Tuesday, 30 December 2014

Healing, and triggers that make us realise old wounds never really heal...

If you're dedicated to reading this settle in with a drink, this has taken 2 weeks to write; its not been edited as I wanted to publish it online before the end of 2014! 

Its time to heal again, and 2015 has to be better!

Ok so in my first blog, I shared a transcript from one of my presentations, I spoke about losing my speech, and the process of mourning, and moving on, and getting on with life. I generally try n look on the bright side of life, and look at the positives rather than give any energy to negativity. This time though I need to speak about the raw emotion from one small trigger that has ripped a deep emotional scar open and so I can begin the healing again, not just for me, but for and with my family, particularly my mum and my siblings.

The trigger was a message from a colleague and friend, who knew a little of my experience in that place I used to refer to as ‘moldy rose’, asking if I had heard they were demolishing the site at Corinda? Of course I hadn’t heard this news, at first the emotion was of slight relief, and my first response was to find out when, so I could dance on the dust and ashes of the site where my life, and that of my family’s were irrevocably changed forever, but that slowly grew over the week to anger.

Anger because by demolishing the physical site effectively the powerful corporate cunts hiding behind a charity/medical model of servicing the ‘poor’ cripple children, and taking the ‘burden’ off families were again invalidating the abuse that has occurred over decades. Where part of my spirit had been broken, where I was robbed of my speech, and so much more. A flurry of emotions began to stir in me, more and more as I processed this news, and I began to write vehement reviews all over the rebranded Montrose Access Facebook page, and started to see more and more negative reviews in the form of one star ratings. I personally would have given a minus 1 rating if that were even possible! My review at first was removed, so I re-posted and re-posted and received some politically correct statement of how to go about making a formal complaint. My response was, that we had tried to do that over 2 decades to no avail, and I will continue to share my experience publically.

So here I am writing it all out, after a Christmas party with friends on Friday night, one of my sisters came back to my place, and I suddenly blurted out ‘I got news this week that Montrose is being demolished’ (well I can hardly just blurt, but as I typed I started crying uncontrollably). Having been processing it all week, the flood gates opened– I really don’t know why I am crying over this – but having flicked through their Facebook page a few times during the week, I saw photos of rooms and things that hadn’t changed in 24 years. I guess also not knowing the corporate logic of demolishing the property, whether it be for financial gain, to build a new ‘home for cripple children’ or rid them of the bad press that place attracted over many decades. And whilst the advocate in me would love to see every bloody institute covering as a ‘home’ a place of pretend refuge for the ‘poor’ crippled blown up, demolished and dismantled from the upper echelons of management down to the scummy abusive so called care workers, something in me was screaming, they cannot simply knock this place down and wipe out the pain of the survivors with a wrecking ball and bulldozers.   

I am going to share some of the fragmented memories, that have started to flood back, that I thought I’d buried deep enough to forget, some maybe repetitious of the first blog, but these are raw once again, and I will not be sugar coating anything with a positive spin, haters will be haters and I expect to get the ‘how could you tell such stories…’ This is my reality, my memories and this is the truth of what I saw and experienced in Montrose – the home for cripple children.

Mum and I had driven to my grandmas the day before, and mum and I stopped in Toowoomba and did some shopping – I was excited because mum had bought me some new clothes for what was to be a 2 week stay, the next day we set off from grandmas house, I remember it being a bit emotional in the car, but we chatted and made light hearted jokes about boys and what I might get up to.

It was a Sunny Spring Thursday in October, that my mum and grandma drove in through those big old rusty gates, When we arrive mum was ushered into an office to fill out forms and grandma n I were escorted to a dormitory type room. Grandma helped me unpack my things, and then we went back up the sterile 3metre wide ramp corridor to meet mum. On our way back up I noticed a side ramp to a different wing or quarters, and asked what was down that ramp, they told me that’s where the people who didn’t go home on weekends stayed; I didn’t realize that would be where I would be moved to on Saturday morning.

