For the first time in my life I’m writing a blog post that I am dreading even as I type. As I sit here thinking about the topic on my mind I’d rather get up and do ANYTHING than finish this post. I forge on as an exercise in self discipline.
I’ve had labels, privacy, and disclosure on my mind for the past couple of weeks. It’s interesting to think that after jealously guarding my privacy about limitations that have been a part of my life since a the Big Bang, a spinal cord injury in 1985, I’ve decided to haul out the Americans with Disabilities Act to enforce my rights for the first time ever. Once again, as he has been in the past, Hank the Tank has been the catalyst for my contemplation. This time on the fine art of labeling ourselves.
It’s no secret I think labels are nonsense. Labels are definitive. Once we even say them, they can hold great meaning to our sense of identity. I’m both repulsed and fascinated by our culture’s need to categorize people with labels – whether by race, religion, sexual orientation, even physical or learning differences. I just don’t get it. We are such a complex species. These things are just one aspect of our identities.
Then again, labeling a challenge is the first step to solving it.
We are all unique individuals with specific gifts, purposes, and even limitations. Our culture is far too concerned with a “norm” that really doesn’t exist. Even though the term is rather new, I’ve embraced the concept of neurodiversity my entire life – that the infinite variation in neurocognitive functioning within our species is a biological fact and not something to be pathologized.
And the same goes with physical differences. Some people can climb a mountain on a Sunday and report to work on Monday morning without a hitch. And some of us can require 2 days of downtime to recover after 30 minutes of light gardening. This is just a fact. Why or how I require more recovery time after physical exertion than some people, or help getting out of a car after a 30 minute drive is really no one’s business.
Except when it is.
I recently moved back into the heart of Austin after a year rest in the country contemplating an empty nest and no more excuses for not writing my book and launching my teaching and healing business full time. As I always have since becoming a non-homeowner in 2009, I listed my dog on my lease application. The landlord and I felt like we were a great match for each other, so The Beast and I happily moved into a no-maintenance, stunningly remodeled ergonomic kitchen-boasting condo right on The Greenbelt. Hip Hop Peachick even decided to join us.
Woot! Happy city dwellers were we. So you could have knocked me over with a feather when a well-meaning neighbor walked up to pet Hank on our very first morning walk and lament how she loved big dogs but “you do know there is a 25 pound limit on dogs here?” By the end of our first day 2 other people had confirmed the same thing.
Thus began a weeks long dance with my landlord, the condo HOA and several lawyers. Yes, I have a legal contract with Hank’s name and description on it. And yes, the HOA has some outdated previously unenforced legal documents limiting dog size, too. (Would someone PLEASE tell me how legally limiting the size of who you love is even a thing??)
Very long story short is that during our warriors-take-your-positions dance one of the lawyers involved heard my attorney’s protests that this dog was an integral part of my life and was a great source of both physical assistance and emotional comfort and spoke up, “Oh, so he’s a service dog?”
Well, yes, I considered him one but being the label hater that I am never saw fit to research ADA law or regulations covering assistance animals. I had always assumed that there would be complicated registration procedures and all kinds of invasions into my medical privacy. Besides, why would I want to label myself “DISABLED?”
And there it was.
Sure, I had handicapped plates for a time two decades ago. Sure, beginning in 1985, it sometimes feels like I’ve spent a lifetime in and out of medical care for spasticity issues, physical therapy, pain injections, and behavioral therapy for PTSD. And for the last 10 years or so I’ve considered myself in “remission” for most of my post-spinal cord injury physical effects. Except for a handful of omnipresent daily reminders, that is. So why do I resist the “disabled” label so fervently? It’s the belief outlined above about the power labels have over us.
I’ve never considered taking Hank out in public where companion dogs aren’t allowed because I detest calling attention to myself. I’d also rather deal with pain, stumbling, and needing to push on a table to get up from being seated in a restaurant over screaming “disabled person” with the presence of a huge black dog where there aren’t other dogs in sight. Yet in the privacy of my home, I’ve trained him to be a great comfort with specific tasks thanks to the help of a friend who trained Navy service dogs. I also had him evaluated by a neighborhood facility that worked with fire department dogs, a place that soon became his home away from home when I needed a break or to travel.
Would I really give up a big, strong beast to help me down the stairs in the morning, or pull the trash can to the curb, or stand resolutely while I pull myself up off the floor, or survey the perimeter when noises disturb my sleep? Hank does all these things and more. Just his presence in my life is a physical and emotional comfort. Forcing myself to get out and walk him twice a day helps reinforce my mobility when I’d rather stay in and meditate, write, or read. And most of all, when I occasionally lapse into complacency or lack of self-discipline he’s the first to mirror this back to me and demand my full presence.
So all these things considered was I going to spend months in a legal battle using up precious time, energy, and money? Or would dusting off a long-buried label be the right way to go?
This is one of those rare times in my life when I’m not ashamed to use the “disabled” label. Until we stop comparing ourselves and our children to each other – and what a glorious time this will be – disclosing certain facts about myself is preferable to a long protracted fight, which would have a horrible effect on my health and peace of mind.
Thanks to this experience, I’ve now come to consider this kind of disclosure or labeling kind of like insurance. We’d all – especially “you are what you think” types – prefer not to need insurance; yet when you have a car accident or a fire or a sudden illness it’s there. We all know how valuable this kind of planning can be. Rounding up letters from healthcare providers and boning up on ADA law (way less complicated and more protective of my privacy than I thought) is just smart.
Be prepared. And then live your life.
Thanks to Hank and nosy neighbors for reminding me how powerful it is to journal…even to tell our stories to others. This post wasn’t so hard after all.
iPhone Photo :: Hank the Tank ready for an outing in the country. He knows when the harness goes on it’s time to pay close attention and “work.”