Why I: Am An “In-Between-er”

I’m always looking for topics to relate to or give my two cents on. I’d like to say it’s because I like to keep up with what’s going on in the disability community, particularly for those living with CP obviously, but the truth is sometimes it’s just hard to think.

There’s one video in particular that I tend to think of when I’m asked about my physical abilities.

I, like Amanda, am very much an in-between-er.

If you ask anyone who has been involved in my medical care I’m pretty sure they’d agree as well, at least medically. It’s been a case of “this or that” ever since I can remember.

If I stopped to think about it my day to day life hasn’t been much different either.

-I’ve been labeled “too disabled” and “not disabled enough” in the same conversation.

-I may have hiked one of the most famous mountains in the Northwest but I can’t get through the grocery store without some form of pain, and let’s just not talk about discount stores.

-I can navigate some of the biggest airports in the world but I can’t drive myself down the street.

-I can swim faster than most people I know but they can walk faster than I can run, ever.

-I’ve taken care of groups of children with great success on my own, yet I’ve had people doubt my ability to care for a child of my own (and I don’t even have a child, at least not yet).

-People assume I live off the government, which is wrong, I don’t receive any government assistance and I am currently debt free.

-I have a learning disability but I was often in the top percentage of my classmates in my academic career.

-I can cook dinner for a group of friends but I can’t carry a cup with something in it without causing a spill, usually.

-I can lift (and/or press) more than my body weight, but if someone bumps in to me, even slightly, I’ll often stumble.

-I’m seen as young and capable in the everyday workplace but too old and risky in medicine.

-As much as I’ve accomplished I’m constantly having to prove myself.

-I have been judged for being too disabled & not disabled enough in the same conversation.

-I’ve had once in a lifetime experiences that not everyone gets to experience yet I struggle to complete tasks people do every day.

-Just because I can or can’t do something today doesn’t mean I’ll be able to do it tomorrow and vice versa.

*A similar version of this post first appeared on an old blog on September 19, 2013

On Marathons & Misconceptions

There used to be a meme floating around F@cebook about F@cebook in college vs F@cebook in your 20s & 30s, basically in college your timeline is full of party pictures and other events whereas in your 20s & 30s your feed is filled with baby pictures and marathon times.

Well the joke’s on social media because the 20s & 30s timeline started in my college days, at least the marathon times part.

For as long as I can remember I’ve been friends with people who have considered themselves runners, probably just as long as I’ve had swimmer friends. In fact, I had friends who would just run laps around the playground at recess. I’d sit there and watch, wondering what the appeal was, because even if I could run there’s no way you’d see me doing it, especially for fun.

I’ve even had housemates who have never run a marathon before run in one because we lived in a town that hosted a marathon every year, while I stayed home and watched Walk The Line, again. Yup, I’m that person that can’t even be bothered to get up early to wish people luck, although I’m pretty sure I told at least one of them “just don’t die,” at some point before the day of the race.

During the 1st group retreat I made in the Northwest while people were asking each other how they liked their new homes. At this point most of the runners in the group were aware of the fact that my house was in a marathon city. There was a small window during that weekend where I thought we’d have countless people in our house, people we barely knew. Although I don’t think it would’ve bothered me as much by the time of the marathon came around, a small part of me is thankful that it never came to fruition.

I remember one person in particular asking me if I had heard about the marathon and if I was considering running it. Now I realize that at this point she had only just met me but I thought it was pretty clear that I was having some trouble getting around the wide open spaces of Eastern, flatter than flat, Montana. But then she asked if I ever thought of getting “one of those wheelchairs you can run with,” before I could laugh.

I explained that it was hard enough to get anything covered by insurance and something like a racing chair is horribly expensive, especially if it’s made well and for the user (which it should be whenever possible), and not covered by insurance because it’s considered recreational. Still she encouraged me to consider it “because people with disabilities run all the time.”

Lest we forget I find staring at a black line at the bottom of the pool a lot less boring than running just because. I’m aware it makes no sense to a majority of people but I’m not one of those people. I admit that running a marathon is mentally and physically challenging (like swimming) it’s just not a challenge I’d find fulfilling (I don’t think).

That being said if the so-called “runner’s high” is even a fraction of the rush you get after a sprint set with a new personal best time then I maybe, sort of, kind of, understand why people run.

