The peer-to-peer model for ERGs

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.

What have I learned?

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.

Does the way we see neurodiversity lead to people wrongly identifying as having a disability?

Introduction

Last year I had a conversation with a person who described themselves as neurodiverse and a person with a disability because of their neurodiversity. During our conversation, I observed that not all forms of neurodiversity were a disability. They disagreed with some energy, and I asked if we could continue the conversation later. They agreed, but it didn’t happen. 

I have been concerned about the argument that neurodiversity is a disability as more people seem to be making the same claim, but often without any clear argument to back up their claim. 

I fully appreciate that for many, especially older people with a late diagnosis, discovering that they might be neurodiverse can help them make sense of their life experiences. And I am not saying that neurodiversity doesn’t provide a basis for understanding that some forms of atypical cognition and behaviour do fit the description of a disability. 

What I am noticing is that identification as being neurodiverse, while offering explanation for experiences, doesn’t sufficiently distinguish between difference and disability. It also seems that those for whom the disability explanation is valuable are claiming to be neurodiverse as a form of identity. 

Why make the claim? A former colleague (team member) and a friend is a case in point. After a meeting, a director approached me to ask me to please manage my team member’s behaviour in meetings. They were constantly asking ‘inappropriate’ questions. I was surprised. The questions seemed pretty much on the money and showed a lot of insight. But maybe they were impolitic? Showing up leaders like that wasn’t a good look. 

So, I decided to ‘manage’ my team member’s behaviour. We had a chat. It turned out that this wasn’t an unusual reaction and they were often getting into bother with senior managers. They were puzzled because they never intended to be offensive in any way. I had an inspiration. I asked them whether they had ever had an IQ test. They had. I asked the score and was told. Problem solved. They were seriously way smarter than the Director. 

Solution? They could choose to continue asking questions but with the awareness they were showing up the senior managers. If they wanted to do that, that was fine. Or they could take a more subtle and strategic approach. The questions still got asked, but only sometimes, however the problem went away. 

I tell this story because it demonstrates a form of neurodiversity – a singular perspective on issues that others did not have. There was no disability but there was a need for modification of behaviour – or accommodation of it. The Director didn’t have the self-awareness to adapt their behaviour, so it fell to my team member to adapt theirs. The ideal would have been to embrace the diversity of perspectives and accommodate them. But that’s not what usually happens.

There’s another problem with insisting that one’s claim to have disability because of claimed neurodiversity (I say claimed because apparently there’s a lot of self-diagnoses – which nevertheless might still be accurate). It is the difficulty of demanding others accommodate your behaviour because you have a disability and are unable to self-regulate. This might be true, but it would take good clinical insight to argue that self-regulation is out of scope for you. 

The risk here is that a narcissistic inclination that might dispose a person to claim disability as an alternative to self-awareness and engaging in self-regulation. And what might be a better claim than to be neurodiverse? How common is this? We all know people who have declined to self-regulate before neurodiversity became an identity option. 

Now I am not claiming all or most assertions that a person has a disability because of neurodiversity are false or dubious. I am simply cautioning that such claims should have competent clinical grounds to substantiate them. 

Neurodiversity is meant to assert that some forms of cognition and conduct are so significantly at variance with the ‘normal’ as to be recognised as worthy of remarking upon. In this regard I have also encountered claims that neurodivergence is the same as neurodiversity. It isn’t. Divergence and diversity have distinct and different meanings.

I asked my former colleague and friend whether they saw themselves as neurodiverse. They said, “Under my own definition, yes.” I didn’t ask what that definition was because the point was made for me. We can define the word on our own terms.

Difference, disorder or disability 

There is a range of conditions which are described as forms of neurodiversity, and which are often seen as inherently a disability. But it is better to say that they should be seen as a disorder. And not all disorders are disabling. The two most common are ADHD and Autism. The 2nd D in ADHD is for Disorder and autism’s fuller name is autism spectrum disorder (ASD). 

However, whether these are necessarily disorders is contested. Jessie Hewitson, writing in The Times Magazine in early June 2025 says that ADHD “is not a disorder but a brain type, a variety of which is perfectly normal, not a problem to be fixed”. Her article was titled Everything you think you know about ADHD is probably wrong. She is the author of ADHD: How to Raise a Happy ADHD Child.

