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.

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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.

BADD ’16: Ablesim In Social Media

Today is Blogging Against Disablism Day. Blogging Against Disablism Day

I remember one of the first things I learned about the internet was don’t click on banner ads because most of them were viruses that could destroy your computer. As a result, it takes a lot to get me to even glance at an ad anywhere on the internet.

Every couple of weeks something happens to my computer, or rather the internet.
It thinks I speak Spanish.

I don’t know where or rather how it comes to this conclusion. I took Spanish for years in school but I can only remember a handful of words, none of which can be put together to form a coherent sentence.

I know people are worried that the data miners will find out too much about them from their social media habits. I have the same concerns; however, I’d need the internet to get something remotely right before I get that concerned.

In addition to thinking I speak Spanish the internet also thinks I use catheters (among other things) and want to sue people over the fact that I’m disabled.

That last one has made me change my social media engagement practices.

I realized that not paying attention to ads I am being complacent in what people assume I feel about being disabled. Yes, it would be nice to have more money at my disposal but that would mean stating that I think it’s wrong that I have a disability.

I’m sure whatever algorithms used pick up on the fact that I write about disability, and not being human don’t go much further than that. Still nearly 100% of the ads I see portray a negative view of disability.

Last week I started to not only look at the ads in my news feeds but do something about them too.

I’ve alternated between reporting “this ad is not relevant to me” and “this ad is offensive.”

Because 99% of them are not relevant to me, but they could be relevant to someone else.

I want to label all of them offensive because they’re offensive to me, but I admit I may be slightly oversensitive given that I’ve gone to paying attention to virtually none of it to all of it in the span of a day.

The internet is a powerful tool, it provides so much good to everyone who has access to it, but it also provides a lot of bad (and/or useless) information. Anyone can say anything they want and they can get away with it.

What does this mean for the disability community?

It means that ableism can come from anywhere, obviously.

It’s a good thing really. Not that ableism is ever a good thing but it gives advocates, like myself, talking points we might not have thought of if it wasn’t for things that came across our path that we didn’t agree with.

For every 1 ableist item we see we should come up with at least 2 disability items to highlight the positives of having a disability. The disability community may not have the money but we have the numbers, and more are joining the community every day.

For example, (and this is just one of the many examples obviously) the parents of the newly diagnosed child should be able to sit down at their computer and be able to find the good things about being disabled alongside some of the harsh realities. Because being disabled isn’t all doom and gloom, sadness and pity, or worthlessness or being less than.

Would I like ableism to be a thing of the past? Absolutely, but the world is full of ignorant people so, although it may seem like a pipedream now that doesn’t mean it has to be one in the future.

I’ll keep doing my part in small ways, big ways, and every way in-between.

Now about the internet thinking I can speak Spanish thing………

Blogging Against Disablism Day, May 1st 2016

Tales From A Late Adopter

You know how some people claim to be early adopters?

Well, I’m not, except for maybe blogging, and F@cebook, and neither of those were totally my decision.

My 1st computer was over 7 years old when I decided to get a new one. It was supposed to have Wi-Fi capability when I bought it but I don’t think it really did.

I’m still on my 1st smart phone, which needed to be replaced years ago, and didn’t even know what a podcast was until after attending my 1st CNMC (an ignorance I have since more than made up for). Oh and I still try and build websites in HTML whenever I can get away with it.

And it takes me roughly and hour to make a minute long video that I can just barely stomach watching.

My 2nd computer had Wi-Fi capability but I didn’t actually get Wi-Fi for a few years afterwards, and even then I didn’t use it unless I was in a Wi-Fi only location.

If I’m anything, I’m a reluctant adopter.

So when my computer, my 2nd one, died a quick, yet horrible, death a few weeks ago I just about when bat crap crazy. (1) I’ve never had a computer completely die on me before and (2) I had class starting in a matter of weeks, I had to make a decision, and fast.

