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:

inside-out-riley-eye-roll

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.

giphy

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.

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I Wish I Was A Unicorn

On a recent episode of The Accessible Stall Kyle & Emily talked about employment/unemployment. Naturally this topic hits close to home at the moment, so I gave it a listen, naturally.

2018-04-25

You should give it a listen when you’re done here.

Both Emily and Kyle acknowledge that they’re both in the unique position of being gainfully employed but that’s not the part that stood out to me, although it should be noted that it’s highly unusual for two normal (meaning not really that famous) disabled people to be financially self-sufficient.

They called themselves unicorns.

Then it hit me.

I wish I was a unicorn too.

I want to be a unicorn.

I do have a dream job in mind, several actually. I’d like to achieve my dreams but right now I want to be a unicorn.

I am already a unicorn, in a sense, but I don’t feel like a “full unicorn.” I have no upward mobility in my current job. Some days I feel like I’m just filling a spot until someone else comes along or I leave my position. So, I’m more of a non-unicorn than the actual unicorn I wish I was.

There you have it, I’m still looking for a job. If it happens to be my dream job than that’s a bonus. But more than anything I want to be a unicorn, not because I want to be a unicorn, but because I don’t think anyone should go around wondering or knowing if they are the unicorn of their workplace in the future.

#ILoveMyDisability

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

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

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

 

To Successfully Succeed

Confession: I can’t believe I haven’t written about this before. If I have and someone knows where the post is, would you be kind enough to post the link in the comments section. I’m not that great at virtual organizing so even if I did write something I can’t find it.

 Katy asked,
“How do you define success?”

 My answer to this question has very little to do with the fact that I have Cerebral Palsy, but I’m sure it colors my answer to some extent. I hope my answer gives you more insight into the fact that people with Cerebral Palsy are more like those without Cerebral Palsy than they are different.

This is question that’s like, “Describe your ideal summer vacation,” the answer changes depending on where you are in life. At 5 your ideal summer vacation is going to D!sney World. At 25 you’re just hoping you’ll be able to afford a summer vacation (we won’t go into how I feel about summer vacations these days).

If you asked the pre-college me & new college student me I would define success as being famous and having everything that goes along with it, or at least all the good parts you can think of (not the bad parts).

If you asked my recent college graduate self what my goals were she’d tell you she just wanted to finish the final projects and graduate. I never wanted college to end but I wanted to workload to end. I guess I’ve been a sucker for community longer than I thought.

These days my definition of success has changed a lot. I don’t want to be rich or famous. Nor will I feel unsuccessful if neither of those things happens, especially since that’s not how I chose to define myself anymore.

These days success comes in a variety of different packages.

A work day that involves minimal paperwork and I’ve reached daily goals I’ve set for myself as well as reaching the staff wide goals? Success. Making positive strides to live my word for 2013? Success. Networking to further my business? Success. Being able to pay my bills and have my insurance pay what they’ve promised? Success.

Things seem simpler now, not to mention more depressing now that I’ve written it, but it’s not really. My priorities have changed. It happens with most people, I’m guessing. It would be awesome to be able to travel more or take more “time off” but it’s not in the cards, at least in the recent future.

In terms of concrete things that I would like to be successful at, I would love for my business to do well enough that I’d be able to quit my day job and still be able to support myself. It would be nice to be able to be in a healthy relationship and maybe have a family, but right now I’m not planning anything other than being able to take care of myself. I’d really like to be one of the few small business success stories out there (Inquire if you dare!)

On the first day of classes every semester at least one of my friends would write, “I will do my best to successfully succeed,” it’s been something of a manta ever since. There are days when success is smaller than others, but it’s still success. What I really want is to succeed successfully throughout my life, meaning I want to do well without causing harm to anyone else, self-included.

*A similar version of this post was written on March 20, 2013

Summer Shedding

My summer has been full, as usual (but more on that later). My room is full of files of stuff that just reinforces my fullness (and lack of organization). But there were 3 shirts in particular that just kept sticking out to me, and recently I’ve had enough.

By the end of the day I ended up getting rid of nearly half of my clothing & shoes, starting to dispose of old prescription medication, and cleaning out my inbox.

I felt better that the deed was finally done but the piles seem to have reappeared, or maybe these are just the piles under the piles.

I’m sure you’ve heard of spring cleaning but this is more like a summer shedding.

I started with the three shirts and by the end of the day there was a mountain of clothing and shoes at the top of the stairs, and some of my drawers still can’t close easily.

