At the Tavern, Mrs. George S. Kaufman urges a noted theatrical figure to accept the movie offers being tendered him. “Listen, and take my advice,” she urges. “Don’t overlook the money part of it. I’ve been poor and I’ve been rich. Rich is better!”
If I was to hear this exchange first hand, I am not sure how it might hit me. Could I be disgusted by the shallowness of Mrs. Kaufman? Would I feel sorry for her? Possibly I might dig into it a bit and see if there was anything of value to me? Who can say. This took place in 1937, perhaps things were different then. Still, perhaps, I can appreciate a nugget of truth here.
Rich, in terms of money, though, is kind of a slippery thing to get your hands on. While a hundred dollar bill blowing in the breeze might make a hungry, unhoused person feel like a king, it might take other folks a bit more to achieve the status of rich. I suppose that a person is “rich” when they think that they have arrived wherever it is that they need to be.
I am not rich. Still, I feel good about where I am. That is not because of the square footage of my home or the size of my brokerage or bank accounts. I feel ok with things because I have managed to accumulate options: where I might buy a new car before I need it, this purchase would be my choice. In my experience as a disabled person, I believe a solid set of options is invaluable. Why? Because I can exchange options for adaptations. Without being overly dramatic, the best I can tell, as with theories of evolution, adaptions are key to survival.
Examples of adaptations I have managed over the years:
- I bought a van with a wheel chair ramp and hand controls = freedom to go where I want, when I want
- I bought a decrepit ranch-type house, gutted it, and purpose-built it for my needs, with a roll-in shower, lowered cabinets and 36 inch doors throughout = gone are the days of hobbling down the stairs wondering if that day was the day that I cracked my skull
- I did not want to put up an aluminum wheelchair ramp; my pride and vanity would not abide. Instead I hired a mason to build a winding stone, inclined path from the driveway to the door = form and function
- When my kids finally relinquished the downstairs, I got an elevator to double my living space = upgrade from what felt like an apartment, to an actual home
These things represent huge privilege. I get this, and am enormously grateful that these gateways in my life were open. Unfortunately, most every thing costs money. Since I am not independently wealthy, these items were acquired over time, which kind of works out. Since my disease is progressive, I was not in need of all of them at once. By now, though, I use each of these, and many others, every day. Are there other facilitators that I could use if I had unlimited resources? Absolutely. All anyone can do, is the best that they can. Not all adaptations are pricey- think about what you need and consider ways around your obstacles. Over the years, I have spent plenty of time thinking about homemade contraptions that might be helpful, inexpensive or even free to improve my quality of life. Some work, most fail. That said I like to point to one of my most useful tools, a device that required nothing more than a 6 foot length of rope.
I am fortunate that I have been able to acquire most of what I need to live my best life possible. But that is just me. I feel so extremely lucky that I am where I am and have access to what I have.
But that is not my point, I got lost in the weeds. The gist is that disability is not so choosy. It can afflict anyone at any time. And this is what concerns me most. I constantly fret about my peer group who are unable to get the help that they need. Why was I fortunate enough to have a slowly progressing disease and the resources to obtain the tools required?
This is, as I see it, where life starts to get unfair as hell. Why should I have it any better than the poor homeless soul who cannot work and barely eat due to their disability? What about the young person with fabulous dreams and ambition who became a paraplegic with an inadequate social safety net? I am certain that there are more extreme cases, and plenty of people somewhere in between.
In my experience, health insurance (if you have it), is of some use, but not for the big ticket items. The Americans with Disability Act is a start, but in my experience, while helpful, if it was all I had, it would not be so useful. I have heard stories of the old days, when some handicapped people, were kept out of the public eye, I expect to avoid bringing shame to the family. It is rough out there.
I do not know the answer to any of this. I doubt that any entity can afford to remedy the problem. I think that Loren Eiseley, author of the “Starfish Story” was on the right track. And that one cuts two ways: love yourself, even if one little thing that you can do might improve your life, focus on it, do whatever it takes to achieve it; if you are in a position to help another in need, ask yourself if you are able to assist- even the smallest of gestures can make a difference.
I expect that if we all could live with these ideas in mind, Mrs. Kaufman may have been on the right track.
Walking the Rails 