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

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.

Is This Thing On?

My of my biggest worries as a blogger is that I repeat myself. I’ve been at this for long enough now that I know it’s more likely to become a reality, therefore I have tried to be better about organizing my posts.

However, I almost wrote a post today that was going to be almost identical to a post I wrote last year, almost to the day.

Are you creeped out? Because I was, kinda.

I feel like I’ve blogged myself in a complete circle.

I may be on the verge of an existential bogging crisis.

I don’t want to keep reposting previous posts, although sometimes they do have their place, but what else do I have to say?

How much more can I write about Cerebral Palsy & what it’s like to live with it?

My brain can only crank out so much information before I’m just shouting into a void, regardless of what anyone else thinks.

The last time I felt this way I was told it was OK if I repeated myself because people needed to hear it again, but even that can only last so long before I sound like a raving looney tune.

Social networks have been great to me in this year’s undertaking. See a tweet. Have an idea. Write a post. Include tweet in post. Add post to retweeted tweet.

But I don’t feel like that can carry me though the rest of the month, or even through the next week.

I could get ideas from my podcasts but here’s the thing with that: as soon as we stop recording I forget everything I’ve said, which makes doing the show notes interesting (because I have no interest in listening to myself).

I know people are reading, sharing, and commenting.

Is there anything you’d like me to say, or try to say, that I haven’t already said?

I’m hesitant to promise an “ask me anything” type post but I’d be willing to give it a shot if people are open to hearing what I have to say (or not hearing anything if I deem something off limits, but I’ll disclose that).

Let’s Talk About Porn

Having a blog and a podcast is an interesting experience. Granted I didn’t think I’d be podcasting for that long. I thought it would be a sprint rather than a distance event, which this venture has now seemingly turned into.

I wanted to share our latest recording, and for a few reasons (1) it’s an important topic, (2) I didn’t feel the need to write down what I’ve already said, (3) I want your feedback on the topic.

I’ve talked about inspirational porn before but being able to have a mainstream TV show address it in a relatable way opened a door for me to be able to see the topic in a different way.

speechlessabc_fanpodcast_v02

Listen to H-E-R–HERO

How do you feel about inspirational porn?
Where or how do you think started inspirational porn?
Do you think inspiration porn started with Tiny Tim or someone else?
Did it start with the saints or maybe the life of Jesus Christ?
Do you think we’ll ever be able to get rid of inspirational porn altogether?

 

Tip Tuesday

Although I spend a fair amount of time engaged in some fashion in social media I have mastered none of it. In fact, I find it frustrating, meaning social media itself, not the mastery itself.

I have no expertise in it whatsoever.

Instead I find people who are and pick their brains to no end.

I’ve realized I can make better use of my time (and my sanity) if I don’t try to become an expert in everything.

(I may have studied a little too much Plato in college, but it makes this make sense)

A few years ago, I attended the Catholic New Media Conference. I’d like to tell you I did it on purpose but I just got lucky. It was small, reasonably priced, and easy to travel to. I had reached a point where I needed to learn more before I got buried in the noise of the internet.

I was so overwhelmed after one day, but I knew I was in the right place for the right reason, and I knew I wasn’t done learning from this pool of talent.

I went home and did my research, and then I kept tabs on the people that gave talks, the people I remembered seeing, even the people who started following me on Tw!tter for no reason in particular.

At the most recent CNMC I came prepared. I made two mental lists the “need to” and the “want to” list.

Patrick Padley was on the “need to” list. After sending an unknown amount of emails to companies I thought would be a good match for increasing CP awareness and getting no response. I knew I wanted to pick his brain to know what I could do differently, what I could do better.

Maria Johnson was also on the “need to” list. I needed to thank her personally for her help and inspiration. She made my brain light up like a pinball machine at my first CNMC and the lights haven’t dimmed much since.

Lisa Hendy was on the “need to” and “want to” list, for reasons that are too long to list. Let’s just say if you want to see what can happen with a small venture see Catholic Mom

And lest I forget Greg Willits who ended up at the top of my “want to” list after delivering his keynote. You know how there are people that can tell you things you don’t want to hear but when you hear it it doesn’t seem that bad? I never thought I’d thank someone for telling me things I didn’t want to hear.

