Month: December 2022

Introduction

After my last essay I was reminded that people with disability are still being called ‘inspiring’. My immediate reaction was to ask, “Who is inspired, to what are they inspired, and what action have they taken?” To be fair, I will allow that a person with a newly acquired disability may be inspired by a Paralympian to participate in sports. But that’s not how it usually goes.

The colonisation of identity

I have often been told that I am inspiring, and I have had to bite my tongue. I was supposed to feel good that I had excited a rush of emotions, triggering a dopamine hit like a small win on a poker machine. I don’t come with sound effects – just a cranky silence.

If my visible disability inspired action toward greater enactment of inclusion I wouldn’t be writing this essay. It doesn’t, because a dopamine hit triggered by an excitation of a sentiment of empathy or sympathy doesn’t change behaviour. It just stimulates a desire for more hits – more expressions of sentiment. 

My theory is that my identity as a person with disability is co-opted in the service of making others feel good while delivering no benefit to me, or other people with disability.

Here is an illustration of how this works. The 2021 NSW Public Sector State of the Sector Report noted that people with disability are the most bullied segment of the workforce. It also noted (on page 39) that “Bullying, discrimination, sexual harassment and racism should not be tolerated.” Note the passive ‘should’, rather than an active ‘will’ or an imperative ‘must’. What is going on here?

On page 47 there is a graphic chart on bullying, which I will translated into approximate figures – people with disability 24+%, Aboriginal people 20+%. LGBTQI people around 17%. Two other groups over 15% were regional and frontline staff – that’s a whole different problem area.

On page 6, in Commissioner’s foreword, we read “The workplace experience for people with disability is an area in which I want to see us make significant improvements. There is much to be done to ensure people with disability feel they are included and belong in the workplace, and are supported to do their best work.” Note the expression “there is much to be done.”

The report does not say people with disability are inspiring. But the problem is the same. There is a problem – staff with disability are being bullied at a far higher rate than other staff. They are not, therefore, ‘supported to do their best work’. There is an acknowledgement that there is “much to be done”, but  bullying is only passively frowned upon. Conflicted and mixed messages.

But here’s the thing – if you are supposed to be committed to Disability Inclusion, but you aren’t really, making a show of being so is all that is needed. That showing can give you a dopamine fix and fool you into thinking the sentiment is real. Substituting sentiment for action is something we all do. This is why we fail at our efforts to convert a ‘new year’s resolution’ into action.

Saying you are committed to Disability Inclusion doesn’t mean you are. Only acting out that commitment is real.

This is a cranky point for me. When people express empathy for, or sympathy toward, people with disability but don’t do anything it comes across as a form of abuse. Our identity is used to serve their ends – they get the dopamine hit and we get nothing – except an expectation we should feel good because we have inspired somebody to express a positive sentiment. This is not okay.

This isn’t a problem solely for people with disability. Inclusion in general is mired in sentimental inactivity. Iris Bohnet’s What Works is a critical examination of stalled efforts on women’s equality in workforces. Her solution is intentional and systematic action – going beyond the sentiment.

Leadership is where empathy goes to die

In an earlier essay I wrote about how it is acknowledged that leaders lack empathy, and this seems to be something innate in our evolutionary past and our neurology. I get that. I see that in many situations, empathy impedes effective leadership – war is a good example. I am not saying I approve, just that I understand that what lies in our evolutionary past is what it is.

But that’s not okay these days. Our cultural values have evolved faster than our personal reflexes. Even the military has had to adapt. Now concern for individual wellbeing is a necessary consideration. Expressing an inclusive sentiment, getting a dopamine hit and moving on without converting that sentiment into action isn’t okay – in theory. It still is in practice.

Part of the problem is the reliance on a purely intellectual input into management and leadership training – such as it is. Management and leadership practice is often several decades behind research and theory. But its worse than that. The idea of emotional intelligence has been around since 1990 and popularised in 1995 (when I first encountered it). That’s at least 27 years ago. And yet its little known among current managers/leaders.

The reality is that genuine empathy compels action – and that’s a problem within an organisational culture. Action demands Resources, Attention, Commitment and Effort (RACE). And it’s not a ‘race’ managers/leaders will run willingly without strong leadership from on high.

Inspiration without action is homeless

I get that when a person says a person with disability ‘inspires’ them that they intend to express genuine good intent. Melinda Briana Epler, in her great podcast, Leading with Empathy & Allyship, reminds the listener constantly of the need for consistent action. There is no point in being empathic if you don’t take action.

If being inspired is not anchored to a commitment to action it becomes parasitic. It doesn’t have a moral home and so colonises the identities of the people it purports to admire and support. It draws energy from the very people it imagines it is contributing to. It turns their needs into its nourishment.

