We live in a society where people feel the need to be defined, which often determines the roles they feel they have to play. People want to fit in and to do this it helps if you are seen as “normal”.
What defines me is the fact that I am a wife and a mother. I also have a disability. I was born with cerebral palsy (CP). The problem with CP is that it is a broad condition. Without going into too much detail, I am a right hemiplegia, which means the right side of my body is affected – I have muscle spasticity in my arm and leg and no peripheral vision, hearing or sensation on this side.
I overcame a lot of the challenges caused by my CP to qualify as a primary school teacher. I got married and I had two beautiful sons. Then, in 2008, I had a stroke. I now struggle to speak and I’m touch, taste and smell sensitive. I need a wheelchair if we go out of the house as I can’t walk far. All of these medical mishaps make being viewed as “normal” relatively impossible.
In many ways, my stroke forced me to re-evaluate myself and my disability. Until then, because my CP wasn’t blatantly obvious, I had been able to fit in by making adjustments to the way I did things. Now I can’t compensate and this has had an effect on how people interact with me. I have had to learn to accept that the list of things I can’t do is longer than before, and I have had to work more on finding the things I can do.
One thing that I have always believed, and my conviction is now even stronger, is that I will not allow my disability to define me. I live with it, but I don’t suffer from it. I don’t want sympathy – I want to be recognised for what I can do rather than be judged for what I can’t. This approach is common for all the people with disabilities who I have engaed with.
My boys are now teenagers and this has, once again, meant that I need to redefine my role. I’m trying to teach them that there’s no challenge they can’t overcome, but they must stay true to themselves. I’m also trying to show them that we are judged by our actions and our legacy is determined by the impact that we have on other people. The fact that they are older and don’t need as much attention from me has allowed me to focus on other pursuits. I run a CP awareness campaign called Aware Bears. I do reading enrichment with a group of children at the Carel du Toit Centre for hearing impaired children. I run a storytime programme with a group of preschoolers at Project Playground in Langa and Gugulethu, and I have written and recorded (before my stroke) audio stories for children called Never-ending Stories.
And I have discovered blogging. Blogging allows me the time to clear my head and get my thoughts in order before communicating with the world. One of the effects of a stroke is that your speech can be muddled and you can struggle to find the right words. In our fast-paced world, most people are not patient and either finish your sentence for you or just switch off. My blog allows me to get my point across, to have my say and to contribute. On my blog I have been able to address issues that are important to me, from being a stay-at-home mom to communication challenges and even learning to age gracefully.
So what does all of this say about the roles we play? I just finished having coffee with a group of moms who have special needs children. They have reminded me of just how many people face incredible odds on a daily basis; of how quickly our lives can change and how our expectations and realities are seldom in sync. I look at our society and I wonder how we can integrate people with disabilities (and their families) into our communities and not allow them to feel isolated and ostracised.
If there is one thing I have learnt it is that we must be careful when we define ourselves, as the roles we play don’t remain static. “Normal” is in the eye of the beholder, and it changes all the time. We need to find the balance of playing the role while remaining true to ourselves.
Xanet is an award-winning journalist and Living and Loving’s digital editor. She has won numerous awards for her health and wellness articles and was a finalist for the Discovery Journalist of the Year in 2009 and again in 2011 for the Discovery Best Health Consumer Reporting and Feature Writing category. She is responsible for our online presence across social media channels and makes sure our moms have fresh and interesting articles to read every day.