Month: August 2025

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.