This is part 2 of an extended discourse on the subject of accessibility. You can read part 1 here.
Recap: I had triple by-pass surgery and shortly thereafter had to travel while restricted physically. The experience opened my eyes like never before on how poorly people with disabilities are served in this country, both by commercial concerns and by its government.
Part 2
As mentioned previouslsy, I was restricted from lifting anything over five pounds, not supposed to lift both hands above shoulder height at the same time and was on medication that regulated my heart rate and blood pressure, meaning that my body did not respond well during instances of physical exertion. I usually had to stop to let my body catch up aftere simply standingn up. (That’s largely diminished, but walking a mile still has me slowing down intermittently.)
I am not one to listen to physician’s instructions if something that needs doing violates those instructions, especially when asking for help, or, god forbid paying for help, is the alternative. (Screw those doctors! What do they know?!)
Except this time, I kinda had to. I didn’t have the breath, or the energy, or was reminded by chest pains (wired-together-sternum chest pains) that I was violating instructions.
It did help that when I was in the ICU I was under almost constant supervision (actually, they pampered me pretty well and were very gentle when forcing me to do things I didn’t want to do, like walking farther than from the bed to the door). So by the time I was released I’d talked myself into pretty much trying to follow all of their instructios – taking my meds, getting my exercise, restricting myself to their restrictions.
Which meant that I was almost completely invalided. Sure I was ambulatory, but that was about it and, on top of everything else, I had just sold my house and was moving to Florida.
Apparently, I do not have a single household item that weighs less than 5 pounds.
And, of course, everything that needed to be packed was already packed…and in the basement.
A good friend came and stayed with me for almost a week; another good friend (and family) were on call if I needed assistance and my neighbor – one of the good guys – also offered to make himself available and he did.
But here’s the thing: I was extremely lucky to have so many, and such a variety, of people who were able to give of their time and make the essential sacrifices (one friend used up vacation time). I live(d) out in the hinterlands.
Had I not had those friends (or family) to lean on, I’d have had to hire nursing help, which, as we all know, is rarely fully covered by any insurance plan. (I got through the costs of the move largely because I was able to defer payment until after the house sale and would not have had the dollars for such services without being able to do so.)
So that’s the first hurdle: I basically needed some kind of assistance 24 hours a day, could not afford professional help and was inconveniently located.
With assistance of the above and beyond variety, I was able to finish getting the house closed up, the moving trailer (U-Pak) loaded up and my car packed for the trip south (to Florida). I did not have time to write my customary “Welcome to your new home” missive that recommended and promoted various businesses, filled them in on local this and that and inform them of all the things that needed fixing that their home inspector missed (lol, but seriously. If you’re going to pay for home inspection, get a good home inspector who works the area and has been in business long enough to have “seen it all”).
Which brings me to the first hurdle I encountered. Asking for and receiving assistance takes time. Time you may not have ever previously had to factor into your life. A simple example ought to suffice: prior to the surgery, if I needed to go food shopping, I made a list, got in the car and drove to the supermarket, gathered my supplies, loaded them into the car and drove home.
Now, I had to schedule the trip, which meant preparing for it longer in advance than “Wow, out of ketchup, may as well go to the store now and pick up those other things too”. Sometimes days in advance of the actual trip (well, I still have some acceptable foods in the freezer, at least I’ll not go hungry).
Why? Because where I live(d), there’s no Uber or Lyft, no Yellow Cab, no public transportation and if people are giving you their time, it’s simply not right to call them up and insist that they drop everything in their lives RIGHT NOW to drive you to the store.
I’m not aware of any formal “help me get my groceries” services avaiable beyond a medical services aide, so you trade time for availability.
All of which impacts the scheduling of everything else scheduled, which means a lot more advanced planning needs to go into your plans. People who need to arrange for assistance regularly certainly already know this, but I am sure that they continue to find it as annoying and energy-robbing as I did this first time around. One thing changes (like the friend unable to arrive when originally scheduled) and your whole day – probably even your whole week – needs to be reevaluated and rescheduled.
Even if I had those transportation options mentioned earlier available to me, there’s still a vast gulf of inconvenience between picking up the car keys and going and having to arrange something. Every trip. (God forbid you should forget to buy something while at the store….)
(Even with those transportation options available, I’d need to pay or coerce the driver into putting the groceries into the car and out of the car. You try getting the groceries from your car into your domicile while not carrying more than 5 lbs at a time.)
Clearly there is a need for free/inexpensive services across the nation and particularly in rural areas, for things like “help me get my groceries, because flying cars and universal service robots are still not a thing”.
I can only begin to imagine how much more difficult things must be for someone who is even more disabled than I was. Which brings up –
Traveling while disabled.
Which will appear in Part 3, coming soon.