Basically, my advice for using social media for advocacy is this, do what you’re good at (hopefully it’s something you like too). Seek out the advice of people who are experts in the areas in which you fall short.

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.

Follow Friday

One of the biggest reasons I started writing about Cerebral Palsy is because the internet was lacking when it came to voices of people who had CP.  Thankfully the internet has grown. This is only a small portion of what’s out there now.

10 Tweeters
@LCarterLong
@KateTheMuse
@MaysoonZayid
@CPInspiration
@JohnWQuinn
@ZacharyFenell
@htlcy
@AbilityCatcher
@BirdOnTheStreet
@TimDRose

10 Blogs
CP Shoes
Mama Lewis
Free As Trees
Trousdell Five
Robyn Lambird
The Blessing Counter
Smith’s Holiday Road
Tonia Says
The CP Mommy
Spashionista Report

10 Facebook Pages
CP Teens UK
Reaching For The Stars
Hannah Cockroft
Fit With Cerebral Palsy
Cerebral Palsy Foundation
OM Foundation
Handicap This!
Teen CP
#CPChatNow
Karen Pape

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.

I’ve Learned To C.O.P.E.

I have a love/hate relationship with social media. I wouldn’t have most of the friendships I have without it but at the same time I get overwhelmed trying to keep up with everything that I can look at daily. Plus, I use it for business purposes so things can get tricky.

Pat Padley has a formula that has helped me attempt to keep my head above the metaphorical waters of the internets.

Create
Once
Publish
Everywhere

The idea being use all platforms, since each platform appeals to different demographics, etc., but post the same thing, because why do more work than you need.

I don’t always follow this formula, because each of my platforms does serve a purpose so not every post fits every platform but I try to follow this formula when it fits.

Honestly I don’t have a favorite platform, if I do it changes often enough that it’s hard for me to keep track of. However, I do find some platforms easier to use than others depending on the purpose. I do wish it were easier to post across all platforms so “C.O.P.E. ing” would be easier to accomplish.

I find Tw!tter the most accessible in terms of versatility, meaning I can accomplish what I want from whatever device I happen to have on hand at the moment.

I like the idea behind Inst@gram more than I like using it. I find it frustrating that it’s “mobile only” and I try not to be attached to my mobile device (aka phone) 24/7.

I’ve used Faceb00k the longest but I’m far from their biggest fan, especially in terms of their mobile app.

I don’t use any other social media platforms because frankly 3 is enough, unless we’re counting blogging than 4 is more than enough.

I’ve tried to use G00gle+ for things other than the occasional hangout but I just can’t wrap my brain around it.

I like the opportunities social media has given us as a society but I don’t like the algorisms they employ behind the scenes. It makes me suspicious and weary to engage in anything. I like my timelines chronological. I’d like to go back to the idea that everyone has an equal chance of being seen/heard like when social media was beginning.

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.

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.

Suffering, Cerebral Palsy & The Media

There’s a common, and undying, misconception that everyone with a disability suffers daily and suffers greatly. I don’t know when or how it started but I wish it wouldn’t be such a big focal point. I even took a class on the Catholic understanding of suffering in an effort to understand something about why suffering is such a focus for people.

And I have to tell you I just don’t get it, from the point of the sufferer or the observer of suffering, and I’ve been firmly planted on both sides, sometimes simultaneously.

One of the biggest things that annoys people in the CP community is that almost all press we receive starts with “suffers from Cerebral Palsy” or “has overcome Cerebral Palsy.” Now I can’t speak for everyone, although I’m not the first person to say this, but I do not suffer from Cerebral Palsy.

Yes, there are days when I am in constant pain, but I cannot call that suffering. Pain can be a cause of suffering but I wouldn’t go as far as to say this is the case here.

I’ve heard it said, I’ve also read it and said it, that “A disability doesn’t make someone feel disabled, the fact that no one thought to build a ramp does.”

Just what does that mean exactly?

Simply, or maybe not so, disability often it is not the disability itself that causes suffering. It’s other people’s perception of disability that creates the suffering.

