Category: Uncategorized

Introduction

A friend who has a degenerative spinal condition recently reminded me why we need to pause and pull back from our grappling with The Disability Inclusion Challenge as something out there, and fold back in a reflective fashion upon ourselves.

The song

He sent me an email out of the blue asking what song I’d choose as a kind of disability anthem. He had chosen “He Ain’t Heavy, He’s My Brother” and included this link https://www.youtube.com/watch?v=oT57tjz9py8 in the email without mentioning the title.

It was my choice too, as a reflex.

Wikipedia says He Ain’t Heavy, He’s My Brother “is a ballad written by Bobby Scott and Bob Russell. Originally recorded by Kelly Gordon in 1969, the song became a worldwide hit for the Hollies later that year and also a hit for Neil Diamond in 1970. It has been recorded by many artists in subsequent years. The Hollies’ version was re-released in 1988 and again was a major hit in the UK.”

The title has an interesting origin. This is from Wikipedia:

“James Wells, Moderator of the United Free Church of Scotland, tells the story of a little girl carrying a big baby boy in his 1884 book The Parables of Jesus. Seeing her struggling, someone asked if she wasn’t tired. With surprise she replied: “No, he’s not heavy; he’s my brother.” 

In a 1918 publication by Ralph Waldo Trine titled The Higher Powers of Mind and Spirit, Trine relates the following anecdote: “Do you know that incident in connection with the little Scottish girl? She was trudging along, carrying as best she could a boy younger, but it seemed almost as big as she herself, when one remarked to her how heavy he must be for her to carry, when instantly came the reply: ‘He’s na heavy. He’s mi brither.'” 

You can read the full story here: https://en.wikipedia.org/wiki/He_Ain%27t_Heavy,_He%27s_My_Brother

The flip

My friend then sent me a follow up email, saying, “I forgot to include my dual purpose interpretation – It also works for me on a spiritual level – my higher self and my conditional human.

But I’m strong
Strong enough to carry him
He ain’t heavy, he’s my brother

So on we go

His welfare is of my concern
No burden is he to bear
We’ll get there

For I know

He would not encumber me
He ain’t heavy, he’s my brother

It was a potent reminder how it is for people whose bodies can seem to be working against them – whether through a condition at birth, an accident, or an acquired illness later in life – and how differently they can respond. 

Living with the daily experience of disability varies in intensity. For some it’s a steady state of degrees of difficulty on a scale from okay to an incredible hassle. For others it’s a variable experience – physically and psychologically. There are days when its tempting to just put the burden down. But, as my friend reminds me, there’s a song for that. However, not everyone knows it, or can [or wants to] sing it.

Conclusion

The email reminded me how differently people with disability respond to their lived experience, and how, now and then, there is unexpected beauty in the description of that experience. 

It was a small thing, an email from few weeks ago that I read and appreciated in relative haste. But as I was pruning my inbox today I had time to pause and let its depth register with me as my mouse hovered over the delete option.

                  

Introduction

I was recently asked why I had an image of an autumn leaf on the blog landing page.        What had this melancholy thing got to do with disability? A lot, and it’s a bit of a story.

Escape

In February 2009 I finally convinced my captors I was fit for discharge from the rehab ward at the Katoomba hospital. I had been hassling them since November 2008. To be honest, they were right to resist, but I was going nuts and getting desperate. My psychological wellbeing was not something they cared about – or for.

I went home with an elbow walking frame. That’s a big unit to be moving around a cottage. I could get from my bedroom to the back verandah, the venue of daily exercises, with not too much difficulty. Out there I had space to do squats, step exercises and attempt walking. I was doing 5-6 hours a day, pushing myself to get competent enough to get back to work. It was still 6 months before that became a prospect.

I was offered ongoing rehab back at the rehab ward, but that, as it turned out, was only an offer to ‘supervise’ me. That hardly seemed a great deal. Why would I go to the hassle and expense of getting to the hospital and back by taxi for what – to be watched? Besides I could get neither out of, nor into, the house unaided for quite a few months. I had been doing an extra 2 hours a day in rehab for months. I had a decent understanding of what I needed to do to get walking again, and I felt no great need to be watched.

I had discovered the iPhone and podcasts. I knew I was at risk of just hunkering down and listening to podcasts, so I made a rule. I could listen to podcasts only so long as I was exercising. I exercised a lot.

The view

My exercises had me facing south. I had a support bar installed above the verandah railing for squats and steps. There is a Japanese Maple growing on the southeast corner of the verandah. It reached west and was the first thing I saw as I worked through the tedious process of squatting and stepping up and stepping down as I steadily increased my count. It was a slow, clumsy affair at first, a real struggle to stay balanced. The tree was close enough to touch if I stretched a bit. It kept my eyes company.

Because I was out there every day, I became acutely aware of even the most subtle seasonal changes in the garden and with that tree in particular. As the year transitioned from summer to autumn, I witnessed that change with a growing sense of intimacy and familiarity. The leaves change colour and fell. Eventually all that was left was a poignant scene of a leaf whose fall had been interrupted. It was there every day into winter – straight ahead as I performed my exercises.

A symbol

I was recovering my ability to hold and use an SLR. Being able to take photographs again was a massive relief to me. I still use the first photograph I took on a trip to an open garden in Mt Wilson as wallpaper on my phone. 

Being able to hold a camera and use it was a profoundly emotional experience. I had bought a digital camera, so I had no need to get out to process the film. The back verandah became not only the venue for my desperate recovery exercises, but my translation of my daily intimate vision into images.

The poignant leaf still compels me. It was falling but was ‘saved’ – rescued from a certain path to becoming compost. It was fall interrupted. There’s a warmth to the image for me, even though it was a cold and wet day when I captured it. The tree had caught its own falling leaf.

When I was in the rehab ward my family was called in and asked to give consent for me to be shipped off to a nursing home. They did not assent. It pissed me off. I wasn’t asked – as if I was feeble-minded. For the record I was back in full time work 12 months later. I was falling and I was saved. I am grateful my family saw more in me than the hospital staff did.

The other images I took that season remain as potent reminders because they speak to me in different ways, always evoking my mood and the tone of the day. Autumn in the Blue Mountains is a special time, and this was my first full season, post-escape.

Conclusion

When I was setting up the blog, I struggled to find an image that wasn’t just a bland but pleasant decoration. I mean how do you represented the disability inclusion challengedecoratively? I didn’t want images of people with disability or their assistive paraphernalia. That would be a case of flogging the bleeding obvious and descending into facile descriptive representation.

Autumn leaves fall and are discarded in the great annual cycle. I watched a whole tree of them drop until only a few remained, and then, finally, just one. Okay this may be a case of ‘you had to be there’. I am not asking you to agree that the image is laden with meaning for you as well. It’s just a leaf for God’s sake. But it didn’t fall in front of my eyes, and I saw it there long enough to form a bond and create a relationship with it.