I think the able-bodied community has misconceptions about persons with disabilities and sports. In my case it seems to be that people think I’m all into every sport I can get into or I participate in sports as a form of therapy (and I’m sure there are others out there I just haven’t heard them). The truth is, neither one is the case, for reasons to lengthy to get into here and now.

Honestly I had a negative point of view of adaptive sports for many years, partly because they seemed too separate from “real sports” for me. Also I was usually one of the least disabled kids participating so I didn’t understand why I couldn’t just play with the normal kids, because I saw myself as more able-bodied than disabled.

Once I understood the true nature of adaptive sports I kept my ear to the ground but wasn’t very optimistic because adaptive sports costs money, just like able-bodied sports. And at that point, as well as this point, I don’t have much money for stuff I might quit anyway.

People with disabilities are more like those without disabilities than people think. I think I’ve said this before, and more than once. We’re just as apt to like sports or not like sports as everyone else.

However, I will say that whether or not someone has spent most of their life in physical therapy in exchange of, or in addition to normal childhood sports related activities can have an effect on whether or not they’ll participate in recreational sports later on.

Let’s not forget that things like having surgery and the recovery process can be marathons within themselves.

I realize that I probably just contradicted myself but my last 3 points in particular were ones that I feel needed to be made, even if it does make my point less clear, because my points, like life, aren’t always clear but still important.

Running is great, but it isn’t for everybody, regardless of ability. If the only grounds for participating in an activity was the slightest chance of basic ability, then almost anyone or rather almost everyone would participate in Ironman Kona, climb Kilimanjaro, be a multi gold medal winning Olympian, and God only knows what else.

Not everyone is meant to be good or interested in everything but if you know someone (or are someone) with a genuine interest in an activity, especially physical, be as supportive as possible (or try to seek out as much support as possible). Desire is one thing. Talent is another. Access is yet another, which is often overlooked and/or taken for granted.

If Things Had Gone According To Plan

I probably could’ve included this post in last month’s topics but it seems to fit better now than it would have then.

I have several friends who have birthdays within one week, at least 3 have their birthday on the same day. So you can imagine what it was like in college when everyone turned 21. We probably should’ve just had 1 big party and called it a day.

It’s around this time of the year that I usually think what would’ve happened if things had gone according to plan.

I haven’t always been this way; in high school I became aware of the pro-life/pro-choice debate. For one, girls around me were getting pregnant and people were becoming more in touch with their convictions. Does one have to do with another? For some people, probably.

Then there was one day in American Law (I’m still not sure how I ended up in that class) when the teacher decided that we would talk about the current court case dominating our local news.

A pregnant woman had been killed and her baby was delivered by emergency C-section. The baby lived on life-support for a number of days before dying. The person who killed the woman was in jail awaiting trial but now that the baby had died there was debate as to whether they should be changed with murder of one person or two.

We, as a class debated about it for a while before the teacher told us what the paper had published (because few of us, if any, had read it yet).

The person was only charged with 1 murder because the baby “was not alive,” according to the judge.

“So this judge is basically saying I don’t exist.”

I have this habit of saying things under my breath during class, but I usually sit in the back so it’s not the problem you would think, unless I was sitting in back of a friend who is keenly aware of this habit.

Babies are typically born between 37-42 weeks’ gestation. The baby in question was delivered between 38-39 weeks.

I was born at 32 weeks.

My friend knowing this, and hearing my comment, brought this to the teacher’s attention (and basically kicked the soapbox in my direction).

She and I also started a running debate, that continues to this day, over which one of us is older because she was born full term in March whereas I was born preterm in February instead of full term in April. I should be younger than her, but I’m not 🙂

Our teacher, wanting the class to be fully engaged in debate whenever possible tried to make the case that I was different than this now dead child, other than this baby had died and I was very much alive.

“But the baby needed oxygen”

So did I.

“The baby needed a feeding tube”

So did I.

“But the baby was sick”

“Well wouldn’t anyone be traumatized by what this kid had already LIVED through?” Thus causing distress than would translate into sickness.

“The baby wasn’t born at full term”

“Not according to any credible medical textbook ON EARTH”

Back then I was 210% pro-choice, but this really got under my skin. We had talked about how every court case has the potential to effect the outcome of future cases. Which this was apt to do given the “when is a person a person” debate. But this had another element to it.

A judge was, in a sense, saying that I don’t exist. Me, the person sitting in 2nd period American Law. A, then, senior in high school. Wasn’t alive. Wasn’t a person.

