Tag Archive: taboo topics


rebecca

Being a dyslexic:

Hi there, my name is Rebecca Benn, and I suffer (although I find my condition to be a blessing) from a learning disability or syndrome called dyslexia. The dictionary defines my syndrome as a developmental reading and spelling disorder that occurs when the brain does not properly recognise, transmit and process certain symbols, whether these symbols are letters or numbers. What this means for me is that as a 20 year old I have the reading age of a 12 year old and that when I write letters, although I mean to write or type a ‘d’ I may end up writing a ‘b’ or a ‘p’ or a ‘q’ or even a ‘g’, this can happen with many letter and even some numbers. It also means that I hear word sounds (mainly vowel sounds) totally different to normal people, so you may write business but I will write buissnes. On the face of it you may think that this does not sound that bad, but the syndrome is so much more that, my thinking pattern is totally different to other people, also I have to deal with some other issues because of my syndrome that are not related to learning, like a paralysing fear of the unknown. This fear means that I will stress about anything new in my life, whether that is learning something new, doing something new or being somewhere new.

Growing up:

“Stupid” or “dumb” were the words most often used to describe me, kids can be very cruel and although I always knew I wasn’t (thanks to my great family), I often felt both these things. It was my mother who first saw that I was different, she could see that I was learning things in a different way to my siblings and in grade 1 my parents had me tested by an educational psychologist despite the fact that my teacher told her that she was just a neurotic mother and that I was merely a slow child. Up until grade 9/10, school was probably one of the worst things in my life. The educational system in South Africa just doesn’t cater to children who need to learn differently. The most irritating thing about school was that I knew I was intelligent, and even though I understood concepts, I just couldn’t put them down on paper in a coherent way whether it was in english, math or any other subject. However thanks to some dedicated teachers, and the most amazing mother (who even home schooled me for 2 years to help me deal with my disability), I made it through and found a place to stand tall in grade 10. I came to see that my disability took nothing away from my intelligence, it only added a unique perspective to the world. I realised that if I didn’t accept myself others wouldn’t. Although I have come to understand and even love my disability, I am not over it, and even though I have improved I will never be rid of this syndrome. Each day is a challenge, but I will continue to accept the challenge and strive to learn from it and use my experience to help others like me.

So if you what to help me or others like me, you may want to remember these things.

Please don’t:

  • think or talk to me like I am someone of a lower intelligence level, I actually have a quite a high IQ, I just have trouble putting it down on paper or reading it out to you.
  • try and fix me or come up with solutions to my problems. I know you may just want to be helpful but unless I ask for your help or see you as one of my support system I may see your attempt to help as offensive.
  • call me out in public (whether in person or on a social media) about my spelling or reading abilities. Although I have lived all my life dealing with people embarrassing me its still a lame thing to do.
  • Please don’t tell me you know how I feel, and that when you where younger you had a little bit of dyslexia. Because you didn’t, dyslexia is not something you have and then get over, it is a life-long struggle.

Please do:

  • Lend me your help if I ask for it
  • Ask me as many questions about my syndrome as you wish.
  • If you think you child may have a learning disability get them tested and then get them the help they need.

[To read some other stories from people living with disabilities and special needs, click here]

 

keith

Hi I’m Keith. In the early hours  of 26th of August 2012 I was found lying paralyzed on the floor next to my bed. I had suffered a seizure while sleeping and fell to the floor. I had broken my neck by fracturing my C4 vertebrae, which has left me to be a quadriplegic.

I have no wrist or hand movement. I have regained use of my arms from originally not being able to move  them at all. Having movement of my arms has allowed me to do certain things independently once being set up, like being functional on my laptop, brushing my teeth, drinking out a cup and using my  push button cellphone.