Hence, we also have a problem of using familiar terms while no longer believing they mean what they literally say. Is what is called a disorder a dysfunction or a deviation from the norm and called a disorder simply because it is disruptive to the norm?

Both ADHD and ASD can express in severe forms that can be called a disability. And even in milder forms of expression can create a need for some form of accommodation. But we make accommodations for other people all the time. It’s that we have limits on what we decide is okay and what is worth our effort.

One of my nephews has been diagnosed with Asperger’s syndrome. For a long time, his social interactions were dysfunctional beyond people who had gotten to know him. He had needed others to adapt to his behaviors because he hadn’t been able to adapt on his own account. But in chatting with his parent recently I was told his ability to adapt has been growing steadily in recent years.

A need for accommodation can be considered a disability because the individual’s range of action is impeded by a condition not amenable to their intentional action. But we must be careful how we think about this.

The social model of disability is often invoked here. But I am wary of this. We can remove a lot of disabling barriers to inclusion by mandating modifications to our physical, policy and legal environments but we can’t mandate greater compassion, patience, empathy and insight by individuals. When it comes to cognitive and behavioural differences or disabilities this is the most important thing to consider.

When does a neurological difference become a disorder and then a disability? And how can we best respond?

Is neurodiversity being misrepresented?

Wikipedia has an interesting entry on neurodiversity. Here are a few excerpts:

  • The neurodiversity paradigm is a framework for understanding human brain function that considers the diversity within sensory processing, motor abilities, social comfort, cognition, and focus as neurobiological differences.
  • The neurodiversity paradigm argues that diversity in neurocognition is part of humanity and that some neurodivergences generally classified as disorders, such as autism, are differences with strengths and weaknesses as well as disabilities that are not necessarily pathological.
  • Neurodivergent individuals face unique challenges in education and the workplace. The efficacy of accessibility and support programs in career development and higher education differs from individual to individual.
  • At first glance, neurodiversity-lite appears to offer an important cultural shift. It reframes conditions like autism and ADHD in a more positive light, emphasizing strengths such as creativity, attention to detail, hyperfocus, or out-of-the-box thinking. In doing so, it counters the historically deficit-based narratives that have dominated psychology and medicine. This framing can help reduce stigma, encourage self-acceptance, and support hiring initiatives that recognize neurodivergent talent. For many, this more affirming view has opened doors—both personally and professionally.
  • However, this surface-level positivity comes at a cost. Critics argue that neurodiversity-lite risks overemphasizing exceptional abilities while erasing the real-world challenges many neurodivergent individuals face—especially those with high support needs, intellectual disabilities, or non-speaking communication. It is most visible in corporate or media narratives that promote the idea of neurodivergence as a “superpower”, particularly when it serves productivity and innovation—often framing autistic individuals as ideal workers in tech and STEM fields. These narratives selectively uplift individuals who can “perform” in neurotypical environments with little to no accommodation, leaving behind those who do not fit this mold. In doing so, they reproduce existing inequities under the guise of inclusion.

I recommend the whole Wikipedia entry. There were several relevant takeaways for me in this context:

  1. Not all forms of neurodiversity express as disorders or disabilities. It is an inherent part of the human condition.
  2. Neurodivergent individuals may have unique challenges in workplaces and in education.
  3. The neurodiversity movement moves away from the deficit model to a more positive and affirming approach.
  4. It is possible to misdirect our thinking about neurodiversity into celebrating exceptional capabilities and in so doing turn attention away from real and more common needs – learning styles, communication styles, and forms of relating.

The neurodiversity movement arose from the work of autism advocates who focused on difference and not deficit. It has developed into a much wider movement – which is a good thing. But Wikipedia says something vital – “The neurodiversity paradigm argues that diversity in neurocognition is part of humanity.” We are all somewhere on a neurodiversity spectrum.

Hence to describe oneself as neurodiverse, and hence a person with a disability is an identity claim that seems to be potentially problematic.

