Tag Archive: Retinitis Pigmentosa

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]


From my friend, Dalene Reyburn: So, I’m honoured to be hanging out with Brett in this bustling corner of the internet to introduce the next Taboo Topics series: people with special needs.

I think Brett’s a hero for having the courage to open up these sorts of topics – things that are often ignored or misunderstood or too fraught with pain to be voiced. This series will give parents and others a safe space to be honest about difficult – confusing – deflating – journeys. A chance to recapture big-picture perspective, and to glimpse God’s glory.

Our eldest son is visually impaired. My husband and I know the emotional exhaustion – fumbling prayer – making stuff up as we go along – of parenting a child with special needs. We’ve done the pointless projections of long-term scenarios. We know how it feels to carry the tension of uncertainty and the fear that our child’s heart will be hurt by life. We’ve experienced people’s kindly ignorance. Sometimes we feel side-lined and sometimes we feel conspicuous and sometimes we’re tired of feeling like That Family. We’ve done anger (where the hell was God?), doubt (does God even love us? Or love our kid?), and guilt (did we do something wrong?). And every day we know the terrifying joy of watching our hearts walking around in someone else’s body.

We’ve also experienced incredible compassion – the enormous warmth and sincere interest of friends and family and total strangers who love us. So many have held up our arms. And this series is about holding up yours. Alongside Brett, I’m praying that these posts will be comfort and relief for brave parents of braver kids. Please come. And know that you are not alone.

‘Don’t be afraid,’ he said, ‘for you are very precious to God. Peace! Be encouraged! Be strong!’ Daniel 10:19

Meet Lauren van Zyl and her son Noah [A.D.D., Learning Disabilities & Auditory Perception problems]

Meet Louise Bowley [Asperger’s Syndrome]

Meet Shaina Cilimberg [Aspergers Disorder]

Meet Susannah and Monrovia Prinz – [Deaf, from a mom’s perspective]

Meet Kashveera Chanderjith – [Deaf, from a grownup’s perspective]

Meet Rebecca Benn – [Dyslexia]

Meet Steph Mclennan [Mild Ataxia – Cerebral Palsy]

Meet Keith Slabbert [Quadriplegic – Broken neck]

Meet Michelle Botha – [Retinitis Pigmentosa – Degenerative Sight Condition]

Meet Helen Laas – [Soft Tissue Spinal Damage – Car accident]

Meet Lachlan Nicholson [Spastic Cerebral Palsy]

Meet Gabriella Del Fabbro [Spastic Quadriplegic Cerebral Palsy]

Meet Uel Maree [Spinal Cord Injury – Unfortunate Diving Accident]

[If you are someone living with a disability  or a parent of a child with a disability or know someone who might be up to sharing their story, please contact me at brettfish@hotmail.com – have some stunning stories on the way, but always room for more]

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