Cerebral Palsy: The Review

Another Cerebral Palsy Awareness month has come to a close. In year’s past I’ve come up with some kind of “wrap up,” this year I have nothing. The tank is empty.

Note to self: do a better job organizing posts to avoid blogging in circles.

Another note to self: Make plans.

Additional note to self: keep a file of topics and questions.

Here’s A Complete Listing Of This Year’s Posts:
End The Word
What Is Cerebral Palsy
The Matter Of Privacy
Athleticism + CP = ?
Things That Make You Say Ow
BYOC
Life Without An Off Switch
Hide & Seek
CP is a Finger Print
Is This Thing On?
Of Ice & Pies
Gifts Of CP
It’s Not Easy Being Green
CP See, CP Do
Brain Matter(s)
Confessions From A CP Adult
An Ode To Sweet Caroline
Cerebral Palsy Awareness Day
Is Disability A Choice Or A Destiny?
Acknowledging Your Personal Puzzle
A Deck Of Cards
PwDs Are People Too

Lists of posts from years past:
What Is Cerebral Palsy Anyway: Review
March = Cerebral Palsy Awareness Month + Review
HAWMC Recap

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PwDs Are People Too

For some reason people with disabilities (PwDs) are often seen as less than human or in some way super human, and this is just one of the many binaries we get put into. It’s frustrating, but at the same time a fact of life that we have to deal with, no matter the disability.

Just because I have CP doesn’t mean I don’t deal with the same things “normal” people do.

I get up and I go to work every day, just like everyone else.

I go to work and I make a life for myself, just like everyone else.

I’m making a life for myself, it may not look like I thought it would but I make it work, just like everyone else.

I’m making it work, sometimes because I don’t have any other choice, just like everyone else.

I make choices every day to get one step closer to my dreams and goals, just like everyone else.

I redirect my focus when my choices don’t get me one step closer to my dreams and goals, just like everyone else.

I make plans for what I think my life will look like in 5, or 10, or 15, years, just like everyone else.

I get mad when things don’t go according to the plan I had in my head, just like everyone else.

I lay in bed almost every night and think through my day, just like everyone else.

As I think though my day I think about tomorrow, and the tomorrow after that, just like everyone else.

As I think about my tomorrows I fill them with my dreams and hope that one day they will become reality, just like everyone else.

Next time you think a person with a disability is just so much different than you are think about what you think about every day. There’s a good chance that person with a disability is having at least half of the same thoughts you are that very same day.

 

A Deck Of Cards

I was sitting in a prospective student orientation hearing school statistics. In an effort to create a diverse school environment administrators had percentages they tried to maintain. It didn’t take me long to figure out my admission would be a slam dunk.

And it was. I was admitted; attending was another story.

It’s my first memory of thinking that my “different-ness” could be an asset.

It took me a few years to realize that this was indeed a disturbing thought for a 4th grader to have. That doesn’t mean that there were/are situations where this fact holds true.

There are times when I’ve tried to use having a disability to my advantage. Once you let the genie out of the bottle there’s no getting it back in, so you have to be careful..

 Life consists not in holding good cards but in playing those you hold well.”–Josh Billings

 Some time during high school I realized that my life was like a deck of cards. Sometimes my disability can be my ace in the hole. Sometimes it’s a joke(r). Other times it’s just another card in the deck.

I’d like to say that most often it’s just another card in the deck. Honestly that’s what I’d prefer. However that’s not how the world works, at least not now, but maybe someday.

I don’t walk around highlighting the fact that I have Cerebral Palsy. Just uttering the words “Cerebral Palsy” leaves people dazed and confused. It does open the door for educational moments but most of the time I don’t have the time, or the energy.

When it comes to day to day living I keep things as general as possible, but it’s pretty obvious I’m in the “otherwise abled” category. I prefer to see myself as just another one of “the guys” for a lot of reasons; a big one being I don’t want to hold my disability over people’s heads.

Think of “The Boy Who Cried Wolf” story we’ve all heard. If I brought up having Cerebral Palsy all the time what would that do? It would raise awareness, but would that be for a greater good? I doubt it.

There have been times when I’ve been looking for employment when I wondered if full disclosure would actually work in my favor. I mean companies put disclosures at the end of applications for a reason (& I’m sure they have quotas to fill, just like that school).

There have been times when I really wanted “that” job so the thought of using my different-ness as an asset crossed my mind. But how does someone do that without the potential for backfire?