One thing that has changed besides the obvious is that my days need to be planned before I get out of bed. Before I could just getup and decide at the spur of the moment to go to the beach or to the movies. Doing anything now takes time and needs to be planned. My body is super heat sensitive and I need to make sure I’m dressed for comfort. I feel the slightest wind breeze on my skin, my arms and neck area’s need to be covered. Being in air conditioned places make me very uncomfortable and my body stiffens up and I eventually get muscle spasms.

With regards to seeing people out in public and those ‘awkward’ moments when people don’t know how to deal with people in wheelchairs. I think people should just ask what happened. I don’t have a problem with people asking, I know they want to know and it would break the ‘awkwardness’ for them.

There is so much more to a quadriplegic than just not being able to walk or use our hands. Our whole nervous system has been shut down and the body has different ways of reacting to different situations. I have no feeling from my chest down, so i am not able to tell if there is a problem with my body for example, a broken toe or any injury, internally or externally. So my body will let me know by twitching or perspiring.

I can go on for days but i think we should leave it there for now…

[One day we hope that Keith will share some stories about that clearly possessed dog he has on his lap]

[To follow more of Keith’s Journey, you can like his Facebook Page over here]

[For other stories of People who are Living with Disability or Special Needs, click here]

Shaina

My name is Shaina Cilimberg and I am almost 27 years old. I was diagnosed with Asperger’s in the Dark Age, the 2000s. Back then, there was limited knowledge on Asperger’s Disorder. It was a time when mental illness was seen as demon possession or an excuse for sin. While Satan does attack everyone’s (neurotypical or not) minds, mental illness is not demon possession. Demon possession has more to do with the individual, not with mental disorders. Mental disorders are not made up excuses for sin, but real chemical imbalance in the brain. Add that to the fact our frontal lobes are not completely developed until our mid to late twenties.

It took me a while to actually accept that I have Asperger’s. Then, I found out more and how the traits related to me. See, some people (including professionals) will say you do not have it, while other say you do. I think people need to educate themselves on what Asperger’s/Autism is and realize we are not the some. While some of us are introverts, others are extreme extroverts. I’m an extrovert.  When I get an outfit I like or haven’t worn the outfit I like in a while, I want to be seen in it. I really enjoyed reading the Diary of Anne Frank because I saw myself in her. She was fun and bubbly. She was different from those around her because of her personality. She wasn’t boring.

Today, I read something on a blog about how my fellow Aspie girls and I have a tendency to root for the underdog. I guess that’s why I like Jack Frost from Rise of the Guardians so much. He is misunderstood and faces constant rejection and I have experienced that a lot in the pasr. I really like “Let it Go” from Frozen. I struggle with OCD, Asperger’s and vertigo and it just is a good way to tell people not to worry so much.

As a Christian, I need to trust Jesus, but it is so hard. All the stresses of life, worries and fears get in the way. I see others have seemingly better lives and feel depressed because mine isn’t perfect. Yet, I want to help others.

I am a struggling author who wants people to take her books seriously and learn from them. I want to be believed when I’m telling the truth and want to be believed in. Jack Frost wanted to be believed in as well. I just relate so much to him. Maybe I’ll find my center and why I was chosen to be like this.

My books are for teens and young adults, called Deep River High Series. They tackle serious issues such as friendships, bullying, eating disorders in males, OCD, Aspergers and other topics. They are really good stories I think teens and young adults would benefit from.

I do have to warn you; I’m like most females who have a thing for angsty male characters. Selena in To Be Sane is an angsty female, though and Lydia could be considered that in Perfect Forgiveness. I am currently working on a Christian Fantasy novel, which will take a while. I want to really make sure it’s well-written.

The best way to overcome insecurities where you are in life is to not compare yourself to others. We should have Christ-like role models to imitate as they imitate Christ. However, we should not mope because someone’s life seems so much better than ours. I may not be popular or “normal”. I may be boring to some and outlandish to others. I’m me. As long as I try to improve myself as a human being, that’s all that matters. I don’t need to sell my soul to the Devil to be happy and I refuse to. I burst into songs from Frozen and am obsessed with Rise of the Guardians. As long as I don’t put those two over Jesus, I’m fine.

