January 13, 2017

my wife’s grandmother is turning 100.  We will attend the celebration. She has a big family (180 guests, 120 of which are relatives) so we’re staying offsite.

What’s special about her is that she still has her mental faculties and some of her physical acuity (in fact, she still does the household laundry).  I think her “secret” is constantly being and remaining active.  If I ever manage to get close to her age, hopefully I’ll be the same.

As I will have intermittent Internet access, you might notice a “slight” hiatus but I’ll resume this when I get back.


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.

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).

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.

patience (is a virtue)

November 29, 2016

we are born with two ears and one mouth – having difficulties speaking has led me to listen more (but that deserves another entry of its own).  Common practice dictates that you should hold off for 24 hours on sending an emotionally (or alcoholic) induced e-mail, text or tweet (much like counting down from 10 or taking long, deep breaths can aid in dissipating excess emotion). If you still think it’s appropriate later on then go for it – I guess making it difficult to type has its perks and writing a post over a few days helps me to reflect and reevaluate more.  Despite my Vulcan-like demeanor, I exhibit more human behavior now. If I still really feel strongly about something, I can blog about it.  That said, my words need to be tempered by the saying: “it’s easier to condemn than to convince.”  Sure, sometimes it’s hubris but at times it’s simply therapy, expression or observation.  This is not a “manifesto” to abstain from commentary, it’s just one should be able to distinguish what one’s true purpose is.  Having a combination of these factors is not necessarily a bad thing:  it’s being conscious of what’s subjective versus objectivity that’s important.  Intentions (and motivations) need to be transparent.

A “wise” editor once told me that everything is political and that being apolitical is a political choice.  I’ve since embraced this tenet – after all, our thinking is not only a function of our genes but also of our experiences.  Sometimes it can look like I’m fence-sitting when I just don’t have enough facts or am considering the nuances – the devil is in the details after all.  The question I ask is how, if at all, does this affect me or my family?  Sure, I’ve got opinions about many things but does it really matter in the grand scheme of thing or is the motivation so that I feel better.

I used to think that it was “simply” a matter of quality over quantity.  But to paraphrase the Pulitzer-prize author, Jennifer Egan, one needs to write regularly, even badly at times, to be able to ultimately write well.  In this vein, I pour my writing into one document – not everything makes it to be published under my blog; not everything is meant to be shared with the rest of the world (some are best left as “inner” dialogue – look at the trouble Homer’s gotten into throughout the years).   That said, perfect can be the enemy of good so it can also be helpful to get something out there and not “oversanitise” or self-censor everything.  From experience, some comments can be constructively critical and useful for refining your thoughts and others you need to consider with a grain of salt (public spaces can be a great boon but also a huge bane at the same time – wisdom of the crowd vs. trolls and haters).

better man

September 15, 2015

as Jefferson and Biden’s mum articulated: Nobody is better than you but you are not better than anyone else. The former was deeply ingrained in me; the latter part is still a lesson I’m trying to grapple with.

“Better” is best used as an adjective for a given criterion and applied with, as the MOVER’s of La Salle used to espouse, S.M.A.R.T. (Specific, Measurable, Achievable, Relevant, and Time-bound) characteristics – may be not the ‘A’ so much, it is for goals after all.

We would empathise with others more if we tried to refrain from judging them immediately. Admittedly, it’s not always easy. That said, there are people you don’t like, don’t get along with or who don’t think like you. Give them time and the benefit of the doubt but you’re only human after all and you’ll eventually choose to avoid them. That’s quite understandable.

It’s blanket thinking and attributing traits to all that’s the real danger. It is being conscious of generalising the out-group, forgive the psychological jargon, and treating them as individuals instead.

better days

October 28, 2014

To paraphrase an expression from the cancer community, you can either be bitter or better. Not to be melodramatic but the same applies to living with a disability.   I’ve felt both – more of the latter lately. All of us with a “problem” can be overwhelmed – there’s no monopoly for this it’s just certain cases are “easier” for us to understand. I know logically that statistically speaking, there are no “bad” days but it sure sometimes feels that way – so does it really matter anyway. Perception is often considered more than reality. Having a shitty day affects our mood – it’s alright to feel this way as long as we keep this to a minimum and are fully aware of our resulting actions (at least that’s what I tell myself) . I’m Human after all and not an Econ. I can’t always be rationale (although generally I think I am). I’m not always logical or an automaton despite my computing background. I’m no paragon of how to behave but I think (hopefully) I’m gradually getting better at accepting it. Like an addict you’re never completely “cured” – every day’s a struggle.

Things won’t necessarily get better as the day progresses but my attitude and how I can handle things can certainly improve. It’s hard for me because my worldview is closer to Marc Maron than it is to Polyanna. Like Jim Jeffries in Legit, I should learn to just make the “best” out of “bad” situations. In short, I should try not to be so grumpy all the time.

I felt like this before I acquired my disability and I feel it now. Some of my views have changed but not all of them – surely in my case it’s just not solely out of life experiences but exposure to others’ thoughts. I’ve used exercise as an outlet lately but have to write sometimes even if it’s difficult. The former doesn’t allow me to express myself and have a “voice.”