I was only four when I first felt like a burden

I have a constant feeling of shame towards my disability – and it’s been projected on me by the non-disabled world.

I was only four when I first felt like a burden
Sam Renke in a wheelchair looking directly into the camera
I carried the weight of the world on my shoulders as a child (Picture: Jeff Spicer/Getty Images)

Childhood photos of cringe-worthy haircuts and questionable outfits.

From kids with their cheesy smiles while posing with family and friends, to blowing out candles on their birthday cake in fancy dress.

That’s what’s dominated my social media feeds recently since the start of Disability History Month (16 November to 16 December), when a flurry of deaf, disabled and neurodivergent people posted in keeping with this year’s theme: Disability, Children and Youth.

To the casual onlooker, these photos seem like they’re just ‘normal’ children doing what kids do and enjoying their childhood. But scratch below the surface and each picture has a story.

Many of the blurbs accompanying the photos tell the heart-breaking reality of growing up with a disability in a world that was not made for kids like us. It’s a world that makes us feel like a burden or something to be fixed.

It made me realise that there’s been a constant feeling of shame I’ve felt towards my disability – and it’s been projected on me throughout my life by the non-disabled world.

The enabled and privileged world has made me feel lesser-than

For the most part, I had a happy childhood as someone with osteogenesis imperfecta, which is a rare genetic condition that means I’m of petite stature so I use a wheelchair full-time. I don’t produce type-one collagen in my body, which can cause many health complications including fatigue, hearing loss, weak veins, and respiratory issues.

Despite these challenges, I had a roof over my head, a beloved pet dog named Tessa, a best friend (who is still my partner-in-crime 30 years on!) and parents who did their best to give me a stable upbringing.

Nevertheless, I carried the weight of the world on my shoulders as a child – especially when it comes to feeling shame around my disability and care needs.

For example, alongside multiple bone fractures due to a lack of collagen, I would struggle going to the toilet because my bowels were not strong enough. So I’d have to take suppositories regularly and sit on the potty in agony. It was torture.

I still remember the pain of being constipated from as early as three years old. Very quickly, I associated going to the bathroom with fear and pain. I’d sit there rocking from side-to-side, bursting.

My mum would often ask: ‘Samantha, do you need to go potty?’ I’d vigorously shake my head in answering no, but the past trauma stopped me from actually going to the toilet.

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A specific memory that seems to be almost ingrained in my mind is when I was around four years old. At the time, I would go to a local child development centre a few times a week – I guess my equivalent of pre-school.

By all accounts, it was my first experience of independence away from the care of my parents.

On one occasion, I had an accident while at the child development centre. One of the caretakers noticed I’d soiled myself and – with haste – whisked me off to the bathroom. As she was taking off my diaper, she berated me: ‘Why didn’t you tell anyone you needed to go to the toilet?’

Her words were not soft or kind and even the motion in which she cleaned me was – in my mind’s eye – agitated. I was lying on my back looking at the ceiling and I can still see the roof tiles and the grey interior in my mind to this day.

At that moment, I felt ashamed and like a burden. I came to understand that this was my fault because I should have told them sooner. Since then, these feelings have always been at the front of my mind.

This is one of many stories I could share with you, where the enabled and privileged world has made me feel lesser-than. Where my needs and impairments have been weaponised against me and I’ve felt utter shame about a beautiful part of my identity.

Samantha Renke as a child with a labrador dog
Since then, these feelings have always been at the front of my mind (Picture: Samantha Renke)

Another one is when I was in primary school and I used to use a bright red power chair with a fluffy brown seat cover – it was the magical Lamborghini of all wheelchairs. It would stay at school during summer holidays because I had a separate manual one to use at home.

But on one occasion, the school got broken into and the wheelchair was vandalised – including being spray-painted and defecated on. I must have been around seven or eight years old, but I felt completely vulnerable and the shame of my disability spiralled.

Now, as an adult who is in a position to work on my mental well-being with weekly therapy sessions, I’m slowly learning to love myself. I’m trying to let go of this internalised ableism that has greatly influenced my self-worth in such an insidious way that it seeps out in almost everything I do and every relationship I form – even now.

Shame and disability is so commonly connected, yet rarely discussed because it becomes so internalised that the individual feels as though they are the ones who have brought it on themselves.

Now, aged 37, I can say I feel pride in my disability identity and wouldn’t change a thing about me (well, maybe slightly bigger boobs!).

So what needs to change? Well, first of all, we need to stop playing songs like Coldplay’s Fix You during events like Children In Need! Disabled kids don’t need to be fixed – they’re perfect just the way they are.

On top of that, we need to educate caregivers on their own unconscious biases associated with disability, so disabled people can receive support they need in a sensitive enivornment.

So let’s all embrace this year’s Disability History Month theme and work together to ensure disabled children don’t have to deal with that shame, but instead feel only love, protection and pride in their individuality.

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