Category: Uncategorized

Introduction

I am guilty of this. A former colleague with a disability recently chaired a major meeting and the report that came to me was that he did a very impressive job. 

I was delighted. But on later reflection I was forced to confess to myself that I had never imagined him doing that role. Then I realised that I didn’t know enough about my former colleague to have formed an opinion based on knowledge. I had simply allowed a sly and sneaky prejudice to impose a prejudice upon my judgement. 

The prevalence of low expectations

When I came back to work after an 18-month absence after recovering from GBS I had no idea what I could do, but was determined to find out. My manager decided she knew and helped me out by doing things she thought should be done – without telling me. 

The thought wasn’t appreciated. What appeared to be consideration for my limitations at the time was a presumption without consultation. On one project this ‘assistance’ ruined a tracking system I had set up to ensure the security of over 130 tender responses. It took several days to get things back under control – with the aid of a temp worker who had been engaged with no assessment of my need. As it happened, I did need her to help me fix the wrecked tracking system, but not much else – other than carrying boxes of responses. 

Just ask

Anxiety about how a staff member with disability will perform is understandable. But converting anxiety into intervention without confirming that there is even a problem makes the issue more about the anxious manager than the person who should be the focus of concern. 

It’s simple just to ask whether and how a disability might impinge upon the performance of a task. That said, it’s not an easy thing to do if you haven’t established an empathic relationship with the staff member. 

There may be support needs, but they also may have nothing to do with the disability. The disability may trigger only a need for an adjustment or an accommodation to ensure accessibility. 

The risk of low expectations

I think we can all be guilty of low expectations – but that isn’t the problem. It’s more that we remain unaware of them and that we modify our relationship with a colleague with disability accordingly. 

The worst case scenario is that we create a distance between us and them. We assume but say nothing. They sense our distance and assume they are not liked, respected, or well-regarded and keep their distance. 

It’s a standoff in which neither party is aware of how the other feels. The consequent relationship is cool. This matters because relationships in a team are ideally warm – mutually respectful and professionally and personally empathic. Sometimes there is more warmth between a manager and team members who have things in common on a personal level. This can magnify the sense of coolness for anyone who is already in the outer zone of inclusion. 

Low expectations lead to isolation

Probably the most persistent issue I dealt with as DEN chair was the sense of isolation and ‘othering’ that came from the imposition of presumptions upon the colleague with disability. This included a persistent presumption of inability or unwillingness to be compliant with what were thought to be ‘reasonable’ expectations. 

A vision impaired colleague discovered their manager had directed team members not to help, so they could learn to be more independent. In early 2020 I arranged a consultation between staff with sensory disabilities and IT staff. There were 5 blind colleagues who came. Two had dogs and the others relied on white canes. All came by themselves. I am not sure how much more independence would be expected. This manager was unable to distinguish between can’t and won’t.

A colleague with a visible mobility disability was, despite their substantial experience, overlooked for a wide variety of opportunities that were offered to less experienced team members. The disability was visually confronting to some.

A colleague with impaired hearing was excluded from roles requiring interaction with others and given relatively simple tasks that could be performed in isolation, despite their significant level of education and ability. This created a negative feedback loop. The colleague with disability lost enthusiasm for the workplace environment and that lack of enthusiasm was interpreted to be evidence of low ability. 

The absurdity and injustice of presumption

A few years ago, I visited an office I used to work in for a meeting. There was a fire drill. Sirens were going off and people were making their way to the fire stairs with the usual level of enthusiasm. 

I don’t do fire stairs, so I sat patiently waiting for a fire warden to arrive. I had my Canadian crutches leaning on the wall beside me. A woman approached me and told me very slowly that I shouldn’t be alarmed. There was no real fire. It was just a practice in case there was a real one. She then asked where she could find my carer. I smiled and thanked her. I then told her I was a Senior Project Officer and I worked for the department. Very red faced! She quickly left. 

Tales of presumptions of cognitive impairment on the evidence of a physical disability are common. 

But even more common is the assumption of cognitive impairment when a person discloses a ‘mental illness’. The term itself is partly to blame, but the larger problem is the lack of understanding of what it means. We can try to sugar-coat the message by renaming it – a psycho-social disability for example. But the knife of discrimination born of ignorance still cuts deep. 

I can’t think of a more widespread and persistent blight of low expectations than those imposed upon colleagues who let it be known they are living with a psychological injury. It may be depression or anxiety (the 2 most common) but they do not lead to cognitive disability or conduct disorders. 

The hard discrimination of low expectations

Many of us live with psychological injuries that will never trigger a need for us to get a clinical diagnosis. As well as living with the aftermaths of traumatic experiences we go through rough times in our lives when we struggle to stay focused and motivated. Sometimes we can barely hold things together. 

I saw this just recently when my stepfather unexpectedly died. I have 4 siblings, 2 of whom were his children. We all reacted to his death in different ways. For one sibling it was a particularly strong existential shock and their ability to work was wrecked for a few weeks. 

We understand that ‘normal life’ has many challenges that can be difficult to meet with aplomb. Mercifully most of us have an off switch which triggers after a decent interval. But some live with a broken off switch. They feel bad persistently and they struggle routinely to maintain an even keel. 

We’d never know who they are because there is no visible sign. They may or may not have decided to get clinical help. And if they do, they are unlikely to let us know. 

But the few who do are so often hit with a response that is bewildering and distressing. Their competence, hitherto unchallenged and even lauded, is called into question. 

The ignorance and unreasoned fear of others is projected upon them – and they really are not the ones with a ‘disabling’ problem. The loss of empathy and compassion is a far greater concern.

Conclusion

Low expectations are triggered for a variety of reasons, sometimes justly, but often not. Disability is only one trigger. Racial, gender and religious discrimination can do the same thing.

We humans are constantly judging and assessing others for a variety of reasons – mating, competing, exploiting, friendship, cooperation and so on. 

In the workplace assessing competence is necessary – and it goes both ways. Managers must assess the competence of their team, and team members must assess the competence of their fellow team members and their manager. It goes on all the time. 

It is a fundamental insight into our psychology that we over-estimate our abilities. When we judge another person there is a high chance of being wrong – and having no idea we are. 

It is also an established insight that leadership roles trigger less empathy for people in subordinate positions than for fellow members of the leadership group. 

Colleagues with disability are subject to the blight of low expectations that unjustly impose upon them restrictions on what they can do well and the esteem in which they are regarded. 

This can become a feedback loop that traps them. Not everyone with a disability is aware their performance, status and engagement are impacted by how other people have imagined their ability and capacity.  As it impacts them, the negative experience can trigger responses that become a reinforcement of the low expectations. 

Few managers are aware of their role in initiating and perpetuating this negative feedback loop. Staff with disability who are subject to low expectations and the discrimination that brings may not always react with an articulate and confident response. They may be angry, frustrated or disappointed and show it – inviting further negative feedback. 

When a colleague with disability tries to step out of the low ability mould that has been imposed upon them, their action is not always welcomed. Sometimes it is resisted – and firmly so. 

This recent news about my former colleague reminded me just how easy it is to impose that ‘soft discrimination of low expectations’ and it was an even bigger reminder that none of us are immune from being the one who makes that imposition. That’s not a great thing for a champion of inclusion.

But that’s the reality. Whether you identify as a champion or an ally your normal human responses remain active and in need of periodic self-critical reflection. That’s a hard habit to develop in isolation. We are better off engaging with those we are reflexively likely to impose our low expectations upon. We are better off in a community which accepts the need for, and practices, self-critical reflection as part of process of creating inclusive workplaces. Such a community is created intentionally. It does not evolve independent of intent.

Introduction

Having impaired grip and manual dexterity means that much of what was accessible becomes impenetrable and unusable. Over the years I have accumulated a small number of essential aids that help me crack all forms of packaging, carry stuff, and generally encounter life with a sense of comfortable and dignified utility. 

Multigrips

It is astonishing how necessary grip strength is. There’s a mechanical element to packaging with a degree of difficulty that is set several levels higher than that attainable by the manually less competent.

These are tools with a sliding component that varies the size of things that can be gripped. I have one in the kitchen, one in the car, and two in my room (large and small versions). I use them mostly to open bottles and any containers with small lids that don’t yield to gentle efforts – especially those fiendish ‘childproof’ ones. I get that keeping some products away from kids is sensible, but in a paradoxical way this safety feature also makes the product inaccessible to intended users. You can find examples of multigrips from Mitre 10 here.

I also have an array of jar opening tools which can be found at most disability aid stores. They are not, however, as flexible as a multigrip. 

Rock climbers folding knife 

Knives are handy for gaining access to any number of forms of packaging or dividing things others can simply tear or pull apart. The rock climbers knife folds and opens without needing to grip the blade the way you do with a regular pocketknife (flick knives excepted). They are designed to be used while wearing gloves. I can open a blade by resting the knife on my knee and using the heel of my hand to twist the blade out.

I have one in my outdoors shoulder bag, so it’s always with me when I am out – something airport security people were not happy with [that caused all kinds of bother when I insisted it was a tool, not a weapon and it had to go into my luggage – I hadn’t flown for 20 years and was unconscious of the anxieties]. I have another in my room with a cord so I can put it around my neck. Here’s an example of this kind of knife.