When we met up with mum, I could tell she was upset at leaving me there, the matron or who ever she was that mum had just been with tried to make the good-byes quick, but mum and grandma lingered a little bit longer, took me for a walk through the grounds and gardens accessible to the public from the car park area. Staff remarked ‘parents usually don’t stay this long, and its usually best if they don’t …. The children need to get used to it, and fast’. My grandma, who could be quite abrupt when needed, replied ‘well this isn’t your usual parent’ in her cutting tone, she was a feisty one when she needed to be.

I reassured mum that I’d be fine, and I will see the city specialist, and when she come back, we might have a better treatment plan for my arthritis. We had been assured when the booking was made through the local community social worker back home, that I would see some specialists, but most of all I’d have fun to take my mind off the pain caused by this flare up.

It was getting late into the afternoon, and eventually mum and grandma left, but I felt all our hearts tearing as we said goodbye.  I was escorted back to my bedroom to ‘do my own thing’ before dinner; I was having to use my push chair which I propelled with my feet due to the flare up, and I was having trouble mobilizing independently even in the chair. My elbows had seized, so I could only use my forearms a little to help propel my chair. I managed to maneuver myself around my ‘room’ a little and retrieved my Walkman and settled in to play some music. It must have been around the time shift change occurred as I had a new face poke their head in and introduced themself. We struck up a conversation around religion, having been raised loosely in a catholic family, I do use the term loosely, because we were not regular churchgoers, nor did we pray, but we cursed and swore when appropriate to express passion or anger. We were just an ordinary working class middle income earning family; mum was a nurse, and although my parents had divorces several years earlier; dad was a hard working ganger on the railway.

At this stage in my life I was struggling with my belief in A god, and all religions. This worker explained he had recently, or was at the time converting to being a born again Christian, I cannot exactly recall the status; but we had an intellectual and quite mature conversation debating Christianity and religion and the difference. It was during this that I witnessed what I now recognize as the shower procession; which was more like herding the cattle in for milking.

Young girls and boys were stripped naked, lined up the hallway on shower chairs with a towel thrown over them, that most were unable to hold them up so everything from butt cracks to vaginas and penises were able to be seen by all. It was like I had entered the dark ages I had only ever read about in books, these young prepubescent children and teens denied any dignity, or not even aware that this was not appropriate. Well it wasn’t appropriate for me as a stranger to see 3 in at a time, three out, and the process repeated while they sat there totally naked1 The staff I was talking to must have interacted for longer than was deemed appropriate, as another staff member chased him up to do his jobs.

Dinner was called not long after that, at this point I couldn’t feed myself because of the swelling in my elbows; the pain was unbearable to move them. This annoyed the staff because I was yet another mouth to stuff, then the medication trolley was wheeled around the table, I was on a high level prescription aspirin/panadol called eccatrin, they were large orange tablets. Mine were dispensed and I downed them with no trouble – my pain started to ease for the night, and some ‘residents’ for want of a better word had TV privileges. Because I was there on a temporary stay I was allowed stay up till 8pm at home my bedtime was 8.30 or 10.30 on holidays.

I watched some city TV, which for a country kid only used to 2 channels at that time was a bit of a treat, but after a big day of traveling and some shopping on our way with mum and grandma I went to bed when I was told to at 8pm. Later that night I was woken to take my medication, at home if I was sleeping soundly and didn’t appear to be in pain, mum wouldn’t wake me; but because they didn’t know me, or my needs, I was just another ‘poor’ unfortunate cripple they had to ‘look after’. I refused that night, and the staff on duty let me be, I went back to sleep quite easily.

The next morning, breakfast similar to dinner but more hectic, as a few ‘deemed suitable’ attended a main steam local school, they were priority to get fed, and cleaned up to make the bus transport. The others (myself included) were processed in a similar way, breakfast, cleaned up, and dressed for the days ‘activities’. Activities included either attending the ‘school’ onsite, or playing games, or whatever the staff had planned.

