What We Don’t ‘Get’ About Disability Inclusion

Introduction

I have a passion to understand why key pain points in the struggle for inclusion experienced by staff with disability (and others) remain stubbornly in place despite genuine calls for, and commitment to, change.

This my latest reflection on the idea that it’s not a bug we have to fix, but a feature we must learn to evolve.

Let’s Be Fair – to Begin With…

Disability Inclusion is an idea that is grounded in legislation at a state and national level – and in a UN Convention – for a reason.

That reason is that our culture doesn’t ‘get’ Disability Inclusion – or inclusion generally. Individuals and families do, of course, when they have direct and sustained exposure through contact with someone they love. In fact, inclusion as an idea is relatively novel beyond intimate circles – in the span of human evolution. Women have been seeking inclusion since before the beginning of last century – as people of equal dignity and rights. Employees have struggled to be treated fairly, and sometimes humanely, since the beginning of the Industrial Revolution. 

In my youth (in the 60s and 70s) I participated in activities in favour of women, Aboriginal people, gay and lesbian people, and multiculturalism. Back then we marched, protested, and engaged in forms of ‘consciousness raising’. As a community, we have made a lot of progress since then. The right to be judged by the content of one’s character and not some other attribute is, however, something that is still in contention. We exclude, now, for fewer reasons, and less uniformly, than we used to. But we still exclude – as the various identity movements make plain.

So, ‘getting’ inclusion – disability or otherwise – is something we don’t instinctively do well as humans. Exclusion is, I believe, hardwired into our biology, and, because of this, it lies at the foundation of our cultural instincts. It was not always a bad thing. Exclusion can be protective and vital to ensure wellbeing. We see this in anthropological and historical accounts of human cultures and communities.

The important thing now is that we live in a complex pluralistic culture in which the legacies of natural exclusion are no longer beneficial, and we must deliberately and purposely change our behaviour.

Intentional Change is Hard

Most of us are pretty inclusive, in any case, these days – in the sense that we are open to engaging with a diversity of people. And we do so comfortably – up to a point. Our contact with a diverse range of people is constrained by family, social and work settings – and that means that the scope of diversity through direct experience is limited. We may believe, rightly, that we are inclusive, but the opportunity to live that out may be limited. And this creates a problem of the novelty reaction.

In 2010, when I joined the DEN set up by AHDC, one of my fellow new members had a right below elbow amputation, which he offered when we shook hands. I wanted to stare, to normalise what I was seeing. It took a few meetings for me to become used to seeing this guy as just another DEN member. I wasn’t disturbed by what I was seeing. In fact, I was fascinated, and wanted to imagine what it was to live without a hand – rather than hands that did not work as intended, as was my situation.

When I became DEN Chair in November 2016, I suddenly found myself on a steep learning curve as I became more aware of challenges deaf and blind staff faced. It took me over 2 years to develop a reflex of sensitivity – we met only 4 times a year. Even so, in early 2021 a blind colleague, who used a screen-reader called JAWS sent me a draft document to review and comment on. I sent it back with an email saying that I had highlighted some passages I’d like to discuss. She rang me up, laughing. JAWS does not read highlighting. I was rightly ridiculed. I felt like a fool for a while. Then I put it down to a learning experience. In my haste I had reverted to my normal reflexes and biases. There was no ill-will or disrespect intended – I was just habituated; and had lost my intentional focus.

I had 4 sisters. Now I have 3 – and a brother. I spent 6 months talking with my youngest sister before I left Tasmania about her struggle to reconcile her deep sense that she was male. She had not long left a fundamentalist Christian movement and was allowing herself to imagine a sense of self that had been gnawing at her.

When she told us of her decision to undergo transgender related surgery and medication the family was thrown into an existential crisis. Despite our conversations I could not immediately empathise with her decision – because I had no foundation for doing so. But I knew her well enough to know the choice was not frivolous – and to undergo what she was about to experience her motivation had to be profound. I had to learn to empathise, so my new brother and I talked daily for months. He was going through a traumatic time. Living a new identity isn’t easy first up – on a personal level, or a social one.