There, but for the grace of God [and family] would have gone I – to a human compost heap. But I remained, held by faith in me.

Introduction

I am grateful to the Canadian government for amending the now little heard refrain – Nothing about us without us – to – Nothing without us. 

I was reminded of this recently in conversation with some fellow members of our local council’s Access Advisory Committee. We were meeting with representatives from the National Parks & Wildlife Service to discuss development of a parking area at a very popular site.  There were 2 existing allegedly accessible parking spots, but the wheelchair user had demonstrated that there was only one. She needed the other spot for her side ramp. I had to park elsewhere. 

We had a lengthy conversation about the realities of accessible parking spots. We are looking forward to seeing how our input will be translated. Apart from the wheelchair user, there was a woman who used a wheely walker. I had my ever-present Canadian crutches. We were a fair representation of people with mobility challenges whose needs for accessible parking varied.

It is worth noting that as we talked the carpark was steadily filling up. It became evident that the existing regular parking spots were way too narrow for all but the smallest cars. It was a chance to argue that maybe the new parking area might have larger bays. Lots of people would benefit – pregnant women, parents with toddlers, large people, older people who just need a bit of help to get out of the car. 

Given that the priority of the development was to increase capacity I don’t think there will be any will to sacrifice numbers for width. But we may have made a compelling case for a safe and sign-posted drop off and pick up area. Not a perfect solution by any means, but better than what was planned.

This got me thinking about who speaks for whom. Solve for disability and everyone can benefit. But the emphasis must be on ‘solve’, not just talking – so who speaks matters.

Appropriate representation 

A friend recently told me about having to endure a briefing on disability by a person with no evident disability and who made no claim to have one. The presentation carried an evangelical tone and had a lot of ‘mansplaining’ content. The audience wasn’t unfamiliar with disability, but the speaker assumed they were. It’s an easy guess the speaker had no disability and was new to the theme.

The theme of the talk concerned a policy area that has been a sore point for people with disability for a few years now. I was having discussions about it in 2019. There’s nothing complex or difficult about it. It just needed action.

I am not going to suggest that only people with disability should work on disability related policy, but there should be adequate representation and that means numbers beyond tokenism and with sufficient authority to have influence.

Having existential skin in the game is a key to making progress and driving positive change. There is no substitute for the intimacy of lived experience – to give subtlety of insight and urgency of action.

My friend’s experience bodes ill. The messenger had no heart, no insight, no urgency, no feel for the need, or the form fulfilling that need must take. The messenger spoke aboutpeople with disability, not for. That’ the difference.

I do not excuse the intent, because that was to act on terms that suit those with no existential skin in the game. Ablism still dominates – controlling what challenges are considered, how those challenges are defined, and how a response is crafted. What was a live issue 4 years ago remains unsorted. A small team of people with lived experience of disability would have had a solution the issue by now. We have a sense of urgency others without lived experience do not get.

Ablism is dominant because people with disability are a minority. But its not about numbers. Its about whether the majority is inclusive, and that means whether it is empathic and insightful – responsive to lived experience in a way that triggers a sense of urgency. Inclusivity is not an intellectual exercise. It is not a philosophy. It is a heart response that recognises a person with disability is one of us [and that goes for every instance of apparent difference]. We are wired to look after our own. Inaction prevails when those who might benefit don’t sufficiently belong. 

It’s not okay for anybody to speak on behalf of those for whom they do not have a sense of kinship at a level that triggers a need for urgent action. We can negotiate how urgent, but a sense of urgency must be the ever-present backdrop. The right to be included isn’t a gift to be bestowed when its convenient and expedient to do so.

Who is speaking for us?

I was sent a link to a story about a person described as a disability advocate. They have a website which I checked out. I sent an email in the hope of triggering a conversation. No response. 

I think we need to distinguish between people with disability who carve out a place in the public spotlight and who are a positive representation of a person with disability – and actual ‘advocates’.

This was brought home to me a few years back when I had a lengthy conversation with a person who was once prominent. I am not going to identify them because I want to make a point and do not want to seem to shame them. They were paid good money to speak at an event and were introduced as a ‘disability advocate’. But their knowledge of disability and related issues was scant. They had the decency to be embarrassed when this became apparent.

I do not begrudge people with disability and the ability to make it in the public eye. The opportunity to generate an income is important. Done well it sends a positive message as such people are attractive and entertaining. There are, for instance, some great comedians with disability. But this isn’t me. I am an introvert. Still, I can celebrate the extrovert and wish them all success.

But being entertaining and a likeable representation of a person with disability doesn’t mean you are an advocate in the full range of meanings that are possible. But maybe I am just being hung up about the meaning of that word. I can be a bit pedantic at times.

These people are, in a sense, advocating for people with disability – we can be outgoing, nice, friendly, entertaining, and amusing. We can be included! Yeah, but we can also be introspective, cranky, and challenging to engage with. Our entitlement to equity and inclusion isn’t dependent on whether we amuse others, or are even liked. There’s a risk here.

I wrote an earlier blog essay in reaction to a person was styled as a disability advocate on a current affair show. I thought their interpretation of a scenario was misguided and not in the interests of their client. It seemed to me they had issues they needed to sort before becoming an advocate.

Advocacy is not a simple thing, and I may be guilty of having a fixed idea of what it is – and hence disappointed when others don’t live up to my rigid interpretation. That said, it is an important function whose relevance will not diminish any time soon. We still need whatever can be offered [so long as it is competently done]. But we must be careful of what we assume the word means – and what consequence we imagine flow from whatever form of advocacy we accept.

The illusion of diversity

Having a person with disability on a panel or a committee is not genuine ‘representation’. Having at least 3 is better, so long as they don’t have the same disability type.

I have a mobility disability. When I became DEN [Disability Employee Network] Chair, I was expected to represent all staff with disability. I created the Guidance and Action Team [GAT] of 15 members. I had constant input from DEN members with a variety of disabilities – blind, deaf, autistic, living with chronic degenerative disease or mental illness, and mobility disabilities. I was schooled, sometimes severely, for several years when I got things wrong, had stupid ideas, or just didn’t get an issue. I got ‘guided’ passionately.

I could represent me perfectly well, but all the members of the DEN? It took a few years before I felt confident doing that. I had a lot of conversations – many I cannot use in essays because of the level of personal detail. Representing people with disability isn’t easy. There’s a lot of work to be done.

This means that thinking you are being diverse and inclusive by having one person with disability involved in whatever you are doing is nice, but wrong in how that good act is interpreted. The problem is that we naturally assume one person is representative of a whole set, rather than seeing them simply as a non-representative, but indicative, member.

Diversity is a powerful and important idea, and every step we take toward it benefits us. But there’s a difference between being committed to diversity and imagining that having a ‘representative’ from a given diversity set is ‘job done’. They could be a mere token to comply with some bothersome policy. Or worse, an ableist evangelist with no clue at all and a ton of self-referential zeal has decided they have a mission.

