Eyes and Independence
Over the last couple of months on social media, a parent shared her concerns and worry following a rejection from NDIS for her young 2 year old son who has ‘albinism’. Another parent has recently been told that her 10 year old son won’t qualify for NDIS. This week there has been discussions about ‘consumables’ and the decision makers unsure about allowing ‘self managed’ families to buy the sunscreen, hats, sunglasses…really?
Questions that have come to my mind following this issue have included:
As an experienced specialist teacher in vision impairment, early childhood and Orientation & Mobility, I would like to share with you some insight into vision, albinism and the impact it can have on a person.
“The vision loss is secondary to the discomfort and pain caused by glare. The desire to squint and shut your eyes always wins, and it is never quite enough”. (Annette Ferguson) Continuing on, “Outdoors and brightly lit environments can be very uncomfortable for a person with albinism. Sometimes too much glare can result in a total white-out,and reduce the ability to identify objects in the shade”.
"The wearing of sunglasses and sunscreen are non-negotiable, basically a requirement for all children and adults. The cost of these items for quality and protection can be higher in costs and the need for re-application of sunscreen results in the need for additional supplies. Many families of children with albinism are also required to invest in additional clothing or longer sleeved uniform items for the protection of their skin".
Vision develops from birth along with all other areas of development. Vision is a learned process. The importance of early intervention for these children with albinism cannot be understated. Learning begins from day 1 and children with albinism need guidance in enhancing the learning to ensure they too will move along achieving their developmental milestones like their peers. It will be a lifelong learning process.
Transition from the early years into school, from primary to High School, from High School to University and/or the workforce are all periods of high stress and the need for support. This can include Orientation and Mobility support, adjustment periods that require reassessments of ongoing needs, new Assistive Technology and/or updated equipment, in order to keep up to pace in their local community areas. Timely supports for the person with a vision impairment can increase their independence enabling them to socially and economically participate in their community.
Please consider the uniqueness of a person with a vision impairment, acknowledging the need for supports and in making the decision to grant approval for funding supports (NDIS on this occasion), consider the child/person on an individual basis, which may not always match generic criteria in the process.
EYES AND INDEPENDENCE
13th June 2019
International Albinism Awareness Day
The below article, a personal reflection, was written by Fiona Woods, Chair of Blind Citizens Australia (BCA)’s National Policy Council, to mark this day as well. It was posted to a VIP List in Australia.
"I am thrilled that the United Nations has endorsed World Braille Day, to be celebrated on January 4. If it wasn’t so soon after Christmas and New Year and just before two of my children’s birthdays, I would host a party for it. People who attend lots of BCA meetings will know that I get excited when I receive a Braille agenda or annual report and that I use my frame and stylus to take Braille notes on whatever junk mail I can find of the appropriate thickness. To me, Braille is not just a means of communication and the key to literacy, it is one of the threads running through my life.
My father was totally blind, so Braille was always part of our home. I understood from a young age that three of our bookshelves had been specially constructed to hold the tall, heavy volumes. They are all now full in my own home. We used Dad’s old Braille books to press leaves and, as a child totally blind by two myself, I was intrigued by all the os and owls at the end and beginning of each volume. When I started school, I found it strange that suddenly there were Braille labels at home on things like chairs and tables and plates. Now I know this was to give me the experience of feeling words, in the same way sighted children practise reading signs while walking down the street. I soon started reading whatever I could. The RVIB Burwood had a map of the Melbourne railway lines, where I learned to spell suburb names. There was a Braille globe of the world, where I learned about many countries which no longer exist. Once a week, we were allowed in to the library where I longed to find enough books for children. I joined the Braille Library at seven and was well in to my first book, “The Lion, The Witch and the Wardrobe” on the drive home. It was later a treat to walk through aisles and choose whatever you wanted to read, and today I enjoy searching Daisy titles in the same way.
I read Braille. Through school, although cassette tapes and typing became more prevalent. Braille enabled me to do maths, French, Indonesian and music. Although after school I have no more Braille texts, I relied on it to join in the choral and debating societies at university. I soon worked out that taping lectures I had already attended meant sitting through them twice, so my slate and stylus became indispensable. Using a Versabraille, an early form of Braille note taker, I was able to complete an honours thesis in history and, for the rest time ever, be able to read back what I had written before handing it in.
Once I finished official study and started work, there were a lot fewer Braille pages in my houses. Once I became a parent, I largely switched to audio books. It is hard to reach the pages over a pregnant belly and, if you sit down to read a book, it is obviously an invitation for a toddler to sit on your lap. I read small Braille books to my children, some of them given to me by other blind parents. We play Braille dominoes (they belonged to my Dad), Braille Scrabble, Braille Monopoly and Braille cards. I used Braille to read a poem at our wedding and a reading at my father’s funeral. For my birthday the following year, my sighted sister worked out how to Braille me a birthday card, which was a special connection I thought I had lost along with my father. Since then, I have received Brailled messages from my preschool children and used it as a way of introducing myself and blindness to school classes and teachers. As a volunteer breastfeeding counsellor, I used Braille. Booklets when talking to mothers over the phone and Braille notes to keep records and lead meetings. Any time I have to write an article or give a speech, I write it out in Braille first. The kids always comment if they see too many lines of the sign for for (all 6 dots are used as a form of crossing out, so that whatever was written is erased, not subtly). I have recently acquired a modern Braille note taker and thought my Braille writing skills might be rusty, but it is so much quicker for me to write on it than to speak or type. Only now that I can verify what I have written in Braille will I trust online banking or shopping.
Braille used to be a kind of secret language. It was surprising when the Sports sang a song in the ‘seventies with the line” “I’m not blind so I don’t read Braille”. Things have changed. There is now Braille on some expensive skincare, on some important medications, in buildings and playgrounds and at museums. There is an approximation of it on our money. Blind children today can read things in their environment in the same way sighted children always could. Of course there is not enough of it, but it is a start.
These days, the only Braille that arrives at my house is from BCA (thank you!), Centrelink and, with insistence, the NDIA. Braille is still everywhere in my life. It is my shopping lists; my records of my passwords that no-one else can read; it is the random phone numbers I can later never find and the appointments I need to keep; it is my favourite recipes which I copy down if I think I will use them again and it is my endless to-do lists. This is my personal reflection and I hope many of you have your own. Braille has enabled me to study, work and participate in my community.
I know that not every blind person can use Braille. Some blind people probably don’t even like it. Many blind people find ways of doing the things I have talked about without Braille and I applaud them for it. For me, though, without Braille my life would not be what it is and I hope you will join with me in celebrating World Braille Day".
Kerri Weaver is a passionate and caring service provider. She loves sharing her knowledge and skills to supporting those with vision impairment and additional disabilities. Kerri has worked in the field of disability for over 30 years. Her experience includes working in Tonga with a specialist team on multiple occasions.
In growth, through play, and when reading, we learn...
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