Monthly Archives: April 2015

Disability affects the whole family


I have permission from my family to share this vulnerably as it may help other families who are facing similar trials. I will post a series of articles from my family members that will eventually be stored in the content of this site under family support. I also intend to increase public awareness of how disability affects families and the joy and hope that can be found amidst the struggles.

Any disability, Impairment or even age related degenerative problems, can lead to selfishness if personal boundaries are not in place. I share our story to show that trying to hide a problem, just leads to more complications. There is no shame in having new needs or in getting help! Embracing realty, as painful as it might be, is worth the freedom that it can bring.

A family Phenomenon

I, an imperfect wife, am married to a wonderful, not-quite-perfect man and we have two human children…. but we all love each other. As any normal family, we have had to adjust to each one’s character and needs. Having a disability does complicate things as it is like having another family member who requires attention and has demands of its own.

Positive aspects

Not being able to drive, in a middle class South African context, meant that we did a lot of things together that other families would do as individuals. We have done much travelling and shopping together over the years and have many happy memories and many songs made up in the car.

Trips to school with two children in one pram, was an occasion for telling stories and discussing all the things that they spotted on the way. They learned how to describe the environment from a young age. I walked a lot with the children and I think we made more use of local parks and greenbelts than most other families in our community. Walking to the shop inevitably meant that we needed refreshments before our return journey. At least these ‘spontaneous picnics’ were cheaper and more fun than filling the petrol tank! It gave us time to fill emotional tanks.

Untangling dependency

Some of my coping mechanisms did put pressure on our family and, in hindsight; I wish I had done some things a bit differently. When our first child was born and became active and verbal, I used to use him to see for me. For example, if I was going to a birthday party and I knew a friend would be there, I would ask my son, “Can you see Aunty Sue?” “Can you spot anyone you know?” It was like reading ‘where is Wally’, but the live version. I thought I was being really clever to cope like this, but when our son was about 16 I saw that he had carried the responsibility of my blindness. He felt guilty just being a happy go lucky child and so was very serious. (As if our firstborns need to take any more responsibility than they usually do?).  Once we had spoken through it and shed many tears and prayers, he began to catch up on his childhood ….. And still is. He will always have a compassion for people who struggle but will be wary to take on too much responsibility for them.

In contrast, we just presumed that our second child knew that I couldn’t see her. She is now 21 and in reflection we realised that she only registered that I couldn’t see her when she was about 9. She was a very quiet child and her emotions showed on her face (which I couldn’t see) and her feelings didn’t come out of her mouth (like her brothers) unless she was very angry or very happy. . My heart aches for the many moments of need that I missed out on comforting and nurturing. We have adjusted our relationship and I am so grateful for her compassion, gentleness and care.

Rewiring our relationships

Since I have embraced my blindness, instead of pretending that I can see normally, my family have been able to relax knowing that I will ask if I need help. Previously who previously they took a lot of the weight of the stress in my life, most of which was caused by me putting expectations on myself to live fully in a sighted world. Now I purposefully do not ask then to do things that I can handle myself –even if it takes me longer to do. I am more aware that they have their own things to do. Now that I have sought help and support, I am more in charge of my own problems and they are freer to be themselves.

…not by sight

It is a bonus to have lost my central vision gradually, as I know where things should be and many movements and behaviours are done, not because I can see, but because I know what should be there. I suppose you can call it faith. …. Being sure of what you hope for and confident of what you cannot see.

In the gym there are hairdryers on special holders between the mirrors where everyone beautifies themselves and puts on their ‘faces’ etc. One day I walked up to the dresser and plonked my gym bag in front of a mirror-not that I can see my face in it, but it makes me feel like everyone else. I reached my hand out to get the hair dryer, but it wasn’t there. I waved my hand around trying to find it and then I laughed and slid my things along to the next mirror. If someone had been watching it must have looked pretty weird …as if I was waving my hand trying to do a magic trick and make the hairdryer appear (or maybe I was practicing to be a one hand conductor!).

VIP WaveIt is only when things are not where they should be that I notice that I can’t see it. Usually it can be embarrassing, but then I choose: either I laugh at how funny I must look or I blush and never go back to the gym again. Guess what I chose?

I now call this the VIP Wave (Visually Impaired Person )