For a long time I was worried about getting rid of a lot of things all at once because I had be told, and multiple times, that if someone gets rid of the majority of their belongings at once it’s a sign that the person is contemplating suicide. (I recognize the flaws in this logic upon hindsight, and current trends of minimalism)

Although I’ve gotten rid of a lot of stuff I still plan on doing it again, and soon, sort of a “round 2,” in case I changed my mind on something(s).

Truth be told there’s a lot of stuff I would like to rid myself of but I can’t, at least not anytime soon.

As much as I was dreading getting rid of so much stuff at once I felt much better about it once I got started. I did get sentimental about things but I was able to get past most of that and see the bigger picture.

Not to mention wonder why on Earth I saved so much stuff. What was my reasoning for it, at one point in time?

I kept finding myself jealous of people who have had to move multiple times in their lifetime.

I’ve been fortunate to be able to have a “home base” my whole life so even when I have moved I haven’t had to worry about taking everything with me (or worry about having somewhere to put it all when it came back).

What’s that they say about the grass being greener?

I don’t think much of my life will change from this experience, other than the fact that I’ll probably do deep cleanings more frequently, but I’m close to embarking on the next step of my life. I can’t have a bunch of “stuff” to leave behind if the opportunity presents itself.

Acknowledging Your Personal Puzzle

There are a fair number of analogies of what it’s like to live with a disability, I find some more accurate than others, but countless people disagree with me, which is why there are so many analogies.

There’s also something to be said for basic language around disability, person first, identity first, whatever.

There’s so much to be said about so many topics that divide the disability community but I think I’m starting to find a common thread in all of them.

The path to self-acceptance or one’s own disability.

While I sometimes forget I have Cerebral Palsy, it took me a while to accept the fact that I had Cerebral Palsy, and that it did in fact inform every aspect of my life.

Once I figured that out I thought my life would get easier, at least somewhat, mentally, but it’s not really like that. It can actually be hard to be conscious of how your disability is integrated into your everyday life, especially if you find yourself thrust into the world of activism.

At what point do you highlight your disability, especially if it isn’t visually obvious?

How do you identify as disabled?

To what extent do you bring attention to your disability?

The Cerebral Palsy community is an interesting one, for various reasons, but not limited to how much a person allows CP to be part of their life. It’s always a piece of the puzzle, but the size of the piece is the question.

Some get to make the choice, others don’t, to some extent.

Making the conscious decision to embrace it, and all the opportunities that come your way because of it is a completely personal decision.

As someone who didn’t embrace their disability until their 20s I wonder just way I waited so long. I’ve gone back in my head wondering what and/or when I would’ve done something differently multiple times and I can’t come up with and I can’t come up with something, anything, that I would willingly change.

I guess that’s one of the pieces of my own puzzle.

An Ode To Sweet Caroline

Almost a year ago I (finally) met my new comrade, named Caroline.

Caroline

Yes, my wheelchair has a name.

You honestly didn’t think I’d let a CP Awareness month go by without a post about wheelchairs, did you?

I came across a vlog recently that sums up some of how I feel about wheelchairs, and the choice to use them.

I don’t know why people have such strong feelings, that they feel need sharing, about something that should be a personal decision. For me, a wheelchair isn’t a hindrance. Instead its independence.  Part of the reason why I gave my chair a name is to make it (or should I say her?) more approachable. A wheelchair isn’t a symbol of loss, it’s a symbol of modification.

Owning It

After all my thinking I’ve come to a realization.

I think.

And it wasn’t even a result of all the thinking.

Instead a statement from the oddest of places.

“I can’t believe I get to live in this body”

You could practically hear my brain scream “THAT’S IT.”

I can’t believe I get to live in this body.

Not

I can’t believe I have to live in this body.

Which is pretty common statement when you have CP, because if your body doesn’t always do what you want it to do it’s not always your favorite thing and you resent it every once and a while. It’s a part of poor body image that no one ever considers; your image is poor because your body is often at times, well, poor.

Anyway.

It’s not that I had a poor self-image, other than the teenage years and whose self-image is great at that time anyway, but there were times I wished things were different. Mainly why I wasn’t naturally gifted at most things that interested me. I didn’t want to work as hard as I had to to do anything, which included working out.

I knew what I had to do to maintain function. I’d been told it countless times. I didn’t listen. I didn’t want to. I didn’t care. I wasn’t like all the other people I’d been told about. I was different.

I was in denial.
(Am I saying that I spend 20+ years denying that I have CP? Probably, yeah.)

Then I had my wake up call.

And rolled myself off to fix my mess.

Part one was surgeons.

Part two was all me.

And I thought I knew how it was all going to go.

