What if I told you I have a diagnosed cognitive disability, manage a team and run my own business? These are not typical scenarios you read about in stories about disability inclusion.
This article gives you an insider’s view of what it’s like to have an invisible disability. It is dedicated to anyone struggling to appear normal or professional in the workplace against all odds due to a disability or mental illness.
While working on another ‘wicked’ government policy problem …
It was 2015. I was helping hospital administration staff understand the newly formed National Disability Insurance Scheme (NDIS) and what it meant for people who may turn up at hospitals for disability support previously provided elsewhere.
How could people with disabilities make sure they could get access to disability services? What evidence did they need for the public health system to ‘justify’ their care? A great role; my nose to the grindstone, making sense of business cost models, the Diagnostic and Statistical Manual of Mental Disorders, disturbing population health statistics and cryptic public policy documents.
… my own disability had demands of its own My time after work was spent collecting diagnoses and professional options from an array of health practitioners, who I was hoping would tell me ‘what was wrong with me’. The diagnoses spanned Autistic Spectrum Disorder (ASD), Attention Deficit Disorder (ADD), Sensory Processing Disorder (SPD), chronic post-stress disorder and everything in between. In the simplest terms possible, I could not rely on my mind to register and respond to sensory, motor or social information ‘like other people could’. For example, my mind does not comprehend background noise sometimes. It’s not very predictable. My hearing can freeze randomly. When it happens, I have to carefully work out which noise is the most relevant using my mind and then furrow my brow to keep any information I’m hearing in my working memory.
When your mind cannot process sensory stimuli, it can shut down everything else. It was getting out of hand and I really needed help. The office conditions created a perfect storm. My workplace had polished offices with stunning views of Sydney Harbour but provided virtually zero personal space. I’d start the day appraising the likely machinations of air conditioners, electronic equipment, printers, people unwrapping plastic, apples being eaten at desks, staff conversation movements and flickering lights.
Sometimes I have no selective hearing, so multiple conversations in a small space meant I had to stare profusely and furrow my brow to not lose the thread of a conversation I was trying to attend to. My work relied on processing complex information, with progress often completely undermined by memory loss. With this extra load, random bouts of extreme tiredness are guaranteed. Depression: likely. Adrenal burnout and social awkwardness: inevitable.
Oh diagnosis, you art bittersweet!
I don’t recall ever landing on one single diagnosis that made sense to me. I came out of that process conversant in the language of functional impairments, clinical diagnosis categories and work health safety systems.
That said, being diagnosed was a great relief.
I had spent years turning myself into a pretzel to try to explain that I need to manage my exposure to noise and bright lights, why I needed to work alone more than others at the expense of informal team building conversations and going for promotional opportunities. I felt misjudged by colleagues about my working style, typically attributed to rough edges of my personality rather than the workings of a highly attuned machine constantly recalibrating its exposure to not blow a fuse. I had became one of those patients doctors dread and many managers best avoid. In my defence, I was forming the early insights about how a ‘sensitive nervous system’ was key to understanding the aetiology of cognitive distortions, poor social attunement and sensory maladaptation.
Without the diagnoses, I would have had to lower my career aspirations and just try to keep the job I had. Not working was not an option. It would have been really nice to have one health professional who understood the interface between health conditions, cognitive impairment and sensory motor stimulation.
Trying to fit in I felt guilty that my functional ‘requirements’ (I prefer this term than disabilities in some cases) were not as ‘bad’ as others and that once diagnosed, people at the more severe end of the spectrum, unable to feed themselves or hold a job, would be angry at my audacity to assume we were in the same boat. I associated ASD with digital programmers who couldn’t hold eye contact and just wanted to be left alone all day. ADHD people were either high-flyers with enough clout to have a team at their disposal or the poor misunderstood under-performers who could barely keep their job. SPD only happens to kids — the ones you see screaming in the supermarket when the lights are too bright or perhaps sitting in the corner of a room rocking. Right?
Well-meaning friends would tell me everyone had some quirk, that I shouldn’t worry about it. They were my friends. This didn’t help when the office air conditioner ramped up and I could barely stay in my seat without exhibiting Tourette’s like tics. In that moment, I needed to know that I can excuse myself for a glass of water and have a sympathetic person in the room who will ‘cover for me’. The ‘don’t worry about it’ only fitted when I could hold up my end of appearing normal or quirky within acceptable bounds. I was worried about suppressing my neurological reactions — I had already had major surgery from years of this stress and didn’t care much for further compacting my organs any more for the sake of a pay cheque.
Stand for yourself, then help others Being diagnosed has changed some things. I have professional endorsement to request modifications to my working environment such as working in different locations and having more regular breaks. In the scheme of things, the best modifications sometimes did very little. First and foremost, I needed to my lifestyle and do whatever I could do to diffuse the cacophonic messages inaccurately signalling danger.
I started to see more and more written about the under-diagnosis rates for women and girls. Everything I read confirmed my experience and I felt like I needed to speak up as a woman now adorned with this label. Talking to others about my process with disability diagnosis meant reconciling my deep ambivalence about the diagnosis. Diagnoses are labels that become part of our identity. While they may make me eligible for certain forms of assistance, they were more likely to stop me from learning how to create and live a life that suited me. Refer here to your pick of famous people with all manner of impediments who have forged this path well — Nikola Tesla, Tim Burton, Susan Boyle and many others, who lived within the bounds of a disability but didn’t let it stop them. If not carefully applied, a diagnosis can become an excuse to be small or to avoid life.
Following my contract on the NDIS, I moved into post-graduate study in psychology to understand the basis of neurological diagnosis and the role of culture and environmental stress in performance. It’s been a great relief to understand how disabilities like mine tend to be diagnosed, coloured by the difficulty that ‘neurotypicals’ (our term for ‘normal people’) have in making sense of our private desperation of trying to ask for what we want in the right way, at the right time, with the right person — and do it all again when we move roles.
My next article will have tips on dealing with disability disclosure at work. Follow more of my work at kate@katemcneill.com
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