Being inspired is self-serving – unless it triggers a passion backed by action in service of a cause.

It’s okay to be inspired to act by a person with disability

There are some people with disability who humble me. Their fortitude, determination, and dignity can leave me feeling like I still need to sort my attitude to what I have been through. We are all learning how to live with, and grow from, what has happened to us.

Acquiring a disability doesn’t turn people into saints. It doesn’t make them admirable or role models in a general sense. But what you can learn is that the human spirit has a capacity for resilience that can surprise those who have faced no great life challenge. This is true for so many people – those who have experienced abuse, torture, violence, and traumas of many kinds.

People with visible and obvious disabilities are people apart, a special category of inspirational and heroic sufferers of misfortune. We are the icebergs of humanity – the visible aspect of struggle and trauma. We represent, by accident, the human spirit as it expresses the universal potential for resilience.

If we inspire anything, let it be that you too can do what you think we do – and that this is what you find admirable. 

Conclusion

I am aware that there are people who style themselves as disability advocates and who respond to the heroic/inspirational model. They have a role in that they may make a positive difference for some people.

But it’s a limited role that has no function inside organisations – which is where I am focused. Disability Inclusion is a tough gig – as is the whole spectrum of Diversity Equity & Inclusion. Organisational management and leadership are part art and part science – the science is developing constantly and the demand on the art is increasing.

We must avoid sentimentality and the allure of the dopamine hit and attend instead to genuine action for change based upon sincere empathic response. Real effective leadership in driving and fostering positive change depends upon clarity of awareness and depth of commitment to knowing what is going on.

Introduction

I was discussing a mutual acquaintance with a former colleague. This person had acquired a significant disability. Their person style was abrasive. I wondered whether the trauma of the acquired disability was influencing their personal style. 

I recalled my 10 months in hospital. I was paralysed for 3 months, and the remaining 7 months were a grimly determined struggle to recover control over my body. I ended up with life altering residual disability in my ankles and wrists and hands. 

There was no psychological support offered. The focus of attention was on the body, not mind or emotions. 

I was 18 months off work, and I came back in not a good head space, or heart space. I was determined to recover my ability to work effectively. That was seen as heroic. But it wasn’t. It was survival, and I was freaked out. I know that now. I didn’t know at the time.

We are not heroes

A few years ago, I was getting my crutches out of the car when a guy walked briskly by and called out, “You are my hero!” He was gone before I could react and respond. I would not have been civil. 

Quite a few people confessed that they couldn’t have done what I had. To them I said they were selling themselves short. 

I am not suggesting that genuine heroes do not acquire catastrophic disabilities – only that the measure of being a hero is not the disability, or how it is handled.

If anything, people who have catastrophic experiences which leave them with a disability are way-showers to those who have had no discernible trauma in their lives – you too can do this. We are resilient, but we also suffer.

Permission to grieve?

In the spectrum of what can happen I am comparatively lucky. I did not injure my spine. I still have all my limbs – but even so a guy I know with two below knee amputations walks better than I can. 

Still, I haven’t felt there was permission to grieve granted to me by those who cared for me – and I scarcely allowed that for myself for a decade. 

Grief is about letting go, not feeling sorry for oneself. It is about acknowledging and owning what has happened, not suppressing, or denying it. I lost the ability to garden, go bushwalking, perform home maintenance tasks and a bunch of other things that were integral parts of my normal. I am reminded constantly of that loss, not because I dwell on it, but because the garden still needs tending, as does the house.

But grieving is not just a one-off thing. It can last a lifetime. A friend who lost his son to bone cancer when he was just 17 remembers his death with his daughter each year. And when an experience re-defines you as different from those you were once like the reminders can be constant.

One of my former colleagues became suddenly deaf after being given medication for a condition that had nothing to do with his ears. I spent quite a few hours on the phone with him once he acquired hearing aids that allowed him to use a phone. He was traumatized by his sudden loss of hearing. Nobody had spoken to him about the sudden loss or let him speak about his experience. In 2019 he spoke at a seminar on disability awareness held for regional staff members. He talked about what felt like to become deaf, and the struggle of adjusting.

I saw him change – from being angry to being an advocate. He was angry because he had become deaf. He was frustrated nobody he worked with understood that. Rather than giving empathy they were remote. They didn’t understand – how could they. He didn’t understand but was expected to do so. He was expected to be ‘heroic’, but that was a role imposed – as it always is. And we assume heroes don’t grieve, they ‘suck it up’.