If you want feedback from people with disability on, for example, a committee you need at least 3 people with different disabilities – and even so you will still have only an indicative, not a representative, view.

Indicative views are invaluable if they trigger more insightful and empathic responses. But please, think ‘indicative’ rather than ‘representative’. And never let the ideal be the enemy of the okay. If one is all you can get, that’s okay – just see the situation for what it is – indicative, not representative. Fight for more.

Representation is a great ideal to aim for, but if we understand the diversity of disabilities and how they are experienced we must also understand that ‘indicative’ is probably the best we can do. That makes it more critical to choose who speaks for us wisely. As I have shown, advocates are neither uniformly performing the same role, nor necessarily knowledgeable or competent. The same applies to ‘representatives.’ 

Conclusion

Disability is diverse in its manifestation and how it is experienced. The best we can aim for is to stimulate empathic loving responses to each individual with disability.

The Canadian government understands that everything matters. Nothing in the span of government does not impact people with disability. But governments can turn any good idea into a quagmire of delay and misdirection. Living up to good intent demands commitment to action, not just sentiment, and a willingness to be open to corrective suggestions.

That means representation is critical. Who speaks for us matters. In New South Wales the Disability Council’s membership is controlled the Department of Communities and Justice [DCJ]. The government gets to say who speaks on behalf of community members with disability. The DCJ website says, “The Disability Council NSW is the official advisory body to the NSW Government on matters relating to people with disability and disability inclusion.” Calling it an official advisory body means it is a non-representative filter that will screen out what the government does not want to hear. It is, in effect, an executive conceit to imagine that representatives can be selected by public servants [with no transparency about whether any of the people involved in the selection were people with disability] and approved by a minister. There are no activists on the Council. Why do you think that is?

Beyond government, the voice of people with disability is heard in different ways. But it also spoken through different representations of the lived experience of disability – and with different motives. A passion for disability as a theme will include self-interest. That’s fine. It’s okay to have self-interest in performing a role. We all do it. But let’s be clear that there is a balance point beyond which self-interest becomes a conflict of interest.

Disability Inclusion is complex if you want to style yourself as a representative or an advocate and do a decent job on behalf of people with disability in general. A personality or an entertainer with disability is free to trade on their attributes. But if their disability is a feature and part of their act the community must not burden their right to be entertaining for money with an expectation of representation or advocacy on behalf of people with disability generally.

Moving people with disability out of the shadows so they have an equal spot in the public eye is vital. They must be seen as performers and entertainers in their own right. I think we are in a transitional phase when public and popular manifestations disability are still a novelty. Being entertaining and endearing still matters, whether you have a disability or not. Being entertaining and endearing with a disability – and in the public eye – is novel. Novelty isn’t representation or advocacy. It may be an aspect of it.

Advocating for acceptability as a public figure, or even a visible one, is only one aspect of what advocacy must be. I dare not attempt to make competitive comparisons. What I do know is that Disability Inclusion is complex and takes skill and knowledge. Please, don’t mistake one aspect as including the other.

And to those who have no intimate lived experience, no existential skin in the game, you are warmly welcomed as an ally. Your open heart is so appreciated. Do speak up for us whenever you can. But please, don’t speak for us. If we are not there to speak for ourselves, speak up and help us get there.

Please understand that the intimacy of lived experience and the reality of having existential skin in the game generates a sense of urgency and an outpouring of empathic connection that can’t be replicated or fabricated.

It could be that promised changes haven’t happened because we haven’t allowed the ‘right’ people to speak or be listened to. It has taken decades to carve out incremental changes in a climate of overt expressions of support. Who speaks matters. Who you listen to matters. Do you know who they are?

Introduction

I was talking with an Aboriginal friend with a disability about disability in Indigenous culture. It really isn’t a thing the way it is for us. 

When everybody is sharing the same life world and there are not so many that a community becomes layered and fragmented it is easier to see the diverse manifestations of being human as part of who ‘we’ are. 

There is evidence in the archaeological record going back a very long time of people dying at a mature age and with healed bones from crippling injuries. The conclusion is compelling – they were supported by their community even in a natural landscape which made no concessions for disability.  They were just ‘one of us’.

Likewise, neuro-atypical people were taken to be differently spirited – and even blessed. Some became shamans. Being different wasn’t a disabling matter. 

The power of belonging

In large populations we can categorize people and select for attributes, discarding from one category those who do not, or no longer, meet preferred criteria. They become dis-abled. 

Tribes and families don’t have criteria that can exclude a member unless it’s for severe misconduct. Otherwise, you are ‘one of us’ forever. 

It’s a sad thing to be reminded that war can be a guide to the better aspects of human nature. Here’s a quote from the Duke of Sussex, Patron of the Invictus Games Foundation:

“These Games have shone a spotlight on the ‘unconquerable’ character of servicemen and women, their families and the ‘invictus’ spirit. These Games have been about seeing guys sprinting for the finish line and then turning round to clap the last man in. They have been about teammates choosing to cross the line together, not wanting to come second, but not wanting the other guys to either. These Games have shown the very best of the human spirit.”

Evolutionary psychology reminds us that we are social creatures – our brains are wired to tribal. Even now we find stimuli in response to that instinct in family, friends, and membership of groups or communities. 

But we are also conditioned by the overarching culture of stratifying, categorizing, and excluding. We are induced to believe this is better than instinct. But the core of our well-being remains tribal. 

The Invictus Games remind me that men (and now women) have returned from war with disabled bodies and we have, as a culture, made no effort until fairly recent times to ensure they had access to the landscape we have made and modified. The defenders of our freedom have been denied the freedom to move freely in what they defended. And yet tens of thousands of years ago there was ‘one of us’ in a wild landscape aided to move around by the people among whom he belonged. 

Somehow, along the way of ‘evolving’ we have lost something.

Conclusion

Where people count for their humanity and not their utility they are not dis-abled or discounted. The standard logic of anthropology has been, for a long time, that Indigenous people were ‘primitives’ or ‘savages’. We stopped using that language in the 1960s. We started to be more concerned about disability inclusion soon after.

Contemporary neuroscience and evolutionary psychology are reminding us that our behaviours are grounded in natural inclinations. We haven’t evolved away from them. Rather we have ‘evolved’ more complex behaviours that have deflected and distorted our instincts and reflexes. We have emphasised utility over humanity and made distinction a matter of merit rather than accepting that difference still lives within the world of equality. We are all ‘us’.

My Indigenous friend reminded me that our ancestors lived inclusively, because that was their natural way and they did not have the imperative of utility forced upon them, even if we imagine their lives to be precarious. They still carried their crippled brother over rough terrain. We have only recently started making our built environment accessible. We are 100,000 years behind. 

Introduction

This can be a hard topic to discuss frankly because it will trigger questions about capability and efficiency that can haunt staff with disability – a fear they are only tolerated and not genuinely included. The focus must be on inclusion. But let’s get beyond fears and anxieties and dare deal with what is real. 

