My disability does not define my worth.

by Veronica on June 7, 2014

in My body is broken.

Yesterday, standing out in the paddock with the two youngest children, I waited for the lovely Helen from ABC radio to come up and interview me about my disability, reproductive choices and quality of life.

At the same time, I kicked a ball to Evelyn and tried not to panic.

Something I thought was nobody’s business but ours has turned into a Thing, and frankly, I have a headache over it.

You see, what you are saying when you say we should not have had a third baby, is that people like me shouldn’t exist. That I am somehow worth less as a person because of my genetics. When you judge my children based on a small string of genetic code and find them wanting, you are telling them they are worth no more than their genetics.

How is that not eugenics? This idea of some people having less value to a society because of their genetic fitness.

It’s a slippery slope, and yes, I know, your situation is different. But that’s the thing – your situation may require different choices to mine. Your situation may be entirely different.

Different people decide different things about having children all the time.

This is not the pain olympics. Your situation does not define mine, nor mine yours.

Asking me to say I was irresponsible for bringing children in to this world is asking me to regret my choices, my children. I can’t do that. I will never do that.

It also implies that had we known about Ehlers Danlos Syndrome, my mother should have aborted me, and so on, back through our family line. Cleansed the world of a genetic fault before any one could ever “suffer”.

But I’m not “suffering”. I don’t find my existence to be one of suffering. I don’t sit here, waiting for my life to be done, wishing my mother had aborted me.

When everyone else sees me as merely the sum of my disability, a collection of “issues” that they would “hate to live with” and “I can’t even imagine how you live”, I am busy getting on with my life.

This is the body I was born in. I don’t spend time regretting my inability to run marathons. Instead I do all the things that make me happy. And maybe I am lucky – my interests align well with my abilities.

I spend time with my family. We play video games and laugh uproariously. We read books. I write things (lots of things). I make soap.

We’re happy.

Let me repeat that.

I am so happy with my life and the path I am on.

I don’t spend all day dwelling on how my joints work. Do you? Do you spend all day noticing how your ankles move? Or how your hair colour affects the way people speak to you? Or how you breathe? Or how your eye movements control what you see?

Of course you don’t.

We don’t spend every moment of every day aware of our bodies and the things we can and cannot do.

Why would you think I sit here in a pit of angst worrying about how I can’t weightlift? Or run?


I’d been loathe to write about this again, because hear this: What I decide to do with my uterus is none of your business. Not even a little bit. Not an ounce. You don’t get a say. If I decided to go and have another five babies, you still wouldn’t get a say.

My disability does not define my worth, nor does it define the worth of my family.

Remember that the next time you feel inclined to say something to me.

Comments are moderated on this post and all others from here on in. It’s not something I ever wanted to do, preferring instead to foster a group of commenters who were adult and able to agree or disagree with me without resorting to vitriol and assholery.

That’s changed now and I am controlling the conversation. If you feel the need to comment like a dick and it doesn’t add to the conversation, I will delete you, but not before mocking you on social media.

You can disagree with me. You can comment with an entirely different perspective and situation. You can talk about your own situation or your reaction to my situation all you like.

But you can’t attack me or my family personally, you can’t attack choices other commenters make and you can’t spread your vitriol around like manure on the garden.


Michele June 7, 2014 at 10:49 am

You and I started out butting heads because of a blog I kept once upon a time. I used it as a place to vent about the problems I saw with mommy bloggers mostly oversharing and sometimes the clear disregard for how their children and family members would deal with their inability to keep some personal things to themselves. I let my comments on that blog go a little haywire, I say this lightly of course. I closed it down because it was poisonous to me and it drained me. I closed in the end because I wanted to concentrate on my mother who was very ill, and as I’ve shared I lost her in September. I still think certain Mom bloggers are nuts, and most of them will stick their thumbs at me and say to screw off. What I learned from that whole debacle was I cannot control or even in the slightest get people to see the error of their ways. I’m pretty liberal about a lot of things in life, but when it comes to parenting, and family I have very high standards and a very solid set of ethics that I’m pretty unwavering about.