As I said earlier my memories are fragmented, both from repressing them, but also due to the overdose I received over a period of a few days. But I recall seeing this huge therapy pool, I asked if I could go in the pool, but I was told there were no staff to supervise me, and a physio hadn’t assessed me, and the pool rarely gets used anyway for therapy. So what was it used for, and why have this huge resource if it rarely gets used? But these and many other questions didn’t start to surface until after… And still haunt my mind, with no answers. I know too well many things we will never have answers for, like the loss of a loved one, missing children, and even on a political level – why our ‘leaders’ make dumb statements, don’t follow through, or even recognize global warming in the case of our current prime minister. But I do feel the questions I have had since the medical disaster that occurred at the hands of virtual strangers, and the wastage of lives when clearly the resources were available could be, and should be answered. But I digress; I need to purge all these memories, and questions into words for everyone to know.

Because I refused my medication the first night, (but slept fine) it was decided I needed to see the local GP, I recall being taken to his clinic, and he seemed like a decent enough fellow, he reviewed my medication, and added an anti-inflammatory, stating the prescribed ecatrin was a little high, but given I had been taking it on and off for a number of years then, if I didn’t want it, and could sleep through the night, then I wouldn’t need to be woken. It was a quick non eventful GP trip, though at the appointment he contacted Dr Tiernan – a pediatric rheumatologist and made an urgent appointment with him at his private clinic at the Wesley hospital – I was happy about this, as getting an appointment with specialists had always been a long wait period.

We returned to Montrose, and it was lunchtime, again another experience that was akin to feeding time at the zoo; not the orderly usual school yard lunch break I was used to.  After lunch I was advised I should go to the school room to try and keep up with my school work, as I had missed a few weeks prior, having always had a thirst for knowledge and desire to be educated I obliged. Again another culture shock for want of a better word, I had been main stream schooled all my life, and to walk into a large hall shaped building that I can only liken to that of day care, with books, toys and puzzles suited to a kindergarten level. How or what was I going to gain from spending an afternoon in this space?

By this stage the reality was hitting, this was no ‘school camp’ it wasn’t even a hospital, it was a waste land surrounded by beautiful gardens to give the illusion of a ‘home’ or ‘boarding school’ for those poor cripple children whose families simply couldn’t cope… And why couldn’t they cope? They couldn’t cope with being told to give up on their child any longer, so many did, and as a result this hell hole scored charitable grants, government funding and the rest; when if only half this money was channeled into providing more support to families in their own homes, we now wouldn’t have a generation of parents ridden with guilt, and we wouldn’t have survivors like myself, speaking out about the atrocities that occurred.

Again I digress, there is still so much to be told, and this is only my story, my family’s story, I do wonder how many more out there with scars in their hearts, and nightmares in their sleep still, because of this institute??

After an hour or two in the ‘school’ room I requested to go back to my room to read my books and have a rest. I was informed we were going on an outing to the movies in the city that evening, and to gather my clothes and toiletries I would need for the weekend – this puzzled me, but I didn’t question, I was still reeling from all that I had seen and witnessed in just 24 hours, I remained hopeful that I’d get used to it, and settle in within a few days. Where there is life, there is hope, right?

The shower herding started earlier that evening, some children were picked up for the weekend, many others stayed. I chose to wear one of my new dresses, as going out in the city for an evening was a big thing for a country girl like me. It wasn’t until they started loading us into a big white van, and not your ordinary people mover, this looked like a prison van on the outside, and inside was a cold steel box with ropes and straps to tie the chairs down. Because my chair was a basic stock standard for short-term use when I needed it, it didn’t have to tie down points as most chairs do nowadays. They stabilized it to one of the side bars and jammed me in between two solid chairs; I’ve since been on many hairy a rides, but I still flash back to that ride as my chair tilted and slid all over.

