Category: Uncategorized

Introduction

Over the past few months, I have had the privilege working with ERG leaders – disability and others – though the intersection with disability is a persistent accompanying theme in most cases. 

Leading an ERG effectively is a demanding and tough job. It’s not a case of putting on one’s leadership hat a couple of times a month. It is a passion that is constantly present. 

Here I want to reflect on and celebrate the role of ERG leadership. 

The wildcard role

Most significant organisations these days have a formal DEI team that sits within a defined hierarchy and has a clear status. Now DEI teams have their passions and challenges too, so I don’t want the reader to infer that what I say about ERG leads doesn’t apply to DEI teams. 

Some things do not, however, apply and one of those things is the wild card nature of an ERG leader. 

I have met NSW public sector ERG leads who have been at grades significantly below the usual manager grade of 11/12. This includes 3/4, 5/6, 7/8, and 9/10. Of these grades, typically 9/10s and some 7/8s may lead teams. 

Depending on circumstances it is not usual for staff under grade 11/12 to engage directly with executives. One is generally definitely seen as a subordinate in status, power, influence, and skill. 

ERG leaders must perform key management functions, but without any official standing beyond their role title. And to make things just that little more interesting the members of their ERG are all volunteers. While there may be explicit recognition of the fact of being an ERG lead, all else is essentially contingent. 

Who an ERG leader is is really down to the luck of the draw. Any ERG could end up with a person with substantial proven leadership skills and experience or somebody with nascent potential which may or may not flower during their leadership term. 

Possession of potential plus passion is the mark of a truly interesting wild card. 

The potential isn’t rare. There are always people with potential at lower grades, though some may be stuck there through circumstance or bias. Becoming an ERG leader can unplug that potential and when it is mixed with passion for the ERG’s cause great things can happen. But being a wild card is also a risk.

The art and science of leadership

Doing leadership well isn’t easy. It is an art and a science. Knowledge of the science can be acquired through self-directed learning, training, coaching, or mentoring. The art can be developed only through passion-fueled practice.

Typically, though, leading an ERG is under-appreciated. To be fair, sometimes ERGs bring this upon themselves because of perceptions created when ERG leaders who have the passion and commitment get stuck for want of understanding the science side of leadership equation. This can be more often true of new ERG leaders with no formal leadership experience.

Being an effective leader takes knowledge plus the necessary personal attributes.

Leadership is a function, not a role

In books such as Fearless Leadership by Loretta Malandro (2009), The Fearless Organisation by Amy C. Edmondson (2018) and Dare to Lead by Brene Brown (2018) we develop an understanding that leadership is less a formal role and way more about personal attributes. So, people who are not leaders can find themselves in leadership roles. But equally so, people who are leaders may not find the opportunity to get into a formal leadership role. Happy the days when the two come together.

For ERG leaders whose backgrounds have given them limited formal leadership opportunity and whose status in the organisation is decidedly subordinate, moving into their new role may precipitate a conflict between their passion and ability and their reflex to be responsive to their normal position in the organisation’s hierarchy.

For them, being a wild card is a distinctly uncomfortable and even perilous position to be in.

An intense learning curve

Books like Primal Leadership by David Goleman, Richard Boyatzis and Annie McKee (2001), Quiet Leadership by David Rock (2006) and Leadershift by John C. Maxwell (2018) remind us that the art of leadership can (and must) be continually refined. It is often an ongoing journey of self-discovery and personal development.

For those new to ERG leadership roles settling into that role can be a demanding time, especially if critical guidance isn’t available. While organisations are happy to facilitate ERGs it is rare that there is commitment to supporting leaders to develop into their roles.

Becoming a great ERG leader is a big challenge that those with the passion needed to drive them will meet. But they must also seek out the guidance they need. 

Conclusion

I have been deeply impressed by ERG leaders emerging from the middle to lower ranks in organisations. Their passion for their cause gives them the energy to meet the considerable demands of their roles.

Leadership is a function before it is a role. And whether it is looked at as either, or the happy marriage of both, it must be seen as an art and a science. Natural leaders still must develop the rational skills that give their potential expression of the art the necessary coherence.

Being a wild card isn’t easy, but it is full of great potential if played wisely. This is part of the art of leadership that can’t be learned anywhere but on the job. This is perhaps the most important, challenging, and rewarding insight for any ERG leader to embrace.

There is a future potential for organisations to recognise that ERG leadership in an outstanding opportunity to develop and hone leadership skills, and to invest in supporting emerging leaders.

Introduction

I had a chat recently with a friend who works in the NSW Department of Customer Service (DCS). It is a public service agency whose customer base is the whole of the NSW community. My friend has a deep passion for accessibility, and he thinks about it in ways I find deeply inspirational.

Here are some reflections arising from our chat. I focus on inclusion rather than accessibility. You can’t have inclusion without accessibility – but you also can’t have accessibility without a spirit of inclusion.

Service means different things in different contexts

In one sense all public sector agencies serve their community. They are all services. But sometimes that service is fraught because the service users, or those upon whom the service is imposed, do not endear themselves to the service providers. In other cases, the services provided are more remote from the community. They make the other services possible.

What makes DCS different is that its customers/service users are generally seen in a positive and direct way. I have dealt with DCS often. Its commitment to customer service is sincere. You can explore what it does here – https://www.nsw.gov.au/departments-and-agencies/department-of-customer-service

Because of its different approach it has engaged its internal audit team to assess its services in terms of their accessibility. That’s a strong positive move which reflects confidence in DCS’s willingness to be held accountable.

This is in stark contrast with other agencies which provide services in areas which engage with community members in deeply problematic situations – like police, corrective services, child protection and housing and homelessness. Issues of accessibility and inclusion are no less relevant, but the complexity of these roles is such that it doesn’t lend itself readily to an internal audit assessment. This is not a criticism, just an observation. There are complex reasons why this is so, and its not a theme I can cover here.

In essence you can do some things with the idea of service in one context, but not another. This distinction is important because it tells us a great deal about how we understand what service is, and how we apply that understanding.

Accountability is a problem

Bullying and harassment of staff with disability is an ongoing issue in the public sector. It could, theoretically, be solved simply by having an effective reporting and response mechanism. Reality is different. Our psychology gets in the way of ideals all the time.

There is a huge difference between accountability in the delivery of accessible services in a positive spirit of service delivery and holding staff in leadership roles accountable for the mistreatment of subordinate staff. It should happen, but it mostly does not unless the offence transgresses against norms severely and cannot be downplayed.

In recent months I have been made aware that NSW public sector agencies have been obliged to develop and implement policies related to sexual harassment and bullying and harassment. This misconduct is clearly a breach of the sector’s code of conduct, but instead of strengthening response processes which affirm accountability, the policies are revised – as if the policy is the issue. It isn’t. It’s the failure to act effectively in response to complaints that is the problem.

Service and accountability on a personal level

DCS demonstrates that understanding service in a particular way can make a desire to be accountable a matter of pride. But we don’t see how an organisation operates as a form of service – more a kind of managing a mechanism. The messy business of managing how staff conduct themselves isn’t seen as a service. It is a necessity that is difficult to do well at the best of times. This attitude is changing among organisations who are committed to adopting the latest research-based thinking on how to attract and retain high quality staff.

There is a need to distinguish between managing how an organisation operates and what it does – but please do see that the idea of service applies in both cases. These days staff members are not mere cogs in the ‘machine’ of production but more like the tools (as intelligent moral agents) without whom the business of the organisation cannot be realised. Part of the function of managing staff is providing a service to them – giving guidance, ensuring safety, providing accessible working conditions and so on. 

While staff members may be subordinate in a necessary organisational hierarchy, they are not so when it comes to dignity, status, or value. In days gone by hierarchical inequity also embraced organisational and social status. In a way it still does in the sense that more power/responsibility usually means higher pay which can translate as opportunities to participate in specific social groups. But that seeming inequity is relative rather than absolute – as it used to be thought to be.

There is some interesting thinking on the idea of the ‘servant leader’ in which leadership is an act of service rather than the exercise of power. Please do google the idea. 

The wealth of work on leadership and service to be found does suggest that being a leader/manager is much harder than it used to be. The NSW Public Service Commission released a campaign to support employment of people with disability a few years ago. It included a manifesto which included the phrase: “Today leaders inspire with self-awareness and empathy.” What the campaign lacked was guidance on how that might happen. 

Self-awareness and empathy are not attributes included in selection criteria for manager/leadership roles. It seems that we expect that people in those roles will spontaneously acquire those attributes simply because they are asserted to a good thing.

On a personal level, being self-reflective and self-critical can have limited appeal, unless one is self-motivated in that direction.  A job is generally taken to be a means toward self-fulfilment because of the income earned. It is not necessarily seen as an act of service in itself. This is an important distinction because if we see a job is a means to an end, we assume it to be the same for everyone else. The goal is to get by and get to the chance to be self-fulfilled outside of work.

This makes perfect sense, and in days gone by that was the pretty much rule. There were exceptions, of course, but they were exceptional. These were people who found fulfillment in their work as acts of service. The norm was that the staff member was essentially a ‘wetware’ component in the means of production – whatever the output was. Customer service was a thing that stood alone, externally focused. That was the only kind of service imagined.

Leading with self-awareness and empathy sounds nice. It is a form of service towards those who are led. But to suggest that it will naturally arise is to view how organisations work with great naivety. There will be some for whom such is a natural expression of who they are, but they are in the minority. To get to that quality of servant leadership there must be a cultural commitment to it at organisational level.

Things have changed

In the past few decades, organisations have recognised the need to treat their staff differently. This became pertinent when the idea of ‘knowledge work’ gained a foothold. What that meant was that apart from possessing certain knowledge staff had to be also able to exercise judgement, communicate effectively and be competent in interpersonal relations. The means of production shifted from processes to people in whom knowledge, skills and attributes of character are key requirements.