I am hoping this essay may begin a series. If you want to add your voice, see the email address at the end. This first essay is my perspective.

I contracted Guillain-Barré syndrome [GBS] in April 2008 and was left residual disabilities impacting my ankles and hands. I need support to stand and walk – I use Canadian crutches – and my grip is impaired and weak. I returned to work in September 2009 after 10 months in hospital and a period of rehabilitation at home.

Disability adds a burden when trying to match normal expectations

Getting to work can take an energy toll as well as additional time. This can be in terms of cognitive, sensory, physical, or emotional demands that burn more energy. And it can start when the alarm goes off in the morning. 

Getting ready for work for me meant working with an impaired grip and aids to get ready. That was so slow I didn’t have time for breakfast. Getting up and getting out of the house had to be a focused effort. There was always a risk that if I lingered over a coffee my enthusiasm would drain away. Breakfast became a reward I permitted myself only when I had reached my destination.

I can’t walk from home to the station despite the fact that it is only 1.3kms away. That’s more than an hour’s walk for me. A solution was to catch a cab to get the station. Even with the Taxi Transport Subsidy Scheme [TTSS] that was still an additional $100 a fortnight. 

Travelling by train was, for me, a state of constant low-level peril. Trains do not wait for me to get up and get to the exit door, or for me to find a seat. Standing and walking on a moving train is risky. Ramps can be steep and must be negotiated with great care. Negotiating crowded trains with crutches was challenging, especially when the train was lurching. I often needed to get up 5 minutes before the train arrived just to ensure I could be close enough to the door before more people swarmed on. Quite often the station staff were either late with the ramp or didn’t come at all. Arriving on the platform was always a relief – one thing over, and the next about to begin.

Travel from stations to work location by foot demanded constant watching where my feet and crutch tips are to avoid holes, uneven pavement, loose gravel, debris, and other stuff it’s not good to step in. 

The thing about walking with Canadian crutches is that you walk with legs, arms and shoulders. It isn’t difficult. It just burns more energy physically and cognitively and sometimes emotionally. 

The upshot of this is that energy levels are not as high as they might be by the time I arrive. This means that my enthusiasm may not seem to be strong. I could seem distracted, low energy and unfriendly. There have been plenty of times when travelling to a work site left me feeling so drained. I made a practice of ensuring I had about 30 minutes recovery time on arrival. That was time for a coffee, something to eat, and a chance just to recover my composure.

Walking with crutches in an office has it it’s downsides. I am slow. I can’t carry stuff and I take up space. Also, where I sit matters. At a shared table I need to be at an end so if I need to get up, I don’t disturb people either side. Depending on the floor surface and the chair I may not be able to rise without turning to one side and using the table for support. I also need to be near a wall where I can rest my crutches and get them when I need to. An alternative where the crutches are placed out of reach and must be fetched by somebody is not acceptable. That makes me dependent on somebody and that’s not okay.  

There have been plenty of days when I have arrived back home drained and capable of little more than staring at a wall. It hasn’t been the work demand that has done that. It’s been getting to and from my work site.

I have spoken with colleagues who are blind, deaf, wheelchair users, rely on prosthetic limbs or who have degenerative illnesses. Each has their own story about the sensory, cognitive, physical and/or emotional demand on their energy levels. It has been disturbing to hear the same people sometimes characterized as withdrawn, short tempered, not sociable and so on. 

In contrast meetings conducted by and for staff with disability, where there’s shared recognition of energy demands, have been lively and happy.

Everybody has times when life events can drain us. Parents have demands that are seen as ‘heroic’ – being a new parent isn’t easy. But we talk openly about it’s because it’s a common [and good] experience – and it comes to an end. Carers and people with disability don’t talk openly as a rule. Those stories are not part of our sociable chat.

A word or two on dependence and independence

We are naturally social folk who are happy to extend courtesies to others. I appreciate help to do what I can’t – mostly to do with carrying stuff. That means that getting me a coffee for example is more than a courtesy, it’s also help. 

A sense of self-independence means that I will often refuse what seems to be a courtesy or an offer of help if it is something I can do for myself. It is not that I am ungracious, it is that because I must rely on help, I prefer it to be only for what I cannot do myself. That is important to me. Sometimes doing something takes time and looks as inelegant as it feels – but the struggle is important. Being as independent as one can be is a big thing. It can be tempting to get somebody to do something just because you can’t be bothered doing it for yourself. That’s a temptation to be resisted. At worst you can develop a reputation for being needy and folk help you because they think you are less capable than you are.

A cruel assessment of capacity

Not long after I returned to work after an 18-month absence I had a strange and unsettling encounter with my line manager in a team meeting. She chose, for reasons best known to herself, to openly observe to me that my pace of work was too slow. She said she expected a certain pace of work from her 9/10s, an expectation not hitherto articulated. I had become thoroughly accustomed to demeaning conduct in my 10 months stay in hospital, so I wasn’t fazed by her conduct – just angry at the presumption that this was an okay way to act. I submitted a formal complaint about her conduct which included a request not to be supervised by her. She moved on soon after, unrelated to my complaint.

I returned to work 6 months after discharge from hospital. I had had no counselling support. My employer was supportive in welcoming me back. My colleagues were astonishing. My managers were unprepared and needlessly harsh. They had no idea what to do and no script to work from.

It had taken me several weeks to recover my bureaucratic brain. For a time, I looked at stuff I knew I knew with a blank mind. I figured that coming out of the existential maelstrom had left me still a bit wiped out.

It wasn’t the assessment of my slowness that irked me. I was slow but improving steadily. I would have begged a transitional accommodation for a few more weeks had the conversation been private. But it was public. I remained silent, mostly to spare my supportive colleagues the discomfort of a reaction that was not their business. I had been assessed in the rehab ward as fit only to be consigned to a nursing home. I was back at work fulltime 12 months later. Slow? That was a mild cruelty by comparison. But it was still not okay.

The discomfort of uncomfortable consciousness of capacity

I was never a touch typist, but I was a decent 6 fingered hacker who got along at a decent rate. I came back to work with 2 functioning index fingers and not much else. I returned to work in late September 2009 and left my employer in June 2021. In that over 12 years I have had no adverse comment about the speed of my work nor its quality. In fact, I was praised fairly frequently. Nevertheless, there is a nagging anxiety that you are vulnerable to a nit-picking evaluation.

The reality is that when you have a disability that is perceived to impact your output – volume and quality – you do worry whether you are meeting the ‘inherent requirements’ of the role. That’s a reasonable concern. There are times when the nature and degree of disability is such that continuing to work is just not realistic. Usually, people know when they hit that stage. There are exceptions though. Severe mental illness can lead to distressing encounters with a staff member who must be obliged to go.

But there are other times when ‘medical retirement’ has been used as a weapon to exit staff whose disability has become the focus of bullying. Modification of the role or redeployment is not considered.