Upon arrival, the cattle were unloaded one by one, with staff pushing some of us; we were offered McDonalds as a ‘special treat, for us special boys and girls’. I requested just a thick shake, as I knew I could hold that and drink it independently, I hated having to be fed, and being fed in public was not going to happen!!

We were then herded into the cinema with no choice of what WE wanted to see; it had been decided for us. I can’t even remember what the movie was; I was just watching this freak show (not my idea of a cool freak show either) I was in with disbelief and horror.

When it was time to leave, I asked if I could get lemonade; the staff ignored me – I was one of about 15 they had to round up – with only a few staff plus the impatient driver. As they were strapping my chair in I asked again; it was the nice staff member who I had spoken to on my first afternoon, he said he really shouldn’t as no food or drink was allowed in the bus, but he ran and got me a small one anyway.

Upon arriving back through those haunted gates, we were unloaded and herded into the ‘weekend quarters’ where I found a few of my belongings on an antique hospital frame bed in a double cubicle style room. We were changed, given a wash over with a flannel, medicated and put to bed. Again that night I was woken to take more meds, I tried to refuse again, but this time my refusal was met with verbal abuse of how I was wasting their time, and I wasn’t the only one in here they had to take care of.  I gave in, and took the pills, and went back to sleep.

The next morning I woke up so sluggish and very emotional, I tried to lay in as long as I possibly could to avoid seeing the quarters in the light of day, from what I had seen in the dark of the night after our ‘lovely’ outing, I knew this was going to be a very long weekend.

I don’t remember doing much that day, I know I slept a bit, and was hanging out for 6pm to be able to ring home.  But 6pm was dinner time so I had to wait till 7pm, by the time I got to speak to mum I couldn’t stop crying, not from pain as I usually only cried because of stupid physical pain, or over silly teenage girl stuff. This was different, it wasn’t homesickness either, as I had been on school camps and barely thought of family, or missed home – I was too busy having fun with my friends… I felt like I had no control over my emotions, and again because they didn’t know me, they didn’t see the deterioration. The staff member in charge of monitoring phone calls threatened to hang up if I ‘didn’t cut out my nonsense’. I could hear mum getting distressed so I tried to pull it together, and attempted to make small talk about what my sisters were doing, and how my little nephew was. Mum was concerned that I was so upset, and in the end the staff took the phone off me, but mum had told her she was sending a friend to visit the next day, and gave permission for this friend to take me out. Marie was one of mums’ friends from work, but her and I had become close over the years, and she even took me on little holidays, I loved and respected her very much. She was like a big sister, but without the bickering I had with my actual big sisters, she enjoyed quirky movies with me, and we always just had this indescribable bond.

After the phone call ended, I became a bit hysterical, I just couldn’t control my emotions at all. They decided a bath might help calm me down, so they ran a bath and took me in, I freaked out again – this wasn’t a bath tub – not in my world at least. It was a huge surgical steel trough. But the water was warm, and it did help me calm down a little bit, until the three nurses standing round me started talking about me, and how my mother should have bought me here when I was younger, so it wasn’t such a shock to me. I tried to explain, this wasn’t my reality; I had grown up in a family home, and this was all that was offered when we asked for some in home support. But because I became emotional again, all they saw was a hysterical spoilt little cripple.

After the bath and such an emotional day, I quickly went to bed, but was woken again in the night to medicate, again I tried to refuse, and again I was abused, only worse, being called spoiled and to just accept it, that mum couldn’t handle me anymore.

The next day I woke up even more sluggish, but not as emotional, just vague. Marie came and saw me before lunch, and I begged her to take me out for a drive – I used to love to go cruising with her. Of course she didn’t hesitate, we went out, I think she took me to bingo, but this is where things began to get really fuzzy. I recall feeling like I was drifting in and out of sleep; I recall trying to have a conversation but not being able to say some words. We had lunch, and drove around as long as we could, and I knew she had to take me back, but I could feel she didn’t want to.

