On Being An Activist, Not An Inspiration

Typically I write and schedule my posts ahead of time. For someone with some of the worst time management skills on Earth, coupled with ADD, it’s just a better system (and why I can’t manage to post every day without some sort of help).

When the news broke that Stella Young died unexpectedly I changed my plans.

She wrote a letter to her 80 year old self, that people shared all over the place. I read it at my earliest opportunity, which happened to be the night I heard of her death. (I’ll spare you my philosophical and emotional thoughts on that).

Although I never got the chance to know Stella personally I feel a sense of loss with her death. I don’t want to go all, “We few, we happy few, we band of brothers,” but it wouldn’t be the biggest stretch of the imagination since the bonds of the disability community seem to run deeper than the everyday population.

There’s this thing that happens when you’re asked to give a speech, at least if you’re anything like me, you spend more time watching other people give speeches (and thanks to the interwebs this can go nonstop for days on end). You don’t really listen to the speeches either; instead you’re watching their posture, movements, what they do with their hands. Seriously, what to do with my hands always puzzles me.

I really wanted to find wheelchair (or crutches, walker, cane) users giving speeches & how they handled their time in the spotlight. What do they do with their hands? What’s their mic set up? Do they use note cards or have notes on their computer from behind a podium?

And I found Stella.

I watched how she presented herself AND her topic.

She made me laugh, not just because she brought humor to her talk but because there are some experiences that everyone with a physical disability seems to share, and if you don’t laugh about it the inner angry cripple isn’t going to become the outer angry cripple.

She’s also the one who introduced me to inspirational porn.

It’s also nice to see someone else out there who has a similar outlook on life and similar thought process, and has a bigger platform no less.

One of my favorite quotes from Stella is this, “I want to live in a world where we don’t have such low expectations of disabled people that we are congratulated for getting out of bed and remembering our own names in the morning. I want to live in a world where we value genuine achievement for disabled people.”

I don’t like living in a world where working incredibly hard to regain your physical baseline is seen miraculous. It’s not fair to the person with a disability or the one(s) claiming miracle, not to mention a big fat lie.

Stella wouldn’t like it if I ended this by calling her one of my inspirations, so I’m not going to do that. She’s not an inspiration, but she’s shown so many how to advocate and be an activist. That cannot be overlooked.

I read that Stella considered herself to be an atheist ever since she heard that there was only a stairway to heaven. So wherever she is now, if anywhere, I hope it’s universally designed I know many of you out there have no idea who Stella Young is so I wanted to give you a chance to get to know her the same way I did.

17 Things Stella Young Wanted You To Know

How Stella Young Wanted To Be Remembered:’Strong and fierce, not sweet or fragile’

*A similar version of this post was published on December 10, 2014

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World CP Day

Cerebral palsy (CP) is an umbrella term encompassing a group of non-progressive, non-contagious motor conditions that cause physical disability in human development, chiefly in the various areas of body movement.

Cerebral palsy describes a group of permanent disorders of the development of movement and posture, causing activity limitation, that are attributed to nonprogressive disturbances that occurred in the developing fetal or infant brain. The motor disorders of cerebral palsy are often accompanied by disturbances of sensation, perception, cognition, communication, and behavior, by epilepsy, and by secondary musculoskeletal problems.

CP, formerly known as “Cerebral Paralysis,” was first identified by English surgeon William Little in 1860. Little raised the possibility of asphyxia during birth as a chief cause of the disorder. It was not until 1897 that Sigmund Freud, then a neurologist, suggested that a difficult birth was not the cause but rather only a symptom of other effects on fetal development. Research conducted during the 1980s by the National Institute of Neurological Disorders and Stroke (NINDS) suggested that only a small number of cases of CP are caused by lack of oxygen during birth.

Types Of CP:
Ataxic
Athetoid/dyskinetic
Hypotonic
Spastic

All types of cerebral palsy are characterized by abnormal muscle tone, reflexes, or motor development and coordination. There can be joint and bone deformities and contractures (permanently fixed, tight muscles and joints). The classical symptoms are spasticities, spasms, other involuntary movements (e.g. facial gestures), unsteady gait, problems with balance, and/or soft tissue findings consisting largely of decreased muscle mass. Scissor walking (where the knees come in and cross) and toe walking (which can contribute to a gait reminiscent of a marionette) are common among people with CP who are able to walk, but taken on the whole, CP symptomatology is very diverse. The effects of cerebral palsy fall on a continuum of motor dysfunction which may range from slight clumsiness at the mild end of the spectrum to impairments so severe that they render coordinated movement virtually impossible at the other end the spectrum.

CP is not a progressive disorder (meaning the brain damage neither improves nor worsens), but the symptoms can become more severe over time due to subdural damage. A person with the disorder may improve somewhat during childhood if he or she receives extensive care from specialists, but once bones and musculature become more established, orthopedic surgery may be required for fundamental improvement. People who have CP tend to develop arthritis at a younger age than normal because of the pressure placed on joints by excessively toned and stiff muscles.
(information taken from Wikipedia and reorganized/edited by me)

Why am I telling you all of this?

