51st Edition Changing Perceptions November 2014 In this issue of your newsletter Reunion School building update Diary of a Cerebral Palsied Twenty something Picnic in the valley I’m a quadriplegic, not an inspiration P O Box 10213 Ashwood 3605 Telephone: +27 (0)31 700 3956 Facsimile: +27 (0)866 153 913 Email: [email protected]Website: www.kzncerebralpalsy.org.za Our Association is a registered Non-Profit (002-154 NPO) and Public Benefit Organisation (PBO 930000042) with Section 18A Tax Exemption status. When the mother of a four year old girl with Cerebral Palsy wrote in to the Big Favour for help, Damon Beard of East Coast Radio contacted us to find out if we could possibly assist. Our Director, Ina Borstlap didn't hesitate. Little Tayla needs a standing frame to help her develop strength in her legs. These frames must be individually made to meet the specific requirements of the child. Ina and Centre Manager, Paula van Eeden, immediately confirmed with Damon that we would get involved in providing a custom built standing frame for Tayla. But it was kept secret from the family in order to be a BIG surprise on Damon’s show. And it didn’t end there! Tayla also needed a hearing aid and was a little short of the total amount to secure the purchase. Within a minute Ina made a few calls and this money was successfully secured. Being part of this heart-warming story was a fantastic experience. But we were only able to help because wonderful supporters like you care about children with disabilities. Thank you Damon and your Big Favour team for helping Tayla’s dream come true. It was an absolute pleasure to join forces with you to ensure that this little girl will have every opportunity to develop her full potential.
Our Association is a registered Non-Profit (002-154 NPO) and Public Benefit Organisation (PBO 930000042) with Section 18A Tax Exemption status.
When the mother of a four year old girl with Cerebral Palsy wrote in to the Big Favour for help, Damon Beard of East Coast Radio contacted us to find out if we could possibly assist. Our Director, Ina Borstlap didn't hesitate. Little Tayla needs a standing frame to help her develop strength in her legs. These frames must be individually made to meet the specific requirements of the child. Ina and Centre Manager, Paula van Eeden, immediately confirmed with Damon that we would get involved in providing a custom built standing frame for Tayla. But it was kept secret from the family in order to be a BIG surprise on
Damon’s show. And it didn’t end there! Tayla also needed a hearing aid and was a little short of the total amount to secure the purchase. Within a minute Ina made a few calls and this
money was successfully secured. Being part of this heart-warming story was a fantastic experience. But we were only able to help because wonderful supporters like you care about children with disabilities. Thank you Damon and your Big Favour team for helping Tayla’s dream come true. It was an absolute pleasure to join forces with you to ensure that this little girl will have every opportunity to develop her full potential.
Page 2
Phase 3 of our building project at Reunion School is nearing it’s completion. The senior learners are eagerly awaiting the official unveiling of their four new academic classrooms.
“Courage doesn’t always roar.
