worked through when there is evident goodwill.

We have a shared need to become more aware of the reality of living with a disability in our workplace or community so we can do our best to meet needs for accommodation or adjustment. 

When that need is expressed by an organization which expects to pay for meeting the need there is a willingness to accept ‘solutions’ that come at a cost that is affordable. 

There is a fundamental difference between solving a human problem and solving an organizational problem. This, understandably, isn’t going to be a high priority concern for decision makers whose priority is to comply with demands from on high. 

I am not saying there is any intentional or callous disregard for the human dimension – just that there is no personal sense of commitment. This is a fundamental problem with training in many settings. It is often about compliance with requirements, abstracting real people as elements of a problem – often to the extent that the person with disabilities is seen as ‘the problem’. What is lost in all this is the empathy and authenticity we need to keep our perspective on what the actual problem is.

When that happens, we craft a need for ‘training’ because people with disabilities have become a problem in general rather than people with specific needs which could be inquired about with sensitivity and respect – directly.

Developing Disability Awareness should be about fostering Disability Inclusion through person-centred engagement with the people who best know their needs. It’s about building relationships between decision makers and service providers and people with disability. There is mutual interest and there should be mutual trust and respect. There is no need for a representative ‘expert’ to train anybody.

Introduction

It is very easy to forget that living with disabilities in Australia or the USA or Europe grants us privileges that are not open to the many living where governments do not provide funding and community infrastructure doesn’t create accessible options to participate in community life. 

A few years ago (2023), I helped a friend with a few things while she was volunteering with YPK Bali. I wrote a blog post about YPK shortly after and republished it not so long ago. YPK seems to concentrate its vital work on children with disabilities to give them a fair go and a decent life.

Yesterday I got an email from YPK featuring the July edition of their newsletter, Insights. It provides an update on what’s been happening over the last 3 months. It was a humbling read.

Below I have taken some brief excerpts from the newsletter to convey the flavour of what YPK does on very limited funding and with a great spirit. Please, take the time to sample YPK’s great work, and then read the full newsletter.

Empowering Therapists, Supporting Families with PUM Netherlands

YPK Bali welcomed two professional trainers from PUM Netherlands, Karin and Lisette, for a 5-day physiotherapy training held from Monday to Friday, July 7–11, at YPK’s rehabilitation room. The training aimed to strengthen the therapists’ capacity in managing children with disabilities.

From Bamboo… Hope Grows

The process – In a modest room at home, a child takes careful steps between two bamboo poles. Beside them, a parent stands close, offering steady support. These bamboo bars are more than just wood, they are a symbol of love, trust creativity, and hope.

Pediatric Check-ups for Children with Disabilities

As part of YPK Bali’s integrated services for children with disabilities, comprehensive health check-ups were conducted for 50 child clients.

Success Stories

From Therapy to Radio Broadcaster

Before graduating from YPK, we provided Gekta with the opportunity to intern as a radio host at Denpasar Public Radio. Currently, Gekta has officially graduated and is now working as a professional radio broadcaster in Denpasar City. We are proud to be part of her incredible journey!
Keep shining, Gekta!

From Therapy to Life’s Stage

Giri used to come to YPK only for physical therapy. He was quiet, and it wasn’t clear what his interests or talents were. However, since joining YPK’s education program last year, a remarkable transformation has taken place. Giri now arrives at YPK full of enthusiasm. His confidence has grown, and he actively participates in various meaningful and joyful activities. One of his favorites is the Music class, a traditional African drum class taught in an inclusive setting. Through this class, Giri’s musical talent began to shine. He can follow the rhythm, express himself through drumming, and perform with his friends at events. YPK’s education program not only teaches academics, but also gives children like Giri the space to explore, socialise, and find joy in learning.

The Voices of Volunteers

Meet Vlad, Volunteer Yoga Instructor at YPK

With a gentle and inclusive approach, Vlad helps the children connect with their bodies, practice breathing, and find calm through simple movements. We truly appreciate Vlad’s dedication in creating a positive, supportive space for our children to grow and thrive.

Meet Samuel and Cynthia

Samuel and Cynthia are students from Nanyang Technological University (NTU), Singapore, currently interning with us at YPK. Over the past 1.5 months, they have been supporting the Education Unit and contributing in many meaningful ways.

Meet Mirah, Saras, and Vira

We are delighted to welcome Mirah, Saras, and Vira who are communication students from Universitas Pendidikan Nasional (Undiknas), Denpasar. They who have joined YPK for one semester through the Merdeka Belajar Kampus Merdeka (MBKM) program.

YPK Activities Update

Nutrition Seminar & Plant-Based Cooking Class for Parents of Children with Disabilities

YPK Bali recently held a Nutrition Seminar and Plant-Based Cooking Class, especially designed for parents of children with disabilities. The event featured dr. Arie Purwana, Sp.A, who shared valuable insights on the connection between nutrition, children’s emotions, and behaviour. During his session, parents learned how diet and nutritional intake can significantly influence a child’s emotional regulation and behavioural development.

Learning with Joy: A Sweet Journey to Cocoa Land Bali

Children from YPK Bali recently enjoyed an educational visit to Cocoa Land Bali, a chocolate-themed learning destination. During the trip, they discovered how chocolate is made from bean to bar, explored the different types of chocolate, and even got hands-on experience by molding their own chocolate creations.

Recharge, Reconnect, and Return with Purpose

In early July, all the YPK staff and volunteers took part in our annual staff outing a special moment to recharge, reconnect with nature, and spend quality time together. Surrounded by laughter and good food, we enjoyed fun games, shared meals, and built a stronger bond as a team.

