Today is one of those glorious, crystalline late winter days, cold with bright sun, sparkling snow, and long deep shadows that change direction with the sun throughout the day.
As it is winter, I am reading a good bit. I recently read a long essay about FDR (President Roosevelt), Polio, and the cultural demand that survivors pas,( that we act as if we were not disabled). The essay discussed the cost of pretending to be able-bodied, noting there are emotional, physical, and financial burdens that accompany passing, and mused about how our lives might be different, and perhaps better, if we had been free to be our disabled selves.
The emotional burdens include the pain of living a lie, of hiding crucial personal experiences and a sense of self. The physical costs are countless, and include undue wear on one’s body and a near 100% likelihood of developing Post Polio Syndrome (PPS). The financial costs are legion; it is expensive to be disabled and more so to pass.
All of this was brought into sharp focus this morning when our local chairlift repair person came by to fix my lift. It was running fine, easily carrying me up and down the staircase, until late Friday afternoon when it simply stopped and shut down. Sadly, what promised to be an easy fix is now an expensive, time-consuming repair.
It will be at least a few days before the beast is up and running again. In the meanwhile I must either get myself up the stairs to our home office and studio, or not. I went up a couple of times over the weekend which triggered the seemingly inevitable overwhelming fatigue. On a beautiful day such as this the studio beckons loudly, a sort of sirens’ call, and it is all I can do to resist. Friday’s hoped-for fix seems far away indeed.
This stairlift allows me access to the second floor while a second one provides passage to the basement. Together they give me the run of the house and allow me a sort of passing. Guests quickly figure out that I am much more interesting and companionable when the stairlifts are running, then give me a sort of “pass” into normalcy. Kids more or less immediately determine that stairlifts can provide entertainment, yielding a considerable elevation in their respect for me.
All this is well and good, and I appreciate access into the world of the “sort of normal”, but it comes at a considerable price. Stairlifts, disability scooters, and scooter hoists for the car all require upkeep and repair, and scooter lifts must be purchased directly. Add in a van large enough to accompany a scooter and lift and one finds oneself spending “real money”.
While there are state programs that may assist some persons with some of this expense, an inability to pay for the technologies of passing may, and frequently does, create enormous barriers to the social world, higher education, and employment. Very few of us gimps have FDR’s resources in the form of family wealth or position, yet there is a bewildering social expectation that we all should rise above our disabilities and do great things, even in the face of seemingly endless socially engineered obstacles.
This expectation flies in the face of everyday experience. Just getting through a heavy door when on crutches, let alone on a scooter or in a wheel chair, can be an immense challenge. More than once I have found myself stuck between a door and its frame, a situation that could have been avoided had the offending door been automatic. (By the way, it is the rare person indeed who can hold a door in such a way that one does not feel even more disabled.)
As challenging as living with a significant disability may be, crip life is increasingly lived at the intersection of a wide range of disabling agendas propagated under the political rubric of “financial restraint” or”austerity”. Attacks on the ADA (Americans with Disabilities Act) and its equivalents elsewhere are intense and sustained, as are rollbacks in ecosystem protections and the dismantling of accessibility safeguards for Natives, people of color, and queer folk. Even workplace safety rules are under attack.
The thing is, all of these trends can be understood as intersecting at a point where the social commons is being dismembered in service of aiding a relative few persons to enhance wealth. For many of us, these are also intersections of multiple identities. (They are also places where there is pressure to pass if one is at all able!) The result is that health and inclusion become ever more expensive and difficult for the rest of us, disabled or not. Somehow, in all the demagoguery what gets lost is that at the intersections of our lives we are more similar than we are different, and our collective lives are richer when everyone is invited, and allowed, into the conversation.
6 thoughts on “Passing Is Expensive!”
It sounds frustrating to not have access to your home as you are accustomed and scary to know access to public spaces is questionable. Thank you for calling attention to it. We hope your lift gets repaired and that you have energy to navigate this period.
Yes, frustrating indeed! Hopefully it will be repaired tomorrow…..
You write about this so clearly and thoughtfully, I am so touched, and angry. There is no excuse for a culture of neglect.
Thank you. Yes, there is no room, or need, for such a culture. There is a paradox in all of this, of course. I can afford to address my mobility needs, a position of some privilege that also allows me to protest. Both of these privileges are always provisional, which, again of course, is part of the culture of neglect and precarious living.
Hi Michael…so much to comment on here! First, I hope that you have your lift repaired and you have free reign once again. You bring up so much that deserves to be addressed!
You really made me think about: ‘it is the rare person indeed who can hold a door in such a way that one does not feel even more disabled.’ My Mom was so proud and tried her best to never ‘look’ disabled. I tried my best to never ‘see’ it.
Your ending says it all. And I sincerely hope I live to see the day that every voice is heard and every soul is recognized as a part of the whole!
Lorrie, The problem as see it is that disablement is a function of the built and social environments. It would not take much for most of what disables us to go away. That said, the forces behind passing are intense and difficult to resist…..