So I have started a blog, what now?

Okay, so I have started a blog ... What for? Who would possibly be interested in reading my words, hearing me rant, whinge, complain, and generally vent my overly opinionated opinions... As I write this I am listening to my boisterous, loud, mr five year old sink battle ships, fight star wars characters, and generally entertain his imagination in the bath.

So really i have no idea what this will morph into, but for now, it will be my very public diary, and a place to vent, rant, and express my own opinions on many things.... to get started, and so people bored enough to read this can know more about the author, I will paste an audio dialogue of a paper I wrote for a presentation for a government and NGO forum about a year ago, although it's a little bland, as far as my usual standard goes, its still fodder for you the reader, if I even get a reader :) ... Through this, you will learn more about me, and hopefully it will spark your interest to keep reading my rantings...

to set the scene, it was a stream on communication, and meeting evolving needs with technology, some won't make sense as it refers to visual slides and prompts, but I hope you enjoy nonetheless...

Hi, my name is Lisa Lehmann – and if you are in this stream, and can’t be challenged on a Monday morning, well sorry, cos I do hope to challenge your thoughts, and perceptions, generally and professionally.

Can I ask you all to take a piece of paper or something to type your name on, now write your whole name backward.

Did that feel strange; was it difficult – did you feel challenged?

   That exercise is supposed to stimulate other parts of the brain.

Ok so first off I will share a little about myself, and my life. Then I will talk to communication methods, ways and means, by this I mean verbal, non-verbal, and technologically generated communication. I just want to say from the outset I am not the academic in this stream, that's Jane; I am just here to talk about my experiences with communication as an end user.

I would like to firstly recognize the people who cannot be here today, and I dedicate this presentation to those in a less fortunate place than us here.  In the hope the world can one day, be a barrier-free world full of love, acceptance, and peace. I also acknowledge those who have gone before us in fighting the good fight in creating a real and valued life for themselves or loved ones. 

So now I will attempt to sum up 34 years of living.

My life journey started in chinchilla – I was the youngest of 4. I was a healthy happy baby and toddler from all reports, mum started noticing when I was about twelve months old I used to go blue around the mouth as the day went on, it was discovered I had a hole in my heart. They monitored it, cos usually they close over, but it kept growing. When I was about 2 I had open-heart surgery to fix the hole. And about 6 months later, I was diagnosed with juvenile rheumatoid arthritis, I remember being able to climb the back fence to my friend over the back and then one day I just couldn’t do it.  I affectionately refer to it as Arthur-right-arse now.

So after that we moved to a smaller town but closer to Brisbane to have more access to therapies and specialists. I started my education journey in the early 80’s at Helidon State Pre-school. The best memory I have of pre-school was attempting to ride my bike to school but falling off the second day, it took me ages to get back on that bike, but I did, eventually.

When I was due to start primary school, it was decided that I needed a wheelchair to conserve energy in the playground. I wonder if any 5 year old really needs to conserve energy, but hey they were the experts; who were we to argue. And as long as I could go to the regular school with my brother and sisters, mum and dad were happy to accept a piece of equipment as a condition.

I had a pretty average childhood, I did – or at least attempted to do – little athletics with my siblings.  And I was excited about going to school.  I thought I would learn how to read and write all on my first day. Much to my disappointment, this was not the case.

After that; we moved around from Helidon to Toowoomba; then mum and dad divorced; and mum, one of my sisters and I moved to Dalby.

I completed primary school and was orientated into high school with the rest of my grade. My first day of high school was such a blast, scooting around on my manual chair from one subject to another I felt so grown up, so responsible and so ready to take over a bigger school again. I did English, math, home economics, Art, Geography, history, music and in those days – I feel old now – never thought I would refer to anything in my life, as in those days, but in those days everyone had to do phys Ed.  I remember doing square dance - or trying to it was a bit hard with a chair attached to my butt. But I still do a pretty good modified chicken dance.

I was in the middle of my first year of high school; when I came out of remission; and was in the midst of the worst flare up I ever had. “Arthur right arse” was really kicking my ass this time.

