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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#ILoveMyDisability

There was a time when I’d spend my nights reading blogs, but these days I’m more likely to read threads of hashtags.

#SayTheWord & #StopAbleism2015 are two that kept me up late at night scrolling though people’s thoughts. #ILoveMyDisability is just the latest one.

I thought I’d share a few of my favorites, in no particular order, for no particular reason:

 

Maybe I’m Not An Expert

With March coming to a close so goes my blogging blitz. It never ends up how I think it’s going to and this year was no exception.

I feel like this year was different than the others, for a few reasons, less facts, more stories, for one thing, or is that two?

There were topics I wanted to write about but never got around to or have already written about. When I came up short I dove into my archives, probably more than I wanted to, but it worked. I think?

I’ll get to more stories later on, possibly when the timing is better.

One thing that kept getting my attention this year was the focus on children and the desire to treat, if not cure Cerebral Palsy as soon as possible.

This isn’t new by any means, but it seems to be gaining more attention for whatever reason.

In a way my focus this past month has been more personal because it’s how I’ve grown into adulthood and the different phases of life that people, CP or no CP, find themselves in.

Not every aspect of life comes with statistics, and even those that do come with outliers.

So, for now, and probably in the future, I leave you with more stories than statistics because you can find statistics somewhere else.

Life as an adult with CP is an oddity, a misconception which I brush up against every day, so although Cerebral Palsy Awareness month is over that doesn’t mean my efforts are over, at least not completely.

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All Cerebral Palsy related posts

Disability & Athleticism

At the beginning of December I was sitting on the edge of the warmup pool debating my cooldown, it’s something I don’t enjoy, if we’re being honest. The warmup/cooldown area at meets is worse than a highway during rush hour which makes my dislike even stronger. The internet memes don’t lie. I literally have to talk myself into the water and keep telling myself to stay in for the good of my body, especially after 1 relay, 4 individual events, and a long ride home.

Before I dropped into the water, my preferred method of entry, I struck up a conversation with another swimmer. I didn’t know her at all (and I still don’t) but our conversation will probably stick with me for a long time (and will make me think again about using the warm down area).

She congratulated the meet organizers on including swimmers like myself in the event, even after I pointed out that it was in the rules that “swimmers like myself” be included in such events, because one must be willing to be an educational moment at a moment’s notice. She then went on to compliment me on how brave I was for being willing to overcome my obstacles and compete regardless.

At that point I just smiled, smirked really, and dropped into the water. There was nothing more I could’ve said at that time to change her prospective (and I don’t think I wanted to put forth the effort at that point either).

Last month I watched a video of various Paralympians discussing various misconceptions about para-athletes and it reminded me of that day in the warm up area.

 

Having a disability, especially Cerebral Palsy in my case, does not mean someone cannot be an athlete.

I work just as hard as my teammates, sometimes harder (according to them anyway), to achieve my goals.

I may be a person with a disability, but I am also an athlete with a disability. Someday I’d like people, who I don’t know, to think of me as an athlete before thinking about my disability first.

 

People, Not A Project

Although I did my capstone project on persons with disabilities it was to prove that people with disabilities aren’t a project for the Church to do but rather people who could contribute to projects within the Church’s purview. While I was concentrating on the Catholic Church in particular it isn’t a uniquely “Catholic problem.”

 

It seems like a simple problem with a simple fix. However, it’s more layered than that.

Buildings aren’t accessible, the most obvious reason, but not the only reason.

Sometimes people are led to believe that they don’t have anyone who has a disability that attends their church, that is not true. There’s at least one person, and there are many more who wish to belong to your church but don’t for obvious (and not so obvious) reasons.

Decades of inspiration porn is another reason, it’s so engrained in the culture of so many churches that people can’t help themselves for wanting to put someone with a disability on a pedestal. “People with disabilities are more united with the sufferings of Christ,” “God chose them to be different to show us the beauty of life,” and such.

One might think it’s nice to be thought of in such high regard but at its core it separates those with disabilities from the able bodied.

If the goal is equality than the “special projects” and the pedestals within our churches need to be put away and everyone needs to look for ways to start the path to inclusion, because it won’t happen overnight.

I wish more people would recognize this problem within all churches. We’re people who want to work alongside people to complete a project, not the project itself.

Money For Nothing & Jobs For Free

Job searching isn’t fun. In fact, looking for a job should count as a job, speaking as someone who’s in the thick of it yet again. It can be even more daunting if you’re disabled, especially if you know the statistics surrounding employment/unemployment of the disabled. You want to be one that defies the statistics, not become in included in the statistics.