Together, we build a more inclusive future, today, and always. 

Conclusion 

YPK reminds me that I am profoundly fortunate to have acquired my disabilities here. I contracted GBS in 2008 and was a respirator in an ICU within a few hours. I was there for 3 months. Without that speedy response my ability to breathe would have deteriorated rapidly and left me with a worse level of residual disability or death as my muscles ceased to work.

The motive for this blog is the search for answers to the question: “Why is Disability Inclusion so hard?” I don’t mean this to be a ‘first world problem” – an awful term – but it is where I live. The answers to this question lie in human psychology and human organisations – and these tend to be globally consistent.

I don’t want ever to forget that Disability Inclusion is way tougher for so many people in so many places. Being passively sympathetic isn’t enough. I started making a monthly donation via PayPal in 2023. I am about to double it. I may go further, but I am on limited income these days, so I will assess the situation. I don’t mind ‘hurting’ a bit more to support YPK.

YPK must engage in a relentless quest for funding to survive. Please, take the time to reflect on your good fortune to be living where you do, and commit to even a small monthly donation.

Introduction

In April 2008 I contracted Guillain-Barre syndrome (GBS) which put me in hospital for 10 months and was off work for a total of 18 months. I returned to work with a major mobility disability – my ankles did not work as a means of keeping me upright and able to walk. I also had impaired grip in both hands and radically reduced manual dexterity. Living with these disabilities is a major pain in the arse. There are so many things I can no longer do. 

I do not like the term ‘disabled person’. I prefer a ‘person with disabilities’. Living with disabilities is part of my identity and while the physical impact has been catastrophic in many ways (I now must pay for things I once could do – like gardening and home maintenance at considerable cost). I do not consider disability to be a dominant element of my identity.  It is only one of its many facets. My personhood is intact and functioning perfectly well.

I have recently been exploring the postmodern and social justice politics of disability theory and related identity claims. They are bewildering to me. I have had to engage with them because they are now part of the social landscape. 

I had ignored them previously because I was focused entirely on addressing the functional priorities of disability. Now I am aware of them I will return to ignoring them because I have no use for them. But I want to clear on why.

I returned to work in late September 2009 and had a rough time adapting. My colleagues were great. They were supportive and kind. My management wasn’t so much. I was a novel problem to them, and I wasn’t treated with any real insight. Of course not. Staff who have acquired major disabilities and return to work expecting to pick up where they left off are fortunately relatively uncommon. In my 33+ years in the public sector I knew of only a few people who returned to work with some level of disability following a MVA whilst on duty.

My lived experience of disability has, from the outset, been about functionality. I spent 7 months in a rehab ward learning to move my body in a coherent way again. This was followed by a continuation of rehab at home for over 6 months – 5-7 hours of physio a day. My residual disabilities were the best I could get to.

Returning to work was all about functionality. The 90-minute train commute was awful and was followed by a 25-minute walk. Others could do the walk in around 5 minutes. Sometimes I caught a cab when the weather was a problem. At work reviving my bureaucratic brain was surprisingly hard.  I typed with one finger, sometimes two. 

In July 2010 I became a founding member of our department’s Disability ERG. In early 2016 I was voted in as Deputy Chair and when the Chair quit the department in November 2016, I suddenly found myself leading a diminished and dispirited ERG. The department had been undergoing major restructures which led to us losing over 50% of our members and the early progress we had made had dwindled to an almost imperceptible crawl. 

Up to that point the ERG had been a passive advisory body that met with HR 4 times a year. The meetings lasted all day. The venue was excellent, and the catering was very good. The meetings were totally managed by HR, and our role was to contribute thoughts, ideas and accounts of experience. It was a good process, about which I have no criticisms. But it reached the limits of its potential. We needed more.

I had always been an innovative problem solver so my response to the unmet need of my members was to get busy.  I was in that role for 3 years and 3 months and was very successful. I was invited to present at the Australian Network (AND) on Disability’s Annual National Conferences in 2019 and 2020 on the innovative work the ERG had done. I also coordinated the department’s participation in the AND’s Access and Inclusion Index in 2019 and designed its 2020-2024 Disability Inclusion Action Plan (DIAP). 

My focus was establishing the adjustments and accommodations staff with disabilities needed to be able to do their jobs in an accessible and inclusive manner. I also acted to foster greater inclusivity in the workplace culture. For me inclusivity had to be universal. We couldn’t demand inclusion while we were excluding others.

My engagement with disability started way back in the 1970s when I worked in psychiatric hospitals providing personal care in a hospital ward and supervising patients during day activities. I later worked in Veteran Affairs procuring aids and equipment for disabled veterans and processing applications for dental treatment. Much later I negotiated license compliance with aged care services and private and NGO disability accommodation services and workplaces. Then I coordinated state-funded health and community access services to residents of private disability accommodation services and then ran an emergency accommodation service for children and adults with disabilities for my region. If I wasn’t proving direct support, I was solving problems and coordinating service delivery. I also ran disability accommodation service procurement exercises.

In essence I dealt with people with disabilities who were in need of direct care or services or who needed adjustments to physical settings, technologies, policies, practices or attitudes and beliefs over close on 50 years. The really strange thing is that it was only last year that I realised that disability had been such a dominant theme in my career. 

So, my encounter with postmodern and social justice ideas about disability seem to have come out of left field. But that’s because my focus on functional concerns left no room for the politics. Hence the idea that disability is the performance of an identity that should be celebrated leaves me stunned. The argument that a person can self-identify as having a disability to be a member of a particular community completely perplexes me. 