Neck pouch for my phone

I can’t do pockets so carrying my phone can be a challenge. My Tasmanian sister made me a fabric pouch (actually 2 – because they do need to be washed) with a strap I put around my neck [thank God for necks – I hang a lot of stuff round mine, and I’d be lost without it] so I can carry my phone with me at all times at home. No, I am not a phone junkie – it’s my universal information device and emergency communication means. I move too slowly to leave a phone lying around, and even with a Bluetooth headset I would have to stay in range – which is tricky in my home because of what the walls are made of.

Shoulder bags at home

The same sister made me a couple of soft cloth shoulder bags. Because I use at least one crutch at home I have only one hand that doesn’t work all that well to carry things. That doesn’t leave me with much capacity. The shoulder bags make a huge difference. I can carry 2 things at once, often more.

On this theme I had a large shoulder bag made by a former backpack maker so I could get a decent number of things at the supermarket at one go. This saved the headache of wrestling with shopping trolleys, and also meant I was independent in getting shopping from the car to the house – in one trip.

Thermal mugs

Regular ceramic mugs are useless for me. First, I can’t use their handles – they just slide through my fingers. Second, if I hold the body of the mug, I get heat stressed fingers. 

Back in the mid 1990s I bought a double wall stainless steel mug which I have loved and used long before I got GBS. It’s still great. I can slip fingers between the body of the mug and the handle and there’s no problem lifting or holding. I have never found anything like it since. 

Also, before GBS, I bought a Thermos travel mug. It has a screw on lid – so I can fill it with coffee, slip it into my shoulder bag and carry something else from the kitchen (like cheesecake). The handle is open at the bottom and the gap is wide enough for my hand to be comfortably supported as it grips the insulated body. This is a no fear of dropping mug. Here’s a current version from Thermos that has the right handle and is double-walled stainless steel.

When I was working in an office I had a double wall titanium tumbler – 450ml. Completely insulated, light and fairly easy to grip because of its size. Titanium products aren’t cheap, but they are light, and they don’t break. I recently bought a plate that is way easier to carry because of its shape. Here a link to a titanium cup. The link can also take you to plates.

Trainee chopsticks 

These have a hinge-like springy device on the top, so gripping and using them is a breeze. It’s what they give kids, apparently, but they are also marketed for adults, so you don’t have to be the only person with a fork – and still preserve your dignity. Here’s a set from Amazon.

iPhone

What praise can’t I heap upon this wonderful device? It was introduced as I was recovering from GBS and made so much of my life livable in ways unimagined before. Calling it a phone is like calling your home a kitchen. The phone is one of the lesser functions. It’s my diary, my notepad, my clock, a primary part of my music system, my audiobook and podcast player, my email and internet, my falls detection and emergency communication device, and etc. 

Aftershokz headset

Blue tooth headsets have been a godsend. I am no longer tethered to the device with cords that are a nightmare when walking with crutches. And anything you stick in or over your ears has to be removed for comfort, functionality or safety. 

My Aftershokz Opencomms are bone conduction, so the sound transfer happens via the skull bone in front of the ear. They are put in place in the morning and stay all day hardly noticed. 

No more switching in and out of the ear, no impediment to hearing. They are safer, more functional and less intrusive than any other headset I have used. I have had AirPods and still have a Bose over ear set I prefer for listening to music. 

And no, I am not being sponsored by Aftershokz. I mention them by name only because I am not aware of other bone conduction sets and can’t speak to them. I will never go back to in-ear devices.

Conclusion 

I spent my youth in the Tasmanian bush. When you have to carry everything, you need you get fussy about what you need and what you carry. It’s got to be necessary and functional.

A lot of the things I now use and esteem have come from camping and bushwalking retailers like Mountain Designs,  Drifta and Alton.  These products are light and tough. They are not cheap and are over-specified for home use. But they suit my grip and dexterity needs without screaming ‘Disability’. They are more about universal design. They call out ‘Utility’.

I am, of course, obliged to seek out disability specific aids, because some needed features are compensatory and would impede ‘normal’ capacity. But it is surprising, when you go exploring, how often products that are designed with a specific purpose in mind have a universal application.

There’s a difference between the dignity of independence and dependency that comes down to what tools we can discover or craft – and whether their use signifies disability or utility. It’s a huge difference at times.

Introduction

I have been rediscovering John Farnham. Well, I have been doing penance for ignoring him in the 1980s – I was in a different cultural space. His performance of Help in company with the Melbourne Symphony Orchestra 1989 is something special – see https://www.youtube.com/watch?v=dv54giOSRKs

Of course, I know the song as the Beatles original [1965], but as the lyrics say that was when “I was younger, so much younger than today / I never needed anybody’s help in any way.” And now “… those days are gone and I’m not so self assured / Now I find I’ve changed my mind I’ve opened up the doors…”

The personal shift, in acquiring a disability, is profound…and humbling. You go from the illusion of independence to being utterly reliant on other people for your survival in this world. The recovery of some measure of competence was, for me, a slow struggle. I needed help along the way.

Listening to John Farnham, now multiple times, reminded me of that journey. I want here to reflect on disability and the idea of help.

Get out of our way

Before I got hit with GBS in April 2008 my only sense of disability outside the professional sector in which I worked was an assertive and cranky sense of frustrated impatience. I had no sense of connection with those who made such demands back then. I do now.

I recall a publication called Made You Look which featured a woman with a double below amputation [if I recall correctly] holding a skateboard. Back then disability was about getting attention – getting people to take the reality of being a person with disability seriously.

The unspoken message, well it was at least poorly articulated, was that ‘we need your help to make our shared world as accessible to us as it is for you. We are not asking for anything extra or special – just equal opportunity.’

I think now that we have lost that key message of ‘help’, buried it in blather. My favourite inclusive podcast is Melinda Briana Epler’s Leading with Empathy & Allyship. The essence, the heart, of Melinda’s show is that the excluded need help to be included. We can’t do it on our own. It’s a partnership, a collaboration, an alliance.

Exclusion is structural in physical, cultural, and psychological dimensions. It is not, and was not, inadvertent. It was intentional and part of the foundational philosophy of our culture. The Old Testament says, in Book of Deuteronomy: Thou shalt not sacrifice unto the LORD thy God any bullock, or sheep, wherein is blemish, or any evilfavouredness: for that is an abomination unto the LORD thy God. [Deut 1 [1]]. In contrast in 2 Samuel we find:  But in all Israel there was none to be so much praised as Absalom for his beauty: from the sole of his foot even to the crown of his head there was no blemish in him. [Deut 17.1 [1]]

Putting away the blemished is what we did, as a civilisation. We were responding to a religious ideal that was, for centuries, one of the guiding principles of our culture. Things have changed. We have matured morally to the point where we cast off values formed over 3 thousand years ago. But values baked into our culture over such a span do not dissolve so quickly, even under a shower of moral enthusiasm. Change is slow, and we need your help to maintain the momentum. 

Now the message isn’t “Get out of our way.”, but “Please walk with us.”

Asking for help isn’t easy

Way back in the late 1980s I, and a few friends, connected with a woman in a wheelchair [that’s how we saw her]. She was living in an isolated rural property, and we tried to help her, but her reactions progressively put us off. Now I am ashamed of abandoning her, but back then she exhausted our well-intentioned, but maybe inept attempts, to be her friend.  That failure haunted me. What happened to her? I have no idea.

But I learned, I think, from that experience, that asking for help must come from a foundation of understanding that because disability is part of the spectrum of being human it must be a shared experience. We must reach out and you must respond with an embrace. Back then both of us did our parts badly, ineptly. The need for help was there, and so was the desire to help, but we managed to screw things up badly – on both sides.

Reaching out isn’t a signal of weakness, but a desire for mutuality, as is the response. When I was paralysed from the neck down for several months, I lost no sense of my vital humanity. I was complete and full of integrity as a person. That was a fierce determination at the time. I was shocked by my sudden reduction to being little more than a flaccid body with tubes inserted on the outside. Inside I was undiminished – freaked out but determined to go on.

I survived because I got help to breathe, take in nourishment, expel waste, and to begin to recover capacity for coherent action. Later in the Rehab Ward I got help to move in an increasingly effective way.

Help isn’t about can’t, but need and aspiration

We help each other all the time because we want to foster success. Its not about responding to weakness but building on strength. But if the foundation of action begins from weakness [of body], as was my case, reaching out is still an act of strength [of spirit] – albeit at an early stage. For me being able to reach out was literally the product of 4 months of physiotherapy to help move my arms. It took longer to be able to grasp what I was reaching for. 

We humans are naturally communal. We are hardwired to belong, to be included. When that doesn’t happen, it triggers the potential for a trauma reaction.

People with disability can experience such a prevalence of non-responsiveness to their efforts to reach out that they cease to believe they are going to get a response.

When I was chair of the DCJ DEN I once said that we were not “a union of cranky cripples.” In my time as a union delegate often the militant demand for [a genuine] entitlement generated more conflict, wasted more time, and damaged more relationships than any form of relationship other than one based on intentional conflict. We were all pretty inept back then. Even the goodwill that offered was often squandered in a fog of self-righteousness. Struggle can become the fabric of identity and when that struggle fails to rise above anger and conflict the identity is injured and impaired.