I’d rather be the best one for the job when compared to other candidates. Not the candidate that filled a quota. I really don’t want to be the person who can’t do a job that everyone knows was a pity hire. (I’d rather not have a job if that’s how I get them)

Having a disability does leave room for other abilities to develop. It’s one of the best reasons to have a disability, in my opinion. As tempting as it is to broadcast my disabilities/abilities for my own advantage, it’s more important to show what I can do and let the work speak for itself.

Life is a deck of cards. Play them well.

*A similar version of this post was written on March 6, 2013

Acknowledging Your Personal Puzzle

There are a fair number of analogies of what it’s like to live with a disability, I find some more accurate than others, but countless people disagree with me, which is why there are so many analogies.

There’s also something to be said for basic language around disability, person first, identity first, whatever.

There’s so much to be said about so many topics that divide the disability community but I think I’m starting to find a common thread in all of them.

The path to self-acceptance or one’s own disability.

While I sometimes forget I have Cerebral Palsy, it took me a while to accept the fact that I had Cerebral Palsy, and that it did in fact inform every aspect of my life.

Once I figured that out I thought my life would get easier, at least somewhat, mentally, but it’s not really like that. It can actually be hard to be conscious of how your disability is integrated into your everyday life, especially if you find yourself thrust into the world of activism.

At what point do you highlight your disability, especially if it isn’t visually obvious?

How do you identify as disabled?

To what extent do you bring attention to your disability?

The Cerebral Palsy community is an interesting one, for various reasons, but not limited to how much a person allows CP to be part of their life. It’s always a piece of the puzzle, but the size of the piece is the question.

Some get to make the choice, others don’t, to some extent.

Making the conscious decision to embrace it, and all the opportunities that come your way because of it is a completely personal decision.

As someone who didn’t embrace their disability until their 20s I wonder just way I waited so long. I’ve gone back in my head wondering what and/or when I would’ve done something differently multiple times and I can’t come up with and I can’t come up with something, anything, that I would willingly change.

I guess that’s one of the pieces of my own puzzle.

Is Disability A Choice Or A Destiny?

Would you believe that sometimes I forget I have Cerebral Palsy, and that’s one of biggest things that makes me different from most people?

So sometimes it catches me off guard when someone makes a comment about it, not unlike this one:

 

Here’s the thing most people don’t get: from a disabled person’s point of view there isn’t another option, especially if their disability doesn’t come with a before & after, like Cerebral Palsy.

It’s only when we’re presented with a different point of view that you realize you’re different.

That there’s a chance you may not be able to do the same things in the same way as everyone else.

But that doesn’t really occur to you until someone points it out, and that your way is seemingly more difficult than the “normal way.”

You can think about it every time someone brings it to your attention but it’s easy to get dragged down that way, so if you’re me you try and avoid situations in which people might bring it up.

There’s also something to be said about making the conscious decision to not give yourself the option to do something, like letting your disability stop you from doing something, or anything.

It’s almost like when someone thanks you for responding favorably in a crisis. Sometimes there is no other option, at least not one that would end well for you (and probably other people too). Think of a first responder receiving an award and their response is, “I was just doing my job.”

Not “letting a disability stop you” when you have a disability is “part of the job.”

Because the only other option would be to stay in bed forever or kill yourself, and neither of those sounds more appealing to me.

Speaking for myself there are times when I do let the fact that I have Cerebral Palsy stop me from doing something I want to do (although I wish I had the choice with some “need to dos, if we’re being honest). But on the whole I don’t let it stop me.

I don’t let it stop me, because I don’t know any different, unless someone points it out.

I don’t let it stop me because there isn’t another choice.

Cerebral Palsy Awareness Day

I’ve made no secret that I’m not the biggest fan of awareness days, yet I feel obligated to participate in them. Tomorrow is National Cerebral Palsy Awareness Day in the US, not to be confused with World CP Day which occurs during the fall.

Last year there was (finally) a senate resolution officially designating March 25th as National Cerebral Palsy Awareness Day.

I’m not one to keep up the daily goings on of the senate, or any other governing body, so I don’t usually read official documents, but I read the resolution to see what it entails.

S.Res. 400 is a bit of a disappointment, unless I’m misunderstanding the purpose of senate resolutions, and if that’s the case someone please feel free to explain it to me.

All it says is what we already know, or information that can readily be found during a basic internet search.

I was hoping for something more, even just a little bit more.

I know the government is deeply divided but if this has become standard operating procedure in order to get our elected officials to agree to known facts than maybe we need to reexamine how things are run and who we are electing to run things.