I started to feel sick, and as we parked I began vomiting, Marie rushed round to the passenger door and tried to turn me around out of the car so I wasn’t sick on myself but could vomit on the ground; she was shouting for a bucket and towel. Eventually staff came out, they got me into my chair and told Marie they’d take over from here. They whisked me away before we could say good-bye, and that was all I can remember of that day. Mum said she had spoken to Marie that night (I wasn’t allowed any calls that night, because I was sick, and they didn’t want to have to deal my hysterics again) Marie had expressed her concerns that I wasn’t very coherent or my usual bubbly self.

I recall being moved back to the main ‘house’ or dormitory sometime that night (Sunday), or early the next morning – Monday. I recall being taken to see the specialist that Monday afternoon, trying to explain symptoms of this latest flare up, but repeatedly apologizing because I was having trouble forming my words; I recall telling him my right side felt heavier, and I hadn’t experienced that before. He had a lovely manner, and noticed I was drooling a little, he asked if that was normal, and I recall crying again saying no, I was usually so independent, and I was losing what little control I did have. I just recall apologizing constantly through that consultation because I couldn’t talk clearly, and I was always such an articulate and chatty young woman.

I don’t recall the dinner routine or the shower procession that night, but I remember waking up half falling out of bed, and calling for help. The staff came in threw me back into the bed, and told me to stop calling out as I was waking up the others, and if she had to come back in and deal with me again, she would move me. Move me where? I didn’t remember having called for help before that?

After that I started vomiting, but I was too scared to call for help, she must have heard me retching, and burst into the room abusing me in her heavy accent. I have weird memories of being taken to this little hut thing out in the gardens, but the next thing I recall was being stripped off and taken to the showers. I had vomit in my hair, and was again so emotional, apologizing and asking for help; she turned the shower on cold and pushed me under it, leaving the water to wash away most of the chunks before coming back to wash me properly. All the time telling me to shut up, and I was carrying on for no reason; I was a 13-year-old girl in a strange place, barely able to stay coherent, and constantly being verbally abused.

Before she could come back I began cramping again, not wanting to be sick again I tried my hardest not to vomit, but then my bowels let go, and I couldn’t stop anything. I cried out for help, and she came in swearing at me – I assume she was swearing – though I couldn’t understand much of her thick accent and my state of delirium. But I recall her grabbing me by the hair, rubbing a flannel over my face, which had been used to wipe my soiled butt. All the while telling me how disgusting I was, I mumbled that I was going to tell someone, it must have been clear enough to be understood as I just recall her pulling my head back by my hair telling me to go ahead, because no one would ever believe me, taunting me, in my face who’s going to believe you, after all the tantrums you’ve thrown… I don’t remember much of the morning after she slapped my face and hosed me off.

The next thing I do remember was being put into an old car or truck, and then I remember being in the emergency at the royal children’s hospital; I was trying to give them my name and details, and asking them not to call my mum because I knew she was on night duty and would be sleeping, but no one could understand what I was saying, not even I recognized the noises that were coming out.

I recall a gentle nurse come to escort me to have tests, he tried talking to me, but when I got upset that I could not reply back in a coherent state, he just started asking me questions I could answer with a nod, a blink or a gesture. After I had a blood test I don’t remember anything.

I woke up about a week later, my family was there all crying, what had happened who had died, why was I in hospital – all these questions spun around, but no words could come out. I grabbed someone’s arm and began spelling letters onto their arm. Each wrong guess frustrated me, each correct elated me – I am still in here, I can hear you, I can understand you, but no one could understand me. They told me not to talk, just rest. Slowly I began remembering flashes of wakefulness from the week that had been lost in hospital. My Dad had been to see me, he never liked hospitals and very rarely came to medical appointments, so for him to have come, I knew something major had gone down … But what, and why couldn’t I remember, why couldn’t I chew, or swallow or even drink without help, and without dribbling like a teething baby?

