I spent seven weeks in a rehab hospital in Detroit in 1973 with my T12/L1 spinal cord injury. Before arriving at what is widely understood to be a slave labor camp, I had six weeks to recover from surgery in an acute hospital, where I did not sit up the entire time.
Feeling foreign in a wheelchair, wearing a back brace, the whole situation felt, to say the least, extremely vulnerable. After all, I had just crushed two vertebrae. Just being upright was unnatural.
They had me playing ping pong. The ball hit the floor, and rolled over against my wheel.
“Pick it up,” the recreation therapist says.
Aghast, I answer, “Are you kidding?! I just broke my back!!”
The notion of leaning over to reach the floor and curving my spine that much struck me as insane. But he reassured me I that my spine wouldn’t collapse, so I cautiously leaned over, amazed to find that I could reach the floor.
The spirit of every moment in rehab was about being as independent as possible. No one pushed me in the wheelchair (Can he use his arms? Then let him push himself!) and they made certain I could get dressed and undressed and urinate and defecate entirely on my own.
They pumped me up so intensely in the gym that I still have stretch marks on my shoulders because the skin couldn’t keep up with how fast my deltoids blew up. And for a good reason: my bulked up shoulders have allowed me to transfer into my chair from the floor, a maneuver I can still manage today, 34 years after the fact.
Well bully for me. Not at all, actually. Thank the Gods for the slave drivers of rehab, and for my being allowed the time it took to get that strong, teach me so many skills, and instill such a deep sense of preciousness for my independence.
I’m the personality type (a third child to boot) who wants to do stuff for myself. If anything, my adjustment process was about learning when to let others do things for me when it made sense, and to thank them graciously. I don’t have to open every door, push up every incline, or reach up to every high shelf.
This is a line that every one of us with a disability has to dance with. How much to do for ourselves, how long we’ll spend doing something just so we can do it without help, or how much awkwardness we’ll endure toward that end. We all struggle with when to actually ask for help or accept an offer.
I’ve heard many stories about children with disabilities reaching their teen years, and expecting to be pushed or assisted like they always were as kids. Frankly, they probably didn’t need a lot of it when they were kids. Parents of children with disabilities often wrestle with guilt for their child, and do too much. Making a kid be “independent” feels unkind. Or unfair.
But then that kid grows up and doesn’t have that core sense of independence instilled in them. “What, I have to do this myself now?! That’s so unfair!!”
The parent who says, “Do it yourself!” is actually doing their kid a favor.
At appropriate moments, and very lovingly, of course.
Whether it’s a kid born with spina bifida, or an adult with multiple sclerosis, the attitude you hold around independence has real and serious ramifications. That kid may not get through high school. That adult might not seek or keep a job. They might not be able to travel independently, or go run errands. They might not play as much of a role in their household as they otherwise might.
There is an objective level of independence that is defined entirely by your disability. Your attitude towards independence influences how close you get to living that objective potential in your daily life. It’s a value that plenty of people are plenty willing to let someone with a disability fall short of. Our culture in general is willing to accept dependency; that is its deeply ingrained belief when it comes to people with disabilities.
If you have a recent disability, you might be buying into limiting beliefs and not realize it. People don’t get the slave driving rehab stays that we used to in the 70s. Family members, in a sincere protective caution, will sometimes not encourage a recently disabled loved one to reach out for the true limits of their independence. There are lots and lots of reasons why someone might fall short of that objective boundary.
Rehab and independence are attitudes, and they don’t have to entirely rely on the current screwed up state of American healthcare coverage. If you want to get strong, if you want to learn a technique, if you want to find out if there is some trick product out there to solve a problem of independence, then don’t be stopped by an insurance adjuster. Check them out on your own.
Granted, if you’ve got the wrong wheelchair or you can’t get funded for a technology, that’s a different issue. A different fight.
You’re entitled to independence. And you’re entitled to say so. If you have people in your life who automatically do things for you without asking, then speak up! We sometimes give our independence away so easily, simply by being passive when someone goes and does something we know we can do ourselves—whether it’s pushing a chair or doing our own dishes. If you don’t want help with something, then don’t let someone say, “Here let me do that for you” without answering, “Thank you, but I’ll do that myself.”
An attitude of independence doesn’t mean attitude, though. Spare the rudeness, because people offer help from sincere generosity—or abject confusion. Push them away rudely, and you might not get the help you need when you choose it.
Remember these key points:
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