Some things about disability just need to be said sometimes. Blogs spaces are good places to do it. It is cathartic for the author and hopefully somewhat educational for readers. Hopefully…
I started “blogging” a few years ago on Facebook because people wanted to hear my stories about growing up in a not-so-generic small town in Central Ohio. Over time these stories began to morph into a variety of topics which inadvertently began to fill my post-retirement time with writing about “stuff.” In the midst of musings and stories, sometimes a good, old-fashioned rant surfaced. Blogging sometimes became a way to enlighten readers about my, and others, frustrations with disability experiences and topics. Here is a favorite rant topic and one I have encountered myself this past year having become a wheelchair user and nursing home resident for the better part of 2018 and 2019.
Communication. People talk about you, over you and like you’re not there when you are “disabled.” They develop an “ownership” of your private business, your relationships and your conversations. This is a frustrating thing having been an articulate, educated woman who can go the verbal distance with someone but there is something about having a handicap that takes away your physical voice at times… a fact I noticed when trying to have a conversation with someone I’ve known from working on staff at a sheltered workshop earlier in my career. For some reason having a disability equates with not having a larynx …a fact which tended to wrinkle my forehead tightly enough to give me a migraine more often than not. A migraine brought on by a pet peeve. That being: When I am out in public I occasionally run into people I know who are from the sheltered workshop program where I used to work. I say howdy and attempt to start a chat. You know, how you been? Whatcha been up to? Generic stuff. Pretty normal. A lot of times these old acquaintances are with their paid "providers" who are their staff. Staff who immediately feel protective. Staff who are not quite comfortable with your level of intimacy with the person they are charged with protecting. Suddenly in the middle of “I still work at McDonalds…” they step into the foreground from their spot a few feet back where they are pretending to look for price tags on face towels, and launch into interrogation mode.
Curiosity perhaps? Self- and job preservation? Maybe for safety because my relationship to said individual is in question? Whatever the reason, the antenna goes up and suddenly my enjoyment of catching up with an old friend turns to their staff’s discomfort as though I am about to kidnap someone. I'm saying hi, how are ya? And trying to see how a human being has been since I’ve seen them three years ago. I don’t think I look like a criminal. I'm not asking for money from their purse, or threatening harm with a Samurai sword, or making indecent proposals or luring them away from their protectors (Hey little girl, I've got candy in my car...can I sell you into white slavery?). Suddenly we find the spell of pleasantness broken by inquisitiveness born of rules and job descriptions and the lack of belief (maybe) that Mary or Sam or Betty Jo can’t possibly have old friends from the past who might run into them at Wally World. I can’t run into to Mary or Sam or Betty Jo nor can we be pleased to see each other. This would violate the developmental disability mantra of being appropriate with strangers. Don’t hug people in public. Gone is the everyday attempt to open a conversation in the way two “normal” old friends might begin because your disability makes you vulnerable…or incapable.
Soon the background staff is in the foreground firing off answers to my questions…finishing sentences... filling in blanks not answered quickly enough in response to the normal catching up things that people do when they run into each other at Wally World on a Saturday afternoon out shopping for shoes and toilet paper and fish food is gone. The normal, naturalness gone, diluted in a sea of protocol. The flow of our natural exchange is replaced with a plethora of questions not satisfied until my name is disclosed both first and last. How do you know my client here? How long ago did you work at ACME workshop? What did you do there? It seems somehow inappropriate that I have a level of emotional intimacy with Jane Doe and it, therefore, must be defined before I am safe. I appreciate protectiveness and I know some folks are over-trusting but I frequently wonder if my friendliness toward a person whom I haven't seen in a while is so unusual that it is perceived as some sort of aberration which can't exist on this physical plane. I find it sad that we live in a world of bubble wrapped environments and major unusual incident reports.
We, the “normal” people fervently preach that people with disabilities need to be treated as normal and be part of the community yet we cut them off in so many opportunities. Attempts to have a genuine conversation takes on an artificial quality somewhere outside of normal. Living a "normal" life somehow seems impossible in these circumstances. The scales that balance this equation are still in motion trying to achieve equilibrium. Until that happens I guess we just have to keep making adjustments so if I redirect a conversation back to an old friend and try to ignore you, please don't be offended. I get it but I'm too old and set in my ways to have a one-to-one conversation with three people. Food for thought.
Image credit: self