My point was that pursuing a single focus on entitlement delayed or denied was counterproductive. The whole purpose of the DEN was to stimulate the desired changes, but that includes reminding the organisation and our colleagues that we were one of them – we belonged. Asking for help is what you do if you belong. Demanding an entitlement is what you do if you don’t feel included or embraced as ‘one of us’. That’s where we needed to find agreement – among ourselves and with our colleagues.

The goodwill toward staff with disability became powerfully evident to me. There was, as there is in every community, a portion that was disinterested, and a smaller portion whose attitudes were bordering on, or were actually inimical.

We needed to harness that goodwill to work on the more complex areas of behavioural, culture, policy, and practice change. Even with all the goodwill in the world, these are still slow evolutionary changes that require attention, commitment, and effort – the Help needed.

Reflecting on asking and offering 

Then there’s – And now my life has changed in oh so many ways / My independenceseems to vanish in the haze / But every now and then I feel so insecure / I know that I just need you like I’ve never done before. This would have been my theme tune in April 2008. But at the time I was incapable of asking for help or music. My need for help was total. It was given with such dedication and determination, thinking about it 15 years on, still triggers a deep sense of gratitude. Mind you, it wasn’t all niceness. There were some instances of contest over attitudes and values along the way.

The contests were caused by both sides – health care management and a fiercely determined patient. There was mutual misunderstanding, although the cause of some contestation was somewhat more serious.

I was greatly interested, then, in observations that sympathetic executives and managers did nothing because they feared offending by engaging staff with disability ineptly. I understand that. I have felt the same thing myself – but quickly overcame it because I also had a disability, and I could dare to inadvertently offend. But that’s not a reflection of a helping culture – asking and giving. Rather it’s the fall-out from a sense of entitlement coming from a place of frustration and exclusion. It’s not a good thing that those who want to help fear saying so, lest they offend.

How can we expect offers of help if the person extending a hand fears it might be bitten. That kind of offer needs the same safe place we need to create to ask freely and fearlessly – from inside the embrace of ‘us’.

Conclusion

People with disability are not victims of their disability. They may see themselves as victims of fate or destiny, though. They may also be victims of a misguided and anachronistic idealism which devalues those who are blemished and champions the unblemished. But this is a long way from the inclusive and supportive sense of community that is hardwired into our psyches, and our brains.

We are recovering from that, progressively restoring the inclusiveness of our sense of community. But it’s a slow business – as overcoming any bad habit is.

The lyrics of Help can be sung only to a friend – to one of ‘us’. There is a song called I Will Help You. The lyrics are pretty sentimental, but they say, in part–  I will stand by you / I will help you through / When you have done all you can do. The last bit is bad in this context, but then it gets seriously saccharine.  Its more about substituting than collaborating – the intent is good, but the insight is wanting.

Maybe that’s the point. We ask for and offer help in a muddled way and the response often fails to interpret what we meant to say. The solution is maybe to collaborate on crafting lyrics to a new song – Work With Us Together [okay awful title, but you get my drift].

Below are the lyrics to the original Beatles song – but do watch John Farnham’s performance, and maybe sing along.

Help, I need somebody

Help, not just anybody

Help, you know I need someone, help

When I was younger, so much younger than today

I never needed anybody’s help in any way

But now these days are gone, I’m not so self assured

Now I find I’ve changed my mind and opened up the doors

Help me if you can, I’m feeling down

And I do appreciate you being round

Help me, get my feet back on the ground

Won’t you please, please help me

And now my life has changed in oh so many ways

My independence seems to vanish in the haze

But every now and then I feel so insecure

I know that I just need you like I’ve never done before

Help me if you can, I’m feeling down

And I do appreciate you being round

Help me, get my feet back on the ground

Won’t you please, please help me

When I was younger, so much younger than today

I never needed anybody’s help in any way

But now these days are gone, I’m not so self assured

Now I find I’ve changed my mind and opened up the doors

Help me if you can, I’m feeling down

And I do appreciate you being round

Help me, get my feet back on the ground

Won’t you please, please help me, help me, help me, oh

Introduction

The term ‘mental illness’ excites confused passions. The title of this post was expressed by a friend talking about their brother. He was “suffering from mental health.” I knew what she meant, but it was what she said that struck me. I had heard it several times before – but always under circumstances when it was wisest to let it pass, and say nothing. 

We can talk easily about a person living with, or experiencing, what is popularly called ‘mental illness’. But when we are referring to somebody with whom we have intimacy or familiarity things change. Suddenly saying they have a ‘mental illness’ is hard to say.

I was recently talking via email to a friend diagnosed with a psychiatric disorder about a person he was interacting with. He observed “Yep. Dude’s got some issues, but haven’t we all?” My friend may have a diagnosable condition, but ill? No. 

Personally, I detest the term ‘mental illness’. I worked in psychiatric hospitals back in the early 1970s and I have worked with the operators of what were called ‘licensed boarding houses’ before the NDIS. Many of their residents had long term psychiatric conditions controlled by medication. I don’t like the term because it bundles up a spectrum that covers damaged brains, the victims of trauma, and people who are highly sensitive. The idea that the term ‘mental’ covers all is archaic and cruel.

I am not qualified in psychiatry or psychology, so I want to make it clear that what follows is a philosophical musing on the idea of ‘mental illness’. It mustn’t be mistaken for anything other than a personal opinion offered by a person who has had a lot to do with people diagnosed as having a ‘mental illness’.

What are we talking about?

Three of the smartest people I know would fit the category of having a ‘mental illness’. How does that work? The term implies a cognitive disorder. But these are super smart people. What they have difficulty with is processing emotions. Well, except for one – the one I quoted above. He just has experiences that psychiatry has decided are evidence of a disorder.

I am not going to debate whether such experiences are a disorder to the extent that he is rendered dysfunctional. But certainly, the diagnosis and subsequent treatment achieved that. In the time I have known him [a decade or so] he has been somewhat eccentric. But not once has he indicated disordered thought. Even we if grant his experiences are disordered, there’s a difference between the experience and his reaction – and it’s his reaction to his experiences that got him into bother – and that a long time ago now. These days you wouldn’t know. You might think he’s a bit eccentric, but nothing else. In fact you’d be hard pressed to meet a nicer, kinder, more honest guy – and with a razor sharp intellect.

Trauma can do a potently destructive job on our ability to manage our emotions. The harm done by the trauma is an enduring wound. We are now learning that our response to that wound does not have to be reflexive. We can learn to manage it.

When I was in 6^th grade my music teacher insisted that I audition for the school choir. I politely explained that I had no interest in participating in the choir and so declined to audition. She insisted I audition, and I persisted in declining to do so on the obvious logic it would have no consequence – being in the choir was a voluntary after school activity and I had better things to do.

So, I was hauled to the front of the class. We had an escalating scene of her demanding I sing and me declining to do so. Eventually she was screaming, “Sing!” at me, repeatedly. I refused. She finally quit, but the damage was done. I haven’t sung since then, and when people have urged me to sing, they trigger that traumatic memory. It’s a curable condition, of course. I just haven’t felt the motivation to seek the cure.

Not singing does not make me dysfunctional in most aspects of my life. In fact, it’s a fair guess it’s less than 1%. But it’s still an ‘illness’ in the sense that it’s an enduring unhealed wound that continues to impinge on my life experience. The trauma is easy to recall.

I can see that for some my trauma is a ‘mental’ dysfunction that could be overcome by reframing or reprocessing my experience. But it’s my emotional reaction that is the issue, not how I think about it. Intellectually I have tackled the experience – but the wound, the trauma, is emotional, and it persists.

I am of a generation who grew up to dismiss emotions as weak reactions expressed by children and women – irrational essentially – an abdication of mental responsibility. That point of view is, of course, utter nonsense. You will not find it in contemporary psychology. Males expressed emotions only under tightly controlled and approved conditions.

The idea that it is feelings and not thoughts that mess us up is relatively novel. I should here observe that I do think that thoughts can be a problem, but that takes us into the profoundly complex business of the nature of belief – and this is no place for that conversation.

My point is, in essence, that its emotions that trip most of us up. Serious psychiatric conditions like schizophrenia or psychosis are rare in our workplaces. Whether they are ‘mental illnesses’, or brain disorders depends on whether you subscribe to the mind = brain proposition. I don’t. This is important because there’s nothing more futile than arguing at cross purposes because you have failed to agree on terminology.

I suspect that saying a person is “suffering from mental health” is an intuitive disagreement with the mind = brain idea, but without confident awareness. I think what is labelled ‘mental illness’ is mostly some form of emotional trauma – and hence something many of us know to some degree. 

The upshot is that we struggle to understand what our terminology means and what the implications of our meanings are. This is made worse by an horrendous history of madness woven into our culture’s worst fears. For us ‘mental illness’ is not a somewhat vague technical term – it is burdened and tainted by movies and scary stories. The reality is deeply different.

Does it matter?