This change has arisen from changes in social values, reflected in the expectations of staff to be treated as a person of inherent worth and dignity. Disability inclusion has arisen as a theme because of this change – as have other DEI themes.

But what has changed more slowly than the social values has been the capacity of organisations to adapt. They are still locked into the habits of how things have been done since way back when. Staff are still seen as subject to organisational control rather than care. The cobwebs of the command and control mentality still linger in our workplaces and exert their dragging influence.

In a control mentality causing harm to a staff member as a component of the means of production is no big deal, because they can be replaced. With a care mentality causing harm invokes a sense of empathic concern which triggers action to ameliorate the harm and address the cause.

For many organisations this transition is slow. The control mindset is so entrenched and pervasive it is difficult to dislodge. Back in late 2020 or early 2021, before I quit fulltime work, my employer released a new policy on grievances/complaints handling. I was astonished and dismayed to see references to ‘managers’ and ‘workers’. Such out of date language is possible only if the old mindset still endures. I thought the policy persisted in the same old quasi-legal adversarial mentality that forced a separation between the interests of the organisation and the interests of staff. Staff injured by misconduct (for that is the cause of so many injurious consequences) are seen not as people needing care and empathy, but as risks to the leadership ingroup to be managed. It’s the old ‘them and us’thinking and not the ‘we’ of shared care and responsibility that mark emotional and psychological maturity.

The watershed moment

We are in a transitional phase at the level of organisational culture – moving from component thinking to real caring. Our legislation and policy champion caring but our management and leadership recruitment practices still echo component thinking. How do we hit the top of the ridge into a new watershed territory?

Typically, we are dominated by prevailing mentalities which resist the new. We resist investing in the emergent insights because they devalue old authority, and the cost is seen as an impost rather than an investment. We naturally resist change, and the object of organisational leadership should be to work through that resistance, not reinforce it. 

Leadership guides are clear here – you must model the change you want others to adopt. If you want inclusivity, behave inclusively. If you want accessibility, make it a priority in your own conduct. If you want accountability, allow yourself to be held to account.

Businesses live and die by their vision and capacity to adapt and embrace the new. Kodak, once the definitive name in photography, missed out on the digital revolution. It didn’t make it to the top of the ridge.

The public sector has no such imperative to adapt to survive. The worst it may face is limitation in funding and be subject to political guidance of variable merit. As such adaptation to the emergent paradigms about valuing the dignity of staff is patchy – uneven in distribution and quality.

What I love about DCS is that it is modelling the idea of service as a discipline governed by principles and standards. True, this has a primary external focus, but it must have an internal reflection as well. True, this might have an initial focus on accessibility, but accessibility benefits all because it is inherently inclusive. Its something that could infect the whole culture.

DCS also has a cultural steering committee. This is an idea new to me, and one I will explore and write on. In essence such a committee intentionally influences the organisation’s culture. At some stage the culture must shift into care-centric territory in a way that will steadily accelerate the rate of evolution toward workplaces that are inclusive, equitable and diverse – and compassionate, caring and kind.

You can’t be outwardly caring while remaining internally locked into component thinking. It’s been tried and it doesn’t work. Authenticity is necessary – if only we could see that at every level of our organisations.

Conclusion

Shifting from a control mindset to a service mindset is a stage along the evolutionary pathway, and what we can do to move it along is important. 

A friend, Ernesto Sirolli, the pioneer of enterprise facilitation in the 1980s, wrote of the importance of doing enterprise facilitation as if “people really matter.” (see https://sirolli.com/philosophy) That was my first encounter with a formal idea of a methodology for doing anything in which the individual mattered most. The enterprise facilitator served the client. It wasn’t a case of an expert delivering instruction and information. It was a relationship of care.

These days there is abundant evidence that staff who are cared for work better and harder than those who are not. A diverse and inclusive workforce isn’t just nice to have because legislation and policies say we must. It is more productive and more stable. The cost of making this happen is an investment.

That cost isn’t just money. It is time and attention. There’s an intellectual, emotional, and cognitive effort required. There’s also a philosophical shift that is necessary.

There is one thing that is blindingly apparent in organisational development over the past few decades, and in management and leadership in particular. It is that there is an expectation of higher levels of psychological maturity as a necessity among knowledge workers. This includes emotional intelligence. We are not going to see such qualities predominant in our workforces unless leaders and managers embody them and model them. 

We will get leadership that is routinely self-aware and empathic only when those attributes are intentionally sought in recruitment and fostered development practices by leaders who already possess them.

We are disposed to be biased toward those who are like us. That can cause problems for how we realise our ideals for diversity at times, but it also gives us insight into why bullying and harassment of staff with disability remains a problem despite all the fine words about how such conduct “will not be tolerated.” It may also explain accessibility is still not assured in procurement practices. But bias can have positive outcomes when the right people are the decision-makers.

It is time to reimagine the idea of service as something that applies to every aspect of public sector employment and not just in engagement with external customers/service users. Leadership as service, not control, is more grown up, more emotionally mature.

Finally, organisational workplaces are communities in which intense human relationships are formed. A relationship between a leader and a subordinate staff member is more complex than we mostly understand. There’s an imbalance of power often between social equals expressed in ways that are emotionally stilted. When that power imbalance is inexpertly handled it can trigger biases that lead to exclusion and conflict and eventually unintended psychological harm.

The idea that the ‘higher’ serves the ‘lower’ is alien to many – and yet it is fundamental to our best ideas on leadership. The experience of exclusion, bullying and the persistence of inaccessibility familiar to many staff with disability wouldn’t be a thing in a servant leadership culture.

This week I was obliged to pay $1135 for a major ‘service’ on my car – a 2012 Toyota Aurion. I paid it gladly despite the pain. I have deep affection for the car, gratitude for its performance and reliability, and pleasure in driving it. It is ‘serviced’ regularly. The cost of servicing the car is an investment in my ability to be mobile. I look after it in a pragmatic respectful way. I make sure it performs well and is safe to drive. Now if I could treat people as well as I treat my car… 

Introduction

What triggers and perpetuates our capacity to engage in exclusionary behaviour in the face of earnest assertions that such conduct will not be tolerated? It is not as mysterious as it may seem.

Most of us are kind and caring, although we don’t always make this known to others readily. Some folks are not. Mercifully they are not common in our organisations. Though there enough of them to make their conduct dangerous to vulnerable people.

It is tempting to see failures to act inclusively and find reason to assign blame. Efforts at promoting inclusion are often information-based. There is an old myth that if we give people information, they will adapt their behaviour. When this inevitably doesn’t happen, we assume a lack of interest and caring – and thus we see a moral failing. We can feel excluded from a moral framework that affirms our human value – and it can feel uncaring. It isn’t, or rather, it very rarely is.

In advocating for disability inclusion, I was, early on, frustrated and bewildered by the way organisational leaders, who were so enthusiastic to my face, so often failed to follow up. The sense of righteous urgency I felt ran into resistance and obstruction, a lack of accountability, and an unreflective insistence that certain conduct “will not be tolerated” while evidence it was being tolerated was everywhere abundant – and apparently ignored.

We got changes and improvements by persistent, insistent effort. But these changes were not as great as sought, nor as timely. Perpetrators of egregious conduct against staff with disability remained unrebuked and unrestrained despite what seemed to be reasonable efforts to intervene.

What was going on? When I quit my full-time job in June 2021 after 19.5 years, I finally had the time to explore this question in depth. I spent the next 18 months in close to fulltime research. Below is a summation of where I am up to in the quest to understand. I wanted to know if I was diagnosing the problem correctly.

The question is complex

Large organisations like government departments are novel developments in human history. They are evolving a behaviour we described, a few decades back, in terms of organisational psychology – and as our knowledge has advanced this has fragmented into myriad specialisations. 

Organisational behaviour, and the culture that is generated is constantly evolving in response to social, economic, and technological changes.

A significant social change for us [and here I am thinking specifically of NSW, though it is generally the case] is our continuously changing pluralistic multi-cultural community. Government commitment to ensure that the public sector workforce reflects the community it serves is an essential, but novel goal. This also comes with an obligation for mutual respect and inclusion within the workforce – a necessary expectation. But it is one that places an interesting burden of intentional behaviour upon staff. Exclusions and even enmities that might be normal in one’s private life should not be continued in the workplace.

Organisations and communities are made up of individuals and groups. This brings in individual psychology in two important ways. A certain amount of our behaviour is hardwired and inherited from our primate ancestors. We have reflexes and biases built in. Then we have our individual experience-based behaviours. These are complex and influence every aspect of our lives – at home and at work.

Let me summarise all this briefly:

• Our organisations are novel and evolving forms of behaviour.
• Our community is a novel and evolving form of living together.
• Our workforces and novel and evolving forms of working together.
• While we are generally people of goodwill and kindness these qualities are not uniformly distributed, while there is an expectation that a public sector workforce should/must exhibit these qualities in a uniform way.

The goal of creating an inclusive workforce which is universally safe for the diverse array of people who make up our community is a necessary one. But we have hugely under-estimated the effort needed to achieve it. We need to step back and review our beliefs in the light of contemporary research. This isn’t an easy task as it is scattered through books, articles, and podcasts.

Exclusion is a feature?

It is. Inclusion is intimate. We reflexively don’t reject those who look/behave like us, but neither do we actively include, unless they are known intimates – like family members – and even then, not always.

In terms of include/exclude options we are more disposed to exclude. That’s safer on the whole. This is a reflex that goes way back to when survival was tough. But its not all black and white. We will exclude strongly or mildly, motivated by fear or strong aversion all the way down to mild dislike or lack of interest.

