My brother is the reason I don't want kids even though he's my favourite human

When people ask me why I don’t want to become a parent, I always have a handful of answers ready to give – except none are ever the entire truth.

Environmental impact. Cost-of-living crisis. Fear of labour. Desire to keep my pelvic floor muscles intact.

Rarely, if ever, do I mention the main reason: my profoundly disabled brother, Kevin.

Shortly after he was born in 2000, he was diagnosed with a severe form of cerebral palsy, a motor condition that inhibits coordination and movement. He also has epilepsy and optic nerve hypoplasia, which affects his vision. 

Kevin may be 22 now, but his behaviour is more in line with a six-year-old’s. He’s prone to tantrums, especially if his routine is disrupted or his demands are not instantly met. 

He has soothers, including a rubber duck, and has the gait of a toddler taking their first steps ‒ imbalanced and staggered, with the constant threat of accident.

He uses a wheelchair, struggles with speech and has difficulty with cognitive reasoning. He needs assistance with bathing, dressing, going to the toilet and eating.

I love my little brother more than anybody else in the world.

He never fails to make me laugh with his unfiltered comments, always impresses me with his determination to complete tasks, and, perhaps most importantly, provides me with an unlimited supply of cuddles. 

He is, in my biased opinion, the best human to walk, and in some cases, roll, on this planet.

And yet, he is also the main reason I don’t want to have a child ‒ a realisation I came to years ago, but until my late twenties, have never felt comfortable saying aloud.

‘Outing’ yourself as a child-free woman in society is awkward enough without ‘blaming’ the decision on your disabled sibling ‒ which, at best, gets you sympathetic nods, and at worst, makes people think you’re an ableist bigot.

I have felt bad for having these thoughts

But not only am I burnt out from being a carer – meaning I have no energy left for anyone else in my life – I’ve been worn out by witnessing the way our society treats people with disabilities, and how harsh our world is.

Still, it’s not exactly acceptable to say that caring for my brother has destroyed any desire in me to have dependents, even if they spring from my uterus, but it’s the truth.

Little research has been done on how having a disabled sibling can affect one’s decision to be or not be a parent, but a recent study in this field struck a chord. 

In their research on how having a sibling with extra needs can impact children, academics at the Hebrew University of Jerusalem and the University of Cambridge found that children who grew up with a disabled twin may be more empathetic than those who didn’t.

You would think, therefore, that having a disabled sibling would be a blueprint for building maternal instincts. And for many, it likely is. 

Growing up on the frontline of disability can teach one a huge amount, with the experience often demanding a level of patience and understanding that most children won’t develop until later in life.

I’m sure many people with siblings – regardless of where they sit on the spectrum of disability – will actively want kids because of their experience, and they will be fantastic parents – but for me, helping to care for my brother has had the opposite effect. 

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My empathetic glands have been swollen beyond repair, leaving me without the energy to nurture a pet rabbit, let alone another person.

And beneath this aversion to caretaking lies an even more unspeakable truth ‒ I’m terrified of having a profoundly disabled child, too.

Nightmares of eternal parenting flash through my mind any time I think of pregnancy and birth, but remain unsaid, for fear I’d be labelled ‘ableist’ if I were to voice them out loud.

Cerebral palsy isn’t common, but it also isn’t predictable. It affects one in every 400 newborns in the UK, with about 30,000 children living with the condition across England, Wales, Scotland, and Northern Ireland today. It can be mild, but it can also be all-consuming, like it is in Kevin’s case.

Cerebral palsy typically presents in the first two to three years of the baby’s life, and while the cause is often unknown, it’s linked to damage to the developing brain before, during, or shortly after birth.

My mum was handed a ‘healthy’ baby and discharged from the hospital without any cause for concern. It wasn’t until she noticed, around eight weeks later, that my brother’s limbs were flopping and his eyes were slightly crossed.

After a panicked GP appointment and a referral to one of the country’s top ophthalmologists, she was informed that her son was not just visually impaired, but likely brain damaged, too.

At five years old, this would become my first memory of pregnancy and childbirth – and it has never left me.

Despite the fact that, ‘there are over half a million siblings of disabled children and young people in the UK’, according to Sibs UK, hardly anyone has opened up about how the experience can affect one’s decision to have kids.

Most of the discussion unfolds on internet forums instead.

‘I have a younger autistic sibling and growing up with him at times was a f**king nightmare… I don’t want to go through that hell again, especially as a parent,’ one individual wrote on Reddit’s Childfree forum four months ago. 

This post sparked an outpouring of dialogue, with many others sharing their own fears of having a child with a complex disability.

The author later commented that they ‘feel bad’ for having these thoughts, admitting that they’re afraid of being accused of ableism or offending people with autism.

I, too, have felt bad for having these thoughts, especially as I am hyperaware of the discrimination against people with disabilities in society.

Hardly anyone has opened up about how the experience of having a disabled sibling can affect one’s decision to have kids

As I’ve become increasingly exposed to parenting circles in my late twenties, I’ve come to realise just how much my brother’s severe cerebral palsy has shaped my perspective on starting a family.

When expectant parents talk about babyproofing their home, I wonder if they’ve ever considered they could be doing it for a lifetime. I wonder how they’d feel about having a revolving door of carers on their porch.

I wonder if they’ve ever imagined that their child could be permanently isolated, that neighbouring children could mock them, and that the parents of these children will brush it off as ‘kids just being kids.’

I wonder if they have ever thought that their vision of ‘having it all’ could not just be changed, but completely erased, if their child was to be born with a severe disability.

If I end up having to be my brother’s permanent carer one day, I will take to it with all the love and dedication he deserves. 

But choosing to be child-free because I don’t want this life, for myself or anybody else, doesn’t make me ableist. 

It’s not bigotry to not want to bring a child into the world because you are emotionally drained from looking after someone else, nor is it selfish to refuse to be a full-time carer for the rest of your days.

Calling this position ‘ableist’ disregards the gravity of what it’s like to grow up with a brother or sister who requires constant care, and only makes it harder for people to speak honestly about the experience.

It also detracts from the real culprit of ableism ‒ our unequal society. Until the stigma of disability has been eradicated, the world will remain a hostile place for people like my brother.

Efforts are fortunately being made to improve infrastructure and services for those with disabilities in the UK, but slowly. Even then, there’s no denying that disability can take a devastating toll on individuals and their families. 

It is this flawed system, rather than the very people who cared for their siblings under its reign, that warrant our scrutiny and accusations of ableism. 

In the meantime, I will continue to wear my child-free badge without shame ‒ and next time someone asks for the time on my biological clock, I might just tell them its batteries have long expired.

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