Month: February 2023

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%

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..