I am so grateful for Rise of the Guardians because it is a great example of how to write a story and character well. I want people to feel towards my book characters the way I feel towards Jack Frost. I want them to feel for and relate to my characters. I want to write my characters showing emotions in different ways than just the same old same old. Rise of the Guardians does so well with that.

One of my struggles with OCD and Asperger’s is the intrusive thoughts. They really bother me and won’t go away. I can’t concentrate on conversations because of them. I get all these thoughts of second-guessing myself, my friends and things I like/don’t like. Some of these thoughts are blasphemous towards God and they just won’t go away.  If you believe in prayer, please pray for me. Even if you don’t, think about us who suffer. We are people with goals and dreams. We do not want to be overlooked by the system any longer.

People who say those with Asperger’s lack empathy, but they could not be anymore wrong. I care a lot for others. I have tons of empathy which can lead to be taken advantage of, as another trait of Asperger’s says. I was reading the Maze Runner and had too much empathy for the characters to continue. Even the Hunger Games characters had more hope than they did. I actually am a fan of Hunger Games.  In fact, over-empathetic can be a trait of Asperger’s.

I am very protective of people’s freedoms. If feel horrible if someone is forced to have their hair cut too short, wear something not appropriate to weather or our culture. One time, I tried to get a church school to allow the boys to have hair to their ears and I was the “bad guy”. I was just trying to let people see a guy does not need hair above his ears in order to be short and that ear length is very normal for guys.

As a Christian with Asperger’s, it is hard to fit in anywhere. I always worry about offending or upsetting people. I have to deal with people not believing me when I am telling the truth and worry about losing friendships. I worry about whether or not I’m in the right friendship. I worry about Hell because of blasphemous thoughts or because I love Fantasy or because I prefer guys to have longer hair than some think they should. Everytime something seems to be going right it isn’t and good times are sure to end more than the bad times it seems.

People with Asperger’s lack an awareness of social cues and have poor social skills. The extroverts like me are always bound to say the wrong thing, no matter one. It’s like we either do not comprehend what is said to us or others don’t comprehend us. I could make all the guesses about the introverts but I don’t know. Some really can’t talk and have trouble with speech. If I were an introvert, it would be a “why bother trying” thing for me. Since I’m not, I just talk and regret everything while or after and it consumes my mind.

People see us with Asperger’s as either unintelligent or extremely talented. I’m neither. Don’t assume I can’t swim, can’t read or be amazed I wrote a good story. If I’m telling you a prayer request, don’t pass it off as deep. If I show interest in friendship, give me a chance. Talk to me and communicate with me. Give me a chance in employment.

[To read the story of Keith Slabbert, who suffered a seizure and broke his neck, click here]

[To read some other stories of people living with different disabilities, click here]

noah1

I am a mom to a child with special needs. This is not something we were prepared for or ever expected. Noah looks like a normal little boy and his disability, for want of a better word, is not visible. It makes it easier and infinitely more difficult for him. Because he is not visibly disabled there are no allowances given for what he battles with every day. He is labelled as naughty, undisciplined, disobedient and a daydreamer. Noah has a learning disability coupled with ADD. He also has Auditory Perception difficulties.

Here is his story. Noah arrived two months premature after my waters broke due to an infection I did not know I had. His prematurity meant that he had a big delay in milestones. It put him in the high risk category for learning difficulties and behaviour problems. That he left the hospital at all is a miracle. One of the worst things I was ever told was that my beautiful boy would need extensive therapy to ever be normal or to walk properly.

noah2

This was told to me not in love but in spite by someone who should have known better. I have developed a much thicker skin over the years but at that stage I was very distressed. Please be careful what you say to a mom whose child is slower or different. We love our children just like you love yours. We are very sensitive to criticism and as we ourselves are learning day to day about our child’s ability, don’t make statements about their future when we ourselves have no idea what tomorrow may bring. Just love us and our special children, support us and if you do not know, ask. We sometimes just need a shoulder to cry on.