We overcome a reflex to exclude by re-assessing the individual or group in a new context. I was born in Northern Ireland. My father’s family were staunchly Protestant and militantly anti-Catholic. When I was growing up in western Victoria, while my father joined the Protestant church and perpetuated his loathing of Catholics, I thought that was a dumb attitude in a small country town. I had schoolmates who were Catholics, and I valued their friendship over any nonsense my father was into. His beliefs and passions didn’t fit my context, and I had no motive to perpetuate them.

Some changes are simply down to intergenerational changes in context, like mine. The young adapt quickly. But sometimes cultural aversions are deeply rooted and do not fade quickly. There can be many motives to exclude that begin as a cultural foundation, and which may be added to by personal experience. This is especially the case with intergenerational trauma, which may lead to complex PTSD being experienced in a home or community setting.

This may seem like it has nothing to do with disability inclusion, but it has a lot. Many cultures exemplify the unblemished. We may be heirs to cultural values that do not honour disability as being just part of the spectrum of being human.

Our instincts are to favour those without disability when it comes to choosing a mate. But if we have close family members with disability our responses may be very different. We encounter caring and inclusion up close.

While we can recognise that exclusion is something we are hardwired to enact, the reasons for doing so may not be valid all the time.

For example, advances in technology, such as JAWS and screen readers, mean that blind people can no longer be justly excluded from roles they were unable to perform in in the past. Activation of an exclusionary response must now be modified by insight into the context and by extending personal inclusion to the individual.

There are multiple reasons why disability might trigger an exclusionary response. They can be contextual, cultural, or personal. Because of the changes in our cultural values, technologies, and social obligations we must be careful in running with any impulse to exclude, lest we are unkind and unjust.

Disability and intersectionality

People with disability are distinguished from other ‘diversity groups’ who are subjected to exclusionary and discriminatory behaviour because we add the attribute of requiring accessibility. In that sense people with disability can have an impact that benefits all people, whether they are a member of a ‘diversity group’ or not, because improved accessibility can help us all.

However, we must not see people with disability only in terms of accessibility. We cover the spectrum of human attributes and identities. No ‘diversity group’ will have no people with disability as members. As a result, inclusion challenges may arise from a ‘diversity group’ attributes, or identity, as well as the simple fact of living with a disability and the accessibility challenges associated with that disability.

The difficulty of changing behaviour

Changing how we behave is more about motivation than information, as anybody trying to break a bad habit knows. Motivation driven by goodwill and compassion is better than feeling forced to comply, although, to be honest, fear can be a great motivator to change, as well as stay the same. So, kind persuasion is better than policing.

Changing behaviour takes effort. It imposes a cognitive load on our brain. It requires attention, repeatedly, and sometimes constantly. The extra energy required isn’t just mental, it’s also emotional. And for that extra energy to be applied it must be redirected from somewhere else. That can include feeling angry or fearful. We change our behaviour because the new behaviour serves us better than the old, and the new thoughts and emotions are better than the old ones.

Most staff work hard at jobs that demand their attention because of workload and the nature of the job, and they may have private lives that may also demand their emotional attention to a very high degree. They don’t have a lot of extra energy to put into being more inclusive, no matter how much they may want to.

Change on a personal level, even when we are willing, may take much longer than we hope for.

In-groups and out-groups

We all form in-groups and out-groups – the people with whom we feel we belong, and those with whom we feel no great connection. Often these groups are formed unconsciously, because we are more inclined to belong to a group whose members are more like us. We can thus unintentionally exclude people, not because we don’t like them, just because they are not sufficiently like us for us to feel comfortable about bringing them into our in-group.

There are, of course, intentional exclusions from group membership because of biases or fears that are not based on reality, and which are unjustified by any measure of fairness.

In-groups and out-groups also occur because of organisational status. Managers and executives may prefer each other’s company over their direct reports. This becomes a problem when it comes to holding a manager or executive to account over discriminatory or abusive conduct. It can seem like in-group disloyalty to hold one of your own to account, whereas disciplining a direct report is much easier.

The challenge for in-groups is to become more self-critical and to set high standards for their members. This is especially the case where the in-group’s organisational status gives them high influence in setting workplace culture and maintaining conduct standards.

Leaders lose their capacity for empathy

Researchers have been discovering interesting, but unsurprising, truths about being in charge. Leaders’ and managers’ capacity for empathy decreases with increase in their power and influence. In some sectors a lack of empathy was thought to be a good thing. Employees were no more than parts of the system of production and could be discarded when necessary.

This is another instance of what we think is a bug being a feature. In large organisations, like an army, too much empathy at the top will impede operations – if the general cares too much about the foot soldier for example. On a personal level I am all for lots of empathy in armies. But I do recognise why this might be a problem in the face of awful necessity.

However, government departments are not armies, and their workforces are not soldiers. The loss of empathy among those at the top has the potential to injure staff who are subject to bullying and harassment, exclusion, and other forms of discrimination because there is little empathic motive to stop it.

The risk is that those in charge do not invest the effort needed to understand the challenge to make inclusion a reality through intentional efforts. Inclusion becomes a peripheral matter to be addressed when the ‘real business’ is taken care of. But that’s when a workforce’s capacity to respond to change is already taxed heavily.

Declaring that discriminatory conduct “will not be tolerated” is pointless when the will to be intolerant is weak, and the means enact to a response to that discriminatory conduct are scant, unevenly, and ineptly applied. Misconduct by leaders in relation to their staff seems rarely to be called to account.

Yes, progress is made, but against a headwind of ingrained habit, reflex, bias, and little insight as to why that resistance persists.

There are strong arguments based on contemporary research that a safe and inclusive work culture boosts productivity, improves performance and increases the retention of skilled and experienced staff. From a ‘return on investment’ perspective, ensuring the welfare of staff should have high priority as part of the ‘real business’. 

Conclusion

I do not despair of the slow pace of change because I have been instrumental in speeding it up. We can do better by being informed by authentic, strategic and intentional insights, so we do not waste precious attention and willingness to act on efforts that are not productive.

The worst thing we can do misdiagnose the cause of resistance to the change we want to create. Misdiagnosis leads to the wrong treatment. The consequence may not be terminal, but it will still be injurious.

The NSW Public Service Commission is, I believe, requiring agencies to develop a bullying and harassment policy. Clearly bullying and harassment is an active concern, and staff with disability are disproportionately the ones most affected.

But these policies aren’t about preventing bullying and harassment, otherwise you’d think they’d be called a preventing bullying and harassment policy. This would, you’d think, make much more sense. The problem has been misdiagnosed and the treatment will be futile. The NSW public sector code of conduct forbids bullying and harassment. That’s a policy.

What can you do? Please think about what I have written here. I am not claiming it’s the full answer, but it’s a good start. We have only so much time, attention, and emotional energy to invest in bringing about the changes we want, and there are a lot of folks who are sincere allies with the same limited budget of time and attention. To make desired changes stick we need to understand why there is resistance and set our sails accordingly.

The challenge is to take a novel and complex reality for what it truly is and shape our efforts to get closer to our goal/ideal in the most effective and efficient way.

Google ‘Sailing into the wind’. We can still make good progress into a headwind. It just takes knowledge and skill.

Introduction

I take early morning walks at Wentworth Falls Lake in the Blue Mountains. There’s a toilet block there with a few design flaws in terms of accessibility in my case, but it’s okay. 

There are 2 male cubicles. One is ambulatory. The other is not. It is wider though. That means the ratio of ambulatory cubicles to regular ones is 1:1 – far higher than you’d find anywhere else. 

But why both cubicles are not ambulatory is the thing I want to discuss here. 

Toilets are not my favourite topic. Its just that an absence of inclusivity and accessibility can be limiting and sometimes distressing – and very exclusionary.

Why inclusive design matters. 

When it is possible for a single design feature to be in service of many, most, or all people, picking the all option makes the most sense. Of course, all is an ideal that may not be met – but it’s good to aim for it. 

For example, a sliding car seat can meet the needs of all but the very very tall and very very short. But within the practical limits of car design, it shoots for all. It costs more to make a sliding seat than a fixed one, but the benefits are worth the cost. 

Why wait more than you have to, or can?

There are times when there is a high demand for toilet cubicles and when this happens people with no disability will use accessible toilets. It’s bad enough, absent an ambulatory cubicle, that one may need to wait also because for some reason it’s okay to make an accessible cubicle do double duty as a baby changing station. Still, when you don’t have an accessibility need, the options are 100%.

But the flip side doesn’t work if you need the accessibility features. There is often only one option – and access to it may be impeded. 

These days this becomes an even more pressing issue because toilet breaks have become havens where a 20-minute head break on one’s phone is not uncommon. Time flies when you are having fun, but not when you are waiting on the person having fun.

So why not?

Why did the council who constructed the toilet block at Wentworth Falls Lake not make both cubicles ambulatory? It wouldn’t have cost much extra to do so. 

The answer is a fixed mindset rather than a conscious decision. Having one ambulatory cubicle seems to be not a minimal requirement, but the requirement on the presumption that this represents the least number to meet the percentage of users likely to need such a feature. You’ll find one ambulatory cubicle among five or more most places.

In this thinking is that an ambulatory cubicle is added because the others are exclusive, rather than inclusive (pause, by the way, to reflect that exclusive is often a term of privilege). But an accessible cubicle is inclusive only if it is available for use. 

It’s not uncommon to find the ambulatory cubicle is occupied by a person who does not need this feature while other cubicles are vacant but unusable to the person who needs that accessible feature. 

