coffee: on the ‘power’ of being able to do small things

at first i thought it was just about the coffee seeing as i enjoy the stuff. so what’s different?

my neurophysio had suggested a keep-cup several months ago since i couldn’t handle ‘traditional’ drinking vessels (straws are great for ‘cooler’ liquids but not so much for ‘hot’ beverages). i was thrilled since it had been over a decade i could partake this concoction on my own without my wife’s assistance. trouble was, although we had a coffee machine (French Presses – i had several throughout the years -work well but i can no longer safely use one) that needed pods. sometime i got in one go as you had to drop the pod manually but at times it took me several attempts (or failure to operate it all) since it required a certain ‘dexterity’ for it to function properly. looking back at it now – it might be silly – but i quit using it probably because of frustration.

my wife bought a new one for me for Christmas. i’m still getting the hang of it but it seems ‘better’ than the previous one – it must be good as it was highly recommended by her niece and the price hasn’t dropped for about two years since it was released (despite launching a more recent model).

sure, i appreciate a good cup but as i reflect on it that probably isn’t the primary reason why: it’s the ability to have one when i feel like it and not be beholden to anybody’s timetable. i only realised now it was a ‘coping mechanism’ – a way to keep my mental health (i’m probably attributing more to it but i don’t have a lot of vices). it isn’t a ‘life hack’ but impactful to me. i suspect it’s not really that others don’t share these ‘tips’ but how can you find what you need (or want) given the ‘sea of information’ available? it shouldn’t take years…

in your NDIS plan there are goals but to someone that developed ‘low expectations’ over the years, this might seem ‘big and ‘overwhelming”. aside from never being asked before, these might be difficult to achieve. i think we need help to break this down into subgoals – then those further into ‘achievable’ steps. IMHO, this doesn’t only lay the ‘groundwork’ as it builds capability but, importantly, also the confidence to try to challenge yourself. i’m sure much smarter and wiser people have come up with this idea before – the question then becomes: why don’t we know about it?

NDIA: on confluence and variation (4 of n)

i’ve listened to Episode 3 (what i refer to as ‘A tale of Two Agencies) of “A Nation Changed with Kurt Fearnley” podcast. if you’re interested, the link is at: https://hireup.com.au/anationchanged/?source=google&medium=paid&campaign=11763859582&adg=115869528924&key=%2Bkurt%20%2Bfearnley&ad=483695209424&position=&type=b&gclid=Cj0KCQiAtqL-BRC0ARIsAF4K3WEUh-b-7WYns3PSnk4nDDTYlYoSzl86p0k08WXAarigHmnLavAtIJMaAn52EALw_wcB . There are four parts and i’ll continue listening as i find it informative.

this documents the ‘extreme ‘ experiences that persons with disabilities have had in dealing with the agency. and while i understand why these anecdotes were chosen to illustrate this dichotomy given practical time-constraints, i suspect that the majority of encounters (like my own) are a ‘mixed-bag’ and fall between the spectrum of these polar opposites. i can’t really fault the producers for taking artistic license and using “the good, the bad, and the ugly” approach as this os both simple and powerful – hell, i’d probably do it myself given the circumstances. it’s hard not to be affected by the legendary story of a government assessor asking an applicant if Downs Syndrome is a permanent condition.

i think it’s useful not to label the entire experience (although quite understandable). it might sometimes be more ‘actionable’ to provide ‘dissected’ feedback. i’m sure there are a lot of stories that outline what works really well and those things that leave a lot to be desired.

