power up

April 19, 2017

had a recurring “nightmare” last night about people seeking any shelter they could find.  What’s weird is that I have a different dream each time I get up from bed but for some reason it just continued where it left off.  I thought I was not really bothered by the threat of nuclear winter but it looks like subconsciously I am.   This just illustrates how, often, control is not in one’s own hands.  Like my mum used to say:  you’re ok but other people might be “crazy”.

strange bedfellows

March 20, 2017

they recently showed the Theory of Everything on free-to-air tv.  While Stephen Hawking is an inspirational figure, he’s not necessarily aspirational for me.  I’m nowhere near as smart.  We need people we can relate to.  I accomplish things because I’m not dumb and work really hard.

I know Dr. Stephen Strange is fictional but I could weirdly relate more to the film Doctor Strange.  I’m not a surgeon but I guess it had to do with embracing the unexplainable despite bring logical.

Strangely enough in the movie Logan, I could relate to both Professor X and Wolverine –   this was the first time I saw myself in two characters.  Maybe it was their “fall from grace” so atypical of a superhero flick or maybe it’s because I’m such a comic book nerd.

Regardless, we’re all different, relate to certain things, and process things at our own pace.  Despite people’s insistence, a single, magic, silver bullet  “solution” doesn’t always exist.  Some issues are divergent or require multiple things acting in harmony.  Narrowing it to one thing would be great but that isn’t always possible.

relativity

January 11, 2017

everyone is entitled to whinge about their problems (or physically express them) but you have to know your audience.  Forgive my callousness but originally hailing from the Philippines where 90% of the population live below the poverty line (despite the majority working extremely hard to improve their lot), having a wife who required a kidney transplant after falling pregnant with our son (she was previously on haemodialysis six days a week and was hospitalised several times and had to be brought in to Emergency via ambulance) and living with an Acquired Brain Injury (ABI that’s unnamed and resulting in compromised in balance and co-ordination) for nearly a decade some issues seem like “high-class” problems to me.  It’s not that they shouldn’t complain but choose carefully the person(s) to share it with.

I know I should be more empathetic but it frustrates me when people feel entitled – ever seen the film, Blue Jasmine.  It’s just people should learn to adjust and adapt to their circumstances – all of us have our own crosses to bear but, with me, for the most part they’re barking up the wrong tree.

an unexpected journey

December 29, 2016

been under the weather lately and it’s caused me to reflect.  Haven’t done my daily exercises now for three days as I’ve been feeling really bad (it helps keep my body weight at a level I can physically manage and releases my endorphins to help me cope).  Living with an unnamed neurological condition for nearly nine years (with relatively stable symptoms) and my recent health issues has reinforced that control is an illusion and that I better make hay while I still can (not to be overly dramatic but more realistic).  Admittedly, it’s hard for me as it’s not my personality and I was brought up to place other’s needs before mine (so much so that I don’t REALLY know what I want).  It’s not easy but I should endevour to put my and my family’s enjoyment first (even if it runs contrary to the delayed gratification I was earnestly taught).  Everything considered, I will continue to set aside funds like I  previously learned to manage money.  Enjoyment shouldn’t be an excuse to shirk responsibility.

we recently came back from an interstate trip.   we watched a concert, ate somewhere I wanted to go and caught up with good friends while we were there.  I don’t say it enough but I had a wonderful time with my family. I reflected on what I have (hopefully I’ll be more conscious of the things I need to be grateful for).

In some ways it’a blessing that my condition is unknown – that way I don’t have a set expiry date and are encouraged to make the most of each day.  I don’t know when “my last good day is” so I should try to make the most while I still am able to.

It’s true what they say:  something just clicks.  It’s not about when other people prescribe  you should be “ready” but when you realise it for yourself (for some it’s about “hitting rock bottom”).  It’s about others facilitating but not dictating.

I’ve made a deliberate choice to try to make hay of the resources given to me while I still can (but still remaining pragmatic – I’ve a son and wife after all).

not so very good bad day

December 14, 2016

yesterday, everything that could go wrong did.  There are just days like that – it didn’t help that I couldn’t exercise the day before (it seems that’s how I deal with stress).  I’m not a big fan of disability being used as inspiration porn – it’s merely a snapshot and we experience bad days too.  Some times are like insurance write-offs – we should be allowed to feel grumpy occasionally (although knowing my personality, I’m surprised this doesn’t occur more often).   We’ve just learnt to deal with the situation and put one foot in front of the other.