I know you love your children very much, that’s pretty evident from your words. Would I choose to have a child knowing I had a genetic issue that could be handed down? You know I can’t answer that because all the things I found out about myself was after I had my son. But I might have taken the chance hoping it skipped him, and I’m praying that all my issues and all of my mother’s kidney and liver issues skip him as well. I honestly have a greater issue with someone who has severe mental illness and then chooses to procreate. If you have bouts of manic depression, or schizophrenia I would suggest not having children. That would be a horrible childhood to grow up in, even on medication the children of people with severe mental issues carry the scars of their parents illness.

In the end there is always going to be someone whom will deem them better than you. There are going to be people that take issue with you having children and those who think you have every right. Love your children, love your self and Screw those who disagree.

Veronica June 7, 2014 at 2:35 pm

Ha. I don’t miss that to be honest! You raised some very valid points, but your commenters – whoa.

There are lots of different things we can pass on to our kids. I think honestly we’re all doing the best we can with what we’ve got available to us.


Rach June 7, 2014 at 11:04 am

V, I am so sorry that you have had to defend your life and your choices in this way, just because you write on the internet and the culture of the internet is that people feel it’s reasonable to outline their unsolicited, ill-informed, emotionally loaded objections to your life.

Your reproductive choices are nobody else’s business. It’s awful that you have had to debate and explain them to strangers. I’m sure there have been some wounded and painful private moments for you through this episode.

I just wanted to point out that I think you make a measurable and significant contribution to Australian culture through your writing. And you are still so young – I have little doubt that as time goes on your voice will be an important one in Australian public life.

I think you manage your disability with grace and humour and insight, and I’d say it’s likely your kids will do the same. You just keep on trucking with your bad self, sister.


Veronica June 7, 2014 at 2:36 pm

Thank you so much. You’re lovely, you know that?

You’re right about the culture of the Internet too. It feels like bloggers are pretend celebrities with little followings of people who feel they’ve got a right to know everything. But I doubt many bloggers share everything – blog posts usually end up being slices of life, snipped and pieces. Not the whole thing.

Denise Webber June 7, 2014 at 12:42 pm

Oh my god, I just went and read the comments on your other post. I am utterly utterly horrified by the tone of some of them.

I have an acquired disability, three years ago my life was going just fine, I was coming to the end of my degree, looking forward to finding a job which would utilise my skills. And then I got sick, very very sick, I almost died three times in the first week I was in ICU, my family got told three times to come in and say their goodbyes as they were sure I wasn’t going to make it.

I spent 9 months in hospital, I had to learn how to walk again, I have been left with several permanent disabilities, I have severe nerve damage to my legs, which means on occasions they just stop working. I can never tell when, I can no longer use stairs or anything that requires me to lift my legs more than a few centimetres.

Worse to me than this is the brain fog I now have, from I am told being on life support and copious amounts of drugs. I think I can basically kiss good bye to ever finishing my degree as I now have trouble gathering my thoughts and ideas and the whole process of writing an essay seems akin to climbing Mt Everest.

I am on the DSP but I would rather have a job, but who is going to hire me when I can’t leave my house, when I sometimes forget the names of the most simplest things, when someone asks me a question and I know the answer but it just won’t come out.

I’m trying so hard not to let this define me as a person, but when I’m told day after day that I’m a bludger, a drain on the system and that I don’t deserve to be here its hard.

I also hate how I burst into tears for no reason now.

Veronica June 7, 2014 at 2:40 pm

I think that sounds so hard. I at least was born in this quirky body, so I am used to its foibles. There’s no adjusting to a new reality for me.

And it is so hard to not let things define you, but to still aknowledge that it’s a part of you now.

I find the constant barrage of bludger/drain/undeserving to be the hardest part. To have other people only see what we can’t do, not what we can.

Sarah June 7, 2014 at 2:07 pm

I read the comments on the last blog as more concern/upset about having children you were unlikely to be able to support financially yourselves?
Knowing that they have a higher chance of needing greater than average medical care, and would be relying on the public health system?
I didn’t take it as having a go at your disability or saying they shouldn’t have been born?

Veronica June 7, 2014 at 2:33 pm

It’s interesting how things can be read differently depending on baggage/personal situation.

We’re in the process of starting a business so we can support ourselves. That was always the plan – we just thought originally it would be writing things, rather than writing things AND soap. Yay, soap.

Also too, it bears pointing out, that while people think they’re being “concerned”, it can come across as being judgemental.