So the government needs to agree that a condition that’s been around for 100s of years before agreeing that it needs recognition. Does this not sit well with anyone else, or is it just me?

We have a resolution that says tomorrow is National Cerebral Palsy Awareness Day. But what does that really mean? More importantly, what comes next?

march-25th-is-like-and-share-cerebral-palsy-awareness-day

*A similar version of this post was written on March 25, 2016

An Ode To Sweet Caroline

Almost a year ago I (finally) met my new comrade, named Caroline.

Caroline

Yes, my wheelchair has a name.

You honestly didn’t think I’d let a CP Awareness month go by without a post about wheelchairs, did you?

I came across a vlog recently that sums up some of how I feel about wheelchairs, and the choice to use them.

I don’t know why people have such strong feelings, that they feel need sharing, about something that should be a personal decision. For me, a wheelchair isn’t a hindrance. Instead its independence.  Part of the reason why I gave my chair a name is to make it (or should I say her?) more approachable. A wheelchair isn’t a symbol of loss, it’s a symbol of modification.

Confessions From A CP Adult

I’ve started this post about half a dozen times. It doesn’t happen to me a lot, at best I reorganize but this is one of the few blank slates. Most of my CP related posts I don’t come up with on my own. They usually start with a tweet, a post, an email by someone else, or a conversation with someone.

Rather than do a full on post explaining every detail I can think of about one CP related topic I wanted to get real, as in the real me living with CP. This may hurt a little, just so you know.

* I use my wheelchair more often than I probably should. Sometimes I just find it to be more socially acceptable. I also like being able to board planes first & having active duty service members follow me, especially Marines (although I dislike when they call me ma’am).

* It’s easier to explain why you use a wheelchair than explain why you walk funny.

* I have CP. I don’t suffer from it. The only thing I suffer from is misunderstanding, misjudgment, and plain old idiocy……..of other people.

* Not everything a person with CP does should be labeled inspirational. “Milestones” like getting your license or graduating from high school (and at this point even college), getting a job should be considered expectations.

* We are no one’s hero just for being average. Average is the goal. Leave it at that.

* “The R word” doesn’t bother everyone (like myself). However it does bother a whole lot of other people so just take it off the table, along with every other word that makes people with disabilities look bad.

* Just because someone has a disability doesn’t mean they don’t have loads of abilities in which you lack. Think about that.

* It is in fact possible to take advantage of having a disability (see my first point). I don’t do it often. I feel its “bad for business,” so to speak, to do so, but that doesn’t stop me. Every membership must have some benefits after all.

* It’s typical to be asked questions (and/or stared at), even a few that are completely asinine, but it can get annoying. Most people don’t mind answering them, please be thoughtful, and don’t get mad if someone doesn’t want to answer your question(s). The internet is great for finding answers, if you haven’t heard about it.

* People with CP are individuals first, just like the “average” person. Therefore we do not all have the same job, living situation, or social circles. Suggesting a desk job for someone simply based on your perception of their limitations is like giving someone a life sentence for a lesser crime (bad analogy, I know, go with it).

* CP is one of the most common childhood disabilities; therefore it’s pretty common for adults too. A small group of people know this; it can feel like a smaller group of people actually care.

* It’s amazing how common CP is, yet how little people actually know about it.

* The last thing someone with CP wants to do when suffering with a non CP related health crisis is explain to everyone what CP is. Treat the crisis then have an educational moment.

* Sometimes I avoid situations because of the social pressure to be a role model when I just want to be myself.

* I’m a person first, please treat me like one.

* It’s possible to forget you have CP with nothing to compare it to you’re constantly living in a normal all your own. Sometimes it takes passing a mirror for my brain to actually get it so for low maintenance girls (like myself) I can go days without really seeing myself in a physical sense.

* Not everyone is into adaptive sports (or other activities). That’s O.K.

* Few people with CP have friends with CP. I have friends with other disabilities/medical conditions but they were not sought out. They came into my life. Some became fantastic friends, others I’ve wished well and gone on my way.

*A similar version of this post was written on October 2, 2012

Brain Matter(s)

I remember my 1st meeting with my physiatrist. I didn’t want to be there. I had already seen a physiatrist I liked. I was only there because she wanted me to consider having him take me as a patient instead, but he was on time (not doctor time, actual people time) and he seemed to wanted to be interested in all of me, not just parts.

After his “litany of questions” (which is really what he called it) he said something that caught me off guard.

