We’ve Got This: Parenting with a disability

This was the third session at the Advocacy Sector Conversations forum held at the Queen Victoria Women’s Centre on 14 February 2019.

Overview

There is still a societal view that people with disability shouldn’t be parents – how can you look after another person if you have complex needs of your own? As the recipient of the ABC’s 2018 Regional Storyteller Scholarship, Eliza Hull decided to use this opportunity to change misconceptions by giving parents with disability a voice through her podcast series, We’ve Got This: Parenting with a Disability’.  Eliza talks about the project and the impact it is making.

 

Links to resources mentioned in this session:

 

Audio and Transcription

MELISSA HALE, DARU COORDINATOR
Welcome back everyone.  Now I would like to introduce Eliza Hull who was the 2018 Scholarship winner of the ABC Regional Storytelling Grant, which I must also remind you the grant is open again for application.  If you are inspired by Eliza’s amazing story today, I encourage you to reply.

Eliza worked with the ABC staff in Bendigo for six months to develop stories about parents with disability.  Through this, she developed a series of podcasts called We’ve Got this Parenting with Disability.  Please welcome Eliza.

ELIZA HULL, BROADCASTER, ABC LIFE MATTERS:
Thank you so much Melissa and thank you for having me.  I’m very excited to be here, it’s a real honour.  My name is Eliza Hull and I have a physical disability, which is known as Charcot-Marie-Tooth, and it has nothing to do with my teeth.  It’s a disorder that was named after the three founding French Doctors.  It was Mr Marie, Mr Tooth and Mr Charcot.  It affects my nervous system and the communication between my brain and my limbs.

Whilst I have been disabled since I was five years old, I actually haven’t identified as having a disability until actually quite recently in the last couple of years.  If I’m completely honest for me, disability was something that I was afraid of, the word, I don’t know, the association and I guess the assumptions.  I realised that I had a lot of internal ableism going on.

Five years ago, I was pregnant with my daughter and like most parents to be I was both excited and nervous at once.  Although as a person with a physical disability, there were added complexities in the mix internally I was battling questions that were fraught with fear.  I had questions like would I be able to be a parent with a disability, would the pregnancy be too hard for me, would people judge me, could I manage, what if my daughter inherited my disability because there is a 50% chance.

I guess at times my head was a whirlwind of anxiety.  I remember being given a huge pile of parenting books by a friend.  There was all of the names What to Expect when You’re Expecting, Baby Wise, Baby Love, all the titles most parents get.  I realised there was no mums like me in these books, I realised I wasn’t represented.  In fact there were no parents with disabilities represented in these books.

When I turned on the TV, again there were no parents with disabilities.  I couldn’t even think of any movie that represented disabled parents and yet in Australia there’s roughly 18% of our households that has a parent with a disability.  I wondered, where were we? Where are we?

My theory is that parents with disabilities are not represented in the media because there is still a societal view that people with a disability shouldn’t be parents.  If we have needs of our own and require others to look after us then how could we possibly look after another?  There’s this idea that we can’t parent and therefore potentially shouldn’t.

In the end, becoming a mother enabled me to not only face my own internal fears and ableism but also understand where these discriminatory beliefs have come from.  I’m now a proud disabled woman.  I’m a proud disabled parent.  I accept who I am and love that I can offer my daughter a life where diversity in all of its forms are celebrated.

I came to realise for so long I had been fed a lie.  I came to believe that disability meant that you were somehow less.  Through continue lack of under representation of disabled people and disabled parents I felt alone in my decision to parent.

I remember going and seeing my neurologist and telling him, I was going to have a child and it was very heartbreaking because he just shook his head and that said a million words.  He also believed that yeah the pregnancy would be too hard and yes I did fall over being pregnant out on the road but I got up luckily because I felt I was strong enough that I wanted to do it so I did do it and it was okay.

After searching far and wide, I finally found an overseas TV show that shared the stories of people with disabilities but the person narrating the story didn’t have a disability.  This meant that it was inaccurate, it was sensationalised and it reinforced stereotypes that I had been taught all my life.  The main argument in the show was that people with disabilities would find it far too challenging to be a parent.  Suddenly they were stating that parents therefore shouldn’t become parents and shouldn’t have children.