Linda June 7, 2014 at 3:13 pm

Your quality of life seems ok to me, I don’t weightlift or run marathons either and I don’t believe anyone other than the parents involved can decide if they should reproduce, for me it would come down to quality of life, we are very familiar with struggle,learning differently,working twice as hard for the same outcome as peers & judgement, but not for one minute do our challenges affect our self worth , I believe our challenges make us more determined,resilient,hard working,compassionate people who often have the widest smiles & the biggest hearts and why the hell wouldn’t you want to reproduce that 🙂

Fiona June 7, 2014 at 3:16 pm


I personally struggle with the question of whether it would be “responsible” for me to have kids, partly because I don’t know how I’d stand up mentally healthily to having them and what I may pass on genetically or environmentally.


That’s about it.

BB June 7, 2014 at 5:14 pm

The comment above that people with “severe mental illness” shouldn’t be able to procreate bothers me. Who exactly gets to judge what a “severe mental illness” is and which people suffering mental illness should or shouldn’t have kids? I don’t hear people saying that anyone who drinks alcohol should not have kids. I don’t hear people saying that anyone who drives fast should not have kids. People need to realise that by saying so-and-so shouldn’t have kids for whatever reason means that *someone* is going to have to impose this arbitrary line that is going to prevent people from living the life they want to live. I have worked with children who have been removed from their parents because their parents can’t care for them in a suitable manner (the majority of them did not have a mental illness). I also deal with depression and anxiety on a personal level. Depression can be considered “severe” at times so does that mean I shouldn’t have had my children? If Person A, someone who is diagnosed with a mental illness *after* they have their children, manages to care for them suitably and is thus able to continue custody of their kids then why shouldn’t someone who has a mental illness that was diagnosed before they had their children but that is managed on the same level as Person A be able to have kids? There are plenty of people dealing with depression and anxiety who are still far better parents than other people who don’t have to deal with these issues. So who gets to decide what “severe” really is? Who gets to play god in all this? That is the problem with saying what certain people should and shouldn’t be able to do – it means someone has to impose an arbitrary delineation and that is just wrong in so many ways.

Helena Coles June 7, 2014 at 5:31 pm

Once again, Veronica, your writing makes me stop and think about my opinions. Like everything else in life, they are constantly changing, evolving and lots of GREY – never black and white as they were when I was younger. Mostly I am all for people be able to make their own decisions, especially with the big issues. The thing that stands out about your situation is that your kids are LOVED so much, and have such a great home life. What I have real issues with are the people that have kids, and more kids….. that are brought up in horrible situations where they are abused and/or neglected. It shouldn’t matter what disabilities parents have, or what gender they are, but it SHOULD matter what kind of homelife they can provide, how much love they can show, and care and respect they can pass on to their children. There are still some people who shouldn’t be allowed to reproduce!!

Kirsty June 7, 2014 at 7:16 pm

Everyone deserves to be happy and for most of us, that includes having children and sharing our love. Isn’t it better to have a life that is a little different and maybe slightly more difficult than some others lives than to not have been born at all?? I wish you and your amazing family all the happiness in the world.

Other Fiona June 7, 2014 at 9:18 pm

I have never done a Google search on ‘Eugenics’ in Australia till now. I’m astounded to learn that one of the Melbourne Uni buildings I used to sit in for lectures in is named after a prominent eugenicist – a man who tried to enact legislation for forced sterilisations. There is quite a history of formal eugenics movements in Melbourne. All very relevant really after that Daily Telegraph article.

I think some of the previous comments on your post do fit exactly to the definition of ‘eugenics’, as in a program of selecting who has the ‘worth’ to reproduce. It’s a terribly slippery slope, quite apart from the assault it imposes on the dignity of individuals and families.

Other comments though, I see not as eugenics but as economic liberalism. There is a book called ‘Filthy Lucre’ I read last year that dissects these arguments…it was a heavy read but an excellent education in economics and politics.

I’m from the NW Coast of Tas originally so I’m a bit with the ‘shades of gray’ on the economic front. I think it’s a low blow to question the veracity of someone on the DSP. But like anything, there were a minority who exploited the unemployment system and others who would not or could not improve their lot in life. That sometimes irks me as I’m on the freeway at 7:15am fighting traffic to work. But I’m trying to focus on living out my own values, rather than focussing on other peoples’ lives.