Courage and determination aren’t exceptional

I constantly remind myself of Claire Cunningham’s observation that disability is just part of the spectrum of being human. People quietly experience and endure shocking and painful experiences – and we adapt mostly – though in ways that are not always ideal. 

When I was in hospital, I became alarmed that my welfare was at risk, and I became angry and militant. I look back with no apology. My energy was directed only at the people who put me at risk. They had assumed I was to be consigned to a nursing home. I had a differing opinion.

These days we understand trauma much better that 14 years ago. But popular perception has not caught up. Trauma informs so many lives, but only a few are pressured to be heroic.

Exclusion also causes trauma

Apart from the impact disability can have on one’s personal identity – the personal sense of no longer being who one was – the exclusion from being like other people is deeply painful at first – then it becomes an ache that does not go away.  

It takes time to adapt. We are neurologically programmed to favour those who are like us, so becoming unlike those we were once like triggers a sense of removal. This is true even when our in-group remains apparently accepting and embracing – subtle act of isolation can still apply.

This isn’t a moral matter, but a biological one. The obvious area where this is most telling is in intimate relationships – and this can impact social relationships as well.

We humans are social beings. Our sense of identity depends on how we interact with our community and in-groups. Subtle acts of exclusion can sting deeply and wound. A gross act of exclusion can be seen as transgressive to a group, but the subtle is part of the normal.

This touches on the more complex area of identity and intersectionality. I want here to affirm that trauma can be a personal experience because of a catastrophic experience, and then a social one as the aftermath of that personal experience plays out in one’s life – in relating to others.

The tyranny of the able ideal

It’s not like there haven’t been people with disabilities until recently. Men, in particular, have routinely lost limbs in wars or accidents. And yet designing the world inhabited by humans, something we have been doing for millennia, has only recently become sensitive to the diversity of human conditions.

It’s as though we have become hypnotized by a vision of a human ideal – a mythic average person who has no impairments to senses or body or psyche. It is from this perspective that a person with disability is so often viewed – even by people who are nowhere near that ideal average human.

The upshot is that people with significant disabilities are seen as non-conforming to that ideal – and are heroic in our efforts to live in that idealized world. It’s like what has changed in the minds of those who commission and design the built world has been the revisioning of people with disability as heroes who should be catered to, rather than seeing them as people who express part of the spectrum of being human – people they have duty to serve, to embrace as one of them.

There is a profound difference between making the built world accessible to people with disability and making it available to the spectrum of human expression – in relation to which a person with disability is only a reference point of lived experience, not the primary or sole beneficiary.

Two struggles

The social model of disability is useful in that it draws attention to the way the idealized world is not compatible with the spectrum being human – of which disability is but a part.

But it also creates a distortion – the impact of disability is external – out there in the idealized social world. It is also internal. Behind the imposed heroic masks there is also trauma, unresolved grief, and physical pain.

This reality was brought home to me when a former colleague spoke of his process of getting out of bed, showering, and dressing. He has prosthetics on one arm and one leg. He also spoke of the constant physical pain. The conversation was triggered by my question about why he thought he was being bullied by his manager and the next up manager. He was explaining that just getting to work was sometimes such a struggle he felt flat and dispirited. Anticipating the bullying did not help. Rather than trigger in-group concern, he triggered exclusion, not only because of his obvious disabilities but his mood and manner. He was not ‘one of them’. He was not ‘abled’ like them, and he was not a member of the management in-group. He was an easy target for exclusion.

In my fortunate circumstance I rarely experience pain related to my disability. Everything I do must be conscious and deliberate. I cannot lose attention when I am walking. I cannot lose attention when I am holding or manipulating anything. If I fail to remain attentive, I will fall or drop things. My walking speed is at snail’s pace. I am kept upright by two Canadian crutches. Before my disability was acquired, I was a walker. I loved walking. I grew up in the Tasmanian wilderness.

Navigating a world not designed to accommodate the range of abilities present across all members of our community is a varied experience. Sometimes there is no barrier. Sometimes there is, and it is absolute and exclusionary.

Navigating the inner world is likewise a varied experience. There may be trauma that has not been resolved. There may be grief caused by the loss of senses or physical utility that is unexpressed. In this people with disability are no different from all other people whose lives have been rocked by trauma, loss, pain, or stress. It is that we often have inescapable signs. You can’t miss crutches, wheelchairs, guide dogs, or white canes.

The tenacity of the human spirit

To admire a person with disability as somebody special, or heroic, because they are seen to be out having a go devalues the human spirit. It also devalues the idea of the hero.