Noah has never suffered with the health issues that premmies have but he battles with a number of learning difficulties. We are fortunate to have had an excellent paediatrician and Grade RRR teacher, both of whom helped to identify learning difficulties early on. While Noah is physically healthy, emotionally he functions at a younger age than his peers. He is impulsive and has little concept of delayed gratification. He gets frustrated very easily. He doesn’t stop to think of the consequences of his actions which has led to some hair raising near death escapes. It also leads to huge discipline problems as he does what he wants without thinking of the consequences to both himself and those around him. He also has a hair trigger temper which he finds nearly impossible to control when he loses it. I am the mom in the shop whose child has to be carried out shrieking his head off.

He has an auditory perception disorder, which means that while he is perfectly able to hear you, he battles to process what he is hearing. He will often ask us to repeat what we have said a number of times. He battles to understand what is being said in a group. If you do not look at him when you talk he battles to understand what you are telling him to do. He also assumes that if you are not looking at him you do not hear him. If there is any ambient noise, like the radio, television or people talking he also battles to understand what is being said.

He has attention deficit disorder, a label which is bandied about and which does not sound too bad until you live with someone who struggles with it. ADD means that he battles to concentrate on more than one thing at a time, he cannot follow orders if there is more than two steps in the process, he is easily distracted by anything and everything around him. He battles with low muscle tone, balance, poor pencil grip. These all make basic activities such as eating, climbing a jungle gym or learning to write difficult. Please do not just take for granted these things if you have a normal child. They are a huge blessing.

When we finally had a name for what Noah battles with and we had to face the reality of putting him in an LSEN school, it was a huge blow to our family but also a relief. It took my husband and I a very long time to work through the reality that our son was not “normal”. It was a period of grieving for me as I had to put aside all my dreams and expectations for Noah and come to realise that we now have a new normal. His sister also bears the burden of a brother who is different. She gets distressed when he loses his temper. She compensates for him and helps him when he cannot understand something. She is very patient when he has taken so much of our attention and has also had to grow up a little bit faster than necessary.

We are a family who were not given a manual when our special son was born and so mostly we learn as we go, all of us making mistakes as we learn how to parent Noah and he learns how to live with this package he has been given. He is in a special needs school. We have no idea if he will ever be able to mainstream. We are told that his problems may improve to the point where he will be able to go to a “normal” school. But they may also not improve or he may never be able to function in a mainstream school. He battles to function in his day to day tasks and this may be something that will always be part of his life. We are so grateful for every milestone reached. For the first time this year his report card said that he was average. I cried. Average is so much better than getting 0’s or 1’s.

Please, stop before you label a child as naughty. Get the facts straight. As parents of a child who does not conform to society’s standards of normal we are doing our best to raise our special son and he is doing his best to deal with the package he has been given.

Thanks,

Lauren

[If you would like to follow more of Lauren’s crazy journey, you can head on over to her blog at seasonalsanity.blogspot.com]

[To read the story of Shaina Cilimberg and her struggles with Aspergers Disorder, click here]

[To read other stories of People Living with Disability, click here]

SONY DSCAt two years old, after numerous visits to various specialists, I was diagnosed with Retinitis Pigmentosa (RP), a degenerative sight condition. RP affects the cells of the retina and results in tunnel vision, night blindness, severe light sensitivity and consistent sight loss. In short, I was going steadily and irreversibly blind.

It has been quite a journey so far. Moving from sight to blindness brings with it a set of challenges somewhat different to those faced by people born blind. There is a constant need to adapt, to make another plan, to let go. Now twenty-six, I have had to adapt to my inability to read print, my growing need for mobility assistance (enter Panda the guide dog) and my increasing tendency to miss subtle visual cues.  More than this, I have had to adapt my identity. I have had to learn what it means to live with disability, what it is to take on the identity of disability.