The days and weeks after, as I slowly became more coherent I was told I had had a stroke due to being over medicated; the strong aspirin had thinned my blood so much I had been having mini strokes for days, before a major one had occurred sometime between Monday afternoon and Tuesday morning. I was also told I had finally ‘become a woman’, although I had had my period sporadically for about a year, it wasn’t regular. In that week in hospital I finally started menstruating; to many women that is still seen as a curse; but to me it was just another thing that had been stolen from me.

My city cousins and aunt had come to visit me after a few weeks, I remember just sitting quietly with my Aunty and not wanting anyone to see me like that, she wept for the niece she had once described as having spunk-itude; I wept because I felt like more of a burden than ever before. Plus I didn’t want anyone to see me like that; I was trapped in this even more twisted, broken, bent body and I could no longer ‘tell it like it was’. My cousins didn’t come back again, I think all the drool, and snot, and tears scared them off – who could blame them though – they were boys and they had seen me give cheek as good as I got all my life, suddenly I was an expressionless, motionless figure in a chair with tubes and braces keeping me still.

It took many months of rehabilitation and many years of dealing and accepting this as my fate; I had never thought of myself as a cripple, or disabled, I merely had a medical condition that affected my joints. I have accepted and embraced my place in the world of disability; I am a woman with a disability, and proud of who I am, and what I’ve made of my life.

I am not ‘inspirational’, I merely want create a decent life for my son and myself. I am not a victim, I am a survivor – and I am not going down without a fight, I am not an object of pity, don’t treat me with pity unless you want your own pity party.

So I’ve been writing this out for almost two weeks, I’ve cried, I’ve laughed at snot pour out, I’ve healed a little again, but the hardest part was talking to my Mum about opening these wounds up again. When I told her how the news of Montrose Corinda ‘home for cripple children’ was being demolished had triggered all these feelings, and that I was intending on writing the whole story out – her words made me realize I had to tell this story, our story.

My mum said:  I will never ever forgive myself for you being there I think every time we are together how it is my fault If I could change it I would in a heart beat I would never change you as you are but that time in there I would change very quickly I will regret my weakness until the day I die as I believe your life would have been so different and I always wanted the best for all of you but feel you were dealt a triple whammy, I would never change the person you have become or the mother or daughter you are but that Montrose time I would.

No matter how much I tell my mum it was my choice too, and we made the decision together, as a parent myself I understand more now that we take ultimate responsibility for the choices we make which affect our children. To know my mother still feels such guilt just seeing me; in the years immediately after the stroke, I recognize now I became too dependent on her, and she accepted that, but I didn’t realize how deep her own scars went from that one fateful choice to accept help, she sees as a weakness. My mother is anything but weak; she’s raised four headstrong individual wonderful children, and has just adopted a foster child who has been in mums care for almost 10 years.

My father passed away the year my son was born, and I have regrets that my last phone call to him before I lost my speech was one of teen angst and full of nastiness; I don’t believe in a god, or the ever after, but if I did, I think he would be saying ‘come on girl, get going, you can do this’. And I hope he’d be proud of me too.

So why have I written all this out, these stories, the horror stories that we have lived need to be told, and like fables they need to be cautionary tales, even lessons for future kids born with disabilities, parents, and siblings. Like I said don’t pity me, but get angry with me, take action with me, share your stories on social media – the platform that’s given us all an equal playing field – use it to play hard!!

To all the ‘anonymous’ benefactors, members, and any other fool who is donating to this ‘service’ in disguise, please reconsider where your money is going – my mum paid a few hundred dollars (in the early 90’s that was a lot of money, incidentally she wanted me to let you the reader know, she never did get any reimbursement back of the remaining 10 days I was in hospital) for me to stay there 2 weeks, the damage done in just a few days, not only to my physical state, but emotionally to my whole family is beyond any ‘good’ they pretend to do with your hard earned money. 

