Is Blogging Dead?

I started blogging when it wasn’t a popular thing to do. I didn’t really read other blogs, if I did it was because another blogger left a comment on my blog first. It wasn’t until I was out late one night for a cast party when the director confessed that he often spent hours every night reading random blogs, literally random, he rarely read the same blog twice.

It was only a few years later that my bookmarks were full of blogs, which I checked before starting my day, every day. At times it took up so much time that I was almost late to class on multiple occasions.

At some point I stopped reading my laundry list of blogs and moved on. I’m not sure why but it’s how it happened.

However, I knew the power of blogging. So much so that I compiled a list of blogs that were similar to mine in one aspect. Mainly because I wanted other people to be able to find what I wanted to see for years.

Every once and a while I’d check in on a blog or two that I used to visit daily (or even multiple times a day if called for) to catch up on what’s been going on with that individual, or their child, or their family, or some mixture of any of it.

Some have disappeared. Some of their authors and/or their children have even died.

Some haven’t been updated. Some are still around, a few are even thriving, but it’s not the same as it was.

I suppose it’s a good thing, but I wonder what the downsides are.

These days it’s rare that I read any blog on a regular basis.

These days I grab my phone, 99% of the time before I’ve even gotten out of bed and scroll through social media platforms. I scroll so fast I doubt I’m actually reading anything, unless osmosis is indeed possible.

Some of my blogging friends have turned to Inst@gram I feel like that’s become the new blogging in some ways. I miss the blog posts, but I appreciate that Inst@gam is probably a better fit for their lives these days.

One of my biggest issues with social networking platforms is that I can’t compile a list of people in similar life circumstances that I can with blogs, even if I make a list it’s hard to let others know about it in the same way you can with blogs.

It’s difficult to foster the same type of environment on social media platforms as you can with blogs and the opposite is true as well.

And given how the internet & other technologies have evolved over the years I keep coming back to one question:

Is blogging dead?

My first instinct is to say yes. But upon deeper reflection I’m more inclined to say that it’s just not how it was. It’s just evolved.

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Speaking, Again

The last podcast recording I meaningfully took part in was about a year ago. I was feeling that it was time to move on, because podcasting is more work than I had anticipated, even though I basically just show up and talk.

However, the fates had other plans.

I stopped watching Speechless halfway through the season. It wasn’t intentional, but it was a perfect storm that made it pretty easy to stop watching & not feel like I missed anything.

Instead I watched other things, on network TV, cable, and Netfl!x; and noticed a lot of portrayal of disability (and lack thereof, etc.).

Some of it was good, some was great, some was downright horrible. I asked Daniel if he would be interested in recording a podcast on the subject, and he was.

So, we did.

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What do you think about the various portrayals of disability on TV (or media in general? Do you have any favorites? How about aversions?

I Wish I Was A Unicorn

On a recent episode of The Accessible Stall Kyle & Emily talked about employment/unemployment. Naturally this topic hits close to home at the moment, so I gave it a listen, naturally.

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You should give it a listen when you’re done here.

Both Emily and Kyle acknowledge that they’re both in the unique position of being gainfully employed but that’s not the part that stood out to me, although it should be noted that it’s highly unusual for two normal (meaning not really that famous) disabled people to be financially self-sufficient.

They called themselves unicorns.

Then it hit me.

I wish I was a unicorn too.

I want to be a unicorn.

I do have a dream job in mind, several actually. I’d like to achieve my dreams but right now I want to be a unicorn.

I am already a unicorn, in a sense, but I don’t feel like a “full unicorn.” I have no upward mobility in my current job. Some days I feel like I’m just filling a spot until someone else comes along or I leave my position. So, I’m more of a non-unicorn than the actual unicorn I wish I was.

There you have it, I’m still looking for a job. If it happens to be my dream job than that’s a bonus. But more than anything I want to be a unicorn, not because I want to be a unicorn, but because I don’t think anyone should go around wondering or knowing if they are the unicorn of their workplace in the future.

Here I Go Again, I Guess

Remember when I said my future as a podcaster was up in the air?

Well it still is, I think.

Dan and I recorded a podcast mainly discussing the future.

If you listen to it you know that we tackle the quality content vs the content for content sake discussion.

And the time it takes to put a podcast together.

Then there’s the matter of throwing something into the void and hoping someone hears you.

But if nothing comes back to you it becomes like screaming into a void, eventually you get tired.

The thing is I’m not just talking about podcasting either.

I have a blog (which you’re reading).

A career.

A ministry to devote time to.

I love creating content for people but I’ve come to realize that I’m not a content creating machine, at least not in the literal sense.