NDIA: on confluence and variation (3 of n)

i’ve listened to Episode 2 (what i like to call as politics and ‘birthing pains’ of the NDIS) of “A Nation Changed with Kurt Fearnley” podcast. if you’re interested, the link is at: https://hireup.com.au/anationchanged/?source=google&medium=paid&campaign=11763859582&adg=115869528924&key=%2Bkurt%20%2Bfearnley&ad=483695209424&position=&type=b&gclid=Cj0KCQiAtqL-BRC0ARIsAF4K3WEUh-b-7WYns3PSnk4nDDTYlYoSzl86p0k08WXAarigHmnLavAtIJMaAn52EALw_wcB . There are four parts and i’ll continue listening as i find it informative.

admittedly, it’s ‘problematic’. it reminds me of the old adage: “perfect is the enemy of good.” Sure, it’s not ideal (something seems better than nothing in this case) but supposedly there were (and are) several opportunities for improvement that, overall, seems ‘reasonable’ to me. it was brought forward and the nomenclature of the ‘pilot’ areas were changed for political reasons (i don’t fully subscribe that the justification given was the sole one but that’s a different discussion…).

i knew there were staffing shortages but was, until now, never aware of the extent. the shortfall ‘explained ‘ (and didn’t justify) delays in what i considered straightforward requests. it’s still a bit ‘slow’ (which is understandable given current constraints) but i welcome efforts to gradually increase staffing.

numbers aside, it would be enlightening to know what people think are the other staffing-related issues…

NDIA: on confluence and variation (2 of n)

i’ve listened to only the Introduction and Episode 1 (dealing with the history and evolution of the NDIS) of “A Nation Changed with Kurt Fearnley” podcast. if you’re interested, the link is at: https://hireup.com.au/anationchanged/?source=google&medium=paid&campaign=11763859582&adg=115869528924&key=%2Bkurt%20%2Bfearnley&ad=483695209424&position=&type=b&gclid=Cj0KCQiAtqL-BRC0ARIsAF4K3WEUh-b-7WYns3PSnk4nDDTYlYoSzl86p0k08WXAarigHmnLavAtIJMaAn52EALw_wcB . There are four parts and i’ll continue listening as i find it informative.

some may be immediately turned off as it’s a sponsored link (viewed as having a specific ‘agenda’ – a wise editor once taught me that even being apolitical is a political choice). over the years, i’ve learned to take things ‘critically’ – take everything with ‘a grain of salt’ and consider the source. one can, after all, select portions you give credence to – this blog included. IMHO, a dose of skepticism can be quite healthy as long as you’re careful not to let things devolve into ‘mere cynicism’.

it would be useful and interesting to get other peoples take on specific parts…

NDIA: on confluence and variation (1 of n)

i booked a NDIS plan update review today. unbeknownst to me (later i found out from the news), it was International Disability Day – which just showed the level of engagement i had. i’d take it as a sign if i were so inclined. while i, by and large, have had a ‘technically positive’ experience with the NDIS (as i can now afford ‘stuff’ as most were out-of-pocket expenses), i had ‘mixed’ encounters with the agency. And while it is said that the majority of cases are ‘good”, it is vital to understand and empathise with the frustration others have had navigating a ‘complex’ and ‘convoluted’ system (i consider myself reasonably clever but it was only with the help of a support co-ordinator that i finally understood some parts). the question then becomes: how can we minimise (although ideally, from my ‘experience, it’s unlikely we eliminate) these issues that contribute towards negative encounters?

while it can be ‘easy’ to appoint ‘villainy’ to certain individuals (granted, it’s ‘difficult’ to detach from this emotion when you’re involved in certain circumstances – myself included), it can be more productive to try and address ‘systemic’ issues. there’s still ‘a heap’ (i believe that’s the technical term for it) i need to learn about ‘disability’ (my own lived experience aside). for example, i think i know the ‘basics’ of the social model but would benefit from a ‘deeper’ understanding. i would like to learn more about ‘disability’ (as i’m just ‘wired’ that way) but would greatly appreciate the time and effort to share things with me not just so i can benefit personally but spread the lessons others need to know as well. i also learned about Kurt Fearnley’s podcast about the NDIS (“A Nation Changed”) today so i will check it out (despite not really big on those).

