Grad School: The 1st Summer After

It’s the first summer of my post-post-grad life. The summer of dreamed of for years has come and is almost over. No, I’m not going back to school, at least not yet. Things haven’t gone how I thought they would. I’d be lying if I didn’t say keeping up this blog is getting harder and hard to do, not because of lack of time, but lack of motivation.

I thought not having school would free my mind, give me the free time I missed, etc.

Lucille Ball was quoted as saying, If you want something done, ask a busy person to do it. The more things you do, the more you can do.”

I think there’s some truth to this, although not the total truth.

I feel like I could get more done in a day then than I can now, even if I can set my own schedule more often these days.

If you follow me on Inst@gram or Tw!tter you can probably guess what I’ve been doing with my self-controlled schedule.

Perhaps getting back into everyday life is more than I bargained for. Perhaps my brain just needs to rejuvenate and heal, yes heal.

Maybe having more to do meant that I had more to write about.

Whatever the reasoning it’s caused me to reevaluate my blogging and social media practices, again.

I’ve been trying to put together my post-post-grad life, because it’s not something that just falls into your lap, unless you’re incredibly lucky, it’s something that needs to be built, and then crafted.

Things have been changing in my life and it only makes sense that other things will follow. It doesn’t matter what I thought the long game would be when I have to take into consideration what the long game looks like it is now, rather than what I wish the long game looked like.

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On Dignity & Disability

I’ve been told that it’s a good idea to set up internet alerts to keep up with the news that may interest me. While I think it’s a good idea and I have come close to doing so on more than one occasion, I’m glad I don’t have any of it. There are plenty of days when I want to pull the plug and throw my computer out without additional influence. Can you image what would happen if articles ended up in my inbox the second they were published? No thanks.

Over the last few weeks there have been a few articles that have grasped my attention and just won’t let go (and raised my blood pressure exponentially).

Please note (and respect) that I will not be linking directly to or mentioning any specific details of these articles. I’m choosing to use my “linking power” wisely.

I’m not expert on dignity but it’s been a recurring topic in my continuous inner dialogue lately. What is it? How does one achieve it? How should you go about protecting it? I think you get the idea.

The issues surrounding dignity or lack thereof and disability are really starting to get to me. I’m not the most diplomatic person (read: at all) & I have a temper, so my first reaction is usually anger and it takes me a little time to get my thoughts out so someone else can know what I’m trying to say and want to listen.

Dignity in regard to disability is not a new frontier. However, it is one that needs exploration by the able-bodied (and those related in any way to someone with a disability). It can be a tricky subject to approach in mixed (ability) company; it probably has something to do with sympathy vs empathy, or other similar topic.

I remember the first article I read that made me question how people saw dignity for people with disabilities. It made me so angry I just sat on my feelings for a while, because I wasn’t “into” being a disability advocate then so throwing my feelings out there would’ve been shocking to everyone. I kept my feeling to myself, mostly, but it’s never left my mind.

I’m pro a lot of things but I draw the line somewhere before preforming medical procedures to stop individuals from growing up, literally, because someone going through puberty and adulthood are more difficult to care for.

It’s a fact of life, disability or no disability. There shouldn’t be a separate set of rules for those with disabilities. That’s the exact opposite of what so many people fight for.

If the same thing were to happen to an able-bodied person masses of people would be up in arms and it wouldn’t even make it in front of an ethics board, never mind be approved by an ethics board.

Let’s not even discuss what would happen if a child were to ask to stay child-sized forever, because I think we can all guess what would happen.

One area I tend to struggle with my thoughts the most is in an educational setting. I’d like inclusion for all, of course, but there are situations when I wonder if it’s really possible. I’m against self-contained classrooms mostly but I’m not completely against them. If you want to reinvent the mold for your child to fit into the mold that’s fine, but not at the expense of other children, that’s not OK. A child needs to be given the best environment to flourish in the long term.

