Parenting with disability: Sam Drummond shares his journey
Parenting with a disability wasn't in Sam's plans. But sometimes, plans change and great things happen.
Lawyer and disability advocate Sam Drummond shares his experience of growing up disabled and the journey to becoming a father.
It takes me six months to get to know my new neighbourhood. Not just the street names or where to get the best coffee, but each laneway, every shortcut, all the unmaintained bluestone paths. Which houses are home to hoarders, which businesses ignore ‘no junk mail’ signs and who mows their lawns on a Wednesday. This is the life of a parent whose child will only fall asleep in the pram. Come rain or slight drizzle, if I spot a yawn, a rub of the eyes or the pull of an ear, I whisk Young Me into the pram. Then the race is on—will she drift off to sleep or will my hips or knees give out first?
Watching her fall asleep is one of the great honours of parenthood so far. She stares at me intently with her indigo eyes. Her eyelids shut once, twice, then again for a final time—and she’s asleep. That’s on a good day. The alternative is that her eyes stay wide with wonder as we pass trees, dogs, birds. These endless walks inevitably result in another sleepless night. She will sleep like the proverbial baby she is. But my form of dwarfism means I will toss and turn from one sore hip to the other, trying to find the right angle for my swollen knee. I stubbornly refuse painkillers because I’ve had worse.
Whether she falls asleep in the pram or not, there’s always one thing at the back of my mind: I have a 50 per cent chance of passing this disability of mine on to her.
Being a parent was never really on the cards.
I hear this so often from other parents with a disability. Whether a disability is genetic, acquired or both. Every disabled person gets subtle and not-so-subtle hints that they should not procreate.
The message that I am somehow ‘lesser’ because of my disability has been pounded into me for as long as I can remember.
In kindergarten, like in every kinder around the country, the teacher marked our heights against the wall. They then ranked them from top to bottom. I was always last.
In the Grade 1 playground, another student told me their parents had warned them not to go near me because they might “catch” my shortness. Anyone who has a physical difference knows that comments from young kids can be blunt and are not unusual. As an adult, I welcome questions and comments from children as an opportunity to make a positive impression. This particular interaction might have been one of a dozen schoolyard conversations about my appearance that week. It would not have stuck with me if it had not shown that adults—their parents—had the ignorance to hold such a view and then the bigotry to pass it on to their information-absorbing child.
Despite a love of sport, I was often sidelined from high school PE. I was plonked next to my classmate Kevin. Kevin’s blood didn’t clot, which explains why he couldn’t participate in contact sport. It doesn’t explain why no non-contact alternatives were offered. Other students were asked to push their physical limits while our limitations were fixed, defined by others. Kevin and I got the message that our own bodies were not something that fit in a teaching plan. They were certainly not something to be proud of.
Kevin died one school holidays in Year 8. Three of his classmates went to his funeral. I am ashamed to say I was not one of them.
Dating with Disability.
And when it comes to sex, dating and reproduction for people with dwarfism, the message is not just that tall is better, but that it is tall or nothing.
Growing up, there was not a single media representation of a person like me as a healthy sexual being. Short-statured people, and disabled people more generally, have been forced to straddle competing stereotypes: either desexualised or fetishised. At one end, the child-like non-sexuality of the Oompa Loompas, the Seven Dwarfs or the Wizard of Oz’s Munchkins. At the other, hyper-sexualised Mini-Me from Austin Powers.
There is no doubt in my mind that these representations are at least in part responsible for the kind of life-shaping interactions that pulverise your confidence more than any schoolyard taunt. Like the drunk man at a music festival urinating on you “because you’re at the right height”. Or a crush telling you that you should be with “your own kind” instead of her.
Through the way in which we are portrayed, the messages society sends to a young person with a disability are clear: you are different, you should be sidelined. If you are to succeed, it’s not going to be with the rest of us.
If the messages don’t get through to you by the time you’re considering having kids, the ‘genetic counselling’ offered by health practitioners will do the trick. Even the name is a giveaway. You go to a counsellor when you have a problem (say, drinking), not when everything is hunky dory.