I struggle to have an opinion because I don’t understand these ideas. Nothing in now over 50 years of engaging with disability has given me any foundation for comprehending this. I understand that maybe these days I am so focused on work-related Disability Inclusion that I have a narrow vision of disability. 

One of my principles has been that inclusivity must be the foundation of Disability Inclusion. We cannot be asking others to be inclusive of us if we are not extending that spirit of inclusion to others.  That means we must be inclusive of those who resist our efforts. We cannot blame or come into conflict with others who do not see things as we do. 

We won the moral right to seek inclusion from our organizations because of the legislation that has been enacted and the policies and programs put in place. But when it comes to individuals there is no compulsion enshrined in law. We have won permission to persuade, not to demand. I am now aware there is a Disability Pride movement that says its members demand that their right to be included is granted. Yeah. Good luck with that. 

Disability Inclusion is complex and difficult. This is precisely because it has no coercive power. We cannot compel, only persuade. And here I am talking only of establishing adjustments and accommodations – whether in systems or in the consciousness of those who have power over the systems. Not even the coercive power of legislation is sufficient to move administrators with any enthusiasm. They have ways of engaging what is often described as ‘malicious compliance’.  This isn’t necessarily an act of evil (thought sometimes it is). It sometimes has more to do with status protection and arse-covering. But resistance can also arise for many reasons that are sensible and proper – like a genuine lack of capacity. Efforts at coercion result in conflict and rarely result in the desired outcome. 

My disability functional theory 

I can’t ignore what is going on in the sense of refusing to acknowledge that it is there and trending and a genuine source of passion and meaning for some people. But having now made a very decent effort at understanding what is going on I have decided that it’s nothing of any use to me.

Below I want to articulate my theory of disability – which I have had to make up in an effort to understand why I am responding as I am. I need to know that its not just reactive gatekeeping and unreflected bias.

A disability is an inability to do something because of a condition of mind or body that you were born with or acquire and concerning which you need some kind of assistance or accommodation to engage in a desired activity. A disability is, thus, the impairment of one’s functionality. 

In a work context there are several responses to a person with a disability which impacts their capability to perform their role:

• Adjust systems, processes, procedures, devices and physical spaces along universal design principles to remove unintended impediments to equal accessibility. 
• Modify any of the above to meet individual needs (subject to ‘reasonable adjustment’ provisions). 
• Influence the behaviour of organizational leaders to ensure demonstrable compliance with organizational policy, standards and principles. This will include accountability mechanisms. 
• Influence the organization’s workplace culture to promote, reinforce and reward inclusive behaviour at individual and work team levels. 

Disability is context specific. If an adjustment or an accommodation is not required, the disability ignored. That is to say that if a person’s capacity to act is not impaired in a certain context no disability is relevant. 

I don’t know whether the term Functional Disability Theory (FDT) exists anywhere. A quick internet search didn’t deliver anything suggesting it does. So I have invented it to make my argument. FDT has the advantage of preventing a person’s impaired capacity from becoming a persistent dominant element of a person’s identity. 

In a sense this embraces the logic of the Social Model of Disability (SMD) by acknowledging and addressing ‘disabling’ environmental factors to the extent possible. But it also allows that not all disabilities in all contexts are relevant to a person’s identity. 

FDT isn’t a philosophical or a political theory   It is a practical commitment to what works to address real needs of people whose disabilities adversely impact their ability to share life opportunities with others on an equal footing. In this case the context is the workplace, but it could apply equally as well to any purposeful activity. 

I have been arguing in this blog that Disability Inclusion is a skilled practice – a professional pursuit. Its moral foundation is attested and done. All subsequent activity is persuasive, involves the formulation of strategies or concerns relating to the design and implementation of solutions. There is only one objective – to help an employee with disabilities to give their best work with dignity and equity. 

By taking a purely outcome based functional approach a Disability Inclusion practitioner commits to acting to assure that an organization’s behaviour is aligned to its obligations, principles and commitments. 

At no stage of the working out the FDT in practice is there any form of coercion. At an organizational level responsibility and duty are already established. On an individual level persuasion is the only tool to be employed. 

A key element of the FDT is that a moral right to be included isn’t enforceable by coercion but must be freely recognised and honoured. A moral right isn’t a legal right. Neither the Australian Commonwealth Disability Discrimination Act 1992 nor the New South Wales Disability Inclusion Act 2014 seek to impose obligations upon citizens. The Disability Inclusion Act 2014 positively affirms rights. For example, under General Principles we will find: (8) People with disability have the right to live free from neglect, abuse and exploitation. But there is no positive requirement imposed upon private citizens to ensure this right is upheld.

Ultimately FDT is about fixing or solving problems experienced by staff with disabilities in a direct manner. 

It isn’t the only disability theory that may be held to be valid and valued. Adherence to one theory does not invalidate or negate another. It is simply rational to operate consistently with one theory. In my case I work within a workplace context. Here alternative theories are not a good fit for achieving desired outcomes. 

I make no pretense to be a theorizer. The FDT has been an instrument that has helped me clarify how I understand my approach to Disability Inclusion. It is not intended as a theory to be promulgated and defended. Its purpose does not extend beyond its clarification use.

Disability Identity is context sensitive. 

I have a rough list of 20 attributes which are part of my identity.  All of them constitute me. They are always present. But they are not always apparent in, or relevant to, every situation. 

For instance, when I am sitting at a cafe table I keep my crutches in easy reach. But I don’t need them at the table. The fact of my disability might be inferred by the proximity of the crutches but neither its duration nor nature are evident – and if I am not asked, I don’t tell. 

