I thought I would write an article about making the white stick trendy to help my daughter accept it as an essential part of her going out attire.
In reality I don’t think that’s going to happen. What needs to happen is a harsh lesson of reality for both me and my daughter. For me as a mum, I need to accept that my daughter copes. My daughter needs to accept that sometimes things do help, and benefit her, even if she doesn’t like the look of them. Maybe that comes with age and an acceptance within society.
At birth, CJ was a gorgeous baby with vivid blue eyes and was in my eyes perfect. Very few people could admit to me that I had a perfect daughter, which really upset me, but she was and still is, perfect. As a woman in a male dominated job I was determined to have an independent and self-sufficient daughter and this is how I have attempted to raise her.
As with other babies, CJ seemed to develop normally, at every weigh in with the midwife she was exactly on their red line where they wanted her (this point is important for later in this article), so I had no concerns. She learnt to swim and ride her little trike around the garden like all the other toddlers, occasionally crashing into things, but nothing of great concern. We progressed from three-wheeler to stabilisers and eventually graduated to a big girl bike. It was at this point as her confidence grew and she became faster on wheels, lamp posts tended to get hit, I remember two that were ridden into! Then there was the dog lead incident… dog on one side of the path and owner on the other, add a toddler on a trike and you get a rather tangled situation! As a toddler she would keep revisiting Iggle piggle and kiss the TV screen. I would pull her away, time and time again, as instructed to do so by the health visitors.
At the age of three, we were called into the opticians for her first eye test, before starting pre-school. Both her dad and I have a family history of eye issues. Dad has blue eyes too and needs glasses, but we didn’t know why. His mum had recently died, so we couldn’t ask her. On my side of the family, I had a grandparent who was blind in one eye and partially sighted in the other, but that was due to glaucoma. So as a precautionary measure we were sent to the specialists. During the session the consultant almost fell off his chair in surprise at what he had found. His first language wasn’t English, so he was overly elaborate with his explanation to his discovery. “She’s blind” is what I did understand. “Confirmation will be required at Great Ormond Street Hospital”. “She can’t be, she rides a bike, swims, walks and is now reading. It’s the test you gave her, the lady’s voice, your assistant, her voice went high pitched and that encouraged CJ to play you up… She (CJ) thought it was funny to hear the lady’s voice”. That was my argument… “No, Mrs E, your daughter is blind. She has an albino gene”. The consultant repeated. Ages later, I learnt to pronounce the diagnosis which is optic nerve hypo displasia… basically a narrow optic nerve.
My daughter is browner than the table how can she be albino? Years of bewilderment pass, as my daughter swims fantastically, still rides her bike, and tans in the sun. When we ride bikes I insist she stays behind dad, which really annoys her, because dad also has blue eyes, but is allowed to drive a car with glasses. The consequences of CJ riding out in front are just not worth it. We relocated the family to the south coast to be closer to grandparents and CJ’s eye appointments needed moving too only to be told a similar thing by a completely different consultant, who didn’t have a high squeaky voice, who also confirmed that the chances of CJ being able to drive a car was not going to be possible.
The visual impairment certificate arrived with the knowledge in me that, “that was it then. My daughter’s independence has been shattered by a consultant who didn’t get children, who had no appreciation of my daughter’s intelligence or her perfection, how bloody dare they”. How does that help us, telling me she’s blind now? As a mum, I felt awful, I’ve taught her to ride a bike, read and basically be a child. How silly is that! A pinch of reality hit me, when I swim away from her, as I swim back, I’ve notice when she acknowledges me with glee… I’m about 8 to 10cm away. No amount of consoling from other people touched my self-conscious and guilt. I know there are worse things out there. But my daughter is perfect. Why do I feel so bad, when there are worse things out there? Somehow, with all the perfection of my daughter, her optic nerve, just isn’t big enough… how has that happened? Surely optic nerves come in standard sizes don’t they?
The stupid thing is, both dad and I knew of the eye sight difficulties in the family. You just don’t think about your optic nerve when the passion takes over (well, I didn’t).
So now CJ is at secondary school and in all fairness has done brilliantly. She has a EHCP in place so the school recognises her poor eyesight. Prior to her starting the school, the steps on the school grounds were painted yellow and they blow print sizes up on exam papers so CJ can read them. However, the school bared her from riding her bike to school which was like an atomic bomb had been dropped on her bedroom. “I want to ride” she shouts at me… I reply, rather meekly, “It’s not my fault!”
Each October I look for a new school coat for her. I am quite old fashioned in that I believe children should walk to school. So I am also strict with our selection of the school coat, considering a teenager, as all teenagers do, refuse to wear a high vis. I specifically look for the next best thing. We manage each year to find an affordable brightly coloured coat, somehow, with CJ’s approval. Preschool age, it wasn’t a problem. Teenagers get opinionated. Fortunately, since being a teenager, yellow hoodies have become trendy and she even received compliments at school for her yellow coat! So her favourite top is florescent yellow. It’s me that needs sunglasses, just for being in the same room! She is predicted fantastic grades in the subjects she enjoys, which includes art. During the summer holidays, CJ stays with my sister and they go camping with aunty. Aunty volunteers with the Talking Newspaper, and there have been a couple of occasions where CJ has read something on the channel. Of course, blown up… but it’s a confident read, and she’s received people phoning in and complimenting her for her pieces!
