Month: January 2023

Introduction

This essay has been prompted by a confluence of 3 events. The first was a zoom hook up with my 4 siblings. Four of us have our birthdays in the span of ten days. We got talking about the support they gave me when I contracted GBS in 2008. I have little conscious recall of their involvement and, until that call, no appreciation of their experience.

Another event was falling into a bath a few days ago and being utterly unable to get out. I was lucky I had my phone with me and was able to call an ambulance. Mercifully I was fully clothed – that saved some dignity. It took maybe 20 minutes for help to arrive, and I had time to recall lying in a shallow bath in ICU in 2008 abandoned and forgotten. The bath was intended to be therapeutic. I was still paralysed. Because of my height my ankles were resting on the thin metal frame of the bath which was like a child’s paddling pool. There had been an alarm demanding all hands attend a crisis elsewhere in the ICU instantly. Suddenly there was nobody there. I have no idea how long I was left. The water had gone cold and the pain in my ankles was intense and I could not move my legs. 

The final event was starting to listen to Bessel Van Der Kolk’s The Body Keeps the Score. This is an excellent book on post traumatic stress. I am at a part where the author is describing a woman’s response to a horrific motor vehicle accident. She expressed no emotion in describing it. That was my experience when I collapsed with a sudden onset of GBS symptoms. I found myself lying on the loungeroom floor unable to move. I still have no coherent emotion about that experience.

In the ten months I was in hospital (3 in ICU and 7 in rehab) there was no concern ever expressed about my psychological wellbeing. Being suddenly paralysed was seen as a medical problem, not an experiential one. Worse, for me, I was flagged as not worth the effort and there were steps taken to ship me off to a nursing home. My family, bless them, fiercely repudiated that proposition. A year later I was back at work fulltime.

This essay is written for all who acquire a serious disability, and those who work with them.

We under-estimate trauma

I can now see several trauma points in my experience – suddenly collapsing with paralysis on my loungeroom floor; waking up with a tube in my throat and another up my nose (I wasn’t able to speak or eat); being abandoned in the course of being given a therapeutic bath; being written off as a hopeless case to be consigned to a nursing home (I had to fight to be taken to physiotherapy – at first I couldn’t get there myself).

At no stage in my 10 months stay in hospital was I offered any psychological support. The staff in the ICU were mostly caring and compassionate, but how I was handling what was happening was never raised. In a way that’s fair enough. An ICU is about keeping you alive – if that’s possible. The day I left I was given a standing ovation by the staff. Not a lot of folks leave the ICU with a pulse. The fact that I did was down to a team effort. They were acknowledging my effort. I was not able, at that time, to acknowledge theirs.

Looking back, I still think that psychological care is part of the rehabilitation process. I get that resources are thinly stretched, but I was not even advised to seek counselling. In fact, the local social worker, who was part of the effort to pack me off to a nursing home routinely refused my requests to meet on the grounds that she had no time. I got to see a social worker only when she was on leave. Psychological support was not part of the service.

I recognise, many years later, that I was traumatised by what I went through. I am working through that now. In the process I have come to understand just how traumatic the acquisition of a disability can be. I look back over my time as Chair of the DCJ DEN and I can see, in retrospect, the manifestations of trauma in the lives of many of my former colleagues who were DEN members.

Trauma makes you tough, but maybe also hard

In the absence of sensitive support, acquiring a disability demands intense personal fortitude. You can put up with, or take, a lot of adversity. But it can also make you seem vulnerable or even weak in terms of what is normal. You can become a target of people, usually in positions of power, who prey on perceptions of weakness – not understanding that experience of disability builds inner strength. This can set up a contest between predatory bullies and tough victims. This is a new insight for me. I wish I could share with the reader a handful of stories where the ‘victim’ triumphs. But even tough victims know when they are on a hiding to nothing – and its time to move on.

However, moving on is not always an option. Sometimes there is little alternative to staying put. That means being subject to conduct that induces trauma.  We are social beings and being subject to bullying – being denied inclusion and acceptance because of one’s perceived vulnerabilities – is a traumatic experience at a deep level.

The othering of people with disability

In my last post I proposed that we might re-envision disability in the context of an exploitable vulnerability. There is sound anthropological evidence that even way back our hunter gatherer ancestors cared for their community members who had acquired a disability.

We should not marvel that we do, rather that we do not. We have a choice to widen our sense of ‘us’ to include those who are not ‘like us’. Indeed, our ancestors were far more inclusive among their own than we are. The instinctive impulses of what we might now call tribalism may have discouraged inclusivity beyond one’s own group, but now we have made that distinction between levels within what should be our own.