I suffer (and so does the rest of the CP community) when people portray us as suffering. It’s not true for one thing and the fact that it’s not true just feeds into the misconceptions the able-bodied community has of the disability community.

Then there’s the idea that we can overcome Cerebral Palsy. No, Cerebral Palsy is part of who we are. You can’t overcome part of who you are, just like you can’t overcome having a certain hair or eye color. You can cover it up but it’s still there underneath.

The other thing is I don’t want to overcome who I am. Wanting to overcome who I am leads people to think that there’s something wrong with who I am and there isn’t. Granted that’s just my opinion.

I know I complain a lot about Cerebral Palsy not getting enough press so you would think I’d be happy to take what I can get.

But I’d rather the media get their facts straight before putting individuals with Cerebral Palsy into the spotlight.

We get so little attention that when we do it can be frustrating when what’s deemed as “facts” aren’t. We’re getting the attention but it’s not in the best way. Because contrary to what so many people seem to think now not all press is good press.

What I’d like to see is for more articles, videos, news stories, etc. telling the real story of those living with Cerebral Palsy. We’re just like normal able-bodied people achieving our goals and dreams, not suffering, not overcoming in spite of our disability.

Proselytizing & Disability

This isn’t exactly a Catholic topic, but there’s three main reasons I wanted to write about it.

  • I like that the Catholic Church isn’t as into proselytizing as other denominations of Christianity.
  • I don’t think I’d be wrong in assuming most, if not everyone, with a disability has a proselytizing story, not unlike prayer related stories.
  • It’s a topic that needs to be discussed from anther, potential, point of view.

I’ve lost track of the amount of times I’ve been proselytized to. Now I typically listen for 15-20 seconds, if that, plaster on a small smile and nod every once and a while. Then the voice of Charlie Brown’s teacher just comes out of their mouth.

The smile & the nod is just an attempt to avoid becoming Peppermint Patti, which doesn’t always work. Yes, I have almost fallen asleep while people are trying to have a meaningful conversation with me.

I hate to say it (well not really) but it’s one of the reasons why I don’t like striking up a casual conversation with anyone I don’t know in public. I know my wheelchair makes me an “easy target” for a lot of things so if I want to avoid being such an easy target I have to be “less friendly.”

I’ve been proselytized to at the public pool and the state fair, and those are just two of the more memorable ones.

Usually I say very little, if anything in return. How can I when I’m not really paying attention? But there are times when I do.

During a state fair an older women using a wheelchair passed me and when were close enough to each other she tried to take my hand (I don’t do that kind of thing so I keep my hands on my rims and pretend not to notice) and said, “You know, someday you and I won’t need these things……”

I responded with “I like my wheelchair, and who I am,” smiled, and went on with my day (hoping I won’t see her again).

Full disclosure moment: One of my biggest problems with Protestant denominations is the emphasis on proselytizing, particularly towards whoever they deem “weak and vulnerable” (which those with disabilities are usually included).

I’m not going to pretend that everyone has my same take on the subject so I’m going to give you my point of view.

One of the biggest issues I have when people proselytize to me is the constant need to compare. It’s a problem I have anyway but add the proselytizing aspect to it and my brain tries to crawl out of my skull until you’re done with your sales pitch.

Most recently, although it wasn’t the first time, nor will it probably be the last, I was compared to Joni Eareckson Tata. Now I’m not going to say I don’t have anything in common with her but I doubt I have as much as in common with her as people thing or that we share the commonalities that people think.

I’ve been told, multiple times by multiple people, that she would be an ultimate source of inspiration for me. That’s a pretty tall order from someone who doesn’t know me and a pretty big burden to put on someone else who isn’t even directly involved in the conversation, nothing against Joni personally.

Think about what you’re going to say before you say it, like prayer, the saints, and in a way miracles, how you say it is more important than that you say it. Individuals with disabilities have a hard time with certain topics for a variety of reasons, which includes but is not limited to, previous unpleasant encounters.

It’s OK to want to share your faith with others but please get to know someone before you start talking about such personal matters that can run so deep. But if you must say something keep it short and sweet and positive. Telling someone to “Have a good day” can mean much more than anything from the “Do you know Jesus?” category.