I am in sympathy with people who get a diagnosis of a condition asserted to be a form of neurodiversity which then makes sense of life experiences. It can be a ‘light bulb moment’ that can make chaotic and traumatic life experiences at last comprehensible. And I mean no disrespect in offering a critical reaction to identity claims that might arise consequently.

Neurodiversity is a natural phenomenon, not a category. We need to be careful that our language is honest and clear rather than swathed euphemisms. 

Being neurodiverse is being contrasted against others who are described as neurotypical. But having established that humans are neurodiverse as a species and some, maybe the majority, can be said to be neurotypical others, a minority should be described as neuroatypical.

I think that here ‘diverse’ is a euphemism for atypical or abnormal. I entirely understand that atypical or abnormal are terms frequently used in a pejorative sense. Normal is good. To be thought not normal is to be identified for exclusion and derogation.

Back in the early 1990s we were educated about people with ‘special needs’ and this morphed into ‘special people’ who even had ‘special abilities’. It was an effort to make disability more acceptable, but it backfired. For a while being called ‘special’ was a cruel insult. You can’t solve a problem of attitudes and beliefs by fiddling with language.

I grew up with a sense of ‘wrongness’ about me. I didn’t quite fit in. I was a gifted child but also often awkwardly out of sync. After listening to detailed descriptions of autism in Neurotribes by Steve Silberman I recognised elements of Asperger’s Syndrome in me – but in a mild form – and not enough to feel that a diagnosis is appropriate. It was enough to trigger me to pause and reflect and understand why I had the experiences I did. This inspired me to look at my ‘tribe’ and realise that its members are all distinctly neuroatypical. 

I want to be empathic toward those who feel drawn to describing themselves as neurodiverse but also wonder why not say neuroatypical with confidence. Its more accurate.

The risk I see with using a term like neurodiverse as an identity tag is that it is easy to point out that you can’t rationally use that term to distinguish yourself from neurotypical folks because ‘diverse’ and ‘typical’ are not related opposing terms. Diversity embraces the typical and the atypical alike. And the typical is still a spectrum – although on a more granular level.

If we were thinking about height rather than cognition, we would understand that we humans have a range of heights with extremes we call dwarfs or giants. We have an informal ‘normal range’ that isn’t nailed down but it ranges between 152 cms and 183 cms in my experience. I am 185 cm, so I was abnormal or atypical for my generation. Would I call myself height-diverse? No. Because its meaningless.

I want to assert that calling oneself neurodiverse is also meaningless and argue that saying “I am neuroatypical” is much stronger and clearer. If you know you are ‘different’ it’s hard to make that case when others neither see it nor respect it. 

We humans have a bias for normal and different is a pain if it means we have to pay more attention and adjust our behaviour. Neuroscience helps us understand that cognitive effort can equal threat and that sometimes it is only in-group affiliation that turns that sense of threat into loyalty.

If you are different in a disruptive way, it would be nice for others to accommodate that. But that’s unlikely unless those others are atypical in a way that triggers empathy – or that they are sufficiently inclusive to care enough to make the effort.

The danger of identification and making demands

We need meaning in our lives. Things happen to us, and we don’t know why. Then one day we are given an insight and suddenly so much of what we have experienced makes sense.

I have listened to people who have received an ADHD diagnosis late in life. It’s recognised as a form of neurodiversity. So, I understand that seeing oneself as neurodiverse is much better than seeing oneself as having ADHD. CBC’s Ideas program Neurodiversity and the myth of normal Part 2 is a useful show.

But then progressing to seeing oneself as having a disability because that is more respectable than having a disorder? Again, that makes sense because we have a positive attitude toward disabilities relative to our attitudes towards disorders. The word reeks of negative connotations.

I don’t know whether this is true for the person I had a conversation with. I reacted to their assertion that neurodiversity is a disability thinking “That isn’t true, but why would a person say it is? What would motivate them?” I liked the person (I still do) and I wanted to learn more. But they chose not to continue our conversation.

I tell this story because I am seeing an emergence of what seems to me a trend toward disability identity politics. I am not asserting that here is an intentional instance, only that in this story we might see how it might happen.

