Advocacy and Inadequacy – Part 2

This is Part 2 in what will likely be a 3 part series.  Here’s Part 1, if you haven’t read it yet.

So I’ve started getting involved in the disabled world once again (mostly online, for reasons I’ll try to outline here).  And unlike the sports world, where I actually had a little talent.  I feel completely inadequate now.

On a wheelchair basketball team, many of the players walk into the gym, pushing their chair, before doing a striptease to remove their fake legs or their braces so that they can get in their chair to play.  Walk into a gym on a tournament day and you’re liable to see an entire row of fake legs, pants and all, leaning against the bleachers… it can be quite disconcerting.  In this environment, no one gives a second glance to a girl with neuropathy, who can walk sometimes but uses her chair for long distances or bad days, and has to tape her hands to get them to put the ball where she means it to go.

Even a fairly ‘hidden’ disability becomes obvious to those who see it day in/day out.  My fellow ball players knew of my limitations, they encountered them during games, they saw me struggling to walk or use my hands when we went out after games.  They knew I was disabled, even though I had a rather bizarre kind of disability.

Anyone who ends up spending much time with me in more than one environment will eventually come to understand my limitations in a similar way, but this does not apply to most of the people in my life right now.

I live alone.  Very few people see me on my bad days, because my bad days generally prevent me from leaving the house.  Add to that, that over the years, despite the progressive nature of my disability, I have slowly learned how to prevent many of the the exacerbations that lead to bad days and loss of function.  I’ve also found a decent medication (allergic reaction notwithstanding) combination that has left me in a generally functional state most of the time.  Most of the time I can walk, and often can manage to look fairly normal doing so, even without my braces.

This has left me in a rather bizarre situation.  Here’s what I mean by that…

There are some people in my life who have never seen me using a wheelchair. Several of the people in my small-town post office, for instance, have only seen me walk in.  Sometimes with a cane, sometimes without.  It’s only a few feet to the counter and back to my car, and there is no situation in which it makes sense to haul my chair out of the car, put it together, fight to open both doors, twice, and load the chair back in the car again, just to check my PO box or mail something.  If I can’t walk, I can wait til tomorrow, or I can schedule a mail pickup.  People who work the convenience stores nearby have the same experience of me, as do those in most of the restaurants.

There are other people in my life who have never seen me out of the wheelchair. I use the chair for long distances, or any time I’m unsure of how much walking will be required.  I do not walk into a grocery store.  I rarely walk into a church (it’s ridiculous to try to concentrate on praising God when you’re in massive amounts of pain or worried you won’t be able to get back to your car afterwards).  Consequently, many of the people at my church, or a church I have only been to a few times, assume I’m paraplegic until I hop out of my chair to do something and freak them out.  I’m sure many of the people in the grocery stores, Walmart, the Y, doctor’s offices, movie theaters, and various other places assume the same.

This can be extremely confusing to people, for reasons that are perfectly understandable. Those who see me walking most of the time think I’ve sustained some sort of sudden injury the first time they see me in a chair.  Those who see me in the chair most of the time think there’s been a miracle the first time they see me walk.  (And on some occasions, people don’t even recognize me at all.)  I do not have the time or the energy to stop and explain my entire life to all of these people, nor would I want to.  And my attitude is often less than conducive to helping end this confusion.

Not that I’m excusing a bad attitude, but consider it from my perspective…  If I’m using a wheelchair in a circumstance where I would normally choose to walk, that means I’m already having a very bad day, pain levels are high, and something has compelled me to come out into the world despite this.  I’m not going to be in a good mood.  Then I run into Joe Schmo, a nice enough guy (who I think I should probably know but I’m not sure where from because I cannot remember most faces), who, upon seeing me in a wheelchair for the first time totally freaks out, and says “oh my gosh, what happened to you!?!”.  Now, on a good day, I would likely say “oh, nothing, I use a chair on bad days is all” or something similar, while smiling at him to try to ease his panic.  On a bad day I cannot muster this type of response.  As well intentioned as I know a person is, “the what the hey happened to you?!” reaction always rubs me the wrong way.  I rarely have the energy to engage in small talk on these days in the first place, and I know that if I respond, I’m likely to bite this poor guy’s head off for no reason.  I’m likely trying my hardest already to get enough energy to get done what I need to do and get home, hoping beyond hope that I don’t have to talk to anyone at all.