I want to suppose there is a valid thing called ‘mental illness’. I don’t know whether this is true, but I am not committed to saying it’s not. It’s at most a philosophical question. If you believe the mind = brain proposition you will have a philosophical position that differs from those who do not. Let’s allow it is a reasonable position to hold.

There is a considerable difference between a ‘mental illness’ and emotional responses triggered and shaped by trauma and stress. The latter is commonplace. 

Here are two dot points from https://www.aihw.gov.au/mental-health/overview/mental-illness

• Over 2 in 5 (44%, or 8.6 million) Australians aged 16–85 are estimated to have experienced a mental disorder at some time in their life, with 1 in 5 (21%, or 4.2 million) having experienced a mental disorder in the previous 12 months.
• Anxiety disorders (such as Social Phobia) are the most common type of disorder, affecting 1 in 6 (17%, or 3.3 million) Australians, followed by Affective disorders (such as Depressive Episode) (8%), and Substance Use disorders (such as Alcohol Dependence) (3.%).

There is an obvious association of ‘mental’ disorders with what seem to me to be essentially emotional responses to life experiences – maybe precipitated by stress or trauma. Substitute ‘emotional’ for ‘mental’ in the above and see how it sits with you.

How we interpret this data matters precisely because we all experience stress, and many experience trauma to varying degrees of intensity. In recent times what is called Complex Post Traumatic Stress Disorder [C-PTSD] has been recognised as something that can be experienced over the long term as the result of abuse [emotional, physical, or sexual] in childhood, or domestic violence. In other words, from ordinary life experience to many.

I don’t want to pathologize our normality, I merely want to make the point many readers will instantly recognise – a lot of bad behaviour by people who have admitted no formal diagnosis may be the result of C-PTSD and just accepted as ‘normal’ because that’s our experience of the world. I think back to that music teacher and wonder why she thought screaming “Sing!” at a child was okay. Why the intimidating powerplay to bully an 11-year-old into doing what she wanted? Why wasn’t she cool and take my disinterest in her stride. Why did she care so much?

I can tell you my side – why I stood up to her. My father was a bully, and violent at times. I stood up to him to survive. My default with the music teacher was to resist. Maybe I should have acquiesced, auditioned and just either sung badly or just not turned up. That would have been better for me, maybe. But I was on survival autopilot. What was her excuse?

We are all in this together

We all have unhealed wounds and sometimes they overwhelm us. If we understand that beyond the awful label of ‘mental illness’ there are people just like us whose ability to manage reactions sometimes needs the help of medication or therapy, we might be more considerate and compassionate – but then we’d need to look at ourselves with kinder eyes – and that isn’t easy to do with deep honesty.

The label of ‘mental illness’ has been burdened with a stigma it does not deserve. Yes, there are extreme manifestations of profound psychological dysfunction that, I grant you, are confronting to engage with – but they are rare, and it is unlikely you’ll ever come across them in a workplace.

To be blunt, the worst accounts of disordered conduct often concern those who declare no diagnosis and are frequently managers. Now, I am not suggesting for a moment that they deserve sanctions. I am merely making the point that from the perspective of staff the most problematic conduct is exhibited by managers who are not only not challenged by their managers but who are the most discriminatory in relation to staff who disclose they have been diagnosed with a ‘mental illness.’

A former colleague told me of a manager who routinely screamed at, and verbally abused, staff. Yet their conduct, of which senior managers were aware, remained unchecked. You’d want to guess there’s an undiagnosed, or unadmitted condition here. Maybe the manager feared that ‘disclosure’, despite the evidence, may have triggered an undesired response.

It is astonishing how often people with a diagnosed condition are discriminated against despite no untoward behaviour or disordered thought when they ‘disclose’ their condition. And yet people whose conduct is erratic or abusive are left alone. Something does seem to happen when there is ‘disclosure’ – the stigma is aroused, and harm is done.

Conclusion

Before I withdrew from fulltime employment, I set up a campaign to ‘Change the Conversation’ about ‘mental illness’. It gained a bit of traction, but it dissolved into the pool of normal. Some folk ‘got’ it but a lot more felt uncomfortable challenging the psychiatric orthodoxy.

The fact is that this is a philosophical question, not a science question. We all make metaphysical guesses about how we imagine reality works. Science does an impressive job on the detail- up to a point, but interpretation on the human level is still free territory. There is a difference between disagreeing and bullying – and there’s too much of the latter, swaddled in a generous covering of bluff.

When you find yourself saying a person is “suffering from mental health” it’s time to wonder what the hell you intended to mean. Clearly its not to suggest that person is ‘mentally ill’, because that’s easy to say. Obviously, something else is going on.

Ill or injured? A fellow traveller carrying a heavier burden of life experiences than many of us, or an alien in our midst? There should be nothing alienating about extreme expressions of the spectrum of being human. For some the injury of trauma is something they must live with and function well in the ‘normal’ world.

I hope this post inspires you to think more deeply about this taint of stigma we allow to be so cruelly imposed. There is, I think, no settled uniform popular position. This is an evolving field of thought and I encourage you to explore it. We must prefer the side of compassion and inclusion over distance and exclusion. The fear is unfounded. It stems from a lack of understanding, and maybe the want of an honest self-reflection on how wounded we are – and yet we behave as well as we can.

Below is a list of resources I have used in recent times. As always, I use Amazon links because of access to ebooks and audiobooks which are more accessible to many. If you are buying hardcopy do support your local bookstore.

The Body Keeps the Score – Bessel van der Kolk – This is a compelling exploration of trauma.

Desperate Remedies – Andrew Scull – This is a look at the history of psychiatry and the problematic place it is now in.

The Myth of Normal: Trauma, Illness & Healing in a Toxic Culture – 

Gabor Maté , Daniel Maté – The title says it all.

In the Realm of Hungry Ghosts: Close Encounters with Addiction – Gabor Maté – An exploration of what triggers addictive behaviours – trauma mostly.

Introduction

I have had a heap of legislation and policy documents to read recently, and I was suffering. Then I had a sudden flash of belated enlightenment – use the text to voice function. I did and it was transformative. 

The benefits

Spending hours in front of a screen is necessary when I am doing research, but it does me in. GBS has left me in need of literally putting my feet up several times a day. My poor grip means that hard copy is a hassle, so electronic softcopy is the only option, and reading posture is different.

With text to voice I can put my feet up and keep reading.

Legislation and policy documents are not a literary genre known to keep you on the edge of your seat – unless you are comatose and about to slip inelegantly onto the floor. With text to voice you can read along with the voice. This improves focus during those difficult bits [often the whole document] and so aids retention of content.

Even at its least effective you get a really decent sense of the document while eyeballing the ceiling. I take notes on my iPhone for follow up – phrases to search rather than my own notes.

The result is that I am able to go through a lot of information quickly, use search phrases to tag follow up, and maintain my focus while resting when I need to. 

How to make it happen

I use Mac, so PDFs are read in Preview. Finding text to voice is straight-forward – select text, hit Edit, go to Speech. Also see https://support.readdle.com/pdfexpert/en_US/reading-pdfs/read-pdf-text-out-loud

For Windows systems see https://www.thewindowsclub.com/best-free-pdf-voice-readers-for-windows-10

Listening methods

I have moved away from in ear and over ear headsets because they are either fiddly, lose power or are invasive.

I have gone to bone induction. A blind friend put on to Aftershokz’s Open Com – see https://shokz.com.au/products/opencomm

I put my set on at 8.30 this morning and its now 18:37, and after a full day of switching between podcasts, phone calls, a Teams meeting and listening to documents the Aftershokz are at 60% battery life.

Best of all there’s nothing in or over my ears.  They stay in place all day without hassles and with no risk of falling off. Having something in or over my ears most of the day can disorientate me, and this can, strangely, adversely impact my sense of balance. Because the bone conduction headset doesn’t impede my hearing, I don’t have the same feeling. The sound producers sit in front of my ears.

Conclusion

Being able to listen to documents has been a huge advantage, allowing me to rest while working and focus with greater clarity when I need to.

I mention the bone conduction headset because, as I walk with Canadian crutches, I can’t respond to a phone call without finding some place to sit or lean unless I have a headset in or over my ear. But walking with anything in or over my ear impedes my hearing to some degree, and there’s a safety issue there. I can’t move fast to get out of the way of a danger, so reducing my hearing is not a great thing to do. I need to be as alert as I can.

Introduction

I am not a fan of the tropics. I’d rather go to Antarctica than Bali, though I suspect accessibility might be an issue there – do Canadian crutches [despite their name] and ice go together?

A few weeks ago I received an email from Bali – from Linda – a friend and associate I thought I had lost contact with. I had left a message on her Facebook page so long ago that I had forgotten. She likes Facebook as much as me, so years later she gets around to updating – and sends me an email.

Some background 

We worked together back in the late 1990s up in the Northern Rivers region of New South Wales writing grant applications and delivering government funded projects when we were successful – which was often. We were a pretty good team and kicked some major goals. Linda’s career morphed into working on international aid projects, and I moved south to Katoomba to join NSW Department of Ageing Disability and Home Care. On one of Linda’s aid projects she contracted Haemorrhagic Dengue Fever in Vietnam around the time I got GBS in Katoomba. She was left with a debilitating poly-arthritic disease that created mobility issues as a complication of her Dengue Fever. Linda went to India in search of a cure and found it. It’s a wild story, worthy of a book or movie. 