Nothing that I loved about my youngest sister had changed. I welcomed the former ‘her’ as my brother – ‘he’. But my sisters struggled. They still say “she”, even when he is present. Its not that they do not love him. We have regular sib hook ups on Zoom. They are anchored to a belief, which he had violated – and that violation is not accepted.

One sister had a real problem. She had had a double mastectomy because of breast cancer. I had spent 2 weeks post op providing live-in support for her and her family because her husband couldn’t handle the reality of what had happened to his wife. We spoke daily about how she was feeling – physically and emotionally. For her, the idea that anybody would undergo the same kind of shocking surgery willingly was incomprehensible. She now gets that to do that willingly takes a motivation of extraordinary intensity. Doesn’t mean she agrees with it, or understands why the choice was made.

The challenge was not to agree with the decision our youngest sibling had made, but to honour it as a choice made freely and in a spirit of existential necessity. But it was not all about him. It was about all of us, as a family. You don’t realise how deeply rooted beliefs and presumptions are – until they are radically disrupted. It took intentional acceptance and adjustment to create a new normal. His father (my stepfather) did not adapt well. His religious beliefs were a barrier to complete acceptance. 

We struggle with realities experienced by others if they are unfamiliar and alien to us – especially if that also means they violate our sense of the proper and good. I do not think less of my siblings who call my brother ‘she’. I am saddened, but I understand. Such change is not okay for everyone.

I had no theoretical concern about transgender choices until it became part of my intimate reality. My reflex was to reject and deny, even while being supportive – because the idea seemed absurd. I was biologically male, and she was biologically female. Surely that was it? On deeper reflection I understood that was not necessarily the case. It was easy for me to accept my new brother because nothing had fundamentally changed. What I loved about my youngest sister was there, still, in my new brother. In fact, magnified because we now shared the extraordinary business of understanding what it is to be male – he as new experiences, me as a deep reflection. 

He has subsequently developed a genetic condition which robbed him of physical energy. He is now dependent on an electric wheelchair, courtesy of the NDIS. We have talked almost daily as he has struggled with getting a diagnosis; and diminishing capacity for physical activity. That’s taken around 5 years. It has been a psychologically draining experience – with fruitless and costly medical appointments and allegations of malingering reminiscent of the early days of encountering Chronic Fatigue Syndrome.

Adapting to disability isn’t easy for those who live with it. But it can be harder for those who are outsiders who have no permission to ask questions that help them understand and get a perspective. Having the right and the opportunity to ‘normalise’ radical expressions of being human is a rare thing. The weeks I spent supporting my sister after her double mastectomy gave me an insight few get. We had open conversations for a long time afterwards. Looking back, having those conversations was a privilege. To be part of such a profound personal transformation had a deep impact on me. 

That may seem a strange thing to say when someone close to you is suffering so much. But the reality is that acceptance of novel and radical expressions of being human is enhanced by proximity and exposure. This is why people whose family members have a disability are so often highly committed to supporting staff with disability. This truth applies across the spectrum of diverse attributes of being human, where inclusion is a concern. Familiarity can confer understanding, empathy, and acceptance more readily than good intent. Action is stimulated when genuine personal feeling of connection are aroused.

Change is hard for everyone. Its hard at every level to be authentically and practically inclusive. Its harder when you are distant from the existential drama of the lived experience – which is where most of us are. Our good will to be inclusive is a necessary foundation. But it is only a beginning.

What Do We Have to Do?

As a Social Ecologist I read widely in anthropology, religion, psychology, history, politics, economics, and sociology. This is the minimal requirement for a deep intellectual understanding of a contemporary perspective on inclusion.

Yeah? And I expect the average public servant to do the same? No. I simply want to emphasise the degree of complexity that exists on an intellectual level. There isn’t any way that this complexity can be conveyed in the standard learning and development opportunities expressed as various takes on ‘awareness’ courses – not even at a more ‘operational’ level of understanding. 