I drink from takeaway cups because my grip disabilities make holding a regular ceramic cup or mug neither practical nor safe. If I am asked why I am using a takeaway cup I will say why. But I will not offer an explanation otherwise. 

Beyond any functional context disability is, for me, irrelevant. If I need an accommodation or an adjustment I will ask. If I am asked about my disabilities I will tell. 

I noticed that in the department’s Disability ERG the founding members didn’t talk about their lived experience of disability unless it was to convey something about how it impacted their ability to do their jobs.  That was our focus and context. 

When I became ERG lead, I had to ask members about their lived experience at work so I could understand their concerns, but this rarely expanded into more personal areas. We were work colleagues and ERG members first. Our purpose for getting together was to address accessibility and equity issues experienced by staff with disabilities – purely functional. This was because we all knew what it was like to not have access or equity. How we lived with our disabilities in our personal and private lives wasn’t something we felt moved to share. There was no shame or uncertainty, just disinterest in the context we were in.

Friendships between ERG members were formed, of course. I know the experience of living with a disability in a personal sense was shared because of the friendships I formed. But our activity, as ERG members, was firmly workplace-focused because outcomes that reduced member suffering were what our mission was about.

My problems with theories about disability. 

Theories about physics work because we engage with the world in a way that is substantially consistent. But this is not to say these theories are the last word in how the world works. We have progressed from Newtonian physics (which still works) to quantum physics (which also works) – without having fights about which one is okay. 

Theories on social justice are another thing entirely. For starters they are not ‘scientific’ but social and hence subjective and political. You can be deeply involved in the welfare of others without the slightest notion of the storm of theoretical passions raging in the background. 

My troubles started when I had a conversation with a person who said they had ADHD and hence had a disability. My reflex was to want to know what that meant. The context was workplace related, so my thoughts went to functional concerns about adjustments and accommodations. The conversation didn’t progress, so I was left wondering. 

The next disruptive experience was coming across a mob calling themselves Disability Pride. Why? What was this about? It was demanding inclusion as a right. This was neither civil nor practical in my view. 

I had obviously been inhabiting an innocent fog for the past 6 years, longer in fact, as I discovered. 

I needed a quick education and so I read 4 blog posts from Mad in America and 3 books reviewing the social justice and postmodernism movements. Wow! There was some interesting and worrying stuff going down – and I was grateful to have been ignorant of it. 

The social justice movement has done some fabulous work in changing how we live our lives. But then academics have gotten involved – and this is where things have gone in a direction that I cannot feel any enthusiasm for. 

Now I have no objection to academics inquiring into, and theorizing about, whatever they like. Most of their efforts remain in-house and are read by very few people. But some of that work goes feral and ends up like cane toads or rabbits in the social landscape – a good idea at the time but rued with hindsight. 

I should note that most (probably 60%) of the non-fiction books I read are by academics whose work I esteem highly. I read a lot. I just started my 500^th non-fiction book since December 2016 (its July 2025 as I write this) – so it is interesting to me that it has been only recently that I have come across book about ‘Theory”. Here I am talking about papers rather than books – and especially ones that resonate social justice activists looking for arguments that support their passions. 

This wouldn’t be a problem if the theorizing was taken to be inspiration for insights that further the social justice cause. But what has happened is that theories have become political dogma that enshrines some really quite unhealthy emotions that then leads to intolerances, fights and schisms. It’s very similar to the conflicting theologies of historic Christianity. 

The Social Model of Disability (SMD)

The SMD is an example of how a theory has become a political position that isn’t as useful as it started out being. Now, if you even acknowledge the medical model of disability you are treated with scorn in some quarters. 

The original idea that many people with a disability are deeply disadvantaged because the way our built environment was so ableist was a critical insight that led to such as ramps being included in buildings and parks as well as a host of other changes to our shared spaces. I have been a member of my local government’s Access Reference Group for 4 years and I have seen an impressive commitment to assuring accessibility and inclusion.

But some now argue that the SMD is the only model permitted. In the book Cynical Theoriesthere is a description of an argument that deaf people are disabled by society because the community privileges hearing people and does not give deaf people an equal go by requiring everyone learning how to sign. You can see that in one way this kind of seems a fair enough argument, but on a functional level it’s completely silly. Teaching everyone to sign isn’t practical – even if they assented to learning. 

The Medical Model of Disability (MMD) acknowledges the simple fact that a disability has a diagnosable element to it. But this doesn’t actually exist as a model in its own right. It’s just a foil in the SMD which has made a host of assumptions. We can’t separate diagnosis from lived experience of disability in any setting – social or communal. One leads to the other. Except now the MMD has been replaced what I will describe as the Self-diagnosed Model of Disability (SDMD). It’s about how you feel, not how a medical practitioner assesses you. 

I have a bit of sympathy for this perspective – especially when normal emotions can be given a medical name and become a ‘disabling’ diagnosis. But to me this should be about the SDMD not only restoring the power to see oneself outside the medical diagnostic framework but denying any notion of disability. Instead, it by-passes the MMD and goes straight for a disability designation as if a medical assessment in an impediment to getting to the destination. 

Instead seeing disability as an adverse diagnosis, it now seems preferred. It confers some benefit that presently eludes me. From my functional perspective the only benefit is activation of entitlement to the support to receive the accommodation and adjustments you need to give your best work. Regardless of your personal convictions, that’s a needs assessment that should be made by the people responsible for arranging (and paying for) the needed accommodations and adjustments. This also applies to the Disability Inclusion advocates supporting their claim. How the SDMD applies outside the workplace context isn’t something I am currently concerned about.