I know that an acquired disability can have a catastrophic impact on employment prospects. I had to confront the very real risk that I might not be able to return to, or keep, my job. My home would have to be sold and debts somehow handled. I was lucky, and I am grateful for that. 

There’s an offensive myth that people with disability work harder and are more ‘loyal’ than ‘normal’ folks. Yeah. That’s fear and anxiety, not some magical attribute of having a disability. The same myth says we don’t change jobs as often. Well, no, of course not. Why leave an okay situation for a potentially abusive one – even if you can win selection? If you have attained a situation that you can endure it is safer to stay there, even if it is abusive.

That happens. Staff with disability do endure workplaces where they are bullied because they know they cannot likely find an alternative job.

I don’t do abuse

I wrote up my 10-month experience in hospital in an essay titled GBS and Me and sent it the NSW Minister for Health [if you want a copy see my email address at the end]. That got me an invitation to a healthcare complaints conference.

I was subject to efforts at bullying at school and that gave me a deep distaste for that kind of conduct. Attempts to bully me at work have never turned out well. When I came back to work and was feeling vulnerable, the few attempts to exploit that vulnerability got shut down quickly. 

Because I had been working in disability at a time that a philosophy of person-centred care was being developed, I took that value set into hospital. In ICU I submitted a formal complaint against a doctor and a nurse for treating me in an abusive non person-centred way. I couldn’t speak and I couldn’t write but I got my message across. I got an apology from both.

Many of my colleagues are not so fortunate. Bullying of vulnerable staff with disability is still rampant. Coming back to work in an existential fog of trauma that is still alive is no easy thing. Being seen as different and non-conforming can render a person vulnerable to self-doubt and a lack of confidence. If they are uncertain about their right to be in their role because of fears of adverse perceptions of their ability perform, their vulnerability can be exploited by predatory individuals.

Individual capacity to speak out against being bullied or abused varies, so it’s not fair to assume that a colleague is okay because they have said nothing. Allies are important here. Looking out for workmates is something we do, but if we don’t understand what is going on at a personal level, it is easy to misinterpret silence to mean the situation is being handled, when it might mean despair.

Out and proud

Talk of disability pride irks me. My disability obvious. You can see me coming from a distance. I am not diminished by my disability. My humanity is intact. My wholeness as a person is not diminished.

I spent near 3 months in an ICU with a tube in my throat to help me breathe and another up my nose and into my stomach so I could ingest nourishment. For most of that time I was incapable of movement below my neck and at first only my eyes could move. In that presently useless body, I was fully present and whole.

In some places they prefer to say, ‘disabled person’. I insist on ‘person with disability’ because the personhood I experienced in the ICU was not disabled – just the body it inhabited.

The person I am took a disabled body back to work. Being present in the workplace with a disability is just part of the spectrum of being human. There’s nothing to be proud of – or ashamed of. If you are genuine about embracing diversity, accept the presentation of disability before you.

Talk of disability pride has mercifully diminished, but it still whispers in corners. I should feel pride to counter your shaming gaze? How about you feel proud that you are inclusive? I am okay as I am. 

These days pride has morphed into heroics. We are not your heroes either. The principle of Equity that often accompanies Inclusion and Diversity is important. We want Equity. Disability confers a difference that lives on the spectrum of Diversity. That spectrum doesn’t do good or bad – all difference is good – that’s the principle of Inclusion. 

It is interesting that research indicates that managers and executive don’t act on Inclusion because they are not comfortable talking with people with disability and fear giving unintended offence. I understand that. This is why I have written these essays – to remind folks that we don’t feel bad in ourselves because of our disability, but because of how we are treated. All worthwhile relationships and communication are built on a foundation of empathy and respect – and maybe even stretch to include affection eventually.

Exclusion in inclusion

A few years ago, I attempted to walk with a colleague from one office to another nearby. We had to cross 2 roads. She was blind and needed my help to cross the roads. There was a lot of traffic noise. She knew the route and was adept in using her white cane, so she outpaced me while chatting away. She couldn’t see I wasn’t close to her and there was too much noise for me to call out. It was a fractured walk. We got to our destination okay, but it was a farce – the blind leading the crippled.

I am outpaced by blind people, people in wheelchairs, even folks with broken legs seem to hare off, leaving me plodding along scrutinising the path for hazards. 

There have been times when I have needed a 20-minute start on a group outing for lunch, and 20 mins to get back. That’s 40 minutes of my lunch break without touching a bite. And I have to walk alone. Even the kindest colleague wearies of a pace so slow standing still seems like a gallop.

I was at a meeting and during a tea/coffee break nearly all were standing around with cups and biscuits. I can’t hold ceramic cups because the handles are too small or too smooth. I can’t hold the cup by its body because the heat bleeds through and burns my hand. I can use takeaway cups just fine and at home I use double walled metal mugs.

With crutches I can’t stand in a group with a cuppa or a biscuit – both are out of the question. So, I find a place I can sit and even when I ask somebody to get me a coffee and a biscuit I am left alone as if I want to be solitary. Sometimes, to be honest, that’s a mercy, but not always.

That meeting, by the way, was a Disability Employee Network meeting, and I was chairing it. Even in the midst of a spirit of inclusion I was inadvertently excluded. I wasn’t offended, just bemused. It was a deep lesson; one I hope I learned well.

The bliss of remote working

Before COVID hit I was working remotely. I had an allocated office space about 40 minutes away and sometimes it was advantageous to be there. I was expected to attend meetings with my team now and then, almost 2 hours away by train, foot and taxi. But I could work from home when I needed to do so, and that made a huge difference.

Not only did I recover my commuting time which I could translate into productive time because I wasn’t stressing out getting to and from work, my productivity shot up because I had more energy and could pace out my working hours over a longer time. I could be more focused for longer. 

Not everyone likes remote working. For some the community of workmates is critical to their sense of wellbeing. I am an introvert who enjoys solitude. I like to get into a groove and stay focused without interruption. I enjoy working. I can meet my social and communal needs through my network of admittedly nerdy types.

Research arising from the COVID pandemic argues that a substantial portion of the workforce performs better working remotely. The demand for in-person presence seems to serve the needs of a few as an idiosyncratic expectation, rather than an objectively valid demand.

The opportunity to work from home freed me from stresses and demands precipitated by my disability. I can start my working day fresh, unfazed by commuting demands, and I can end the day less drained. My work quality and volume, and my ability to support my team, or be supported by them, is unimpaired.

I am also safer working remotely. COVID vaccines do not prevent infection, they reduce the risk of death from infection. That’s a good thing, but COVID can be catastrophic regardless. My health status is such that avoiding contracting COVID is a seriously good idea. The prospect of having to wear a mask during a commute on a train and for the duration of being in an office is profoundly unattractive.

COVID has changed the landscape we operate in, and for people with disability the need to avoid an additional risk of debilitating consequences of infection can be a major concern.

