The Alien Stare

I have been hesitant to write this post. This morning I ran it across my good friend and he was shocked to hear what I’m about to tell you.

Two weeks ago coming back from the doctors, Mum left me in the car, while she went into the chemist. My communication device needed to be physically tapped (the specialised software sometimes gets “stuck” behind a Windows program so someone has to press on the program on the task bar for myself to gain control with the eyegaze again, so I was trying to get my hand to touch the screen, which is difficult when you have luque rods in your back).

A mother and girl who looked around ten years-old (maybe even older) came to the car parked next to us. The girl looked at me as I was an alien and stared. I’m used to some kiddies doing this (I understand, they’re curious or it’s just what some kiddies do), but what the parent did was unexcusable! The parent looked at me with disgust.

So I stared back at the parent who continued to look at me. Once the girl was in the car, her gaze was fixed on me. Finally the parent instructed the girl to stop looking at me, but whilst reversing out, the parent continued to stare. I wasn’t well, so I just stared back with a little smile (while thinking two words).

I really hate the thought of children being teased for being a little bit different. My nephew was born with clubbed feet and one working lung. You wouldn’t know this looking at him because he does everything what other kids do! However, sadly he was bullied by older kids and hadn’t said anything until recently. This broke our hearts because Mum and I know how cruel kids are. Some bullying events stay for you forever. Luckily when my sister brought it to the Vice Principal’s attention, the situation was swiftly dealt with.

So if you are a parent or guardian of children of ANY age, please make time to sit down to have a chat with them. Explain how everyone has feelings and it’s not cool to stare and tease someone who looks different.

Spontaneity And Pain

‌I gotta admit, this year hasn’t played out how I invisioned it. Sure, I’m still recovering from major surgery in August last year, and I’m still healing (probably for another six months, but in my head I knew that would be a twelve months recovery period.) However, this isn’t slowing me down… It’s my chronic nerve pain that’s interfering with our lives!

Last week after a very bad few weeks of Mr Zappy (I get zappy pain in my leg and foot, just imagine having fierce electric shocks every couple of minutes…. You get some respite from various painkillers but it only last 2-3hrs.) This has become my life this year. Some weeks, especially if Mr Zappy has hung around for weeks and weeks, I get very teary because I’m tired and just want the pain to fuck off!

Back to last week, my friend Francis and I were looking forward to seeing Logan on Friday night. Until the Thursday I had Mr Zappy but was determined to make it Friday night. Francis travelled to Fountain Gate (the closest cinema to me because travelling long or short distances, going over pot holes, speed-humps, braile bumps…you get the idea) can set off Mr Zappy. So Francis kindly did that for me – he “gets it”. So after we had dinner we went up to the cinema, Francis bought his normal – popcorn and a drink and we headed around to the ONE and ONLY lift to find out it was out of order and had been for two days. I was pissed, I’m still very pissed.

This week Mum and I sent an e-mail to Village Cinemas. They swear there was a pop-up last week warning people who clicked on the wheelchair seats about the lift. There was NO pop-up otherwise Mum wouldn’t have purchased the tickets!

In our letter we explained how people with many disabilities do not have any ‌spontaneity‌ as we have to organise workers or friends, transport and for some of us our health is extremely limiting. Earlier this year I had to stay home from my Aunty’s daughter’s 18th little get together because the next night we had Bruce Springsteen And E Street Band. Halfway through On Sunday Mum and I are seeing the gorgeous Adele at Etihad Stadium and I know I’ll probably have Mr Zappy for days after it, but I’m still looking forward to seeing Mum’s face when Adele sings her first note.

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

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