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Advocacy and Inadequacy – Part 3

This is part 3 in of a series that I’ll hopefully be able to finish today (yep, that did not happen, started it a long time ago and just couldn’t manage… sorry for the delay.)   The first two posts were basically just backstory for this one.  In Part 1 I explained some of my history growing up disabled, and the encounters I had had with disabled communities back then.  In Part 2 I explained my current predicament — how annoying my disability,  and the conversations that it evokes, can be out in public on a daily basis — and how that situation makes me a rather bad fit for vis-a-vis advocacy work.

The community that I am in now is, honestly, in dire need of more advocacy work, but I just do not have the mental energy or the strength for that right now.  Many here think I’m robbing them blind for receiving social security disability in the first place, the absolute last thing I want is to have to confront them in a public venue.

But I have slowly been making more and more disabled friends online lately, many of them are very involved in disability rights and advocacy, and I’ve been wondering more and more if perhaps I shouldn’t be more involved, myself.  It’s possible that I could manage it online, but I’m not sure.  The thing is, I feel completely inadequate.  And that seems rather silly, considering the fact that I’ve been dealing with a physical disability since I was 8 years old.  But this disability I have is nonstandard, in a rather infuriating way.

There are three basic types of disabilities: static disabilities, acquired through illness or injury; genetic defects or inherited disorders that are non-progressive; and progressive disabilities, which can be acquired or genetic.  Each of these groups faces a different set of issues and challenges, and our life experiences can be vastly different because of them.

For the most part, the first group lived some length of ‘normal’ life before being thrust into the world of disabilities by a freak accident or illness of some sort.  Generally they sustain their injury, have to adjust to a new life that includes and accounts for that injury, and then go on with life.  There is nothing small about having to deal with a life altering injury or illness.  The pain is sometimes enormous (and often continues long-term), there is often PTSD to deal with, recovery can be arduous and seem impossible, learning to become dependent on others, on meds and/or equipment can be seem near impossible, and the shock of losing what you once had is enormous.

But those who are born with disabilities do not face this same experience.  Those born with non-progressive disabilities have a whole other set of issues.  The view these people have of their disability is often shaped almost entirely by the way in which they were raised.

Raised in a home where they were treated like anyone else, encouraged to get involved, with adults and community members on their side — to advocate for accommodations they needed — many of these people do not even consider themselves disabled, except by the attitudes and obstacles put in their path by society at large.  Maybe they were born blind, deaf, with deformities, maybe they require a wheelchair or an alternate communication device… whatever made them different only made them different, not disabled.  These people often live up to their potential in ways that other disabled people can only dream of… and unfortunately it leads some to declare that disability is only a frame of mind, which sounds great, unless you’re a disabled person who’s truly struggling.  (Some of them, once they leave the bubble of this rather sheltered and positive upbringing, may become seemingly constantly angry against society at large, as they find themselves confronted over and over with disabling obstacles.)

Being raised in a different sort of home can lead to a completely different view of one’s disability.  Some children born with disabilities learn from an early age that they are sub-human, either because people around them are telling them that, or because the way they are treated implies that.  Bullying often starts in the home.  (Many older generations were shipped off to group homes or hospitals and didn’t even have the benefit of being raised in a home… this still happens,  but not nearly as often.)  Even when the home is fine, though, if the adults in their lives aren’t supportive in the right ways, they may face relentless bullying and obstacles throughout their young lives.  If it doesn’t break them, they will learn coping mechanisms, though, and eventually come to a place where they’ve learned how to compensate for their disabilities enough to get through their day to day life at whatever level they can manage, with whatever supports they are able to procure.

The third group ends up with the issues compounded from both of the other groups.  Those of us born with a progressive genetic disorder, or those who have acquired a progressive disability, often make it through part of our lives seemingly normal, or with minimal issues, then at some point the world starts falling apart, and never stops.

I imagine the process is a little easier on those who make it to adulthood before they start declining.  Barring a tumultuous upbringing for other reasons, they’ve probably formed a solid self-identity, gotten through the torment of the teenage years, and had normal relationships along the way.  They’ve got a house built on solid ground, so to speak, that can probably better withstand the storms that the disability will bring.

For those of us who got hit as children, though, it can be a very rough row to hoe.  A child’s body is constantly growing and changing.  Children are constantly learning and discovering new things they can do, and most people recall their childhoods with a sense of wonder and excitement for this reason.  For a child with a progressive disability, though, the constant changes and new discoveries can bring a sense of dread.

