Posted by: Lisa Hill | May 6, 2022

We’ve Got This, Stories by Disabled Parents, edited by Eliza Hull

 

Black Inc Books is not just a Melbourne publishing house; it is an advocacy phenomenon, producing the ground-breaking Growing Up… in Australia series which includes

  • Growing Up Asian in Australia, edited by Alice Pun (2008)
  • Growing up Aboriginal in Australia edited by Anita Heiss (2018, see my review)
  • Growing up African in Australia edited by Maxine Beneba Clarke (2019, see my review)
  • Growing Up Queer in Australian edited by Benjamin Law (2019)
  • Growing Up Disabled in Australia edited by Carly Findlay (2021, see my review);
  • Growing Up in Country Australia edited by Rick Morton (2022, reserved at the library) and
  • a compilation issue titled Growing Up in Australia (2021)

This series celebrates diversity in all its forms, and is notable for the way each anthology of short memoirs gives voice to a wide range of identities and experiences.  But one thing they all have in common is that while all the contributors are shown to have agency in their own lives, none of them had a choice about their circumstances, which arose from genetic inheritance, accident or illness, or the decisions of their parents.

Growing Up Disabled, We’ve Got This, Stories by Disabled Parents is a companion piece to Growing Up Disabled in Australia.  But it offers a slightly different perspective because although some of these parents acquired a disability later in life after their children were born, many of these contributors despite an existing disability chose to fulfil their yearning to be parents and to exercise their right to do so.  For them it was a pathway that was difficult but worth it.

What reading this collection makes clear is that the judgements of others made things more difficult than they needed to be.  Sometimes this was because their choice to have a child was questioned, in a way that it never would be for would-be parents without a disability.  And sometimes implicit in the question was the hurtful assumption that the risk of having a baby with the same disability was not one that anyone would want to take.

Being a disabled parent is a rebellious act.  Disabled people should have the same right to parent as anyone else, but often when we decide to start a family we are met with judgment and discrimination.  We are questioned rather than supported.  We have to push up against the medical system, which is particularly problematic for disabled people.  And we have to confront how ableist society’s model of parenting is, even in the twenty-first century.  (From the Introduction by Eliza Hull, p1.)

Eliza Hull is the creator of the ABC audio series We’ve Got This and if you haven’t already come across it, I recommend listening to the whole series.  Some of the participants in the series are featured in the book, and tell more of their story.  Carol Taylor, for example, is a lawyer, fashion designer and artist, and her disability-led fashion labels have been featured at the Mercedes Benz Fashion Festival.  Which is a long overdue acknowledgement that disabled people are just as interested in looking good as anyone else. A quadriplegic since a car accident on her honeymoon, Taylor is also the mother of D’arcy, now fourteen, and despite her occasional doubts, he doesn’t think having a disabled mother is in any way different to any other parent-child relationship.  

It hasn’t impacted negatively on his childhood.  In fact, he credits it with teaching him the importance of patience.  He understands that Mum gets frustrated when she can’t do things independently and hates asking for help.  He has more empathy than other kids; he says he tries to always imagine what it must be like ‘in my wheels’.  He believes having a parent with disability has enabled him to always see the good in other people and never judge a book by its cover.  But don’t be fooled into thinking he walks around with a halo: like most fourteen-year-olds, he still has mum chasing after him at high-speed reminding him to pick up after himself and keep his room tidy.  (pp.192-30

You can hear Darcy speaking for himself about this in this podcast episode of We’ve Got This: From the Mouths of Babes. 

Family violence survivor and disability activist Nicole Lee writes about how when she was pregnant, everything around her was sending the message that mothers like her don’t exist.  But of course they do.  Now a grandmother, she always felt like the odd one out —

— in the birth classes, the waiting rooms, at the obstetrician’s or in the baby goods stores.  I felt like I didn’t fit; there was so much stigma. Maternity clothing was limited and didn’t sit right on someone like me who was in a wheelchair.  Finding a car seat — or a cot, highchair, pram or change table — I could use independently was impossible without modifications and some creative thinking. (p.215)

Lee was pregnant in the 90s, and still remembers the hurt inflicted by insensitive behaviour.  Do shop assistants get training now, so that they listen to what’s needed rather than show what’s popular?  Do they respect the fact that the customer is the person who’s pregnant, and not some random person beside them?  Do people running antenatal classes have professional development in respecting difference?  I hope so…

While We’ve Got This is a powerful and revelatory anthology, it has moments to provoke all kinds of emotion in the reader:

While there have been so many challenges in my parenting journey, there has also been so much joy.  Those beautiful precious moments when I was whizzing around the shops with my little one on my lap.  Or flying down a ramp listening to them squeal and giggle.  Or watching my three-year old child’s surprise as they stopped at my pop’s front stairs wondering: what are these and how do I climb them? (I realised they had not seen anyone use steps before.) (Nicole Lee, p. 221)

