Luke’s concerns

I am a young adult with autism and c.p who has never been able to speak but I can type.

I am so afraid at state of the world at the moment, I wish to protest at the destruction and devastation that is gong on, just to make money for a few rich people who have too much already.

The animals are going extinct at a massive rate and the ice melting but the rich don’t care because they just move when they have wrecked somewhere. The people left behind are dying of poisoned land and water and that part of the world is lost to the world’s spirit. We have hurt the world’s spirit and one day before we destroy it completely. I hope it destroys us before it’s too late for everything else on the planet.

Luke Bennett

22.6.17

Jackie’s motto

Freedom is achieved

You think you are good and bright… but you aren’t
But you stare at me as though I am odd… you are ignorant
I may look odd and behave different… but I am intelligent
I am an adult now… Yay I am free
I am intelligent… Yay I go to uni
I have a boyfriend… Yay I am in love
I have many friends… Yay I am blessed
My life is rich and full… Can you say that?
Disability does not hold me back
Freedom is achieved.

I live a great life… full of fun and love
I sometimes sit quiet… but that is ok too
I am brave… You find that hard to believe?
I battle anxiety every day… but I am winning
Crazy fun and all of that… what better way to live
Something troubles me… I have friends to hug me
Family close and dear… How lucky am I?
Crushing weights you envisage… they do not exist
Disability does not hold me back
Freedom is achieved.

People think disability is a major problem… it isn’t
Disability is only about limitations… because the world values able bodies
All bodies should be valued… for what they can offer
Freedom is only achieved… when all diversity is valued
Freedom is paramount… trust me it is
Freedom is stupendous… indeed it is
Freedom is awesome… Yay celebration is due
True achievements are superb… I know I do
Disability does not hold me back
Freedom is achieved.

Response to recent article in Holistic Bliss magazine

Adrian wrote:

The article about Delaney and Glen is misinformed and damaging in the use of the term facilitated communication (FC). FC has a very specific meaning, and while what Delaney and Glen are doing is, I suppose, communication that is facilitated from mind to mind, it is not, and I repeat, not, FC. FC is what is described early on in the article, a Facilitator supporting the hand, wrist or arm of the User typing on a communication board. As an FC User I am disturbed by the use of FC to describe telepathy. I don’t want to discredit their connection as I can only make assumptions to its validity but in order to communicate in that way is entirely different to FC.

My facilitator can often guess at what my next word or sentence may be based on context clues, body language, the circumstances and previous letters I have typed, but even if they believe it an accurate guess they will always verify with me that the guess is correct. This is different than a telepathic thought being shared, mind to mind. My facilitator may guess what they think I will say, but not suggest that they KNOW what I want to say. Do you see now the difference? Do you see now, that to use the term FC when talking about telepathy is misinformed or how it could be damaging to those who actually use FC. As an FC user I already face enough scepticism about my form of communication, I do not need metaphysical controversial concepts colouring my communication with even more questions. I would implore Delaney to cease the use of the term FC when using telepathy.

Jackie wrote:

Recently an article in your magazine purported to be about facilitated communication. As a user of facilitated communication, I find this article troublesome. Glen and Delaney are not using facilitated communication, instead they are using psychic telepathic communication. They need to cease using the term ‘facilitated communication’ as they are denigrating it.

Facilitated communication is an alternative mode of communicating for people who cannot speak or communicate independently. Facilitated communication requires the user to type their words and is sometimes called ‘supported typing’. Some users need a lot of physical support, while others gain independence.

Predicting the next word is possible at times. For example, I might say “I want a …” and you can predict a noun fits there. This is because that is how our English language works. If I give you one or two letters, you can better predict what noun I am using. It is not possible to predict a stream of words from one or two letters as Delaney would like people to think.

I am very upset that she has put my communication mode in a questionable light. Tears stream down my face as I write this to you, the editor, and your readers. Yes, listen to my distress. People will doubt my voice if Delany persists on using facilitated communication to describe what she does with Glen.

Maintaining friendships over time and distance

Over the years I’ve had many people I would consider friends at the time. We cared for one another, shared things with each other, made time for one another. Then life happened. Friends moved away, they went to a different social or activity group, they got sick or depressed or simply, we grew apart. When i think of these people they become a fond memory that I think of when i visit certain places, smell certain foods or hear certain songs. I have a lot of ‘fond memory’ people but I also want to have more friends who last through time and distance. Those are the real tests of friendship. It’s difficult to maintain friendships when you cannot simply call them to say “hi”. Once again I curse my inability to speak! If I could pick up a phone just to say “I miss you”, I’d probably have more long standing friends! It’s hard but not impossible to maintain friendships through written words alone. Written words are usually from the soul and take effort so you know they’re meaningful. So I continue this journey to keep my friends as my friends and not just fond memories. (Adrian)

Distance is easy. Time isn’t.