Because there is no cure for CP.

But I have to be honest that’s quite fine with me, most days anyway.

That doesn’t mean there can’t be a collective of sorts. Stats are one thing.

Personal stories are another, and even better.

Which is why I collected all the personal stories I could find and put them in one place.

If you have a CP blog, have one that you like, or just know one, leave a comment with the URL

Grad School: The Last Summer

This summer was bananas, all kinds of emotions going full throttle bananas.

I can’t believe I’m actually writing about this.

I learned during my first summer than students often mark their time by summers, and there’s a certain satisfaction that comes with saying “this is my last summer.”

I’ve watched many of my classmates go through their last summer, each has been different, each having their own positives and negatives. I knew what I wanted to do and what not to do. I wanted to end on a good note and have the best experience possible.

I even consulted people and made a plan to have a full yet enjoyable summer.

Very little of the plan went according to plan, as is usually the case.

This summer went much like last summer in the respect that a lot of my classmates and I had the same classes so we spent plenty of time together over a short period of time (although not really because we started courses around the same time).

One thing people get wrong about distance learning is that it’s isolating. Yes, there is an element of that but, if it’s a small program you’re anything but isolated. In fact, I think there was only one person I didn’t know before class began (and I kept referring to her as “the new person” which is completely false in terms of remaining course load).

The first week was fairly relaxed, compared to previous years, it was the only time I didn’t have a morning class. A luxury I had been wanting for years but the opportunity never came about & I chose to forgo the meal plan again so while people were down at breakfast and/or hurrying off to class I was still in bed indulging in well overdue Netfl!x binging.

And by noon I was bored out of my skull.

I took care of a few things, like tuition, scholarship requirements, etc. It was nice to get all of it out of the way but it didn’t take very long so it was shaping up to be a long week and it was only day one.

I did the majority of my course work before arriving and my first presentation wasn’t until the end of the week so I was able to watch everyone’s and make adjustments (and practice, over and over).

If you follow me on Inst@gram you saw how much detail I put into my presentation, although it may have come off fairly low-key.

The week closed well but I couldn’t help but keep thinking about my presentation. It could have been better, I think, so there was plenty of work to do before I turned in the final project (hell there’s still a lot to do & grades are in).

The weekend was pretty low key considering how much work lay ahead. I think what helped was the fact that we were all in the same boat so if someone was struggling (which I was, I just didn’t know it) there were other people to pick you up (and in my case 3 or 4, I can’t remember).

Pro tip: Make friends with someone who can pack anything (& nearly everything) in a suitcase without

Because my presentations (or really practicum requirements) were scheduled for the beginning of the week it meant that I had a lot to do in the span of less than a week. I wasn’t a big fan but at the same time I liked the idea of being done on Tuesday, because the 2nd week of classes came with a mandatory early wake up & Theological Reflection at night.

This summer was unlike any of my previous summers for many reasons but mainly because there were many group activities outside of class. Meals, for the most part, were together. We saw more of the outside world, together. Whenever someone was going to do something they asked who wanted to come along. In one way, it was how we made the most of our final time together.

This was the summer I couldn’t wait to have, my “final summer.”  It’s something that gets hyped up in one way or another by everyone, even yourself. There are certain rites of passage that you don’t get to have until that “final summer.” What often gets overlooked as the emotions that come along with it, at least for me.

While I’m not done with school yet the experience is certainly coming to a close. The blessings have been given the good byes (even if just temporary) have been said.

It’s time for a new group to start their countdown to their own last summer.

10 Minutes, 10 Hours, 10 Days, 10 Weeks, 10 Months, 10 Years

The memories that pop up on social media seem relentless this time of year.

I don’t mean that in the negative way that it sounds either, but I’m not sure I can really come up with more adequate words.

August is the month I flew to Portland and made my way to Washington State.

August is the month I made my final preparations for a full year of rehabilitation.

August is the month friends got married and others took their first vows, on the same weekend no less.

August is the month I first went Chicago for a week, not knowing that it would become a yearly event.

August is the month friends took their final vows.

August is the month I’m buried under numerous deadlines, and social engagements to juggle on top of that.

It’s so many memories crammed into on month that it’s hard to keep track of how long ago they each were.

Whether they were 10 weeks ago, 10 months ago, or 10 years ago…….

They all seem 10 minutes, 10 hours or just 10 days, away.

It’s getting harder and harder to remember when they all occurred, other than it was August; I’m not sure if that’s a good thing or not.

I’m sure at some point it will all even out, but that’s not the case, at least right now.

For now, I’ll let the memories run together, until others join them.

Why I: Am Not Meant To Be A Catholic Blogger

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

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

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

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

I don’t find God in church.

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

I struggle with modesty.

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

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

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

The pro-life movement.

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

A feeling of lack of understanding.

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

I don’t know the Rosary.

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

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

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

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

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.