An Occupational Therapist’s Unique Story

I met Sarah Solomon through a recent session to set up Eric Toddler (a Microsoft Surface Pro 4 connected to my Intelligaze Eyegaze camera (with Grid3, which I don’t love at the moment). Anyway, Sarah and I get along very well and have been chatting on Facebook about things.

Yesterday Sarah shared with me a blog post that was published on the MND site, that other therapists, disability workers and families should read.

Sarah’s Story

Inclusion Not Exclusion

Regularly a group of family, friends and I love days like these; good music, good company and good food!

Two Sundays ago, January 22nd, 2017 Mum, Aunty and our close friends were excited to go to the Red Hot Summer Concert at Mornington Racecourse. This was our second gig there with the same promoters. Two years ago we went and immediately were shocked with how they had penned people in wheelchairs into a corner with fences around the small area; totally segregating them and their family and friends from the rest of the concert goers.  This year the promoters had organised a nice shaded tree for people in wheelchairs, but the problem was they were only allowing ONE companion into this nice shaded section under a large willow tree.

So my Aunty and friends went on the hunt for an area which would fit six of us including myself with our chairs and table. After Mum and one very pissed off Aunty exchanged some words with security guards, we ended up setting up camp outside the Men’s Toilets. Lovely!

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We absolutely love going to Day On The Green concerts! They have an area for people in wheelchairs where their family and friends (no matter the amount of people who had come with them) right behind the reserved area! Perfect position! I can see the actual stage and the big screens!

Unlike at Mornington Racecourse!

Two years ago Mum made it perfectly clear to the promoters at Mornington Racecourse we wouldn’t be carolled in the pen; segregated like sheep. We had hoped the promoters had took on our suggestions, but obviously they still have the mentality that people with disabilities don’t have meaningful relationships and would want to go to concerts like these with their friends.

Even though we enjoyed seeing great Aussie legends including John Farnham (I had flashbacks to when I was 10 singing along to Whispering Jack), life was made harder than it already is because we didn’t have adequate shade, we couldn’t see the large screen (when John Farnham was on some of my friends and I went right in front of the screen behind us – then we had a front row view!) and we sat was right beside the MALE TOILETS! What the!!

My family, friends and I hope by writing this post, the promoters will take notice of our suggestions and recognize the need to change their disabled seating arrangements and allow people in wheelchairs to sit with their group of family and friends and not be carolled in the corner somewhere…excluded!

Eric and I

Eric and I first met each other in February 2010! Using my eyes to type was something I had actually envisioned about for many years, even before “eyegaze systems” were invented. So when I trialled an Intelligaze from Alea Technologies supplied by Zyteq suddenly my whole life changed!

Soon after buying Eric through fundraising, I decided to take one of my lifetime dreams and turned it into a reality. That was becoming a music journalist which has turned myself into a respected interviewer. I created the site Gigs ‘n Interviews and now music agencies and major companies regularly ask me to do a feature on an artist or band. Most agents now forget I have a disability, and this wonderful feeling can’t be described! Eric has also helped me to self-publish books including several children’s books and he helps me to obtain my websites.

However, Eric and my relationship hasn’t been all smooth sailing! It took us a while to figure out how to work together. Afterall he is male and has moods occasionally! For a while there, the lovely Tracey at Zyteq, Lars from Alea Technologies and I were constantly e-mailing each other. Lars even took the time to do several remote sessions with Eric and I myself, but these days I can figure out issues myself (often suddenly thinking “Intelligaze must need updating”) and after the update Eric behaves.

Eric’s had a hand in my addiction to Candy Crush and more importantly keeping in touch with family and friends online. Last month I started Skyping with a webcam! Now that’s pretty cool (especially to chat to my friends)!

It’s my mission to raise funding for a portable eyegaze communication system (aka Eric #2).  Family, friends, music colleagues and I have started to brainstorm ideas because I’m not the kind to ask for money without working for him. Since last year I’ve played lotto frequently, hoping I win just enough to purchase him!

Thinking of having Eric #2 excites me and the people around me because it will mean no more headaches from switching, no more fatigue from switching, I’ll be able to gossip faster (I mean talk faster) with my girlfriends when I’m out ‘n about, Eric #2 and I could go away together for long holidays and life will become so much “awesomer” with Eric #2!

