In April 2008 I came down with a particularly nasty bout of Guillain-Barré syndrome (GBS). My immune system staged a coup that was very nearly successful. I spent 3 months in an ICU on a ventilator (paralysed pretty much from the neck down), 7 months in a rehab ward, and 8 months at home engaged in desperate physiotherapy. I had time to contemplate how much I could recover, and the meaning of my life – as you do under such circumstances.
I returned to work after 18 months with ankles that didn’t work much and badly impaired manual dexterity and grip strength. It could have been far worse. While I was in hospital there was a determined effort in the rehab ward to have me shipped off to a nursing home, but my family put paid to that.
I am still fired up by the realisation I was so close to being junked. The Rehab Ward quit on me in under 2 months. I went back to that ward on the anniversary of my discharge to let them know they were wrong. My visit was not well received by some. I also visited the ICU – to say thank you. When I left, I was given a standing ovation by the staff. That, apparently, was because not a lot of folk leave with a pulse. They had done good work, and they were happy. The ICU and the Rehab Ward were in 2 different hospitals.
I came out of those 10 months in hospital with deep gratitude for competence and dedication and a bit of a fire in my belly about getting a fair go.
GBS turned my life upside down. I now had to pay for services I once performed to a reasonable level of competence – home handyman and gardener mostly. I went on a bushwalk solo – once. That was foolhardy, but so invigorating. If I had fallen, I would have had to wait until somebody walked by. I am naturally strongly independent – now I had to mute that attitude.
These days I get about with the aid of Canadian crutches. Even with what might seem like a comparatively mild disability an astonishing amount of the ‘normal’ world is on the spectrum between awkward and difficult to access to completely inaccessible. And a lot of regular interaction is no longer as inclusive as it once was.
The strange thing is that if I had a time machine and I could go back to that 2008 April morning and not get on the train where I believe I got the bug that caused my GBS I wouldn’t do it. GBS has cost me a lot, but it placed me in a position to gain much more than it cost me.
I say that with certain caution. But I like the post GBS me better that the pre GBS me. I am not saying I needed to get GBS, just that it has not been a net detriment. I can complain, but that would be graceless.
In November 2016 I unexpectedly became Chair of the NSW Department of Communities and Justice’s Disability Employee Network (DEN). I held that role until March 2020. During that time, it is generally acknowledged that my leadership was highly effective and innovative (I have written about it separately). I was privileged to be invited to present at two Australian Network on Disability (AND) conferences (2019 and 2020) on the innovative work the DEN had been doing.
In late 2019 I was tasked to develop my department’s 2020-2024 Disability Inclusion Action Plan (DIAP). I took an innovative approach that was subsequently encapsulated in the updated DIAP guidelines for NSW under the heading A New Approach.
My experiences with the DEN and the DIAP encapsulate my philosophy of disability. In 2014 I was inspired by the Scottish dancer and choreographer Claire Cunningham who observed that disability is just part of the spectrum of being human. She didn’t want to be ‘fixed’. I get that now even more so. Her talk on Four Thought is still available online. In 2018 I was ‘radicalised’ by Kate Nash, CEO of PurpleSpace – a UK org dedicated to supporting Disability Employee Resource Groups (ERGS – DENs). Kate woke me up to the notion that sorting things for staff with disability had to be skilful, strategic, and energetic. The time of accepting leisurely paced change as normal and okay had ended for me.
As DEN Chair I was contacted by staff with disability desperate for assistance in addressing serious issues of discrimination that, frankly, bordered on cruelty. The DEN’s Terms of Reference excluded advocacy on behalf of members – an odd condition that may have explained why the membership had declined.
Advocacy is fundamental for the justly aggrieved, so why eliminate it and anticipate an effective ERG? The answer is, I think, a desire to control or manage how change happens – on the organisation’s terms, rather than on the aggrieved person’s terms. That isn’t a sincere desire to address discrimination, exclusion, inaccessibility, or injustice on a personal level. It is an intent to comply with an imposed requirement on the organisation’s terms. Even those sincerely supportive of disability issues are captured by this – because this is how public sector agencies handle change – conservatively and slowly.
But when you are at the focal point of slow-moving compliance-focused change it seems like a tolerance for abuse. This raises a question about what might be the abuse tolerance threshold for an organisation? A breach of conduct rules that make management possible and smooth will be addressed with greater enthusiasm than a concern about the welfare of a subordinate staff member with disability.
This is, I believe, a condition that is inherent in organisational culture because of past values. It can be, and must be, changed by intentional and strategic action. Getting to real zero-tolerance of discrimination or abuse can only be intentional, and it must be strategic. It must be driven by intent – and that means a certain level of impatience must be present in all involved in driving changes.
I am committed to positive organisational cultural change as the foundation of addressing the needs of staff with disability (and others). In fact, intelligent strategic cultural change is the most important engine for driving positive change for staff with disability. It improves retention rates and make the organisation more attractive as a workplace for people with disability.
The goal should be high performance. There is no downside to ensuring your agency is inclusive and accessible. In a complex pluralistic culture, diverse and inclusive work cultures deliver the best outputs and outcomes. High performance benefits everyone. A high performing team is a safer work environment for a person with disability.
Likewise, a focused commitment to addressing the needs of staff with disability (in compliance with legislation and policy) benefits everybody. This conforms the Inclusive Design principle – Solve for One, Extend to Many.
Addressing the needs and rights of staff with disability is an investment in an organisation’s potential and performance. In NSW it is critical to achieving the goal of a “world-class public service.” https://www.nsw.gov.au/premiers-priorities/world-class-public-service