BADD ’17: In Defense Of The Able-Bodied

I’ve wanted to write this post for a long time, but it’s one of those “tread lightly” things, and that’s not my best skill, so I’ve put it off, but I think today is the day.

I’ve written before on whether or not it’s possible for those with disabilities to be ableist towards others with disabilities. While it’s a divisive topic I think it’s an important one to acknowledge and discuss in certain situations.

As excited as I was to join a swim team I knew I wanted to continue when the season was over, which ended up not being in the cards for a few reasons. I also knew the season was really just a start and I needed to find the next step.

I asked people for advice, people who have been around and faced some of the same challenges, but I didn’t exactly go how I thought.

Before I even made a viable connection, people tried to talk me out of what I had in mind.

It didn’t make sense to me, if the end goal was to create a more inclusive environment what was so bad about my plan?

I showed up to my 1st masters swim practice with extreme caution. I wasn’t sure it was going to work, especially after watching the junior team practice, but I needed to give it a try. I had 1 private session with a coach a few months before and I was still reaping the benefits. If I backed out of a chance at team practices I would regret it.

It was a hard practice but everyone seemed welcoming. I’ve kept a list of goals since I started swimming again. I had been steadily chipped away at them but things stalled, until this practice. I ended up crossing off almost everything else on the list.

Then nearly everyone who encouraged me to seek out other opportunities tried to talk me out of it, even when I didn’t ask for their opinion.

It wasn’t good for me to leave people “who are like me” or “could understand someone like me,” at least according to them.

I understand their concern, at least usually, but what confused me was these comments were coming from people actively working towards more inclusive sports. So, why shouldn’t I join an able-bodied team? Especially if it’s a better fit, in almost every way.

I know there are those out there who feel that I’m betraying “my people” but if the ultimate goal is for people with disabilities to be seen as equals to the able-bodied community so we need to become part of the able-bodied community whenever an ideal situation presents itself.

At least that’s what I think.

I’m not going to say that the change has been seamless. It’s been full of adjustments, not so great practices, and at times downright culture shock.

But I can say without a doubt that I wouldn’t be where I am today if I hadn’t made the change.

And that’s made me think a lot more about inclusion.

When we see a chance for inclusion we should take it, we need to take it. It doesn’t always come with the betrayal of the disability community, and if we keep seeing it that way then we probably should change our approach.

Inclusion isn’t a one-sided issue, we can’t just stand around and wait for people to include us. We can’t just yell, and bitch, and moan about it either, there has to be some meaningful effort on our part, and it doesn’t have to be some grand gesture either.

Sometimes “just” showing up and seeing what could happen is enough.

Blogging Against Disablism Day, May 1st 2017

Why I: Am Not Meant To Be A Catholic Blogger

I’ve had this post in mind since Benedict’s resignation. I don’t think I’m able to write it better now than a few months ago, but if I wait any longer I’m going to forget it altogether.

I found my first Catholic blog by accident. It wasn’t long before I thought I would be a good Catholic blogger too. At the time there weren’t many known Catholic bloggers, in fact many young adult Catholics were being told to stay away from internet Catholicism.

I thought I could be a voice for young adult Catholics like myself. It made perfect sense. The internet didn’t scare me & I had plenty of resources at my disposal (at least then).

However it didn’t take me very long to figure out that I wouldn’t be good at it. I did compare myself to other Catholic bloggers, but that was only part of it. I just wouldn’t be good at it. I’m not meant to be a Jennifer, Arleen, or Chelsea.

I don’t find God in church.

There was a time when I never went to mass at all. It wasn’t doing anything for me, except for filling me with rage & anger. Then there was a time when I went to mass daily. I have to do what works for me when it works for me. I can’t go to mass if I’m not feeling inspired to do so. Mass is a piece of the puzzle that makes up my faith life; it’s not the be all end all.

I struggle with modesty.

 It was a long standing debate between friends and me whether I was dressing modestly. In the end we decided that it was best to agree to disagree. I find wearing a dress to be incredibly uncomfortable, in fact I didn’t own anything that wasn’t pants for a long time. I don’t understand the obsession that modesty automatically means dress & immodest equals wearing a tank top. In wind a dress can blow & expose everything, pants don’t move. Tank tops are more complicated so let’s just leave it at I like to have all my bits and pieces covered.

The Church (or rather churches) isn’t accessible.

It’s true that it’s not accessible for people intellectually but that’s not the type of access I’m talking about here, although all types of access shouldn’t be ignored. Many people with disabilities can’t even get into a church to celebrate mass. It’s true that many churches have a handicapped row at the front of the church and it does provide a great deal of access for those who choose to use it. I however find a downside to it. I jokingly call it the “crippled and lame” section. Everyone wants to feel a part of the community. Putting people upfront, because it’s the only place there’s space, can make them feel like objects on display instead of being part of something. There’s also the issue of ramps & elevators…..

The pro-life movement.

I consider myself to be pro-life personally but on a global stage pro-choice. I think the pro-life movement overshadows many of the other issues the Church should also be taking a stand on. I also feel like there’s a piece of the pro-life puzzle that’s missing. We shouldn’t be ignoring other issues for the sake of one.