She lives in India most of her time these days, but still travels doing humanitarian work. She returns to Australia regularly to visit family.

Disability support in Bali

For the past 12 years, Linda has been supporting a non-for-profit organisation in Bali called Yayasan Penduli Kemanusiaan (YPK) Bali, founded in 2001. Linda tells me a rough translation of the name is ‘humanitarian care foundation’. Bali doesn’t have a National Disability Insurance Scheme [NDIS] or even strong legislation to support people with a disability, so people living with a disability rely on…well YPK Bali and similar organisations. That’s it. To date, YPK has helped 5,234 people with physical disabilities, and has conducted 59,950 hearing checks. The organisation survives on volunteers, and grants in an increasingly constrained pool of opportunities. It does astonishingly well with what it can pull in, but it’s a constant struggle, and it shouldn’t be.

Bali’s population is around 4.36 million. In Australia the prevalence of disability in the community has been estimated at 1 in 6 or 1 in 5. I don’t know what would be a fair figure for Bali, but for the sake of this argument I will propose 1 in 10 to make my point. That’s 436,000 people – not all of whom will require support or services. Let’s say only 25% do – that’s 109,000 people, but if the number is only 10% that’s still 43,600 people. YPK is one of only a handful of services supporting people with disability. 

YPK was set up by Purnawan Budisetia, who is regarded as the father and leader of the organisation. He sadly died September 2022, leaving a gulf in skills in international networking and fundraising. Linda is the senior consultant, working pro bono for YPK. She is the only westerner, and the only one who can write grant applications and provide marketing strategies for YPK to help it continue to raise the funds that it needs to continue its work. The difference between Balinese culture and the European culture [the source of grants] is significant and this makes grant application writing a major challenge.

What YPK Bali achieves on what, for most of us the smell of an oily rag, is remarkable. For younger readers that image may be unfamiliar, but it’s the difference between a can of petrol and just the fumes. YPK Bali operates on the equivalent of less than USD$186,000 [AUD$282,000] a year. With modest resource it employs 23 staff, and provides equipment and services for rehabilitation, education programs, a mobile rehab clinic to villages, hearing testing for ALL children, and transport for clients to the YPK centre. That’s stretching limited resources impressively.

Why supporting YPK is a smart thing

You may wonder why I would think supporting a disability org in Bali is a good idea when I have been banging on about the lack of movement at home in Australia. Don’t get me wrong. I think supporting YPK has self-evident merit, but it can be a win-win as well. Sometimes taking attention away from ourselves helps our cause.

The contrast between Bali and Australia is telling in several important ways. The currency conversion is, at the moment, AUD$1.00 to 10,241.00 Indonesian Rupiah. When you can divide a dollar into more than 10,000 parts that suggests you can ‘get a lot of Balinese bang for your Aussie buck’. YPK’s annual budget of around USD$186,000 [AUD$282,000] is next to nothing in our terms. That’s around 10 NDIS clients [give or take]. YPK had 222 active clients in February. That’s as well as an education centre [120 kids in February 2023] and a mobile outreach [106 clients in February 2023]. 

Indonesia has a population of 275.40 million [2022] and a GDP of USD $1.186T. In contrast the GDP of Australia is USD $1.553T, with a population of 25,978,935 in 2022. Even so, we can scarcely afford our NDIS – and our aged care system is seriously underfunded. The prospect of people with disability in Bali being supported by domestic funding is a long way off. This is no criticism of the Indonesian government, just a reflection of the realities of demands on the public purse. It’s tough competition for funding in an increasingly constrained international funding environment. Linda assists YPK by chasing international grants of  around USD$30,000 [AUD$45,000] to survive. That’s an exhausting pressure on an organisation that isn’t culturally attuned to seeking funding on European terms.

There is the constant risk of failing to attract sufficient funds.  In the aftermath of the global paralysis caused by the pandemic, donors have signalled funding reductions around the world.

Disability solidarity 

Climate aside, visiting Bali would be problematic for me because I would have concerns about accessibility. But I could not, in all conscience, expect publicly funded enhancements to the public space – as I do here. Even what I enjoy here in terms of accessibility isn’t ideal. But it is a huge improvement on how things used to be, and I am grateful.

A google search tells me that Accessible Indonesia is a member of the European Network for Accessible Tourism [ENAT], so perhaps I shouldn’t be so concerned. Still, there’s the climate thing for me.

As I became aware of how things are in Bali, I became acutely conscious of how immensely fortunate I am. Yes, in terms of our expectations, I am doing the right thing in pressing the issue of disability inclusion. But it also seems so much like a ‘first world problem’ in comparison. I can do both – continue to agitate for positive change and support YPK. These days I am on such a limited income I was thinking about having a donate button on my blog. Somehow that now seems self-indulgent. I can afford $10 a month.

Bali has been called ‘Australia’s playground’. It’s only been fairly recently that we have been committed to ensuring our own playgrounds are inclusive. I am a member of my local council’s Accessibility Advisory Committee and I have been deeply impressed by the commitment to ensuring that playgrounds are

inclusive. Great journeys begin with small steps – we must support disability inclusion for people with disability in Bali before we can expect an assurance of accessibility when we visit.

How to help?

There are presently three important ways to help YPK.

1. Assistance with fund raising is vital. Ideas for and help in executing fundraising activities are always welcomed.  
2. Skilled grant application writers for international tenders are immensely valuable. It’s better to have a team than a solitary hero.
3. Financial support is foundational. The disparity in currency values means that a little in our terms can have a lot of impact in Bali. There are donation buttons on the website ypkbali.org. The website needs updating to better accommodate potential international buyers of products in their online store. That’s being addressed. 

There is a range of things we can do.

• Disability activists can widen their vision from their own imperatives to include a wider perspective on how they can help.
• Disability ERGs can add support for the YPK to their own philanthropic vision.
• Individuals who are people with disability or allies can set up periodic contributions and/or preferentially purchase from the website [when updated]
• Those skilled in grants writing can offer their services pro bono.
• Down the track I can imagine setting up an online community that can actively develop other ways of helping.

Conclusion

Linda has always challenged my thinking, and I have always been grateful, well mostly. It had been around 22 years since we last spoke, and it felt like it was just yesterday. Some readers will understand this sensation.

My focus on disability has been laser focused on my experience and context. That’s perfectly fine. But now that focus has been disrupted and suddenly there’s a far greater dimension to my appreciation of disability. Seeing a kid in a wheelchair in an environment that will not be friendly to wheelchairs causes me to pause. How tough do they have it?

My immediate response was to write something reflecting my reactions to what I have learned. My second was to set up a AUD$10 a month payment to YPK.

A final thought. AUD$282,000 is only 2,350 people donating $10 a month. That’s not much, is it?

You can contact Linda via her email [email protected] or WhatsApp +61 419 427 274

Please introduce yourself – say as much as you feel comfortable saying about who you are, what your disability is [and whether it is acquired – and at what stage of life]

My name is Sommer, I am a 42-year-old, first time mum to a baby girl named Hayze. I live with a disease of the central nervous system called Multiple Sclerosis (MS) and also have a diagnosis of psoriatic arthritis. 

I was first diagnosed with MS in 2015, following years of unusual debilitating symptoms and doctors’ visits that told me there was nothing wrong. Eventually, over a period of a few days in hospital, I became progressively paralysed down the right side of my body and diagnosed with MS. 

Since 2015, I have fought the ups and downs of MS and its continual relapses, while navigating my way through government bureaucracy to maintain my full-time employment.

My career as a Social Worker/Clinical counsellor has seen my predominantly work with children and families. Then in more recent years I have engaged in social justice work for people with disabilities.

I am currently on maternity leave and enjoying my newborn baby whilst balancing life and MS.

Talk about your experience of disability as a daily experience – how you feel 

I am essentially diagnosed with relapse remitting MS. Which is a term that quite often bugs me. Many people presume that relapsing MS means periods on symptoms and periods without symptoms. Unfortunately, I suffer from daily MS Symptoms that range from numbness, tingling, weakness, heat intolerance, migraines, bladder, and balance issues, (I could go on and on).

Navigating MS has been a journey of its own. I have now had multiple immunotherapy’s that leave me more susceptible to other illnesses and diseases. I have had to be significantly mindful of the risk of covid-19 for example (more so than the average person).

I have significant issues with maintaining my home, personal care and being able to continue to work full-time. But I’m also not in a position where I can just stop working. So, I find myself to be constantly battling to stay ahead or dreaming I would win lotto.

List up to 6 things arising from living with your disability that are a pain in the butt to you 

#1- My right hand – only works sometimes. If I am tired, too hot, or just not having a good day my right hand simply doesn’t function. This can mean that I can’t write/type or even sign my name. I can have a massive tremor that results in spilling drinks and food (usually all over myself).

#2 – Travelling – Travelling used to be the activity that I loved the most. Nowdays, I have to plan weeks in advance and then I’m usually so frustrated at the availability of accessible accommodation and activities that I get fed up and cancel my plans. Hotels do not cater for my needs, airports/planes and transfers are a nightmare and now to add to the difficulty I have a baby requiring a pram and a million other difficult to transport items. 

