International Day of People with Disability: CB Mako writes for Creative Control

Monday, December 7, 2020
By: 
CB Mako

A woman with her head tilted down and away from the camera, her short black and red dyed hair covering the side of her face
CB Mako

Disabled People of Colour are Erased from the Narrative

The year is 2018:

<Jumble of words; sounds of mumbling>

Me, replying from across the large oak table, ‘Yes, at Digital Writers Festival.’

<laughter erupting> ‘We just said that!’ they answered back and gave me a what’s-wrong-with-you look.

‘Sorry, I can’t hear well,’ I replied in a sheepish tone, and pointed to one of my ears.

My eyes panned the cavernous lobby with high ceiling.

High ceiling, lots of echoing, I could barely hear.

I realised, amidst the multiple chatter,

my hearing loss seemed to have gotten worse.

 

*

I felt disconnected, like everyone knew something I didn’t. When others around me announced they were withdrawing from social media interaction, Twitter was my link to the world. I followed accounts on inclusion, those that tweeted advice about invisible disability, about how to talk to hard-of-hearing people, and Australian Sign Language.

Through social media, I learned a new word not uttered in everyday life, but often felt: #Ableism.

*

On social media platform, Twitter:

@Aus_Hearing would you offer staggered payments or @AfterPayAU for hearing aids for those with borderline hearing loss? #AskingForAFriend a pair of hearing aids almost $800 (T T)

7:54 PM - 16 Feb 2018

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@Aus_Hearing Feb 17

Replying to @cubbieberry @AfterPayAU

 

Hi! You are best calling our free audiology service re this - business hours live chat here: www.hearinghelp.com.au or call 1800 740 301 - they can advise :)

 

12:49 PM - 17 Feb 2018

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Replying to @Aus_Hearing

@Aus_Hearing Thank you for replying xo

3:15 PM - 17 Feb 2018

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Replying to @cubbieberry

No worries at all! Please let us know if we can help further. Have a lovely Sunday ☺️

4:01 PM - 17 Feb 2018

 

I did not ring the service provider. If I rang, my call would have been forwarded to a call-centre. They would give me a standard reply to go visit the nearest Australian Hearing clinic.

Why was I too embarrassed to admit I had hearing loss? I was also too embarrassed to admit I couldn’t afford to buy a pair of the latest technology hearing aids, which suited my level of hearing loss.

You don’t look disabled enough1

#Ableism strikes again.

*

In the year 2019, pre-pandemic year:

‘It’s hereditary,’ my mother stated in a matter-of-fact tone. She and my father were visiting us from overseas.

‘Your sister—she is forty-two years old this year—has trouble hearing. Your cousin, Moira, who is five years older than you, is wearing hearing aids donated by your uncle.

I was surprised to find out that my generation already had hearing problems.

‘Did you know your father’s hearing aids cost one hundred twenty thousand pesos a piece?’ She emphasised ‘a piece’. This meant that a pair of the state-of-the-art, newest, and latest hearing aid devices were almost a quarter of a million pesos – over $7000.

My brows raised in surprise. The Philippines’ healthcare system was patterned after the United States of America, its former coloniser. Universal health care didn’t exist there. Decent healthcare was available through private healthcare insurance or people who could pay. No wonder carers and disabled bloggers from overseas had a different tone in their advocacy posts versus Commonwealth countries, like Australia with its universal healthcare system.

*

‘Did you notice it?’ One of the writers of colour on social media asked me through a private message.

‘Notice what?’ I typed back.

‘Disability is so white,’ she replied. ‘Look at the pictures in the article about mental health. Did you notice that the images of women and children were all from a white, mainstream narrative?’ The author, writing from Sydney couldn’t contain herself. She rang me instead. ‘Why were people of colour in the disability and mental health narratives excluded? Why were we being erased, like we didn’t exist ?’

‘I noticed,’ I replied, trying not to sound too defeated. ‘The authors writing about mental health were all white women. And when disability is included in literary festivals, the disabled representatives are from white backgrounds.’

She let out a heavy sigh.

I could feel the frustration all the way from Sydney to Melbourne. The same narratives repeat themselves all over Australia.

‘Did you see the latest compilation from one of the literary journals?’ she asked. I knew straightaway which one she meant. The choice of writers was formulaic: white man, white man, person of colour, white woman, white man from overseas, Aboriginal woman, Disability/Mental Health representative (a white woman), white man, white man. ‘If the publisher even considered diversity, their idea of diversity, when including disability, was a white woman,’ my friend added.

‘Representation matters, even inside disability.’ I said, ‘disabled people of colour must be included in the narrative.’

We were frustrated, exhausted. All I wanted was to hug her and tell her she was not alone. When our phone conversation ended, I slumped in my chair. I needed to write more about this.

Meanwhile, I wondered how a writer of colour — who was also a full-time carer to a disabled child — could raise money to buy a pair of hearing aid devices. I didn’t want to be left behind. And yet, I was among those who were falling through the cracks.

1 Caley Farinas and Creigh Farinas. “15 Common Phrases That Are Way More Ableist Than You May Realize”. The Body Is Not An Apology, (15 Feb 2018)

 


 

About CB Mako

CB Mako is a founding member of the Disabled QBIPOC Collective. Winner of the Grace Marion Wilson Emerging Writers Competition, shortlisted for the Overland Fair Australia Prize, and long-listed for the inaugural Liminal Fiction Prize, Cubbie has been published in The Suburban Review, The Victorian Writer, Peril Magazine, Djed Press, Overland to name a few; and in Anthologies 'Collisions: Fictions of the Future' (Pantera Press, November 2020), and 'Growing Up Disabled in Australia' (Black Inc Books, February 2021).