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.
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]