Several months ago, I witnessed a forum featuring 3 people who identified as neurodiverse and having a disability in consequence. I listened to the session with fascination and puzzlement because of two things. The first was that none of the speakers said anything about their disability. The second was that no speaker gave any hint that they were anything other than highly articulate, very intelligent and socially confident. The 3 speakers could have been any 3 younger people having a chat about their work lives.

I was left puzzled. What was going on? Had I missed something or was I just seeing the emergence of a disability identity movement as it broke into my awareness?

In Visual Thinking Temple Grandin worries about the readiness with which Asperger’s syndrome diagnoses are made, observing, “When does being a little geeky become autistic?”

The rise in interest in neurodiversity must be welcomed and then advanced beyond its reliance on euphemisms. There isn’t a tyranny of the typical or normal, though it looks like that. The typical or normal mindset prefers stability, predictability and the absence of cognitive effort. There is a tyranny of other atypical mindsets. Wanting political power or immense wealth are atypical desires that can warp the normal. So many things that are wrong with our world come down to atypical desires.

But there is a domination of the typical or normal, it’s just not a tyranny. The normal can be dangerous, oppressive or even terrifying to the atypical. Being atypical is, in its own way, normal. That is that it is normal to have people who are neuroatypical in our communities.

This is a really important thing to understand. Our human psychology isn’t set in stone, but it is slow to change – subject to evolutionary influences. Railing against this slowness or trying to manipulate it politically cannot work.

We are psychologically disposed to take our cues from leaders and to emulate them. If they are not disposed to be inclusive through their examples in action or are prepared to alter the way language is used, we are left with the options of persuasion, subversion or rebellion. We cannot afford to do whatever we choose to do ineptly.

Disability Inclusion is about embracing diversity. We want to get to the point where we can celebrate human diversity, period. The Scottish dancer and choreographer, Claire Cunningham, observed that disability is just part of the spectrum of being human. I wish we could take the same perspective on neuroatypicality and be clear-eyed about being different. 

But we cannot deny the heritage of our psychology – being cognitively and behaviorally abnormal or atypical will always be a ‘threat’ to the normal if such difference isn’t seen as the seat of power and authority.

Being atypical doesn’t inherently mean something adverse. We celebrate atypical people, we ignore them, we fear them. We can also embrace them by expanding the scope of ‘one of us’. This means putting in the extra effort to be more receptive. Accommodating people we are unfamiliar with is part of our inclusive and compassionate aspiration as a culture. It’s a goal we must work toward together.

Militant identity politics seem to be the flavor of these times. Being atypical or being thought to be atypical can be the source of real injury. The pain of exclusion triggers the same parts of the brain as physical pain does. But how we respond matters. We can’t demand inclusion while excoriating and excluding the people we accuse of excluding us.

We need to preserve the idea of diversity as embracing everyone, not a tag to apply to a few. Celebrating diversity is about celebrating people for who they are, not about creating categories with which to distinguish them from us.

Conclusion

In strict terms we can’t describe ourselves as neurodiverse as a category apart from neurotypical. But we may feel the need for a synonym for atypical or abnormal, given their history of being used to identify and exclude non-conforming individuals or groups. 

The challenge is to make neuroatypical okay because neurodiversity is part of the human condition. Taking a political perspective may be attractive, but it’s not helpful. We must be way more subtle and gentle. Because we are talking about changing the beliefs, attitudes and behaviors of individuals the only valid and respectful option we have is persuasion. There’s a huge treasury of scientific insight on the art of ethical persuasion that offers us better outcomes than the politics of injury and angst.

Identity politics is inherently tribal. It’s about them vs us. From a personal perspective I am happy to acknowledge my sense of being neuroatypical to myself because it makes sense of so much. But do I want to wear a badge saying this is who I am? No, save in contexts where doing so is meaningful and useful.

Maybe the political dimension is a precursor to the emergence of reasoned and confident assertion of personal identity based on deeper knowledge and greater self-awareness? We are far better off celebrating neuroatypical people as ‘just one of us, only different’. It isn’t easy. There are a lot of bad, harmful, habits we need to break. But what are the alternatives that you feel okay about?