I don’t remember how class ended that day but I do remember saying “Well then don’t talk to me. I’m not here. I don’t exist,” and didn’t talk to my fellow classmates for the rest of the day. I’m not sure what point I was trying to make back then, nor do I think I made that point. But I made an effort.

I disagreed then much to the same extent that I disagree now.

That class, that particular day, still sticks in my mind, particularly around my actual birthday and my “should have been birthday.” It’s funny how thinking about someone else’s life made me really consider my own, quite possibly for the first time in my short life.

If things had gone according to plan would I be the same person I am today? Probably not.

For one thing I’d have to share my birthday with more people than I already do. I do like sharing my birthday, in fact I feel weird (and embarrassed) when all the focus is on me especially when everyone is singing “Happy Birthday,” but the idea of sharing a birthday with many more people freaks me out just as much.

I probably wouldn’t have Cerebral Palsy; therefore, I would probably need to work harder to standout (which could be a good thing some days).

I wouldn’t have the same opportunities in life.

If things had gone according to plan, I might not have the same stance on “what makes a person a person” that I’ve had, and have now.

I know many people wish that things had gone according to plan at least a few times in their life. I get it. I wish some things would have gone differently too. But I don’t think a lot of people think about what would have happened if things had gone according to plan.

If things had gone according to our plan all the time we’d probably find something wrong with that too.

It’s possible that things not going according to plan ends up being the better path. The life you got, even though you didn’t ask for it, is the best life for you. It doesn’t work out that way for everyone so take what you have, what you can get, and run with it.

When Cute Isn’t A Compliment

I’ve often wondered if people with disabilities are more likely to be extroverts or introverts because I like being by myself. It’s true I’m an only child so I’m used to being alone. I’m also used to being stared at by passersby, so much so that it’s really easy to ignore, and think I’m in my own world.

I hate getting up early but I like getting places early (or late at night) to have the luxury of interacting with as few people as possible. I don’t hate people but I certainly have a limit, and it’s about the time when people I don’t know outnumber the people I do know in any given space.

There’s this thing that happens when you have a visible disability, people feel that they can come and talk to you for any reason at all (it has it’s good and bad points).

Then there’s another thing that happens, you feel like you’re forced into phases.

For me both of these things have a lot to do with being called “cute.”

In my 3+ decades on this earth I have never been called, attractive, pretty, or beautiful (by anyone outside of my family). I’m always “cute,” and although it’s usually well meaning (I hope) it gets tiring after a while, especially when a compliment is about you but not directed towards to you.

There’s this lady in particular that comes to mind now when I think about being called cute, and why I don’t like it, and how it comes off as insulting.

I see this lady almost weekly in the locker room, once I saw her in the parking lot and didn’t get out of the car until she was in her car, and it’s like a scene out of Groundhog Day.

The first time was nothing unusual, although rude. I had gone into the bathroom stall and I heard her ask my mother if I was her daughter and that I was cute.

The next time we saw her she repeated her sentiment, except this time I was in front of her and she didn’t talk to me. Instead she spoke only to my mother and only smiled at me when my mother told her how old I am.

The next week I saw her and tried to avoid eye contact. I was wearing a new suit and I knew it was highly likely that I’d attract her attention. She did talk to me, but like I was a toddler, telling me that my suit was “very pretty” and getting into my personal space. In fact, if I didn’t back up (another benefit of using a wheelchair) she would’ve touched me, which is never OK. The talking is one “no” the near touching is another “no.”

This lady isn’t the only one who has ever treated me like this, especially lately, but she’s one of the not-so-few that stands out the most.

Her, and being picked up, literally, by an associate. As in “I bet I can pick you up” .5 seconds later I’m in midair.

One incident really has nothing to do with another, other than the being treated as “the other.” Because when you think about it would any of this have happened if I were able bodied? Maybe, but unlikely.

Which led me to think about how I’ve been referred to over the years. I can’t ever remember being called attractive, or beautiful, or pretty, or anything else. Then I pretty much ranted for days on the subject.

I won’t go as far as to say that I live for the day when someone calls me something other than cute. My worth isn’t solely based on what others think of me, especially people I don’t know well enough to trust their opinion. But cute isn’t a compliment when you’re hearing the same thing, and in the same way, in your 30s as you did at 3.

At some point “cute” isn’t as much of a compliment anymore (and someone in their 30s is well past that point, if you ask me).