'Inside Out' - Sarah Wong beautifully captures the lives of transgender kids

 "At the end we’re all the same - souls who want to be happy and live compassionately." - Sarah Wong

Huffington Post journalist James Michael Nichols asked Dutch photographer Sarah Wong a very simple, but significant questionin his article -

"Why, as a photographer, is providing these stories and experiences visibility so important?"  

And she answered perfectly.

"...It's very important for society to see these images - there's nothing sensational about transgender kids. Again, at the end we’re pretty much the same: we’re all souls who want to live happy and give meaning to our life and others..."

With the help of Hollywood (and stars like Laverne Cox, Andreja Pejic, Caitlyn Jenner, Isis King, Conchita Wurst) - the public has become MUCH more accepting of people who identify as transgender. Slowly, mainstream TV series are even stepping up to the plate. Hollywood and inclusion? Two words I bet no one would have put in the same sentence 10 years ago.

The point of this post is, basically, society is finally starting to recognise the importance of visibility for minority groups. Positive visibility in the media (usually) translates to eventual acceptance. So - why can't this be the case for people with a disability? We'll cover that in an upcoming post.

Sarah Wong's beautiful images can be seen in her book: Inside Out: Portraits of Cross-Gender Children. Along with words by Ellen Visser.

Available through Amazon.

Conscious or not

Conscious or Not - that was the subject of last week's Insight episode. It dealt with just that - the debate over whether people are conscious (or not) when they sleep walk/sleep talk, when they are in comas (skip ahead to 20mins into the video link for this) and after they 'wake up' and are unable to communicate. The other issue was how do you know if someone is 'really, actually there inside - but cannot say so'. This bought back A LOT of weird, turbulent memories for me. We've all seen the movies or TV shows where nurses say 'talk to the patient, he/she MIGHT hear you'..and then they wake up. Yeah - it's really not that simple. I was placed in an induced coma after my first surgery and like Mary-Louise said on Insight, it felt like I had been buried alive. I was conscious. Initially, also similar to Mary-Louise's experience, I thought I was inside a nightclub in Brisbane, trying but failing to find the exit.  I remember thinking I really needed to call my parents because it as though I'd been in there for ages! Then, I swear I felt the pull of my hair as the nurses were shaving it off for surgery, with one nurse apologising profusely for having to do it. It was truly like an outer-body experience , I was floating on the ceiling watching it all unfold. The next thing I so very clearly remember is being deep down inside a sort-of mud pit. It was cold, dark and scary and I was trying to climb out but every time I tried, I'd slip back in. That stage felt like it lasted for an eternity. I heard nurses talking about their NYE parties...but never heard one, single comforting word from family or friends - the people who were pretty much by my side throughout the whole two-week ordeal. 

'Locked-in syndrome (LIS) is a condition in which a patient is aware but cannot move or communicate verbally due to complete paralysis of nearly all voluntary muscles in the body except for the eyes.'

I suffered a form of LIS for a while after I woke up from my coma. I had no idea where I was. The first thing I remember seeing was a few school friends, all staring at me, some crying and ALL on the left side of my bed - holding my left arm/hand. I can't imagine what I must've looked like...there was only ever ONE photo taken of me throughout my whole hospital 'journey'. The photo above. I never wanted a single photographic record of that horrible time in my life so...not many people, very few actually, have ever seen this image. Just looking at it gives me a sick feeling in the pit of my stomach. Pumped full of drugs causing the swelling of my face and body and a feeding tube in the nose that ended up in there for way too long - all I wanted was a steak burger, I've never been a fan of liquid diets. Retrospectively though, it would be mighty helpful to have SOME progressive photos - even to see the transformation of my hair!

Anyway, the family knew I was 'in there'...even though I couldn't communicate. I could move my eyes. I was responding to stimulus. Therefore, words of encouragement, love, jokes and recounts of daily events outside of the hospital setting were all I heard from family and friends. My Mum has since told me I just had a blank look on my face for ages (I thought I was smiling or whatever the appropriate expression was for the conversation) as my facial muscles were also damaged.

A sort of silent language developed - especially between my younger brother and I (thanks Lew). He became my translator when friends would come visit, filling the awkward empty silence that would sometimes fill the room. Regardless, the nurses and doctors had pretty much given up. It was easier to assume that I'd never progress. So they started talking about my family and I, in front of me. It wasn't pleasant. Especially when nasty comments were being exchanged between staff. Not being able to speak - I could only sit there and cry. If I wasn't in a wheelchair at the time, I would've got up and slapped them.

I'll return to the point of this post - never assume. Treat everyone as if they are highly-functioning individuals with all cognitive abilities in tact, unless told otherwise. That goes for people in a coma, people with a physical disability and people with an intellectual disability. You never know who's listening. 