Sometimes courage is the quiet voice
at the end of the day saying,
‘I will try again tomorrow’” ~ Mary Anne Radmacher~
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Diary of a Cerebral Palsied Twenty-something Diary no. 48 by Penny de Vries
As it is people with disabilities experience immense ignorance and insensitivity from the general public but it is somehow worse when government officials or business people display this ignorance. Should those in government not have to attend courses in which they learn more about how to treat those who are, essentially, their customers? Especially if the government department in question is the Department of Social Development; after all this is the department that deals with social grants. Julia, despite living with cerebral palsy and using a wheelchair, is intelligent and competent in dealing with her own affairs. Many people do not realise this because they make the assumption that disability affects one’s cognition. While this might be so in some cases, it certainly is not in all cases. Julia and her boyfriend were mugged a few weeks ago; her wallet was stolen and with it her SASSA card. Her caregiver took her to the Department of Social Development to arrange for a replacement. Then the nightmare begins; being mugged was mild compared to this ordeal. They refuse to talk to her but talk to her caregiver; when both of them told these officials that they should address Julia directly, they refused saying that the caregiver is the one who brought her in so they must speak to her. This is nonsense and makes her feel as if she is not a person. Her caregiver is there to assist her not them. They also spoke in Zulu so my daughter did not understand everything they were saying. What made it worse is that they were not helpful or efficient in explaining what was required. She has no utility bills in her own name and therefore no proof of address. They could not give her an alternative solution without much to-ing and fro-ing. Eventually after hours of this, she acquired an affidavit from the police station and only then did they tell her that she also needs 3 months of bank statements. Could this not have been explained in the beginning? Then they could have collected those while to-ing and fro-ing. It is difficult enough living with a disability without having to be stressed out by the very people who should be assisting. The cherry on top was that throughout this confusion, the men constantly flirted with her caregiver and tried to get her to give them her phone number. This is downright sexual harassment and should be stamped out. She often has to deal with this sort of unwanted attention from policemen, security officers, bus drivers; you name it. I understand that in some cultures, family members of a person with a disability do all the talking and
arranging. This might be because families themselves have to learn how to empower the disabled family member. Nevertheless, the officials should be trained in how to deal with all types of people. They should be encouraging family members to allow their disabled to speak for themselves, where this is possible.
Remember if someone is in a wheelchair, do not assume they are incapable of conversing with you; ask them questions directly and do not converse with the person pushing their wheelchair as if they do not exist. P.S. I sent a version of this to The Mercury but they declined to publish it. I was not informed why – perhaps it’s not a ‘sexy’ topic.
“What lies
behind us and
what lies before us
are tiny matters
compared to
what lies
within us”
~ Ralph Waldo Emerson~
Page 4
Fresh off of my twenty-fourth birthday and
living with a condition known as spastic cerebral
palsy, I consider most things in my life to be causes
for joy and gratitude. After all, I have a full-time job,
several good friends and though severe, my
disability is not in any way degenerative.
However, one thing which has become a major
annoyance, particularly since entering adulthood is
constantly being labelled “courageous” or
“inspirational”. Considering that I’ve been disabled
from birth (brain-damage due to complications
during labour), you might think I’d be used to it by
now. The fact is that I’m not. You see, calling
someone courageous tends to imply that they had a
choice in their situation, like a fireman running
into a burning building or a police officer taking a
bullet to save a civilian.
Well, I hate to break it to you (no, not really) but had
I actually been given the choice, I doubt very much
that I would willingly have confined myself to a
wheelchair for my entire sojourn on this little blue
planet.
As for being an inspiration, people who say this to
the disabled – usually with a quiver of sentimental
reverence in their voices – are undeniably well-
meaning, but none of them seem to realise the
pressure such a statement carries.
If I were to attempt to live up to this classification, I
would be unable to admit that there are days when
I’m painfully reminded of my limitations and trust
me, at times like
those, my attitude is
anything but
“inspirational”.
This may seem
stupidly obvious,
but the most
important thing to
remember about people with disabilities is that even
though some of us may look like human-vehicle
hybrids, we are human and our personalities comprise
far more than the challenges we face.
As a simple example, think about the following
scenario; you head to a restaurant one night to enjoy a
meal with some friends. Among those gathered is the
new girlfriend of one of your mates. This is your first
time meeting her; she’s smart, bubbly and attractive,
except for a large, unsightly mole on her cheek. Now,
unless you’re a complete social cave-dweller, it’s highly
unlikely that the first words from your mouth would be,
“Hey, nice to meet you. I’m really sorry about that awful
thing on your face.”
So, what’s the point of this little rant? I guess it is my
humble effort to remind anyone who happens to read it
that disabled people are ordinary folks just trying to
get by like our bipedal counterparts, perhaps just a
little more slowly.
Taken from: http://brettfish.wordpress.com/2014/09/16/taboo-topics
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