What I have said here is not an attempt to make a definitive assertion. Disability Inclusion is a constantly evolving area of thought and I want to stimulate conversation, not kill it. I have attempted to articulate my concerns on this theme with balance and respect. This is too important a theme to get wrong or flee from out of fear that disagreeing will incur an avalanche of wrath.

We identify because it is important to us. But that doesn’t always mean the identity we assert now will endure as we discover more about ourselves and the world we live in. How we identify others matters too. We once used the gentle and inclusive word eccentric to described atypical members of our community.

Viva neuroatypicality! Or maybe “Viva Eccentricity!” Even “Vive la différence”

What we don’t know about how to make things change

Introduction

I was listening to one of my favourite podcasts, the seriously nerdy You Are Not So Smartand discovered a chat with Greg Satell, author of Cascades: How to Create a Movement That Drives Transformational Change. I had listened to an audiobook version of the book a while back a figured a refresh was in order.

It was a handy refresh, and I encourage the reader to click on the hyperlink on the word chatabove.

Below I want to reflect on why changing how people feel and behave is so difficult to do effectively. I started this blog in late 2021 to chart my efforts to get my head around the nagging question – “Why is disability inclusion so hard?”

The mistakes we make

When we are passionate about a cause, like disability inclusion, that seems so self-evidently right, we expect other people to also ‘get it’. And we expect them to change their attitudes, beliefs and behaviours to conform with our clearly morally valid position. But, as experience tells us, many don’t. They don’t ‘get it’ and they don’t change. What’s wrong with them? Nothing.

We have been sold the fantasy that good people will respond rationally to information about people suffering and will adapt their behaviour to be more compassionate. It’s a nice fantasy. We have a simple faith in the inherent goodness of other people, and we believe they will rationally respond to evidence that they need to be kinder and more inclusive. But many won’t and don’t. And this isn’t because they aren’t good people. They are ‘good people’, but we don’t understand them.

We humans are profoundly complex. Philosophers have known this for millennia. Religions have preferred a pared down zero-sum game of simple binary opposites: One of us = good, One of them = bad. This mindset has suffused our culture and has dominated how we imagine and how we choose to act. This isn’t to say that religious people are in any way a problem, only that the wider cultural impact of religious attitudes has been to activate our inherent propensity for bias.

When we feel morally justified in our beliefs it is easy to think that people who don’t agree, or don’t act, as we think is best, are morally deficient.

In relation to disability inclusion this can become a huge problem because we can believe that failure to act on what changes we want is a moral failing. We can then see ourselves as moral heroes fighting the good fight but are defeated by morally deficient, but stronger, opposition. So, we can get a serotonin hit from our brains that makes us feel good as failures.

There’s a popular saying attributed to Einstein. It is: “Doing the same thing over and over and expecting a different result is the definition of insanity.” Now, Einstein didn’t really say this, but I do know that this behaviour is typical of groups who say they are change agents but have an awful record of routine failure. If failure gives you a reward (like a serotonin hit) there’s a risk the reward becomes more important than the mission.

My education on this was as a workplace and regional union delegate in the latter half of the 1980s. Our reflex was confrontation on the grounds that ‘management’ was inherently opposed to worker rights. It wasn’t. We ended up having fights that were pointless and losing arguments we should have won just because of our attitude. We were encouraged to feel like heroes in a struggle when, in fact, we were fools who squandered opportunities.

Disability ERGs can’t take a militant perspective, but they can assume their failure to get the changes that they justly want is down to management not caring about staff because of a moral failing.

Now it is true they often don’t care. But it’s not a moral failing. Its way more complex than that. If you want to drive effective change in favour of staff with disabilities you need to put aside your moral bludgeons and take up a scalpel.

You may not like complexity, but it’s what you have

We humans are complex enough as individuals but put us in groups and things get a whole lot harder. Add organisations into the mix and the level of complexity is enough to blow your mind.

There is a vast industry dedicated to making organisations work. There are academic researchers engaging in highly disciplined research. There are consultancy businesses offering solutions. There are businesses offering training, coaching and mentoring services. All of this effort is dedicated to the goal of helping an organisation to be the best version of itself it can be.

