Ausnew Home Care | My disabilities don't make me remarkable, or someone to be pitied

My disabilities don't make me remarkable, or someone to be pitied

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I have the privilege of telling stories about disabilities and the people who live with them.

Through these stories I embrace dignity, joy and respect while rejecting the idea that disability is a dirty word.

But my job, and in fact my daily existence, asks me to face the reality that living as a person with a disability can be difficult and even debilitating.

I am Autistic. I am proudly Autistic. Yet I live with a daily tension between pride in my disability, and struggle.

That struggle never fades — and it's made harder by people either holding me up as an inspiration or downplaying the hardships I experience.

(Warning: This story mentions suicide.)

I'm not inspiration porn

At times, it's been implied my successes must be in spite of my disability. And so it goes, like the sound of fingernails scraping slowly down the chalkboard, the phrase: "You are such an inspiring person… especially given your disability."

Once upon a time these compliments seemed novel and harmless. But for years I believed I wasn't good enough and even worthless.

I was still learning how to balance the concepts of pride and struggle. I felt I had a legacy of defeat to overcome after years of being told I was not "living up to my potential".

Moving beyond the feeling of disappointment felt like an achievement. But I now realise I was failing to recognise the problem with how and why I was being praised.

You see, being disabled is not by itself a spectacular achievement.

Placing people with disabilities on a pedestal for simply going about their normal lives isn't as empowering as it may seem.

To place disability qualifiers alongside a compliment means society fails to recognise and respect the whole person, and views disability as something to be applauded, rather than something to be accommodated.

When people with disabilities are labelled "inspirational" — not because of their achievements, but because of their disabilities — it creates a phenomena late comedian and activist Stella Young described as "inspiration porn".

"Using these images as feel-good tools, as 'inspiration', is based on an assumption that the people in them have terrible lives, and that it takes some extra kind of pluck or courage to live them," Stella once explained.

"For many of us, that is just not true."

Downplaying our struggles rather than offering real support

By acknowledging disability in this way, people also downplay the very real struggles that can exist for people living with a disability.

Like many Autistic people I have learnt the art of "masking" my autistic traits: scripting conversations, and attempting to be almost indistinguishable from my non-autistic peers.

I find myself hiding behind this mask, playing a never-ending guessing game around social interactions.

This effort to remain unnoticed in my struggles makes myself and others like me particularly vulnerable to being overlooked when it comes to our support needs.

It can feel like society demands I mask my autistic traits while going about my day the same way everyone else would — and isn't interested in accommodating my accessibility needs.

When referring to the way disabilities can be overlooked, Stella Young also said, "No amount of smiling at a flight of stairs has ever made it turn into a ramp."

Stella's explanation reflects the reality that often the onus of overcoming our disabilities is placed squarely on the shoulders of the disabled person, instead of the society that created these barriers in the first place.

It's the absence of a ramp, not the use of a wheelchair, that led to disability existing to begin with.

As an Autistic person, I have come up against society's unwillingness to provide appropriate supports and, at times, this has come at a devastatingly high cost to my mental health and wellbeing.

Unsurprisingly, Autistic people experience significantly higher rates of mental illness than the general population.

One worrying consequence of this is that suicide is a leading cause of death for Autistic individuals.

As a suicide survivor myself, I can attest that this reality can be dangerous, debilitating and devastating.

What I want you to know (and say)

If I could change the way I am perceived by others perhaps I would remind you that I live with a disability and I am very proud of my identity.

But I still struggle!

My disabilities do not make me remarkable, or someone to be pitied.

Rather than being praised for just being who I am, I prefer others to acknowledge both my strengths and weaknesses without judgement or prejudice.

Perhaps, this disabled life I live is exceptional — but not for the reasons you think!

Being Autistic means something as routine as going to the supermarket can be overwhelming. When my neighbours play loud music, it makes my home feel like a nightclub; and nightclubs themselves with their colourful lights, deafening music and crowded spaces are entirely off limits thanks to the overwhelming assault on my sensory processing abilities.

We need to be more mindful of the barriers and roadblocks society creates that are inherently disabling. This would make it easier to work together in finding ways of better accommodating people with disabilities.

I acknowledge though that I also have a great deal of privilege despite the challenges I face on a daily basis.

Compliments are not inherently bad and if I achieve something of significance, I enjoy the recognition as much as the next person.

However, for those of us living with disabilities, treating us with same dignity and respect as you would those without disabilities is much more empowering than unwarranted remarks and false compliments.

We are so much more than our disabilities.

So next time someone states "yes, I am disabled"… please, can we hold the applause?

Jessica Horner is an ABC Regional Storyteller Scholarship recipient, a partnership initiative with International Day of People with Disability.

Source: ABC

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