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.

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?

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

Owning It

After all my thinking I’ve come to a realization.

I think.

And it wasn’t even a result of all the thinking.

Instead a statement from the oddest of places.

“I can’t believe I get to live in this body”

You could practically hear my brain scream “THAT’S IT.”

I can’t believe I get to live in this body.

Not

I can’t believe I have to live in this body.

Which is pretty common statement when you have CP, because if your body doesn’t always do what you want it to do it’s not always your favorite thing and you resent it every once and a while. It’s a part of poor body image that no one ever considers; your image is poor because your body is often at times, well, poor.

Anyway.

It’s not that I had a poor self-image, other than the teenage years and whose self-image is great at that time anyway, but there were times I wished things were different. Mainly why I wasn’t naturally gifted at most things that interested me. I didn’t want to work as hard as I had to to do anything, which included working out.

I knew what I had to do to maintain function. I’d been told it countless times. I didn’t listen. I didn’t want to. I didn’t care. I wasn’t like all the other people I’d been told about. I was different.

I was in denial.
(Am I saying that I spend 20+ years denying that I have CP? Probably, yeah.)

Then I had my wake up call.

And rolled myself off to fix my mess.

Part one was surgeons.

Part two was all me.

And I thought I knew how it was all going to go.

I may talk a big game but I’m still in the early stages of figuring this all out.

I thought I’d recover from surgery, just like I have from all of my other surgeries, and return to some sort of status quo I’d been living with, and hope I’d have a good chunk of time before I had to repeat the pattern.

Because that’s how CP works.

WRONG.

I felt (and still do) so different with my new hips. I have my good (when I could tell my jeans wouldn’t fit) and bad days (when my jeans didn’t fit) with them. At first it was difficult to adjust to them. My brain recognized the correction but often couldn’t get it together to work with it. Even though it was/can still be frustrating it’s amazing.

I’ve come to a level of acceptance that makes every day fun in some aspect.
”Let’s see if I can do this.”

Some days I do.
Sometimes it takes more work.

It’s O.K.
It’s me.

I’m still in shock that this body is mine.

It’s really cool.

Work with what you have & own it.

Keep raising the bar.

You’ll keep surprising yourself.

*A similar version of this post first appeared on an old blog on February 25, 2011

3,000 Words

They say a picture is worth 1,000 words, so this post will be 3,000+ words.

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Why do these pictures illustrate my health focus? Because there are still numerous unnecessary obstacles for persons with disabilities but there are countless people trying to change that, including myself.

I’m participating in WEGO Health’s Health Activist Writer’s Month Challenge. If you want to find out more about Health Activist Writer’s Month Challenge visit their blog, Facebook, Twitter. You can find more posts by searching #HAWMC.

No Hope For A Cure

I don’t hope for a cure for Cerebral Palsy. I’m not saying that there is no hope, that one can’t/won’t be found. I don’t hope for a cure because I like who I am. Chances are there will be a cure found at some point, and probably sooner than we think. And that’s O.K, I guess.

I’ve always known I have Cerebral Palsy. I didn’t find out what that in fact means, for real, until a few years ago. I’ve always been uncomfortable with the idea of being healed or cured for as long as I can remember.

It always threw me off when teachers and other parents would call me a wonderful child and then they’d turn around and suggest to my parents that they should take me to some kind of healer. If I was so wonderful than why did I need to be healed? I understand that things aren’t so black and white now, but these were not conversations to be had in front of a child.

Do you know the story in the Bible when a man goes up to Jesus to be healed and people ask him, “How has he or his parents sinned for this to happen?” (That’s the story more or less). I’m not for defacing books, but I’ve always wanted to rip that story out and act like it was never there to begin with. I get the point of the parable; it just dances on my last nerve when I hear it.

God, or whatever you believe in or not, made me this way. God doesn’t make mistakes, right? So what’s to heal or cure?

There were difficult times in my life, probably more than most people have, if you add in all the medical stuff. Do most people feel bad that I had to go through it and I’ll probably continue to? Sure. But here’s what none of those individuals will ever understand, I wouldn’t change I thing for one simple reason.

I am who I am today and will continue to be because of how I’ve lived.

As Jack Morris once said, “Our human task, if you like, is to not flee from the ill-being but to transform it.”

Here’s an idea I’ve had recently that you may have never considered. I know what my shortcomings are, well most of them, without having to think about it too much. I have a disability called Cerebral Palsy therefore my balance isn’t awesome, anything requiring that I have great balance isn’t for me. Neither is anything that requires me to be on my feet eight plus hours a day (that’s a mistake you only make once).

This self-actualization extends to what I’m good at as well. Having shortcomings gives you the ability to develop other skills that make you stand out.

Some people spend most of their lives figuring out what they’re not good at and vice versa. So in this aspect I think I have a leg up on things.

