Sunday, 2 December 2018

Blog 110 - My Coming Out with my Visual Impairment

Written for the International Day of Persons with Disabilities 

International Day of Persons with Disabilities (IDPD)

On the 26th of October I went to an event at the Brisbane Convention & Exhibition Centre to help celebrate the 30th birthday of the Community Resource Unit (CRU) at their, Inspiring, Connecting, Acting for Change: 3 Events to Mark 3 Decades.

Two of the presenters were from Vancouver, British Columbia in Canada. I had met these two presenters, Norman Kunc and Emma Van der Klift the previous night at a dinner, so was looking forward to what they had to say. The title of their presentation was ‘Being Realistic Isn’t Realistic: Discovering Potential, Realising Dreams.’ 

Norman was born with cerebral palsy, and Emma, autism. Norman's story held my interest as he fought to attend his local mainstream high school after being in a segregated primary school, and then he went on to university. He told a story about doing everything he could growing up to not be disabled, and then acting like he wasn't disabled when he was in college. This struck a chord with me as that has been my life with my craniofacial syndrome, my visual impairment, and to some extent even my anxiety and depression. And then he made a comment that really resonated with me. I did not write down exactly what he said, but what I got out of it was that we shouldn't be embarrassed about our disabilities and that society needs to accept us as we are, because we are a natural part of humanity. We have the right to be disabled. And as we are a natural part of society, our accessibility needs (which aren't 'special needs') should be accommodated.

This video has the story Norman told and his thoughts on disability being a right and why he thinks this:

Now the reason why I came home with that particular point that Norman made, was that for the last few months I have been undergoing a change in my thinking about my visual impairment. Since writing my children's book Ride High Pineapple, I have been happy to talk about my facial difference, and my anxiety and depression. But I have never spoken about the severity of my visual impairment. I've lived with my visual impairment since I was 9 years old when during surgery I lost the majority of the sight in my left eye and a lot of the peripheral vision in my right. In my right eye, I only see out of a section, similar to a semi-circle (called a hemianopia), I am colourblind, have no depth perception, and also short and long-sighted which I need my glasses for.

If you look at the circle on the right, it is similar to my right eye:

If these are my eyes, I only see clearly out of the white part.

Growing up I wore glasses and had some assistive aids, plus sitting up the front of the room, in school. I was bullied about my facial difference and for wearing glasses. In high school I sat with my friends, which wasn't usually at the front, so I taught myself strategies for my lack of eyesight, particularly the skills of listening and remembering what was said and copying from my neighbour. I learned that I needed to turn my head a lot to see what was around me, I had set pathways and knew my way around familiar places, and was always super careful when crossing the road. If I bumped into people I apologised, and when I ran into objects or fell down, I always hoped I wouldn't get too seriously hurt. Having bruises or scratches was normal. My most serious accident as a teenager was when I rode into a car on my bike when they came out from a side street and I was going really fast, and they didn't come into my view until it was too late to go around them.

It was devastating at the age of 16 when I was told by my ophthalmologist that I would never drive. A life of dependence was in front of me. And over the years this would wage war in my conscious mind as my life, career, relationships, activities and participation in society, were affected, and not by my own choice. I will never know what it's like to go for a drive on my own or make a split second decision to hop in the car and go for a walk at the beach. Unless I go for a walk on my own, I am always surrounded by people. I need a driver. Now I am not saying this for pity, but just for you to have a glimpse into my world.

After my final surgery at the age of 18, society deemed me acceptably 'normal' and I generally fitted into it without too many comments on my appearance.  That feeling was amazing and no way did I want to ruin it by having something, except for my glasses, that showed I was visually impaired.

Because of my vision and the social anxiety I had due to my craniofacial syndrome, I stayed in the cocoon of one school, as a teacher, for 25 years. I knew the school environment, I had a way of setting up my classroom so that I didn't trip over things, though it still happened, and on playground duty, I wandered the area the whole time so I could see what the children were doing. Teachers and the principal knew to cough or speak when they came into my classroom. I lived close to school so I could walk or be driven. I never told the children how poor my vision was - I tried to act non-disabled. I don't regret being in the one school as  I taught some beautiful children and was able to influence the community, but sometimes I wonder if I had taken a risk, where would my life have taken me?

Since leaving teaching 4 years ago my path has widened and taken me into entirely new places - and often on my own (something I am not used to). I am involved in new groups and have been invited to speak at a variety of venues. Now with my visual impairment, I have encountered some issues. One is travel as I only feel confident on trains as I cannot read street signs and the train tells you where you are; two I've had some stumbles, near falls which could have seriously hurt me, and falls. I continually bump into things and people, and people rushing past time have given me scares; three, I cannot read menu boards so only go to restaurants that have printed menus or if I am buying takeaway I will buy the same thing each time; four, if I have the option of using a machine or talking to a person for ordering, I will use the person. And five, when going out, particularly where there are crowds,  my anxiety levels have become heightened. 