Creating a short-term solution and hoping that it “just might” evolve into a long term plan is not only irresponsible but further proving the long held myth that people with disabilities are handed opportunities because they can’t afford them for themselves.

Let’s not forget about a certain photo controversy that’s become a virtual powder keg of opinions.

To be clear the differences of opinion are with the photo. I haven’t read a single comment from someone with a disability who has a favorable opinion of the photo. At the same time the majority of positive opinions have come from parents (or caregivers etc.) of a child with a disability. While both groups (PwD & parents, etc. of PwD) are part of the disability community each comes to the community with a different point of view.

I will not be talking about the point of view of parents, etc. because I am not a parent and I am not close enough to “the etc.” to be able to speak on it effectively.

Speaking as a person with a disability I can tell you that the photo was an immediate turn off. I’ll often read articles even if the photos turn me off the subject. I’m a visual person so I understand the value of a well-placed visual, whether positive or negative. Sometimes I have to “override” first instinct and give something a chance. However using this particular photo was foul play on the part of journalists and parents.

Just because you’re OK with complete access (and/or are given it) doesn’t mean it’s OK to take advantage of it.

How many pictures have sparked controversy because a parent posted it online? Pictures of able-bodied minors in a diaper or even a questionable outfit are posted every day and someone somewhere always had an unfavorable opinion of it. And if the backlash is big enough social media accounts are suspended.

Why isn’t the same courtesy extended to an older individual who cannot speak for themselves just because a relative or caregiver gives the OK?

And what would happen if someone who could speak for themselves is perfectly fine giving a journalist full access and a similar photo was used? I doubt people would have a similar reaction. In fact I doubt a photographer would even take such a picture.

I’m going to take it one step further (maybe a step too far even). Child predators toll the internet 24/7 looking for images of people, most of them are seemingly innocent images.

People get upset and “cry porn” if a mom posts a picture of a three-year-old proudly wearing her “big girl underwear.” Yet it’s a “beautiful image” to see a disabled 16-year-old wearing nothing but a diaper.

Isn’t this a double standard?

I could probably go on and on with more examples, in fact I know I could, but I’ve said enough, for now.

A friend said things better than I ever could, “because disability is involved, we accept the notion that disability means less-than-human. We must remember that a person is a person, no matter their abilities. Everyone deserves to be presented to the world around us in a manner of dignity and respect.”(source)

*A similar version of this post was written on July 29, 2014

Revisiting: The Roll Call

Since I’ve been musing about the possible death of blogging and the importance of not overstepping boundaries when it comes to storytelling I thought it would be a good idea to revisit (and then repost) the database of Cerebral Palsy related blogs, with a few vlogs thrown in.

It’s worth noting that many of these blogs haven’t been updated in years and are written by people who have family members who have CP, both facts that bring to light my previous points. However, they all have content worth looking at if you’re interested in getting to know a few individuals that make up the CP community.

This same list will be updated and expanded on an as needed basis here.

A Life Less Ordinary

A.J’s Awesome Adventures

A Place To Write Things

A T-Rex Life (Videos)

A T-Rex Life: Cerebral Palsy And Me

About The Small Stuff

Adapted World

Adventures In Mattyland

Amazing Amelia

Amazing Syafiah & Co

An INFJ With CP

And The Wheels Keep Turning

Andersen Family Blog

Ayla’s Rainbow Connection

Better Than Normal

Bird On The Street

Brace Yourself Declan

Brendan’s Life With Cerebral Palsy

Brielle and Me

Bringing The Sunshine

Caleigh’s Corner

Caneable

Cerebral Palsy Baby

Cerebral Palsy Daily Living

Cerebral Palsy Family

Cerebral Palsy Mamma

Cerebral Palsy Soccer

Coley’s Corner

CP Shoes

Cracks In The Pavement

Crip Video Productions

Dealing With My Life With CP

disABLED guy

Do It Myself Blog-Glenda Watson Hyatt

Drake And Lulu

EMDeerx Muse

Endless Jubilee

Finding My Way: Journey Of An Uppity Intellectual Activist Crip

Following Elias

Free As Trees

Gas-Food-Lodging

Hannah’s Adventures of Living Her Dreams

Hanpike

Henry’s Heroes

How Life Happens

I Heart Milo

I Will Skate

In Bloom

In My Eyes: Life With Cerebral Palsy

In The Words Of A Green Giraffe

Insights From The Sidelines

Isla’s Journey

Jake Olver (Videos)

