International Day of People with Disability 2020

International Day of People with Disability (IDPwD) is celebrated on December 3rd each year. It aims to increase public awareness, understanding and acceptance of people with disability, and to celebrate their achievements and contributions. 

The themes for IDPwD in 2020 are 'Building Back Better: toward a disability-inclusive, accessible and sustainable post COVID-19 World' and 'Not all disabilities are visible'.

At Murdoch Children's Research Institute (MCRI), we are committed to fostering a supportive and inclusive culture for people of all abilities. We asked staff members to share their stories about living with their disability, particularly during this difficult year. Here are some excerpts.

Janet's story:

"I don't consider autism or ADHD to be inherently disabling, in the right environment they are the source of my true strengths and purest joy. When given freedom to deeply explore and communicate our knowledge in a calm environment, our divergent thinking, spontaneity, hyperfocus, pattern recognition, and observational skills are an asset. [But] workplaces are unpredictable, driven by agendas, egos, budgets, and hidden social machinations, which to neurodivergent people often seem arbitrary and at odds to wellbeing and productivity. 

It's not news to say that Covid-19 has been undeniably terrible. In fact, the feeling of ongoing uncertainty, disappointment at some people not following the rules, discomfort of wearing masks, pervasive loneliness, feeling constrained by curfews, kids needing attention, and the awkwardness and fatigue of zoom meetings – that's probably the closest tangible example that I could provide to neurotypical people of what autism and ADHD can feel like on a daily basis. 

Neurodivergent people are often described as being like the "canary in the coalmine" - the adjustments that work for us can benefit the whole workforce to varying degrees. The silver lining from Covid-19 is that many employees were able to try telecommuting and other adjustments that they were previously told were impossible, until they became necessary for everyone. Many people, regardless of neurology, found it suited them wonderfully, enhanced their productivity and allowed them to fit in other commitments. If made available to everyone, they could become a cost-effective addition to the wellness program. Accessibility really can benefit everyone."

Lauren's story:

"When covid-19 really started to take off, I made a difficult decision to remove myself from [clinical] work as I am immunosuppressed. Going from 12 hour shifts on the floor to office work day in and out was a real blow to my mental health. I found the transition from gym and physical nursing work to essentially nothing so demoralising. 

There are certain things about this pandemic that were really interesting to me. Suddenly everyone was really worried about their bodies, worried they were sick and didn't know it. "Normal" people suddenly knew what it was like to not trust their own body or their own intuition about their body, a phenomenon those of us with chronic illnesses and disabilities are more than familiar with. The discourse around lockdowns where many people expressed that everyone but "old and sick people" should be allowed to go about their lives and just keep the vulnerable locked up was quite hurtful to hear. 

It wasn't until an old colleague of mine got in touch and told me that a research position in her team was opening up did my mental health improve. I applied for the position and got the job. I had contact with patients again, office work with meaning and real purpose and a chance to do life-changing work. I have not required any extra resources in this position so far but my new manager is more than happy to ensure I have what I need." 

Susie's story: 

"COVID-19 became an extension of my maternity leave, and made it easier to transition back to work in August, as I started back with reduced days working from home. This happened after I was able to yet again take my medications and also have my child at childcare. My working-from-home days were planned around my personal life… as long as I did the hours and did all my work in a timely manner and to a high standard, everything was ok. Some days I started work at 2am, some days I'd break it up with a work-out in my home gym, my best days were days where I worked in my PJ's and took naps between 2-3-hour blocks of work. My mood was incredibly buoyant – I felt like I was achieving so much and really loved my work, and not at the expense of my family. There was a great work-life balance.

I know many are scared to speak up about their invisible disorders, however a lot of the stigma behind these conditions could be removed if we felt more comfortable to speak up about it. Help is achievable, if others know how they can help you. Support can be found, if only you ask or seek it out. I made a choice to let my team know about my disorder, which lead to others talking about their own conditions; some silent, some quite visible, and we were brought closer in the knowledge that regardless which one of us was having a bad/off day, the rest of us would jump in to help out as best we could. Don't be afraid to ask for help at work, and seek others with your disorder (e.g. social media groups) who can empathise and fully understand exactly what you are going through."

Katherine's story: 

"2020 has been the most confusing, draining, and isolating year of my life. 

I'm autistic, which for me means I have trouble 'connecting' with people and always feel like an outsider, I struggle to understand subtext in interactions, and every day I feel the strain of working and living in a noisy and bright environment that was definitely not built [for] me. Over the years I have worked towards improving my situation, [like finding] trusted colleagues to confide in and ask for advice, [and] by the end of 2019 I felt like I was finally starting to get to a really good place. 

I don't need to tell you that 2020 has turned all of that upside down. For someone who relies on stability and consistency to thrive, this year has been anything but consistent. I usually cope with change by focussing on the things that are in my control, but this year has taken away control to so many aspects of life it has become too overwhelming to even process them all. I feel lost. [But] I'm grateful to those who listen without judgement, show patience and acceptance even if they don't know the details of my difficulties, believe me when I do share my difficulties, and offer advice when they can."