I don’t like the SMD because it is poorly thought through. The point that many places are inaccessible because of design has been well taken and efforts at redressing that inequity are happening all over the place. Progress is slow because there is competition for resources for causes considered to be equally meritorious. That’s a fair point to debate, of course.

The roots of this accessibility inequity have arisen from historical and cultural causes that reach back millennia – to ideals of blemish-free perfection – which linger still in our psyches. And they have nothing to do with intentional repression. They are cultural rather than political – although the business of removing the inequity is very definitely political. But that shouldn’t be interpreted through a philosophically partisan lens, nor assumed to be the consequence of intentional heartlessness. 

The biggest problem with the SMD is that it does not distinguish between obligations imposed upon organizations via political power – e.g. via legislation, policy and programs – and the liberty of individuals not to comply with demands for inclusion. Can you imagine a government making a law that says all citizens must learn signing and maintain it at a sufficient level to ensure that they could communicate with a deaf person at an appropriate level? 

A model of disability that blames everybody else for not being inclusive is useless because it can’t deliver benefits and can only cause resentment. This kind of approach to Disability Inclusion will deflect attention away from goodwill efforts to make progress in arguing the case for greater inclusivity. We must remember that budgets which provide the resources to create the changes to accessibility and equity aren’t allocated with compliance with (all) legislation in mind – but on capacity to access the revenue needed. 

Its fair enough to make the case that more can be spent on Disability Inclusion but if you get into a political argument asserting that honouring all rights is paramount, you will be vulnerable to the same argument being waged by more influential proponents of other causes. Better to engage in persuasion to ensure a fair allocation. Our appetite for social justice is far greater than the pie we expect to feed it. We must identify our priorities calmly and strategically and not propelled by a storm of unresolved angst.

The problem with performance of an identity

Cynical Theories describes how, in the field of Disability Studies, there is a belief that disability is a ‘performance’ to be celebrated and that efforts to remediate a disability (the MMD) are oppressive. This is pretty much akin to criticizing me for trying to ‘fix’ my disability via the MMD solution of buying Canadian crutches. 

I was inspired by the dancer and choreographer Claire Cunningham who uses Canadian crutches in her performances who observed that disability is part of the spectrum of being human. She didn’t want to be ‘fixed’. But she did want to take advantage of technologies that could make her impairment less disabling – so she could dance.

The book also describes how, in the spirit of post modernism, self-diagnosis as having a disability in order to join a community identity is a good thing because it is disruptive of social norms. This reduces disability to a performance and an identity to be celebrated – a source of pride. 

On a personal level I find this profoundly offensive. Cynical Theories makes an essential point here. It is not the disability that is being celebrated but person. This is no better illustrated in the Special Olympics. It’s still called “Special” – a now way out of date term which I hope is more a marketing term than a reflection of a philosophical position. It is the spirit and determination of the athletes that celebrated. Not their disability. 

But maybe this is the point. The heroic status of an Olympian with a disability can be shared by all people with disabilities and those who identify as a person with a disability. No? Personally, I have no sense of reflected glory from an Olympian with a disability – no matter how much I admire their achievements.

I must be blunt here. I am also of an age when I should stop fantasizing about being younger, fitter and better looking. My 13 months of desperate physio gives me immense respect for athletes with disability and the work they put in to recover and then get that good. But I am more of a nerd. I worked that hard on my physio because I knew what would happen if I didn’t – I couldn’t be nerdy in an effective way. Yeah, a purely functional response. I have no interest in putting in the awesome effort it takes to be an Olympian. My focus is elsewhere. I can’t use Stephen Hawkins as a hero model because I am nowhere in that league.

I live with disabilities that radically changed my life. In one respect this change was catastrophic. In another I must confess that I think I am better person. I prefer the post GBS me to the pre GBS me. Acquiring a major disability is likely to trigger deep philosophical reflection. I was 3 months in an ICU paralyzed from the neck down and I did a lot of that kind of reflection because my future was very uncertain.

Conclusion

I know Shakespeare said “All the world’s a stage, And all the men and women merely players; They have their exits and their entrances; And one man in his time plays many parts… 

In this context, yes, disability is a performance – one of the many parts we play in the totality of who we are.

I think there’s a trend toward ceasing to take disability literally – as an impairment to an otherwise shared human ability that impacts one’s capacity to share the experience of commonly accessed activities. I don’t know why this is happening, but it does appear that ‘protected’ identities (eg LGBTQI+ and Indigenous) are subject to the same trend. It seems like a cultural phenomenon that we haven’t yet wrapped our heads around.

Some disabilities are not catastrophic. Being tone deaf or colour blind may wreck career dreams but they do not dominate how one lives one’s life. Other disabilities are life-defining. When I was working in a psychiatric hospital, I encountered a 12-year-old who was born blind and deaf. She was rescued from a shed where she seemed to have been secured when her family had gone out. Who knows how they cared for her. Maybe locking her in the shed was the safest thing to do at the time. 

What I did discover was that in the hospital she was permitted no loving care, no intimate parental connection, no loving sibling. The hospital’s ‘care’ was emotionally remote and clinical. It was, by any real measure, cruel. I quit my job over this child. I can’t see the idea of performance fitting her fate. Neither is this an identity one would want to assume.

I make no apology for ignoring the theories and politics of identity being applied to disability. I am completely focused on functional concerns that make life and work easier for people with disabilities – and that’s what I am going back to focus on now. I am somewhat grateful for the journey into a different way of seeing things – though I feel as if I am a tourist. It’s not how I want to feel, think or live.

