Taboo Topics: Living with Disabilities – Meet Sabrina and Gabriella Del Fabbro [Spastic Quadriplegic Cerebral Palsy]

Without getting too technical, the simplest way to explain S.Q.C.P.

Cerebral Palsy – injury to the brain which controls movement of the body

Quadriplegia (or Quadriplegic) – all four limbs are affected

Spastic – spasticity in the body is high, affects the muscles, pulling the body in awkward directions

My Little-Big Sister

My little sister Gabriella, was born with Spastic Quadriplegia Cerebral Palsy, three and a half years before I arrived in this world. Although Gaby is technically my older sister, she will forever be “my baby sister”

 

Most people wonder why they were placed on earth, what are they meant to be doing, what is their purpose? My purpose is… Gaby! (well, I think so at least!)

My parents have told me how Gaby used to cry every night before I was born and as soon as I arrived, she stopped. She had to be the big sister now. I have seen many pictures of Gaby lying next to me with her arm over me or rocking my Snug & Safe (baby chair) on the floor. She was looking after me!

As we grew older I never really saw a difference between Gaby and I. We were sisters who would play together just as any siblings would. Okay, our playing might have been very different to the norm but it was fun and hey, I never knew any different. Gaby and I did everything together, where she went I went, what she wore I wore. We were pretty much like twins. I was never apart from my sister.

It only started getting harder when I started school. People with disabilities were never spoken about unless you knew of someone personally. It was a very hush hush subject and this is where the problem came in.  Here I was, a bright cheerful girl who was so proud of my big sister that I was so confident to tell everyone about her… and that’s when those who were never exposed to people with special needs came in and changed my world. They would say mean, nasty and really hurtful things about my sister. That is when I became defensive about Gaby. No one, and I mean no one would ever be allowed to speak about my sister like that ever again. From then on out I became Gaby’s defender and protector. If someone even looked at my sister in a negative way, I would have it out with them. I did not care – Gaby deserved to be treated with the same respect as everyone else.

As I grew older I started becoming more confident and knowledgeable about Cerebral Palsy . This allowed me to approach anyone and tell them Gaby’s story and how she is no different to you or I. Gaby just needed more assistance, patience and understanding. This is why my family started Gabriella Centre – so that Gaby could have the chance to succeed in life, no matter how great or small. No one knows which way their life will lead, but one thing is for sure, I will always put my “little big sister”, first.

[Written by: Sabrina Del Fabbro]

[For more information on the Gabriella Centre, take a look at their website at www.gabriellacentre.org.za]

[For more stories of People Living with an assortment of Disabilities or Special Needs, click here]

Taboo Topic: Living with Disability – meet Steph Mclennan [Ataxia – Mild form of Cerebral Palsy]

“Why do you wear those things on your knees?” “Look at Steph, she is so slow. Ha ha!” “Why can’t she run and jump like a normal kid?” “Steph you’re a freak.”

These are the refrains that followed me around as a child born with the mildest possible strain of Ataxia, which is a form of Cerebral Palsy. As an adult, I am incredibly fortunate that I now live a “normal” life, have a “normal” appearance, and nobody could ever tell that I have CP. As a child, it was a very different matter.

My parents realised there was something wrong with me when I failed to meet any of the physical development milestones as a baby and toddler. I was taken to a specialist, who diagnosed Ataxia. “She may walk one day,” the good doctor told my parents. “She will never run or lead a normal life.” I have often thought about taking a jog past that doctor’s home. That is my first message: While doctors are obliged to be pessimistic, they are not always to be believed.

I started pre-primary school at Browns School for disabled children. Six months before I was due to start grade one, I was moved to a mainstream school, and it was here that my personal hell began, and it continued unabated until I started high school.

As a five-year-old, I can remember being held up against a wooden locker with a girl’s hands on my shoulders and having her shake my whole body body to make her point, because she could, and because I was physically unable to defend myself while she displayed her “power”. My mother tells me that she had to keep me at home for a day so that the teacher could try to explain to my classmates that I was, in fact, a human being with feelings.

The cycle continued through primary school, worsening in Grade 5 when, due to repeated episodes of my knees dislocating due to the lack of muscle tone, I had to start wearing knee braces. Not the fashion accessory a ten year old girl who already had coke-bottle glasses wants to be sporting. Here is another thing parents of disabled children need to know: the cruelty of children knows no bounds, and teachers often do not see it, or choose to ignore it. Your child, if he or she is anything like me, will not tell you the severity of the hell that they endure. Firstly this would mean reliving their ordeals in the safety of their home, and secondly they know the only solution is to not go to school, which no parent would ever allow.

From Grade 8 onwards, kids tended to leave me alone rather than pick on me, and life started to slowly improve. I breathed a massive sigh of relief in Grade 9, when my knees were declared strong enough that I no longer needed to wear the knee braces. However, I was still known as the kid who had been disabled, and it was only when I started university that I was truly able to start a “normal” life, and be seen as just the same as everybody else.