Friendships are very important to me.

Distance is able to be bridged by the means of technology. Emails can go across the world or from city to city. The thing I like about them is that they don’t rely on having a voice. By that I mean not having physical voice. I have a strong voice through my fingers.
I have a heart and I have feelings just like everyone else.

Time isn’t easy. People move on in their lives. I think back to people I was close to in the past. I like to think we could reconnect but it is likely that life gets in the way. I hold the memory of friendships from the past in my heart. I realise that this is life. I celebrate my new friendships. It is part of growing up. (Jackie)

Skydiving achieved by Adrian Kooistra

If you haven’t heard the news about Adrian Kooistra yet, I would be truly surprised. Perhaps you saw the news article in the Sunshine Coast Daily or saw a news item on TV and just didn’t connect the dots. Adrian is a member of EPICC Maleny and, recently, he successfully undertook one of his dream adventures.

At the end of 2016, Adrian wrote about his desire to skydive: “As a guy, I have a wild side … Why should I not go skydiving just because I am in a wheelchair? I want my part of a good life.” When Jackie heard this, she commented that “Adrian is a thrill seeker”. We were all in awe of Adrian and his desire to engage in skydiving. Some of the able-bodied members of the group identified that they would never want to sky dive. They labelled Adrian’s desire to skydive as ‘brave’. Others might think it ‘foolish’ given his disability. Adrian, however, is not one to let his disability hold him back from participating in anything.

The headline in the Sunshine Coast Daily ‘Disability proves no barrier to exhilarating dive’ (i.e. skydive) exemplifies this aspect of Adrian. Please go to https://www.sunshinecoastdaily.com.au/news/disability-proves-no-barrier-to-exhilarating-dive/3151330/ and read the article for yourself, see the photos and view the video of Adrian skydiving.

Everyone in EPICC Maleny is thrilled for Adrian. We want to shout from the treetops: ‘Congratulations Adrian for your tenacity and courage in undertaking this adventure. We look forward to hearing about your next one.’

My Skydiving Adventure
By Adrian Kooistra

Last Sunday I woke up with the knowledge that ‘today my dream will become reality’. I was beyond excited, but equally terrified. I had a mad smile permanently fixed on my face and I’m sure there was a visible manic glint in my eyes. This was nothing in comparison to my poor mum’s panic, and my brother, Brett’s excitement. He would be diving with me. Us boys were keen. As I was being strapped up in the harness, my heart was racing and fluttering, stomach somersaulting and my brain conjuring up some truly ridiculous scenarios. Waiting for the flight was the longest hour of my life. I just wanted to get up there. When it was finally time to take off, I said a quite ‘bye, mum, I might see you on the ground if neither of us die of fright’ and we were off.

Up and up and up we flew. Brett babbling away the whole time and Wayne (my instructor) speaking encouraging calm words of support. They asked me one last time if I was positive I wanted to jump and I just about burst trying to clearly express “HELL YES!” We stood on the edge preparing to jump and it occurred to me, we may all be insane jumping from a perfectly fine plane. Oh well, embrace the insanity!

Falling! or rather tumbling! Oh Shit! Terror gripped my heart as we somersaulted through the air not able to differentiate up from down. Then Wayne orientated us and we were plummeting staggeringly fast toward the ground. What a rush! I felt for the first time true freedom and, in that moment, I didn’t really care if my parachute opened or not. I felt as if I were flying and I wished I were a bird, so I could experience that sensation for the rest of my life. Suddenly, we were flung to a slower speed as the parachute opened, but with a twist. We dropped once more. Stopped. Dropped again, then finally Wayne gave a tug and we slowed again. Thumbs up, we are all good. Spiralling back to the Earth now much more evenly, I saw the crowd gathered below, took in the stunning scenery and my heart burst with joy. I’d done it!

Landing was nerve wracking as I could tell as we descended that the catchers were going to struggle to catch my legs. I felt Wayne tip backwards and scoop my legs up with his own. Impact …. No pain …. Phew! Safe, exhausted and proud as punch! Voices surrounding me. Congratulating me. Strong arms lifting me into my chair, but, all I really wanted was a strong drink.

Dream now realised, I felt a little sad. It was over, but then I realised I can just do it again!