I realised after watching this show that these beliefs were everywhere.  They’d been reinforced throughout my life.  Looking at portrayals in fairy tales through the centuries people with disabilities are often not seen as having the ability to be responsible for other people.  I decided to start a project that set out to change this.  I wanted to represent parents with disabilities in a way that accurately represented their lives.  I didn’t want to sensationalise it or make it inspirational or brave I wanted to normalise it because people with disabilities are parenting, they’re in relationships, they have desires, dreams, hopes and needs and not only are they having children they are successfully creating families that are thriving.

This project idea was brewing away in my head days and nights, sleepless nights that I couldn’t stop thinking about this project.  I started researching disabled parents.  Instagram become my new best friend #disabledparents and I just was constantly searching and finding new parents.  I even decided to start going out and doing interviews with parents.

Luckily, at the moment I saw that the ABC was offering the chance to develop a project.  I applied for the Regional Storyteller Scholarship and I was the recipient for 2018, which is a scholarship for a person with a disability living in a regional or rural location in Australia.  Right now, they’re offering two more scholarships for this year and they’ve been offered funding I think for at least the next three years for two people each year to be a scholarship recipient.

During my time at the ABC, I was funded to travel around Australia interviewing a varied range of parents with disabilities, which eventuated into an eight part audio series with Radio National Life Matters and feature articles and videos for ABC Life.  The reaction has been overwhelming with promotional interviews happening on the BBC in the UK, Channel 9 Today Show, the 7.30 Report, ABC News Breakfast.

I think this comes down to the fact that people are ready for these stories and I’m really proud we’ve begun a wider conversation about what it means to be a parent with a disability in Australia.  I believe that disabled people need to be given the chance to tell their own stories.  We need more representation of disabled parents in the media in order to breakdown societal misconceptions.

That’s Debra who’s a mother with dwarfism and me on the Today Show.  I have to tell you I was absolutely so nervous that I actually felt I had an out of body experience when I was sitting on that couch, I was that nervous.  When I look back I actually realise I did okay.

Some of society’s misconceptions about parenting with a disability I found through these interviews with parents with disabilities include the belief that people with disabilities cannot be competent parents.  That our children will be looking after us, that it’s rarely in the best interest of a child to be raised by parents with an intellectual disability, which eventuates in the removal of children.

That’s a misconception that some of society believes.  That disabled people can’t parent and therefore shouldn’t parent.  That because we have complex needs of our own how can we provide care for another or that it would be too challenging to parent or that a child will miss out.

All of these misconceptions meant that I found the most common barriers that each parent faced happen out within the community.  They came from an assumption from strangers that our children will be looking after us or that disability is inherently negative or horrible.

For instance Emma Bennison who I interviewed for the series is based in Hobart and her partner Vaughn are both blind.  Emma told me a story about her taking her three-year-old out into a shop and the shop assistant said to her it’s so lovely that you’ve got your little boy to look after you.  Just about 10 minutes ago, her little boy had thrown the biggest tantrum as three year olds do and as she stated, “in what universe would a three year old be looking after me?”

Day to day life parenting of a person who is blind was very unlike any other family for Emma.  The challenges happen when her and her family stepped out within the community.  It was the discrimination, the assumptions and the misconceptions that she faced daily that she could not get used to.  In fact, for Emma the actual parenting within the home was a lot easier than she had imagined.

Video Played:

Emma Bennison – The actual mechanics of looking after a baby as a blind person were very straightforward.  None of the things I thought were going to be difficult actually were.  I had this sort of obsession that I thought bathing might be difficult well it really wasn’t because you do most of that stuff by touch anyway.  Everybody I’ve spoken to just about seemed to think that changing nappies as a blind person would be incredibly difficult but again you do most of it by touch.  I know lots of sighted parents change nappies in the dark and do it completely by touch.

That’s Emma Bennison there talking.

Other barriers there that disabled parents face are the systematic barriers for parents with intellectual disabilities through Child Protection.  I interviewed a mother with intellectual disability Amanda White who constantly lived in fear that her two twin daughters would be taken away from her.

She felt she was always being judged.  It was never based on how Amanda was doing at that given time it was always this pre-emptive constant fear that Child Protection instilled in her that at any given day Amanda could lose her children.