Stimey June 7, 2014 at 10:27 pm

I love you. Yes. This. All of this. Your whole person is what makes you you. You, your children, all of us–we all have intrinsic value no matter our genetic makeup. Keep on keep in’ on. You rock.

Krista Petrauskas June 8, 2014 at 7:19 am

Hear! Hear! Your disability does not define your worth. A clear and well written piece – and a very good response. I haven’t read you for a bit – I really liked how you wrote this – can never imagine or understand why people think they have the right to attack you or your rights – or your person hood , your disability or your genetics.
I always feel when I read your writings that I don’t have a right NOT to try to meet my challenges in my life – and I admire your honesty and get a lot out of reading your blog and your domestic challenges and the way you face life as fearlessly as you can – most of all I love the way you nurture and develop your children’s identities and encourage their self esteem – in healthy, in growthful ways and love.
. Even though I am a lot older than you – you have the power to inspire and your writing is insightful for both young and old – and causes food for thought – I never thought about your genetics, just thought about what you write. Everybody that has written here today is a testament to your talent, strength and power and how bereft the world would have been without your stamp on it. There should be no question about your right to live your life as you see fit – unlike a lot of others out there, – you take all your ‘responsibilities’ on board.
The only people I think should not have children are pedophiles, psychopaths, violent’ repeat offenders’, and dangerous irresponsible and abusive people who would stunt the growth of new life, the development of this life, and cause psychological rampage and irredeemable damage.
I believe in an egalitarian society – and as human beings we should be about taking care of each other and all life on this planet without the rider ‘only the perfect will prosper’ – nobody is perfect everybody has flaws. Our challenge is to grow in adversity and endeavour to do the best we can, with what we have been given, to grow and be fair minded. I have no time for eugenics I think Desiderata had it right, and so have you and the whole of your family.


Go placidly amid the noise and haste, and remember what peace there may be in silence.
As far as possible without surrender be on good terms with all persons.
Speak your truth quietly and clearly; and listen to others, even the dull and ignorant; they too have their story.
Avoid loud and aggressive persons, they are vexations to the spirit.
If you compare yourself with others, you may become vain and bitter;
for always there will be greater and lesser persons than yourself.

Enjoy your achievements as well as your plans.
Keep interested in your career, however humble; it is a real possession in the changing fortunes of time.
Exercise caution in your business affairs; for the world is full of trickery.
But let this not blind you to what virtue there is; many persons strive for high ideals;
and everywhere life is full of heroism.

Be yourself.
Especially, do not feign affection.
Neither be critical about love; for in the face of all aridity and disenchantment it is as perennial as the grass.

Take kindly the counsel of the years, gracefully surrendering the things of youth.
Nurture strength of spirit to shield you in sudden misfortune. But do not distress yourself with imaginings.
Many fears are born of fatigue and loneliness. Beyond a wholesome discipline, be gentle with yourself.

You are a child of the universe, no less than the trees and the stars;
you have a right to be here.
And whether or not it is clear to you, no doubt the universe is unfolding as it should.

Therefore be at peace with God, whatever you conceive Him to be,
and whatever your labors and aspirations, in the noisy confusion of life keep peace with your soul.
With all its sham, drudgery and broken dreams, it is still a beautiful world. Be careful. Strive to be happy.

© Max Ehrmann 1927

john malpas June 8, 2014 at 12:08 pm

Wait until you are really old (70 plus) to find out how expendible you really are.
Especially when compared with any footballer. eg try to have a cat scan.

Beth June 8, 2014 at 5:29 pm

There’s a peculiar breed of people that feel they have the right to an opinion on things that have no impact on their own lives whatsoever. They’re responsible for sexism, racism, agism, bigotry and judgement in general. Have loads more kids, Veronica, maybe we can breed them out of existence!

Alison June 9, 2014 at 3:53 pm

As soon as we start defining worth we are in trouble. Frankly, there are a lot of people who would be in trouble if we could see what went on their hearts and their heads, a lot of folk who some people would brand unfit to breed because of their cruelty, their lack of compassion, their inability to empathise or connect with other people.

Luckily for them, human beings have worth because they are human beings. End of. Would I have had a baby knowing I had a disability I might pass on? Don’t know.

And it doesn’t actually matter, does it? Since I’m not you. And, like you say, it’s your uterus not mine.

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