According to the Oxford Dictionary a hero is “a person who is admired for their courage, outstanding achievements, or noble qualities” I’d add that this [in my view] pertains in relation to service or an ideal, not about a personal matter. the word ‘hero’ is loosely applied these days. I prefer that it is reserved for those who risk their lives or wellbeing in response to a sense of duty, and in the service of others.

When I was in the rehab ward, I met a guy who had had a stroke. It was his 2^nd. He told me how he had spent 2 years learning to climb the stairs to his bedroom after the first. He had made it, and then the 2^nd one hit him. He said, with a sigh, that he would have to start all over again. But his wife interrupted and said they’d move into a single-story home.

If you haven’t been clobbered by something catastrophic you will maybe not appreciate how resilient the human spirit is. That’s our normal as humans. We are resilient. Heroes put themselves in harm’s way. Some may, as a result, have to struggle to recover as best they can from the harm inflicted upon them in the performance of their service.

Conclusion

There is nothing exceptional about striving to recover what one can from a catastrophic event. If anything, those who do strive are exemplars to remind others just how resilient we all can be – not outliers doing something remarkable.

The guy who said. “You are my hero” could said, “Thank you for reminding me how resilient I can be”.

Seeing us as heroic can hurt us. In the whole of my recovery, which was 18 months [10 of which were in hospital] before I got back to work, not a single person asked how I was coping emotionally. From the time I was suddenly lying on the loungeroom floor unable to move I felt nothing – no fear, no anxiety. Was it shock? Was it a protective reaction that shut down strong emotions at a time they were not useful?

Later, after discharge, I wrote a lot. This is from 21 August 2009: I could do no other thing than I have done. It is not remarkable to be oneself, to be other than in character. For this reason, I have long detested the notion of the “hero”. Courage and bravery are not extraordinary or remarkable. They are commonplace. People of character and integrity always stand up when circumstances demand it.

I think I wrote a lot of my grief out after my discharge in February 2009. But there is still something that may never leave me.  When I see people walking freely there is a twinge of loss – I used to do that.  I am okay with that. It reminds me of what is important.

Introduction

As Christmas nears, I am taking the time to look back on the year from a Disability Inclusion perspective. Some good things have been happening, and some things remain unchanged.

The good things

In July last year I joined my local council’s access advisory committee. Through that I have been involved in consultations with architects and designers re buildings, parks, playgrounds, and other facilities under the responsibility of the council and the National Parks and Wildlife Service.

The commitment to disability access is genuine and deeply rooted in the personal commitment of staff. And it is growing.

The NSW government’s annual survey of its public staff – the People Matter Employee Survey [PMES] – indicates a steadily improving willingness of staff to indicate on the survey that they have a disability. Something is working better for that to be happening. I was pleased to see that my former employer, the Department of Communities and Justice was the top performing department concerning the number of staff recording that they have a disability – 8%. It was 4% in 2019 when the innovations I led kicked off in a big way. 

Earlier this year I participated in a disability recruitment exercise for a federal department. It was run by a private recruitment firm. It was sophisticated, professional, and sensitive to the needs of applicants. I was impressed by the whole process. It should be the benchmark standard for recruiting staff with disability.

What hasn’t improved

Around mid-year the NSW Department of Premier and Cabinet woke up to the fact that there had been zero progress on a Premier’s Priority on lifting the percentage of staff with disability from a low of 2.6% to a modest target of 5.4%. Instead of owning up there was a panicked election-induced effort at a smoke screen to hide the absence of any strategic effort.

Setting a target is all well and good, but failing to develop a means of hitting it reeks of a lack of authentic commitment at the highest level of the sector’s leadership.

The Public Service Commission’s website observed that “In 2022, the proportion of public sector employees choosing to share that they have a disability through reporting in our HR system was 2.5%. Achieving this 2025 target is particularly ambitious as disability is multifaceted and complex.”

You’d think that knowing a target was “particularly ambitious” might have excited a determined response. The same web page goes on to say, “We are committed to building strong foundations”. This is misleading. The graphic used shows the disability employment at 3% in 2014. A benchmark figure of 2.5% in 2018 is shown at a ‘starting point’ on the journey to 5.6% in 2025. In 2022 the rate remains at 2.5% after dropping to 2.4% in 2020.

In 2018 there were 7 years to hit the 2025 target. In 2022 there are 3 years. Zero progress in 4 years. Committed to addressing a multifaceted and complex challenge? No.

There is an important difference between improved figures on the PMES and the formal diversity data, which has not shifted in line with improved PMES data. The situation is multifaceted and complex. I agree. But I don’t agree that the people charged with addressing the challenge have a clue.