“Now if I were to look at a CT scan of your brain I guess I would probably see……”

I never put much thought into what Cerebral Palsy had done to my brain, mainly because the focus had always been on my muscles & bones, I wasn’t diagnosed with a learning disability until my early 20s & even then I didn’t think it was CP related, learning disabilities are in my family so I saw it as something that made me more “alike” than different.”

Admitting that this postulating what my brain looked like was what sealed the deal in agreeing to be under his care would be a lie, but it did play a part in my decision.

I haven’t had many CT scans in my life, and only one of my head, but they were looking at my sinuses, not my brain. Intrigued I asked if he would be ordering a CT scan of my brain, adding that I wanted to see it for myself.

No

Why?

Well OK then.

For the record, I still want to see what my brain actually looks like.

It’s hard to understand a condition that you can’t always see the root cause of, never mind try explaining it to anyone else, no matter how educated you are on the subject.

People like to be able to see things, to touch them, hear them, anything tactile really.

Cerebral Palsy isn’t like that, instead it’s like trying to find the leak in a pipe. You have a puddle on the floor from the water dripping from the ceiling but you don’t really know where the water is coming from, except with CP you may never be able to actually see the true source of the leak.

CP See, CP Do

“Breaststroke, drill, 6 count glide.”

My coach says at some point during practice, somewhere between warm up and the time when I wish I was in bed sleeping.

I love breaststroke, even though my stroke is 100% pull and 0% kick, so just hearing the word “Breaststroke” makes me happy (or slightly less unhappy depending on the previous set).

But hearing the words, “Breaststroke, drill, 6 count glide,” at this point makes me roll my eyes (thank goodness for darkened goggle lenses).

Although it’s my favorite stroke the drills are killer.

Why?

I have no back end to speak of, literally I’m working with half of what everyone else has at their disposal, especially in Breaststroke. I’m well aware of this, at this point almost everyone else is too, but that doesn’t get me out of doing drill work, and on the rare occasion it does I’ve at least tried the drill.

But this time is different. I know I’ve done this drill, my brain just can’t pull it up. So, I turn to my teammate, “It’s pull, 1-2-3-4-5-6, pull, 1-2-3-4-5-6, pull. Right?”

She puts her arms in front of her and does the drill using every verbal cue to match the visual cues. My teammates (and coach) also know I do better with visual cues and having verbal cues doesn’t hurt.

I stay behind as everyone else heads to the other side of the pool. I’m sure I know what I’m doing but I want to be really sure. I scan across the lanes and pick someone to watch.

“The goal isn’t to go fast. Make it clean,” my coach says standing behind me. This isn’t new either. Although I took up swimming a few years ago, drills are still new. My brain is used to stop or go, not maximize what you have to use less energy. She’s now used to giving me a single focus, spelling it out before I completely tire myself out trying to do what I think I’m supposed to be doing.

“Don’t go fast. Make it clean,” I say outload and scan across the lanes one more time before I push off.

Pull.

1-2-3-4-5-6.

Pull.

1-2-3-4-5-6.

Pull.

I’m saying everything in my head while I’m doing it. Keeping my neck long and straight with my head down all while my arms wobble erratically in an effort to keep my body balanced. My chest is starting to burn and I can feel my heart beating lightly in my ears. This doesn’t feel like what I see anyone else doing.

I forgot to breathe. When am I supposed to breathe? Oh, yeah. 5-6.

Pull, breathe.

1-2-3-4-5-6.

Pull, breathe.

It’s better but still awkward. Eventually, pretty much an eternity, later, I touch the wall.

“That was a really nice Butterfly pull at the beginning of that last one,” my teammate says with a smile on her face. She knows I messed up & I didn’t realize it. I didn’t do a Breaststroke pull until my 2nd pull.

I’m mad, but at myself. I can’t even do things I like right, never mind well.

I remind myself why I’m here & why I’ve stayed with this group. A few months ago, I would’ve finished out practice and kicked myself until the next day, at least, over it. Now I know no one really cares how I do the fact that I try to do it is enough.

I’m lucky that I’m with a group of people who care about how I do but help me keep my personal expectations in check. I want to do things perfectly the 1st time every time. No one can do that. When someone laughs, they aren’t always laughing at me, they’re trying to get me to laugh at myself, because they’ve been where I am.

I’ve even luckier that I have a group of people I can watch. I can see it before I do it rather than just thinking I know what I’m supposed to do. I have a good idea of who to watch depending on the stroke, distance, and/or drill, and it really does help.

I sometimes joke that my team is a motor planning think-tank because sometimes it’s how I can get the most out of practice.

  • See it.
  • Plan it.
  • Do it.
  • Make needed changes.