In the world of the disabled, just like in the world of the non-disabled, you have the rich folks and you have the poor folks.
While not having a Mercedes or a 10,000 sq. ft house can be annoying, and not being able to travel whenever you want can make for a rather boring life, the wealth disparity in the disability world can be truly unjust. The law suit gimps are the Golden Children of the disability world, and the rest of us must watch from the sidelines.
Whether you’re talking about long-term physical therapy or expensive gadgets that deliver much-needed critical independence, if you have a disability, your basic quality of life can hinge on whether you’re a rich gimp or a poor gimp. As happy as I am for the rich gimps of the world with no financial worries, and bank accounts that allow them to concentrate on their health or mobility issues and nothing more, because hey that's great; everyone deserves it. I’m also tired of watching my fellow disabled friends suffer.
Not having enough funds can mean all the difference to someone with a disability. You struggle to get hired, and when you finally do, you have to save for eons to get the things you want. Use a power chair and planning on flying and renting a car? That’ll cost at least $120 day if you plan on renting an accessible van when. Can’t sit up on your own without an automatic bed? You can buy such a bed for hundreds to thousands of dollars, or a cheaper alternative, you can buy the Mattress Genie for $100. Either way, you’re having to pay to sit up. Who pays for this stuff except us?
And if you have a significant other and want a Full or Queen bed for more space, that too will cost you, as those beds run twice as much as Singles. Even wanting to pee cleanly on your own, and not reusing old catheters, can make you choose between your current health and doing something financially sound, like saving for retirement. Being disabled is not cheap. And the crazy high cost of every new product that comes out that's supposed to transform our life makes them seem so unreachable, I'll even sometimes pretend they don't exist.
Sure, the products available to us are better and more exciting than ever - from walking exoskeletons to long-term locomotion training to 4x drive wheelchairs that let you get out in the woods as if you could walk - but you have to be rich to access of anything of them. So they’re amazing, but what good are they if we can't afford it? Its like saying the Hydrogen car can save the gas crisis, but who can afford the $500,000 price tag?
No insurance company pays for life-long physical therapy. Most of us never see a lick of therapy again after the 2 years post mark, but despite this, we all seem to soldier-on and make the best of it, even with meager pocketbooks. Try getting creative, and start teaching family and caregivers basic PT moves they can help you with. I've even found looking online for used versions of expensive disability equipment, from standing frames and EZ Locks for the van, to metal portable ramps and seat cushions, is a huge boon to finding great products, at reasonable prices we can all afford.
You may not be a lawsuit baby. I'm not. But don’t let your disability feel too weighing. I try to fight every day, to make the best out of my situation, and learning how not to loathe the “haves” is essential.
Yes, I'm one of the "haves." Not a lawsuit baby, but a disability lifer, C5 incomplete at birth, privileged to have had parents who didn't coddle or over-protect me, who had high expectations, and a lot of adults who put the principle of my education in 1967 ahead of their own convenience or short-term interests. But from there I got to "have" with a helluva lot of hard work and commitment to not squander what I was given. Life-long physical therapy? Are you ****ing kidding me? What a waste of my life and time THAT would have been! I went to college, lived alone, married, had three now-grown kids and various careers. I "have" great DME and health insurance because I earned the professional competence to make a contribution. We all need to not "loathe" each other, instead we need to know it takes all parts of the class spectrum to change attitudes. Activism is about a lot MORE than entitlements.