It’s really really rare that I wish I was in a relationship but this was one of those times, if for no other reason than I’d have someone capable of making such decisions for me and then getting me settled without causing me stress.

Thankfully I had everything backed up, which I’ve never done before but won’t ever skip that step again, so that was one thing I didn’t have to worry about. But in my rush I didn’t do my usual vetting process.

And while I was waiting for news on my computer I went so over my data limit on my phone that I couldn’t even add any additional data to my plan. I had a big “no” symbol in my notifications for days.

I hadn’t kept up on the software upgrades on my tablet for so long that it took days to get that taken care of before I could even use it effectively.

My new computer didn’t come with office already installed. I realized that in the store but knew I had two product codes at home, so why bother. Well the joke’s on me because now that I need one I can’t find either one of them anywhere.

It also doesn’t have a disk (or rather CD) drive so when I went to look for one I got a little freaked out. How would I install anything?

Also the power button is on the side instead of near the keyboard. Once I found it I wondered what team of people thought it would be a great idea to put a power button so easily accessible to anything. I’ve lost track of the number of times I’ve turned it off without meaning to.

Although I’m a reluctant adopter I hesitate to call in any outside help for anything. I don’t read directions and although I typically purchase additional tech support I rarely, if ever, call them.

I made more calls to set up this computer than I have ever. It makes me feel defeated in a way, because I hate asking for help, especially when it’s something many people easily master. But stress and a tight timeline won out, at least this time.

One of the biggest reasons why I am a late adopter is because I don’t like having to work out the little bugs that come with the 1st generation of so many products. So I usually wait and keep my ear to the ground before making any major purchase.

Until my motherboard dies, then it’s time to run to the store before having a nervous breakdown, because who can live without a computer these days?

I went with the “upgraded” version of what use to be very much the other half of my brain, which is lying closed up in an old dusty box like a technological casket, because I didn’t have the time, or the patience to figure out something new (and I still spend hours on the phone with various tech support people).

Am I happy with it? No. But it probably has more to do with a rushed purchase rather than an unsatisfactory product.

Now my next task? To upgrade my phone and maybe use the gm@il account I created for myself a few months ago.

I need to do something before all of my devices are on the verge of another technological breakdown, and maybe do a better job at keeping up with the rest of the planet.

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.

Why You Shouldn’t Pray For Me

I believe in prayer. However public prayer tends to make me anxious, yes even during mass. Yes, me a budding Catholic theologian has issues with prayer (there’s a reason why I’m a “practicing” Catholic).

I’m pretty sure anyone with a disability, particularly a visible one, has had at least one uncomfortable public prayer experience that they’ll never forget, although they’d really really really like to.

Every time I hear or read about an awkward prayer encounter (much like the one below) I cringe, like Pavlov’s dog and that stupid bell.

Emily Sc_Sh

There are a few issues here. If someone says they don’t need help, they don’t need help so BACK OFF. It does not matter how well-meaning you are.

Now, to the actual issue I’d like to address here: Praying for people you don’t know in public. The sentiment is nice, and appreciated, but no (at least as a general rule).

If you feel the need to pray for someone out loud and in a public area, which I have no idea why you would do so, but anyway, ask the person you want to pray for if they wouldn’t mind.

Do not ask anyone else, even if the person cannot speak they can communicate, and will make their wishes known. If they say “no” respect that.

Not everyone shares the same faith and may find it offensive if you just go up to them and start praying for them (I am one of those people, just for the record).

If they say “yes” ask them if there’s anything they’d like your prayers for. I can almost guarantee that you’ll get an answer you weren’t expecting. Most people feel the need to pray for the full healing of a person with a disability. However it isn’t what we always want, especially if that person was born with their disability (like myself).

We are not broken. If you believe in God then why is it so unbelievable that God would create people “fearfully and wonderfully made” just as He made you?

So if you really feel compelled to pray for someone try to find some common ground.

But as a general rule I’m still going to say that you should not approach someone in public and pray for them, and keep your hands to yourself. You never know what potential damage you could be doing to another person, either physically, mentally, or both.