Amanda did have the support of her Godmother who was there if Amanda needed any sort of help.  This included, if say ,Amanda needed some respite on the weekends as any parent would need with twin baby girls.  That would be hard work.

Video Played:

Amanda White – I think the girls know that I’ve got a mild to moderate intellectual disability.  It’s more in learning than it is in parenting.  Parents with intellectual disabilities can be parents.  I’ve looked after my kids since they were babies till they’re 14 years old.

Eliza Hull – What do you feel for the parents that do have intellectual disabilities and they do lose their children, what do you feel for them?

Amanda White – They should be given a fair go, they should be given a chance to live their life with their kids and not be judged.

That was Amanda White speaking there.  Amanda now has two teenage girls who are excelling at school and they’re family is thriving.  I shared dinner with them one night and absolutely fell in love with the girls they’re beautiful.

For one other mother who I interviewed Susan Arthur who is here today this story wasn’t the case.  Unfortunately, Susan lost her child and the child’s paternal grandma is looking after her daughter.  This obviously has caused a huge amount of heartache for Susan and she believes this could’ve been avoid if she had of been given the support and education to keep her child.

For me personally I believe that this is a real problem.  When we’re taking children away because of disability, it’s doing great harm to children and to parents and to the social fabric of the Australian community.  Parents with disabilities should have the same right as any other parent.  They should be provided support and education to keep their children.

Off course, there are some exceptions where it’s not safe for children to stay with their parents but when the decision is based purely on disability where the parent hasn’t been offered an adequate amount of support to keep their child like Susan, I feel it is a true injustice.

Other parents with intellectual disabilities are not even given a chance.  There are children that are being taken straight away in hospitals and they’re also being given documents that they are presented with to sign that their children are being removed without it being clear and the people with intellectual disabilities don’t understand what they’re signing.  I feel this is by far one of the biggest barriers for parents with disabilities in Australia.

Another mother that I interviewed Jen Blythe who is a single mother and who is deaf faced discrimination through her child’s school.  She asked the school to send her a text or an email instead of phoning her but instead they just kept ringing her ex-husband because they found communicating with Jen just too hard.

She also had to spend weeks advocating for an interpreter to be at her birth.  The hospital said that they could provide one when she was at the pushing stage but not before.  Jen advocated for herself for many weeks when she was tired and heavily pregnant.  Luckily, her persistence did work but I feel this is not something that you should need to fight for and this only happened four years ago.

It seems the medical system has a long way to go.  For queer parent Jax Jacki Brown who I interviewed as part of the series this was her experience.

Video Played:

Jax Jacki Brown – We had to enter the IVF industry, which is full on.  That was really hard as a disabled person to enter a medical industry again when I’ve had a lot of my childhood feeling really disempowered by the medical profession to then give over my body to a medical space where disability was presumed to be an inherently negative terrible thing.

We used my eggs in Ann’s womb so we did reciprocal IVF.  I remember we went around to one of the nurses and sat down; she talked us through some of the costs that would be involved and what they could offer.  She said for an extra fee we can do genetic testing on you and the embryos and I said, “no actually we’ve decided personally that we want to opt out of that we’re just going to accept whatever child we might be lucky enough to have.”  She leaned across the table put her hand on Ann’s hand looked her in the eye and said, “you know this is your choice though,” as though I wasn’t even there in that moment.

That’s Jax Jacki Brown.

Each of the parents I interviewed had ways they adapted their lives.  For instance two parents Emma and Vaughn Bennison who are both blind put bells on their children’s shoes so they could hear them when they were walking around their house.  Single mother Jen Blythe who is deaf used a baby cry alarm, which alerted her in the night with a flashing light, which she said, was constantly a rude shock.  Every night she said she didn’t get used to that.  Kylie Myers a mother with dwarfism cut the change tables legs so it was the right height for her.

Every parent has their own unique way of adapting their lives.

Another mother I interviewed for the series was Mandy McCracken who is based in Kilmore.  She’s an example of why representation is so vital.  Mandy McCracken had a blood infection five years ago, that ended up given her sepsis.  To save her life she had both of her hands and feet amputated and through acquiring a disability later in life, Mandy has found her role as a mother has shifted.  What she’s learnt is that representation is vital in teaching children about disability.  This is a video of Mandy.