#3 – Baby Items – I have just discovered a whole new world of items that are not accessible to parents with disabilities. I literally need someone to help put my baby’s pram up and down, I need help with her capsule as it’s that difficult to get out of the car. Product packaging may be child proof, but it is also that not accessible for a person like me with a disability.

#4 -Having to explain myself over and over and over again. I recently took a secondment role where I clearly noted (time and time again) that I could only work from home due to the distance/location of the role, my MS and affiliated complications. I gained the role and then spent the next 12 months continually rejecting the request to come into the office and continually explain that I would not be able to travel due to my health.

#5 – People comparing their experiences of fatigue to my MS fatigue. Not the same thing! Full stop. Don’t argue with me! The number of times people have commented that they are tired and understand my fatigue and compare their own fatigue to mine. The most frustrating and insulting conversation.

#6 – Dealing with the NDIS. The most inequitable yearly experience I have to endure. 

Is there an upside to living with your disability? Feel okay about saying no.

No.

What one thing would you like the reader to understand about living with a disability

That having a disability is hell. If you or your support system are not able to communicate your needs and be heard – you will be 1000% lost in the system.

Introduction

Yesterday [March 3] I was catching up on Late Night Live with Phillip Adams, an ABC Radio National show I have been following for the last 30+ years. In all that time I had never heard a conversation about Multiple Sclerosis [MS] in any public forum, or about disability for that matter.

The reason I was hearing a conversation now was clear. Phillip’s guest was Robert Douglas-Fairhurst, a Fellow and Tutor in English at Magdalen College, Oxford. Robert had written a book – Metamorphosis: A Life in Pieces. A quick hunt on Amazon told me he’s a prolific author of books on English literature. 

Metamorphosis: A Life in Pieces is a reflection on Robert’s experience of being diagnosed, and living, with MS.

I bought the audiobook and got into it straight away. This isn’t a review of the book. I want to explore why this kind of writing has the exposure it has, compared with other stories about disability.

You can listen to Phillip’s chat with Robert on the ABC website if you don’t have the Late Night Live podcast on your phone [I have the separate stories rather than the full show option].

A worthy tale well told

MS is one of a number of autoimmune diseases. As Robert observes, becoming aware that your body has turned on itself is quite an experience. It’s a slow reveal in a macabrely tantalising kind of way. It is a seriously scary experience.

I have little understanding of MS, although I spent quite a bit of time supporting a former colleague to obtain critical workplace adjustments. Some years before that, I was contacted out of the blue by a workmate who had suddenly disappeared. She told me she had MS and, as her condition deteriorated, her treatment in the workplace distressed her.  She finally went on extended leave in despair. She contacted me because I was the only person who treated her well. She was resigning and wanted to let me know she appreciated my support. I didn’t know she had MS. I was supportive because it was evident something was going on and she was trying to handle it.  She told me she wouldn’t be able to return to work as her conditioned had continued to deteriorate.

This was before I contracted Guillain-Barré syndrome (GBS), and I felt frustrated there was nothing I could do to help. I didn’t know anything about MS. We agreed to stay in touch, but that was the last time we spoke.

Acquiring a disability through a traumatic event [physical or psychological] or via the slower process of disease is a profound business that people cope with in differing ways. Suddenly one’s normal is shattered and a new normal is constructed over time. Often, we are left to sort out our responses unaided, and we fall back on what we have.

Robert is a Professor of English Literature and an accomplished author, so he wrote a book with a lot of connection to literature. An author of his reputation and standing will attract the interest of some shows and not others.

Metamorphosis isn’t just a book about getting MS, but what happens when a Professor of English Literature gets MS. For me it is a deeply fascinating story very well told. Others may prefer stories of acquiring and living with a disability as told by sports people, members of the armed services, victims of motor vehicle accidents and others. These are often public disability heroes. Their stories are told well enough, but without the erudite flourish Robert subtly wields. So much depends on what floats our boats.

A sense of connection

Guillain-Barré syndrome (GBS) is one of the autoimmune diseases and like MS it comes in multiple expressions. In both, the nervous system is attacked by the immune system and muscle weakness and paralysis may be the result. For some the onset of an autoimmune disease is slow, for others it is sudden, as it was for me. Robert describes the relatively sedate process of being aware something was up and of getting a diagnosis. For me, one moment I was crook with something like a bad cold and the next thing I know I am lying on the loungeroom floor as paralysis set in.

Robert reflects on literary associations as he goes through the steps of being diagnosed, and later, as he becomes aware this thing isn’t going away.

My response, when I finally recovered the ability to make coherent movements was to write and to read – but non-fiction rather than literature. In 2008, when I acquired GBS I was struggling through a Masters Honours thesis. When I recovered my writing ability in mid 2009, I completed my thesis as well as sending out email blogs to family and friends, keeping them up to date on my progress.

So, for me, coming across a book that is a personal account of living with MS was as close to engaging with the voice of a person who had a similar kind of experience as was I likely to find. Here I am not saying there is a parallel between the experience of living with MS and GBS. The sense of similarity is in the existential drama of becoming aware that one’s normal has been devastated and a new one is being formed by terrible and confronting degrees. 

The process of psychological adjustment is probably universal for any person who experiences the acquisition of a catastrophic disability, but the details will be different. There is a difference between being suddenly and catastrophically hit and then recovering somewhat over time, and progressively becoming aware that mounting instances of bodily malfunction are signs of something not at all good and this is permanent.

We shared an aching uncertainty about how things might pan out. For me it was wondering to what degree I might recover, and for Robert it was wondering how bad things were going to get.

What Robert does is disclose his inner processes in an authentic and articulate way. He has the resources to flesh them out in a literary context which gives them a depth and beauty rarely found.

An articulate expression of the inner life is a rare thing

Talking about the experience of acquiring and living with a catastrophic disability is hard if all one has is the stark utility of plain language. For that to be workable there must be trust and comfort – a bold capacity to dare assume intimacy. This is something that great fiction writers achieve with their ability to clothe language in evocative beauty without obscuring the utility.

The rest of us struggle to do this, even with those close to us. For most of us telling our stories to others isn’t something that comes naturally. There’s a performative element that we must learn – and an authenticity we must develop and preserve.

Metamorphosis: A Life in Pieces tells the personal story of transformation into a radically different normal with the instruments of literature. It’s a rare privilege to be invited into a world that is not fictional – and it’s an enriching and beautiful place to visit.

There are some aching frank descriptions of living with a disability. Carly Findlay’s Say Hello stands out for me. Carly lives with a severe skin condition called Ichthyosis which leads “to dry, itchy skin that appears scaly, rough, and red.” I found her book a challenging and disturbing read because of the cruelty she was subjected to.

Robert brings an erudite ‘spoonful of sugar’ to help his truth medicine go down. Maybe that’s what got him on a show like Late Night Live. I am grateful for this. Its less a case of a book about MS and more about the storyteller. That can backfire when the storyteller is a disability hero whose main claim to fame is that their disability now defines who they are as a public presence.

Robert’s primary role is as an academic who happens also to have MS. He has taken a catastrophic life experience and looked at it through a sophisticated lens. Its not better than the raw accounts, just rare in comparison. It also means that the subject of MS will reach a far wider audience.

Conclusion

When we dare, we tell our stories as best we can. But story telling is a skill that few master. What is intended as a recitation of fact can be interpreted as a complaint that implicates the listener/reader. Empathy is a desired state but in achieving it takes skill to avoid precipitating sympathy, which can be reactive and ephemeral. Empathy demands inner change in the listener/reader. Sympathy doesn’t. It requires only a performance which has no enduring consequence.

Other than silence there are two options. The first is to process one’s existential trauma first, but this is fiendishly difficult and often results only in the creation of a heroic mask of performative mastery. The second is to craft the trauma into a narrative with authentic sensitivity and skill.

I think we are mostly trapped in option 1. This means that our best attempts may be good enough to serve our purposes, but our worst attempts create and champion heroes whose existential wounds are not only unhealed, they keep the hero locked in an emotional anteroom where they receive their audience. The authentic is left waiting and wanting.

Robert has treated us to an example of option 2. His reputation as an expert on story telling makes talking about his book in polite educated company a good thing to do. Its not often that this happens. I am a dedicated consumer of sophisticated discussions, and outside specific topic podcasts, I have not encountered a general content show talking about living with disability in any context or depth.

This is such a rare experience. Please do take the opportunity to read/listen to the book. Not only do you get an open discussion of the personal experience of living with MS, but you also learn about the disease itself, and its presence in literature.

As always, I have hyperlinks to Amazon because readers may need to access ebook or audiobook versions. Please support your local independent bookshop whenever you can.

Introduction

My name is Pam, and I am 67 years old and have lived with a disability for most of my life. I became disabled at 17 years of age after having bone cancer in the leg. My leg was amputated from the hip. 

Looking at someone with a body part missing may be confronting for many people. I can understand why “I freak people out”.

Life with a disability- the early years

 It was difficult for me being a young female and living in an age where physical beauty was almost worshiped. This was a common mindset in the 1970’s.

