Malaysia is a weird country.
We do everything to protect disabled children and try to let them grow healthy and strong and smart.
BUT once they are grown they aren't allowed the ability to find work they want in the companies that have accepted them BECAUSE these companies aren't accessible and don't have disabled friendly facilities.
They aren't allowed to be independent BECAUSE everything around them wasn't made to allow them to do things themselves.
So how then, you've raised a disabled child to believe in themselves but society hasn't fought enough for equal rights to life and living because adults aren't as important as children.

When I think of this, I come to a conclusion that you should have let us die.

Also,
I just found out that Malaysia is a State signatory of the UN Convention on the Rights of Persons with Disabilities which I find interesting because nothing is done to follow this pun.

Also, someone wrote an entire Journal on Employment of PWD in Malaysia: Drivers and Inhibitors and it looks like there's more inhibitors than there are drivers.

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Today we talk about mobility devices that have allowed PWDs to explore terrains in non-conventional wheelchairs.

http://www.delichon.uk/shop/hippocampe/beach-wheelchairs

Who Are You? Who-who, Who-who...

Who are you when no one is around?

"I am nothing and everything in it’s entirety"

- Martrice

I read this question on Quora last night and it's so incredibly interesting. Who AM I when I'm alone?
I'm the me-est me that ever could me, that's who.

Pajamas, binging on information, multitasking.
(Speaking of multitasking, I need a second screen)
Depending on who's in the house, calm and reserved or beyond paranoid that someone was going to barge into my room and try to have a conversation about something irrelevant while I'm trying to read, do work or watch something important.

I'm what society deems as callous, withdrawn, self-absorbed, ruthlessly autodidactic, nitpicky.
No airs and no walls around me because I'm not being judged.
I decide when and how I want to feel.
I smile when I want to, I cry when I want to.
I'm gross and contented. Happy, fat and lazy.
And in my pajamas.

BUT here's the kicker. I need to go hang out because I like socialising and being at home alone saps me of my energy and mirth, I'm extroverted. I need to go outside to remind myself why I don't like most humans.

Segue to...
Inspiration porn and why it's so difficult to explain it to people.
THIS PIECE was truly witty in trying to do just that and actually does a really good job!

Which brings me to why Inspiration porn is bad...
When one is afflicted with some kind of disability, one is constantly reminded that one is an inspiration to all simply because one has the outward appearance of super positivity. Therein lies he problem. Us disabled people have now been dehumanised because we CANNOT and MUST NOT complain because it makes the average person feel bad. boo-hoo.
I know it's easy to just tell us to try and open up now, as adults. Do you know how hard it is to change something hardwired in yourself to not do because everyone else gets sensitive when you get just a little bit emotionally negative? And they ask me why I'm dead inside, why I'm so cynical. Pft. It's because of all you special snowflakes.

Overall, I can safely say I'm still beyond pissed I can't work in an office of my choosing (who've accepted me prior and I had to reject) because they didn't have the facilities for disabled people.
Do you know how bad for your body it is to not be able to drink water because going to the bathroom is hell? I know, right? Who would've thought bathrooms were one of the most important things to humankind. BUT IT IS.

Walk the talk, Malaysians. You keep saying you're for inclusive environments but I haven't seen tangible progress!

While the 30 Day Video Game Challenge is happening, I think i should post something in the interim.

I have been invited to take part in a Design Leadership Program (DLP) but d.labs run by a former boss of mine. First week has been completed and there's so much left to do

Being a 4-week intensive, we were already given several tasks to do. Simple tasks like describing myself, my work, my past projects. The most interesting one was to Draw My Future.

It's based on the TEDtalk below.

Based on what Patti said...
What I drew looked like a 5th grader took a shit on an A3 paper.

BEHOLD, MY WORK OF ART!

(click image to read)

There we go. On the left we can see that I have gone back to my generally angry and dissatisfied ways. At least anger and dissatisfaction brings about change if I fight hard enough.

Tangent: During DLP last Saturday I had the most vivid case of deja vous. I had been there before. In my dream a long, long time ago. It was funny though because I was trying to explain a concept to my team but as I was explaining, the sense of being there before hit me so hard my explanation slowed down. I felt like I saw a ghost of what was.

On a side note, I want to talk about the current reveal for a treatment drug for SMA called Spinraza.
On one hand I'm absolutely elated. On the other hand, the price it's been given doesn't bode well for any one of us. Getting treatment with an orphan drug means that I have to probably be poor. Which sucks. We hope more drugs in the pipeline gets approved soon.

Soooooooooo Inspirationaaaal...

Nak marah jap. Prepare your eyes for capslock swearing.

I warned you.

I hate inspiration porn when it comes to PWDs (like me) being objectified because wooopdeedooooo we're doing something that abled people can do because woooooooo we're disabled.

WE'RE DISABLED BECAUSE YOU SICK FUCKS DON'T GIVE A FAT FLYING SHIT ABOUT UNIVERSAL ACCESS!

