Of Ice & Pies

I admire what the Ice Bucket Challenge has done to bring awareness to ALS. However, I was completely over seeing videos take over my feeds within a matter of minutes.

I’d don’t have objections to “fundraising stunts,” I really don’t. Anyone who has ever been involved in soliciting donations knows anything that can get money (and attention) is good, almost.

I know funds from ALS research are at an all-time high, even after the hype of the Ice Bucket Challenge has long died down. I’m not going to try and tell you that I have a problem with that, because I don’t (you’d have to be a certifiable loon to have a problem with raising money for underfunded research).

However, the whole thing seems so backwards to me.

The object is to NOT want to pour ice water over your head. Therefore, you donate money.

Your F@cebook feed SHOULDN’T have filled up with videos of people dumping ice all over themselves.

Right?

Well apparently not.

There’s also the issue of ALS awareness, as in, what ALS actually is.

It, like CP, is greatly misunderstood.

(What is it about neuro –muscular conditions? It feels like “misunderstanding” is part of the conditions themselves.)

While I’m not the biggest fan of disability simulations on the whole I think any fundraising “stunt” should bring awareness to the actual condition. ALS does not make you cold as ice/ice water. It does however rob a person of any and all muscle usage.

I should also tell you that the (F)JV that’s still alive and well inside me has a real problem with wasting water, especially when areas of the country are experiencing severe drought. It’s probably not as drastic as one of those “cutting off the nose to spite the face” deals, but I think you get where I’m going with this, if not just think about it for a while.

I have watched (and posted) few ice bucket challenge videos (or relevant posts) so I’m not entirely blame free here. So watch Father Kyle Sanders’ video & read Maria Johnson’s post if you want to know what I consider “cream of the crop” of all this mess.

I’ve heard rumblings of wanting to do “ice bucket challenges” for other illnesses/conditions, even now. While it’s tempting to “strike while the iron is hot” there’s also the danger of “fundraising fatigue,” not to mention lacking originality and creativity.

Speaking of striking while the iron is hot, there was another “fundraising stunt” going around the interwebs not long after the ice bucket challenge. I’m not that familiar with it so you’re going to have to cut me some slack if I get some of the details wrong.

It involves CP funding & pie.

As I understand it you’re “tagged” and you have to donate $10 to CP research and hit yourself in the face with a pie within 24 hours, if you don’t you donate $100.

It gets points for originality, thereby partially, avoiding “funding fatigue,” but I can’t say I’m all “gung ho” for this either.

(F)JV me isn’t too happy about the waiting of food thing. People in the world are starving, and you’re throwing food in your face? Not too cool.

I also come from a family who holds pie in the highest regard. My grandmother made apple pie that’s the stuff of legends, literally. She died when I was a toddler so I never got a chance to taste it for myself, or if I did I don’t remember it. I’m sure Grandma wouldn’t be too crazy about her favorite grandchild participating in any event that involves pie, unless you’re going to eat it.

Although I have to confess, I wouldn’t mind if my social media feeds had a few “pie in the face videos,” if for no other reason than to be proven wrong.

As much as I hate seeing pie be wasted, I would love to see people trying to bring awareness and funds to CP; because as much as I don’t want to cure CP I can’t deny that treatments and assistance for those who need it just isn’t there (speaking from experience).

I  saw less than 5 pie videos appear on my feeds (I saw more than that, but indirectly, not through original posts or shares). I won’t lie; I wish CP would become the “next big thing” to support, even if it’s just for the day, because sometimes life gets lonely when people aren’t giving you the time of day (especially if you’re an adult).

Throwing a pie in your face doesn’t tell you anything about what it’s like to live with CP either. If you want to know what it’s like to have CP ask someone who has CP, while every case of CP is unique to the individual, you’ll get an idea.

So what’s the point of all of this seemingly senseless rambling?

Save your pie for dessert & your ice water and buckets for summertime fun, putting out actual fires, or gardening.

Get out the checkbook (or debit card) and give your money, or better yet your companionship

*A similar version of this post was written on September 19 & 24, 2014

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).

Holidays & Disability

I hate shopping. I don’t see the point of it. I can’t think of anything I’d rather do less than go to the mall, for example. I wasn’t always this way however. I used to look forward to shopping, no matter what occasion.

Now it’s just another pain in my ass.

It’s funny how I cling to online shopping when I used to resist it so much.

There’s a reason why I shop for Christmas gifts throughout the year, and it’s not for the bargains (although that would be a bonus).

I’ve been nearly finished with my shopping for months now. I just have to get a few more gifts and I’m done (hopefully by the time you read this I will be done).

This year came with an unexpected hiccup.