The absence of inclusive/universal thinking is what perpetuates fixed and narrowly focused thinking. It isn’t that the council did anything wrong or mean. What it did was right in the context of complying with standards. The standards are not, however, inclusive on a practical human level, even though that’s the intent.

The importance of universal design 

If all cubicles are accessible to ambulatory standard, we are all on an equal footing. If only one is, it can magnify the inequity. It may cater to the minority who needs the accessibility feature, but because access to an accessible cubicle is not assured at the same rate all cubicles are accessible to able-bodied people there is no equity of access.

Of course, a solution might be to ban able-bodied folk from using ambulatory cubicles. But who would police that? Telling an able-bodied person that they may not use an ambulatory cubicle when they have an urgent need would not be kind, and they would not comply. This is a persistent issue for fully accessible toilets. When you gotta go you gotta go. It would be nice if this was a universal and realizable right. This also applies to those 20 minute head breaks, apparently.

But nobody needs to tell a person with disability they cannot use a regular cubicle. Yes, some folk cannot get off a toilet seat without aids, and asking a stranger or workmate to help isn’t really a desirable thing to do, besides you can’t get up to unlock the door. 

An accessibility feature in all cubicles is the only fair thing. 

You’ll find this when you go driving around NSW. There are roadside toilets that are single fully accessible options. That’s a mathematical logic – if one – only go universal. So why not go 100% ambulatory accessible with all cubicles to get as close to that same universality as possible? Its an equity issue, not a math one.

Of course, retrofitting current cubicles to make them all ambulatory accessible isn’t always practical. There are size issues to be considered, given you need room to fit supports. But if you advocate for a greater level of inclusion in the loo, don’t be quickly put off by protestations of impracticality. It ain’t always so. Ask for compelling evidence. Sometimes a can’t do attitude masks a won’t do one.

Conclusion

Universal design not only makes sense, it establishes an argument for a sliding scale of possibility. You start off with all and if that’s not possible, go to most and then finally to many. 

Exclusive design is a conceit and should be reserved for private settings for people who know nobody who might need an accessibility feature – including themselves – as I found out in 2009 when I returned home after 10 months in hospital to realise just how exclusive my home was.

There are good reasons to make private and shared domains inclusive – we never know when we, or folk we share our lives with, might need these attributes. There are good reasons to learn to think in terms of universal/inclusive design as the standard mode. Here’s a good place to start https://centreforinclusivedesign.org.au/.

Equal loo rights are for all of us!

Introduction

GBS has left me with weak and impaired grip in both hands. My fingers and thumbs have impaired movement. When it comes to cooking and eating what I can hold and manipulate with ease and comfort is limited. 

Sometimes there is nothing worse than having to buy an obvious disability aid because it screams disability as a constant reminder and is a signal to observers. I have a thick-handled spoon that does that. I haven’t been able to find an alternative spoon design. And sometimes there simply isn’t any option but a specialised disability aid.

Most kitchen and dining equipment can’t be modified away from being what they are. I found this with frying pans where the only thing I could do was be careful about the shape of the handle. I recently bought a small frying pan with a handle that was too smooth and round for my grip. I couldn’t tilt it to transfer the contents while it was hot.

I also learnt this lesson when my housemate bought a new electric kettle with a handle that arched over the top. The old kettle had a side handle I could grip. Now I have to tilt the new kettle from the edge of the sink to fill my mug. I can live with that work around, but it will probably have to have an accident so I can replace it with a side handled model.

Over the years I have been acquiring regular things that suit my accessibility needs to a high degree. Below are a few favourites. 

If you don’t have a personal need, you may know others who do.

Victorinox 11cm serrated steak knives

I bought these knives before GBS. I haven’t used a regular knife since. The handles are thicker than regular knives and are made from some kind of plastic that gives a non-slip grip. The blade has some give that I didn’t value until I tried a regular knife. The knives I have are well over 15 years old and still cut better than a regular knife.

I have tried regular knives, including regular thick-handled steak knives, but none meet my needs the way the Victorinox knives do. Interestingly, thick-handled steak knives don’t work for me the way the thick-handled spoon does. The grip is different.

Ultra-light titanium plate from Alton

This is a 22cm wide and 2.8 cm deep plate that weighs only 132g. I struggle to hold a ceramic dinner plate or those confounded wide bowl-like plates that are popular. Its bad enough trying to carry one empty but is seriously risky with food in it.

This titanium plate is a little smaller than I’d like for an all-purpose plate, but it still meets 90% of my needs. It’s so light I can carry it with a decent amount of food on it with no worries.

The plate isn’t cheap at $49.99, but its unbreakable and its ease of use because of its weight make that money well spent.

Ultralight Titanium Plate

Double wall titanium bowl

I found one on Amazon. There were several designed for camping with widths between 12.5cm [Boundless Voyage $36.00] and 14cm [EPIgas $46.27]. There is a Snow Peak bowl with seems to be somewhat larger, but the size isn’t stated. The price [$84.54] is the main hint that it may be wider and deeper. 

The bowl is very light, and the double wall insulates from heat and cold. I decide the cost was worth it to have a bowl that was easy to carry when loaded, easy to hold, and unbreakable. The texture, too, reduces the risk of slipping from the hand.

Ultra-light cutting board from Alton

Cutting board come in all shapes, sizes and weights. Because I have to sit on a chair in the kitchen, I am often reduced to putting a cutting board on my knee. My housemate prefers cutting boards that are thick or have stubby legs. Reaching the bench top from my chair comfortably means even an extra cm can be a problem. 

The Alton cutting boards are made from food grade HDPE and come in 2 sizes – 21cm x 14 cm and 29cm x 21cm. They are at the most 2mm thick. I bought the larger one. It is stiff but not rigid. It is fine on my lap for a lot of things short of vigorous cutting and chopping. A rigid board is needed for that.

Ultralight Cutting Board

Conclusion

Impaired grip and manual dexterity are a pain in the butt. It is astonishing how many things are difficult to access or use without some kind of tool or an alternative design. I have written earlier about my climbers’ knife which is my primary accessibility tool.

Some regular things are great accessibility aids because they are designed to solve functional problems. Like the way my climbers’ knife’s is designed to be opened wearing gloves and hence is kinder to impaired fingers, camping food preparation and dining equipment address weight and robustness issues that can be translated into serving the needs of people with disability.

We must remember that activities that require significant ability create tools that also serve the needs of people with disability. They are often designed for ease of use under less-than-ideal conditions. There is a good feeling that comes from using a well-crafted ability-based tool or utensil that meets the needs of a person with disability – as opposed to relying on disability specific aids. I can live happier if all I need is only one thick-handled spoon.

Go for good design first. We must learn to think in terms of universal and inclusive design when we evaluate how useful something is. This is an ongoing opportunity. After buying the frying pan, I became more conscious about the shape and texture of handles – and now, of course, the position.

Also, let’s not think that just because a person has a disability the solution to their need for access or inclusion is an adjustment or an aid. It might just be better, more inclusive, design.

Introduction

In a couple of earlier posts, I explored what can go wrong and right in a job interview when the candidate experiences anxiety. I looked at the ridiculous ‘pressure test’ scenario of having 15-20 minutes to prepare responses to 4-6 questions.

I entirely get the heroic game-playing types who laugh at the sensitivity of candidates who don’t handle interview processes well. I am one of those folks who don’t do interviews at all well. The derisive observation “If you can’t handle the heat, get out of the kitchen” has been employed as a justification way too often. But job interviews are not a game or a competition testing for attributes not related to the role. 

This dismissive attitude has a fatal flaw as an argument. Most roles don’t rely upon this pressure scenario. In fact, they are more likely to rely upon well-researched, well though through, and calmly presented evidence. There are roles and situations when rapid responses under pressure are absolutely necessary. I am not denying that. But it is not the norm in the public sector that such capacities are preferred above calm, rational, well-researched and well thought through responses.

I have been an awful candidate many times. I have gone into interviews with several pages of incoherent scribbles that represented a needlessly frantic efforts to get down what I thought I wanted to say. I don’t know why I flip out. Ninety per cent of the time I knew the role inside out. I should have been the obvious candidate. But I failed.

A large part of the problem is recruitment practices are really bad. I spent 5 years in recruitment, and I believe that competent professional recruiters are way under-valued. The NSW public sector, along with many others, uses a localised DIY approach in the mistaken notion that it cheaper. That’s debatable. A single instance of recruitment costs no more than the time the panel members put into it. But the cost of the consequences of not getting the best candidate is not assessed. Some readers will instantly understand this.

I want this out of the way because what I want to argue here isn’t about making recruitment better, only fairer – and even then, to an uncertain degree. I spent 5 years in recruitment decades ago. It was awful then, and I have seen little improvement since. There are good reasons why this is so – and none of them give any hope things will get significantly better. We have incremental improvements, for which we must be grateful. Over time they will add up to a fairer system for people with disability.

The Interview from hell

A friend awakened me to the madness of the current practice. He went for a job that you’d have thought was written for him. To look at his CV you’d probably offered him the job on the spot. But the interview had several problems. The first was that the questions were very poorly crafted. All had two response demands, except one, which had three. Let’s figure this. There were 6 questions which had 13 response demands. 

My friend had 20 minutes to read the questions and prepare his responses. that’s a shade over 1.5 minutes to read, analyse and develop a response to each response element. Seriously? Yes. 

He has a diagnosed ‘high functioning’ anxiety. He can’t fairly be expected to deliver a measured response to the questions under that time stress. He isn’t stressed in his performance in his role. In fact, he is highly regarded. But he went to pieces in the interview.