Growing up I used to wish that I was more like the other kids, at first. But once I thought about it the idea scared me. I’ve known no other life. The unknowns of what my life could be scare me more than the struggling I know I’ll endure. I wonder if I’d settle for less if things came easier, something tells me I would have.

The only regret I do have, if I have to name one is not realizing I had a learning disability until I was almost a college graduate. I wish I had known it sooner so I could’ve learned coping skills for it earlier on. I can’t really attribute it to having Cerebral Palsy; although it is true that learning disabilities are more common in people with CP it’s not a hard and fast rule.

I don’t hope for a cure because I don’t need to be cured. I am who I am and that’s who I’m meant to be. It makes no sense to hope for something you don’t want. I have other dreams to hope for so I’ll stick to those.

*A similar version of this post first appeared on an old blog on March 27, 2013

Why You Shouldn’t Pray For Me

I believe in prayer. However public prayer tends to make me anxious, yes even during mass. Yes, me a budding Catholic theologian has issues with prayer (there’s a reason why I’m a “practicing” Catholic).

I’m pretty sure anyone with a disability, particularly a visible one, has had at least one uncomfortable public prayer experience that they’ll never forget, although they’d really really really like to.

Every time I hear or read about an awkward prayer encounter (much like the one below) I cringe, like Pavlov’s dog and that stupid bell.

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There are a few issues here. If someone says they don’t need help, they don’t need help so BACK OFF. It does not matter how well-meaning you are.

Now, to the actual issue I’d like to address here: Praying for people you don’t know in public. The sentiment is nice, and appreciated, but no (at least as a general rule).

If you feel the need to pray for someone out loud and in a public area, which I have no idea why you would do so, but anyway, ask the person you want to pray for if they wouldn’t mind.

Do not ask anyone else, even if the person cannot speak they can communicate, and will make their wishes known. If they say “no” respect that.

Not everyone shares the same faith and may find it offensive if you just go up to them and start praying for them (I am one of those people, just for the record).

If they say “yes” ask them if there’s anything they’d like your prayers for. I can almost guarantee that you’ll get an answer you weren’t expecting. Most people feel the need to pray for the full healing of a person with a disability. However it isn’t what we always want, especially if that person was born with their disability (like myself).

We are not broken. If you believe in God then why is it so unbelievable that God would create people “fearfully and wonderfully made” just as He made you?

So if you really feel compelled to pray for someone try to find some common ground.

But as a general rule I’m still going to say that you should not approach someone in public and pray for them, and keep your hands to yourself. You never know what potential damage you could be doing to another person, either physically, mentally, or both.

Please don’t pray for me but if you really have to, do it in private. I do not need to know you’re praying for me or why. I’m just going about my day, just like you are.

You Need Legs To Run

For some reason I’ve found myself in the company of runners (at least in the last decade and a half). Occasionally someone would make a comment about my ability (or lack of) to run and I’d brush it off with an accompanying reason, like, “I’m not interested enough to invest that kind of money in a track chair, especially since they’re not covered by insurance.” It wasn’t a lie, but it wasn’t exactly the truth either.

All of the questions/comments were innocent but not all were eloquent, for example, “Blind people run marathons,”

Because blindness and Cerebral Palsy are right next to each other on the wide spectrum of disabilities…..

“You need legs to run. That’s basically my weakest body part,” was the only remotely sensible thing I could think to say (but “ARE YOU OUT OF YOUR EVER LOVING MIND” almost came out instead)

Now I know you don’t really need legs to complete a marathon. Tatyana McFadden has proven that again and again and probably will again. But running using my legs were the context of the conversation so I went with it.

It’s the less than eloquent comments that make me think, am I doing too good of a job assimilating into able-bodied society? (I’m sure there’s a more eloquent way to state that, but I’m just going with my 1st instinct here).

I’ve always thought I wanted people to see past my disability, but do I really? Does seeing past disability mean that it doesn’t exist? If it does I don’t want what I always thought I wanted.

I used to think it was a compliment when someone told me they didn’t see my disability. These days I have 2nd thoughts.

I want to be seen as me “warts” and all; although I don’t see my disability as a “wart” (for the record).

Trying to not see someone’s disability, when it’s clearly visible, seems like a noble goal but it’s far from realistic.

If I’m going to go out with a group of friends “seeing past” my physical limitations can prove disastrous, both with and without my wheelchair.

The goal, for lack of a better word, for anyone and everyone is to be seen as who they are; not ignore or give any more attention to any part of themselves over another.

So are those with disabilities doing a bad job representing themselves if people forget that they have a disability? Is the able-bodied community overcompensating by telling people with disabilities that they don’t see their disabilities?

You may not need legs to run but you need to be seen as your whole authentic self in order to be successful.

On The ADA Anniversary

This week (this upcoming Sunday) is the anniversary of the Americans with Disabilities Act (ADA)

I’ve often wondered if the ADA creates more problems than it solves for some, if not all, people with disabilities. It helps A LOT, but it also causes a lot of headaches.