I went online to make my purchase. I tried more than once and asked others to try too (in the event of human error). No success.

I called the store, as in the brick and mortar building.

They told me I couldn’t place an order through their website, any order, at all.

So one wonders why bother having a website in the first place?

I asked if I could order my gift over the phone (which I understand is the most insecure way to place an order).

“Well how would you get your order.”

I could’ve explained to her that I don’t drive so getting to the store isn’t as easy as ordering online. But that’s beside the point I was trying to make by calling the store, not to mention I didn’t want to drop that card unless absolutely necessary, which isn’t, but I did ask myself that at first.

I’ll stick with the reliable family fallback gift giving tradition. It’s not my 1st choice but I have to do it with another gift anyway so what’s one more?

I can hear you asking, What’s the point of this post if she already had a solution in her back pocket?

Not everyone has a backup plan.

The holidays are stressful for everyone without accessibility issues. E-Commerce can easily be seen as a luxury we take for granted but for many it’s a gateway to the world at large, not unlike social media.

Therefore, if you have a website that includes eCommerce of any sort please make sure it works, and if it hasn’t worked for any length of time fix it and let people know that it is up and running again. You may not see any large benefits from online shopping but you’ll get more than if you have nothing at all, and even worse if you have it but it doesn’t work (in my opinion).

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.

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.

#SayTheWord

Language & disability is a hard thing to navigate there’s no right thing to say, or right way to discuss it, that will make everyone happy.

I have varying points of view on the subject myself.

However, there’s one aspect disability language I do have a firm view on and I don’t see it changing anytime soon, if ever.

Disability is not a bad word.

Somehow it became a bad word, a word people avoid using whenever possible, even if it means coming up with terms like “special powers,” “differently abled,” or “physically challenged,” which for the record bother me far more than the word “disability” ever has and probably ever will.

One of the blessings of my degree program is the community that comes with it. We aren’t a bunch of people sitting behind computers interacting with each other, basically we are, but there’s a community aspect that I don’t think you get with other online degree programs.

One of my classmates in particular is involved in special needs ministry and had plans on discussing things for a while but never got around to it until I appointed myself the “good bye committee” since I totally sucked at being the “social director.” It just goes to show you should never appoint an introvert a “social director” without their OK.

We talked in the dark hallway, literally, for a while.

She wanted to know what was so bad about “special needs.” I pointed out that my needs were not any more special than most people’s. Also the feeling that I have that “special needs” has a shelf life and creates an awkward situation in terms of self-advocacy.

If you’re 3 and say you have “special needs” people will probably have a clue as to what you mean or they’ll at least be understanding on some level.

If you’re 33 and say you have “special needs” people will probably think something completely different, and along the lines of “diva,” “high maintenance,” and difficult to deal with.

She understood my point after that, but wasn’t ready to embrace the word “disability,” because it’s a bad word.

I pointed out that people, largely people without disabilities themselves, made it a bad word. It wouldn’t be a bad word if so many people didn’t insist on treating it as such, however it still states the truth regardless of personal feelings.

I read a tweet recently that puts things nicely:

Not long after this conversation with my classmate I noted #SayTheWord on social media. While I can’t say I agree with everything that’s been attached to the hashtag (but can anyone say that about any hashtag?) I do think it’s about time we have the conversation.

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

Illness & Cerebral Palsy

Contrary to popular belief many people with Cerebral Palsy do live healthy lives. However, we are not immune to the everyday illnesses that effect everyone else. When we do get sick it can be a challenge, as I was reminded thanks to Tw!tter.

 

I can’t speak for everyone but what floors me about getting sick and having Cerebral Palsy is managing all the symptoms of both.

Spasticity needs to be kept in check and do the ill effects of a cold.

The medications to manage both are not compatible, at least not in my case.

So what are you to do?

I have to choose the bigger battle hoping that it won’t turn into a full-blown war.

Sleep is the biggest help for me when it comes to getting over a cold. However, it’s hard to sleep with spastic muscles on any given day.

Also illness or pain (and a host of other things) can make spasticity worse. Again, quite the conundrum.

Usually I opt for the medications to rid myself of whatever temporally illness has taken hold of my body, because I have a history of colds turning into something bigger and harder to get rid of, if I don’t nip it in the butt ASAP.

I then try and hunker down as much as possible keeping outings to a minimum, and ride things out.

It takes roughly 7-10 days for a cold to run its course. It takes just as long for my spasticity to get back to its “normal” level.

So you can say it takes two to two and a half weeks to get over a cold and its aftermath.

Having a cold can suck for anybody. Having a cold and CP can knock you on your ass, sometimes literally if a sneeze and a spasm occur at the same time or within close proximity to each other.

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.