He raised an interesting question when we reviewed his experience. Why was it necessary to create such a stressful environment at an interview? It was a perfectly rational question. I had no answer in defence of business as usual. It had been a long time since I had bothered to think about recruitment practices at a deep critical level. I had gone 2 decades and through at least 10 different roles without having to compete. I had competed for, and failed to get, three roles in that time, but none were critical to me.

A lot of people interview badly, including many highly talented folks. A big reason is the stress generated by the interview question preparation stage, and then being quizzed by panel members who plainly are not experienced in recruitment. In recent years I have been a ‘independent’ with disability on panels run in copybook professional ways by convenors of impressive skill.

A rational approach to recruitment – toward a fairer opportunity.

Recruitment is hard to do well. In my recruitment days I discovered just how challenging it is. Getting the right person for a job can be tricky. In the private sector you can take more flexible and innovative approaches. In the public sector there must be a uniform approach that gives everyone an equal chance. At least that’s the theory. The reality is often very different.

Having a standard recruitment method might work well if interview panel members were assuredly skilled at the job. This is rarely the case. Being on a recruitment panel should be a skilled role. But mostly it’s a DIY affair with a hit and miss outcome.

For a candidate with disability this means that are several potential pitfalls – the pressure test scenario of being given interview questions just before the interview, interview questions that may be poorly designed and a panel which may be biased as well as inept in assessing candidate suitability.

Ideally recruitment panels would be specialists with the required skills, but that’s not going to happen because of the cost. Consequently, we must think about what can be done at a realistic level.

I want to focus on the benefit of ensuring questions are provided at least 3 days ahead of the interview – but for everybody, not just the candidate with disability. Why?

Getting the questions ahead of time addresses issues for candidates with a range of disabilities – but it also confers an advantage. There’s time to research the response and to craft a well-organised response. But there is no good reason to address an issue and give an unfair and unintended advantage at the same time. If everyone gets the questions ahead of the interview the problem is solved. The issues have been addressed and no advantage has been given. 

Okay? Apparently not.

The rule of unreason

I think most people with disability will agree that seeking fair access to an opportunity to do their best should not include being given an advantage.

I though this idea was worth sharing, so I wrote to the NSW Premier about it. A week or so later I had a reply from the NSW Public Service Commission nixing the idea. The gist of the letter was that if everyone got interview questions 3 days in advance that would be a problem. But if candidates with disability did, that would be an ‘adjustment’. There are several problems with this.

The first is that an ‘adjustment’ is necessary only when a situation or practice is not inclusive. It’s a ‘fix’ while the non-inclusive matter is made inclusive. The goal is inclusivity, not the provision of work arounds. So often an adjustment turns out to have universal benefits. A ramp put in for a wheelchair user benefits anybody unable to use stairs.

If we see the interview question pressure test as stairs, we can see the getting the questions 3 days in advance is like a ramp. You can still cram your interview prep into 20 minutes if you wish. Not everyone can, but all can get to the same destination.

The reality is that many people who would not identify as having a disability are equally disadvantaged by the pressure test situation. This includes those who wish not to say they have a disability, those who experience anxiety reactions to interviews but think that’s just normal, and people experiencing stress for a variety of reasons [work related or personal causes].

The objection to this idea seems to hinge upon an assumption that the interview prep pressure test is a good thing. In fact, it confers no benefit at all and skews interview outcomes toward people who do well under such a pressure scenario – and these [as we all know] are not always the best fit for the role.

This objection is routinely raised by people who oppose making practices and environments more inclusive. This thinking includes assuming that being obliged to ask for an adjustment is an adequate response to a non-inclusive situation. 

Conclusion

There’s a lot of work to be done to make recruitment processes fair. The fact that a candidate can ask for an adjustment is a genuine advance. But it draws attention to disability, which can trigger biases and misconceptions. This is certainly the case with psycho-social disabilities which have no impact of job performance.

An inclusive practice is one which accommodates the needs and capacities of most people [I am allowing that none will be perfect]. The development of inclusive practices can and should trigger a rethink of previous business as usual practices. Resistance to changing how we think and act is normal, but it’s not defensible as a sustained response – it’s just hard to do.

I invite you to grasp two take-aways:

1. Know that you can ask to have interview questions in advance to address any aspects of your disability that impede your ability to perform in an interview prep pressure test.
2. Campaign to make it the standard practice for all candidates – so everyone benefits. This is the ‘solve for one, extend to many’ principle of inclusive design. 

There are other challenges to address before recruitment practices are as inclusive ss they can be. Specialist recruiters would be my ideal. But in the public sector that’s unlikely to ever be a reality. Hence, we need to look at one challenge at a time. The 3-day prep challenge is achievable and will make a critical part of the recruitment process inclusive for all.

Introduction

I have been fascinated by the problem of exclusive [non-inclusive] conduct by many folks who would seem to be otherwise inclusive. It has different dimensions and degrees of manifestation – from inaction to obstructing to active acts of exclusion.

Here I want to offer a few thoughts on my effort to make sense of this.

Our instinct for inclusion

Deep in our primate nature is a profound instinct for belonging. Upon it our psychological wellbeing depends. We crave connection, acceptance and having a sense of belonging. Many of our deep psychological troubles arise from that instinct to belong being denied its natural and full expression – or is betrayed. When ‘one of us’ denies us, or injures us, we are harmed at an existential level.

When we belong, are embraced, and included, we are happiest. This instinct is the foundation of our impulse to be inclusive and nurturing.

Our instinct for exclusion

Our impulse to nurture must include a protective impulse to exclude those who might be a danger to ‘one of us’. This is an essential instinct – to keep threat at bay and ensure the safety of our core community – and our individual sense of self.

But what we define as a threat can be based on beliefs, memories, traditions, habits, and cultural conditioning. We can also find the roots of aversion to disability in religious and historic traditions where the celebration of the unblemished was a fundamental ideal of perfection that applied not only to representatives of the divine but to those offered in sacrifice. On a human instinctual level, the unblemished and unimpaired were favoured in the mating contest, and the contest for status in a community. 

We can and will exclude for deep, mostly unconscious, reasons that resolve some sense of threat we feel. This is why we have ‘anti-discrimination’ laws. But the problem isn’t that we discriminate [it just means making distinctions – and choices based upon those distinctions]. 

In our haste for snappy shorthand terms, we have left off ‘inappropriate and unjust’ to describe the forms of discrimination we abhor.

So, we can see that someone that triggers our protective impulse to exclude may be activating a response that is now neither fair nor appropriate – and which may actually contradict our intent to include.

The novelty of complex pluralistic communities

Not since the Roman empire have we lived in communities so rich in cultural diversity that have taxed our ability to widen the embrace of our sense of ‘one of us’ and question our sense of who is or is not a threat.

Essentially allied to this influx of people from diverse communities we have also opened up to members of our own community whose attributes have previously excluded them from our embrace as ‘one of us’.

Our communities are now experimental settings for the wider evolution of instinct to nurture – to expand the embrace of ‘one of us’. But to make this work to its highest potential we need to bring our protective and exclusionary instinct into conscious awareness to ensure they appropriately activated – in line with contemporary values.

In a sense what we call ‘discrimination’, exclusion, is triggered by the application criteria for exclusion that are not considered consistent with the values necessary for a successful complex and pluralistic community.

The choices we make

The evolution of our contemporary culture isn’t a simple or easy business. It takes deliberate effort – because we all have exclusionary biases. Depending on our personal histories, responding to those biases, and reducing their impact can be more difficult than for others – but nobody has it easy.

Advocates for inclusion, seeking to activate nurturing impulses, can make it harder by introducing blame for inaction or perceived slowness of response. That attitude can trigger a protective response and make exclusion seem justified. No body wants to be blamed for responding to unconscious impulses.

We are all free to agree or disagree with the proposition that the evolution of an inclusive complex and pluralistic community is a good thing. There are many who do not – for reasons they feel are entirely valid. However, when it comes to being a member of an organisation’s workforce there cannot be a justified conflict between the organisation’s values and the values of members of its workforce. There must be alignment to ensure integrity and accountability.

Conclusion

I think that by understanding that we are all driven by essential nurturing and protective instincts is important. Finding the right balance between the two is essential for our sense of wellbeing – psychologically and morally.

But it is equally important that we know we are also free to choose whether we agree with the values that are needed to evolve a functioning complex and pluralistic culture – whether that’s our community at large or the organisation we work for. Inclusion’s not for everyone. Those who disagree are free to do so, so long as they do not act deceptively and misrepresent their non-conformity in a culture that champions and celebrates inclusion.

There will be those who support inclusion but struggle to match their reality with the ideal. That’s most of us [me included]. We share the aspiration and struggle to grow into the ideals we agree are worth our effort. We must be kind to our allies, and not mistake them for opponents. And we must be kind to our opponents too – so there is a better chance they can become allies.

Introduction

I have touched on the idea of idealism several times. The ideal of the beautiful and the unblemished can be found in the Christian Bible and in Greek culture. I have no doubt that when it comes to the gods, their representatives and sacrifices are universally expected to be ideal.

But we are dealing with human reality which cannot be distorted by classical allusions to perfection. We are not dealing with sacrifices either – at least not intentionally.

There is sound evidence that physically beautiful people are treated much more favourably than those modestly endowed with physical appeal. But if we examine our primate nature more carefully there are other more powerful signals of success. In males that includes aggressiveness and the ability to build alliances, for example.

Ideal humans are rare. You don’t often find handsome, intelligently aggressive men who are great at building alliances. They are mercifully scarce. [I say that because an overabundance of them would make our reality a constant battleground] There are a lot of almost who strive to fill the bill to varying degrees of success. The rest of us merely dream of being that good – or so we are induced to think.