Some people use reality tv (and disability) to feel better about their own lives.  Other people’s plight should be a source of empathy or compassion and don’t exist for others’ motivation (if it “inspires” you to be a better person than well and good but if it only stops you from whinging because you feel lucky or blessed then deeper reflection is needed).

Everyone likes to watch fails (myself included) – experiencing Schadenfreude is natural for humans.  My own experiences leads me to believe that externalities as a source of joy can’t compensate for the “emptiness”(they can only make life more “bearable”).

universal (soldier)

December 7, 2016

As an alternative, I wanted to study architecture at university but instead I took computer science at another institution: both interested me and I’m not sure why I chose one over the other. Afterwards, I was invited to teach at my alma matter.  I have since experienced a revolving door between academe and industry and at times having both feet on “contentious” worlds (perhaps, this is why I strongly feel “faith without works” is not enough).

I’ve always admired “good” design. Usability has always fascinated me and acquiring a brain injury has made me more so.  I am not a big disciple of fate but it’s only natural that I find Universal Design appealing. It seems to be a confluence of interests and experiences that is beginning to define my path.  Admittedly, I still have a lot to learn but at least it’s an option for me.

I can understand why heritage or old buildings have their accessible entrances at the back but there is no excuse for “newer” stuff – we shouldn’t be considered as second-class citizens (even when it’s not intentional).  It disturbs me when toilet doors are too heavy or they swing towards (or the space is too cramped for) our mobility devices – even if they don’t have personal experience with this, they should be made aware and conscious of these constraints.  Don’t get me started on physical environs that do not a disability toilet (or lavatories that are accessible) – rails allow us to use the facilities independently.  Some even use it because it’s more “spacious” when they don’t really need to – never mind some people with disabilities find it hard to hold it.  Toilets generally “smell” because people prefer to use it when they have to do a No. 2 instead of the standard allocated cubicle.  Moreover, some non-disabled users have the audacity to be upset when you enter (because they don’t know how to lock it) or are surprised when they encounter you patiently waiting for them to finish. Having a child of my own, I understand when parents accompany their kids when family rooms are not present.  It’s people that feel they are more important than the rest and who shouldn’t be made to wait their turn that gets my goat.

Where I’m originally from (I’m not aware of the law now but I doubt, it’s changed), an elevator was only required if there were at least five floors (I’m told that’s why our school building was only built with four).  I can manage stairs if my hands can “reasonably” hold onto the rails (it just takes me awhile and some effort) – what about most?  Are they excluded from these?

Some ramps have a “steep” incline (assuming one is in a wheelchair being pushed) – what about those who choose to propel themselves or ambulate independently?  It can not be simply for compliance sake but the spirit of is just as important as the letter of the law.  It should be because of compassion not coercion by government or regulatory bodies.

I’m not a fan of people who take disabled parking spots (when they clearly don’t need it) for the sake of convenience or because it’s nearer to the entrance (I’ve even seen one parked perpendicular occupying two slots).  They don’t want to walk “that far” – screw (pardon my language) the patrons that can’t walk.  It’s this type of insensitivity that can lead to resentment.

This is by no means an exhaustive list but one informed by my own negative experiences. Some people are just ignorant or not sufficiently exposed to the “everyday” plight of persons living with disabilities.  Our purpose should not to shame or guilt (tempting as it is given the number of a**holes) but to educate the public.

I am not an activist, by nature, (I like to think of myself as more of an advocate) but I can understand why so many rail against the traditional view of the medical or deficit model of disability.  Where I’m from, many with impairments are not educated and are kept home-bound (to spare stigma to the rest of the family in the guise of providing comfort).  Not surprisingly, I am a supporter of the social model: after all, disability is a construct or consequence of a society.  This is more pronounced as we shift from being a highly industrialised to an information-based economy. While physically we may not be the ideal, there are other ways we can contribute  – accommodations are typical but how things are designed in the first place can maximise our value-adding potential.  Trite as it may sound but the focus should be on ability and not disability.  I wonder how Darwin would have documented this evolution of species.