Jentry Holthus (Videos)

John W. Quinn (Videos)

Journey With CP (Videos)

Jude, The Diary Of A Baby and A Stroke

Jump In For James

Kaitlyn’s News- Living A Happy Life With Cerebral Palsy

Katherine Hayward, My Life With Cerebral Palsy

Kelsey Can

Kendall’s Hope

Kristen’s Life With Cerebral Palsy

Lieck Triplets

Life And Family, Steve Wampler Is Living With Cerebral Palsy

Life In Holland

Life With The Loraines

Living My CP Life (videos)

Love That Max

Making My Mark

Mark Henry

Massagermommy

Mattes’s Madness

Micro Preemie Twins: The Story Of Holland & Eden

Miss Charlie

Missy’s CP Journey

My (dis)Abled Life

My Life With CP (Videos)

My Spelling Sucks

Nich Vaughan

No Superhero

Off Balanced

One Day At A Time

Our 3 Little Miracles

Outrageous Fortune

Painting For Hailey

Premeditations: Reflections On Preemie Parenting

Riley’s Smile

Rob J. Quinn

Ryn Tale’s Book Of Days

Sammy’s Walk Through Life

Smith’s Holiday Road

So… How Did You Break Your Leg Then?

Spashionista Report

Speak Up, Sit Down

Special Momma

Stories With Sam

Team Aidan

That Crazy Crippled Chick

The Blessing Counter

The CP Diary

The Deal With Disability

The Fabulous Adventures of a Four-Legged Woman

The Galli-ringo Family

The Girl In The Wheelchair

The Grappler Within

The Nest

The Writer

Three Chocolate Brownies

Tonia Says

Trailblazing With CP

Trousdell Five

Tutti Frutti

Twingle Mommy

Unexpected Lessons

Updates on Lewis Jack

Verses Of Vaughan

Victor’s Smile

View From A Walking Frame

Welcome Blessings

Welcome To Elijahland

Wherever He Leads We’ll Go

Writer In A Wheelchair

Zachary Fenell (Videos)

Telling The Story You Have Ownership Of

During my Q&A in my capstone presentation I was given a piece of feedback that is still sticking to me, like flypaper.

“It would be nice if you incorporated more stories in your website like the ones you just shared with us.”

This wasn’t the 1st time this was suggested to me, so I responded appropriately (or what I felt was) inside I was like this:

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I understand stories need to be told but if they don’t belong to you, you have little, if no right, to tell them.

Although I read it all the time, it makes me uncomfortable when stories are told about someone, a child, sibling, spouse, etc is being told without their consent. I wonder what they would think if they knew?

Mostly I wonder what a child will think about their parent telling everyone about their lives before they ever knew what they were doing.

I understand that stories need to be told, I won’t be a writer if I didn’t, but where’s the line?

I feel like anyone with a keyboard can call themselves a writer these days.

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It sounds great, but what’s the real price tag?

At what point does sharing information become exploitation?

There’s an argument that true journalism is dead. I wonder if blogging has contributed to this. These days it seems like everyone has an agenda, meaning impartiality is gone.

I’m not saying that we shouldn’t tell stories. What I’m saying is that you should tell your story, especially when it comes to blogging. A child, for example, is under your care but when they grow up they’ll have to handle what you’ve said about them, because if it’s on the internet it’s quite possible that it won’t go away.

Tell the stories that you have full ownership of, yours.