Video Played:

Mandy McCracken – Probably the most interesting, most difficult part of being a parent was the new disability probably also with the existing disability is how your kids deal with it in the playground.    One day I had my youngest Tess came home and somebody said, “your mum’s a pirate or a robot” because of my robotic hands and she just burst into tears.  I said to her, “well I am I’ve got robotic hands and I’ve got pirate legs.”

We turned around and made a joke of it.  I said no other kid in the classroom is going to have a half pirate half robot mum so hey you’re ahead of the game there.  I think the key is to give your kids the chance to share the emotion that they’re feeling with you but then work out the solution together.

For me I confronted it really head-on.  I actually went straight into the classroom and I said to the teacher right we’re going to do show and tell, I’m coming around tomorrow and I want to sit in front of all the kids in Grade 3 and they can ask me any question.  We sat down with the kids and my daughter Tess pulled my arms off.  I had legs she passed around the room and all the kids could ask any question they wanted.

All of the sudden I went from being the scary mum to Mandy that has some fantastic party tricks.  The kids love it.  Rip the band-aid off and have that hard conversation.  Open yourself up to letting people ask those questions.

That’s Mandy McCracken.  Mandy as she said then became a person again and not someone the kids should fear.  Through these open and honest conversations and by letting the schoolchildren pass around her prosthetic arms and legs they get to understand what it truly means to be a parent with a disability.

I’d also like to share the experience of a disabled woman Chanelle McKenna and I interviewed her as part of the series.  When Chanelle was 11 years old she loved reading and listening to Top 40 pop music.  Since she was a baby, she has had cerebral palsy.  When she grew up, she wanted to be a solicitor.  She enjoyed school and had always been very academic but but suddenly and dramatically, her life forever was affected.

Her mother agreed in unison with medical professionals and school staff that she should be involuntarily sterilised.  She was taken without her consent to a hospital and a forced hysterectomy was performed.  Chanelle was only 11 years old and her choice to parent was forever stolen. Chanelle emerged from the operation confused, scared and in immense pain.  She had no idea why she was unexpectedly in hospital.  It would take weeks before she could sit properly.  The enormity of this has caused Chanelle lifelong emotional pain and physical trauma.

Chanelle is now 46 and is studying a Health Science Bachelor Degree.  Chanelle should’ve been able to be a mother if she wanted to be.  How is it possible that her choice was stolen from her as a child and how are we as an Australian nation still allowing the forced sterilisation of children?

Executive Director of Women with Disabilities Australia, Carolyn Frohmader, I don’t know if I’m pronouncing that right, has had over 20 years’ experience advocating for women and girls with disabilities.  She states that the practices of forced sterilisation of women and girls with disability continue to occur in Australia and these practices remain legal and sanctioned by Australian Governments.

When I asked her why she states that it’s the supposed burden of care that menstrual and contraceptive management places on families and carers and the widely held societal attitudes that disabled women cannot be effective parents.  Women with disabilities are typically seen as childlike or a sexual or over sexed, dependant, incompetent, passive and genderless and therefore considered inadequate for the nurturing reproductive roles considered appropriate for women.  That’s what Carolyn stated.

As Carolyn states, for more than 15 years the United Nations treaty monitoring bodies have categorically confirmed that forced sterilisation of children is a clear breach of some of the most fundamental human rights.  However, women and girls with disabilities in Australia have failed to be afforded these provisions in International Human Rights Law.  Instead, they remain subject to widespread discrimination, systematic prejudice and ablest attitudes that devalue and limit their rights.

I’d like you to hear Chanelle.

Video Played:

Chanelle McKenna – When I woke up I was in excruciating pain and I didn’t understand what was going on with my body.  It would take weeks before I could properly sit in my wheelchair again.  The Doctor was supposed to put dissolvable stitches in me however, he didn’t.  When the nurse removed the stitches after two weeks, I felt like I was in a river of piranhas biting at my skin just for the fun of it.  I couldn’t understand what was going on, why did I have to have this operation.

Throughout that episode, we had an actress voice Chanelle and we also used her natural voice and she uses a voice speech device so we used all of those three.