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/

Introduction

Following on from my last post when I introduced the idea of the peer-to-peer model for ERG structures I want to knit together some key ideas drawn from a variety of sources. These are: 

• PurpleSpace’s Networkology – the idea that’s there’s at least an intellectual discipline behind how an ERG operates.
• Impact Networks by David Ehrlichman
• Humanocracy by Gary Hamel & Michele Zanini
• The manager who said the R in ERG should stand for Reference and not Resource.
• A varied set of sources thinking about teams and responding to operational challenges.

Why the staff association model doesn’t work

Staff associations are fine for social clubs and sports teams. I don’t have it in for them. They are just not how you address organisational issues which have serious legal consequences.

In NSW, at the moment, there is a move to alter workers’ compensation legislation to make it harder for people claiming psychological injury to pursue their claims. I agree there is a need to address what seems to be an excess of claims. But I disagree with the proposed remedy.

Workplace induced psychological injury is a serious problem. So psychological distress caused by exclusion and discrimination must be understood as a work health and safety concern. 

Back in 2011, as a member of a Disability ERG, I asked whether the exclusion experienced by staff with disabilities could be seen as a work health and safety issue and was promptly told it could not. The reaction was such that I decided not to press the matter. I had clearly touched a raw nerve.

Of course, the reaction was ridiculous. It was plainly a WHS matter. But admitting that it was would open a can of worms who would not be obedient to orders to get back in the can.

Ultimately fostering inclusion and psychological safety should be a whole of organization affair and integrated fully into an organization’s core business. It should be neither optional nor unskilled.

The function of an ERG should be to assist an organisation to end illegal discrimination and exclusion and to significantly reduce an organisation’s exposure to legal liability. The logic should be that the organisation is highly motivated to reduce its exposure, and the staff should be highly motivated to end their suffering. This should be a win-win. But it isn’t. There should be shared high motivation to achieve a common goal. But there isn’t. Why? As I have repeatedly asserted, answering this question has been a personal mission since early 2017. That’s 8 years ago. Still no answer? I am a bit thick? No. It’s complicated and I have needed to learn a lot.

So, here’s my present situation – why are organisations still okay with using a staff association model to address what should be an urgent staff welfare concern? Why think that a bunch of volunteer amateurs can be the magic solution to the puzzle that your own DEI teams haven’t been able to solve?

Time to move on

The peer-to-peer model is my present rough alternative. I say ‘rough’ because it hasn’t been trialled and refined. It is predicated on several critical notions.

The first is that organisations must move away from any assumption that an ERG is just for the subordinate ranks. It must be representative of the organisation and ensure that membership includes senior executives and senior managers. They can still be sponsors and champions, but they are members and not external extras doing the ERG a favour.

The second is that the ERGs must reflect contemporary methods. A project-based reference team can meet the needs of organisation and staff in the sense that it takes a professional approach to addressing the needs of the membership (ending exclusion and discrimination) and meeting the responsibilities of the organisation (eliminating exclusion and discrimination).

This is part of core business. It’s not an add-on or an extra. In the public sector it’s about conforming with legislation and following policy. Doing so is core business, not a nice thing to do when time and resources allow. Again, why do this with volunteer and amateur ERG members who are also time poor and unsupported by their managers and executives? It makes no sense, when you think about it deeply.

Conclusion

Below is my current version of the peer-to-peer model. It’s not a destination but a starting point. It’s something to trigger thinking about what might work best.

The peer-to-peer network model

Essential argument

Staff networks have been based on a traditional hierarchical and bureaucratic model. It is important to ask whether this fits current cultural, workplace and operational trends and needs.

A peer-to-peer network model is team-based with a capacity to be flexible, distributed and localized when doing so is advantageous. It also spreads the workload around. It diffuses the leadership burden in a way that enables adaptation to disruptions and the absences of key people.

It is a more dynamic and responsive operational model better suited to contemporary workplace realities – especially time poverty.

Basic structure

A Core Advisory Team. This is a team of subject matter experts specific to the network. It includes the sponsor and champions who bring higher level organizational expertise 

At least 3 coordinators.  Their job is to organize people and ensure an activity is well-run. But they don’t run the activity. 

The Core Advisory Team (CAT) can be standing and relatively fixed or drawn from network members as required. Members can volunteer to participate in the CAT in an ongoing capacity or as needed.

Areas of expertise needed:

• Coordination and collaboration 
• Organizational insights
• Maintenance of intranet site
• Communication
• Mentoring and coaching
• Special interests related to the network’s theme.

Features

• Takes a distributed network approach with an organising hub. 
• Allows for member-initiated or requested activity at local or divisional level. 
• Supports emergence of special interest-based action which might suit a specific division or business area. 
• Enables the creation of SME sub-groups in particular divisions and enable division-based leadership so network can address multiple issues without taxing central leadership
• Fosters specific competences and capability-based leadership and action.
• The network can engage in whole-of-network action or division by division activity as best suits member needs.
• Primary administration demand is creation and maintenance of member demographics and mailing list. 
• Communications maintenance can be done by a small SME team – Teams, intranet and email. 
• CAT team engages in accountable professional activity that can be put on a CV as a credible element (this requires organization support to promote the status of networks).
• The sponsor and champions have no leadership or supervisory role. But are team peers with specific expertise. Engagement at this level will enhance their ability to perform their sponsor and champion roles. These roles might adopt a coaching or mentoring approach – rather than advisory or problem solving.
• All networks have a code of conduct that governs all activities. 
• Organization recognises that members of CATs are engaging in professional development roles like any other role within the organization. CAT members are eligible to participate in any learning and development opportunities relevant to their network roles. 
• Coordinator roles determined by competitive application. 
• Other CAT roles are determined via EOI and assessed by coordinators and champions – but this is more about excluding applicants who do not meet selection criteria than selecting for superior capabilities. This approach creates a ‘talent pool’ that can supply issue or project specific CAT members.