A minority of any community meets the criteria to be assessed as members of the ideal elite – the beautiful people – the god-like. And yet we have the template of the ideal tattooed upon our psyches as if it had real meaning for us. It doesn’t. We are mostly blemished in some way

Despite this we think in ideals – and in averages – as if the ‘average’ person is an ideal of all people in a physical sense. It is guesswork. In a tribal setting without fixed infrastructure, it may have been possible to accommodate individual needs. In a massed population with a built environment with costly infrastructure that has to cater to everybody the easy thing is to go for averages. But averages, like ideals, don’t exist in the real world.

The seating problem

These days I care about seating because I need to use it way more than I have done in the past. I care about where it is, what it is made of, and how high it is.

Here’s a quick scenario. I am walking in a park because that’s where there is an accessible pathway. There are bench seats nicely spaced. They have nice timber slats that stay wet after rain, and they are low. I need a break, so I sit. In the summer the seats are dry but are in full sun.

Did I mention they are low? I am tall. Getting out of a low seat can be a bit of a problem for tall people with mobility disabilities.

I live in Katoomba. Down the whole length of the main shopping strip, I don’t think there’s a single bench seat that’s under cover. Clearly the seats have been placed there for a purpose – an identified need. But that need is considered active only when the weather is dry. You can sit on the seat in the rain and maybe avoid getting a wet bum if you have the right kit.

But here’s the point. Installing a seat is half the solution to the problem of where to sit if you need a break. The other half of the problem is ensuring the seat is usable all the time.

I think the problem comes down to a sense of idealism – ideally you don’t need a public seat to sit on, so those who do are a bit of a pest – so we’ll stick a seat here and there because we have to. People who are not ideal are reluctantly catered to. We have to spend extra money pandering to their lack of ideal attributes, and that means less money for making ‘normal’ people even more comfortable.

You may think I am being unkind. But I am not attributing conscious intent to any action – rather an unconscious one. I am not suggesting intentional unkindness – rather that an unconscious limit has been imposed upon natural kindness. What worker installing a seat that was exposed to sun and rain would do so knowing that their mother would be a user – unless their natural care was dulled? What dulled that sense?

In the past I have looked at bigger accessibility issues – things not done because of larger limitations. But things done to facilitate access done in an imperfect way have eluded my attention. It has only been since I became member of my local government access advisory committee that I have become aware of how much thought must be put into seating in public spaces to make those spaces accessible.

A bench style seat could be an aid to access, or it could be place where the unimpaired take their ease to enjoy where they are – and this they will not do under the hot sun or in rain without protection. And because advanced age itself is not a disability, just a consequence of the passage of time, a seat in a park, or on a street is more a reward than an aid to seniors.

When we imagine seats as aids to access, we are adding a new dimension of thought to design, material, and placement. At a basic level a seat is something to sit upon. It can be a nice to have or a must have. Nice to haves are for enjoyment. They can enhance the experience of being somewhere. A seat as a must have is something that makes being in a place possible. It becomes a necessary and accessible resting place. By accessible I mean you can get onto it and off it independently.

A must have seat is needed periodically for resting and stabilising so as to enjoy being in the place one is in. A perfect example of this is at Wentworth Falls lake where a concrete pathway has been extended to a small jetty at the western point of the lake. A seat has been installed about halfway along the path, and another seat on the jetty. I can just use the seats in terms of height for getting up. But, as attractive as the seats are – chunky timber – they give me a wet bum when I go walking after rain.

I love the fact that the path and the seats have been installed. I have added a trip to the jetty to my morning walks when I crave being by water. I pack a small towel into my shoulder bag because, on wet mornings, I am still a little self-conscious about walking around with a large damp patch on my backside. What might some folk think?

Wentworth Falls lake is a fine example of an accessible pathway in an attractive setting with nicely spaced seats, and work is being done to make it even better. Even so, there is inadequate attention to weather – as it is assumed that the only time people with disability go walking in when the weather is suitable. The idea of folk with disability walking for exercise, even when the weather is not ideal, hasn’t struck a chord. The tyranny of idealism dominates.

Conclusion

A few years ago, I was in Mudgee on my way to Dubbo. I parked opposite a taxi rank to get some breakfast at a café just around the corner. The café is now closed, sadly. I was struck by the presence of an eminently sensible idea. The taxi rank had a roof. The drivers could sit in their cars on a stinking hot day and no longer suffer as much. The roof was new. But hot days and taxis were not. It took a long time to care about the drivers, but it finally happened.

I used to rely on taxis to get from home to the station on a regular basis. I remember that even hot days in Katoomba were tough if you had to sit in a car in the sun for any length of time. I told the drivers about what I had seen in Mudgee. The reaction was uniform – what a great idea, but it would never happen here. It hasn’t – yet.

I don’t know what year the roof went up over the taxi rank in Mudgee. It wasn’t there in the early 1990s when I started to be a regular visitor, and I don’t recall it prior to 2008. But I do know that back then there very hot days and taxis.

I am not trying to equate sitting in a taxi with sitting on a park bench. I want to draw your attention to the fact that finally somebody figured that dehydrated taxi drivers serve no good purpose. The light of kindness penetrated the fog of…what? Taxi drivers are too low on the ladder of respect to care about? They are god-like in their thermal endurance skills and we don’t need to care?

Some of us are old enough to remember when car seats didn’t slide back or forward. There was one position, and the seat [a bench seat], was firmly bolted to the floor [ah, a twinge of nostalgia ripples through me].

We don’t have them anymore because we stopped thinking in averages. These days you can pimp your ride in myriad ways. 

Universal design is a thing that’s not well understood. It’s also called Inclusive design. It’s different from ideal or average design in that the intent is to design for everybody. Can you make a park bench that suits tall and short people in all weather? I don’t know the answer, but I do know that’s the question to be asked once the spell of idealism and averagism [it’s a word now] is broken.

Seating matters to me. It seemed like a simple matter until I got interested. I used to put up with discomfort and inconvenience because I was just so darned grateful to be able to sit down at times. But when I was obliged to think about it from other people’s perspectives it became emblematic of a way of thinking that we are working to change.

Things begin to change when we start asking the right questions. Getting to the point of being able to ask the right questions is an adventure and a challenge. Up for it?

Introduction

I mentioned briefly in my last post the hassles of travelling with a disability. The specifics vary at an individual level and can range from huge [like a step a wheelchair can’t get over to relatively minor [like a coffee cup with a handle you can’t grip].

My purpose here is to give a perspective on the genuinely good effort to make our notionally shared environment genuinely accessible – and why accessibility doesn’t stop at the obvious.

The coffee cup or mug

I have 2 options these days. I can carry my own drinking vessel or ask for a takeaway cup at a café. I confess to electing the latter because carrying my own cup isn’t always a doable thing [okay, that’s not really true – it’s just another hassle I resist succumbing to].

Here’s the problem and do please check this out. It takes a certain grip strength in your fingers to hold a cup/mug by its handle. If you have that strength that’s fine. If you don’t the only option is to pick up your tea or coffee using the body of the cup/mug. If you like your drink cool this is fine. If you don’t, you will burn your fingers – or use a straw.

Ceramic drinking vessels are cheap and generally robust, but they are awful if you have an impaired grip. They bleed heat, and their handles are rarely designed with kindness. When an environmentally unfriendly paper takeaway cup is vastly superior something isn’t right.

Ramps are not always the answer

Getting into my chiropractor’s practice rooms obliges me to encounter a triplicity of impediments, the worst is the ramp. It is short and a bit steep. Then there’s a screen door and a round handle. What is it with round handles? The lever is perfectly fine and suits everybody.

The ramp replaces a step in the misguided belief that’s a superior alternative to a few shallow steps. It is a minor irritation to those for whom it makes no difference. But it is a serious pain for those it was meant to benefit. Because it is short it’s still a case of having to step up, but now over a greater distance, and starting with your foot angled up – which is an issue if your ankles don’t work. The door is too narrow to get a wheelchair in, so it wasn’t designed to assist wheeled access.

It was a well-meaning attempt to solve a problem without thinking it through properly. It makes access harder and less safe for some.

At Govetts Leap lookout the recent improvements have thankfully included sealing a spill over-carpark, but then there had to be a step up to a walking area via a gutter. But rather than a sharply defined gutter there is an elegantly curved one that has a kind of ramp effect. I am not sure whether the gutter design is aesthetic or intended to be helpful. You could maybe get a wheelchair up and over it.

But for people like me, and older persons and people with sight impairment it is more a potential hazard than a help. Now it’s a longer step up over an ill-defined area, and there’s no support to steady balance with.

There are well-defined benefits to be obtained from having ramps. But that doesn’t mean that the ramp is a universal solution and that all steps are evil. I received a firm education about this after extolling the joys ramps in the company of an access consultant who promptly and firmly reminded me that folk with balance disabilities would not agree. And, as I have discovered, balance isn’t an issue just because your sense of balance is impaired but also because impaired mobility can make balancing perilous.

Grips and rails that do nothing

In Rylstone NSW, there’s an ‘accessible’ toilet in which the pan was installed half a metre away from handrail intended to be used to help a user rise after use. Several workers executed this job without once wondering whether the placement measurements made any sense. I did send a polite message to the region’s council, but I haven’t been back to see if it has been sorted.

In Canberra a motel’s ‘accessible’ room has a sign above a towel rail warning users it is not a handrail. The handrail, which is beside the toilet, is too ‘beside’ to be of any use, so users reach for the towel rail. I did politely point this out to the motel operators, but a year later the sign was still there. The clue the handrail may not have been well-positioned wasn’t obvious enough.

Placement of handrails, and their sizes and shapes, should be a science. It is in the sense that there are standards. But it seems also to be an art practiced by folk of good intent, but with no aptitude for research or focused critical reflection. Here’s a brief sampling of various motel efforts in NSW.