Watch the Insight episode here:

http://www.sbs.com.au/news/insight/tvepisode/conscious-or-not 

The Walking Dead

Sometimes it starts the night before..before you've even shut your eyes in preparation for 6-8 hours of sleep - you're anxious about how you're going to wake up. With a dull aching, all consuming headache? Sore from head to toe? Unable to string a legible sentence together for a few hours because your asphasia has reared it's ugly head again? Your joints seized up like someone three times your age? Or simply looking like an extra from the Walking Dead. Stroke fatigue is a real and deadly thing - no, I'm not going to savage you if you're in my presence but I will look and act like a zombie when suffering from it. It's not infectious or contagious, it's just something to be aware of. The shit thing about stroke fatigue is, it's not improved by rest. It's just part of life for survivors. Sometimes, it feels as if you're literally stuck in mud field (like a rain-drenched Splendour or Glastonbury) but there's no Interpol, Radiohead or Rufus on stage - it's just you and your exhaustion. You're trying to get outta bed to start the day, whether it be work or play ahead, but motivation and physical stamina just evades you. Every single thing is an effort - even typing...like right now - my left hand feels like a dead weight, because that's the side that is used for everything. No equality here. While the right-side basks in the Melbourne sun, ol' lefty does all the work.

Dressing is an effort with fatigue - sometimes I wonder "Seriously, it would be so much easier if I could walk around like Miley - no effort involved". Walking is an effort with stroke fatigue - the tram should come to my front door, I shouldn't have to walk to it..and dare I say, even shopping is an effort - have you seen the size of the Chadstone? Hooray for online shopping. Now that's just the day-to-day activities that you can't avoid - work is on a whole different level. Six years of uni and nothing prepared me for the toll working (when it's not your own business) was going to have on my health. Whoa. With uni, as most of you know, if you get a decent timetable - you have the option of staying up late and 'studying', then sleeping in until 9 or 10am. You're pretty much in control of the pace you want to set the day at. Working? You're on someone else's clock. Last weekend my body had a tantrum - I awoke on Saturday morning and couldn't move for a couple of hours - literally. Had to stay in bed until my breathing and my back, neck and shoulders would let me move. Lucky I had Kat Moss keeping me company, and my beautiful friend Emily doing a grocery run for me. A home call doctor had to come out and hand over painkillers with a stern look on his face,  "Your body is NOT normal! Stop treating it as if it's normal!!". Thanks doc. That saying - I'm lucky that I CAN work. Two great jobs - so that time, effort and mountains of work at uni did  pay off (as much as I complained while doing it). It's ironic, I started 10 years ago, stuck in hospital in Brisbane after a brain injury that led to a stroke - and nowafter all these years I'm working for the Stroke Foundation in Melbourne. Funny where life takes you.    

A wise young lady once said on this blog "adjust to your limitations" (thanks Meg). Regardless of your situation, that's something we should all learn to do. It's not a bad thing - it is what it is. FOMO (fear of missing out) plays a massive part in everyone's lives..thanks in part to Insta and FB. When you're having 'one of those days' - log off and read a book.   

ASPHASIA & A-HOLES

Love thy neighbour the saying goes...especially in an apartment setting where you're renting, new to the building and stowing away a cat that the real estate don't know about. So, I'm a lil' parnoid about someone...letting the cat out of the bag. 

On this note, I've tried to be lovely to whoever I encounter on my way in or out of the building. A nod and a smile or a polite "hello" will usually suffice when walking past someone in the hallway or in the garden. However, with one neighbour, an actual obligatory conversation is needed. It's a man in his mid-60s who rides a bicycle and sometimes waters the lawn. If you've got an image of a sweet old man with white hair, too-big glasses and a warm smile - get that image out your of head immediately. We were 'warned' about him by the lady who lives next door to us when we first moved in...they had had a history of clashes about body corporate issues and people not parking in their allocated spots - as some crazy neighbours do. We were still to meet this 'despicable man', so we kind of took her warning with a grain of salt. When I met the man a few days later, I wanted to decide for myself. After a few minutes of small talk, our conversation went like this -

"Where are you from?" he asked.

"Brisbane"

"No, originally. Where you born in Australia?"       

 "Yeah."

"Oh, I though you might be Scandinavian?"

"People always say that to me, I guess because of the blonde hair.." I said with a smile.

"No, it sounds like English isn't your first language. You hesitate when you talk like you're not confident with English. You don't speak it very well." He stared at me waiting for some type of explanation.

"Wow. I guess I'll have to be aware of that from now on. Thanks." I said with sarcasm.

"Ahh, don't worry, it's not too bad." 

He gave me a little wave, turned, and went on his way. Me - staring daggers into his decrepit, scaley old back. Asshole, it's actually called having Asphasia. People, like myself, who have suffered a brain injury or stroke sometimes incur damage to a region of the motor association cortex in the left frontal lobe of their brain, causing disruption to the ability to speak. It took me MONTHS to remember how to say "mum" and "me" - that was the extent of my vocabulary for the first half of 2004. Over time however, I obviously did regain my speech but it'll never be perfect. When I'm fatigued, stressed, angry or in front of a crowd - I can get 'lost for words'. I had to re-learn how to speak, spell, form sentences, write left-handed and how to correctly use grammar (i.e. don't judge my grammar too harshly on the website - thanks in advance). So when this old man, a stranger, rudely pointed out the shortcomings of my speech - the effort and hard work all those years ago felt like it had been for nothing. Meaning, the speech therapist should have taught me some quick-witted responses for situations like this - 'how to shut down an ignorant ass 101'. 

