Introducing …

Peter RowePoetWriterArtistIllustratorPerformer

Thank you all for coming and thank you for the opportunity to speak to you today.My name is Peter Rowe and I have Down syndrome and other restrictions that prevent me from speaking.

In spite of that, and the challenges and trials I have faced in life, I have become a poet, writer, artist and performer.

I will tell you later about how that was possible. But first I would like to say that events like this are important because they give someone like me the opportunity to meet with different people and allow them to see our potential …and then learn to identify the changes that are necessary in order to assist us to achieve our goals in life.

A bit about me …I grew up on a large sheep farm on the New England tablelands in Northern NSW with my parents, Justin and Betty, and five siblings: Maryanne, Elizabeth, Pauline, Gretta and Justin Jnr. I am the youngest.

As I said, I was born with Down syndrome and other restrictions that inhibit my ability to articulate speech.This was a problem in the beginning as I could not let people know anything because of my inability to speak.

My family had been told I was intellectually impaired and unable to comprehend or make a decision….

But that wasn’t true. I could do all of those things, but I just couldn’t tell anyone, because I could not communicate. How can you expect people to know how good you are inside if you can’t tell them?

I was never intellectually impaired – in fact I have since been tested and have the IQ of an average able-bodied male of my age. I was only unable to speak and unfortunately that causes some to treat people like us as if we have no understanding or comprehension.

I could solve problems and make decisions, and I was able to remember and understand everything that was said to me, but I just couldn’t let anybody know that and it was torture.

I tried very hard to let everyone know how smart I really was inside but it was all lost because it was only on the rare occasion I could get that message through.

I was not able to tell anyone anything I felt and in the end I didn’t even try because it was all being lost in the translation.

We take the ability to communicate so much for granted…

Imagine …

Imagine what it would be like not to be able to speak or communicate with anyone else for a whole day…

Imagine what it would be like to close your mouth and tie it shut so you cannot reply to insults or other things that people say to you….

… and all the time I knew that locked inside was a person able to do all the things that most other people can do, but was just not able to tell anyone.

It is the most awful thing to have to absorb what everyone says to you and not be able to reply or defend yourself. I have been called a lying retard in

my life; I have been called stupid, mad, unable to think, unable to have an

opinion, unable to be able to doanything …

The words are sticky …

I’d like to share with you a poem I wrote about what it was like for me trying to speak.It’s called …

The words are sticky …They stick to my tongue, they stick to my

teeth,

they stick to my voice, and it’s hard to

speak.

They tangle me up, and make me choke,

I so want to speak … and that’s no joke.

I try and I try, I push and I push,

But the words come out all jumbled and

rushed.

I choke on my tongue and sometimes I

spit,

I’m trying a word, but that is not it.

They’re cheeky & sticky, they just won’t come outBut they seem much easier to speak when I shout.I’ll catch them one day when they all run by,And then on that day my speaking will fly. I want you to know – I think, just like you,But my words are all stuck in my mouth, just like glue.But where is the way to unstick all these thoughts?I hope it’s in the Speech Therapy I bought.                                                     

So, what changed all that for me? What was it that was able to ‘unstick all these thoughts”?

Facilitated Communication or ‘FC’

changed my life forever, in ways I could not even imagine.

It was way back in 1987 when a woman called Jane Remington-Gurney first introduced me to Facilitated Communication.

I can still remember how it felt to talk to Jane and to hear that she understood what I was saying.

After I had my first assessment and FC lesson with Jane I cried all the way home with relief that I could talk to someone at last and get my thoughts out. I was 30 years old.

When I was asked if I was happy to continue I typed ‘yes, yes, yes, yes, yes’. I typed the letters Y-E-S over and over. I was so excited by the prospect that I was talking that I got carried away.

I also remember typing “Thank you for helping me talk. The world is a better place for me now.”

My mum cried a lot too when she discovered, through FC, all the things I had never been able to tell her, both good and bad.

And we both cried when I was able to tell her for the first time that I loved her.

… Such a simple thing, that we all take for granted.

Officially, Facilitated Communication is

“a strategy which may enable some people with a severe communication impairment to point to objects, pictures, symbols, words and letters for communication purposes.”

[Disability Program 1997, Department of Families, Youth and Community Care]

FC allows me to tap out my words, letter by letter, on a QWERTY keyboard with the assistance of a trained facilitator, who speaks out my words.

I am also a very good speller.

FC has been quite controversial over the years, and there are some who don’t believe in it and try to restrict its use.

But for me, learning to communicate through Facilitated Communication has been the most wonderful thing that ever happened to me because it has allowed me to tell people my needs and get help when I needed it most.

Facilitated Communication saved my life.

I say this because it allowed me to tell people what was happening in a care facility that I was living in. Without this ability to communicate I would have been as silent as a grave and eventually ended up there, as that is what I wanted to do. I wanted to die, to get away from the terrible abuse I was suffering, along with so many others.Even more important though is that FC has also enabled me to write stories and poems and paint, which has been an important part of my recovery from Post Traumatic Stress.

Art as therapyAfter I came home from that abusive care situation

I was introduced to painting.

It was very hard for me to paint anything happy at first or to use bright colours

because all I saw was dark or red because I was angry at what had happened to me.

But now I am managing to paint in brighter colours and nice styles and it is better for me. The important thing is not giving in. It took me many years to get to where I am now and here I am.

Over the years I have also written lots of poetry and have been involved with a group of other writers with a verbal disability called the Brotherhood of the Wordless.

