The last four posts were written in response to historical criticism and questions I have fielded as a mom of a person with a disability. Not everyone who observes our situation weighs in with criticism, but enough have done so over the years to make me reflexively defend my actions to potential naysayers.
From her well-intentioned classmates to gossipy parents to (really) intrusive relatives, I’ve fielded a host of queries about how we handle life with a disability. The large percentage of armchair analysts have no personal experience dealing with a disability, but that doesn’t stop them from having an opinion. The bureaucracy that has grown up around people with disabilities is often impossibly dense, labyrinthine and punitive. This medical/governmental complex, what I call the “Disability Business”, compounds the day-to-day difficulty of functioning with physical impairments. That combined detrimental effect is what I wanted to highlight.
The point isn’t to encourage pity, but to increase understanding. Because for every person who will tell me face to face their “simple solution” to the complicated problem we’re facing (always starting with “Well, why don’t you just…”) there are dozens of others who won’t share their opinion directly, but instead rail publicly about how disabled people have a “free ride”, how people with disabilities are faking it for the good parking, how people with disabilities are somehow gaming the system.
If you’ve read this whole series, let’s take stock. If a person without a disability fell down and cracked some ribs, she might go to the hospital, get an x-ray, have the ribs taped, get some pain meds, go home, rest, and gingerly go about her life. The ribs would be an annoying, painful, but ultimately inconsequential blip in her day-to-day function.
But for my daughter, cracking ribs meant total bed rest, a personal assistant for all position changes; she couldn’t sit up or lie down alone. She couldn’t push a wheelchair or reach her controller, so someone else had to “walk” for her. She couldn’t go to the bathroom or eat without assistance. From a fairly simple, low-level fracture, she was completely incapacitated. If this fracture had been worse, say multiple ribs fractured, or an arm or leg, she’d be down for weeks.
And unlike people without disabilities, for her, fractures like this can happen at any time. These interruptions are so commonplace that we have a routine in dealing with them. And my daughter’s disability isn’t even as involved as other peoples’; she functions at a high level.
I guess what I want from this is for people to just think. If you have the impulse to offer advice to a person with a disability, take a moment. Realize you may not know what life is like for them.
Maybe you can’t walk a mile in their shoes, but the very least you can do is not critique the way they are walking.
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