Or…

Multiple sclerosis was not our only adversary.  John Howard’s government was determined to force single mothers to shift from welfare to work and to punish Muslims for our failure to uphold ‘Australian values.’  My PhD thesis on Muslim women and transnational feminism was years overdue for completion.  The income I earned from tutoring and freelance writing was not enough to free us from dependence on Centrelink payments.  A disabled, brown-skinned, Muslim, welfare-dependent single mother sounds like a hate figure from an Andrew Bolt column, I thought gloomily to myself. (Writer and academic Shakira Hussein, p. 196).

The audience for this book is two-fold.  Many of the contributors mentioned that they felt unseen or under-represented, and so part of the value of this book is that it speaks to them and their experience within their communities.  But books like the ones in this series are also invaluable education for readers who want to be disability allies.  We should remember that there are more than 4 million Australian people with a disability — that’s 18% of the population or 1 in 6.   Let’s change things so that whatever obstacles they face, other people’s attitudes become less of a problem.

Editor: Eliza Hull
Title: We’ve Got This, Stories by Disabled Parents
Foreword by Jamila Rivzi
Cover design by Akiko Chan
Publisher: Black Inc., 2021
ISBN: 9781760642938, pbk.,,278 pages

 


Responses

  1. Great post Lisa… I heard most if not all of the series on the ABC. It was excellent. I’m sure the book is too.

    Nicole Lee is an absolute wonder given what she has endured.

    Like

    • There are so many others, Sue. Some of the most moving are the ones interpreted in Auslan or using a speech machine of some sort.
      The book also has photos of the contributor and a brief profile at the end of each memoir, and the photos are gorgeous. They’re usually family photos, sometimes with a newborn and sometimes with a grown child. Neangok Chair’s little girls are dressed up in gorgeous frilly party frocks with a train; Debra Keenahan is with her stunningly beautiful adult daughter; Ben Van Poppel is laughing happily with his toddler. Whether the disability is visible or not, they look just like the family photos you see on Facebook. Which is as it should be.
      The saddest ones are the missing photos, from stories by women who had their babies taken from them because of lack of support.

      Liked by 1 person

      • Sounds beautiful, and, as you say, Black Inc is doing great stuff. Return to Uluru is a beautiful book, besides its content.

        Like

        • They also published one of my favourite history books, The Art of Time Travel by Tom Griffiths. We are so lucky that we have these indies that between them cover all the kinds of reading we like to do.

          Like

          • And that’s one I still have here on my TBR.

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            • #TemptingYou It’s a book that you can read a bit at a time.

              Liked by 1 person

              • Cheeky, Lisa. I have a few of those – like Reading like a writer – but I’ll take that on board.

                Liked by 1 person

  2. I remember the stigma of couples where the young man had paralysis from an accident (the spinal unit was full of young men) but he and his wife wanted a child. Back in the 1980s when I was involved in this, many people disapproved and felt it was selfish of them both to want a child when one parent was significantly disabled. I can imagine the women met with mixed support when they attended pregnancy/birth classes with their disabled partner. I am so glad things have improved since then, but I have no doubt such attitudes still exist in the community.

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    • Yes, I think so too. And yet, if they only thought back to that moment of joy and wonder when their own children were born, they surely wouldn’t want to deny ecstasy that to others.
      I can understand why well-meaning people might initially think that the non-disabled partner has enough to deal with, but that is a decision for the couple to make, not others, and it is definitely not something that outsiders should have the temerity to express to adults who have already thought it through and decided that it’s what they want.

      Like

  3. Wow, this sounds like a really valuable book, Lisa, and I confess I probably haven’t appreciated the difficulties disabled parents face as much as I should. I hope attitudes *have* moved on a bit, although I suspect possibly not as much as we might hope in our rather problematic 21st century. I shall definitely try to be more aware and an ally now.

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    • Well, that is the value of this series. I mean, no matter how much we want to or how hard we try, there’s always more to learn and we can’t all have the experiences that would help us to understand.

      Liked by 1 person

  4. My initial reaction is regrettably antediluvian, but Milly and I are discussing this over Mother’s Day lunch, and she has me considering all the shades of grey.

    Love the quote from Andrew Bolt’s worst nightmare (having to read him might be mine)

    Like

    • To be fair, I’ve only ever seen Bolt’s articles in the newspapers that I find in cafés, and I don’t read them.
      But the sad truth is that one doesn’t need to read them to knowhow awful they are.

      Like

  5. This sounds excellent. I’ve got the Aboriginal one but hadn’t grasped it was part of a series.

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