Introduction

I have come to the end of a 2-year casual consultancy with my former employer, working with leads of ERGs. I know I was of great help to some. There were elements that frustrated and disappointed me as well. That aside, the experience necessitated me taking a deeper dive into what an ERG is and how it operates, and what Inclusion is about, than I understood at the commencement of my engagement.

Below I want to reflect on what I learned about ERGs and Inclusion. 

One ERG Lead is not like the other

There are some basic rules about effective leadership – as there are in any setting. But how they are manifested is utterly dependent on the individuals. 

The first thing I had to do was understand that my job was not to turn other ERG leads into a replica of me. I knew that of course, at a theoretical level. The harder part was making it practice. There were ego and reflex things to be addressed or accommodated – in me and the people I worked with. 

There is an abundance of excellent sources on leadership. Some ERGs leads will read some of them. Others are either not readers or think they already know how to lead. Some do, most don’t. All can do with upgrades to their knowledge and capabilities. Not all leads agree. 

Some ERG leads have leadership experience. Others do not but are highly capable and can grow into the role with support. 

Leads have different ideas about their ERG’s mission. These ideas tend to match their assessment of their own capabilities and reflect their own biases. I had to better understand that not all the ERGs had the same problem-solving focus I had had as the lead of a Disability ERG. Some ERGs saw their mission as principally celebrating diversity and Inclusion. As it happened, I worked more with problem-solvers. I think this was my bias at play. Each problem-solving ERG needed to develop its own style and method. Not all problems are similar.

Having a strong strategic sense of one’s organization’s culture and politics makes a difference. Hence ERG leads will have varying levels of awareness, depending on their experience in the organization and how complex that organization is. 

As a fledgling consultant I had to get my head around these factors, for which there was no playbook. I then had to get to know each ERG lead well enough to develop an understanding of their capabilities. As this was a voluntary relationship I succeeded with some and failed with others. Not everyone wants a consultant hanging around.

Leadership is a skill apart from the ERG’s mission. 

In this instance ERGs were selected via membership vote. As a consultant I was allowed to learn how many ERG members voted. It was significantly less than 10%. Given that there were no key capabilities required of Leads beyond the desire for the role this meant those who were elected to the roles didn’t always possess the minimum capabilities to perform in the leadership role without considerable support. 

The vital lesson here is that leadership selection must be conducted on the basis of an assessable selection of capabilities, and not the random consequences of elections.

Leadership is a team affair. 

ERGs in the sector I worked in were established based on the staff association model. This foundation led to assumptions that there is a primary leader (the Chair or co-Chair), a deputy chair (in this case 3) and (in some cases) a management committee. 

The problem with this model is that it places an emphasis upon managing the affairs of the group rather than attending to the group’s purpose for being. If we think in terms of a tennis club – its purpose is to facilitate the playing of tennis. It’s not about managing how the players come together. That’s a valid function of the club, just not the primary one.

In many organizational environments these days, staff are time poor. Volunteer members of the leadership team aren’t necessarily the best Inclusion practitioners and Inclusion practice isn’t necessarily confined to the leadership team. This can put too much of a burden on a handful of people who are time poor to start with. Lean administration and intense focus on Inclusion practice is a better model. 

This means a practice support group is a better model than a management committee. This can help the leadership team engage in Inclusion practice, not chairing or managing the ERG.

A better overall model for an ERG is a team rather than association, and my preferred model (for now) is what I call a peer-to-peer model. 

One of my main innovations as a Disability ERG lead was to develop a Guidance and Action Group (GAT) which was the core 15-member advisory group and which I ran as a professional de facto business unit focused on delivering outcomes for members. Admin was minimal – and I did that myself. 

Looking back now, that model was not something suited to everyone. The peer-to-peer model is my current best evolution of the GAT idea. 

Volunteer doesn’t equal amateur

In the sector I worked in ERGs are seen as voluntary staff-led groups modelled on a staff association. Now I think this is very outdated.

This model has led to the assumption that an ERG is an amateur body – by both the ERG and its organization. But trying to address the problems of advancing Inclusion using well-intentioned amateurs without related professional grade skills doesn’t serve the needs of the ERG’s members.

Here is an essential point. By under-estimating the complexity and difficulty of achieving greater Inclusion we have left some ERGs struggling to get traction and gain much success. This is a challenging role to take on and there must be a reasonable effort:outcome ratio. If the challenge is under-estimated that ratio will be poor.

An ERG as a professional partnership with its organization

An ERG has only one function – to serve the Inclusion needs of its members. The low participation levels in elections of office holders should tell us that administration of the ERG is not a high priority. Candidates for offices are not selling their skills as Inclusion change agents but as administrators.

The members deserve the best leadership they can get, and the organization should require the best leadership that can be obtained. This is because the Inclusion needs of staff are primarily an organization’s responsibility that it cannot rightly pass off to a group of volunteer staff members. The logic of having an ERG is that the organization needs staff engagement in meeting its Inclusion obligations – as a partnership – a collaboration. 

