By Charbel Zada
There is a shared frustration, a sense of déjà vu, among people with disabilities, every time we have to remind people to be more considerate of our needs. How many times must it be said: ‘Nothing about us, without us?’ writes Charbel Zada.
My name is Charbel Zada. I’m a proud member of the deaf community, having been born with mild to severe sensorineural hearing loss in both ears, and when the government announced there needed to be an increase in the use of PPE and a shift to working and studying online due to COVID-19, I felt the collective wariness of that community rise up.
We were, once again, about to witness Australian society taking a course of action that would leave most people in the disability community feeling like an afterthought.
For me, with my condition, my world is small; small in the sense I cannot participate in conversations in person to the same degree abled people do. I deal with challenges such as background noise and fatigue from straining to hear everything that’s said. So, even when I’m there, I’m not really present. I struggle to lipread in online spaces such as Zoom due to poor image quality and computer lag. My small world has recently become even smaller.
I met the government’s announcement that wearing masks would be mandatory with annoyance. PPE is essential, that cannot be denied, but masks contribute to a huge, intense feeling of isolation for me, and for anyone who cannot understand what is being said without lip reading.
Mandatory masks reduce my ability to engage socially with friends and family, but, more importantly, they are barrier to engaging with health professionals (fun fact: people with disabilities have various comorbidities). My little world got even smaller. It was a catalyst for a particularly harsh depressive episode that lasted for months; a hole I’ve just recently climbed out of.
When the government asked people to wear masks, there was no consideration given to those who are hard of hearing or people with other auditory conditions who might struggle to understand what’s being said behind the mask. It was people in the disability community who organized resources on how to manage this.
Another brilliant example of the complete lack of interest in the wellbeing of people with disabilities from our government, on a much larger scale, is the Disability Support Pension. I have written about how demoralising it was to watch the government arrange supplements for people on JobSeeker, then pass over increasing the Disability Support Pension. I’m not demoralised anymore. I’m furious. I cannot think of a more explicit demonstration of society’s contempt for people with disabilities than refusing to increase the Disability Support Pension for some of the most vulnerable people in our society. We live in a country where there is room for a $260 billion defence budget. It would seem there is room for everyone except disabled people.
In Victoria, there’s a growing concern the disability support sector is headed for the same crisis of rising COVID-19 cases that the aged care sector is currently suffering through. Both of these crises are an indictment of our society’s apathy towards its most vulnerable people, fueled by the absence of a stable, well-trained workforce, appropriately supported by our institutions.
There is a shared frustration, a sense of déjà vu, among people with disabilities, every time we have to remind people to be more considerate of our needs. How many times must it be said: ‘Nothing about us, without us’? We have the right to be part of the conversation, and it is so important that we are, because when we’re involved, we can inform policies based on what works for us and what doesn’t.
I take heart from the inherent resilience of our community. This pandemic has seen the disability community come together like never before, and it is truly a joy to witness and be a part of, but I’m also exhausted with abled people making shortsighted policies.
We’re in unprecedented times right now, and I hope unprecedented times will bring unprecedented change. Perhaps we can finally be at the forefront of the conversations informing the policies that govern our lives and bodies.
Charbel Zada (he/him) is a proud gay Middle Eastern man with a genetic hearing disability. When he’s not being the co-founder and runner of the Sydney Queer and Disability Community Group, he works as a disability support worker while studying to become an accredited counsellor for queer youth.