A feeling of lack of understanding.

I’m guilty of this as well, so I’m going to attempt to treat lightly. One of the biggest reasons I turned my back on the Church was the lack of understanding (and even the desire to try to understand). People were too focused on trying to heal me and tell me I needed to be a better person. People are different and share and express their faith in different forms, even among Catholics

I don’t know the Rosary.

At one point I’m sure I knew it, but not anymore. Even more shameful, at least to some of you, every time I try to learn I miscount my Hail Marys and/or fall asleep in the process.

I can’t be a good leader if I’m not a good follower.

I can’t tell people how to be a Catholic if I’m figuring it out for myself.

*A similar version of this post was written on May 10, 2013

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

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).

CP Is A Fingerprint

There’s a nice thing that comes with having a blog, you can pretty much put your thoughts out there and let it go. But there are times when people want to engage with you, and it’s great, but also a challenge.

Having a blog about CP is no exception, especially when resources are limited and CP is such a broad diagnosis.

Even if two people with CP have the exact same diagnosis on paper it doesn’t mean that they’re effected the same way, in fact I can almost guarantee that they won’t be effected the same way.

So, when I get asked questions or get presented with other people’s opinion on my care, or the case of others, I ask everyone to take it with a grain of salt.

I don’t have all the answers, but no one else does either, but it’s hard to remember that when you so desperately want answers (or want to give advice).

It’s natural to want to be surrounded in a community of people you have something in common with but when it’s something like Cerebral Palsy it can be hard to find the common ground you’re looking for because at first someone may seem “like you” but when differences start to appear it can be hard to not compare & contrast (and then potentially get bitter).

We are a community, but it can be easy to forget that we’re individuals first.

What Is Cerebral Palsy?

For the past couple of years I’ve devoted my writing efforts during March to Cerebral Palsy.

Why?

Because despite being the most common disability among children very few people know what Cerebral Palsy is. Now for a medical condition that was first studied in the 1860s, (but probably first identified during the time of the Ancient Greeks) the fact that the everyday person probably doesn’t realize that they’ve probably at least seen 1 person with CP during their lifetime is, well, I don’t know what to call it.

Sad?

Disappointing?

Shocking?

Not surprising at all?

All of those, and then some more.

There are people who have heard of it but have more misconceptions than actual facts about what it is and what it isn’t.

And honestly, I wonder if it would be better if some of those people knew nothing at all, because their misconceptions run so deep and are so flawed that it might be better if they (or rather we) started from square one.

So here I go again.

What is Cerebral Palsy (CP) Anyway?

It’ll get into the technical aspects soon but I wanted to start with something simple for today:

keep-calm-its-only-cerebral-palsy

After I get into the basics I’ll get more personal, probably, because I can’t speak for everyone with CP; for two reasons (1) Cerebral Palsy effects each person that has it differently. No two cased of CP are exactly alike. (2) Also I don’t want to pretend I know everything so I can’t in good conscious speak for everyone who has CP. That just wouldn’t be fair to the CP community or everyone wanting to know about CP.

In previous years I’ve taken questions from readers and it’s been overwhelmingly positive so I’ll continue with that tradition, because if it ain’t broke….

If you have any questions, feel free to leave a comment or fill out the contact form. You can even send me an email if that works better for you.

Until then…….

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*A similar version of this post first appeared on an old blog on March 1, 2016

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?

 

Now What?

This is the 3rd time I’m participated in HAWMC. Each year it comes at a less than ideal time and by the end I can’t wait to write the last post. This year is no different. As much as I get out of blogging everyday this time I just need to be able to check this off the list and move onto the next thing.

What is the next thing?

Practically speaking, there’s a paper to write, podcasts to record, and Christmas shopping to finish (which should’ve been finished by now, because I’m one of those people who shops throughout the year to avoid the added stress).

Ideally speaking, I have a project coming soon. Just how soon? It’s at the editor’s but I’ve already seen what may well become the final product. It turns out I’m very bad at providing feedback short of ripping something, anything, to shreds.

Then there’s grad school to finish which includes a capstone that needs writing. I feels like I’m in the middle of a triathlon I couldn’t find the time to train for, after I signed up and paid the entry fee, so I kind of should do it.

All of this pretty much leaves my career up to chance, word of mouth, and pure luck. It’s not that I haven’t wanted to speak and write more in the last year. It just hasn’t happened. I’m trying to see it as a positive, to give me the time to devote to other things without having to decide what to do or overextend myself.

That doesn’t mean that my life as an advocate is going to be put on the back burner. Another degree will add another dimension to my business, to my advocacy work, at least that’s the plan anyway. HAWMC isn’t the end of the line, it’s a stop on a journey to something greater. But like I’ve said already, the month has been long enough. It’s time to move on to the other things I have on the calendar on the way to where I eventually see myself being.

However, I’m available if someone needs me.

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.

About Abandonment

One of my favorite posts from another health advocate comes from Jessica. Although the post deals with illness almost all of it can apply to living with a disability as well, probably because there’s a misconception that disability is similar to being sick.

2016-11-25

Read Jessica’s full post.

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.

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.