There are two opportunities. One is that an organisation taps into this pipeline of evidence and support at whatever cost it chooses to pay. The other is that it doesn’t. The latter is more common. There is a fundamental distinction between organisations run by highly skilled professionals and one run by well-meaning amateurs. Most public sector agencies fall into the latter category. There are some gifted amateurs, of course.

So, here’s the thing. If you are running an ERG as an inspired, passionate, and maybe even gifted amateur and you are in an organisation run by well-meaning, and well-paid, amateurs, how do you expect to be effective? Other than by serious good fortune your chances are poor.

When I led a disability ERG, I was extraordinarily lucky. I had gifted senior leaders supporting me, a developmental experience that transformed how I operated, and I had some key foundational attributes that I brought to the role. One of those attributes was a passion for doing research.

I don’t expect other ERG leads to have the same attributes. What we do with our personal time is our own affair. I just happen to be a nerd. Because I have disabilities that impede my ability to do anything other than very slowly, I have a lot of time to listen to audiobooks and podcasts. This suits me just fine.

I make this point because I want to say something that I do not want to be taken as a criticism. If we want to be successful in changing how people behave and become more inclusive of people with disabilities there’s stuff that we need to know and do – and a lot of that is hard work.  There isn’t an option. If we put in the effort to become more skilled at what we do, we will get better results.

Why we resist change that is good for us and others

The fact that we are innately change-resistant isn’t news. But it is glossed over by the frequent celebration of the changes we do embrace. The introduction of the iPhone in 2007 heralded the touchphone revolution which hasn’t slowed down. New fashions in clothing, new cars, new this and new that suggest we are change hungry.

It makes sense that an innovation that improves our survival odds will be accepted. We have adapted to labour-saving devices with a passion. In fact, the whole Industrial Revolution was about labour-saving – but from a cost, rather than a convenience perspective. AI is continuing this tradition by threatening to get rid of more jobs in the name of efficiency and cost saving. Some change is thrust upon us, and some we lap up happily. But we also resist a lot.

There are varying dates accepted on the date of emergence of early modern humans – 300,000 years ago is widely accepted. Civilization is said to have started around 3,000 BCE. The Industrial Revolution started in 1760 and ended in 1839 (according to a source Siri found me on the intranet).

All this is by way of noting that most of human history has been about a very low-key level of change. That’s built into our biology and our brains. We prefer things not to change.

Further evidence of this can be found in what we humans have done to influence our collective resistance to change. We invented religions, education systems, politics, advertising and influencers – to mention but a few. Pretty much everything that civilisation is about comes down trying to make us change how we feel, think and behave – and our collective acquiescence or resistance to those influences.

We are always being subjected to efforts to change us ‘for our own good’ or for somebody else’s benefit – and this we resist with reflexive ease most of the time.

All that said, we are mostly good, kind, caring and inclusive people – just not to everybody. And  we can be downright picky about who we are willing to embrace into our ‘circle of care’. This is entirely natural and good. This is baked into who we are.

So, what’s the problem?

Our social and cultural environments have changed at a far faster rate than our attitudes, beliefs and behaviours have. The imposed pace of some change has created cognitive pressures that make it a threat from which we sensibly want to retreat.

Those who champion certain changes in our culture mostly do so from an intellectual and moral sense of certainty that they are right. And maybe they are. But their passion for changes in our collective attitudes, beliefs and behaviours have not been informed by psychological insight. This matters a great deal because without such insight we assume other people to be as we imagine them to be, not as they are.

If you can’t encounter people as they are, you can’t have inclusion. If you want people to change their attitudes, beliefs and behaviours to conform with the new values and insights you are championing you must engage in skilled efforts to encourage them to change. Resistance to your efforts is not for want of intellectual or moral competence. It is simply inherent in their psychological make up.

For some people, response to new insights and values might be positive and quick. They are disposed, by so many personal life factors to respond that way. Others might have a combination of personal experience, history and culture that leads them to simply disagreeing on intellectual and moral grounds or rejecting what is proposed on what we might call dogmatic grounds. Others might resist change they agree with because the current demands on their cognitive and emotional capability makes anything else feel like a threat.