Getting to know each other beyond just dates
For reasons I cannot explain, my partner expressed so much interest in me early in our relationship, she wanted to accompany me to my regular specialist medical check-up. The doctor confirmed the maths to both of us without us even asking. If we had children, there would be a one-in-two chance that he would have a new patient. At that point in our lives, neither of us was interested in children. So it was to my relief that my partner smiled politely and declined an offer of genetic counselling.
I left that appointment knowing that the two of us had something special. Here was someone who was genuinely interested in everything about me. This interest was not just in the parts of my life that I enjoyed but also the ones I resented—like these inane medical appointments.
We were happy simply discovering each other. Sitting together with a cup of tea, a pack of cards and a warm blanket. I was the luckiest person in the world and didn’t want anything to change. I certainly didn’t want to do something as drastic as mention the possibility of children. That would be like being dealt a jack and an ace in blackjack, then saying to the dealer, “Hit me.”
Being a parent was never really on the cards. Until it was.
The once in a lifetime trip.
We had been on the trip of a lifetime, indulging every one of our senses in Malaysia. In Sumatra, we saw orangutans and turtles. In Sri Lanka, we got close to elephants and blue whales, and we lazed on pristine beaches in Cambodia. We even meeting the Sultan of Brunei on his Sunday morning bike ride. But it was a chance walk to a lighthouse in Penang that made me re-evaluate my priorities.
The local tourism website described the walk thus:
The pathway up the hill from Monkey Beach starts off steep, but is nice and wide with steps, before narrowing into just a small narrow jungle track as you near the top. This is not a difficult trek and should take you 30 minutes to an hour depending on your level of fitness.
For me, fitness was not an issue. I had recently swum a marathon and had never been fitter. But while the tropical heat soaked us with sweat on the ascent, every step down from 227 metres above sea level to the beach jolted through my right knee like a spade hitting concrete. As my leg began to shake, my partner and I would embrace on each step and place our foreheads together, the way elephants do to show their love. She would then support my weight and lower me down to the next step. By the time we got to the bottom, after many more hours than the website had estimated, the damage had been done.
Pushing forward despite the pain.
The pain I endured in the months that followed shaped our trip. It would have been unbearable for my partner to watch. I had agency—I could focus on the pain and trick my brain into thinking these signals were harmless messages being sent from my leg. All my partner could do was be there with me and offer painkillers.
Each day, we would wake in a foreign bed and promise each other to take it easy. Then inevitably I would insist on walking through thick jungle or over the next hill. All the while, I knew that this stubborn determination would end in agony.
People with disabilities and chronic illness know this sort of pain well. It makes you re-evaluate basic principles. And if you get out the end of it, you never approach life the same way again.
When I told people it made me realise my own mortality, I was often met with blank stares that said, “You didn’t realise that already?” But this realisation was more than the obvious. It was the difference between a vague awareness that one day you are going to die and the complete acceptance of that fact. For me, this acceptance brought with it a sense of peace with the world around me and an urgency to make the most of the time I had left.
I arrived back in Australia with crutches and a renewed sense of purpose. The cards I had been dealt had changed and it was time to take a risk.
I decided that I should initiate ‘The Talk’.
It turned out that we both thought the other didn’t want kids. Each of us had been silent in the face of unquestioned assumptions. What about the teasing? The discrimination at school and work? The surgeries? The unending pain? How would I go lifting a child into a car seat or onto a change table? What if they were able-bodied and could outrun me?
We realised all these questions had been bogged down in the underlying assumptions placed on us by society.
The activist Stella Young, who we were both fortunate to be able to call a friend, had tattooed on her arm: you get proud by practicing.
Over dinners, trips away and midnight debriefs, my partner and I had regularly discussed the benefits that disability offers to our world. Our society falls into the trap of thinking the problem lies with the person with a disability when all the while the problem is a society that fails to fully accept and make adjustments for people with disabilities.
Shifting our view.
We live in a world that values sympathy for people with disabilities and encourages us to donate to hospitals so they can cure disability. Meanwhile, people with disabilities are left behind, because those things that would make life liveable—a translator, a piece of software, a ramp—are not given priority.