Chanelle McKenna shouldn’t have been denied the right to parent, that’s my belief.  I feel disability is not a burden or something that needs to be fixed.  She’s a human being so I feel like her desire to be a mother that should’ve been lived.  It will never fade for her.  Her right to have a baby should’ve been undeniable.

I felt it was important to include Chanelle’s story within the series because of disability her right to parent was stolen.   Her story ended up being the most read article of the whole series.

I just want to share the impact that I feel this series had made.  I believe that the series is being used to change the barriers that disabled parents face.  Women with Disabilities Victoria are now using the series to inform their sexual reproductive health in workplace development.  Organisations are using it to educate their staff.  Disabled parents are now sending the series to their mothers group so that it can do the explaining for them, which I absolutely love.

The most important step is changing people’s perceptions.  I’ll never forget the first email that I got just from the general public through my personal website when someone had listened to the second episode with Susan Arthur and Amanda White and someone said, “you’ve changed my mind, I now have a different belief.”

That reiterated to me the importance of sharing these stories and I feel really grateful and honoured that these people did share these stories with the general public.  I owe it all to them.  The series is representing people with disabilities and hopefully making them feel less alone in their decision to be a parent.

I would just like to end on the video.

Video played:

Eliza Hull – I have a disability known as Charcot-Marie-Tooth which is a neurologic condition.  It’s a physical disability and it’s affected by my nervous system not sending the messages to my brain.

When you have the complexity of being a parent with a disability, it can make it harder but I truly believe that one of the hardest things is not home life and not being a parent with a disability in the home, it’s actually, what happens outside the home.

I had an idea that I wanted to tell the stories of parents with disabilities and this year I was the recipient of a Regional Scholarship with the ABC, which has enabled me to travel around Australia to tell these stories.  In all of the stacks of parenting books there were no mums like me.  That’s what I set out to change in this series.

I went to Hobart to interview Emma and Vaughn Bennison who are parents that are blind.  They have two children that are sighted.  They spoke about when the two children were toddlers and how they added bells to their shoes so they knew where they were.

Emma Bennison – The concerns people used to level at us were how are you going to make sure the baby is clean, how are you going to make sure their nappy is changed appropriately etc.  That’s just very easy to do by feel.  It quickly became clear to me that that wasn’t an issue.

Vaughn Bennison – One of the things I was particularly focused on was how are we going to find ways and places of changing babies when we were out and about in public because I certainly didn’t want people to be staring at us and judging us what have you.  I also wanted to make sure that my baby was appropriately taken care of.

Emma Bennison – At times the teachers have assumed that they need to read to our kids because we won’t be able to and it’s not till I pull out the braille book with the pictures or whatever it is that they’ve gone okay that’s not an issue.  It’s just lack of exposure really and ignorance born of fear that I think we are up against.

Eliza Hull – I met Carol Taylor who lives in Queensland.  I felt really honoured when I went to her house because she’s such an open and warm and friendly person.

Carol Taylor – Rob and I were newlyweds and we had just returned from a weekend away at the Blue Mountains and on the way home early in the morning we hit black ice.  The car rolled and on the second roll the roof caved in and hit me on the back of the neck and instantly severed, my spinal cord and it left me a quadriplegic paralysed from the chest down and with paralysed hands.  In that split second, my life was forever changed.

Eliza Hull – She desperately wanted to have children and after 15 IVF attempts her and her husband ended up deciding to give up on the idea of having children and then naturally they fell pregnant with their son.

Interviewee:  If I had another nurse on another occasion when I was having some blood taken, more or less suggest to me that it was a little bit selfish of me to have, to pursue this and isn’t it hard on him and isn’t it hard on your husband, almost made me feel a little bit guilty.  In those early years, I wasn’t strong enough to stand up and say what I would say now.

Interviewee:  Even though most people wouldn’t think that, she would be able to play with me, being in a wheelchair she used her tray as an area for me to play with my toys when I was little.  I have never really known any other life without a disabled mum.  I find it completely normal and I know how to deal with things with mum, when there’s something wrong.  I just find it completely normal.

Eliza Hull – For a very long time I was confused what to call this series, I had lots of ideas.  Funnily enough, I asked Vaughn what he would say to people that may potentially question his ability to parent and he straight off the bat said that We’ve Got This.  It really hit home it really resonated with me.  It felt like it was the whole journey of what the whole series was about that in fact we have totally got this.