I’ve done everything I can think of at various points of time in job searching. I’ve gone it alone. I’ve networked. I’ve sought employment help from disability related organizations. I’ve read nearly every article I’ve come across. Every avenue has come with a different level of success (or failure) which I won’t go into, because it could basically be a book in itself.

The one thing everyone, oddly, seems to come to an agreement on is the value of volunteering. As someone who started their resume with various volunteer positions I’d be a hypocrite if I said they didn’t have some value. However you can’t pay bills with volunteer positions alone, and there are times when they become exploitive (especially for minority populations).

 

I don’t mind taking a free gig, but I won’t make a habit of it (and I don’t think I’m in the minority on this one). There also needs to be a self-determined payoff in order for me to take on a gig for free, but that’s up to me and no one else.

I have turned down more engagements than I’ve accepted because there isn’t some sort of return. I know it probably sounds selfish to people, but time is valuable, no matter your circumstances. I wish more people would recognize that no matter their own circumstances, but especially those of any minority.

Everyone has their own priorities as to what’s acceptable or not, but I don’t think we can solely blame organizations for treating people like marketing props. People with disabilities in particular need to take some ownership over it as well.

If you want to volunteer that’s fine but know that it may not get you where you think, no matter what you’ve been promised. There’s a reason why the saying, “why buy the cow when you can get the milk for free,” caught on and still applies to many situations today. Why would anyone pay for something they can get for free?

If you want to get compensated for whatever service (read: expertise) you can provide then you should make that clear, along with what you must have verses what you are willing to negotiate on. It’s OK to walk away. It’s not OK to be taken advantage of, no matter how positive and convincing people can be.

Everyone needs to recognize their value and stick to it if they want anyone else to see that they have value. However, there’s also the possible fact that if you pass up an opportunity because of lack of compensation someone else won’t pass up the opportunity. I don’t say that in any other way than to make people aware that it can and does happen.

I say that persons with disabilities are also partly to blame because so many of us fall for the idea that we have no other options than to take on work for free.

It is not true.

More importantly, it isn’t fair.

We can’t complain that we aren’t being treated as equals if we act like we are equals.

I think there’s also a misconception that everyone with a disability gets money from the government therefore they can afford to take on free labor without economic pressure. This is not true. Not to mention that getting government assistance doesn’t mean you can take any job for added income, if you make too much money you lose your assistance. It’s a catch 22 that no one likes (or wants to be in).

We don’t get money for “nothing” so we shouldn’t take jobs for “free.”

People with disabilities, especially those with Cerebral Palsy, are not props. We are people. We shouldn’t feel obligated to take labor for free, for any reason. Organizations need to stop making those offers and the disability community should stop taking them.

 

Sugar & Spice & Not Always Nice

Because Cerebral Palsy is seen as a “kids condition” and people think physically disabled also means mentally disabled it’s not uncommon for people to talk to me “below my grade level,” so to speak. It’s something I’m used to dealing with but a lot of my (able-bodied) friends aren’t and it’s interesting to see their reactions.

I often say that I don’t like people, mainly because I hate when people talk to me like I’m less of a person. I honestly don’t mind talking to people but when it’s all inspiration porn and/or questions I’d prefer you move along (and I’m not the only one who feels that way).

Here’s another thing you may not know about people with disabilities we tend to be though of as nice, until we open our mouths and say something not so “nice” then we’re (usually) labeled as “mean,” whether or not it actually is, is another matter altogether. It doesn’t stop there either, if one of us is “mean” than there is a misconception that we’re all “mean” or even worse, “bitter” because we’re disabled.

So, there is social pressure for some persons with disabilities to speak well on behalf of the disability community. It’s not the type of pressure that tends to make people perform well, like butterflies on opening night. It’s the kind of pressure that makes you second guess everything you said for days afterwards.

Is it uncalled for? Yes. But it’s a reality.

I’ve often wondered if we should stop putting ourselves through the mental hoops of whether or not “we’re representing the community well” and just be ourselves. Then would able-bodied people see disabled people as more human? Like actual humans, as in, we’re not all binaries. We can have a range of emotions and still be ourselves, we’re not nice all of the time, just like we’re not mean or bitter all of the time.

Just like most other people on this planet.

What people forget, or maybe they don’t want to know, is that people with disabilities are more alike in terms of personalities but we have this added pressure to put on a public face for any number of reasons, one of them being the all too certain possibility of being peppered with questions about anything and everything about our lives.

Imagine having to be on guard for that anytime you leave the house.

It’s exhausting.

My able-bodied friends have been noticing it for a while and they even get annoyed by it. I think because they see me as a person rather than some sort of figurehead who’s open to giving something possibly similar to a stump speech or a press briefing whenever the time fits.