I am not saying such courses do not have value. But we should not inflate that value. It is limited to providing foundational awareness. After the course, what happens to continue and deepen the development of the understanding needed to be freely inclusive at every instance when such a response is required? Not much.

Somebody has laid the foundations, and the timber has been delivered. But we have no architect to craft the plan, and the workers are off doing important other things. How will the house of inclusivity be built?

A culture of inclusion is evolving. We are getting there. But that evolution must have a volitional and intentional element to it – if it is to move at the pace desired. We can act with goodwill, but without discernible skill. Or we can act with goodwill and skill.

My observation of Disability Inclusion advocacy is that the enthusiasm is rarely matched with skill. And not every skilled performance is informed by contemporary knowledge. The enthusiasm produces good results – but not at the pain points.

These pain points are where change seems to incomprehensibly stall. What seems evident to those excluded seems to be ignored by those who have the power to drive or facilitate change. Here, trust in an organisation’s commitment to inclusion falters, and may be broken – if not repaired and cared for.

In an age when there is a wealth of knowledge informed by sound research, Disability Inclusion can (and should) become a professional grade skillset. This is an insight essential to practitioners of Disability Inclusion. But it is more important to staff with disability. If your Disability Inclusion advocates are not professional in their approach, you are not being served to the extent that is fair to expect.

How to be a Professional Disability Inclusion Advocate

In November 2016 I suddenly found myself Chair of the DEN. At the last meeting of the year the then Chair announced his immediate departure to the NDIA. My immediate challenge was to rebuild membership. We were in a restructure, and we were bleeding members because of the transition to the NDIS, and disappointment with the pace of change. I had time to think about the sense of disappointment, which I had been feeling as well. At first, I continued the old way of doing things, even though they were not working.

In 2018 I attended the Australian Network on Disability (AND) annual conference in Sydney. I have written about this at length elsewhere (see the blog page – The DCJ DEN Story: The Leadership Challenge), so I won’t repeat here. This was my trigger event that helped me understand my objective – to make the DEN a professional body. Staff resource groups are welcomed as ‘amateur’ disrupters. They are tolerated and welcomed so long as they can be controlled. The idea that they can be equal partners in change is novel.

The idea of disruption is popular these days – usually in terms of technology. It means that the normal has been unsettled (disrupted), and when things settle down again it’s a new normal – the disrupter has been included as part of the normal. The technological examples abound – the smart phone being an exemplary instance.

This is where we must re-imagine Disability Inclusion in conformity with the UN, the Commonwealth government, and the State legislation. It is a right, not an act of charity to be doled out at the convenience of the donors.

But to make it a genuine disrupter it must be professional, disciplined, and driven by knowledge, backed by evidence.

Rights are immediately applicable, not when it is comfortable or convenient for organisations or workplace cultures to get around to it. It is certainly not the case that these rights apply at the pleasure of leaders and managers. And yet it is impossible to read the data reported in the NSW State of the Sector reports as meaning anything else – year after year.

Yes, leaders and managers are under pressure on their own account. But it is not clear why staff experiencing bullying and discrimination should continue to suffer affronts to their dignity in the service of operational outcomes – as if they are making a noble sacrifice for the good of all.

If managers and senior managers are experiencing undue pressure, their duty is to feed that back to the executive, and not to pay it out to subordinate staff. It gets paid out to the most vulnerable and least included individuals or groups. A glitch in senior leadership becomes a cross for less empowered staff to carry.

Here I am not ‘accusing’ leaders and managers of not doing their duty. I am pointing out a pain point which can be addressed by skilled and informed action. It is unlikely that any remedy will be instant; because the limits of our ability to adapt to new ideas and act upon them will come into play. But without informed and skilled development of a remedy, little will happen in a timely manner.