I just realised how Australian I sound in that with straight off the bat.  I want to finish by saying that I believe we as parents with disabilities are successfully parenting.  And representing this in part is breaking down societal barriers and misconceptions.  Through more representation of people with disabilities, I feel we as community are breaking down some of these stereotypes and beliefs.

Now more than ever there is talk about diversity, about sharing our stories varied as they are and representation I believe is vital in creating an inclusive society.  Making this series, I learnt that through having a disability parents give a beautiful and unique experience to their children.  They grow up in a home where difference is embraced not feared.

What would I like for the future – I would like more representation of parents with disabilities on our TV screens, on our radio, in our movies.  More conversations.  I feel like the more we talk about our experiences the better.  Representation is vital in creating this society.  I want us to be visible.  I want disabled young people to see disabled parents on stage and on their TVs and think if I want that, I can do that.

Disability isn’t a burden it’s not something that needs to be fixed.  It’s what makes this world so wonderful.  I feel that we are diverse and that’s where the beauty does lie.  To any person with a disability about to dive into the unknown world of parenting I hope that this series will, I guess, guide you in knowing that, like these parents with disabilities, that We Have Got This.

I would also like to state that, to be completely honest, I was a little bit afraid of creating this series because I do know that it excludes some people with disabilities.  That was a definite fear for me.  I just want to state that I do know that.  I see those people and feel that.  That’s me, thank you so much for listening.

Also, I would like to say if you do have a disability and are regionally or rurally located the scholarship is open for anybody that has an idea, any sort of idea they want to create with the ABC so please do apply.

MELISSA HALE:
Congratulations Eliza that’s an amazing series.  I think it’s fantastic and like you said when you send that email to say the person had changed their mind about what they previously believed that’s what it’s all about.  It’s about changing people’s minds, changing people’s attitudes.  Really well done, congratulations.

[APPLAUSE]

Does anyone have any comments or questions for Eliza?

COMMENT:
Hi, me and my husband here, we’ve got two teenage boys.  I’m very proud.  It wasn’t easy but we had them as kids but they’ve managed to – we’ve both got disabilities and they’ve seemed to really adapt.  We don’t have a car it was a main problem because we couldn’t take them out anywhere.  That was the most frustrating thing like the normal families.  Being out in public was hard but now they’re grown up and one’s working at McDonalds and one is doing a Community Services Degree.

ELIZA HULL:
Do you mind if I connect with you after?

COMMENT:
Yeah.

MELISSA HALE:
Questions or comments?

COMMENT:
Maybe I’m talking a bit too much today and you will be sick of my comments.  I’m a father of three children and my wife is also Deaf so the both of us are profoundly Deaf.  My experience was also that my parents are Deaf.  I’m a child of Deaf parents, I’m also a person who is Deaf, and I have three children that are hearing or can hear.  They’ve had that experience of their grandparents and their parents all being deaf.

One person you spoke about the problem not being within the home it’s actually being outside of the home that is the issue.  Everything at home is fine you’ve got everything in place but when you walk out into the community that’s where you feel that pressure of trying to be, well this is how we felt as Deaf parents, we had to try and gain that perception that we were doing better than those counterparts around us who could hear.

People would always judge us on maybe our children were being quite cheeky and so forth but we took that as a huge pressure on us that we had to try and be the same as everybody else.  Instead of having other people’s opinions projected on our children, we needed to have an attitude change from the wider community it wasn’t that we needed to change at all.

Really, where it lies is parents are diverse; parents have various ways of raising their own children.  My own children have their own way of seeing the world compared to children who’ve had parents that could hear.  The impact isn’t necessarily about my deafness or about other disabilities it’s about the gains that we have that all my children, both their parents are Deaf and that’s a gain that they have.  For example, learning Auslan and English all of my children have got the advantage.  In that respect, it is definitely a gain.  I can definitely say that it’s not necessarily a disability.

ELIZA HULL:
Totally agree, thank you for sharing your story.

MELISSA HALE:
Anyone?

[NO QUESTIONS]

Thank you very much.

ELIZA HULL:
Thank you, thanks again for having me and listening.  I appreciate it.

Author:
DARU

Date published:
Thu 14th Feb, 2019