The first lesson I have learnt is that denying disability has serious costs. I spent many years denying my disability. I refused to ask for help, I swore never to associate with other disabled people, I put myself in physical danger to avoid using mobility aids which would “mark” me as different. This only led to stress, intense anxiety, loneliness and strained relationships. When I first began studying at The University of Cape Town I used no mobility aids. My sight was very limited by this stage but I refused to identify as blind. Now it must be said that UCT (being built on the side of a mountain) is a death trap for the blind. The anxiety I experienced while negotiating stairs, bollards and bustling students caused me to feel constantly ill and exhausted. I reached a point where the cost of denial seemed far greater than the cost of revealing myself as disabled. When this happened I began, albeit tentatively, to self-identify as blind. I did this through accepting assistance, taking on the “markers” of blindness such as my guide dog. I began to form valuable friendships with other blind and disabled people while deepening my existing relationships, beginning to share the hard experiences with some trusted, long-standing friends. I began using the blunt, bold word “blind” to describe myself.

Through this process I learnt a very important second lesson. Disability cannot be overcome. I know that sounds controversial and maybe a bit negative. We all love to hear stories of the human spirit triumphing over the odds but I believe these are in the business of denying the realities of disability. Blindness is not the flu. The flu can be overcome with rest, medication and a “just get on with it” attitude. Blindness is about eyes that don’t see, eyes that don’t work in the way they are supposed and expected to. A “just get on with it” attitude, while it might inspire others to be better, more grateful, less selfish has the potential to mask the really hard things that disabled people experience. Yes, there are good times, good laughs and times to celebrate. When I received my Master’s degree I unashamedly threw a party to celebrate my victory. But there are also hard times. There are frustrations and disappointments linked directly to the fact that I cannot see. For example, I struggled when all my friends began getting drivers licenses because I knew that this experience of heady independence was never going to be open to me. I’m not suggesting that we all throw our hands up in despair and wallow in self pity (although a good wallow is sometimes required). I’m suggesting that we (and I include both disabled and able-bodied people here) make space in our relationships to share the hard stuff.

Of course, in order to do this, we first have to start these relationships. Once I was sitting at UCT reading a set book. At this time I was still able to read a little with the help of a magnifying glass which made me look pretty conspicuous I would imagine. This guy who I had met once or twice came and sat down next to me. He said, “So are you blind or something?” His tone wasn’t mocking or accusatory just frank and genuinely interested. “Yup”, I replied, not looking up from my book. “Okay”, he said, “What are you reading?” We became good friends and the openness of that first encounter set the tone for the rest of our friendship. There is a fine line between making disability everything and making disability nothing. In this encounter my friend didn’t make disability everything, he recognised that it was not my sole defining feature nor the only thing interesting about me. It didn’t dominate our conversation going forward. At the same time, he tackled it head on. He didn’t attempt to make it nothing by ignoring it’s obvious presence. That took a fair amount of courage because disability is awkward. It makes people uncomfortable primarily because no one is really sure what to do with it. Can I say that? Should I ask that? Can she do that? Will that offend him? There is simply no way to guess the answers to these questions because every single disabled person is a unique individual made up of complex experiences. For example, I personally hate the term “differently abled”. I think it smacks of empty political correctness. That said, I have a blind friend who loves this term and asks people to use it instead of “disabled” when referring to her.

So how, you ask, am I ever going to be able to feel comfortable in the knowledge that I’m going to say the right thing? Well, I’m sorry to have to tell you, but you won’t. So, I hear you ask, am I just supposed to start talking and hope for the best? The answer is, with help from a little empathy and common sense, yes. The real challenge is not to always say the “right” things but to build relationships tough enough to handle the saying of “wrong” things. The key word is “relationship”. We can’t know people’s stories unless we begin to grow friendships. Messy, complicated, time-consuming, hard work friendships of trust, honesty and empathy are how we enlarge our worlds and begin talking about the hard stuff.

