The first time I felt like a burden I was only four years old.

Samantha LenkeMetro ColumnistPublished on November 26, 2023 at 1:00 PM | Updated on November 27, 2023 at 12:50 PM
Sam Lenke sits in a wheelchair and looks straight into the camera. When I was a kid, I carried the weight of the world on my shoulders (Photo: Jeff Spicer/Getty Images)

Childhood photos of you with embarrassing hairstyles and questionable outfits.

From kids flashing cheesy smiles while posing with family and friends to kids dressed up in costumes and blowing out candles on birthday cakes.

That’s what’s been dominating my social media feeds since the start of Disability History Month (16 November to 16 December). In line with this year’s theme, “Disability, Children and Young People”, there has been a flurry of posts by deaf, disabled and neurodiverse people.

At first glance, these photos just seem to show “normal” kids doing kid things and enjoying their childhood, but dig a little below the surface and each photo tells a story.

Many of the captions that accompany the photos speak to the heartbreaking reality of growing up with a disability in a world that isn’t made for kids like us — a world that makes us feel like we’re a burden or something that needs to be fixed.

This made me realise that I had always felt shame about my disability and that this had been projected onto me my whole life by the non-disabled world.

In a world of privilege, I feel inferior.

I had a mostly happy childhood despite having a rare genetic condition called osteogenesis imperfecta, which means I’m small in stature and have always used a wheelchair. My body doesn’t produce type 1 collagen, which can lead to a number of health complications, including fatigue, hearing loss, weak veins and respiratory problems.

Despite these challenges, I had a roof over my head, a dog called Tessa, a best friend (who’s still my buddy 30 years later!), and my parents did their best to raise me in a stable environment.

And yet, as a child, I carried the weight of the world on my shoulders, especially the shame I felt about my disability and need for care.

For example, I had multiple broken bones due to a lack of collagen, and my bowels were not strong enough so I struggled to go to the toilet, so I had to regularly take suppositories and sit on the toilet in excruciating pain. It was pure torture.

I remember struggling with constipation from the age of 3. I quickly came to associate going to the bathroom with fear and pain. I would sit there rocking back and forth, feeling like I was about to burst with stool.

My mom would ask me, “Samantha, do you want to go to the bathroom?” I would vigorously shake my head and say, “No,” but the trauma of my past prevented me from actually going to the bathroom.

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One particular memory that remains deeply etched in my mind is from when I was about four years old. I attended a local child development center, which I guess was the equivalent of kindergarten, several times a week.

It was obvious to everyone that this was my first experience of being independent and away from my parents’ care.

Once, I had an accident at the child development center. One of the caregivers noticed that I had wet myself and rushed me to the bathroom. As she removed my diaper, she scolded me, saying, “Why didn’t you tell anyone you wanted to go to the bathroom?”

Her words were not gentle or kind, and even the way she wiped me down was, in my mind’s eye, arousing. I was lying on my back looking at the ceiling, and the roof tiles and grey interior still come to mind.

At that moment, I felt embarrassed and burdened. I came to understand that I should have told them sooner, that this was my fault. This feeling has remained in my heart ever since.

This is one of many stories I could share with you: a story of how a privileged world made me feel inferior, how my needs and disabilities were used as weapons to make me feel utterly ashamed of beautiful parts of my identity.

Samantha Lenke as a child with her Labrador This feeling has stayed with me ever since. (Photo: Samantha Lenke)

Another time was when I was in elementary school and had a bright red motorized wheelchair with a fluffy brown seat cover. It was a magical Lamborghini of a wheelchair. I kept it at school during the summer holidays because I had a separate manual wheelchair that I used at home.

But then one day, someone broke into my school and vandalized my wheelchair, spray painted it, and threw excrement on it. I must have been around seven or eight years old. It left me feeling completely vulnerable and increased shame about my disability.

Now, as an adult in a position to work on my mental health through weekly therapy sessions, I am slowly learning to love myself. I am trying to let go of the internalized ableism that so deeply impacted my self-esteem in such insidious ways and that still permeates almost everything I do and every relationship I form.

Shame and disability are so commonly associated, yet so rarely discussed, because it is so internalized that individuals feel as though they have brought it on themselves.

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