I often describe my life as teetering on the edge of both worlds. By both worlds, I mean the mainstream community and the disability centric world. We ventured into the disability world when we needed to, For instance, I always attended mainstream school at mum’s persistence, and we worked out that my life could be made a little easier with equipment like a typewriter for class work, and walking sticks instead of a wheelchair.  We accessed these things in the disability world. But quickly retreated to the real world of our community when we got the assistance we needed from the disability world.

It was during this relapse or ‘flare up’ that my life, and that of my family’s worlds changed forever. I wasn’t able to get out of bed most days, and when I could I wasn’t up to going to school. Mum was working full time; and I needed more assistance everyday as my pain increased, and my mobility decreased.

So mum sought assistance for additional therapy and support at home. We should have heard the warning bells in the words: “Oh you need respite”. No one should presume to know what is best for an individual or family, rather offer options available.

But it was the early 90’s and this was the language of the era. And we were sold on the way they talked up this wonderful camp. We accepted in good faith what they were selling to us was what we were getting. But when we made the journey from the country to the city and as we approached the big old gates I noticed the sign.

Moldy Rose – home for crippled children.  – For personal and legal reasons I call it Moldy Rose. This did not look like, or smell like any of my school camps – As had been promoted to us.  – KIDS ACTUALLY LIVED HERE, AND CALLED THIS PLACE THEIR HOME!!

Home did not look like a hospital; and no camp I had ever been on, looked like this scary old haunted place. We were told this place was a Camp for children like me; who needed extra care.   It was not meant to look like a hospital. What we got was actually institutionalized respite care.

       

I was there 4 days out of a 2-week stay and because they didn’t know me, they assumed it was normal; that I was suddenly slurring my words and having difficulty swallowing. It wasn’t until I became incoherent and unconscious; staff thought I might need medical attention.

Prior to this I was verbal, and pretty much never shut up – so my mum says.

I now refer to my life in two parts.

A S.

And

B. S.

B S – Before the stroke.   I had aspirations of becoming an actress. I was a full spirited average teenage girl, with two things on my mind – boys, and big dreams. I was outspoken, outgoing, and outspoken again.

Although I have been non-verbal for more almost two thirds of my life, childhood is such a huge part of ones life, losing my speech was as you can maybe imagine pretty devastating.

A S. – after the stroke, my body frustrated me; I still felt and thought the same but could no longer express it physically or verbally. So emotionally I let it all out, and mourned the loss of my speech for awhile. But then life was still going to keep going, and slowly I began living it again.

When I was to return to school I was seen as even more different in a less cool way. No longer able to communicate verbally I was disregarded as a viable student and placed into the special Ed unit of the school; with no lesson planning, suited to my level of education.   No plan for me at all other than to vegetate. Of course my mum and I fought this decision. But I was no longer seen as the same intelligent young girl I still was inside. In the end we moved towns, from country Queensland to the urbanized sunshine coast. So I could go to mainstream school and be challenged intellectually, as I had always been. I finished high school in year 10 and did 2 years study at TAFE and obtained an associate diploma of fashion studies.

After TAFE I dropped out on life for a while and got into a bad relationship. But I still maintained some community credibility in my roles on various boards and committees for local advocacy organizations, and an assisted employment agency. This helped when I was ready to grow up and get a real job, and woke up to myself so to speak.

I need to say I am not a very strategic person, in that my life hasn’t been planned or formulated. It’s just happened. I have made bad choices and done stupid things.  When I was at TAFE I had big plans of moving to Sydney to pursue my fashion career. But that just never happened, I made decisions that took my life on a different path. I stayed on the coast, and my life just progressed. I gained employment, and worked at housing Queensland for 7 years and did some study in different industries, predominantly Business studies. I fell pregnant in 2006 – no that wasn’t planned either, and I am now a single mum to a gorgeous 4 year old boy, I am currently am just about to complete my first year at university, and life keeps flowing, although I now do have life and career goals I want to achieve, I will always be a dreamer, but I have become a realist too with age. As John Lennon once said – life is what happens, while your busy making plans.

So now on to communication, and being heard, being taken seriously, and being valued, when societal perceptions are still very closed when it comes to communication.