Wars cause trauma to body and mind in those who have served on our behalf. Soldiers from the first and second world wars have returned from service with disabilities (I worked in Veterans Affairs 3.5 years, and I am only working this out now) – and issues of accessibility are still being addressed. Previously the inaccessibility of the ‘normal’ world wasn’t a concern for the injured and the maimed whose unsightly breech of the ideal norm rendered them unfit to participate. We did not honour those who served by making what they had defended more accessible to them. Our response to accessibility is rights-based, not duty-based.

The trauma of war and war-related physical and sensory disability has been folded into cultural myth of the norm – what is the tyranny of ‘ablism’ (the ideal is triumphant and the damaged humbled and rendered invisible).

Thank you, war vets, for PTSD

It has been the efforts of psychologists caring for war veterans who have broken through the myth of the ideal to find an idea of trauma we can all share.

I worked in Veterans Affairs in the late 1970s. Psychological disabilities were recognised under multiple terms, including ‘insufficient personality’ – code for ‘not man enough’ to handle being torpedoed twice and ending up in the water with bits of your shipmates in shark infested waters and come back smiling.  

Work with psychologically distressed veterans has come a long way in the last few decades.  It has led to deeper, more nuanced, idea of trauma. We now understand that trauma – from post-traumatic stress (drop the ‘disorder’ now) concerns us all.

Conclusion

Unless you have a particular interest in trauma you may still think that PTS(D) means only life-threatening experience. it is certainly true that physical life-threatening experiences can induce trauma.

But now we also recognise that experiences that threaten our psychological/existential being are also traumatic, and this trauma can infest our bodies and minds in insidious and destructive ways. This is new stuff. 

Acquiring a disability can be traumatic, so can its treatment, and so can the process of adaptation and adjustment – including exclusion and bullying.

The surface perception of a heroic smiling person in a wheelchair can numb us to the struggle. I love the Special Olympics, and I am awe of the performances of many of the athletes. But the surface gloss often conceals a foundation of trauma.

As I learned from my own experience, acquiring a disability can be traumatic without really understanding what that means. For those who work with people with disability, please appreciate that there’s a depth to the person’s expression of their personality and character they may not want to express, or, if they do, feel comfortable and safe in doing so.

Trauma impacts many people and I do not intend to assert that people with disability are a special case. This is just the focus of my work.  Please do read current work on trauma to ensure your understanding is up to date.

As well as The Body Keeps the Score, I suggest The Myth of Normal: Trauma, Illness & Healing in a Toxic Culture and In the Realm of Hungry Ghosts: Close Encounters with Addiction for starters. As usual I show the Amazon link because it has hardcopy, ebook and audiobook options, but do please support your local book shop if you prefer hardcopy.

Introduction

We must periodically review what we think we know about Disability and Inclusion to avoid becoming stuck in habits of thought that narrow our vision and restrict our depth of perception. In fact, apply this to anything. We all need a refresh, no matter what field we are in. 

That said, when we feel burdened by demands such a refresh is not a popular option and I could be seen as one of those annoying people who blithely expects others to do more and more with less and less time and attention – two deeply valuable assets. 

I confess this is a risk, but it would be disingenuous of me to suggest there is an easy pain-free alternative. 

In this essay I ask only that you read it and take away one thought to chew on. 

The idea of neurodiversity and the Bell Curve.

My favourite inclusion podcast – Leading with Empathy & Allyship – is a constant source of inspiration. The Power Of Neurodiversity In The Workplace          With Tim Goldstein,broadcast on 23 Feb 2022, got me thinking.

Goldstein was making an important point. The term neurodivergent, in popular use, was often taken to imply something was amiss. We ‘diverge’ from a true or accept path. But he notes, we are all different. Its just that maybe 70% of us, who form the majority, might be considered to be neurotypical. That doesn’t mean ‘ordinary’ or uninteresting. All it means is that there is a spectrum, and the majority creates a ‘normality’. The minority adds to that ‘normal’ to fill in the range [spectrum] of being human. We are all diverse expressions of being human. Some of us may be a long way from being normal or typical, but we do not diverge from being human.

The Bell Curve is one of the most useful ideas to play with. Simply put, many things about being human can be mapped to a standard geometric curve which has a middle [normal/numerically dominant] and extremes [often expressed in negative or positive terms unfortunately] inhabited by a minority. The extremes are taken to polarities. The one we may be most familiar with concerns intellectual ability. At one extreme we have intellectual disability and at the other we have genius.