• A single small hand grip that is variously placed too low, too high, too close or too distant to be of benefit to other than the one random person for whom it is optimally placed. I have never been that person.
• A handgrip placed over a bathroom cabinet which was so close to the toilet there was hardly any room to get knees into the tiny space left. The handrail was unusable. Mercifully the handbasin was close enough to serve as a grip.
• A shower that had a small supporting handrail in it, but there also a significant hob with no support to get over it. Hence those able to get into the shower would have little use for the support
• A shower that appeared accessible and had a decent sized support rail immediately under the shower head. But how to get to and from it? Who is going to test whether the tiles are slippery?

I am not sure how folk who run these establishments envision their efforts – other than with no clarity. There is certainly no belief that people with a disability might travel alone or that they might desire to toilet or shower themselves independently.

Older folk travel too, and they don’t see themselves as people with disability – just with the downsides of getting older. Motel and hotel bathrooms can be danger zones for a lot of folks. And yet there are no standards to be met before a room can be called ‘accessible’ – or ‘elder safe’ [that’s an idea that just struck me – I don’t know if it’s a thing – but maybe it should be].

It isn’t just about mobility

Mobility access is important, but that not the defining feature of being able to travel with some degree of comfort. There are many other aspects of disability which have little adverse impact of mobility in terms of getting around, but which can be adversely impacted by how hotel and motel rooms are designed.

For example, was I was staying in a decent hotel in Sydney because it tended to be kinder than many in its room layout – but still pretty bad, even though it advertised accessible rooms. Here are a few things that were major flaws:

• The return on the door was so strong I needed to lean hard on it to open. I asked for it to be adjusted. It wasn’t. 
• The room had several lighting sources, including a standing lamp with a floor switch behind a sofa. I had to ask staff to come and switch it off.
• Even though the room was notionally suitable for a wheelchair user the tea/coffee making station was at hip height and far from the table.
• The two-seater sofa was very low and with very soft cushions. I couldn’t use it. The only other place to sit was at the table from which I couldn’t see the television.
• The television was on the wall directly in line with the bed. I cannot sit in bed leaning back on pillows. I listened to, rather than watched, the telly.

The rooms toilet was fully accessible, and the shower marginally so – usable but dangerous. The rest of the room couldn’t have been better set up to make staying there unpleasant and uncomfortable. There was no concession to disability accessible anywhere outside the bathroom. And even so I had to ask for a chair so I could shave and clean my teeth. 

The room was set up based on an incoherent vision of a person with disability – just a jumble of diagnostic features and not a whole person. These diagnostic features related to design standards – but we are not design problems defined by a cluster of ‘symptoms’.

Let’s not mess about here. Being able to wash and toilet is absolutely essential. But its not all we think about, and it’s not how we define ourselves. We want comfort and enjoyment as well as being able to meet essential needs.

Conclusion

This is a brief personal reflection on small array of the things that can make going anywhere a pain in the butt. By that I mean experiences that corrode the pleasure we might derive from short or long trips. Its not meant to be about enduring discomforts, inconveniences, and perils, but it can become like that.

I get that being able to have one’s essential needs is important, so I am not griping about welcome accessibility features at locations and venues. That’s just not where our expectation of equal rights and dignities ends. These accommodations are not the whole edifice of our equality – they are just the foundations.

The ceramic coffee cup is emblematic. Who is it designed for? An unimpaired ideal. I didn’t like these designs before GBS – barely functional handles that my large hands struggled to make usable. Who is the hotel room designed for? An incoherent assemblage of attributes – a mythic ideal person with disability?

We create ideals that are incoherent. We know the ‘average person’ does not exist but when we make lots of things in anticipation of use by lots of people, we have to guess what is good to make. Obviously personalised design to meet every person’s needs is not practical at the moment. Maybe in a few centuries we will have figured out how to do that.

What we must do is reinvent the template of the ideal human to be ‘ideal’ in the sense of being able to embrace the spectrum of being human, rather than a vision of unimpaired and unblemished perfection. We are not Greek gods and goddesses. We are those whom they treat capriciously.

Then we can imagine that a person with disability is a broad spectrum and coherent representation of the reality of living with disability – and not a disembodied assemblage needs defined by standards and compliance demands.

Introduction

I have been distracted from writing on disability this past month or so. But I have been immersed in disability from several angles. My twin sister is having a hard time getting her daughter on to the NDIS. The pressure of life circumstances and dealing with a bureaucracy can overwhelm. A friend told me about how disability severely impedes his ability to travel any distance. We commiserated about the way travel, which used to be fun, has become a judgement game about accessibility and the limits of tolerance.

On the home front I have been chatting with National Park & Wildlife Service staff about upgrades to Blue Mountains venues which are now more accessible than before. But still there was lost opportunity for a more natural inclusion. In this case design challenges were dictated by engineering imperatives and then regulations about safety.

I have been distracted by a long-term inquiry into the nature of belief in which I conclude that we can hold our beliefs tightly or softly. We can be fixed and attach our sense of identity to what we believe. Or we can locate our sense of identity someplace other than what we believe. 

This unexpectedly came to matter a great deal when I came to look at belief through the filter of living with disability.

Love and struggle

One of my sister’s daughters has a disability, as does her daughter, and they are all sharing a small flat because finding a place to live has become incredibly hard. And when you need help to make a go of your life the degree of difficulty grows when finding a place to live borders on the impossible. 

Ideally my niece and her [now adult] daughter would be living as they were in Melbourne – in their own place with support. Then they moved to be closer to my sister in southeast Queensland for the care and love that brought. But now they are living with her and her husband in a tiny place not intended for 4 people.

Nobody is happy. Nobody wants the situation to be as it is. But changing it seems like a monstrous challenge that is beyond them for the moment. My sister is retired and wisely downsized to make their cost of living manageable. Now there are 4 people in a 2-bedroom flat. My niece and her daughter share a room out of necessity, and neither like doing so. Both have intellectual disabilities so the nuances of adjusting to fortunate adversity are not available. I say fortunate adversity because if you are going to be ‘homeless’ living with your mum who loves you is fortunate.

Like so many parts of the country the passion for Air B n’B style accommodation has collapsed the rental market, and driven rents up. This pushes the demand for public housing up, and it is already under pressure. The unfortunate reality here is that my sister lives in a ‘holiday destination’ where housing pressure for folk like her daughter is already intense.

One of my favourite jokes is: Q: “How do you make God laugh?” A: “Tell Him your plans.” Its not a joke I share within earshot of my sister these days. I am okay making it. I wasn’t planning to end up with mobility and grip disabilities. I can still hear divine laughter echoing down the last 15 years.

What was what seemed like a good plan – to move closer to mum and other family members – has turned into a bit of a disaster. The NDIS business will get sorted out. Good people are on to it. The housing situation is another matter without ‘divine’ intervention.

Back breaking travel and the safety of home

My friend has a spinal condition that makes travel of any kind a risk and a source of pain. He elects to drive so he can take along equipment that can ease pain and discomfort travel causes. A 3-hour driving trip will necessitate 4 breaks and recovery time on arrival. So, it becomes more like 5 hours.

He has the immense good fortune to be able to work from home where he has therapeutic equipment that he can use during the day to ease spinal discomfort. Without it his ability to deliver high quality work would be limited. He is deeply grateful for the opportunity to work from home, and for the NDIS which made it possible to acquire the therapeutic equipment he needs to ensure he can get through a day.

Travel of any distance has become a calculated risk and undertaken only when circumstances warrant it.  He can’t use public transport, so he must drive. This was also true of a mutual friend with MS. In both cases a trip to an event in Sydney would mean travelling the day before, staying overnight, attending the event, staying overnight, and returning the next day. 

I could drive the same distances, attend the event, and return in the same day, admittedly with long hours. At least I could have once. These days the cognitive and muscle demands of driving with impaired ankle function have ruled out driving into Sydney. Its seriously stressful. I can drive okay, but the cognitive demand in city traffic steals any residual pleasure that is left. I so much prefer country driving. 

Being able to drive is a blessing, but with disability there are also limits and considerations of safety and wellbeing to be factored in. 

What is the challenge?

Govetts Leap Lookout in Blackheath is no longer the inaccessible place it was. Access has been markedly improved. Wheelchair users can now move with comfort and ease. I am grateful for the changes too. But its not perfect. Why that’s the case is interesting.

It does take a practiced eye to see subtle truths. The site had an access consultant who observed important concerns. But they are not omniscient. We don’t understand that having a disability doesn’t make you expert on all the rest. I have met access consultants with and without disability and they are pretty good. But they miss things.

Govetts Leap is a case in point. I get around on Canadian crutches. I can’t take photographs without leaning or sitting. At Govetts Leap there was a brand-new lovely stone wall ideal for sitting on, but behind it there’s a significant drop onto a ramp providing access to the toilets. 

The solution was to instal a handrail in front of the wall to prevent sitting on it [and hence falling backwards off it] rather than placing a barrier behind to prevent falling backwards. The solution solved the safety problem at the cost of utility.

There are seats on the viewing platform around 3 metres from the railing, meaning that on a busy day, if you needed to sit, you’d have no shot at seeing the view without constant interruption.

It wasn’t that there wasn’t sensitivity to the needs of people with disability. It was that they were seen as a problem to be addressed and not a requirement to be designed for as part of the overall experience of being there. Having the seats closer to the view would have created obstructions for standers. Sitters are relegated to a lesser status. 

Standing is the dominant mode. Sitters in wheelchairs can be catered to. They can wheel up to a viewing position no problems.

