last night I woke up from a dream and couldn’t breathe and get back to sleep – had to sit-up to facilitate the airflow.  I think I experienced what I can only describe it as my first “panic” attack – it felt similar to one of my claustrophobic bouts. Maybe I’m just “slow’ but after nearly a decade after my unnamed ABI, it was my first dream that I could remember where I was “disabled”.  Maybe it was acceptance or realisation. Or (seeing as it’s been really cold lately) I only do half of my daily exercises.  Or the news feature on assisted dying and how close Victoria is to passing draft legislation.  Regardless of what brought it about, my family is better off with my pension, so I better continue to suck it up. I’m really tired – I just need my “second wind”.

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celebration

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.

clusterf**k

December 30, 2016

At business school, I was taught about clusters and diamonds.  Given the “horrendous” traffic in the Philippines, I think we need to consider other models which may co-exist with these.  Sure, zoning is a definite constraint but we need to plant local opportunities:  where “quality” jobs are available nearby instead of the CBD (where people need only travel within or to directly adjacent municipalities or towns).

This might spell a boost in employee productivity and this will definitely improve the quality of life of people.  A ‘win-win” as it were: we need to move away from “zero-sum” thinking.

This may not be in line with “conventional” wisdom but we need to try something different.

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.

back to the future

October 21, 2015

Marty McFly is supposed to come back today. While this is just a movie, there are few things we can take from this.

Sure, most futurists would think it foolish to specify a date but a target is often necessary to achieve most things. Not everything will come to fruition as evidenced by the movie but it is important that we strive for our goals. Making things explicit comes back to accountability. It announces our intent and helps track our progress – it tells everyone and, more importantly, ourselves if we are meeting the schedule. A timetable is one of the conventional requisite yardsticks for measuring “success.”

Most people do not provide a reasonable timeframe. Deadlines need to be realistic and achievable. Estimates need to be based on experience – our own or from a trusted source.

Sure, certain things matter and are important but we should learn not to take our endeavours too seriously.

mind over matter

October 20, 2015

It takes about ten times as much effort for someone who has Cerebral Palsy to do things according to RJ Mitte. In my case, it’s possibly half that – say five (using my best guesstimate).   The medicos aren’t quite sure what I have – heaven knows they’ve run a plethora of tests which all came back negative. Thankfully, it seems not to be genetic as I’ve got a son. They often refer to it based on my symptoms – as I have quite pronounced co-ordination and balance issues. I suppose not having a name for it is beneficial in the sense that there’s no label to categorise me under and just deal with me in a fixed way. Sure, not knowing was difficult at first as I wanted to perform the recommended steps and seek out the most appropriate forms of treatment (from the start, I haven’t been prescribed any medication for it) but in a roundabout way it lead to more direct acceptance – it emphasised that control is, ultimately, an illusion.

When I perform certain actions, I don’t expect awe but simple acknowledgement – sure I was brought up not to notice certain compliments but the fact remains that people don’t say it nearly enough. Honestly, I often get frustrated when people don’t give certain things much thought and just assume most tasks are “easy.” I can do some things because I try hard and exert a lot of effort – not to blow my own horn, but some people can’t do what I can do. It may seem counter intuitive but I have to concentrate when the physios ask me to relax or “go floppy.” The reality is that there are now actions I find challenging – sorry to disappoint but I now need help with certain things as I can no longer perform them on my own – I do what I can but some things take a lot of time and effort if no assistance is offered. Sure, there are things I can do on my own but things would go a lot faster or smoother if done for me instead. It sometimes doesn’t matter if people are exposed or what you say – some of them simply generalise to others their own experiences. People can fall into the trap of wrongly assuming that what’s “easy” for them is “easy” for everyone else. I find what they say about assumptions, not necessarily “truer” but more poignant now.

a rock and a hard place

September 13, 2015

as a person living with a disability I’m usually caught in the middle (as I suspect others are) of, as Graeme Innes has put it, the soft bigotry of low expectations and the pervasiveness of “normalcy”.  The former often comes in the opportunity depravation, particularly employment, and the latter is often exemplified, not to be crass, but by toilets.

We do certain things because we want to or we have to and our actions are not meant to be “inspiration porn” as the late Stella Young said.  Most people make terribly wrong assumptions because they are legitimately ignorant:  they’re either uneducated or unexposed.  That’s why advocacy plays a key role.  A few, often loud, people are just plain stubborn or hateful – I often have to bite my tongue and remind myself about what Bismarck said about arguing with fools.