Something

It’s been a busy week for me, so busy in fact I thought I might go a week without blogging, because the previous post was written before its actual postdate. So, I have about an hour to come up with something before the rest of my week, weekend included carries me away in its wake.

Oh, course I have next week off, and seemingly all the time in the world. Why does that always happen?

I’ve spent a fair amount of time in the car this week going from place to place, particularly yesterday, so I’ve had plenty of time to think in the midst of my self-imposed craziness.

It’s no secret that I’ve been doing a lot of reading these last few months, but even so the one thing I haven’t been reading is the Bible. There’s no excuse for it, it is sitting on the end table after all, less than a foot from where I sit to write, although I have been known to do a quick “verse check” now and then, thanks to the world wide web.

Although verses are still finding their way into my thoughts, no matter how long it’s been since I’ve had quality Bible time.

Even though I’ve been so busy I’ve been taking time, or rather seizing opportunities, to get out there and make an attempt to step out of my comfort zone. Since having surgery, and even before that, I’ve felt the Lord had given me a special mission. For those of you who have read Sleeping With Bread I’m talking about my sealed orders here.

But is hasn’t been an easy process………
(Is it ever?)

I know I can’t sit and wait for things to happen. But what direction do I go in? What if I go the wrong way? What if I go in the exact opposite direction of where I’m supposed to go?

So I’ve been being intentional and thoughtful of how I spend my free time these days, beginning this week. I’ve been trying to get “me,” for lack of a better word, out there. I’m considering saying “Yes” to things I would typically say “No” to. Just to see what happens. Maybe saying “yes” when I would’ve said “no” will make all the difference.

It’s working out well so far, as far as I can tell anyway.

Here’s to saying “Yes” even when you really don’t want to.

*A similar version of this post was written on May 21, 2010

On Change

I’ve been trying to write something for more than a week. You’ve been there, right?

If you haven’t, lie to me.

May has been a challenging month. It went from being, “If I can just make it though these next few weeks” to “If I can just make it though this month.”

For those of you familiar with the spoon theory; I am out of spoons, almost.

I’m not sure where or when it started. At this point it doesn’t matter much. Life happens.

May (and a portion of April) has involved a lot of change. I have a love/hate relationship with change. It’s nice to break from the usual but the usual is the usual for a reason, because it works.

I’ve been thinking a lot about change. It’s a common topic of my life these days. I use to think I could handle change pretty easily, sure there were rough moments but they were manageable. And it was only one thing happening at once, usually.

These days every change seems to be followed by another, if not preceding another. It’s a lot. When I found myself “escaping” to my day job I discovered my “fill line” for change.

I keep telling friends and family that I feel things changing, and I wonder if they’re for the better, for the worse, or just time for it. My brain has been going through a category phase. It needs to categorize as much as it can as quickly as it can.

The thing that’s bothering me about all of this change, I think, is that 99% isn’t under my control, I chose very little of it. Change is exciting when you choose it or when you choose to accept it. I’ve had to figure out where I fit, if at all, in all of it. It’s not a fun process.

Change has a ripple effect. Even if you’re not the one changing the change can still affect you; hence the reason why I’ve had to figure out where I fit in constantly changing interpersonal dynamics with those around me.

To make matters worse, or at least it felt like it at the time, an opportunity presented itself that I wanted to take. It just wasn’t as easy as I thought it would be.

I had to write an essay. But it just wasn’t just an essay. It had to be a personal statement.

In an effort to lesson my mental anguish at the process people asked if I had something already written that I could just update. Under the advice of a high school teacher I’ve kept everything I’ve ever written, mostly, even notes. So it wasn’t out of the realm of possibility that I had a personal statement somewhere, or something I could turn into one.

I did the math, for filing purposes, at least at first. The last time I wrote an essay, of any kind, was ’07 (ironically April).

A lot has changed since then. I’m not a completely different person than I was back then but a lot has changed. None of those most “recent” essays would do.

Change happens. How you handle it is where the real change(s) seem to occur.

In the meantime, does anyone out there have any extra spoons?