In all aspects of our work, and personal life we all seem to have one problem or another to solve at any given time. In looking for solutions, we seem to apply the same Band-Aid and wonder why it loses its stickiness – or effectiveness – even when we get a fresh new packet of Band-Aids – we like the packs with all the different shape band aids in our house – but which ones run out first? The standard size shape ones, not because our cuts and scrapes are always the same standard size, but because its what we know.

So why am I talking about Band-Aids in a communication stream? Because like cuts, and bumps we all want an easy solution to what’s seen as a very complex and time intensive issue for the human services right across the board.

But with anything in life we all grow, things change, fads come and go, and some go down in history as changing lives, changing the world as we know it, or knew it. Like life, our needs, wants and desires can change at anytime. I am lucky in that I can be quite adaptable in my communication – from writing messy scribbled notes, to my own developed signs that only my nearest and dearest get and understand, and to my now main and preferred method of communication – my I pad. I pay tribute today to the late great Steve jobs in being able to communicate with you all today so efficiently, his vision has certainly changed my world and that of my son, I have only had the I pad for since Christmas eve last year, but prior to that I was using an I pod touch with this application, and whilst that was still effective, the I pad has really made communication much more efficient, because of the more accessible size and still being a portable manageable size.

When I first lost my speech I used a device called a canon communicator, which really was just a glorified label maker, only because it was considered an aid they were very expensive, and broke down often. When it became so unreliable I gave up on technology for a few years and resorted to messy hand written notes and I still have a few crate fulls of filled notepads, which might make memorable reading one day. Then one day I was given then electronic diary, and I began using that as my main form of communication – it was cheap, concealable, and reliable, and cheap enough to replace if after too many drinks were spilt it died.

After 6 or 7 years of using this little keypad I was finding people were having trouble reading the screen, so I moved onto a mini netbook, and I experimented with freeware screen readers, but I had always had an issue with the robotic sounding voices, having had my own voice and lost it, I knew I wouldn’t settle with a computerized sounding voice.

I had learnt to use an Australian accent acapella voice and a freeware program that reads power points so I began using that for these kinds of presentations, but it was not efficient enough to use in everyday communication situations. And then I found out about this amazing revolution we now know as applications – where would we be with out the wonderful world of applications?

I know I would still be converting this text to power point slides and running two laptops to present and probably silent word processing in everyday situations.

The technological advances in the last 2 decades have changed the lives of many, mostly for the better. Yet I still meet people who have no means of communication, can you imagine your world if you had no means at all?

This is where the importance of low tech and no tech communication has a role to play. As I mentioned when I was at moldy rose, they didn’t know me to know my needs, or assume to understand my level of comprehension. When someone with little to no communication is truly known by people, and has roots in a community it can mean the difference between merely existing, or being truly valued, being understood, and looked out for.

As technology is evolving so rapidly the human services sector in Australia is beginning to catch up to this I T age, and as result end users are changing in relation to requests for funding for assisted communications and Speech Generated Devices. Slowly the funding providers are seeing the value in the mainstream devices over the specialist communication devices, yet still many people do not have someone in their lives to e able to read simple human needs signs.

As I mentioned before I have a son, we live on our own, and have a maximum of 6 hours support a day to assist me with daily, weekly, monthly and yearly tasks. My sons name is Hunter and he is totally accepting of me. To Hunter I am just mum, his mum, his constant person, and he are very secure in that. Hunter has begun educating by example without even being aware of his impact in the world, he even educates me, I can still verbalize a little bit, but mostly its not comprehensible, Hunter understands mums happy noises and mad noises. He understands about 60 percent of my verbal and self made signs, but when he doesn’t get what mum is saying, he tells me ‘tell me it on the I pad mum’, and if its on the I pad then it’s the whole truth, and nothing but the truth. The I pad is his oracle.

I recently made the mistake of introducing Hunter to you tube, we use the I pad for bedtime stories, and I have downloaded a number of new and old stories. But one evening he was really interested in rescue helicopters – he’s such a boys boy – so I searched rescues on you tube and for a week he watched chopper rescues, and was in awe of these amazing clips. But he now navigates his way around the I pad from stories to you tube and other educational applications, it’s a little scary that he almost knows his way around the I pad better than I do.