Another thing that parents MUST do is ensure that their child fully understands what is wrong with them, what their limitations are and how any treatment is helping them. I never fully understood the logic behind needing to wear knee braces and do vast amounts of tortuous exercises every day. If I had, I believe I could have made this time in my life a shorter one.

I have often wondered whether it would have been better for my parents to leave me in schools for disabled kids right to matric. If you are the parent of a disabled child, I urge you to think twice before putting him or her into a mainstream school. As I said, “normal” children will squash the joy out of every one of your child’s days, and while they may physically be up to the challenge of mainstream school, the emotional ramifications will be huge. Those scars are the only real remnant of Ataxia that I will carry with me all my life.

[To read more stories from People Living with a variety of Disabilities or Special Needs, click here] 

CCDA day 4 – last meeting – so i’ve figured at least one of the C’s stands for Cry [and now!]

so yes, i thought CCDA stood for ‘Christian Community something something’ but after last nite’s session and God speaking to me after last nite’s section and just the general worship vibes here and then this morning’s session, i have to conclude that at least one of the C’s has to stand for ‘cry’ – i have been on the edge of emotion for these last powerful 24 hours and wish all of you could have been at this last session with me cos words are going to horribly fail to convey much of what happened.

Lisa introduced the session by mentioning a book she had recently read called ‘Everybody poops’ which sums up so much and which i’ve been saying for years [your poo is the same colour as mine, whichever power-hungry attention-seeking celebrity you are] and was a great way to level the playing field.

today’s focus was young leaders and specifically emerging marginalised leaders so we had mentors and young people on stage as a panel and they shared testimonies and were asked some questions. and after last nite’s proclamation that i pretty much mostly only stand up for Jesus, i was the first one on my feet after Daniel who has cerebral palsy finished his speech… yes, speech, a guy who battles to speak coherently introduced by a beautiful spirited african american woman who began by telling us to “Stop what you’re doing and listen!” – put your pens down and your cellphones away and just concentrate and you will begin to understand what Daniel, who struggles to speak in a way we can clearly understand, is going to share with us.

and it was so completely powerful, and i definitely needed the introduction that called me to listen and validated his voice as someone speaking for the physically challenged [i am so over PC’ness and can never remember which term or label is okay so sorry to whoever i may have offended if i did but get your head out your ass and can we just see people already – enough with the labels! and the constant microscopic dismembering of them. rant over.] but i stopped and listen and heard [a lot, not all, but a lot] of what he had to share and to hear Daniel talk about his ministry and his mission and his gifting and how he takes opportunities – flip it just blew me away [i later wrote in my notes ‘i want to be a person who really listens to people’ – i think i am a fairly decent listener of people but i don’t know that i would have ever recognised that Daniel even had a valid voice – largely cos of my fear of what if i don’t understand, what if this becomes awkward or embarrassing? you know what? so what? work through the awkward and embarrassing together]

so yes, i stood up and applauded loudly and was deeply moved by him, and the lady that so lovingly introduced him and helped validate or give foundation or invitation to his voice… 

and then they followed it up with this young woman [well young to mid thirties maybe] whose name i missed who started by saying a picture often speaks 1000 words and showed five pictures of herself looking pretty hectic which i only realised later were her five conviction police line-up pictures. She had gone to jail five times for stealing and had done a bunch of drugs “I spent 20 years with a needle in my arm” and was just a complete mess, until someone took a chance on her and made her head of Restorative Justice in some organisation and when she said she had no clue how to do it, her mentor responded with ‘learn. google it. read. figure it out.’

she is now the director of Restorative Justice and two semesters away from getting her degree and about to be married in January – a whole bunch of stuff she thought she would never be able to do because of who she was and what she’d done and the addictions she had been involved with and in.

she shared how at one point she used to live on the second floor of a building opposite a church and on Sundays she would sit on the balcony with a beer and look at all the pretty people going off to church and she wanted to cross the street and go with them: “I didn’t know how to cross that street. I just wanted to get across that street!”

she reminded us that “you’re dealing with a lot of young people who don’t really believe in themselves” [echoing the Unconditional Love we were reminded about last nite]

she told us that when she met her fiance who was brought up in a Christian home and had a faith background he didn’t want to know about her past in terms of letting it define who she was but was more interested in who she was now and who she was going to be.

She finished off by telling us that if we see someone in the street we should extend the hand and offer to try to lift them up. It might be hard for them. It might be hard for you. But just do it. Cos that’s what we’re about, right? Being our brother’s keeper? 

i finished the session by writing this in my notes: I want to stop being afraid of people I can love/help because I might “do it wrong” or not be able to understand them or know how to help.

man, this account doesn’t even start to capture today at all. just imagine a really emotional and really profound experience of viewing lives that had been touched and changed by other people who took the time [and often it wasn’t easy and often the stories don’t end like these ones] and energy to build into their lives – to love them and believe in them and offer them an opportunity to live and thrive and have another chance at being a world transforming person.

every person has value. do we see it? 

[To see the start of this series of talk summaries and moments, click here]