Like many podcasters who recently took hiatuses, like Sean & Greg & Jennifer, I realized I need to take time for myself and things I enjoy rather than focusing all my attention on what others may want to hear about without actually knowing for sure.

I am not a factory if my heart’s not in it people can tell so I need to focus on quality of content rather than quantity of content.

So, for now, or forever, podcasting will be lower on the priority list (for me anyway).

Things could change however.

Here’s how:
-Send feedback whether it be on the podcast or my blog.
-Send topics, again whether it be on the podcast or my blog. It’s a lot easier to create content if you have a topic you know someone(s) is interested in hearing about.

Speechless For Now, Or For Good

I recently wrapped my 1st stint as a podcaster. It was an interesting experience to say the least. It wasn’t something I ever envisioned doing but I didn’t want to turn down the opportunity.  It was a new challenge. And in all honesty, it was one I wasn’t always up for.

Now that the season is over I’m taking time to evaluate whether I want to do another season. If you listen to the season finale episode you’ll hear me joke about whether you’ll hear me on Special Chronicles in the future.

Honestly, I haven’t made any decision either way at this point.

There’s a lot to consider, now that I know what podcasting really involves.

-I have other projects I’d like to work on.
-Do I have the time for everything?
-Do I have the energy for everything?
-Can I produce enough quality content?
-Do I want to produce more content than I’m already producing?
-Do I have anything left to say that someone hasn’t said or can’t say?
-I went into this venture thinking it would be a temporary gig, although it lasted longer than I thought, that doesn’t mean it wasn’t still meant to be temporary.

And that’s just the short list of thoughts.

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When does one truly know when to step back, move on, or carry on?

I guess we’ll all find out the answer in the fall, at least in this case.

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.

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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.

The Week In Review

The last few weeks have been rough for me on nearly all fronts. I won’t go into the details because recounting all of it would just be too exhausting. Let’s just say I could relate a whole lot to a recent recording of Adventures in Imperfect Living.

I either haven’t been able to get anything done or I haven’t wanted to. What I have could get done is my part and now I’m waiting on someone else. I’ve been in a hole and by the time I realized it I was already buried to my shoulders.

The one thing I could count on to attempt to get out of this funk has been swimming.

Are you surprised at all?

Although I must confess my enthusiasm for the sport has waned in the past few months, which should give you a clue as to how buried within myself I was.

I began to make a few small changes.

Things I could control, without question.

I got into the pool and followed that black line up and down, and back again.

I took what I could control one step further and tried what I wanted to do, what I thought I could do.

It’s been fun, even if it hasn’t always worked.

I admit that staring at a black line for extended periods of time sounds boring but I’ve found empowerment in it. I always have. These past few weeks have just proven that for me.

I don’t have to think about what I must do. Often I can’t. I’m occupied with my stroke count or looking at the line at the bottom of the pool.

Or I’m not think at all.

It’s easy to get lost in your own rhythm, literally.

It’s as simple or as complicated as you make it.

Just as people wish life would be.

Digging yourself out of a hole doesn’t make for a good week, at least for me it doesn’t, but having something to look forward to makes the days a little easier to work through.

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.

World CP Day

Every year I struggle when World CP Day comes along, but to be clear I have no problem with World CP Day in terms of playing a big part in the achievement of a goal. I want more people to know about Cerebral Palsy so being against World CP Day would be counterproductive.

I do find it to be counterproductive, not to mention confusing, that World CP is in the fall and Cerebral Palsy Awareness Month is in March. The CP community needs more community, having a “CP Day” & “CP Month” feels like being forced to choose between friends (or overkill having to commemorate both).

So what is one to do?

Jump on every awareness bandwagon that comes by, at least for now.

So what do I write when I’m hesitant to write?

A lot of CP Vloggers have done a “CP Tag.” Starting a Vlog or even just a few videos was something I was considering. But when you consider my limited track record with videos is roughly 1 hour of recording for 1 minute of usable footage any recording just isn’t in the cards right now, which may seem contradictory given my most recent venture. So you’re just going to have to settle for the written version.

CP Tag
Tag Questions

1) What kind of CP do you have?
I have Spastic Diplegia Cerebral Palsy, which means my CP effects my lower limbs, aka legs.

2) How did you get CP?
I’m not exactly sure; I don’t know if anyone could be, because if we knew the cause wouldn’t there be a cure? I was born prematurely (32 weeks) so there’s a good chance that that played a role.

3) How did you feel about a growing up?
Truthfully I can’t remember. Does that make me old? I knew I was different from everyone else growing up, but the words “Cerebral Palsy” were rarely mentioned. There were times when I didn’t like it and there were times when I didn’t mind it at all, usually it revolved around what class I was being pulled out of for in-school PT and/or OT. My parents (and the rest of my family) tried to keep my life as normal as possible so I wasn’t given much of a chance to feel anything other than normal.