I learned this at the National Gallery in Canberra. I can book a mobility scooter and park myself in front of a painting – which I do shamelessly. The necessity of being propped upright via crutches is very different. One is neither a competent stander nor a mobile sitter. I need two legs and two arms to stand and move. I am envious of wheelchair users at times. Needing to engage all 4 limbs in the act of getting about is a pain.

There are times when engineering realities and standards compliance demands rule out human centred solutions, but there are also times when the problem is simply that the human priority is not pushed sufficiently forward. But it takes awareness of that possibility – and a passion to make it a priority. That is what we have yet to develop.

What we believe matters

These 3 instances of when disparity between design and intent, and plan and reality can cause major problems comes down to belief about what is possible and necessary. Such belief might be entirely justified but not equal to the reality of what is desired.

My sister planned her retirement intelligently. She moved from a large home to a small flat in the belief that this met her, and her husband’s, needs and means. And then daughter turns up with her daughter and what was a short-term crisis response to a transitional challenge becomes a long-term unhappy scenario for all. 

I can’t say anything critical about my sister. She thought her kids were sorted to the degree that she could select a housing solution that met her needs. When that turned out not to be the case, she brought her daughter and her daughter into a setting that turned out not to be as temporary as envisioned. The consequent psychological stresses were surely predictable. But getting access to the assistance all were entitled to has become a challenge that is eroding everybody’s psychological wellbeing.

The Govetts Leap redevelopment was welcome and inclusive of people with disability. It was a huge improvement on what was there before, and we are grateful. But it became evident that things might have been even better, had inclusion and accessibility been a primary consideration rather than one of compliance and modification of the normal way of designing things. 

There was evident goodwill in the folk who worked on the site, and it would be unjust to criticise them. The problem is a larger one of how designs are conceived and that’s a philosophical question before it is anything else.

I have left my friend with the dodgy back to last because he is a good news story – well mostly. Okay having a degenerative spinal disability isn’t anybody’s idea of good news, but he’s living with it as well as could be expected because of the support he has been able to get.

He can travel but under constraints no reader would enjoy. Travelling has a risk of potentially serious adverse consequences. 

We imagine travel with whatever ease in movement we have. I have been urging him to come to the Blue Mountains and he has been urging me to visit where he is. I am reluctant. He is reluctant. I have my home set up the way it works for me and when I travel, I find the constant stream of small inaccessibilities wearing. The anticipation of pleasure morphs into endurance. It’s the same for him.

My brother, who is a wheelchair user, recently travelled to Tasmania. He flew out of Brisbane where he experienced disrespectful treatment by his airline’s staff that bordered on discriminatory aggression but was greeted with kindness and respect when he landed in Launceston. The trip was carefully planned to ensure he went only to places that accommodated wheelchairs.

That’s an easy ask. In contrast, when the nature of a disability is not plain the notion of accessibility is generously imagined. I have written on the hotel and motel rooms that aren’t as accessible as asserted and believed.

For all 3 of us travel is something we crave, but resist. What was a pleasure has become an ordeal.

Conclusion

Disability has different dimensions at a personal and social level. It influences how we experience life – whether we are the person with lived experience of disability, are carers or families responsible for supporting a person with disability, or members of the community with varying degrees of comprehension and empathy.

My sister may help her daughter find her own home next month, next year, or not for a long time. Nobody had prepared for a long-term sharing of a 2-bedroom flat by 4 people, two of whom have intellectual disabilities and behaviours that require managing – or at least guiding. How would you respond?

In NSW there is a very welcome commitment to making our shared natural landscape more accessible. It’s an evolving perspective that sometimes runs hard up against thinking that is dominated by engineering and compliance focused solutions. Inclusive design isn’t yet a universal approach. Sometimes the user with disability perspective is invited only at the last moment to tweak what is believed to a compliant design. And it no doubt is. But when were the design parameters, standards and principles revisited to update them to meet the perspective of lived experience as we now understand it? That’s a constant process of evolution. 

But it’s an evolution resisted by bureaucratic processes – because that’s how things work. Change is resisted as a natural and responsible response. That’s why we celebrate small victories. Things change via small steps and rarely great strides.

My friend with the spinal condition is a celebration of what can be done. He can work from home. He can have what he needs to make the physical reality of being in an impaired body a tolerable experience. 

He can travel away from his home with care and caution. He has a good life in terms of how he has been able to make living with a significant disability work for him.

I was too old to be eligible for the NDIS when it introduced. Ironically, I worked on its activation in the first district in NSW [and hence the country] just as I became ineligible to apply.

Disability means many things to different people. We are shaped by the idea and the experience. I live with mobility and grip disabilities. My twin sister has a daughter and granddaughter with intellectual disability. I have a brother who is a wheelchair user and whose son is on the autism spectrum – as is one of my niece’s daughters. A nephew has Chronic Fatigue Syndrome.

My family is rich with disability. We have had to confront expression of the human condition in myriad forms, and we have stayed true to being loving and compassionate and inclusive people.

Many of us have limited awareness of disability, but if we looked deeply into the lives of those close to us, we’d find a lot. It just often not a theme of conversations nor a focus of concern. It’s also been artificially separated into social categories.

This is most evident in how the NDIS has been set up. The shut off date of age 65 suggests that older Australians are supported by aged care services, but they are not funded any where near the NDIS levels of support. What has age got to do with access to care and support?

I am not arguing for a universal NDIS level of support, but rather a universal level of awareness of disability, which would remove the need for so many supports by making our culture more attentive and responsive. This awareness isn’t about specific disabilities. It’s about something more subtle.

I was inspired by the Scottish dancer and choreographer, Claire Cunningham. She relies on Canadian crutches for a great deal of her mobility and incorporated them into her performances. See https://www.youtube.com/watch?v=GAoQgmQekxc&t=130s

Claire observed that disability is part of the spectrum of being human, and not always a problem to be fixed. And certainly not responded to solely as an act of compliance with standards or legislation.

I have observed elsewhere that our culture is infected by the sense of the ideal. Even after catastrophic wars in which those who served in our defence and returned with multiple forms of disability, we continued to create a built environment that catered only to the capacities of the uninjured – the unblemished. We made our ‘shared’ spaces exclusionary, and inaccessible to those whose service should have made such exclusion unthinkable. We are beginning to repair that insensitivity now.

We are happy to smooth the way for ‘normal’ people by making their lives more comfortable and convenient as a matter of course. That’s our ideal.

We are discovering that evolving technologies are astonishingly adept at making life more accessible for people with disability. I discovered the iPhone when I was relearning how to make my body work as I recovered as best I could from GBS. Now it’s my indispensable ‘Swiss army knife’ of functionality. I recently upgraded to a 14 Pro. There is potential in our evolving technology to make living with disability as good as it can be – and if we can match that with a kinder built environment that would be better still. 

But that’s not even a fraction of living with disability. The other dimensions of limited, impaired, or constrained experience are not often articulated because it’s a hard topic to bring up without an assurance of trust and safety – and knowing there is a desire to know and to understand.

Studies have shown that many managers elect not to engage on the subject of disability with their staff because they fear inadvertently giving offence. But put this in context. Equally there are studies that show that people in leadership roles become less empathic. In terms of evolutionary psychology there are good reasons why this might have been a desirable trait in some leadership scenarios. But now it just doesn’t work in a contemporary workplace – or in our communities.

Fear of giving offence and a situational loss of empathy blends with feeling a lack of safety to be open to create a gulf of engagement nobody wants, but which few feel comfortable bridging – despite both sides needing and wanting to do so.

Disability can open us to the diversity of human expression or trigger us to avert our eyes. Sometimes our desired choice can be overridden by reflex that takes firm intent to counteract.

A few years back I was working in Penrith. There was a pub just down the road a few doors which was a convenient venue for lunch. The pub was visited by a disability service which brought people in wheelchairs in for lunch. These were people with profound levels of disability whose contortions, noises and appearance unsettled some of my dining companions. That was understandable. Here were extreme and novel expressions of being human. You had to get over the novelty and adjust to the extremes.

We need that adjustment. There is a naïve and idealistic demand that we are instantly compassionate and caring. No, we are not. When our conditioned senses of the ideal and the normal are assailed, we must adjust. We can either widen our capacity to embrace or narrow it. I was okay in that pub because I did my adjustment back in the early 1970s when I bathed, fed, toileted and dressed people like that in a psychiatric hospital’s ward. Seeing them in the pub enjoying lunch was at first a surprise and then a joy. But I must confess getting to joy had to overcome some biases I had allowed to be built up in the intervening years – because these people were not routinely present and not part of my normal.

What does the idea of disability do to you? It is an important question because the very idea of disability is not well comprehended. In one sense it is a person who can’t. In another it is about an environment that won’t. 

We have made disability more about the environment that won’t these days, and we demand it change to the environment that can. This is an essential evolution. But it is an insufficient understanding.

A few years ago, I was invited to assess an e-learning disability awareness course. Each stage was followed by a quiz and if you didn’t get the right answers, you couldn’t progress.

I got to the section that asserted people with disability can do whatever they want [implying we are stopping them] – Yes or No? The ‘correct’ was ‘Yes’. But I hit ‘No”. I can’t garden, do home maintenance, bushwalk, take photos without sitting or leaning – and etc. I failed the course – as DEN Chair.

Disability robs us of potential to do what others do and can render us dependent, limited and sometimes frustrated and even angry. That’s why it’s called disability. Yes, the human made environment has been designed for the unimpaired, and sorting out that discrimination is a huge issue. But its not the only one, or the one that should have the bulk of your attention.

Claire Cunningham has it right in my view. Disability is part of the spectrum of being human – which means we equally share in the dignity of being human. But to share in equality of opportunity and participation we need to surrender the belief that ideal of the unimpaired is naturally and innately privileged – instead of just being fortunate – and even that in a limited fashion.