All my life I have taken the fact that I can speak and be understood by most people as a standard, given thing.
I once had laryngitis for a few days and was advised not to use my voice in case I did damage to my voice box. I recall that it was a frustrating time and I felt isolated and left out from what was happening around me. Fortunately my voice returned, and the frustration faded, never thought much about again.
A few years ago I became aware of the existence of an extraordinary human being namely, Janelle McMillan, or Nell, as she is known to her friends.
My friend Desma is a graphics designer and she was working with Nell to make a calendar to raise funds for the National Breast Cancer Association.
When Desma told me that Nell was non-verbal and used a wheelchair, I wanted to know more about her.
I had heard about cerebral palsy and recalled meeting a young man in a wheelchair who communicated by pressing letters on his computer which generated sounds. I met him at the opening of a Group Home run by St Giles in Launceston. I was fascinated by his means of communication. I was also appalled by the female politician who asked him a question and then moved off before he had time to respond via his machine.
I have been intrigued by technology all my life and programmed accounting machines, mechanically and electronically before computer systems becoming available to small businesses. I have owned a computer or laptop since they became affordable for use in a home. In my case, ‘affordable’ often meant giving up other pleasures so that I could buy the latest IBM when it became available.
I lost my mother, my aunt and many friends to breast cancer, so I was keen to support this person who despite many negative things going against her was able to use her time and creativity to help others.
I met Nell ‘in person’ when Samuel Johnson rode his unicycle into Salamanca Square to end his epic ride around Australia to raise funds for the Love Your Sister foundation.
It was an unusual experience for me. Nell’s cereal palsy makes her body jerk around uncontrollably, the sounds she made were unintelligible to my unaccustomed ear. I knew she was intelligent because we had corresponded via the internet.
I so badly wanted to connect with this incredible human being and yet I found myself in the very unfamiliar territory of not knowing what to say or do that would convey what I felt . I was impressed by her art and fundraising work.
I look back on this now and am very embarrassed at my ignorance. There is nothing at all wrong with Nell’s hearing – I should have just told her what I felt.
Instead, I did what I have done all my life when out of my depth, I talked way too much. I am sure she must have thought I was a complete twit!
Nell has observed that verbal people often waste their gift by talking about not much at all.
Fortunately for Nell, Sam arrived, and she did not have to listen to my babbling for long. Sam and Nell connected well, and Nell went on to create some artwork for a calendar to raise funds for the Love Your Sister Organisation.
I follow Nell on Facebook, and we communicated via FB messenger. Over the years I have enjoyed seeing how she has been able to make a positive difference in many people’s lives. I find her rather inspirational.
When I asked Nell if I could write a blog about her and how technology has enriched her ability to communicate she agreed. I asked her if I should send her some questions about the sort of things I was interested in covering . She responded by sending me her unpublished autobiography.
I have been blown away by her book and sincerely hope that she manages to publish it.
How do I begin to do justice to someone like Nell?
I have learned the following about my friend.
When Nell first went to school, she attended a school for disabled children and believed that when she grew up, she would grow into a non-disabled person.
In her book, Nell talks about when she first joined Brownies:
“On the first night, I remember that there were about 30 little girls in brown and yellow uniforms running around everywhere. That was overwhelming for me at the time because they were extremely noisy. I was sitting in the car looking out of the window in amazement at all of these little girls. I didn’t know what to think. I haven’t been around lots of able-bodied girls before.
There were three steps to walk up to get in the hall. Mum took my stroller to set it up in the hall and then carried me in. She put me into my stroller. Bookoola who was the brownie leader of the brownie group called all of the girls into a circle, she introduced Mum and I to the group. Bookoola explained to the girls about me having Cerebral Palsy. The girls were not frightened after Bookoola gave her pet talk to them. Their look on their faces changed from being frightened of me to being very welcome of me.
After that, the girls used to fight over who was going to push me around in my stroller, and they even got upset when I wanted to crawl around the floor. All of the girls would make a big fuss of me. I think that it was maybe because they hadn’t known anyone with a disability before meeting me.”
I think this epitomises how important education is and how we should ensure our children understand about people who are different, non-verbal people in particular.
When Nell was nine years old, her father suffered an aneurysm and was severely disabled. Her father moved into a facility in Victoria, and his family no longer had anything to do with her. As you can imagine this was a hurtful and confusing time for her.
Her mother moved in with an old friend who had recently become widowed. By all accounts, Nell’s life was not much fun at all.
Nell’s book begins with this very appropriate sentence:
“Fuck you, Cerebral Palsy! You won’t get the better of me. You might have control of my body, but I have control of my mind.”
This amazing mind is what Nell has used to make the world a better place for many people.
Nell initially used her artwork to cheer up a friend who was battling breast cancer. She then went on to make Breast Cancer Awareness calendars that are sold to raise funds for the National Breast Cancer Foundation.