Another younger child is also visually deficient at the school, but as a younger boy the friendship doesn’t really work out, with CJ being an older girl. He uses a cane around school and looks so happy and included with all his friends as its more obvious that there is an issue. Whereas with CJ she doesn’t look as if there is a problem. She wanted to be accepted as ok, so I suppose we were a bit slow in accepting it. It has been CJ’s decision not to tell anyone. Nor does she willingly use her white stick, which the visual impairment teacher gave her age 11. She also received an iPad from RNIB which aunty applied for. We paid £40, and we received an iPad that CJ uses daily, enabling her to see her school work. This has made CJ a wiz at technology compared to others of her age group, and to be honest has been the best thing ever as it does everything, she needs it too.
Next year, CJ goes off to college. As she has her visual impairment certificate, she has received a pass to use the local buses for free. We’ve also got a train ticket that further opens up other options for her, so she can get around, when we need to. As a mum I have got concerned that she will be cut off from the outside world and so have tried to introduce her to public transport as much as possible. I do little crazy outings. During the February half term 2023 we took the train to Edinburgh (from Southampton). with the idea that in the future, when CJ needs to adventure further afield she will remember mum taking her the length of the country on a train. During the next few months, I have intentions of taking her over to Europe on the train. She actually wants to ride a bike in Holland, but I’m undecided about that knowing how many bikes there are in Holland, although the tandem might be the answer! The reality often hits me and scares me for her. But CJ seems to cope with whatever is thrown at her. She’s not isolated as she has fantastic social skills but as everyone is so reliant on the car and that’s not going to be possible, so as a mum I needed to open the world up to her. Each time we travel to London, we go by train. It’s CJ’s job to read the underground map when we go, and she leads us. Initially, all the different coloured lines and small print did give us a bit of a problem, because she couldn’t read the maps. But all teenagers have phones now, and CJ is fantastic at technology. She takes a picture of whatever she can’t see and zooms in. No objections about doing that, as she looks ‘sick’ (using teenagers terminology!)
During this journey since age four, we have found out that dad has the same condition but less severe, it just wasn’t diagnoseable when he was a child. Dad can drive with glasses. We’ve also found out aunty has a similar narrow optic nerve! CJ really does have a double whammy of it!
We are about to enter a new era for CJ… college or the work place? Once again, mum is scared. Silly mum. I have been trying to convince myself that CJ needs to accept her white stick. The purpose of the stick is to tell other people she can’t see properly. How is she to expect help from people if she wont use it? I’ve come up with (rather meek) plans to make the white stick trendy. Sex it up a bit. LED lights from Ikea, a coloured ribbon, a bow? This is not easy when its only 3mm in diameter and is a white pole that’s meant to be a white pole! Each time I try something I get told, “Mum, Stop it”, “I don’t need it”, “Mum, your fussing”… isn’t that what I am meant to do? Now I’ve been told by a family friend to “leave it alone, she has coped without it this long, why does she need it?” “Why has she been given it then?”
Then the debates start…
“Is it unfair on other people if she doesn’t carry it?”
“Other people are more likely to help her.”
“She’s less likely to get a door shut in her face.”
Or does it say, “I’m vulnerable!” ???
“What if the bus driver refuses to let her on the bus with a ticket, because she doesn’t “look” disabled?”
Thankfully, CJ is a girl… pink and yellow coats, LED flashing lights work wonders for girls. She has a badge, but wont wear it. She has a hidden disability lanyard, but again won’t wear it… although I think we are warming to the sunflower design, slowly. We are the only ones in sunglasses on firework night. And watching a game of snooker gets quite frustrating so that was abandoned! As for a career, CJ is undecided. In theory she can do anything, except become a pilot, or a snooker player but I think we can live with that. As a teenager, she loves her women’s football and watches every match. We decided watching them at the stadium may be difficult, so we watch them on the TV. She’s found dad’s binoculars useful and has taken an interest in wildlife so who knows what the future holds, but it’s brighter than after we received her diagnosis.
I don’t know what the answer is regarding the white cane. After a lot of debating, I’m told, again to leave it be. She will find her own way, as she has done up to now.
So, If you do have a white stick, and you are out and about… please don’t be ashamed to show them to the world, the younger generation need to see them and get what they symbolise. I don’t know if this is interpreted as ‘normalising blindness’, but as I’ve learnt to accept it’s not anyone’s ‘fault’. Society needs to accept too. And shame on those who interpret anyone carrying a white stick as vulnerable targets.
As you can tell we have found our sense of humour in all this, but it does take a while.
This article has been read, approved, and laughed at by CJ which is an adaption of her real name at CJ’s request.