I am still hearing horror stories of staff with disability being subjected to bullying and abusive conduct. The managers/leaders responsible rightly feel confident that they are immune from being held accountable. Their conduct breaches Code of Conduct and Work Health & Safety obligations. The absence of accountability is the single most important inhibitor of change. There is no point in espousing a ‘zero tolerance’ to bullying if what you exhibit is a generous tolerance. Unless, of course, you say you have ‘zero tolerance’ because that’s what you are expected to say – and you think nobody really thinks you are serious – which you are not.

The benchmark texts on this theme are clear. Set a standard and model it. Ensure that leaders understand you are serious by holding those leaders who fail to meet it to account in a meaningful manner. The biggest inhibitor to change at a reasonable rate is the presence of exemptions from accountability granted to leaders who fail to meet the conduct standards by fellow leaders.

This is a known issue. But its not a bug, it’s a feature. And because it’s a feature it can be designed out – if there is a will to do so.

The persistence of goodwill

There is an abundance of goodwill and a desire for inclusion is evident. I see this when I talk with former colleagues 

The PMES results for my former employer are instructive. In 2019 two departments (NSW Departments of Justice and Family and Community Service) merged to create the Department of Communities and Justice. In 2019 the PMES results for both departments showed 4% of staff had a disability. In 2020 this had risen to 6% for the newly formed department. In 2022 that number was 8% – doubling in 3 years.

This improvement can be put down to the work of the Disability Employee Network, the response to the department’s participation Access and Inclusion Index, and the response to the Disability Inclusion Action Plan. These 3 things impacted the organisation’s culture, letting individual staff members to unleash their spirit of goodwill. I was part of stimulating that improvement. 

The tension between goodwill and leadership cultures

Stimulating goodwill can do wonders, but it can run into the frustration of leaders not facilitating changes that seem to be plainly needed. Organisations are necessarily hierarchical and the power to drive change is strongest among the leaders.

But the paradox is that leaders become less empathic, less compassionate, and little interested in holding members of their own leadership group to account. There are sound psychological and neurological reasons for this. The good news is that now we know what the problem is solutions can be designed and implemented.

Conclusion

This year has been a wonderful opportunity to work with people who are caring and open to ensuring that inclusion of people with disability is part of how facilities and services are designed and delivered. These are not people who are necessarily well-informed about disability, but they are receptive and responsive when we engage with them. That’s how inclusion grows through the community.

I give leaders a hard time as a group. That’s because the research on leadership as a class merits doing so. That doesn’t mean I am down on leaders individually. In fact, the success I enjoyed as a Disability ERG Chair would not have happened without the support and commitment of senior leaders. Leaders are critical to magnifying the goodwill of staff so that it can be the force for good it has the potential to be. 

In fact, that’s my point. Leaders can magnify or impede that goodwill. DCJ’s 8% of staff with disability in 2022 is a great improvement on the 4% of 2019. It was achieved because leaders and staff collaborated in stimulating the process of positive change. That collaboration kicked off strongly in 2018 and started delivering results in 2019. This is what could be achieved with partial leadership commitment. Had it been whole who knows what the 2022 result could have been.

As a community we are heading in the right direction as we are more and more able to express our goodwill and be inclusive. On a government level there are impressive commitments of resources to ensure that publicly funded services and facilities are available and accessible to people of all abilities. 

Before I acquired my mobility disability in 2008, I could go bushwalking with no concern about whether the track was accessible. Now I need a track to be smooth and not sloping too much, and with places to rest safely at regular intervals. There are not many tracks like that, but they are being created as the financial means to do so becomes available. 

A friend sent me an ABC article on disability employment today, noting that things hadn’t improved for people with disability in the past 3 decades in terms of overall numbers. That’s true for a number of reasons – mostly that organisational leaders have not committed to changing that number.

But in that 30 years things have massively improved for many people with disability. We are more inclusive as a community. That’s been my lesson for 2022. I had spent the past 4 years focused on disability employment and not really been aware of the wider changes across the community – and driven by the public sector. I needed that balancing experience.

Yes, there’s a lot we need to do to address employment of people with disability. Yes, our organisational leaders must step up and own their responsibility to make stuff happen and hold their leaders to account if it does not. We must not diminish how important this is.

Tomorrow morning, I will take my regular walk at Echo Point in Katoomba and be grateful for work done to create an accessible walkway so I can sit quietly and feel close to the wild world. I am deeply grateful for the work done [and resources committed] to make that possible.

My best wishes to you for the Christmas/New Year. I do hope that you have an enriching, restoring, inclusive and accessible time.

Let’s make 2023 the year of engaging with our organisation’s leaders in a more effect way, one that will help them become more committed allies and champions.