Give your money to a family doing it tough, or invest it directly with people who have viable business plans, and hopes and dreams for the future – I know plenty who are labeled as disabled, but who have the drive to make this world a better place. Stop pouring good money after bad into an already fully funded corporate run organization. Perhaps if the upper echelons of management took a pay cut – the figure they state on their website of being underfunded a few thousand every year for every client; they wouldn’t need to use the ‘poor’ cripple children in tragic marketing campaigns.  I try not to think about ‘what if’s’ but in this case I do often wonder how differently my life, and my family would be now had we not all had to deal with such adversity. I have said in the past, that although the medical disaster had turned everything upside down, and I had encountered, and met some truly remarkable humans, some who have become dear friends; I have to question also what bigger dreams would I have made come true, like being on the stage, on film, but it was my fate obviously – I just hope the corporate faceless cunts don’t ruin anymore family’s, and steal other young girls dreams as they did mine, and turn them into years of nightmares!!

It is human nature to fight for survival, and as one of my heroes says, where there is life, there is hope. I have hope, that we are on the edge of a revolution; where all people labeled as disabled, mistreated, abused, underrepresented raise up, and don’t give up. My theme song for 2015 is edge of a revolution – write your own headline, be your own headline – but be a positive Crip – don’t lay down and accept shit. 

Oh and by the way, you can rebrand, rename, Montrose to ‘Montrose Access’ even restructure the company, but one thing I’ve learned from my marketing studies is that it's pretty hard to rebrand shit and make it smell nice!!! 

This may seem a negative blog to end the year on, but its been cathartic to write it all out, and tell the now fragmented memories of what really did happen - for many years I never spoke of these events, because it upset my mother so much, and because I really didn't think anyone would believe me. I now know there are other survivors out there, and the more we tell our stories, the less they can deny, the more people will see the truth for themselves. 

Until 2015, live, love and laugh, or cry when you need to, but always remain true to you! 

Lisa XxX

Thursday, 3 July 2014

Travel Tales ... No cyclists have been hurt .... Yet!

This is my first blog of my travels... Well my trusty travel companion and I made it to Amsterdam later afternoon on the Tuesday the 1st of July with many adventures along the way. From check in I was not impressed with emirates service or pretense of care. I usually book through QANTAS, being a frequent flyer member, my chair details are all on file, and I do not have to repeat the same questions every time I fly, ,how heavy is it' when I reply with 135kgs depending on what scales (it has weighed from 128 - 145kgs at various domestic airports within Australia. 'Is it wet or dry cell?' I say 'dry'. At Emirates check in I got the 'you're-to-hard' basket exhalation.

In the end I had to Trwnsfer at check-in to one of their manual aisle chairs; when I had rung qantas to ensure I would get to keep my power chair till the gate. Not only is it more efficient for me to stay independently mobile (in any situation) but it also means one two less hours of sitting in discomfort. I think only people who are in a chair themselves, or know someone close in a chair would get that. Despite the hiccups, I medicated and managed to get some sleep on the longest flight (Brisbane to Dubai) and the transfer at Dubai wasn't too painful; oddly enough they have a divine 'special assistance' lounge, but with no facilities there to stay and drink. Was a strange but no unpleasant experience.

When we arrived at schipol airport in Amsterdam, I had just assumed we would get my chair back, which was like sliding back into my second skin, it was heavenly comfort and freedom, after 23 or so hours apart; being reunited with my ride was beyond description in words. Let's just say I had a little tear at seeing my sexy studyly steed! Side tracked there - so I thought as I had done in the past we would collect luggage (all 3 cases, and yes a 2/3 of mine large case were shoes) and go out and get an accessible taxi from the taxi rank; travel tip for future travelers to this beautiful city. If you do need an accessible taxi where your chair is not collapsible or the weight of a small car; you need to book in advance. I have since  discovered just two taxi companies which have accessible vans conexxion and Saddlers (although says they're a UK company). Usually you also need to book in advance at the train station you are embarking and disembarking on. We were very lucky to have the airport help desk and guard take swift action, and get us on a train within 10 minutes of realizing this to be our only option. I believe this is was a small miracle on the train companies part - they were ever so helpful.

