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.


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.

Why I: Keep “It” A Secret

Now that I’ve admitted to you that I’ve tried to keep my Cerebral Palsy a secret on a number of occasions I feel as though I should tell you why, or at least provide an example.

Author John W. Quinn who has made no secret about the fact that he kept his CP a secret to serve in the Navy also has thoughts on the subject worth considering.

I can tell you that the number of people who keep their disability a secret is a lot higher than any of us would like to admit (or realize). As much as we like to say, “The truth shall set you free,” there’s also the equally popular, “freedom isn’t fee,” however I can’t think of one instance where I’ve heard these pearls of wisdom follow each other.

I’m not a fan of keeping secrets but there are times when I have. I’ve kept the fact that I have Cerebral Palsy a secret, but that also depends on what you consider a secret.

I don’t go around broadcasting the fact that I have CP in everyday life. There’s no real reason to. If I feel that I need to tell someone than I do, but it’s not a decision I come to lightly.

There have been times when I’ve had to tell people that I have a disability because not telling them would be more off-putting, but I try to keep it as “light” a topic as possible.

By all accounts most of the time my judgments on “to tell or not to tell” are correct.

“At first glance, I didn’t notice anything different about her. Her legs looked a bit skinny but I figured she was just naturally thin.”*

Those words come from a former housemate’s paper on Culture & Disability, in which I am the primary subject. Are you impressed?

My first thought after reading it? Wasn’t I wearing pants that day? If I was, I’m glad I don’t have those pants anymore. I, like I believe most people with CP do, wear pants to cover up the brace I wear on my right side, which back then was heavier & more obvious than the one I currently wear.

My former housemate goes on to say the following,

“……after a few minutes, we decided to rendezvous with the rest of our future house to walk around the grounds and to get to know each other. Without hesitation, she took hold of my arm and we slowly made our way out into the field. I soon realized that my year ahead would be much different than what I had previously imagined”*

I will tell you that I did hesitate, at least in my head, when I took hold of her arm. My housemates didn’t know I had CP, and I didn’t want them to know, at least not at day one, minute one. The people I flew to Portland with just knew I used a wheelchair, but that I wasn’t paralyzed (Even that admission came after I made a comment about hoping there wouldn’t be any sunrise hikes during the week and one of my traveling companions offered to carry me, not realizing my displease with the idea was with the sunrise part, not the lack of ability).

The only person that I knew knew was the person who interviewed me, because I felt that he needed to know; I had no idea if he had told his coworkers (although I suspected he did). I took her arm because the alternative seemed like the “worst” choice. We were in the woods in Oregon. The grounds were unfamiliar. I was also stepping off a porch stair with no railing. The alternative would have been to risk falling and then having to come clean right then and there. Can you imagine if I had done that AND actually hurt myself? Not the best way to prove you’re just like your peers.

Don’t misunderstand me here. I’m not ashamed of the fact that I have CP. I’ve just lived long enough to see what the power of the label does. I do not tell people directly that I have CP unless they directly ask me, “What is your disability (or diagnosis)?” I’ve had friends (and/or coworkers) for years and they still don’t know that I have Cerebral Palsy. And that’s OK with me.

I am not hiding it, at least in my opinion. If people want to know they can ask. Can you imagine starting a new job and telling everyone that you had blond hair? That’s how I view my CP, if it’s not going to have a direct effect on something, there’s no need to bring it up. Not everyone agrees with my approach but that’s more their problem than mine, in my opinion.

Let’s not forget the automatic lowering of expectations when you tell someone that you have Cerebral Palsy. They automatically assume you “can’t” more than you “can,” when it’s not always true.

Keeping a secret can be a good thing, at the beginning. Everyone should be given a chance to show what they can do before looking at what they can’t do. In fact I’ve had one employer in particular consider my disability as an asset, once we had a chance to get to know each other. (There should be more employers like her in the world, for sure)

The only place I’m completely open about any of it is online, specifically my blog. Why? Because as much as this is my blog this isn’t just about me, it’s about joining a community I’m part of that can’t be found in my daily life, the parents of CP kids &  teenagers with CP, and let’s not forget other adults with CP like myself.

After the paper was finished my former housemate (& friend, let’s not forget that part) asked me to give it my seal of approval. I thought it would be more of light reading material. I mean, honestly, what can someone learn in one class that I don’t know after living 20+ years as a person with a disability in society?

Apparently I’ve adopted a “passing” behavior.

“This view is essentially taking the concept of ‘normal’ and applying it to a personal, constructed, and designated self. A disabled person, who adopts this ‘passing’ view, perceives herself to fit into society’s conception of ‘normality’. She acts as if all is ‘normal’ and ‘hides’ her disability acting as if it was not even there. For the able-bodied person, ‘passing’ behavior also occurs, manifesting itself by not acknowledging a person with a disability as such. This view has its merit in the sense that not all eyes are focused on the disabled person enabling her to ‘blend in’ and effectively feel ‘normal’ herself.”*

 Basically, I keep “it” a secret because it’s not one for me.

*Quotes taken from “Understanding Disability Through My Roommate’s Empty Wheelchair: A Social Narrative”

*A similar version of this post was published previously on June 26, 2013