4) How has CP impacted your life (good and bad)?
I can’t really answer this question since I have nothing to compare to on a personal level.

However, CP impacted my life negatively because I was teased endlessly throughout school, particularly middle school. What I didn’t realize then, but I now do, is that I was the easiest to pick on because I was the one who was “most different.” I was perceived to be the “weakest” of the herd, therefore the easiest target. It sucked, but I’ve tried to put that behind me, and what I haven’t I’ve tried to use for positive purposes.

CP has impacted my life for the good because I’ve been given opportunities I wouldn’t have if I didn’t have CP. I wouldn’t have the same career, and certainly not the same vocation.

5) Do you ever think about your life without Cerebral Palsy?
I do, but not in the way people might think. When I find myself in certain situations, like after giving a talk or attending a conference, I catch myself thinking, I wouldn’t be here if I didn’t have Cerebral Palsy, so that’s pretty cool.

6) How was schooling with Cerebral Palsy?
I’ve had horrible and amazing experiences in terms of schooling with Cerebral Palsy, bullying aside. I was in a special education classroom in pre-school (ages 3-4) and then moved to mainstream classrooms (with an aide) for elementary school. I ditched the aide around 1st or 2nd grade (I told her to get lost). I was in public school until 5th grade. I was in private (Catholic) school from 5th-8th grade and received no services or accommodations during that time.

I attended public high school with no additional services or accommodations, other than gym class, because the school is so small; in fact, I often ignored what the administration put in place for me and did my own thing with no objections (and the accommodation for gym was more for my safety related to size rather than ability.

I attended 1 year of public university with one accommodation (a room on a lower floor), which was a big fail, but none of that was on my part what so ever. My last 3 years were spent at a private university with the same housing accommodation and accommodations for note taking. I didn’t think I needed any accommodations at all but thanks to a great relationship with the staff at the Disability Student Services offices I was willing to give their suggestions a try and my college experience was so much better for it.

Now I attend a private post-grad institution through an online program (although I am required to be on campus for part of the summer). I have no accommodations and I don’t foresee needing any in the future (but you never know). Thankfully the school is incredibly small so the community is incredibly accessible and supportive when/if needed by anyone.

7) How has your disability changed throughout your life?
Cerebral Palsy itself does not change over time (or so the people with medical degrees say). However, it does change how it affects your life, at least from my experience.

People with CP tend to age more quickly than our able-bodied counterparts since our muscles work harder (I’ve heard somewhere around 3-5 times harder). We’re also more likely to develop arthritis or osteopenia.

I’ve had less surgery as an adult than I did as a kid but I think that’s mainly because there aren’t a lot of studies on the effectiveness of surgery on older individuals with CP. Also a lot of the surgery I had as a kid was to help direct or redirect the growth process. Let’s not forget that medicine/science has developed a lot in my lifetime so that also plays a role I’m sure.

I can’t exactly say when things changed, nor can I explain how each time. But I can tell you that (for me) when some things get worse other things get better. It doesn’t make any sense but that’s just how things are for me.

8) How will things change for people with disabilities?
I can answer this in two ways, the way I’d like things to change or the way I think things are going.

I think things are changing for people with disabilities, obviously, but I wonder if things are going in a positive (or “right”) direction. The disability community is getting more exposure and being included in mainstream society. There’s rarely a day that goes by that I don’t see an able-bodied person sharing a disability related news item on social media. It’s exposure but is it always good exposure?

For example, the “in disability” right now seems to be Down’s syndrome (particularly during Fashion Week) but every article about someone with DS seems to have the same tone. They’re “beautiful,” “always smiling” and have a “bubbly personality,” but not much else.

What does that say to other people, in particular children, with other disabilities? That they’re not beautiful enough? Or that their personalities aren’t as “bubbly” so people won’t give them the time of day?

Cerebral Palsy isn’t much different when it comes to getting media attention. We all seem to “suffer,” “overcome obstacles.” We sometimes are classified as having a “disease,” which couldn’t be more wrong.

All stories attempt to highlight individuals, however so many of them say nearly the same thing.

Yes, things are changing for people with disabilities and a lot of the change is positive but I fear that much of it is venturing into “inspirational porn” territory and that isn’t the kind of change the disability community is looking for, at least I’m not.

9) Do you believe in God? Does that help you deal with having CP?
Yes I do. I wouldn’t say my belief in God helps me deal with having CP directly, but it does play a role in how I live and see my life (much like having CP does)

10) If there was a pill or cure for CP would you take it?
No.

*A similar version of this post was written on October 7, 2015