The opposite situation can be just as frustrating, but for different reasons.  My disability affects both my arms and my legs, in varying degrees, in ways that vary from day to day.  So sometimes when I choose to walk, it’s not because my legs are doing better, but because my arms are doing worse.  Sometimes I can’t physically lift my chair out of my car, sometimes I know I won’t be able to push the chair, and sometimes I have to even leave my cane in the car, because as unsteady as my legs are that day, I know I won’t be able to hold onto the cane.

So I’m walking along, however precariously it feels to me, however much pain it’s causing, and I run into someone I know.  More often than not, running into someone I know somewhere, while I’m on my feet, is horrific on it’s own.  People love to stop and talk when they meet someone unexpectedly (even I do, on good days, usually when I’m in my chair! lol).  Stopping to talk while I’m on my feet hurts.  If there’s not a place to sit down, or something to lean on it may cause me major problems.  I may risk not being able to make it back to my car, I will likely have to deal with much less ability a day or two later.

In this context, when someone says to me, “oh, you’re walking, how wonderful!”  My first reaction is to want to glare at them and groan.  When they couple that with “God really must be answering prayers” it tends to make me mad.  Not because God doesn’t answer prayers, but because I’m standing there in massive pain because my arms are worse, this is not a case of answered prayers, and their ignorance is infuriating.  But they mean well, and I understand that.  From an outside perspective, someone who doesn’t know the details of my condition and doesn’t bother to look for the pain behind my eyes will understandably come to such a conclusion.  If I tell them that no, this isn’t God answering prayers, this is me too sore to even use my mobility devices but desperate enough to venture into public anyway, that accomplishes little but taking the wind out of their sails while making me look bitter.  There’s little I can say at this point that won’t dishonestly perpetuate their ignorance, depress them or offend them with my ‘negativity’, or just make things harder for me.

The third alternative is just as frustrating.  Say I *am* having a good day. I’m walking somewhere I usually take the chair, someone sees me, and says, “Tammy, you’re walking!  That’s so great!  Praise God, he must be healing you!”.  Now, they’re happy, they’re praising God, I *am* having a good day, part of me wants to just praise God along with them, but this is problematic, and here’s why:  the next time they see me I will probably be back in my chair.  If I praise God along with them, and don’t stop to correct their view of my disability, likely one of two things will happen the next time they see me in the chair: 1) They will be disheartened.  They thought they witnessed a miracle the other day, and here I am still disabled.  In worst-case scenarios this may actually shake their faith.  I want no part of that.  2) If they buy into the word-of-faith nonsense, they may immediately assume that I am in the chair again because I lack faith.  I do not like confrontation and I do *not* want to have that conversation.

I am, therefore, compelled to make sure that no one walks away from an encounter like this believing that they’ve witnessed a move of God because I happen to be up and walking that day. I may joke about it, but I have to try to make sure there’s no confusion.  And I’ll admit I’m a little bitter about constantly having to have this conversation.  I try my best to make sure that everyone I meet, while in the chair, knows that I can actually walk.  That way I can try to avoid this conversation altogether.  But I inevitably run into people who remember me when we may not have even had a conversation before.  In these cases this often happens, and I’m left once again having to burst someone’s bubble and tell them that no, they’re not witnessing any kind of miracle.  People do not like this conversation any more than I do.  There’s no happy, positive, light-hearted way I’ve found to say sorry man, no miracle here, I’m still disabled! Even something like “God may heal me one of these days but it hasn’t happened yet, I am having a great day today, though!” comes across to a lot of people as naysaying.  How dare I not see the miracle in it.  If only I’d believe that my good day was a healing maybe it would stick! I cannot possibly convey to you how frustrating it is to have to encounter these kinds of reactions over and over and over again.

Usually, after a conversation like this, my good day is ruined.  I just had to stand there for however long, usually without a way to sit down or something proper to lean on, so my legs are tiring and possibly shot for the day now, and my mood has darkened besides.

So if you ever see me out in public and wonder why I go through stores with my head down, trying my hardest to avoid any eye contact with anyone, sometimes with headphones in so I won’t have to notice that person across the way that’s trying to get my attention… these conversations are why.  Some days, I just cannot deal with the prospect of having to have any of them.

But a person with this type of attitude out in public hardly seems a good fit for any kind of advocacy work, right?

And this is where I’ll break for Part 3, where I’ll hopefully finally get to the actual post I was trying to make in the first place :P


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