i’d like to know if my thought process is ‘sound’. case in point, i’ve always thought that the concept behind the NDIS can be related to the concept of “compassionate” capitalism practised by some Nordic countries. i might be jaded but ‘altruism’ is only ‘good’ at the start and difficult to sustain. instead, it can be more pragmatic to consider the psychological tenet of WIIFM (What’s In It For Me?). how can we ‘incentivise’ individuals to act to achieve a desired outcome? i think most people ‘stop’ at just looking at it as compassion (purely a cost), when we can also sell it as a ‘boost’ economically. most ‘actively’ spend their budgets. the majority of these are service providers – most of which are small businesses. my thinking is that most allocations will be spent and ‘flow’ back into the economy – i think this is an opportunity that Australia can leverage. is that too over-simplistic?

the “eyes” have it: on double vision, “blurriness”, balance, and depth perception

i have something called nystagmus (that’s a fancy way of saying my eyes dart around involuntarily). it’s not very pronounced so you need to consciously look for it. it manifests itself by me not seeing “very far”, my central vision being “blurry”, and my inability to read subtitles now – i use a magnifier when the fonts are “too small” as glasses don’t really help since it’s not a “lens” (the irony isn’t lost on me since that’s how my family and childhood friends refer to me) issue. my depth perception is compromised – i’ve always known intellectually that this is a likely effect but for some reason i only made the “connection” a few weeks ago. it’s more obvious to me as i played a lot of point guard in basketball and had a “decent” outside shot (i was particularly “skilled” at making free throws) – i now have trouble catching and throwing a ball.

the good thing is that i should have double vision but my brain compensated so i don’t experience this phenomenon and don’t get headaches. unfortunately when people should see two usually, i don’t based on my neurophysio tests.

balance can also be affected (that’ why PTs ask you to close your eyes to make a task “more difficult”). fortunately, all the core work they’ve asked me to do lately helps make this less of a factor.

i wonder how i’ll cope if i lose my vision entirely as i rely on a rollator frame and am claustrophobic…

hard yards: on walking outside as possible therapy

i was at my weekly neurophysio appointment yesterday for first time in 2020. since it was the session of the new year, she asked if i had any goals or specific plans for this year – honestly, nothing came to mind and i hadn’t really thought about it.

she reiterated that my daily exercise routine was meant to improve my stability and balance. and that “putting it together” in a regular walk outside might be beneficial for me. i wouldn’t impose on my wife as she is tired from work and does household chores. although i exercise everyday, the last thing i want to do is go out exercise and do more of it.

so it might be more practical to arrange an NDIS-funded carer to take me for a walk. i sometimes already do this indoors in our “long” hallway at home so you might be perplexed. i’m not very confident walking alone on uneven surfaces. i was given an “assignment” before to walk around our house – case in point, i only tried this once as aside from it was slow going my walker kept getting “stuck”.

she thought walking outside may be beneficial (she was even willing to write the NDIS a letter to support an increased funding for this activity). i did some digging and i think it’s prudent to arrange a “trial” first using my current plan before “committing”to it in full.

nothing to see here

i came from my neurophysio the other day and a cab driver asked me, “what’s your problem?’ For a moment, i was tempted to answer: “Nothing. What’s yours?” i said the doctors don’t really know and just kept quiet for the rest of the ride – it would have been unfair of me to “pounce” on his ignorance.

there are systemic vestiges of the sigma of disability – that’s simply the reality.  i laud all those that want to change this but the pragmatist in me knows we are still far-off despite all the strides forward.  Pardon me getting on my “soapbox” but the encounter made me reflect.

The NDIS, although its implementation is very “problematic”, IMHO is very good in principle.  However, the reduction of my allocated funding by tens of thousands in the pursuit of the “almighty” surplus seem like a scenario to “rob Paul in order to pay Peter’,  I’m not an economist but encouraging the disabled community to spend can help “stimulate” the Aussie economy.

Maybe my argument is difficult to accept objectively given i’ve got a “horse in this race’.  Can’t the investigation of an inrease to NewStart be viewed with this lens: who says compassion and fiscal responsibility always need to be on opposite sides.