So the specialist have rescheduled his next visit yet again, without my spouse's consent or at least tried to, this time he at least got an email we both understood to be yet another incident of this pattern of ADA & overall attempts to invalidate the basic rights of people who aren't in inpatient care, to control their own schedules in visiting Dr's. He emailed back to refuse the newest date as at this point it's a refusal of theirs to provide the service of said physician..

After last night's rains, that kept us up most of the night, neither of us really have the strength to handle a local clinic visit, so as shitty as their system is, we used their general online contact form, to message our cancelation & request of reschedule via email.

*Patient portals at neither set of Dr's offer scheduling via using said portals, so our request for emails & not portal use isn't at all hampering scheduling. The fact that they still somehow don't seem to have it register as anything but an attitude problem of ours, that we can't use voice calls to schedule & reschedule visits, rather than their not granting said reasonable accommodation of email use, is a major & continual problem.

The specialist clinic being really intollerably bad because whenever they screwup, by changing the schedule yet again & not informing us of this until we've arrived to try & checkin, they've cost us about 1.5 hours of time & 1.25 gallons of gas just to drive there, park & get from an on campus parking garage spot to their actual office, with travel on my spouse for that distance & time not being very easy lately. Yes....sometimes we've the energy to stopoff around 1/2 way back for a store trip beyond often needing to eat out to avoid seizure issues on the exhaustion, but that doesn't make the setup anymore sensible to continue. The very reason we're going there is because they're supposedly the closest place that'll treat his issues, which likely are largely responsible for how little energy he has to begin with, but for care to be possible the Dr actually has to show up for when we've scheduled an appointment with them & not have nurses trot out what amounts to my mind to a long excuse set over the reality of
"we will not treat you unless you're a pair of people who'll gladly hop to answer any & all our phone calls, continually change your schedule in whatever ways we find convenient and accept our word as we pass along second hand, the easier for us to manage & track treatment methods from the Dr, to avoid you bothering them with more visits."

#ADA #DisabilityAccessibility #MedicalCare #Communication #Anemia

The more I look at the tech & communications mess set of that regional medical center which is a part of the state university, the more I'm realizing that for all the money spent on the "partnerships" which amount I believe mostly data, printer & computer sales, it's still primarily a hospital thats pretty continually shortstaffed & set of attatched specialist clinics, really run completely by phone calls& post it notes..... as all their records are on computer systems that are down more than up, with a side of people accepting getting hurt & killed by all the mistakes caused by that records & communication system.

The total revenue of this mess was $1.7 billion in 2023 so this isn't a tiny setup either & that scale is why there really aren't "easy work arounds" but also why it isn't a lack of funds that's at all causing said problem.

*Most people there don't really know what's happening or why & those that do aren't in any position to really fix any of it.

#BigData #MedicalSystem #DisabilityAccessibility

On the one hand I keep seeing some ableds insist that every "new" custom wheelchair with a video is going to become available to every disabled person who wants to use one to improve their quality of life, nevermind that the technology been around & pretty indistinguishable in overall look in custom chairs to what said new video shows, has existed for at least 30, often over 50 years, they think this is "the one" & think it provides so much hope & inspiration to & for disabled people.... and when I point out how completely ridiculous this actually is, in the expectation that people like me, who definitely can use wheelchairs sometimes to help improve the quality of our lives, will ever actually get them, I'm told that it is me who is the problem.

On the other hand I keep seeing at least some ableds insist that cell phone hardware commonly available now is universally accessible to all disabled people, as are all other computers, even as I've seen & owned what once was very commonly available hardware which was better for my disability accessibility needs (which really the same set of medical issues that would have the chair sometimes helpful) over a decade ago..... and again this is generally pushed as an attitude problem of mine....

Ideally I'd really love both - near zero turning radii power wheelchairs custom fit & available to me for under $400 out of pocket, including the costs of my getting measured for it, so that I can actually afford to save up for & get one.....and a degoogled smartphone with a physical keyboard built at least close to military rugged standards for falls/impact resistance, as old ones were....

but if I'm going to pick one --- I'd prefer the more realistic option, which is the phone/minicomputer because even if I could afford 2 custom wheelchairs, for days we could use them on things like shopping trips together, we'd need a bigger vehicle just to make sure we could fit the chairs & ourselves without destroying said vehicle on how heavy these chairs would be.

#DisabilityAccessibility

#shitpost yes I'm perfectly capable of using touchscreen only devices if .... it isn't snowing or raining within 150 mile radius of where I am & if the temperature stays at 70-80°F at under 20% relative humidity & if I don't exercise enough or too much & if I don't stretch too much or not enough & if the pillows I sleep on don't bunch up in a bad way ....

But I find the notion of ever managing to get all these conditions consistently met to be rather ridiculous, so that's why I'm looking for ones with physical keyboards.

#DisabilityAccessibility #Tech #Enshittification