Remote work isn’t for everyone, but for those for whom it is, there should be no impediment to it.

Conclusion

We have established principles of Equity and Inclusion that insist that disability is, of itself, not a barrier to employment. But not everyone gets that or agrees with it. A person with disability is still vulnerable to discrimination and abuse in multiple subtle and gross ways.

The reality of living with a disability is little recognised because sometimes it’s just too personal to talk about. We don’t live or work in a culture that encourages being open about the distressing, unpleasant or challenging aspects of disability. We feel vulnerable to being accused of wanting sympathy or having a whinge. But if we want empathy and respect – what we need to feel included – its time to be more open about those things that make us different [but equal].

There is no dispute that understanding the personal dimension in any situation builds empathy and improves the prospect of Inclusion. For that to happen a person with disability must be seen as fully ‘one of us’, and not set apart as ‘different’ in an unknowable way. 

Email address for the GBS and Me essay: [email protected]

Introduction

Following on from Part 1 I will begin with a journey through what my some of disability pains in the butt are.

As a consequence of acquiring GBS in April 2008 I have residual disabilities in my ankles and my hands. These have impacted my life in substantial ways.

Pain in the butt #1

I can flex my ankles well enough to drive, but not enough to stand and refine my balance unaided. I have a ‘Pringles’ balance – once I start falling, I can’t stop. I get around with Canadian crutches. Rather than being a biped I am like a chair (with 4 legs) or, in safe places, a stool (with 3 legs). I used to have a wheely walker but commuting with that thing on a train was a serious pain. I could ride only in the entrance area to carriages and had to sit on the walker for 90 minutes, away from heating or cooling. With the crutches I could get inside and get a seat – and get warm or cool.

My ankle malfunctions extend to making it necessary for me to lift my feet to avoiding them drooping, catching my toe, dragging, and stumbling off balance into a fall. This makes walking a deliberate and conscious affair. I look up at my peril and I also lose awareness of my walking at my peril. Walking is an intentional and conscious business that mostly involves watching where I walk, ensuring I lift my feet, and bring careful where I put my crutches. On a windy day at Echo Point a few years ago I inattentively placed my crutch foot on a small piece of a branch. It rolled, the crutch slipped, I lost my balance and fell.

Turning around is slow and inelegant. I am beyond the careless days of a smooth U-turn. Its 4-point turn mostly now – slow and deliberate.

I am slow at walking. I recently estimated by walking speed as 1 kilometre an hour. I used to walk at around 6.5 kph. I am, consequently, no fun to walk with. I have found well-intentioned companions almost fall asleep at that speed. I walk alone out of kindness. I have learned to divide my attention between watching where I put my feet and listening to audiobooks. I get through a lot of audiobooks.

The weird thing is that my ability to walk depends upon my shoulders, arms, wrists, and hands being operational. There have been a few times when pain in my wrists has discouraged me from walking out of concern that I might exacerbate a emergent condition.

Pain in the butt #2

One deficit in my stay in the rehab ward was getting an occupational therapist to work on my hands, which were contracting and locking up. We were able to save a decent amount of dexterity, but the only fingers I can straighten are my index fingers, and one of those doesn’t work well. Of my thumbs, I can press with the left, but can’t arch it back, and the right arches back but won’t press. 

My grip strength is poor to boot. There are combinations of shapes, textures, and weights I can’t handle. They would be no hassle to a person with unimpaired grip and dexterity.

Handwriting is not in vogue these days, which is a mercy because it’s a slow laborious process for me now. Thank god for Notes on my iPhone.

Pain in the butt #3

The combination of the first two results in a draining effect when I travel. I am okay driving in the country. I don’t like city driving because of the cognitive demand I feel needed to ensure my reflexes can meet contingencies. City driving is stressful as it is. It’s somewhat more so for me.

Travelling by train is okay when I am sitting down. Around Sydney there are hazards getting up while the train is moving – either to get off or get on and find a seat. Getting on and off trains requires the use of ramps, which are always perilous affairs. The ramps are of a certain size and the difference between the height of the train and the platform varies.

Away from trains I have the challenges of unfamiliar walking surfaces. It still feels strange to walk through an unfamiliar area and not look around, unless I stop. I must watch my feet

The overall impact of travelling is an added cognitive demand to stay safe which renders the experience draining and unpleasant. It’s an exercise in almost constant risk management. As a result I don’t enjoy travelling at all now.

I have fallen only twice while travelling. I wasn’t badly hurt either time – though my dignity was badly bruised. I need help to get back on my feet these days. 

Pain in the butt #4

Overnight travel is nightmarish at times. Accessible rooms aren’t. I have found only one that lives up to that name – at the Shearing Shed motel in Dubbo. It’s the only room where I felt safe having a shower without having to ask for any additional equipment. 

Many accommodation providers make reasonable efforts but fall short of their intent because they just guess what accessibility means. Sometimes the guess extends only to a randomly placed handrail on a wall beside the toilet – placed too high, too low, or too far away. Such placements may be ideal for those whose dimensions (height and reach) match the placement of the handrail, but they are few. There’s a place in Canberra that has a sign on a towel rail warning it is not handrail. The actual handrail is placed exactly beside the toilet and offers no help at all. The sign speaks volumes about the mindset of the operators. And, yes, I did tell them. A year later nothing had changed.

I have been in rooms asserted to be accessible where there has been a hob at the shower entrance, no handrail in the shower. The risk with showers is that you never know how slippery the tiles are. They may be safe for people of normal posture, but the moment you make a lateral movement anything can happen.

I often must ask for a chair in the bathroom in the event the shower is accessible, which is rare. But it’s rare such a chair available. Mostly washing is a perilous process of washing with one hand while standing at the basin, propped up by the other hand – and nervous as hell that the floor might get slippery if it gets wet.

An accessible room should be designed in conjunction with an accessibility consultant. Neither government nor the industry has any interest in establishing a standard by which assertions of ‘accessibility’ should be measured.

Pain in the butt #5

Accessible toilets. I need the hand grips that are in the full-on accessible toilets and in the ambulatory cubicles. And here there are common problems.

Accessible toilets are frequently used by people who lack toileting skills, rendering them unusable when they leave. They are also frequently used by people who have no need of the accessibility functions. So, they are often either occupied or unusable.

Most modern buildings have a single ambulatory cubicle that is almost inevitably occupied by a person on a long break checking their Facebook, or some such.

I get the need to go when you must, and an accessible facility may be the only one available. But, please, check Facebook later.

On the road most accessible toilets are properly designed and are mostly usable. But now and then I come across unaccountably dopey set ups. There’s a town in NSW’s Central West with a newly constructed accessible toilet, but the pan was around a metre out from the wall and way too far away for the handrail to be of any use. The door jammed in the frame and had no handle on the inside. I got out with difficulty, but I didn’t dare sit down.

Pain in the butt #6

All the things I can’t do now are a pain in the butt because I now have to pay for what I could once do. 