[For the story of a mom learning to deal with her son Noah’s Learning Disability coupled with A.D.D., click here]

[To read other stories from some incredible people living with different disabilities, click here]

uel

Hi, my name is Uel and pre-December 2011 I was an avid rock climber, swam in the sea a lot, gymed, organized adventure camps and helped out at church.

But in December 2011 i dived into a river and well, i didn’t end up winning any medals for my attempt but did unfortunately break my neck leaving me paralyzed from the chest down…..

I was air lifted to hospital where I spent 100 days, eish. The doctors didn’t have much hope for me regaining any movement below my shoulders and classified me a quadraplegic.

2 and a half years later I can now move my arms and my wrists, i have sensation in some of my fingers and recently my stomach muscles started working… hey, gotta do some crunches for summer.

Life is obviously more difficult now. I can’t brush my own teeth, I can’t scratch my own shoulder, i can only feed myself certain foods if I’m in a specific position, I can’t hold a glass, I constantly fight with my duvets (and they win) if my arms get tangled, I can’t speak for too long without getting out of breath as my diaphragm is weaker, I can only swallow food with my head in a certain position as my throat muscles are stronger on 1 side (weird right?), I pee in a bag cause I can’t walk to the bathroom, I can’t fight off spiders, I can’t stop myself if I fall over, I can’t brush my hair…cause my head’s shaved so I ain’t got any! HA! And the list goes on…..

I’m 6ft2 and so getting me into a car is super tricky and we don’t have a wheelchair friendly car. Because of that, I don’t leave home often but even when I do, after a couple hours my body is tired and I need a bed.

Going out to familiar places and not being able to do familiar things is tough on the soul. Like flying to Hawaii and staying in the aeroplane while everyone else disembarks.

Though going out is good at times but my parents need to carry snacks to feed me regularly so my blood pressure doesn’t drop too much cause then I faint. Oops. I’m not some strange hybrid Transformer creature with wheels glued to my behind. I’m just a guy sitting down in a wheelchair….for now so I’m not quite sure why some people stare at me like I have coodies and they may catch it?

Perhaps in this performance based world where in many countries, if anyone has a disability; they are left to die as infants, or cast out, or put in homes, or even hidden from the public as I recently found out happens in my own back yard just outside Cape Town. But I come from a loving family with the most wonderful people in my life so luckily I’m allowed out into the open and don’t have to live in a bell tower.

In my current condition, when I go out, I’ve noticed 4 types of people:

1) those that try to ignore you so hard that it becomes awkward (like people trying so hard not to look at a beggar).

2) those that stare and gossip.

3) those that act over friendly as a type of over-compensation.

4) those that act normal.

Just to let you all know, number 4 is the winner, do that more and it boils down to education. Not the school/university type of education, but just people skills and realizing that this is what life dealt us. Some are paralyzed, some are born that way, some have an extra chromosome, some catch a disease, some have a chemical imbalance and for some it was an accident but NOBODY chose it so let’s have a little compassion….not pity but the greatest of all – Love.

I think that all kids/teens (and adults) should be exposed to orphanages, homes for mentally disabled people, old age centers, cancer wards etc etc and you know what, you may just be surprised at the wonder and beauty you find there. Let’s stop aiming at producing *celebrities and pro-athletes but start aiming at creating caring people.

Many people in the conditions mentioned above don’t have the most love and support because they often get labelled as outcasts. So be a light in their lives and add a little more shine to this world.

Much love – Uel

*Disclaimer: I don’t have anything against celebrities or pro-athletes and none of them were harmed in the making of this

[To meet Michelle Botha and hear some of her story of dealing with a degenerative sight condition, click here]

[To return to the Intro page and read stories of other people living with disability, click here]

Lachlan new 1

I’m a quadriplegic, not an inspiration

By Lachlan Nicholson

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.

[To meet Uel Maree who had an unfortunate diving accident, click here]

[To return to the start of this series, click here]

%d bloggers like this: