Saturday, February 25, 2017

The Destruction of Pompe, Interdicted Sclerosis

"We thought we could change the world."-- Mario Vargas Llosa, post goat mortem

During the 2016 primary season, I tried to build a case, perhaps somewhat unsuccessfully, that Trump's hostility toward Serge Kovaleski, driven by his media antagonism, if we tally the number of fake news tweets into his presidency, did the collective social conscience a favor. That the president then flipped a coin in his first address to Congress to usher in Megan Crowley as a time honored, privileged, diminutive token doesn't contravene his credibility so much as expose a divided American psyche, and I'd say the ratio is at least 1 in 50 on the conservative side. For every extraordinarily privileged persons like Megan, or fully matriculated individuals like Governor Abbott, there are then ten marginalized wheelchair residents in a public housing facility with zoophytic lives, attributable to how badly Medicaid Waiver systems are administered. Though budget allocation is a factor, the number of dollars spent on regulating the poor to death isn't the only problem. Socialized medicine is a regulatory nightmare that hasn't changed in the 35 years in which I began making my living at it, unless the change is that of even more stricture through centralization, and this represents the failure of inclusion since Helen Keller became the apostle of being in the world despite the severity of her deprivation. My life was in jeopardy from 10/17 through 3/18 only to be placed in jeopardy once back in the system by a provider's attendants being a no show, which goes to the heart of why I took myself off of waiver services in 07. At this level of poverty in the Philadelphia region, the digital economy has a subzero impact. Case managers are like Bill Murray repeating Groundhog's Day with no outlet to wake up, and it represents Erik's failure beyond his current end of life mental decline. He forced this section 202 housing contractor to "renovate" the building, putting every single resident in here through unimaginable hell for well over a year, only to have the city's housing authority strike back by prohibiting disabled tenant access to senior living facilities unless they meet the age requirement, and ADAPT's defiance against medical model authority has also cratered in IL, since they now have nursing coordinators, and if we have a class of 30 autistic students blowing bubbles in a park, this is featured in a local news segment like a Gnostic gospel for savants, taking victories in the acknowledgement of our still precious limitations. If you'd like an example of how my pessimism could be assuaged, the Amazon series Britannia, though it vibes like Masterpiece theatre on steroids, presents its maimed with a live and let live aspect. There are no phalanx of visiting nurses doing absolutely nothing, certainly not with effective treatments, simply adaptation and aid by and whom is at hand. In the life of Emperor Claudius, which coincides briefly with the harsh rabbinical life of Jesus, there were no overzealous fathers who created found wealth for 24 hour nursing care, no persistent vegetative states used for dramatic purposes to portend malignancy. You were butchered, or tortured, wounded, survived or not. This is more beneficial for bipedal primates than blood thinners allowing a 94 year old to catapult into thinking her care givers and relatives are demons boring holes in her skull. If some of you would like me to cease hating the devoid lives of so many invalids I've lived through in this bariatric driven Commonwealth, stop elevating Megan for her stoic coping, and for those of developmental birth who can, let us hope too, like the slim minority of paraplegics and amputees in the mainstream, that we can earn establishment prominence. That's real inclusion, not government contracts with religious organizations and state civil servant intake that can't tall it's asshole from its dung heap.

No comments:

Post a Comment