Tyler Davis-Babaravich

When I first heard about Adrian wanting to skydive, I got excited for him and for all of us. It sounded like a great idea. I didn’t think I’d be able to go watch. I was lucky that Dad was happy to take me. There were so many people there to watch Adrian. Even the news people came. The sun was hot. The crowd was excited. The wait was long. Then someone said ‘There they are’. It took a long time for me to see him. He was almost landing by then. The crowd went wild as he touched down safely. I was able to go over to him and congratulate him. We hung around for a bit because it was an incredible experience for all of us. Adrian was so pumped. It was an honour to be a part of his experience. I don’t know if I want to do it, but Adrian inspired me in general to look at my limitations and see how real they are. Well done, Adrian.

Adrian the Thrill Seeker
By Jackie Irwin

Adrian Kooistra is a good friend of mine. Last weekend he did something he had wanted to do for ages. He did a tandem skydive. He did it down on the Sunshine Coast at Coolum Beach. I can only imagine how much adrenaline he must have had coursing through his body. Personally, I wouldn’t like to leap from a plane. I prefer different challenges. But if Adrian wanted to challenge himself, he certainly picked a very extreme way to do it. Well done my friend.

Freedom of information, opinion and expression

Freedom to express my opinion is important.

I deserve the right to express my view of topics of interest to me.

Australian law does not use the term ‘freedom of speech’.

That is an American term.

Instead we use ‘Freedom of information, opinion and expression’.

This rightly allows for Australian citizens to share information and share their opinions.

There are some limitations. The rights of another person or their reputation cannot be breached.

We need to ensure to be respectful of others. (Jackie)

Social Role Valorisation (SRV)

SRV has been a key part of my development the last few years. I’ve realised I’m no longer content to just be a tool for others to form social roles but that I should have my own! Meaningful roles are what gives me a reason to get out of bed each day. Without them I’d be just a shell. I want for every person to experience holding value in their community. For this to happen we need to identify our passions and develop these into meaningful roles. Sometimes I have needed for others to help me in the development of my roles, this doesn’t make it less meaningful but I think more as it also adds value to these people who support me. In this way we all help one another to build the world we want to see! (Adrian)

Anxiety

You’d think to look at me that my physical disability is the most debilitating part of my existence. After all I can’t feed myself, walk, or even bathe independently. I wake up each morning and do nothing but wait all day. But trust me when I say, all this pales in the face of anxiety. I’m not talking about feelings of anxiousness; no that’s a human experience which serves a purpose. I’m talking about finding breathing becomes impossible, your vision Narrows and darkens, fear and anxiousness combine in your chest to create a ball of al consuming darkness, your brain shuts off and your ears are filled with ringing that screams the words, surely I’m dying.
It’s horrific and terrifying to experience true anxiety. It makes physical discomfort and disability seem insignificant.
The only thing that gets through to me is arms wrapped tightly around me, they let me know I’m not alone because all other senses have disengaged, but strong arms I can feel, they anchor me back to reality. This isn’t death, it’s mostly in my head, I’m in no real danger, breathe in breathe out.

(Adrian)

Privacy for people with disabilities

RESEARCH

Convention on the Rights of Persons with Disabilities
– Article 22: Respect for Privacy

Australian Human Rights Commission – Rights of People with Disabilities
– has the right to privacy and confidentiality: personal privacy; privacy in communications; confidentiality of personal records and information
– Has the right to self determination: to make own decisions and choices in all aspects of their life

Jackie wrote:

Privacy is hard to have when you have a disability and are reliant on people to feed and dress you. According to the Rights of People with Disabilities, you have the right to privacy and confidentiality. For me, it means I get to chose what is shared with mum and other people. I want some privacy in my conversations. Reading everything I say is invading my privacy. I can’t speak for other people with disabilities, but this is important to me. I ask that people check whether I want my conversations recorded or shared. Very important to let me have choice. Privacy is my right.

Anxiety

In my life, anxiety is a nuisance. It takes over and ruins things.
Imagine living in a body ruled by fear. It is horrendous.
My legs get like gel and I can’t stand.
My mind screams in anguish help, help.
My body quivers and shakes.
Strategies leave my mind. I am blank.
Deb helps me but sometimes she can’t stop the tight binds of anxiety.
But often I get scared by things that are culled.
By culled things, I mean giants and evil things.
I also worry a lot.
I worry about family and friends and their wellbeing.
Deb is cute when she puts the circle of protection around me. It helps lots at uni.
Deb helps me understand that I can listen and not be hurt.
Dear me, it is a drain to worry so much.
Draining, dreadful, dastardly anxiety.

Children and adults around Australia have anxiety issues.
How sad for our country. Think of the torment they are suffering.
Frank discussions are needed to determine why anxiety is a problem.
Please be kind when people are stressed.
Please, please, please!

Research is useful but not the solution.

By Jackie