Living With Disability

Disability (n): 1. a condition (such as an illness or an injury) that damages or limits a person’s physical or mental abilities; 2. the condition of being unable to do things in the normal way : the condition of being disabled.

-Merriam Webster, 2016

It’s about time that we as a society re-evaluate how we think about disability. No able-bodied person expects to be judged on the same level as an Olympic athlete. Or to constantly prove just how able-bodied they are to the world around them. So why in the world should we thrust those same expectation in reverse upon the disabled?

And yet for those living with disability (invisible and otherwise), the social scrutiny is very real and almost unparalleled. “If you’re so disabled, why are you tagging along on your friends’ holiday?” or “If you’re so disabled, why are you at the supermarket? I thought you couldn’t move the other day.”

This happens because people generally think that their eyesight is the only qualification necessary to determine signs of able-bodiedness. Unfortunately, people don’t seem to have caught on to what magicians discovered a couple thousand years ago and that is that the human mind is surprisingly easy to trick for all it’s reasoning capabilities. That and a disability is not just an injury that results in complete inability to walk, it includes illness. There are also a number of apparatuses that can be hidden by clothes alone (i.e.: waist supporters). Relying heavily on visuals alone renders an incomplete portraiture of the disabled community.

And I’ve had to learn this the hard way. I’ve lived on three sides of the issue: as a fully functional individual who lived a good 24 years without disability, as a wheelchair-walker-cane wielding invalid, and as the kind of person who can pass as looking functional… until the nerves in my spine start acting up again.

When I was fully functional, it did not personally behoove me to think about the struggles of the disabled in any great depth. As in, until I was personally affected, I wasn’t particularly keen on counting the number of handicap spaces at the local grocery or if the hand rails were up to code. During the time I had to use the wheelchair and eventually a walker/cane to get around, most people could lump an apparatus to a body and not ask twice about the wherefores of my activities. There were no angry “Did you just see her push that automatic door button? Lazy-ass millennial!” following me around. More often than not they were religiously and awkwardly inclined to offer unhelpful advice about my condition. Also known as: If I hear another “God bless you, child, the Lord has plans for you” speech in my life I will scream. And finally, as someone who schleps about with back/nerve pain (plus a torn plantar fascia muscle), but who doesn’t “look” disabled, it still amazes me how people  who don’t know anything about my life and hold zero doctoral or medical degrees can still say things like, “You’re not actually hurt. Go see a therapist.” Seriously.

It seems as if every week that passes there’s some new story on the internet about some busy body writing out a letter shaming a seemingly non-disabled person for parking in a handicap spot. While I’m sure there are numerous politic or scientifically appropriate words available to describe the psychology behind the people who do this kind of thing, my personal view is that it’s rather telling of individuals lacking in critical thinking skills.

And if that sounds harsh, keep in mind that until you’ve had to live with an invisible disability (or ANY disability at all), you don’t know how awful or how good people can be… unless you’ve witnessed someone receiving this kind of treatment first hand. It’s that strange dichotomy you may have heard of before and it’s called “damned if I do and damned if I don’t.”

So, we do try (because we’ll be damned anyways). Trying leads to finding new ways to accomplish old tasks. Life doesn’t get easier, we just get better at it. As if that weren’t enough, we get to find out first hand who our real friends are, who was only there for the good times, and who wants to put us down simply for not fitting into a narrow box of stereotypes about the disabled. Living life to the fullest takes on a new urgency and meaning, especially in terms of trying to find joy and distraction from the pain/challenges. Simple day to day things for a disabled person can range anywhere from mildly daunting to feeling like an event straight out of the able-bodied Olympics. Gravity, we learn, is not just a force of physics but also a heartless bitch (to paraphrase one Sheldon Cooper).

Oh, and that humanity comes in two flavors: awesome forces of good and awesome forces of awful.

The simple fact of the matter is: If you don’t know whether that person is actually disabled or not, don’t assume. It’s one thing if you hear them boasting about how they use their grandmother’s car to defraud the public, it’s something completely different if you have an unsubstantiated opinion.

You don’t know what medication this person has had to swallow just to get out of bed. You don’t know the sacrifices they’ve made to get to the point where they can finally venture out from solely living between the doctor’s office and their own four walls. You don’t know how much energy it takes to smile even though the last thing they want to do is pretend to be happy. But we do it for our friends and family, more importantly we do it for ourselves because you gotta fake it till you make it.

When you tell someone that they can’t possibly in too much pain because they’re doing something painful but that makes them happy, what you’re essentially saying is that people living with disability have no right to find a reason to live. That they must shut themselves away in a world of depression, that it’s better for them not to try, and that their only worth to society is as a stereotypical confirmation of everything you think is true about disability.

I can’t imagine what kind of misery these people are living that they feel they must leave notes on stranger’s cars or to be enraged by the fact that someone doesn’t want to be alone and trapped in a house for three days when instead they could spend it with friends one last time.

In any case, it’s not our job to prove just how awful a disability is by shutting ourselves in. We shouldn’t be shamed into constantly looking as ill as we feel or to become depressed to prove that we are in fact struggling with everyday life. And it’s time we shed light on this, because even though the able-bodied may outnumber the disabled, it’s not a guarantee that the able-bodied will remain so for the rest of their lives.

Le Updates Part 01: Murphy’s Law

Anything that can go wrong, will go wrong. -Murphy’s Law

Two months later, after packing up my life and moving back home to good old Chino, and here is what I’ve got to show for it:

The Good:
-Another year of life (semi-)successfully completed. Check. Quarter-life crisis. Check. YAY LIFE! Many thanks and lots of love to all the friends and family who were able to make it for cake and milk.
– I’m working again, this time as a tutor; the hours are perfect for my current physical capabilities and severely cut back from when I was on JET, which means I have time to continue my physical rehabilitation. No more inflammation or scar tissue and the nerve pain has finally become manageable (without needing to rely on pain killers).

The So-So:
-Mastering the Art of Hobbling because of a new injury.
-8 hour training sessions for work killed all my energy and free time but now that I’m only rolling in to the office when the kids are there to be tutored, the time is ripe to redirect to the hobbies that keep me sane. Mostly writing (when the ideas flow).
-Needing to drink a ton of coffee and vitamins to get energized for the day ahead.
-Feeling knocked out by mid-day (an upgrade from feeling knocked out by mid-morning but still).
-Hot as hell in this town.

The Bad:
-High school band mate died recently. Not even while on the job as a fire fighter but simply doing what he loved: riding his motorcycle. It’s an understatement to say that his death was a shock to our small community. When someone so full of life dies before hitting 30,  nothing makes sense or feels real anymore. And all of these memories come rushing back: competitions, training for competitions, that weird nickname the horn section gave him that has nothing to do with his real name but it stuck anyway until we all forgot his real name in a conversation once, schlepping from class to class, travelling… and he’s no longer here to share new memories anymore. He will be missed by all of us.

-Less painful than the loss of a friend and former band mate but more physically debilitating: ripped plantar fascia from toe to heel. And today is the first day I’ve been able to plant my left sole firmly to the ground, apply moderate weight, and not feel it tearing up inside. This happened because I am an idiot. My physical therapist had told me I wasn’t ready to travel and I went to Japan anyway to tie up my affairs. I guess it serves me right but at the same time it wasn’t really an option. I didn’t feel comfortable having my work place ship things to me and they weren’t comfortable letting my friends have a run at the place, plus there was a ton of paperwork. The cane did nothing to alleviate all the walking, packing, and last-minute adventuring. Which meant further injury. Which meant everything got pushed back. Until, well, now.

Cheers.