• I used to garden and do home handyman/maintenance things. No longer.
• I can’t move furniture.
• I can’t carry anything that requires 2 hands and walking.

Pain in the butt #7

I can’t maintain my love of photography as I used to because I now need to sit or lean. Now I practice ‘seat of my pants photography’ with my iPhone. That’s satisfying but now and then it drives me nuts that there are somethings I can’t photograph as desired. If I can’t park or sit in the right spot the thing I see and want to shoot lurks frustratingly out of my capacity.

Pain in the butt #8

I love reading. Before GBS I was spending $1,500 or so a year on books. Now my grip disability makes handling books a struggle and the act of reading a chore. Mercifully I have access to ebooks and audiobooks. I can still cater to my love of books, but I have lost that sensuous connection with the book itself. Ardent readers will know what I mean. The upside is that ebooks and audiobooks are way cheaper – which is good, because what I save on books can go towards paying for the services I can no longer perform.

Can there be an upside?

Don’t get me wrong. I don’t want to insist there can be no upside, and it’s all a sense of loss. The loss is real, and it is seriously a pain in the butt – across every dimension. It is serious loss too, and it can be injurious on a personal (psychological, relational) and financial level.

The upside for me is, in a sense, about character building. When you have a lot taken away you can’t cry endlessly over what has gone. You must reposition yourself. A lot of this is evident in public disability heroes, especially those who have made a name in sports.

I have to admit I am a better person now than I might have been, had I not acquired GBS. Now this is a delicate matter, and I do not want to suggest this should be true for everyone who lives with disability. This is just my personal perspective.

I am not here speaking for the disability sporting heroes – or anybody. I see disability heroes justly celebrating what they have achieved. But is it an upside or a compensation? Studies in trauma suggest that heroics can be a way of coping with unprocessed trauma. I don’t presume to know how any other individual comprehends their situation, challenges, and achievements. They must speak for themselves.

Conclusion

Disability is, as the name suggests, a loss. How we handle our losses is a personal affair. The net consequence is usually a loss, even if some gains are made. In calling those gains ‘upsides’ I am acknowledging that, depending on one’s values and philosophical orientation, there are opportunities to benefit as we respond to disability. But will those gains off-set the loss and lead to a net benefit? Probably not for the majority of us.

A few years ago, I asked myself whether, if I had access to a time machine, I would go back in time and not get on that train on that morning I became ill, and that illness morphed into GBS. I decided I would not. But that was an imagination game, and I cannot assure you, were it a real prospect, I would actually refuse.

What my imagined decision not to go back told me was that I had a strong sense of personal growth. I was forced to confront elements of self as I recovered and adapted. It would be an utter waste of a personal catastrophe not to grow personally. 

That does not mean I miss what has gone. When I am in bed I am ‘normal’. When I wake up and get up the abnormal returns. I think this true for acquired disability, especially of a radical nature. We have a memory of what it was like before, and that will not be eradicated.

A few days ago, I was at Wentworth Falls lake for an early morning walk. I watched a woman walk by with an unusually elegant and fluid gait, and thought, “Gee, I used to do that.” Then I was off, slowly, eyes scanning where might next footfall would be. I walk there because there is an accessible concrete path, and places to sit so I can enjoy looking around and being there.

Introduction

Disability is a loss which can be painful, distressing, isolating. It is a loss of function – physical, sensory, or cognitive – for which adjustment, adaptation or accommodation is necessary to ensure inclusion and equity. But what change is needed in the person with the disability?

The social model of disability is a useful contrast to the medical model. But neither model honours, nor even acknowledges, the fact that there is also an existential element – what the person with disability experiences.

This leads to the objectification of the person with disability. This was my experience in hospital. The medical model dominated. Nobody asked me how I was handling the experience of my body becoming utterly useless. 

The social model of disability has a lot of merit in driving access and equity in the social landscape, but it is not an absolute stand-alone model. Disability is disability regardless of context. Yes, the social environment can be non-inclusive, and that’s an issue. But the experience of disability is still there, in the body, no matter where we are. My home is not a social environment. Nothing can contradict the fact that I cannot walk unaided no matter how amenable the environment is.

To me efforts to define disability as an environmental issue are well-intentioned but misguided. It is partly true, as is the medical model. But my disability is not mainly a medical problem nor an environmental one. Both are domains of authority and power beyond my experience. They are about me as seen by others. I must have power and authority on my own account.

The existential component

Rather, I suggest a triangle of 3 elements with interlocking merit – medical, social, and existential (personal). All 3 must be employed to create the outcomes envisioned by people with disability and those sympathetic and responsive to their needs.

The existential element is about the experience of living with disability being permitted to be an integrated part of way we think about disability. It requires courage and a sense of safety to speak, and empathy to listen and imagine.

Disability has degrees of impact on one’s lived experience – from a hassle to a catastrophic change. It is not a case of being always normal + a feature (the disability). The feature can radically alter the normal, destroy it in fact.

Life can generate adversities that create changes that we do not describe as disabilities, but which have a similar impact because of stresses or traumas that arise. This is largely a question of language and definitions that belongs to another important discussion. My purpose here is to acknowledge that the existential element is not unique to disability – just that it has been neglected.

Singular or binary conceptions of anything are extreme. When I worked in psychiatric hospitals on the early 1970s the medical model of disability prevailed. The inner life of the patient was unimportant. As we evolved the social model, we rejected the extremes of the medical model. The organisation People With Disability Australia (PWDA -pwd.org.au) says of the social model:

The social model sees ‘disability’ is the result of the interaction between people living with impairments and an environment filled with physical, attitudinal, communication and social barriers. It therefore carries the implication that the physical, attitudinal, communication and social environment must change to enable people living with impairments to participate in society on an equal basis with others.

A social model perspective does not deny the reality of impairment nor its impact on the individual. However, it does challenge the physical, attitudinal, communication and social environment to accommodate impairment as an expected incident of human diversity.

The necessity to add that the social model does not deny the reality of the disability or the experience of it. But it suggests that here is an issue poorly handled. The existential element must be mentioned but not included. Doing this includes it, but weakly. The experience of the person with disability is reduced to almost a footnote – just part of human diversity.

In any effective system we need 3 elements at least. In this context we need the experience of living with the disability (existential), the fact of the disability (medical), and the environment in which the individual lives (social). If any one is weak or absent, like a 3-legged stool with only 2 good legs, it will become unstable or fall over.

In previous essays I have noted, among managers especially, that empathy is often impaired. There seems to be a link between power and the loss of empathy that is innate in organisations and communities beyond a certain size and level of complexity. On a community level this is why we need organisations like PWDA. We create mechanisms to overcome an empathy and response deficit because we need to do so.

Response to people with disability is most positive and strongest among people who have direct experience of disability – those who have entered the existential domain as experiencers of impairment or as carers or intimates (friends, family members).