Advocating for changes in how we collectively feel, believe and behave can seem to us like a no-brainer on intellectual and moral grounds that we have accepted and believe in. But rejecting those changes may seem equally valid to others.

Here we have the options of conflict, coercion, compromise or conversation. When we are possessed of moral certainty the first two are the easy options. Compromise becomes the unhappy art of the possible, always with a preference to activate the first two options. Conversation means more than debate. It means actually discovering the reality and validity of the other person’s situation.

We are psychologically change-resistant because change requires cognitive effort and that’s usually about a threat. If we are loaded up on the demands to survive and support our families, maintain our relationships and endure workplace demands we may not be excited to be more inclusive – even if the cause genuinely activates our sympathy.

Just because something is a morally just cause doesn’t mean we have the cognitive capacity to engage with it – because we may have higher priorities within our personal sphere of responsibility.

The problem is that change agent activists are driven by moral and emotional energy and do not take the effort to remember that inclusion means including those who don’t agree. And they can assume that those not agreeing signifies a want of moral character or intellectual capacity – and are hence moved into the conflict or coercion group.

Inclusion must include those who disagree as well as those who agree but just don’t have the cognitive bandwidth to be actively engaged. That means working harder and smarter to evolve whatever culture you are trying to influence. Kindness is always better than moral passion.

Failure is routine

Efforts at change in organisations fail regularly. Such efforts are rarely predicated on science – psychology or neuroscience. ERGs are regular failures – to the extent that I have been unable to find any studies on them, but they are seen to be ineffectual. There’s a lot of glossy advice on-line about how to set up and run an ERG. Some of it is useful and a lot of it depends on whether the host organisation is super supportive.

There is not, however, much guidance for ERGs who struggle or fail. This has been a passion for me because I became the leader of a failing disability ERG and transformed it. There’s not a lot of use in discovering how to succeed if you don’t also know how and why failure happens.

We fail routinely at change because we have mostly strategies for success based on what we imagine or assume to be so. Now there is no excuse for taking this approach.

Conclusion

Learning why we fail at change is critical, but we must take reflection to a sufficient depth. A useful way of getting to that depth is asking the ‘7 Whys’. This is also called Root Cause Analysis. You can search either term to find an abundance of content. The Wikipedia description might be a useful starting point.

If we don’t think of change as the complex and difficult art it is, we will become accustomed to failure and blame those who ‘failed’ to change rather than taking a square look at our lack of skill and knowledge. There is an abundance of research converted into accessible books, podcasts and articles to guide our efforts at gaining deeper skills, insights and knowledge.

Fifty years ago, social change was driven by morally infused guess work. Back then we got somethings right and a lot of things wrong. But it was enough to make encouraging progress. It was all very hit or miss.

Changing organisation’s culture became imperative to ensure organisations adapted to the world they operate in. This is especially compelling for for-profit entities who live or die by their bottom line. As a result, there has been a lot of research undertaken, and a lot of books and podcasts published. The Harvard Business School not only produces the Harvard Business Review but an array of podcasts. 

One of my favourite sources is The Neuroleadership Institute because it is research and data driven. Its motto is: Change in weeks, not years. A recent show from their Your Brain at Work podcast explores how this might be possible – https://your-brain-at-work.simplecast.com/episodes/the-stuff-of-thought-critical-thinking-in-the-age-of-ai

Here’s a quote from the podcast: “There’s a really really big gap between what people think they do and what they actually do. We call it intent versus impact.

Running an effective ERG is a professional skill set and this is no better epitomised than in PurpleSpace. It is telling that it describes itself as The world’s only professional development hub for disability network leaders.

This is the contemporary reality. Effective change is needed to help us adapt our deeply ingrained habits of behaviour to the novel social and organisational realities that only seem to accumulate. DEI was intended to be one of the ways of doing that, but it seems to have lost its way. ERGs should be playing a far more effective role than they are doing.

We have gone beyond the simple energy of moral certainty to a far more complex challenge for more self-aware and strategic action. We can’t drive change on our terms, only on its terms. We have transited from activism to implementation – from wanting to making. But we haven’t caught up and brought our mindsets into tune with our environment. We have become resistant to the very changes we want.