I was embarrassed by my disability and was often made to feel humiliated by misogynistic males.

When I appeared in public for the first time after losing my leg it was a shock for me. I could no longer be in a public place without people staring at me.  Over the years children have regularly come up to me and asked where my other leg was.  

People would constantly tell me that they felt sorry for me or tell me how brave I am. Over the years many strangers have asked, “What happened to you?” They never seemed to think that their questions were offensive or intrusive. It’s like that they had the right to ask. I don’t blame kids for their actions, but adults should know better.

I learnt to walk on an artificial leg even though it could be extremely painful. Because my amputation was so high it meant that I had to wear a huge brace around my hips. At times my skin would blister, and the pain was intense, especially in hot weather.

For many years I was afraid to be seen without my artificial leg because of the way people reacted to me.  I never went swimming and I love swimming. I remember a time when my foot broke and fell off and there were times when my leg would break and I could not walk. This could happen at any time and made life challenging. 

Also, my artificial foot would also get under the brake when I was driving. That was a big problem.

I wore an artificial leg for many years and put up with the pain. Then one hot day I stopped wearing it and went for a swim. I swam in a dress because I can’t wear a swimming costume. People stared at me but somehow, I did not care. I was not able to get a job after that; nobody would employ me with one leg.

Life with a disability, the present

Generally, life is good; I work part time and I swim and paint. I have not worn an artificial leg for many years. While it was good to have my hands free to carry things wearing an artificial leg was not worth the pain. 

Now I walk with crutches and can move about freely. I think if my amputation would have been lower it would have been more comfortable to wear an artificial leg. 

I no longer have issues with body image or low self-esteem, and I don’t care what people think about my disability as it’s not their business. I believe in myself and always try to do my best. 

Things about a disability that are a pain in the butt

1. I regularly fall over and at times I have hurt myself. I have to be extra careful in the rain. My balance is getting worse as I get older.
2. Trying to access disability parking or accessible toilets when they have been taken by able bodied people. 
3. Inaccessible public places and councils that mouth off about doing good things for disabled people but do nothing.
4. High levels of unconscious bias from management at work.
5. What I call “the disability dichotomy” telling you that you can’t do things because of your disability and then saying you don’t need accessible parking. “No special treatment for you.”  It’s just not, and never has been, a level playing field.  I was once told by a Manager of a disability service that I was not disabled enough to understand disabilities. She was not disabled.
6. Lack of supports and finances for people with a disability to achieve and be the best they can.

 Is there an upside to having a disability?

I don’t think that there is anything positive about having a disability and if I could change and not be disabled I would “in a heartbeat.”

I belong to one of the most powerless groups of people in our society and it’s always a fight for your rights. 

I am just glad that I am able to work and not spend my days waiting for pension day. I did live like that for many years.  I was lucky enough to put myself through TAFE and university.

So many people with disabilities are living in poverty with no hope of social mobility. 

What one thing would you like the reader to understand about living with a disability? 

I think it’s important to do your best at all times. We have one life to live and if you have to live with a disability, that’s a pain in the butt, but life is worth living. Hold your head high and believe in yourself and don’t let anyone bring you down. You may not always win but at least you tried.

Introduction

The Guardian published an article this morning [24 Feb 23] on the NSW ALP’s commitment to increase the number of people with disability employed in the NSW Public Sector – if it wins the upcoming election in March.

It has committed to the same modest target the current government set and failed to hit. That’s 5.6% compared to the UK’s 10%.

There are a few things to like about the vision, but there’s a lot to cause concern that the intent may be thwarted by the same lack of focus on the primary cause of failure that the present government didn’t wake up to.

The Guardian’s article isn’t anything more than the promotional stuff you’d expect during a campaign, but for me the warning signs are there. On a personal level I do not doubt the ALP’s intent.

Recruitment isn’t the whole problem

The article says that the ALP will team up with Daryl Alcott and his Get Skilled Access business. Doing so could have significant advantages at the recruitment phase. There are advantages to having a specialist disability recruitment service that may, if things are established well, overcome the biases, and poor interview set ups that can otherwise bedevil applicants with disability.

But this must be thought through properly, and not be seen as a ‘magic’ solution. Public sector recruitment is a complex matter, and so long as Alcott’s business is able to stick to its area of expertise, any partnership could deliver good results. There’s a risk it may be innocently biting off more than it can chew, or digest.

There are wider critical concerns that must be addressed before a specialised recruitment process can have an enduring impact:

• Intentional, strategic, and accountable efforts to increase the percentage of people with disability – the major problem.
• Job design – the presence of roles that accommodate the range of abilities exhibited by people with disability – a large and complex issue.
• The elimination of abusive and discriminatory conduct – a significant and critical challenge.

I explore them below.

Intentional, strategic, and accountable efforts to increase the percentage of people with disability.

There is a very simple reason why efforts to meet the targets set in the current government’s Premier’s Priorities haven’t delivered. There really wasn’t a managed effort at all. 

The recently released NSW Public Service Commission’s Annual Report 2021-22 notes on page 6 that, “Employing and supporting people with disability remains a challenge for our sector and we continue to support agencies to meet the Premier’s Priority target of 5.6% of employees with disability.” The figure jumped from 2.4% to 2.5%. Yes, anything remains a challenge if you do nothing. You do have to ask whether the function of the PSC is to make excuses for the sector’s inaction. 

The Age of Inclusion campaign developed by the PSC was ill-conceived and mis-guided. It was so flawed it wasn’t used as a significant resource by any agency I am aware of. It took me more than 18 months to have highly offensive and stereotypical misrepresentations of people with disability removed from the webpage.

At the announcement of the Premier’s Priority the focus was immediately on recruitment in a well-intentioned but random manner. The larger task of setting targets and making hitting them part of an accountable plan was ignored, as was the relatively simpler task of counting the number of current staff with disability.

There’s a mismatch between internal diversity reports and the data generated by the annual People Matter Employee Survey [PMES]. The PMES count of staff with disability is higher [in 2022 it was 6% across the sector] than the diversity data of most individual agencies [2.5% for the sector in 2021/22]. There is no denying that things are improving, but that improvement conceals a multitude of ills.

Of the 94 NSW government agencies, in 2022, 19 had over 6%, 8 had 6% and 33 under 6%. 34 had staff numbers too low to report without violating privacy provisions.

Only 4 departments had over 6% – Communities and Justice at 8%, Planning & Environment, Regional NSW, and Customer Service at 7%. Of the remaining 15 agencies 11 had staffing levels of under 1,000 and they had rates between 7% and 12%. Of the 8 agencies scoring 9% or better, 2 had staffing between 1,000 and 1,500, and only one [TAFE NSW – 9%] had substantial workforce of 15,000+. It does seem smaller agencies are better able to build trust.

The spread of results raises the question as to whether each agency should be able to show internal diversity figures of at least 5.6% as opposed to a consolidated sector-wide figure. There are some complexities here. The nature of some agencies’ main roles might be an argument against a high level of staff with disability. Whether those arguments would be validated under scrutiny is another matter.

The reasons for the mismatch between internal and PMES data vary from mistrust or misunderstanding of the employer’s motives for wanting the data, fear that disclosure of a disability may not remain confidential and may result in discrimination, and a lack of clarity on what constitutes a disability. The mismatch reflects a very real cultural problem that is underpinned by genuine hazards.

The definition of a disability used in workforce analysis must match that used in population studies. A person may have a disability by a definition that has no material impact on their ability to obtain, perform in, or retain employment. There is, as yet no clarity on whether a disability is a condition which requires adjustment or accommodation at work – always or sometimes. Its hard to hit a target that is just an abstracted number, and you have no clear idea what it means in concrete terms. There’s also a difference between going for a target that is just a number as part of a compliance requirement and a target that is about real people.

The reason all this remains unclear is that there was no overall strategic approach developed, and no measurable and accountable goals set. Staff with disability were consulted only on the recruitment focus. To the extent that there was any wider sector scale thinking staff with disability were not involved. It wasn’t that there was no thinking being undertaken by staff with disability – there was, but there was no engagement. The failed Age of Inclusion campaign was a telling illustration of what happens when there is inadequate engagement with people with disability.

An effective response to the challenge of meeting any target must be driven by stakeholders with skin in the game. That means going beyond mere tokenism that includes too few people with disability, not giving stakeholders power of influence [they are junior staff who can be overridden or ignored] and selecting ‘decorative’ representatives who live with disability but who lack the knowledge, insight and skill to delivery high quality work.

The dream of building a ‘world-class’ public service is a good one, but on evidence one or more of the following must be true – it’s a low bar; it’s a nice idea to say, but nobody really thinks it’s a good idea to do; the task is neither understood nor sensibly estimated.

The notion that any worthwhile objective can be attained without insight, skill, knowledge, resources, or accountability should make the reader wince. But that’s been the situation since the Premier’s Priority target for employing people with disability was announced.

Job design – the presence of roles that accommodate the range of abilities exhibited by people with disability.