Having Eric in my life has enriched living and the lives of family and friends. Even though like any couple we fight sometimes, but we always make up to work together harmoniously.

Published on: Zyteq‘s blog

Just Because….

Just because I have a severe disability

Doesn’t mean you have to speak loudly and slowly,

I comprehend everything you say.

Just because I have a severe disability

Doesn’t mean I’m unable to communicate with you,

Simply look at my computer screen; you’ll see what I’m saying.

Just because I have a severe disability

Doesn’t mean what I do in my life should be seen as spectacular and extraordinary,

I’m just doing what other people do.

Just because I have a severe disability

Doesn’t mean I should be treated like I’m isolated,

I lead a full life with cherished relationships and wonderful adventures.
Just because I have a severe disability

Doesn’t mean I don’t have the same thoughts, feelings and aspirations as you do,

I think, feel and aspire like you do.

Just because I have a severe disability

Doesn’t mean you can treat me like a child,

I’m an adult who makes her own decisions.

Just because I have a severe disability

Doesn’t mean you should assume anything about me,

My exterior fools most people.

Why I’ve started Through My Eyes

As an intelligent 39 year-old, I have had lots of experience with human interactions. Some awesome, some not so awesome…some downright cringe-worthy!

What’s different about me you might ask? To many I’m just a woman with the same feelings and emotions as you. These people see me as a person. Others immediately see my severe physical disability; how my arms tense up, how I rarely dribble due to lack of muscle tone and the big one – how I’m non-verbal! I communicate through eyegaze systems; I have one for my trusty Windows 7 computer ie Senior Eric and a portable system Baby Eric which is a Surface Pro tablet for when I’m out ‘n about. (Hopefully this year I’m upgrading to a Surface Pro 4, getting rid of Microsoft’s not so finest platform Windows 8). Anyway, you get the gist; I love to talk even though my own voice doesn’t work, thanks to my brain sending out muddled messages to my muscles.

I live at home with my beautiful Mum and our gorgeous furbabies Shadey and Roxy. My Mum is my main carer, advocate and my world. We’ve been through it all; mainstream schools, fighting Board Of Studies so they allowed me to complete an exam over days (at that stage I used a headswitch to type which was awfully slow and tiring), fought to get into uni doing a dual degree (I lasted six months due to not nice lecturers), finally I ended full-time at Tafe with Mum’s support and encouragement. Mum’s my rock, she’s always understanding. I have chronic pain issues which seem to get worse as years pass by, but Mum always understands and even with her mising out on things I never forget what she’s sacrificed (she always assures me she loves being my Mum and wouldn’t ever desert any of her four children). But then, in other areas we certainly make up for this. We love going to concerts, especially Day On The Green gigs! We have some stories about our concert adventures and holidays! I love my Mum, I have no doubt that this is the reason why “Mum” was my first word I verbalised when I was around three years-old, and still is the word I can easily say.

For showers and to get out ‘n about, I have two carers. Currently my main workers are on well-deserved holidays, so for my shower shifts we’re getting fill-in workers. This was the main reason why I’ve started this blog.

Mum always explains to a new worker (because I’m in bed still) that my disability is only physical, “mentally Jacqui’s as bright or even brighter than you and I!”. Some people “get” it, but unfortunately some don’t. Several times now I’ve had a worker who doesn’t “get” it, she talks to me in that high pitch sing-song voice, but speaks to Mum normally. There’s a way to wash my hair without “drowning” me, but this lady’s common sense doesn’t kick in. Whereas this morning I had a lovely worker (who I’ve had long ago) and she did everything with common sense and listening to me by watching my eyes. Most importantly she showed me dignity and made sure she covered my body with a towel when she was drying me. This was bliss! And because I got a little bit sunburnt last week, I pointed to my moisturiser. She put it on my body. Unfortunately other workers haven’t picked up (or just ignored) my eye cues. This morning’s carer joked about not drowning me and said how she’s told off other workers who’s done so to other clients.

I understand most people haven’t come across someone who’s severely physically disabled and non-verbal who’s not intellectual disabled, but in the year of 2017 agencies should educate their staff to at least uphold everyone’s right to dignity.

So if you have a physical disability, I encourage you to write your stories about workers (the great, awful and ugly). Maybe share this blog on your agencies’ page or e-mail them. Your voice is important!

Thanks for reading!
Jacqui