*A similar version of this post was written on May 30, 2013

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.

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

If I Did Not Have Special Needs

Ellen did an If My Child Did Not Have Special Needs list/post. I didn’t think this would be the most fun of ideas, but I did sit and wonder what my list would look like if I did the grown-up version.

 If I Did Not Have Special Needs I would probably freak out at most medical related situations, like most people do. Instead I tend to treat them like social occasions.

If I Did Not Have Special Needs I would be more flexible with my time, money, and any and all other resources. I would probably be much vainer too.

If I Did Not Have Special Needs I would probably treat kids with special needs as abnormal. Instead I see them as normal, like the other kids.

If I Did Not Have Special Needs I wouldn’t look at the other side of the coin. When people complain that they weren’t told something my first response is usually, “Did you ask?” And that’s just one of many situations.

If I Did Not Have Special Needs I’d be at least 5ft 3’, in really great shape, and have a shoe addition. (Riiiight)

If I Did Not Have Special Needs a lot would come easily to me & I would take it all for granted. Like being able to do something crazy, like run a marathon, on a whim.

If I Did Not Have Special Needs I’d let insurance companies get the best of me. I’d also foolishly believe you catch more flies with honey. Instead I’m like a pit bull with pot roast, but I will try being nice on the first attempt.

Since we’re on the topic of insurance……. If I Did Not Have Special Needs I probably wouldn’t have insurance & be O.K. with it.

If I Did Not Have Special Needs I would not be a blogger. I would not be spending my free time writing for who-knows-who. I would not be writing this very post. Instead I’d be a bestselling writer with sales second only to the Bible (even in my non-special needs dreams).

If I Did Not Have Special Needs I would not be a trailblazer. Instead I would be “just like everyone else,” and although that’s what we all aim for, it’s not the way to live your whole life.

If I Did Not Have Special Needs I probably wouldn’t be a role model to many, if any. Being an adult with special needs I’ve found myself in the position of role model for other children (and often their parents).

If I Did Not Have Special Needs I would not know who my real friends are as well as I do. A gift that very few people are privileged to have.

If I Did Not Have Special Needs I would be nothing close to the person I am today.

*A similar version of this post first appeared on an old blog on September 1, 2011

I’m Not An Expert, But I Play One In Life

March is Cerebral Palsy Awareness month, as a person with a disability, which happens to be CP, I feel obligated to do my part in spreading a greater sense of awareness; because although CP is common few people really know about it.

I’m not an expert in CP. I have not studied it in textbooks, read studies, or analyzed people with the disability, from an objective standpoint.

I’ve lived more than three decades with Cerebral Palsy; I’m not an expert, but I play one in life.

Lecture halls and textbooks have their place but there’s something to be said for the value of living something day in and day out without the sterility that can come with formal education.

So, what do I have to tell the world, or at least the internet?

It all depends.

I used to put everything out there, or at least that’s what it felt like, now I pick my spots, just because I don’t put it out there doesn’t mean someone else can’t put it out there, or just because it’s not out there doesn’t mean it has to be out there.

Boundaries, they’re a wonderful thing, when used well.

But boundaries can, and do, change.

Every once and a while I relax the boundaries, and it’s mainly for one reason.

I can talk about Cerebral Palsy as much as I want but there’s only so much writing and talking I can do without some sort of feedback. There’s only so much yelling into a void anyone can do before losing their voice?

I’ve done this before, and I want to do it again.

What do you want to know?

What questions do you have?

What possible myths have you heard?

What do you know about Cerebral Palsy?

What do you wish you knew, or even had the slightest idea about?

I know parents of kids with CP & young adults with CP read my blog. Both groups have questions and opinions (I would too if I were in their place).

I may not have all the answers to every question or myth that there is out there, but I believe I can provide guidance and provide inroads.

I’ll be the first one to tell you that I’m not in expert in Cerebral Palsy, but I do have live experience to draw on, and that’s not something I take lightly.