Growing up was tough. Not in the way people usually mean it when they say that though. I had a roof over my head, a hot dinner on the table every night and everything I needed or wanted. My parents worked full-time, I went to a selective high school and did pretty well academically and socially.
It was tough because I had a sister. A sister that happened to have an intellectual disability.
What does that mean? Well basically, it means she will never grow up (Peter-Pan style). Her mental capacity is that of a 2 year old and will remain so for the rest of her life. She can feed herself, walk by herself and follow simple instructions but that’s as far as her autonomy goes. Everything else (including her toileting, showering & day to day activities) must be tended to by someone else. When she’s not in care during the day, she’s being looked after by my tireless parents who come home from their full-time jobs each and every day to look after her every need.
And yet, she is the glue that keeps our family together. As her only sibling, I was made aware from a very young age that she would one day be my full responsibility. To have that on your shoulders from such a tender age forces you to grow up and be determined to achieve a lot in life. My sister has been my inspiration to succeed and has helped me gain insights into the world and people that I could not have gleaned otherwise.
Her EQ is incredible – she can gauge how personable a person is from the moment she meets them for the first time. She either likes them or doesn’t and in almost all cases, as I’ve ended up discovering, her assessments have been spot on. How does she display this? With warm, happy and hospitable people – she will instantly connect with them and sit & converse with them in her own way. With cold people, she’ll either refuse to enter their house or stay as far away as possible from them. How she gained this ability we will never know.
What amazes me most about her is that she’s always happy. Always. As someone with Angelman syndrome, her happy disposition is a prominent feature of the condition and one which endears her to everyone she meets. This has taught me an invaluable lesson in life about human connection – it’s fostered through hearts not words.
To experience what this is like – help out a person with a disability. Hang out and do an activity together (painting, walking, reading a book). You don’t appreciate what you have until you lose it – just observe the perseverance of a person with a disability and see how little effort you actually put into your life.