But what a site we must have looked I was straddling and somehow monkey gripping a small suitcase perched on my foot rest, with 2 back packs and our duty free goodies. My assistant was skull dragging the two big suitcases Luckily our hotel was two minutes from the train station - right next door! It was all meant to be!! We made it to our room dropped our luggage, got out what we needed had a bathroom stop, and headed out to find a bar.

Along the way we stumbled upon one of Amsterdam's famous or infamous (what ever rocks your world) alleys of aromatic smoke coffee houses. We didn't stop, but it is on my to do list (as are many other things in this amazing city) our first bar/eatery was a quaint little place (I ca't recall the name of, but all link to all the places we went when I return home) where we chatted to a local gentleman and just enjoyed the people watching, but on that first outing we discovered bikes have right of way to cars pedestrians scooters, trams, buses, and just about anything they share the road, alley, or footpath with. My companion spent that whole journey dodging bikes running from one side of the road to the other, yelling 'sorry' as she went. I am sure we were pegged as tourists from the first site. In our matching 'homie' sweaters, and 'deer in a headlight look' at times.

We have laughed till our sides ached, and tears poured out, we have taken in people watching, and it's only our second full day today! It's been a dream, or wish of mine to come to Amsterdam since I was a young teenager, and read 'the diary of Anne Frank' and  learned much about the history of this place. To be here is still a little surreal, but seeing it, smelling it, feeling the rich culture and old world charm - I feel so blessed, but not lucky, I've made this happen by choices I've made and actions I've done. I am proud of myself for having earned and worked to get here (basquing in a bit of self appreciation there).

Sadly my lil travel buddy isn't with me on this trip, but he will be coming with WHEN I come back to Europe. I say WHEN not IF, because it's my dream to score a dream job here, for a few years once I graduate in 2015/2016.

It's 8am here, and 4pm at home so it's perfect timing to Skype home.

Until my next travel adventure story,

Stay happy, love life, and laugh lots! Lisa xx    

Thursday, 12 June 2014

VLOG Attempt 1

So, I've not been very active with my online 'diary' or presence (unless its Facebook or Twitter)... Though I have written - or half written a few entries - but have not got round to posting them ... Yet. 

Whats news - well Hunter is now 7 - time flies doesn't it?!? I have 3 more semesters before I graduate, seems like this degree is taking forever, but the learning and challenges are always good to reflect on,  even if they seem painful at the time. I head to Europe in 13 days; first stop Netherlands to meet more of the AssistiveWare team, and do a small presentation for them. Then 5 days R&R in Paris - my 2 must do things there are a burlesque show (of course) and, to put 3 locks on Locke Bridge. From there I head to Lisbon for ISAAC2014 where I am running my first solo (or longest) pre-conference workshop on Intimacy &AAC. I am also doing a visual presentation titles "pictures of you & Me: changing perceptions of a 'traditional family'". 

Life is fun, and hectic as usual, but recently I was inspired to make this VLOG - the quality isn't great - but I thought I would share it here. 

I will be doing 31 days of selfies on my instagram account to capture my adventures through Europe just for a bit of fun; and hope to get time to journal about my experiences which I will share on here (if I don't keep forgetting my passwords). I need to have more brain purges onto paper - so this is the (only) second, of hopefully many more blogs over the next months and years. 

anyway, enjoy the 'VLOG' and as always, be happy, stay positive, and enjoy life!!

With love,


Tuesday, 21 August 2012

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.
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 thats 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