You can apply the Bell Curve to just about any human attribute as a useful guide to understanding that a diverse spectrum of human attributes is the norm. We can apply multiple Bell Curves to multiple attributes, and we are at different places on the curve for each attribute, normally. There are, no doubt, a few people who are extreme expressions for all measured attributes – at either extremity.

Neurodiversity is a shorthand way of saying we think differently, and some people do so in ways that extremely different from the majority. But we could also talk in terms of [pick your attribute]diversity. It is here we need to avoid a trap we unconsciously fall into. Diversity isn’t a merit scale. But we assume it is. It’s a scale of difference while retaining an overall similarity.

To DIE for

Normally proponents of Diversity, Equity and Inclusion [DEI] don’t have a philosophical reason for arranging the letters of the acronym in any particular way, except to avoid having them read DIE, and IDE isn’t attractive – neither is EID.

I want to argue that D+I=E makes better sense. Here D is the spectrum of being human, regardless of what attribute/s we focus on; I is embracing that Diversity; and E is how embracing that Diversity is expressed.

The acronym doesn’t work, but the formula does.

Disability and Diversity

Many of us will have our expression of some human attribute impaired or impeded in some manner, whether temporarily or permanently – and it may not matter most of the time. Being tone deaf may rule you out of some few activities or roles, but not the many others. 

The word disability is very useful to convey an important idea, but we use it selectively, and often adversely, to mean more than it needs to mean. It should be specific to a circumstance where an impaired expression of a human attribute leads to unfair disadvantage and exclusion.

Here I am not referring to social model of disability, but the idea itself. There are a few human attributes in relation to which we are instinctively discriminatory. Physical/sexual attractiveness is perhaps the most potent. But disability may also trigger unconscious adverse reaction in some people.

Depending on our psychological health [especially trauma related conduct] and our social conditioning, or status, we may also exclude or bully people who we see as vulnerable or weak.

People whose physical appearance or behaviour may signal they are vulnerable or weak may be people with disability. There is one area in which this is sadly very evident. The 2021 NSW State of Sector Report [the 2022 Report is late for some reason] published by the NSW Public Service Commission reports “Rates of self-reported experienced bullying, by different employee groups” on page 47. Staff with disability show a rate higher than 24%. Aboriginal people report over 20% and LGBTIQA+ people report over 16%. 

We know from studies on bullying that one’s line manager, and next up manager are the major sources of bullying.

A human attribute that can be described as a disability may impact work performance, necessitating an adjustment or an accommodation. But the same cant be said of an Aboriginal person or a LGBTIQA+ person. 

Is it the need for an adjustment or an accommodation that triggers a higher level of bullying for staff with disability – or is there something else at play?

Why bullying matters

By its nature bullying is about perceptions of vulnerability and the exercise of power. It excludes the victim from any sense of equity. There will be some perpetrators of bullying whose psychological make up render them unfit to be in positions of power over others, but bullying is also the product of unconscious conduct. It is not intentional and may not be recognised as bullying by the perpetrator. The problem here may be a lack of self-awareness and maybe a poor response to the stresses of leadership and responsibility.

It is possible to engage in bullying, regardless of why it is triggered in the perpetrator, because human Diversity is not recognised or acknowledged, and because Inclusion is not an intentional practice.

Bullying is the ‘canary in the coal mine’ of organisational culture. Where Diversity and Inclusion awareness and practice are low the risk to the health and wellbeing of vulnerable staff is higher.

Conclusion

There is no simple solution. I am not suggesting we re-envision disability as perceived vulnerability or weakness, but let’s not forget that this is the root of problems for many.

The good news is that the Bell Curve tells us that most folks are likely to be responsive to calls to embrace Diversity and to be Inclusive. The bad news is that those who are not are often likely to be managers. The unfortunate reality is also that empathy does not always survive transition into roles of power over others.

Precisely why management and leadership roles must require ‘power over’ another is a question that merits deep thought.

Here it is not my intent to give managers a hard time. Between work pressures, personal life realities and the expanding demands placed upon managers to be across the many changes in social and cultural values, being a manager is no easy role these days.

But there’s another vital dimension to consider. A failure to embrace Diversity, practice Inclusion, and treat people with Equity is less likely to occur if everyone else is DIEing.

What’s your takeaway to chew on?

Introduction

I was humbled to read in The Guardian of the death of Hale Zukas, a name I did not know. The title of this brief message is a quote from him.

Hale was a hero of Disability Inclusion who activism in California laid the foundation for many of the means of access we enjoy today.

A link to The Guardian’s article

Do please read this.

https://www.theguardian.com/society/2023/jan/08/disability-rights-warrior-hale-zukas-life

Conclusion

We need reminding, now and then, about what is possible when we have the heart and the imagination to dare demand equality.