We’re not all sugar and spice and everything nice every point of the day, because we’re people.

Why I: Don’t Suggest Giving Up Social Media For Lent

There are certain things I can count on as Lent approaches. Without a doubt, “What are you giving up for Lent?” is the most popular question to ask and/or be asked.

Now that social media has become such an important part of our lives it’s natural to consider whether or not to give it up for 40 days. I have several friends who engage in this practice, problem is most of them don’t use social media that much anyway. So is it really that sacrificial or are they really getting any benefit from it?

A point worth considering, but not the one I wanted to make right now.

As I write this there’s a snowstorm outside (I’m a write ahead & schedule blogging type). In fact at one point it was snowing so hard that it was snowing sideways. Thus my plans for the day have been canceled and I’m attempting to stay occupied indoors. In a way it’s going to make the point of this post much more poignant, at least I hope so.

The internet, and social media, has opened up everyone’s world. What I don’t think a lot of people realize is just how much it’s opened up the world for those with disabilities.

I wouldn’t be friends with many people if it weren’t for the internet, or at least I wouldn’t be as good of friends with people if things didn’t start on the internet. Let’s just say as an introvert with a disability it’s nice to get the “getting to know you” stuff out of the way when you only get to see people in person a few times in your entire life.

I can’t forget to mention Sara. If there’s anyone who taught me that just because you have physical limits doesn’t mean you can’t create solid friendships and an intentional community. Our friendship may have been short but it left me forever changed.

I don’t suggest giving up social media for Lent for one quasi-simple reason:

You may be part of someone’s community, and it may be the only community they have access to (especially in the winter months).

Giving up your social media routine for 40 days may seem like a good idea and in some ways it can be beneficial but if you do consider who you’ll be leaving behind for 40 days.

Here are some thoughts to consider:

How much can happen in 40 days?

Also consider your group of friends, do they also give something(s) up for Lent?

Do you all give up the same thing for Lent? If so, do you still have that same sense of community because you have other ways of keeping in contact or are you able to see each other in person?

Do you have one friend (or maybe more) that seems uncomfortable with your plan for a 40 day social media fast?

Have you ever stopped and really considered why someone is resistant to give up social media (especially if you “only” know them virtually)?

Lenten sacrifices are meant to make you a better person, but not at the expense of other people. If your sacrifice is harmful to someone else than are you really working towards a greater communion with the Body of Christ?

Alternatives to consider:

Cut back on your social media practices. Check in once a day or once a week.

Post the same thing on all of your social media accounts (idea borrowed from Pat Padley FYI).

Keep community connected through email or text, or an old fashioned phone call.

Make your intentions known early on, as in before today, so if any of your friends have reservations or objections you can engage in thoughtful conversation.

Have a way to contact you on your social media profiles and make it easy to find. Have you ever received an “out of office reply” with a contact email or number included? Like that.

I’m not saying that you absolutely shouldn’t give up social media for Lent.

I’m not God, Jesus, or the Holy Spirit so I can’t say such things with absolute conviction. But I wish people wouldn’t make the decision as easily as they seem to. Virtual community isn’t the same as in person community but it’s still a community that needs nurturing, attention, and people to take part in it.

*A similar version of this post first appeared on an old blog on February 10, 2016

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

PwDs Are People Too

For some reason people with disabilities (PwDs) are often seen as less than human or in some way super human, and this is just one of the many binaries we get put into. It’s frustrating, but at the same time a fact of life that we have to deal with, no matter the disability.

Just because I have CP doesn’t mean I don’t deal with the same things “normal” people do.

I get up and I go to work every day, just like everyone else.

I go to work and I make a life for myself, just like everyone else.

I’m making a life for myself, it may not look like I thought it would but I make it work, just like everyone else.

I’m making it work, sometimes because I don’t have any other choice, just like everyone else.

I make choices every day to get one step closer to my dreams and goals, just like everyone else.

I redirect my focus when my choices don’t get me one step closer to my dreams and goals, just like everyone else.

I make plans for what I think my life will look like in 5, or 10, or 15, years, just like everyone else.

I get mad when things don’t go according to the plan I had in my head, just like everyone else.

I lay in bed almost every night and think through my day, just like everyone else.

As I think though my day I think about tomorrow, and the tomorrow after that, just like everyone else.

As I think about my tomorrows I fill them with my dreams and hope that one day they will become reality, just like everyone else.

Next time you think a person with a disability is just so much different than you are think about what you think about every day. There’s a good chance that person with a disability is having at least half of the same thoughts you are that very same day.