Because the specialist communication devices are now running mostly Main-stream tech market operating systems, doors are opening to people who use specialized equipment especially communication aids to talk. I know of a young person who uses a dynavox maestro which is the Ferrari of specialist speech generating communication devices, and they had a technical problem which would usually mean they would have to send to device away to be repaired and have no means of in depth communication, and the eternal game of charades goes on. But they were given a tip off to try ‘gizmo’ guy – which is like a computers are us, mobile repair service. Gizmo guy was able to fix the glitch on the spot and had the young person communicating again in the comfort of her own home.

Social media has given so many more people a voice, and I would challenge the audience to engage more with people through all of the social networking sites in cyberspace. It would also be good to see this medium used to engage with what people really want from government and NGO services.

Given the very nature of disability sees many people almost trapped in their homes, and most people are now on the internet wouldn’t it make more sense to communicate and engage more efficiently with people through social and professional networking sites? From consulting, to promoting, to linking people with broader networks, the possibilities are endless. With more and more people turning to mainstream devices too like the I pad, I know that funding providers are concerned that it can open individuals up to exploitation, and inappropriate use of the device; and whilst this is true, it also opens their immediate world up to connecting to far more networks than just those they physically encounter.

I admit I am a geek, and I am a huge fan of big bang theory, I just want to share a snippet of a clip from the show – just one line really, but I will set the scene, Raj can not speak to women unless he’s very drunk, and then he becomes obnoxious, Penny the female neighbour who has befriended the geek guys over the life of the show, sets Raj up with a girl who’s deaf – he can’t speak to girls, and she can’t hear boys – so a match is made, or is it.

I love that scene, but the sad thing is that its so very true of how society in general tends to stereotype people, I know I sometimes stereotype people, its human nature, but being aware of how we view others helps lessen the impact of our own perceptions of first impressions.

I currently use Facebook, twitter, and linked in, to network, but I’ve just discovered through a recent entrepreneur lecture at university these 3 make up a small population in the scale of global networking media. Guess what I will be doing over the summer break – yes – exploring other social media to build on and grow my global network.

So that's me, I have lived, and learnt, I have enjoyed the ups, and endured the downs, and gone with the ins and outs. I still continue to learn, grow and evolve as we all do, and no doubt my communication methods will also change as I do. I would like to leave you with a few of the big lessons I have learned through my life's journey, not necessarily linked to communication, but that affect every aspect of life in some way or another.

It starts with family love, and acceptance. But also and more importantly, expectation. I think the fact my parents expected the same amount of responsibility and understanding from me as they did my siblings, gave me a strong sense of self worth, I was always just expected to give it a go. Yeah sure they made consideration and decisions based on my medical condition. But on the whole my sense of self-uniqueness has come from my family challenging, encouraging and promoting my strengths.

I believe we need to educate all kids together, and individually meet their learning needs. In primary school I was just one of the crowd; and tasks were modified for my participation. But the outcome was the same; I still had to show competence. No child, youth, or adult needs or deserves a special education. Rather an education that fits them; is more appropriate. Special is made to sound attractive  – but it sucks you into buying and accepting a dud. When we segregate children we are teaching them prejudices. Children who have a diverse class of peers grow up to be more accepting and open to diversity in adulthood. Isn’t that just common sense?

Language is so important, and we need to use it correctly in order to educate, or perhaps re-condition the community in the language used and in turn people may see some ones value more clearly.

 So I hope I have left you with something interesting to think about today; and when you meet someone different to you, think about the very humanness that makes them who they are. Go against the current if that’s what your gut tells you. Life is a journey. Start dreaming; add to the value. Don’t let labels be the value of you or anyone.

I was inspired a number of years ago to write my own personal manifesto, although it changes a little each time I share it in a presentation, the messages remain the same. They say everyone has at least one book in them, everyone has a story to share, and it’s just a matter of finding the means to tell it for some. Before I finish this speaking bit I want to end with something I read once.

Courage is what it takes to stand up and speak; courage is also what it takes to sit down and listen. So thanks for being courageous enough to listen and for being the unique person you are.

So thats my first blog, till next time ...

Love, laugh, live, enjoy ... Xxxx