Please don’t pray for me but if you really have to, do it in private. I do not need to know you’re praying for me or why. I’m just going about my day, just like you are.

The Doctors I Won’t Forget

Sarah, of Seriously, Sarah?, wrote about the doctor she won’t forget and how that one person effects how she navigates being a professional patient. Her words hit so close to home that I shared her post on my Facebook page with some of my own thoughts.

I don’t just have one doctor I won’t forget and the same goes for their assistants and office staff. I’ve had enough horrible and incredible experiences to be able to write several books on the topics.

I remember in ’08 when I was looking for someone who could locate (never mind treat) the source of my chronic pain. I went to one doctor who sent me to another. I loved them both and would have stayed under their care if I had more of a support system in place at the time.

Knowing I needed a stronger support system I set out to find new doctors like the ones who opened the door and showed me how badly I needed help, even if it wasn’t going to be coming from them (no matter how much I wanted them to).

I hit the ground running (figuratively) and had my 1st second opinion less than 24 hours after moving across the country. I should’ve taken my lost luggage as a sign that things wouldn’t go well, but this guy came so highly recommended (and I was too jet-lagged) I didn’t even bother with second thoughts.

I should’ve had second thoughts. I should have run screaming out of the office when I was asked (more like forced) to pick the one part of my body that hurt that hurt the most by the radiology technician (because every joint below my belly button wasn’t a good enough answer).

He wasn’t the guy for me. I went home crushed and waited for my formerly lost luggage to arrive from Alabama, while wondering what the hell I was going to do now.

I went to another doctor that someone had heard about. He was great and I would’ve given him the green light but I was “too old” for him, as in “I’d really love to help you, but you’re just too old for me. I don’t see anyone over 15.”

I was 24.

I sat in his office for hours and everyone, except me knew this wasn’t going to go anywhere. I get that private practice is a business just like any other but you’d think someone would’ve said that there was no point even making an appointment.

But because I did like him, and I respected his opinion (because of his background) I asked if he knew of anyone that might be a good fit for what I needed. He told me to go see one of the top doctors in the state. I thanked him for his time (although I wondered if it was really a waste for both of us) and left.

I didn’t go see the doctor he recommended, because I had already seen him. I knew him well. I knew he wasn’t for me.

So I turned to the internet. Surely there had to one person on the entire planet willing to treat a young adult with Cerebral Palsy. They just had to be found, and I was going to do it.

I made more phone calls and a few more appointments. So many that I thought about seeing if there was a world record for the most 2nd opinions and if I was even close to that number (because everyone needs goals, no matter how strange some are).

Then I found a doctor who found one for me, because he was thousands of miles away (but at that point distance didn’t matter) and he knew of someone closer. I took the information to make an appointment but also laid the groundwork to potentially see the guy I found thanks to the World Wide Web, just in case.

I made an appointment not expecting anything to come from it. Why would I after all the appointments I had sat through and how they all ended?

I went thought the appointment, just like I had all the others. It was different but I knew not to get my hopes up. Then he left to review some things and came back to talk to me.

He wasn’t the right person for me either. But he did something every doctor before him didn’t do.

He told me what he saw and then admitted that he could do the job but he knew someone who could do a better job. He’d already called him and he’d agreed to see me.

And the rest, as they say, is history.

I learned a lot from that process but the most important thing I learned is that you don’t get to choose to be a professional patient but if you’re going to be one you have to develop a tough skin because you’re going to carry a few disappointments with you and those are going to affect how you interact with any other medical professional forever. No, I am not being dramatic, at all.

I can’t forget those doctors and I won’t let myself either. As horrible of a journey it was to get quality care they each had a part in shaping the person, and advocate, I am today. Although I won’t go so far as to thank them for it.

What doctors need to realize is that even though someone might be “just another patient” to them they’re not “just another doctor” to that patient, especially when you have a chronic condition with chronic misconceptions.