Where most childhoods follow a pattern of slowly learning more and more independence, a childhood with a progressive disability is a hodge-podge of starts and stops.  You learn how to walk, then you get to figure out how to deal with not being able to walk, or not as much.  You learn how to do cartwheels and then one day you learn how to cope with the sudden realization that you will never be able to do another cartwheel.  You get really good at a sport, but all that use of your nerves starts to harm them so you have to say goodbye to it forever.   You learn to tie your shoes, and then you learn how to still tie your shoes with hands that don’t move the right way, and then you maybe learn how to let someone else tie your shoes for you, or how to find supportive shoes that don’t have to be tied.  You learn to button your clothes, and then you learn how to alter your wardrobe, because you never ever want to get stuck again in a pair of pants you can’t get out of.

You learn to be fiercely independent, and take care of yourself, until you do too much and get stuck somewhere, unable to move, praying that someone will find you before it gets dark, and that you’ll be able to live through the humiliation.

These may all seem like little things, especially to someone who has dealt with a far more disabling condition, but it’s not so much the individual things themselves but the constant pattern of losing what you work so hard to gain.  Children tend to be very proud of their accomplishments… when they work hard and something doesn’t work it hurts them a great deal.  Just think of your own childhood and I’m sure you’ll remember at least a time or two where you were very proud of something, went to brag to your favorite adult, and got shot down.  I’d venture to guess it still stings.  The hurt of losing independence one has worked hard to gain is much more jarring, and lasts much longer.

Besides, the little things can actually be harder to deal with than the big ones, at least for me.  When my hands atrophied in college it was a huge deal.  It was obvious, visible, all you had to do was look at my hands and you could see something was wrong.  People offered help when I needed it, doctors took notice, no one looked at me funny when I shook their hand limply, because they could tell it was my only option.  I accepted help because it was obviously my own choice in some situations.  When I needed a different type of door handle installed on my dorm room no one argued about it, they just installed it for me.   I didn’t have to fret about whether to try to fill out my own forms ad doctor’s offices and such, because it wasn’t even an option.

But my condition is particularly bizarre, in that my nerves manage to heal themselves partially, from time to time, and after a few years of not overusing my hands they actually gained back some function and the muscles recovered.  They look normal now, and much of the function I lost has returned.  *I* know that I can’t use them much, or they will return to the state they were in before (and on bad days they shut down just the same or worse than they were) but no one can look at me and tell that.  They see normal hands.  If they looked closely they might notice that I can’t really straighten them out completely, that they shake sometimes and with certain motions, that I can’t really squeeze tightly, that if  I make a fist my hand gets stuck there… but no one looks that closely.  They expect me to be able to use them, because it looks like I can use them.  If I ask for help with things now I often get funny looks.  Even when I don’t get the funny looks, I feel funny asking for the help.

While having my hands atrophy and shut down was more disabling when it came to day to day tasks, it was not as frustrating for me in my interpersonal relationships as it is to have partial/intermittent use, and my pride was much less an issue.  And I’ve finally come to the point I was wanting to speak to with this entire series of blog posts.

I do not feel up to the task of advocacy work.  I feel inadequate.

In my personal life, advocacy is nearly impossible for me.  I may be too helpless to get by with the level of independence I’m used to, but I’m not disabled enough to be comfortable talking about the help I need, or asking for it.  And when help is offered, I find it nearly impossible to accept it.

As far as the community is concerned, I can’t go out and give people a pep talk about living with disability, or overcoming the limitations of a disability — as so many other people do — because I’d feel completely ridiculous.  I think most people, seeing me on my good days, with no easily noticeable issues, would feel the same way.  Despite my very real disability, I would feel like a poser.

I’m that person who parks in a handicapped spot and gets out and walks in somewhere with no trouble.  It infuriates you, because real handicapped people need that spot.  Had you seen me try to walk from further out in the parking lot, you might have gotten to watch me stumble and fall, or perhaps get stuck, unable to walk back to my car.  The only reason I can walk in and back out with no problem is because the distance is so short.  But you don’t know that, you judge me on what you see, and I can’t really fault you for that.

In the world of online advocacy work, perhaps this is all unimportant.  Perhaps I can become more involved.  But I’m not sure that advocacy work can stay online and actually do any good at all.  What do you think?

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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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