I’ve come to realize however, that the ADA isn’t really for people with disabilities. It’s for the people who can’t even imagine what life is like to live with a disability.

Kind of like how birthday parties really aren’t for the people they’re throne for but for the people that go to them.

Kinda.

Without knowing it I managed to grow up just as the ADA was finding its “sea legs,” which probably explains why so many aspects of my life have become, in a sense, easier even though my mobility had had an endless ebb and flow.

I once heard it said that, “those who don’t need the law are truly freed from the law,” or at least that’s the best my brain remembers it as.

The idea being (I think) that we wouldn’t need as many laws (or any) if everyone operated with the same level of moral decency.

As great of an idea as this is I doubt it will ever happen, ever. Sorry all of you who dream of world peace.

It would be nearly impossible for someone to be able to imagine what it’s like to live with a disability, unless they do in fact live with a disability themselves; besides the fact that imagining it and living it are two different things.

That’s why the ADA is so important.

It gives people a clue into what’s needed in order for people with disabilities. Although it should be pointed out that what’s deemed ADA compliant doesn’t mean it’s accessible for those who need it to be, but it’s better than nothing.

(So if you don’t know anything about the ADA feel free to read up)

As much as I (and countless others) benefit from the ADA there always seems to be something new to learn.

Such as how many loopholes there are.

Like the loopholes for already existing buildings and/or religious institutions.

As a Catholic who works in a building that’s been “grandfathered in” (multiple flights of stairs and no elevator) I curse such loopholes often.

It would be nice if there were less (or no) loopholes in the ADA but that’s only a short term dream. Someday I’d like it if the ADA was an afterthought, making it in a sense unnecessary because access for all is a natural thing.

It seems so wildly unrealistic, but I can hope right?

*A similar version of this post was written on July 22, 2014

Reflection On Activism

My journey to activism has been interesting. Honestly it started on a whim, because someone asked me to join her on a panel. Being an activist was for other people, not me. After all, what could I offer that someone else couldn’t?

Apparently I underestimated myself and the CP community. When I looked for someone with a story like mine all I found was mine, and even that wasn’t out there.

When I put my story out there I did it slowly since I had no model for it. In fact I didn’t talk about my diagnosis during the first few years I maintained a blog. I’m not sure why I did that looking back on it now. I do remember thinking that I shouldn’t bring it up right away, although I can’t remember why I thought that.

I’ve said before, but it needs repeating, that I wish the CP community was more of a community than it is now. I wish there wasn’t the massive divide between parents of CP kids and people with CP. It’s practically like there are two different communities, at least that’s what I think.

For a disability (health issue) to be around as long as CP has and not have a strong community is still confusing to me. I’ve said it before, and I’ll say it again, we could really learn a lot from the CF community (as just one example).

I never would’ve thought I could make a career out of disability awareness and activism but I have. It’s been interesting and surprising for sure. I’m still surprised when I get a request to come speak and/or write an article.

I always wondered how people “got into” the public speaking business and now I know of at least one way, although I’m almost positive my journey isn’t the norm.

Who goes from a panel discussion straight to breakout sessions at conferences? Again, just one example.

My biggest (and probably very unrealistic) hope is that someday I won’t have to be an activist/advocate in the future. I’d like to think that eventually we won’t need to be so on guard to advocate for full inclusion of the disability community into able-bodied society. It’s a Hail Mary of a goal but it is what it is.

I’m taking part in The Health Activist Writer’s Month Challenge this month (also known as #HAWMC).

The Key To Happiness Is…..

Happiness can be hard to come by, at least for some people. So what is the key to happiness? I don’t think there’s a one size fits all answer to that question, and if there was someone(s) would be very rich, and the world would be a much more pleasant place to be.

I think being able to overcome a hard time can make a person happy but I’m not sure the feeling of happiness lasts if you have a chronic condition. I mean what makes a condition chronic is that it never goes away and you probably have more than your share of difficult times to get through so I’m not sure everyone with that sort of lifestyle finds happiness after difficulty every single time. But it’s possible.

Laughter is always a winner, at least for me, if I’m laughing there’s a pretty good chance that I’m happy because I’m either doing something that makes me happy, with people who make me happy, or with people who make me happy doing something that makes me happy. And laughing.

Some believe that maintaining a positive attitude makes someone a happy person but I question whether those two things are in fact interchangeable. I think one can have a cause and effect relationship but I don’t think it happens all the time, at least not for everyone, but it certainly does help.

Some believe that happiness is a choice. I have to admit I wish it were that easy. I wish I could choose my mood as easily as I pick out what socks I’ll wear today and that would be that but it’s not that easy, at least for me.

Others believe that happiness is a journey, not a destination. You become happy through a process. It’s not waiting for it to occur. I’m probably most inclined to believe this theory but not 100%.

In my opinion happiness is in the eye of the beholder, and how one achieves happiness is unique to the individual.

I’m taking part in The Health Activist Writer’s Month Challenge this month (also known as #HAWMC).