I've come across this ignorance many times before, but only a couple of times where the insult is in direct reference to my speech. The last time was at uni. I had just given an oral presentation on American politics to the class and the teacher, a creepy old man called Neil, grabbed my notes and then repeated the entire oral with "ummms" and "ahhhs" and pauses etc, then said "that's an example of how NOT to give a speech" with a nod in my direction. I sat there shocked, mouth agape and stared (with the daggers) right to his face. After the class, I politely approached him, explained Asphasia and why there might've been something slightly unusual about the delivery of my perfectly written speech. His reaction? "Well, I've got diabetes - we all have something to deal with."

I pity these old men whose parents obviously didn't teach them any manners. I can be disgusted, laugh it off and be a little a bit angry for a time, but, for others with speech difficulties - it's not so easy. Their confidence is shaken at the slightest public humiliation (like I faced) and they don't recover. Unfortunately, we've only got control over our own behaviour and they way we respond to others. Their shameful behaviour, you cannot control.

A timely reminder of why I started this blog in the first place - to educate others on the shitty side-effects of having a brain injury. Now that you know many people walk around with Asphasia everyday, sometimes struggle to talk or get the words out right - the lesson is, don't be an unnecessary asshole.                                  

Most importantly, I can confidently order a cocktail - not matter how noisy the bar is.

STROKE

1 in 6, yep, ONE IN SIX people will suffer a stroke in their lifetime. Stroke is a leading cause of disability in Australia and our second biggest killer, behind heart disease. For survivors, it ain't a rosy situation either, trust me, I've been there. 

The blue Stroke Solidarity String that I'm wearing in this picture symbolises the connection between all people touched by stroke, the flow of blood and the healthy function of the brain and body. Stroke doesn't discriminate between gender, age or postcode - it has the capability of touching everyone you know.

Buy a string, wear it, talk about and spread awareness. Purchase here from the National Stroke Foundation.

Most importantly, remember - F.A.S.T - the signs that someone may be having a stroke: Face (is their face drooping?) Arms (can they raise both arms?), Speech (is their speech slurred?) and Time (time is critical, the longer a stroke remains untreated, the greater the chance of stroke related brain damage).

Youth, Youngcare and IKEA

I’ve gone on two Ikea trips since moving down to this city.. They reel you in and you’ve got no chance of escape…. Immersing yourself in the those little display bedrooms, kitchens and living rooms…you feel like the world is your oyster (even though deep down you know the wallet's a little skint and an entire IKEA kitchen is a little out of your price range at the moment). Endless options, endless possibilities. Should I go for the white MIKIE desk? Black for the BILLY bookcase? Usually you end up leaving after five hours with 15 more items than you planned on purchasing or just a cactus and a hot dog (or cinnamon donut in my case). I’m sure most people can relate. The IKEA visit is almost a right-of-passage for young person, first time out of the family abode, ready to start paying all the bills and actually cleaning the toilet yourself. Most of us go home from time to time (or once a week) to chill out, get a ‘Mum made meal’ and use everything (like Foxtel) that you can’t afford at your new pad. Still, you’re living independently, you are officially a grown up.    

Having the choice to live independently – I guess we all take that for granted. I did it in 2007 for the first time, three years into my 'recovery'. Just Kat Moss and I. Awesome little place right in the thick of it. An art-deco pad in an 70 year old building that was originally a brothel. Ahhh...I love a bit of history. It was trying, scary and frustrating at times...watching every season of the depressing (albeit amazing) Six Feet Under during those periods probably wasn't the best idea..but come on, anyone who has watched that series knows it's addictive. I had to move back home 6 months later for surgery but hey, I had fun, plenty of rooftop parties, taught myself to cook in my little kitchen and when I failed, there was great Thai around the corner. But, unfortunately a lot of young folk with a disability don't have the luxury of choice - that choice of their living situation is made for them. Usually a stranger who has no concept of what it’s like to be dependant on another for everyday things. Where they live is out of their hands. Imagine that…This is a perfect opportunity to acknowledge the fantastic work organisations like Youngcare do for Australian's with a disability. Read about them here. I recently interviewed an amazing young girl who's life was changed through the help of Youngcare. Find it on the interviews page.

THE PROM & ALL ITS SIGNIFICANCE...

18 year old Gena Buza is incredible. An artist, a photographer, sister, loving daughter, friend and a quadriplegic. A beautiful series of photos taken by Taylor Baucom capture some of Gena's journey and document that all-important evening in any young girl's life - the school prom. This is one girl who isn't defined by her disability.

Click to see the photos below:

https://goo.gl/58EbFT

12 PAIRS OF LEGS...

Aimee Mullins is an American athlete, actress, model, a leading thinker in prosethic innovation and an amputee. Watch her inspire millions with her TED Talk.