I have found that getting around on Canadian crutches triggers responses from people who have injured their legs, had hip or knee replacements or who have close friends or family members who have had similar experiences. What has intrigued, and moved, me is that I also get empathic responses from people who appear to have suffered significantly in their life experiences, but haven’t needed crutches.

The existential is at the foundation

I learned, when I briefly worked with a 9-year-old girl who was blind and deaf in a psychiatric hospital, that the experience of the patient was discounted as unimportant. She was objectified. Care of her body was the only concern. This experience was fundamental to me – to see that in a ‘care system’ there was no recognition of an inner life. 

The child was found locked in a shed on an isolated property by electricity service workers who had arrived to advise power was to be cut off for some time. I encountered her in a children’s ward where I had been newly assigned. I was directed to feed her an evening bowl of what looked like thick soup. There was some giggling going on when I was given instructions – tie her into a chair using a sheet and spoon the food into her mouth. Simple.

But she didn’t take to being spoon-fed, so I got rid of the sheet and held her hand while I offered the spoon. She ate it all. I then led her back to her room by the hand and she complied with no struggle. It turned out that the joke was that she was supposed to have sprayed me with food. When I return neither food splattered nor flustered my colleagues were astonished and disappointed.

The next morning, I was summonsed to chief executive of the hospital on a disciplinary charge – inappropriate touching. When asked to give an account of my conduct I described my logic – the child was blind and deaf, so touching was the only mode of communication available. It was strange that this was an issue. On the hospital ward I had bathed young patients and changed their nappies. Condemning a blind and deaf child only to limited compliance-based touch seemed to be cruel. I didn’t last long in thar role. It was no place for empathy.

We begin with the existential. When I was paralysed in the ICU in 2008, I was present in my inert body. I was thinking and feeling, imagining, and fearing, hoping. I was present and engaged.

The medical model ignores the existential unless it impacts its priorities. As the PWDA definition shows, the existential is acknowledged in the social model – but almost as an afterthought, lest we forget completely.

I want you to think about a model of disability as EMS – Existential, Medical & Social. All 3 elements are necessary.

At the very least living with disability is a hassle

I want to begin to explore the existential dimension of living with disability in the rest of this essay and subsequent ones.

My brother, who is a wheelchair user, and a NDIS client, recently reminded me just how frustrating life with disability can be – albeit in a small way. We had sent him some funds for some fine English stout to sip responsibly on his birthday, but he couldn’t get out to buy it. His support worker had COVID. He had his birthday beer a few days later.

Just looking at my family I don’t believe we have a higher proportion of disability than others. Two of the 5 siblings have major mobility disabilities, and I have a nephew with Chronic Fatigue Syndrome, a niece with an intellectual disability, and another niece whose daughter has been diagnosed as being on the Autism spectrum. The testimony from all that it’s a pain in the butt to live with and manage living in the world with disability.

Hale Zukas reportedly said that disability is “a tremendous hassle”. That’s very civil of him. He was a passionate campaigner for accessibility rights. Here’s a link to The Guardian’s article on his passing, in case you missed it in my earlier post – https://www.theguardian.com/society/2023/jan/08/disability-rights-warrior-hale-zukas-life

The trouble is that we who have noticeable disabilities are often assumed to experience no more than we exhibit. But there’s a ‘secret life’ to living with disability we don’t talk about much, if at all.  

Its time that ‘secret life’ was acknowledged.

The point

People with a particular disability are not magically experts on all types of disability. The idea of ‘disability awareness’ is great, but impractical without people with disability communicating what it is useful to be aware of – and often their message is non-obvious.

Researchers have found that managers, and maybe colleagues also, are inactive in promoting greater inclusion because they don’t know what to say/ask for fear of giving offence. I guess there are some situations where that’s a real fear. But there’s a trick – build rapport first and create a psychologically safe environment. That may take time and the communication of unmistakeable good intent.

People with disability don’t usually talk about the experience of living with disability because they don’t want to be misunderstood. They are not seeking sympathy. They are not having a whinge. They don’t get asked and they don’t offer. Its an unintentional standoff that serves no good purpose for anyone.

I can’t speak for other people with disability about their experience. I can interview them so they can tell you – which I will do in subsequent essays. I have spoken in depth with (now former) colleagues about what they experience in the course of having to advocate on their behalf. Their personal stories can be heart wrenching at times. All I can say here is that I have been routinely humbled by what I have been told.

Conclusion

Normal people don’t usually have a disconnect between personal experience, medical diagnosis and environmental assessment, and when they do it is transitory. Consider a person with a broken ankle. The medical perspective is valid but does not touch personal experience. The world can become suddenly unaccommodating to a person with a broken ankle. This happened to my stepdaughter recently. And because its is an accident and temporary I check in with her to know how she’s going. I have a personal empathic reason, and an intellectual one.

Living with disability does not excite a similar level of curiosity, because its permanent. It is a strange normal that may be hard to comprehend. A former colleague with an arm and a leg prosthetic told me what it was like to get up and get to work. It wasn’t normal + 2 prosthetics. It was vastly more than that.

Nobody has asked me how I am handling living with disability – not once in 14+ years. My guess is that’s not a question anybody has framed. I am asked how I am going in general terms. The closest specific questioning has come from my GP, but that has been carefully calibrated.

I have asked others this question because, in the course of advocating on their behalf, I have wanted to get a good sense of a situation from their perspective. Even so it is interesting to me that people living with disability generally do not share deeper personal insights about their experience. I think one reason is that we are not used to being open, and that we fear being taken to be complaining or seeking sympathy.

In fact, we have often a lot to complain about, a lot to lament or acknowledge as losses or limitations. We are allowed to grieve, surely. Turning somebody into a disability hero can mean we can just focus on the heroics. This leaves them unable to engage with empathy because they cannot be authentic. I have seen in the eyes of public disability heroes a pain they cannot share through their persona. I wonder if they have become trapped as heroes.

Empathy is not sympathy. Empathy is at the foundation of a good community. It requires a foundation of authenticity. The Social aspect of the disability model is weakened in the absence of the Existential for it is there that empathy and authenticity are to be found.

My hope is that this essay will have shown why the triangle EMS model is needed if true, balanced, disability awareness is to be achieved. In later essays I will explore the spectrum of Existential experiences to help the reader develop a deeper perspective on disability..

Introduction

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

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

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

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

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

We under-estimate trauma

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

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

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

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

Trauma makes you tough, but maybe also hard

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

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

The othering of people with disability

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

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

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

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

Thank you, war vets, for PTSD

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

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

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

Conclusion

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

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

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

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

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

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

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

Introduction

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

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

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

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

The idea of neurodiversity and the Bell Curve.

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

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

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

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

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

To DIE for

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

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

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

Disability and Diversity

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

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

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

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

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

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

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

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

Why bullying matters

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

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

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

Conclusion

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

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

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

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

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

What’s your takeaway to chew on?

Introduction

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

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

A link to The Guardian’s article

Do please read this.

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

Conclusion

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