In my time as a consultant the major concern raised by ERG leads was not having the time to work on what the ERG was supposed to do. I have previously argued that it is okay for ERG leads to put in their own unpaid time so long as this was about doing recognised professional development work. Running an ERG well takes a lot of skill and sits outside core business. It could be seen as akin to doing a course of study. I will come back to this because it now needs clarification. 

Voluntary work should not replace paid hours. This creates a question of perception as well as practicality. At what point is it reasonable for an organization to sanction and support an ERG in helping it meet its Inclusion obligations (a key element of staff welfare in the workplace) and then not enable the ERG to do what is necessary for it to be an effective partner? 

When is unpaid work okay?

The work of a competent Inclusion change agent is demanding and requires an education and skill acquisition. It should be supported by an organization as the development of high-level skills that have considerable value in other roles influencing behavioural change.

This could be the basis for setting up a developmental program that requires out-of-hours work – provided there is also appropriate formal recognition. The scope of the program should be negotiated with participants – but with required core components.

Resource group or reference group?

A manager I was talking to came up with this insight – preferring Reference over Resource – but I realised I had initially misheard them and missed its import. 

ERG as Employee Resource Group vs ERG as Employee Reference Group sends 2 distinct but related messages. 

We need to ask ourselves what resource a group of employees is – the lived experience of not being included. By contrast reference is a verb – and denotes a relationship – a group referred to as a source of expert knowledge. In the case of disability this is not just the experience of living with disabilities but also of experiencing exclusion in the workplace because of those disabilities. Let’s also add the potential of expertise in policy formation, management and leadership and other areas of professional insight. 

Following the principle of nothing about us without us an organization’s efforts to eliminate exclusion must include the insights of the people being excluded in the following ways:

• Assessing the sufficiency of policies
• Feeding back on the efficacy of policy informed actions
• Advising on the level of compliance with policies at a local level
• Reporting on the impact of exclusion on individuals and teams.  

Expanding the embrace of ERGs 

ERG membership tends to be predominantly junior staff. There are many reasons for this. In the case of disability, senior staff are less inclined to say they have a disability for fear of discrimination from their peers. If ERG membership flags membership of a discriminated against minority group it’s not what you want to be known for. Being ‘one of us’ is way better. Members of minority groups are less likely to be present in senior grades. And being a member of a staff-led volunteer group isn’t a good look for an executive. 

What I have proposed in the peer-to-peer model is that executive sponsors and champions aren’t roles apart from the ERG but members of it – but without ranking authority. 

This has a few advantages. First, it brings executive expertise and insight into consideration of issues. Second, it feeds insight on Inclusion issues into executive leadership ranks. Third, it validates membership of ERGs by senior managers and executives. 

The problem of being staff-led

Under usual conditions the organization controls the conversation, and the ERG is a passive partner. This was the model of the ERG I joined in 2010. We were able to speak up when we were asked whether there were any questions. But as a rule, it was staff-led only in the sense that meetings were chaired by a member of the ERG. The organization was, otherwise, fully in control. 

I changed this in May 2018. The ERG identified issues and initiated engagement with the organization. The ERG wasn’t just staff-led in its internal functions, the drive to make the work experience for staff with disabilities fairer and safer was also staff-led. 

While the organization had the duty to ensure the work experience for staff with disability was more inclusive it needed the ERG to drive the cultural change necessary to make this a habit practiced by staff at all levels. 

The dynamic between leadership, policy and culture is not well understood – by leaders, policy makers or ERGs. 

Conclusion

My success as an ERG leader is at the foundation of my former employer’s current ERGs. But the rationale for how they now operate wasn’t fully based on what I did. The result has been a misunderstanding of how an ERGs might best operate and hence I was invited to consult. The upshot is that some ERG leads have benefited from engaging with me and I may have influenced some changes in how ERGs are understood. But it is also clear that we don’t see eye-to-eye on a theory of what an ERGs is and how it might operate. 

What I did to be successful isn’t fully translatable to any other ERG lead. I had a unique set of experiences and skills. By that I mean only that they were mine, not that they were superior. 

What I did was to set up some key elements for success. The peer-to-peer model is my version of what I did well matured into a foundation for contemporary ERG. 

However, there are also several not negotiable elements as well:

• ERG leads must have a minimum set of capabilities and must be selected by and agreed competitive process that is not an election
• ERGs must be seen as a professional partner in assisting the organization meet its Inclusion obligations. This should be confirmed in a policy. 
• There must be a clear contract between the organization and the ERG that places a priority on addressing Inclusion needs of members and has a clear contract that forms the basis for understanding what resources are required and provided, and the setting of accountable outputs and outcomes. 

In the final analysis exclusion causes injury and it hurts. Eliminating exclusion in a workplace is neither easy nor quick. But it can happen easier and faster when efforts to make it happen are done well – and professionally. 

I was successful only because I had 15 ERG members who formed the Guidance and Action Team. I have said that these people were the heart of our ERG. They were because they had been hurt and were still hurting because of being excluded in some way. They were a constant reminder to me of the ERG’s purpose – to end suffering. 

While I was successful at the time I can see that ERGs need to mature to be able to meet the realities of now. 

There’s a very interesting essay by Alberto Vásquez Encalada on Disability Debrief in which he laments that Disability Inclusion workers have become professional and have lost the passion to drive Inclusion with the energy of years ago. What he means is that they have become professional bureaucrats and no longer change agents. He makes a powerful point. But I want to add that a lack of professionalism as a change agent can turn an ERG into a staff association unable to trigger the change it was established to foster. Hence it cannot do what was formed to do – end the suffering of its members.