The Differently-abled and Our Siblings

Chrizette and I at St.Patrick's Cathedral in Dublin

It's a memory, one of many featuring my youngest sister Chrizette and as far as our childhood goes it is the most vivid memory I have of her... of us. In this memory, we are on a stairwell in Adelaide's museum (Adelaide being a small town in South Africa's Eastern Cape region). I am about twelve at the time, so Chrizette must have been ten years old. I am seated in front of my sister on the very first step, my back to her chest. Then as the shocked museum curator looked on she starts pulling me up that long and winding staircase...step, by step.

A few moments before that same curator had informed my sister that I had to leave 'his' museum because my wheels were dirting the floors. "Besides I don't know what she'd want here as most of the best things to see are upstairs..."

Which is how I ended up with my butt on the stairs and being pulled up them.

My sister is a feisty one, she takes after our mom that way ;-)

I was two when Chrizette was born, I had already lived about two years longer than the doctors thought I would (they were surprised that I made it past two weeks). The doctors painted a grim prognosis, according to them I'd never be able to feed myself - or do much of anything really, I'd wear a nappy all my life and if I made it past five, I'd essentially be a big baby.

Then came Chrizette, my excitement knew no bounds. When I started attending a school for pupils with special needs, at age three, I talked non-stop about 'my' baby at home. Chrizette's mere presence had a massive impact on me and my development.

When she stopped wearing diapers, I demanded big girl pants too and so learned to control my bladder. Seeing her eat without assistance inspired me to do the same, and as we grew up this pattern would continue.

My sister is smart, really smart, the type of person who can literally study for ten minutes and get straight A's. Studying was harder for me, but having Chrizette's example inspired me to work hard, focus and maintain at least a B average. I am so thankful to have her in my life, to remind me to keep working and never, ever quit.

In 2013 my sister and her husband Paul, along with a great many others, played a huge part in making my dream of seeing Ireland come true. She left her husband and young daughter Carla at home to tour Ireland with me for nine days, while also acting as my carer. She endured the stress of driving around Ireland with me as our GPS, which was fondly dubbed 'Fiona' frequently lost its 'mind' recalculating our routes.

We fight, disagree and often see the world very differently, but we also laugh and love and our bond as sisters are stronger than ever today. I know we are both indebted to our parents, who made the wise decision to raise us, as far as possible, as equals. Though I sometimes needed extra attention, I was never given 'special' treatment as such. This approach was the wisest thing our parents could have done.

Years ago I read a quote to the effect of: "I don't know who disability is hardest on, the disabled child or their able-bodied sibling..."

This quote by the sibling of a differently-abled person, always stuck in the back of my head and I often wondered whether Chrizette held any such resentments. I never had the guts to ask her until I started writing this blog.

My goal with this blog is, to be honest about CP and in particular my experience of it, this then must also include the honest views of those closest to me. What follows below is Chrizete's view as a sibling of someone who is differently-abled, in her own words, using my real name:

 The other day my sister, Mercia, asked me when it was that I first realized that she was disabled. I could not give her an answer. For as far back as I remember she was always part of my fondest memories. The first time I jumped into a swimming pool, Mercia was in the water waiting for me. The first memory I have of swimming in the ocean, my father held me in one arm and Mercia in the other. The first time I rode a bike, Mercia was beside me on her pedal car. Together we sat in the garden, listening for the sound of fairies laughing. We also fought like normal siblings do. Mercia never used her wheelchair as an excuse to be treated differently.

When Mercia was in boarding school I couldn’t wait to hear all the news she had to share over weekends. My life seemed boring compared to the stories she told me. Our parents did their best to give us the same experiences and opportunities, and because of this I never really saw Mercia as disabled. To me she was as normal as anybody around me, she just used a wheelchair to move around instead of legs. I would get extremely annoyed if people treated her like a child or talked down to her, knowing that she is actually intellectually superior to that person.

Growing up with a disabled sibling taught me to view differently-abled people in the same way as I would any other person. The only difference is that they have to work harder to “prove” themselves and to achieve things that we so easily take for granted. To be honest, we all live with disabilities, some are just easier to spot than others.

Mercia is by far the most brilliant and creative person I know, and I am blessed to be able to call her my sister. Growing up with her only enriched my life and expanded my views. Today it is a privilege to be able to have a glimpse into her rich, vibrant inner world through the stories she writes.

I love you too, sis and you still inspire me every day.

Regards

Freeda Moon

Ps. I can't recall whether we ever made it all the way up that flight of stairs, but I do know the curator never tried to keep me out of the museum again!

NEXT WEEK: What my parents got right -  Parenting the Differently-abled