A world that embraces disability and empowers people with disability to live life as they choose is a world that is closer to seeing all of us reach our potential.
By focusing on these questions about whether society would accept another person with a disability, we were not practising disability pride.
We were accepting the view of an ableist world that sees disability as a burden.
We were denying the beauty that diversity of experiences brings our society.
For me, the decision to have a child was not in spite of disability. In no small part, it was because of it.
Our journey begins.
The journey of parenthood started by finding out that we were pregnant on the morning of a family funeral—a secret reminder between the two of us of the fragile cycle of life. It involved an ultrasound in which the radiographer, on learning about our kid’s flip-of-a-coin chance of inheriting my disability, turned to my partner and uttered the words, “I’m sorry.”
My partner knows more than anyone that my disability makes me who I am and would not change a thing, so she replied: “Don’t be sorry, we’ve actually thought about this—we don’t think it’s a bad thing!”
Our daughter arrived in a world brimming with possibility.
When I saw her squidgy face, I saw a person who could achieve anything, go anywhere, be anyone. Perhaps the process of ageing is simply realising the limits of what you can achieve, where you can go and who you can be.
The day she arrived, I experienced the full range of emotions that parenthood brings: absolute joy, exhaustion, pride, worry, protectiveness, love, and an emotion for which I do not know the word but which involves looking at your offspring and seeing yourself look back.
And then there was grief.
This last one is not something that is often spoken about, but there is so much to grieve—most notably the loss of your old life and the loss of future possibilities. I had expected this. It was a healthy part of letting go.
In her first breath my daughter caught whiffs of the bushfire smoke that had drifted from not too far east of us in Victoria. It circled the globe and spread back into every corner of our home from the west. In her first week, I grieved for the loss of being able to rely on a safe climate.
But there was also an unexpected kind of grief central to my disability. You see, our parenthood journey has involved a state of purgatory. If Young Me has inherited my disability, she won’t start showing clear signs of it until she’s about eighteen months old.
Questioning the unknown.
I was born within what the medical profession calls ‘the normal range of height’, as was my daughter. This knowledge has brought with it a state of limbo in which I have grieved the possibilities that will be lost either way if she is able-bodied or if she is disabled.
If she does not have a disability, I have grieved for the part of her life that will miss out on the wonderful perspective and experiences that disability can bring.
If she does have a disability, I have grieved for the part of her life that will be defined by society’s prejudice and expectations.
This is the dual burden of a genetic disability.
Either way, I have learnt that there is grief in parenting a child with a disability.
Those words jump out at me like a snake startled by a bushwalker. My pre-parenthood self would hate this admission. I’ve listened to non-disabled parents talk about the sadness they felt when their child was diagnosed with a disability and dismissed them as arrogant or selfish.
But as I walk these endless backstreets, trying to get Young Me to sleep, I acknowledge that this grief is real. And as my knee buckles from the walking, I find that it’s not just the prejudice she will face if she has a disability that causes me grief, but also the physical pain that potentially awaits her.
This is my moment of great doubt—can I have this grief and still be disability proud? It is all I can think about as I push the pram into the driveway, pick her up and walk straight to her room.
“I’ve had enough,” I call out to my partner, who is working from home in the next room. “Something has to give.”
I put Young Me into the cot, look her straight in the eye and explain that we are about to learn a new way to go to sleep during the day. She cries. And cries. And cries. I pick her up and close my eyes, bowing my head towards hers. She quietens. To my surprise, I feel her forehead against mine, just like elephants do to show their love.
And then it clicks.
Before having a child, I thought that this journey was the ultimate act of disability pride. I was right, but for the wrong reasons. I didn’t achieve pride just by having a child. Pride is something I have learnt through the love of this incredible being. She is completely present and does not judge. When she looks into my eyes, she shows absolute devotion. She has reinforced the idea that you cannot love others without loving yourself too.
At one year old, she has inherited just about everything. She has my hair, my eyes, my love of books, my habit of continuing to eat as long as food keeps appearing on my plate. We still do not have confirmation of whether she has inherited my disability. But if it comes, it will not change a thing between us.
We will press our foreheads together like elephants and everything will be okay.
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