Effective Disability Inclusion must be a partnership of the key players (staff with disability, Allies and Champions and business units) in an organisation. It’s not just the role for a staff resource group. Organisations run on professionalism, discipline, knowledge, and evidence. If staff with disability (and staff in general) want an effective voice – to trigger Disability Inclusion (and Inclusion generally) as a disrupter – knowledge and skill are needed.

Inclusion is Hard, But it’s Not a Mystery

There has been fabulous research over the past 20 years on what it takes to be an inclusive organisation. Why then, is this research not integrated into contemporary understanding of what challenges are? Part of the answer is that the sector lacks a committed resource to track and integrate new knowledge as it emerges. Another part of the answer is the limited knowledge of leaders.

I have had rich conversations with Deputy Secretaries, Executive Directors, and Directors who ‘get’ the challenge acutely. They have degrees in, or read in, psychology. Of course, qualifications are not a prerequisite. Knowledge is. What is uniform about them is an intellectual curiosity – and a willingness to have conversations. However, they are in the minority, and they do not function in a culture that promotes inquiry and reflection.

My point is that at a professional level a functional insight into individual, group and organisational psychology is essential in a contemporary public sector. This is especially so if the pain points that impede full inclusion for staff with disability, and others, are to be addressed. 

Translating Good Ideas into Good Action

I have been listening to The Voltage Effect, by the economist John A. List. It’s a book about scaling – taking a ‘good idea’ and making it grow – and why trying to do so often fails.

List is among the growing number of economists who explore the economics of action – not just money related matters. Although money plays a big part it’s not the main game. Ill-advised actions generate costs and losses to businesses and governments. Smart actions generate benefits that can be expressed in monetary terms – but human wellbeing is the target. Behavioural economics is a field that is dependent on research and data. It gives us good data on what works.

Disability Inclusion is a great idea. It is scaling at a decent pace. But the actions that drive are a different matter. Not all ideas about how Disability inclusion are producing results when converted to actions. The NSW State of the Sector report produced by the NSW PSC acknowledges that there is a need for more work to be done, more effort to be applied to support the development of genuine inclusion for people with disability within the NSW public sector. That’s a call to action that gets drowned out in the noise of the mundane reality of the sector doing its core business. 

It’s a good idea in that noble vague sense that, of course, we must do better. Nobody disagrees with that.  But it has no shape as a strategy. It is informed by data – people reporting the pain of exclusion. But not by data of what works.

Conclusion

Inclusion is something that is a necessity on a cultural level, and a requirement in our laws. Few people would argue it is not a great idea. And there is steady progress being made.

However, the fact that we have Diversity and Inclusion teams, with their plans, frameworks, and strategies, tells us two important truths:

1. We need them because Inclusion is hard to do, and:
2. It’s harder to do than we thought.

But our beliefs about why it is hard are not informed by evidence we can use to make it easier.

I suspect there is a moral presumption that because inclusion is a good thing to do, good people will do it without difficulty. If that’s the case, there is abundant evidence that this is not a valid belief, and it should be abandoned. The goodwill in organisations is real, but it can be tapped only up to a point. It should not be relied upon as the primary source of change energy.

I don’t know that the answer is. I have spent a long time trying to figure out what the problem is – why good people let bad things happen to those who should be included, and resist changing the way things are done.

The answer lies in what research can tell us about what motivates us at individual and organisational levels. Some of that is available, but it’s not in a neat package labelled ‘How to Be Inclusive in 5 Easy Steps’. Maybe one day it will be.

In the meantime, we can be mindful that what we are asking of ourselves, and being asked of, is not easy or simple. There is no on/off switch for bias or non-inclusion. There is no magic silver bullet that will slay ‘the demon of exclusion’. There is no demon, no bug – just a natural human instinct that isn’t evolving as fast as our culture is changing. We are playing catch up. We can go faster if we apply the new knowledge and skills.

There’s a spectrum along which we are travelling along under our own steam. We are moving unevenly toward an ideal destination of full inclusion. How fast we move depends on what the sector’s organisational cultures create; and how we, as individuals, understand the challenge, and respond to it.