After hearing Norman's words of wisdom I made the decision which I had been contemplating for a while, to see if I was eligible for a white cane. And after making one phone call I found out I was.

My trainer from Guide Dogs came to my house this week and we began the training. As I stood on the footpath with the white cane in my hand, a mixture of feelings coursed through me. These were excitement, to embarrassment to wondering what the neighbours thought. As I am still in the training phase I cannot take my cane out in public yet. That is going to be another set of emotions.

Obviously, the main reason why I am going to use my cane is my personal safety and mental well-being. I am getting older and I do not want to keep falling over things, and running into people. I am hoping people will now give me space and I will feel obstacles that are in my way. I may even be able to order something new off a menu board as I won't be embarrassed to say I can't see it!

Lots of people have been telling me since I announced my news, that they knew I had some type of visual impairment because I couldn't drive, but they didn't think it was too severe. Others have said they didn't know I had a visual impairment. These comments tell me that I did a great job of hiding my disability. 

But now it is time to stop pretending I can see when I can't. I kind of feel like I am coming out with my visual impairment, like someone who comes out as being gay. I am telling the world, yes I cannot see very well, I need help, and that is okay! So thank you Norman Kunc for telling me it is my right to be disabled, and Happy International Day of Persons with Disabilities. :)

To read more articles on difference, disabilities and diversity go to:

Tuesday, 10 July 2018

Blog 109 - My Testimony

I was asked by my home church, Bray Park Community Church, if I would like to have my testimony videoed to be played during a church service. I immediately said yes as I felt God wanted me to. It was very difficult to condense my life into 500 words, and as it was I wrote 600. I pray that God will use my testimony for His purposes. This is what I said:


Hi, my name is Jenny Woolsey. BPCC has been my home church for a few years now and I am a part of the KYB group. I would like to share with you my faith journey. 

My story begins in 1967 when I was born with a rare craniofacial syndrome, called Crouzon syndrome. To put it simply, the bones in my skull and face stopped growing too early giving me an unusual appearance. 

I was a shock to my parents but loved and wanted. As a baby I underwent life-saving skull surgeries. Growing up I had friends and was happy, but my childhood was hard. Looking different meant dealing with prejudices, constant stares and comments, and physical and verbal bullying. I also had a lot of medical appointments. We attended church and I enjoyed going to Sunday School where I learnt that Jesus loved me and I was special. (My favourite song was Jesus loves me this I know, for the bible tells me so...)

At the age of ten I gave my life to Jesus at a beach mission. It was a few months after I’d endured a horrific facial reconstruction where I lost a lot of eyesight resulting in a permanent vision impairment. (This would mean I would never be able to drive,) I remember vividly the happiness I immediately felt. 

High school was difficult due to bullying. Caring friends and teachers, being in the Inter School Christian Fellowship and going to youth group helped me. Even though I loved God and I knew he loved me and was with me, I struggled with anxiety and a low self-esteem. I often felt mis-understood and tried to show people that I was more than how I looked. After school finished I underwent another traumatic facial surgery, which I only got through by clinging to God and listening to Christian music. I then studied to become a primary school teacher and came to Strathpine. 

My first marriage was abusive. My husband claimed to be a Christian and we attended a few different churches around Pine Rivers. After years of domestic violence, and in the deepest black hole, and suicidal, I cried out to God for help. He answered and provided an escape route. I should have been happy, but I wasn’t. I was really angry and turned my back on him.  

It wasn’t long after my split that I met a man who protected me and loved me for who I was. Later on we recognised it was God who’d brought us together. 

We married in 2000. I became pregnant with five babies but only three were born. My first two children having my syndrome, and my third with Down syndrome and a heart defect. I struggled with more anger and post-natal depression. 

Along with teaching, my life became consumed with paediatric doctors, therapies and many surgeries. My husband and I had little support and we decided to go to church, where we found what we needed. God also drew us to himself and we both reaffirmed our faith through baptism in 2008. I decided then that I would never turn my back on God again.

The stress of family life and the classroom increased my anxiety and depression. No amount of praying before going to school would ease it. God dealt with this situation by closing the door in 2014, on my twenty-five-year career. This hit me hard and I felt lost. It was then that God brought me to Bray Park Community Church where I have found friendship and support. 

I now work part-time as a tutor. I also write children’s books, and volunteer as a DV chaplain. This allows me to care for my children and my husband whose health has declined. 

I hope in some way that I have encouraged you with your faith. God never promised us life would be easy, but he did promise that He would always be with us, helping us through the tough parts, and this I can attest to.

Photos Included for my Testimony

Me as a baby. 1967/68.
Me in kindy
After my first major facial reconstruction, and just after I’d accepted Jesus into my heart. Photo taken January 1978.
Before my final facial surgery in 1985. I was 18 years old.
Graduating with my teaching diploma. Photo taken early 1989.
My second marriage. 2000

My three children. Photos taken 2007 and 2017.

My children’s operations
Our baptism. 2008
My books, 2018