One example is when people go "please vote for this video because blablablabla" and the video is showcasing a bunch of PWDs being afforded a few days of diving by some nice people who think they're making the world a better place because look at me, I'm helping. Wooooo~

NO YOU'RE NOT HELPING. YOU'RE JUST MAKING FUCKING INSPIRATION PORN SO YOU ABLED PEOPLE CAN JUSTIFY NOT BEING A BUNCH OF LAZY GITS.

Let me explain to you how inspiration porn works.

Average lazy human being stumbles across a post that showcases a PWD doing the thing that they're supposed to be doing but it's a bit harder (but they have to do it anyway because life). Average lazy human sees/watches this and starts going "Oh, man... If this crippled can do it, why can't I? I should be able to do this right cos I'm abled."

I want to slap you so hard with your privilege. 

(https://youtu.be/UD-y6u5YbWE)

Click the link if you must.

So I wrote a response but I don't think anyone will have a second pass at it. Here's my schtick:

If you want to oggle inspiration porn, I'd like you to put yourself in our shoes. Which of our needs are not met within your locale and how do you fix it?

Go out there and find ways to make it a better place for all of us to interact with and experience.

Seek help in making it a safer, more accessible place for all of us.

Let me tell you a little secret.

Anyone and everyone can become disabled, and often, suddenly. So, no, don't get off your little high horse but think of the day where that horse bucks and you lie in a pool of stupid with your broken legs.

Then will you start thinking about what we have to go through as a PWD... because you're one too.

Driving Miss Angry

I want to drive a car.

To have a car but not be able to drive it is hands down one of the most frustrating things in the world.
Then I found out that Hospital Rehab Cheras has a Driving Simulator.

Catch 1: Right now the driving sim is broken and we don't know when it'll be fixed.
Because the government agencies are famous for tardiness... unless we have to pay them for summons or whatever. Bastards.

Catch 2: The driving sim operates on a pull-push system for acceleration and breaks which I find a bit clunky so I did some research.

EMC AEVIT 2.0
This system is used heavily in the US to enable people with various disabilities, the ones I saw were paraplegics who wanted to function normally without the absolute help from others which I also need. Autonomy is king! SOVEREIGNITY IS KING!!!

It doesn't use a push-pull system but instead a series of monitors and joystick type things... it looks super easy to work with and also very close to how a game pad works... This is good. Why?
Because I can drive in videogames.

Catch 3: Getting into and out of the car.
I don't have the typical wheelchairs that you can drive into the car and start driving straight up because I use a Travelscoot. It's more like a tiny motorised tricycle which means I have to get off it and go towards the front of my car, maybe with the aid of crutches. How do I load up the car with the scooter?

Something like this... Hoist lifts (This one's called the Armstrong Lift but I expect there to be more types out there).



Because I have issues with sit to stand, getting into the car will not be a problem provided it's a car close to my height getting out on the other hand... maybe a little bit more difficult. What systems can I put in place to make sure I can get in and out safely? (Aside from getting a tall-ish car straight off the bat). I think my only option is to have a slighly taller car. It's also good so people don't bully you on the road which is always an issue in Malaysia.


...
I think having all these mods would definitely make it amazingly easy for me to drive. It also makes it a very attainable goal. Cheers to me! If this works out, we'll figure out how to monetise this so that other OKUs can drive too.

VIVAMUS MOBILITATEM!

Playing 'Urgent Evoke' as a method to exercise my thinking outside the box.
It's basically an online community gaming thingy which asks you how to save the world.
The year is 2019 and the world is going to hell in a giftbasket and it's your duty to stop it by coming up with innovative ideas to solve world problems like famine, water shortages and disease.

Here's my first entry as proof that I've learnt something, it's called 'Think Big.":

Think creatively: start big, use constraints as a filter and find the simplest solutions.

- Paul Polak via Nextbillion

I had always been awestruck by how some people can manage to come up with the most supreme idea and produce it in such a way that it's cost effective and just plain works. My ideas have been, by far, off the wall and nigh unattainable because it just has too many real world constraints.

Naysayers tend to get the better of me thus preventing a potentially good idea from flourishing and reaching its intended audience. This is mainly because I forget that to think big is just a one of the key components out of a two part recipe. Filter, as Paul Polak so put, comes after the infinite magnitude of the idea. Filtering takes away the unnecessary bits, eliminating redundancies and what you're left with is the essence of the idea and a base platform to rebuild with the constraints in mind.

Cost, distribution, public awareness, public acceptance. These are some of the constraints that are feasible. We're not doing magic. We're making the world the eventual Utopia of sorts. So think big!

So yeah, here I be, waiting for my team-members to CC to me a copy of the research findings so I can finally finish the stupid report because my email hasn't received it... at all! I don't understand... :(

Edit: I sent her my part because I need to go to sleep -- I lied. I should go to sleep. I have to be up at 7AM. But. I just don't want to yet.