Together we have performed our works at the State Library of Queensland, at the Queensland Poetry Festival and at Woodford Festival.

I have also been able to write and illustrate seven children’s books, including the four books in the Josh the Robot series.

I love being able to show young people what is possible… for all of us.

Josh is a Robot who is different, but as he receives acceptance from his new friends, he gains the strength to speak out and influence others. The Josh stories are a representation of my life.

I’m currently working on an fifth Josh book, which is set in a library and will be launched in September in conjunction with Disability Action Week.

But NONE of this would have been possible without

Facilitated Communication.

Before FC my life was very narrow and controlled by everyone but me. Yet I still had dreams of things I wanted to do, like everyone else. I had stories I wanted to tell, drawings and paintings I wanted to do, and so much I wanted to achieve, but I just couldn’t get the message across.

Being able to communicate through FC over the past 18 years has allowed me to pursue and fulfill some of those dreams …

It has increased my self-confidence, and it has enabled me to meet and work with some amazing people.

The power of the ArtsI have a deep love of art, writing and performing and they have been an important part of my journey. It has meant the world to me to be able to express myself through all these different forms of the Arts. It is very therapeutic and has helped me to become who I am.

In many ways my art

and my writing have

given me a voice to

speak with; they have

allowed me to express

my thoughts, dreams

and experiences and

given me a way to

communicate my

feelings and share

my heart.

Being given the opportunity to do all these things – writing and illustrating books, painting and sculpturing, writing and performing with the Brotherhood, even public ‘speaking’ – is a journey I never want to stop.

You don’t know how good it is to be able to express yourself after being silent for so long.

However there is one morevery important thing, other than FC, that has made a difference in my life and allowed me to achieve these things… and that is the HELP I have received – from my mother and the rest of my family, and from others in the community, who all help me to communicate, andto work with my disabilities, and who believe in me enough to help me with my various projects.

The importance of HELPI believe that all people with a disability are capable of doing what I am trying to do. We just need the chance to have people around us who will help us to do it.

Thankfully my parents have taken the opportunities that FC presented to me, to stand behind me and allow me to take over their whole lives and do the work I now do.

It is a full-time job for mum and dad to support me. They are both in their 80’s now and they get very tired and sometimes sick. Fortunately with the support and help they get from people in the community we are all able to keep going.

I don’t think parents of disabled people get enough support to do the work they have to do.

with Mitch – graphic designer

with Marcia–editor & P.A.with Adam–support worker & facilitator

Looking to the future• What we need is more education to show people that those of us with a disability can do so much more if we get help. And so …• Facilitated Communication should be encouraged and available to anyone who has a verbal disability • Parents also need more help to do the work that is necessary and get the right assistance from people who really care about the disabled and don’t just see them as a means to a wages cheque.

My work and my destiny is to go out and try to spread the word that we all have talents and gifts that are locked inside us, until somebody turns the key and lets them out

… or in Josh’s case, pushes the right button…

The key for me was FC. It may not be the same for everybody but it is necessary to at least be given the opportunity to communicate.

My message to the community …I would like to say to all of you out there in the community that .... we are just like you, with our own hopes and dreams and the need to be useful where we can. I cannot stress enough that people with a disability should be given the opportunity to communicate wherever possible. That means that it may be FC or it may be Makaton or Auslan or any of the other ways we have to get our message out into the wider community.

We all want people to know that we want to speak or talk or at least have a say in the things we would like, not just accept decisions made for us, which maybe we don’t want at all. Just as it is important for people with disabilities to have a voice and be part of the community in which they live, we also need people to accept us as we are and to be treated with respect. That is what every human being wants, but it is not being done in a lot of cases, especially to the disabled.

Don’t judge us by the way we look or the way we use our bodies, our hands or our feet, and even sometimes our tongues. We don’t want to be like this; we just are, and we have to do the best we can.

Please give us the tools necessary to do our life’s work.

(Some of my friends at the Brotherhood of the Wordless)

We need the support and assistance of people out there in the community to help with opportunities, not only to learn to communicate through FC, but also to achieve our own dreams and goals.

We cannot do it without you.

We need a hand …

your hand…

To parents of the disabled, I would like to say:Don’t underestimate your child’s capabilities and potential… Just look at me…

Give them a chance, and the opportunities they need, especially to communicate.

My chance was a long time in coming, but now I hold onto it with both hands.

To those with a disability, I would also like to say …

I’d now like to share with you another poem I wrote entitled:

“Holding Hands”

Holding Hands (2005)

The hand holding mine gives me strength and support.It gives a reference point of fine control and accuracy

and I am in a maze of confusion without it.

I still know what I want to say in my heart and mind,but it doesn't come out very easily

when the hand isn't there holding mine.

Some say I am using the other hand as a hinge to point more accurately and precisely.

Others say it's the hand holding mine that has the actual message

and that I'm not doing anything but holding on

for the ride…

The sticky, sweaty and slippery film between our hands

speaks of effort and strength

and tiredness

and earnest hard work when we type together.

I am ashamed and elated at the same time

as I watch the feedback from the eyes that are

watching me.

My hand is tight and my muscles so sore,at the end of the conversation with my finger tip.But I know that if I get lazy and stop pointing

I'll be as silent as the grave

and never get to say "I love you"

to the hand that's holding mine.

Thank you for listening.

I hope you’ll join me afterwards for a cuppa and a chat!