Public sectors have been reducing the scope of roles that once provided opportunities for people with cognitive and motor impairments, and other types of disability. In part this is due to the evolution of technologies and methods. For example, the move to electronic document management has eliminated paper files, and the need to store and retrieve them. Doing so was once a role that could be performed by a person not suited for other administrative roles.

The other important concern here is that public sectors have high demands and limited resources, so workforce design is a critical concern. A preference for higher efficiency is understandable. However, humans are not machines and a focus on efficiency over participation reduces the idea of employment to a ‘cog in the machine’ sense rather than one of equity.

The idea that a public sector should reflect the community it serves tends to resolve around the notion of type – diversity of gender, race, sexuality, culture, and disability. However, disability differs from the other ‘types’ in that it relates to capacity in a way the other ‘types’ do not. The risk is, therefore, that disability is included so long as it is not, in a sense, a ‘real’ disability related to capacity to perform. For example, a wheelchair user has different inclusion needs from a person on the autism spectrum. Access is not principally a physical concern, but we do not encounter much discussion on how a person with a cognitive or behavioural disability can have equal access to a workplace.

The efficiency argument also breaks down when we consider that it is applied in a haphazard and selective manner to ‘normal’ people. The most telling evidence for this is NSW’s PMES. A sample from the 2022 PMES data consolidated for the sector as a whole will illustrate this. The PMES reports against 5 Key Topic Areas [KTAs] with 24 specific topics rating the level of satisfaction. Only 3 specific topics [in 2 KTAs] scored 70% or higher. Only 50% of the specific topics scored over a 60% satisfaction rating. 

What constitutes a “pass mark” for a professional workforce paid from the public purse is not anywhere articulated, but it isn’t hard to believe that it should be a high bar – at least 75%?. I have appended the full table at the end of the essay. 

The point I want to make here is the NSW Public Sector isn’t exactly a paragon of efficiency. It is a human organisation, expressing all its diversity and imperfections. The argument that there is no room for less ‘efficient’ people is a rational conceit – a form of discrimination, perhaps an unconscious bias defended by self-serving but poor rationales. It is a position that is amenable to rethinking, revising, and being made more inclusive.

In 2017, Ebru Sumaktas, a blind woman and a former NSW public servant, prepared a report on her Churchill Trust Fellowship research project – Successful and Sustainable Disability Employment Programs in the Open Labour Market. The report includes exploration of roles that could be created in the NSW Public Sector workforce. You can find it online. The report has been ignored by the sector, despite there being more than ample opportunity to read it and benefit from engaging with Ebru in discussion.

The elimination of abusive and discriminatory conduct – a significant and critical challenge.

Staff with disability are disproportionately subjected to bullying and discrimination. I have written about this extensively in other blog essays, and I am not going to repeat myself here, beyond briefly reiterating some key points. This is the case in the NSW public sector, which has diverse workplaces, work conditions, and work cultures. There is no simple critique that can be applied, but some things are universal, because they are part of being human.

We discriminate against ‘others’ either reflexively or because we have become conditioned to do so. Sometimes this can be ‘baked’ into a work culture because of the nature of the work [like engaging with the rawer side of people in crisis, especially where hazards are involved]. Other times it’s a simple case of people being inept in, or unfit for, leadership roles.

Another critical problem is that leadership often must be impersonal, and this can lead to a lack of empathy. Dealing with bullying, exclusionary, or abusive conduct isn’t easy. It is demanding and taxing, and it can’t be reliably delegated. It also takes skills that are outside the standard leadership suite – something too few people in leadership roles are aware of or acknowledge.

The sector also relies on a quasi-legalistic and bureaucratic approach to complaint resolution that is generally performed in an inept way that is biased toward to an agency’s perceived interests and injurious to the complainant. The PMES data on grievance handling [53%] is indicative of a fundamental problem – especially when we understand that the question asked is a hypothetical – If I raised a grievance in my organisation, it would be handled in a fair and objective manner. The unfavourable response of 18% might tell us more if we knew what portion of people who actually lodged grievance this represents. 

The absence of an effective way of addressing concerns about discrimination means that there is no clear picture about actual levels of harm being caused. For many, trying to take action will only trigger a backlash that causes more harm. A former colleague had to resort to taking his agency to the Human Rights Commission to end persistent bullying. He won and received compensation for legal costs. But few have such fortitude. Those responsible were never held to account. The low level [53%] of approval in response to a hypothetical on grievance handling at least tells us the process has a very poor reputation. That would suggest it is discouraging. It also suggests that things are way worse than the PMES data can be made to say.

There are two concerns here – retention of staff with disability and the obligation to not cause harm.

Retention of staff with disability by making their work experience more accessible in terms of physical access, meeting other personal physical needs through providing ergonomic equipment, and addressing barriers to career progression is happening – to varying degrees across the sector. But the failure to address bullying and exclusion that leads to resignations, or intentional efforts to force resignation as a tactic to remove a staff member with disability still attracts little serious attention or action. The annual NSW State of the Sector report routinely expresses sentiment asserting ‘zero tolerance’ for bullying, followed up by an admonition that ‘we must do better’. Its difficult to understand what ‘zero tolerance’ means in the face of evidence of ‘ample tolerance’.

The obligation to do no harm is built into the sector’s code of conduct and WHS obligations, but instances of staff with disability experiencing physical and psychological harm persist. There is a belief that disability inclusion is separate and distinct from WHS obligations. It is difficult to understand this reluctance unless it is to minimise exposure to the need to respond to a real hazard by reclassifying it.

We have a certain appetite for causing harm. Its something we do in our privates lives towards those with we have intimate relationships – at least sometimes and unintentionally. We can and do look away when harm is being caused to others. We find ways of justifying our inaction. If we have the heightened risk of less empathy being expressed by leaders toward individual staff, it isn’t hard to see that it is possible for a colleague with disability to experience harm in our midst and for no action to be taken.

The problem here isn’t a moral one. It’s a problem of evolving organisational psychology. Being subject to abuse and discrimination in the workplace isn’t new. But as we seek to bring into the workplace more people with disability [and this goes for other diversity groups as well] we are bringing in more people potentially vulnerable to discrimination, exclusion, and harm.

There is a recognizable imperative for organisations to respond to this greater challenge by increasing efforts at addressing the challenges to assure safety and inclusion. And, critically, holding those who engage in intentional or persistent harm-causing conduct towards staff to account. We are inclusion-dependent creatures. Our instinct is to belong. Exclusion, isolation, or rejection causes real harm on a psychological level, and it can express physically as well.

The job of evolving our workplaces to meet a higher standard of inclusion is complex and demanding of critical resources [attention, time, effort – and hence funds]. This is not a case of scolding those who aren’t doing enough, rather arguing there must be an intentional planned, resourced, and accountable approach taken to maximising the chance of a person with disability remaining because they are safe and included, and leaving only because there is a better prospect.

Conclusion

There is a prospect, if there is a change of government, that a fresh approach may bring much needed changes. But the reality is that those who have failed to think through and act to address the failure to meet the current government’s Premier’s Priorities will still be in key roles in the sector. 

Anybody familiar with Yes Minister will instantly see the risks. Without a significant structural change that brings in stakeholders with lived experience and a genuine process of accountability its likely to be a perpetuation of the same sorry state, just rebranded, and with a fresh coat of paint.

The prominence given to Alcott’s involvement may make for interesting reading, but it smacks also of a deal cooked up by people who have no grasp of the challenge they imagine they are taking on. It could just be electioneering, but it has attracted a red flag here – a risk of a lost opportunity for vitally needed reform.

The reality is that some workplaces across the sector are toxic and have toxic or inept leadership. For a variety of reasons people with disability can be vulnerable to intentional and inadvertent harm that can endure, even despite efforts to put a stop to it. There is an ‘appetite for abuse’ despite the rhetoric to the contrary. Wanting to bring more potentially vulnerable people into such environments should be seen as reckless, but it isn’t. A focus on a number [5.6%] is an empathy-free gaze. A focus on the real inclusion and wellbeing of people with disability [or any other element of diversity] is an empathy-rich aspiration.

It is interesting what some folk think should be an attribute of a ‘world-class’ public service.

From the 2022 PMES Report -Sector-wide data

KEY TOPIC  AREA	SPECIFIC TOPIC	RANKING
Purpose and Direction	Risk and innovation	73%
Purpose and Direction	Job purpose and enrichment	70%
Outcomes	Customer service	70%
Purpose and Direction	Ethics and values	69%
Work Environment	Health and safety	69%
Work Environment	Inclusion and diversity	68%
Outcomes	Job satisfaction	68%
Purpose and Direction	Role clarity and support	64%
Leadership	Employee voice	64%
Outcomes	Employee engagement	64%
Work Environment	Flexible working	63%
Work Environment	Teamwork and collaboration	62%
Enabling Practices	Recognition	60%
Leadership	Decision-making and accountability	60%
Outcomes	Well being	58%
Enabling Practices	Learning and development	55%
Enabling Practices	Feedback and performance management	55%
Leadership	Communication and change management	55%
Work Environment	Grievance handling	53%
Leadership	Senior managers	51%
Enabling Practices	Recruitment	48%
Enabling Practices	Pay	48%
Leadership	Action on survey results	44%
Work Environment	Burnout [disagree]	34%