Nell creates calendars and artwork for other organisations that are important to her.
Every year she supports the Leukaemia Foundation with either a head shave or wild hairs style and colour.
In 2013 Janelle McMillan, Nell won the MAIB Disability Achievement Award in the Tasmanian Community Achievement Awards.
She has written two children’s book about being in a wheelchair.
Currently, she manages the following Facebook pages:
Nell uses this page to empower non-verbal people by changing verbal people’s attitudes. Nell believes that ‘everyone has a voice’ and encourages people to ‘speak your mind and share your stories with this community’.
Nell uses this page to raise awareness of breast cancer.
The Fairies of Pink Hope which is in Hobart, Tasmania
Get Behind Down Syndrome Queensland Nell’s delightful artwork is on tee shirts for sale to raise funds for Down Syndrome Queensland
My biggest take from Nell’s book is the fact that we need to think about how we react to different people.
Her book has many amusing stories of her escapades at Cosgrove High School. In particular, I enjoyed the Wheelie Aware Week and her story about the First Aid Short Course she undertook.
There is so much more to this young lady than the person you see in the wheelchair.
Another quote from her book:
‘I might have a lucky Cerebral Palsy card for life that has taken hostage of my body and voice.
It hasn’t stolen my brain, spirit, sense of humour, passion and giving love to others that have been dealt a rough deal.
Everyone has battle scars in life, but it is how I choose to use mine.
Self-pity won’t get me anywhere.
I know that my life is different from other people’s lives due to my Cerebral Palsy.
Sometimes I do think about if I had a functional body and what I would have done with my life, but it is called life.’
Just because a person is non-verbal does not mean they lack intelligence.
If you are fortunate enough to meet someone who is non-verbal or in a wheelchair. Do yourself a favour and take some time to get to know them. Speak directly to them, and whatever you do, do not pat them on the head as if they were a puppy dog.
If a non-verbal person has a computer to communicate with, be sure to give them enough time and attention to write a response to your questions.
Nell communicates via email and messenger by using her computer. That sounds so ‘normal’ I am sure.
However, Nell is unable to operate a laptop or computer like most of us do. In her own words, this is what she has to do to operate her computer:
For the last 22 years, I have been operating a standard computer in the same way.
I use a joystick for the mouse that I hold between my legs.
I move the joystick around with the side of my hand.
I have a switch that sits behind my head that I can press to operate the mouse button.
I type through an on-screen keyboard called Wivik.
Whoever invented word prediction will always be a legend in my eyes. This legend has made my life much easier when it comes to typing. It doesn’t have to be fancy or cost thousands of dollars for a computer to be able to be creative and get messages across to people.
When she was at High School she communicated with a laptop computer that spoke and a board with letters on it that spelt out the words.
This is Nell’s preferred way of communication:
I try to say a sentence by saying one word at a time. I use a communication system through spelling out the word when people get stuck on a word that I want to say. I say each letter for the word that the person is not able to understand, if the person still can’t work the word out. The person breaks the alphabet into two halves A to O and P to Z. They ask me if the letter is in the first half or the second half of the alphabet, I say which half that I want. The person says each letter slowly until I say yes to the letter I want. The person would repeat this process until I spell out the word. People who have been around me for a long time can understand me quite well.
In her book, Nell talks about how she taught herself to write:
I was the one who worked out how I could write and draw on the floor.
I can’t write or draw at a table. I think that I was about 8 or 9 when I wrote my first sentence. I wrote, I went to School in front of Mum, but I was on holidays. I showed my family and they were thrilled.
The teachers were amazed that I could write when I went back to school.
Learning how to drive my electric wheelchair took a bit of time, but I got there. I went to a rehabilitation centre in Adelaide to be assessed for where I could use the joystick the best, and that was in between my legs. Hobart’s rehabilitation centre wasn’t set up with all of the computer gear to do assessments that Adelaide had back then.
I think that one of my most significant achievements is being able to use a regular computer through the joystick and on-screen keyboard. It has given me the power to create beautiful artworks and to fundraise for different charities.
I have a passion for being the best that I can be.
It gives me a huge kick when I am helping other people through my fundraising. There is no point in feeling sorry for myself.
Recently Nell learned from a physiotherapist that she had pulled all the ligaments in her knee and leg because of the way she sits on the floor to write.
She has been advised not to sit on the floor any more if she wants to be able to weight bare and walk with assistance.
This means that she will no longer be able to write or draw by hand because she cannot write at a table. Nell believes that walking and weight baring are more important to her than drawing on the floor.
With her usual attitude she has responded with:
Getting old is a bitch, lol. Shit happens and it is a not major illness. There is always Facebook and Email for talking to people and sending artwork through to people.
Thank you, Nell, for allowing me an insight into your life. May you continue to give a voice to those who cannot speak bring lots more oy with your artwork.
Well done indeed for making your own life a life worth living.