My Sister and Me

What would you do if you knew your child would have a disability?

My younger sister was born different. By all appearances she was a happy little baby, but she didn’t feed well and all of her milestones, such as walking and speaking, were delayed. As she grew, she developed in her own way, much differently to me. By age five, we knew that she was intellectually disabled, but in twenty-three years she’s never received a diagnosis.

Last year, Mum took my sister to an experienced geneticist. She took one look at her and pointed out several features which were characteristic of a chromosome abnormality: her small ears, her heavy brow, her gait and her club foot. To discover the source of the abnormality, they had to test the blood of my sister and our parents. If it wasn’t present in the genetic code of my parents, then it was most likely that my sister’s disability was the result of a spontaneous evolution. If it was present in one of my parents, then it was possible that it could’ve passed to me—and any of my future children.

When Mum told me this, I was stunned. It wasn’t easy being raised side-by-side with my sister; she required a lot of attention. I resented her for years, though I know logically that none of it was her fault. But what if I had a child with the same disability as my sister? Could I handle it? Could I be strong like my mother?

Though my sister’s situation is unique, mine is not. Pregnant women—often those over forty—take an amniocentesis to test their foetus for abnormalities, of which the most common is Down syndrome. But what is the point of this test? Is Down syndrome a reason to terminate a pregnancy? Is intellectual disability a reason to refrain from childbirth or procreation?

The rise of genetic engineering, particularly in China, shows that no matter how a child is born, some people will want them to be different. Why have black hair when you can be blonde? Why have brown eyes when you can have blue or green? Why have a daughter when you can have a son? Why have a disabled child when you can have a neuro-typical child with normal problems?

My Mum has experience in special needs education schools, and I have taught in mainstream high schools. While the education in both sectors is different, the students are very similar. Behavioural challenges within schools are relatively universal: aggression, lack of interest, sexual frustration, calling out, restlessness and constant desire for food. There are difficulties raising a child no matter who they are.

So, I thought about my sister. She’s quiet, messy, she drools, she needs help with dressing, eating and most basic functions. But she’s never rude, she’s not sexually active, she’s mentally healthy and she’s sociable. I compare how difficult it must have been raising me; I have depression and anxiety, I craved attention and threw tantrums, I was rude, I screamed, and I slammed doors, I dated older men and cut myself and couldn’t budget to save my life.

Between my sister and me, who would’ve been easier to raise?

It took three months for the test results to come back. Three months for me to consider what I would do if I was a carrier of a gene that could make my children intellectually disabled. Much like many of my generation, whether or not to even have children is still a question mark on my future. But I believe I would be lucky to have a daughter like my sister.

The results showed that my parents do not have the same AUTS2 chromosome mutation as my sister, so it could not be passed to me or my children. I felt neither relief nor sadness, just the first surety of my future—no matter who my child is, I will love and support them as my parents have for my sister and me.

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Disclaimer: I had originally hoped to get this one published in a more polished form, but it was not to be!

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