I may talk a big game but I’m still in the early stages of figuring this all out.

I thought I’d recover from surgery, just like I have from all of my other surgeries, and return to some sort of status quo I’d been living with, and hope I’d have a good chunk of time before I had to repeat the pattern.

Because that’s how CP works.

WRONG.

I felt (and still do) so different with my new hips. I have my good (when I could tell my jeans wouldn’t fit) and bad days (when my jeans didn’t fit) with them. At first it was difficult to adjust to them. My brain recognized the correction but often couldn’t get it together to work with it. Even though it was/can still be frustrating it’s amazing.

I’ve come to a level of acceptance that makes every day fun in some aspect.
”Let’s see if I can do this.”

Some days I do.
Sometimes it takes more work.

It’s O.K.
It’s me.

I’m still in shock that this body is mine.

It’s really cool.

Work with what you have & own it.

Keep raising the bar.

You’ll keep surprising yourself.

*A similar version of this post first appeared on an old blog on February 25, 2011

Why I: Don’t Feel Obliged To Advocate

A tweet came to my attention recently that I feel I should address.

However, I must issue a warning that it hit a nerve (or more like stomped on it) for me.  It might even have ventured into “trigger warning” territory with me but you’d have to check with Mac & Katherine on that one to be absolutely sure.

Now it’s an honest question and if I wasn’t part of the CP community in the way I am now, if I were a parent instead (for example), I might have the same question.

As someone who has Cerebral Palsy and is pretty high functioning I’m probably going to get some kind of backlash for my answer, but might get some sort of support too.

In short, I do not feel an obligation to reach out to those who are more severely effected by CP.

Now if we’re talking about reaching out in terms of forming friendships with those who are more severely affected; I’ve felt like people tried to force the issue when I was younger whereas it’s virtually nonexistent now. I don’t think you should be friends with someone just because you share the same disability. For me it would be like everyone with brown eyes being friends. More goes into a friendship than one commonality.

If we’re talking about reaching out in terms of community advocacy, my answer is still no, but longer.

We are one community but we don’t act like it, more importantly (from my point of view) we aren’t treated as one community.

The way I see it we’re 3 major parts of 1 community, and each part has an element of self-involvement, which is its biggest asset but it’s also the biggest obstacle for greater unity in the CP community.

In case you’re wondering, the 3 major parts (again according to me) are:
1) Parents of kids with CP
2) Parents of adults (who can’t advocate for themselves) with CP
3) People with CP

There’s a reason why I listed them in the order that I did with CP often receive the least amount of support (based on my own experience).

I’m sure you’re heard the saying, “secure your own oxygen mask before assisting someone else.”

My whole life I’ve not been what someone or an organization was looking for:
-I couldn’t get a wheelchair as a child because I could walk.
-I couldn’t try out for any age group swim team because I was disabled.
-I couldn’t receive intensive post-operative physical therapy (ordered by my physician) because I wasn’t disabled enough.
-I can’t learn to drive from anyone other than someone appointed by the state because I’m too disabled.
-I can’t receive job searching assistance because I’m not disabled enough.
-I can’t qualify for assistance grants because I can work.
-I don’t receive the most basic medical care because I have a disability & I’m considered too old.

I was in my 20s before I realized help wasn’t going to come and find me, like it seems to do for countless other people. I had to go find it and even finding help doesn’t mean that I’m going to get help. It’s always been a running joke that I’ve never really fit into a mold or set of rules, but this was real life and not a joke.

I don’t feel obligated to reach out to those who are more severely affected by CP because there are more resources out there for them. Also I can’t advocate for everyone in the CP community because it is so diverse. I stick to what I know best, but if that ends up helping more of the CP community than great.

I need to put on my own oxygen mask before I can help anyone else.

Swimming Half-Naked

I was getting ready to head out to the pool deck. I’ve got a routine that I follow so I don’t forget anything & be quick as possible. However I was having trouble putting my cap on, nothing unusual other than the fact that I’ve been able to put it on flawlessly since June (which I attribute to a flawless haircut by the woman who cuts my dad’s hair).

When I took it off to try putting it on again I noticed it had ripped. I hoped it was a small enough rip that I could still use it. I keep a second (sometimes 3rd of 4th) of everything that could break or rip easily, or be forgotten, in my swim bag at all times.

Everything except a spare cap and the rip was too big to swim with (you can see a picture on Inst@gram), even if I could manage to get it on my head.

“Well I might as well swim naked.”
(I have since been informed that the above statement could be classified as overkill)

I’ve swam with a cap since my first summer at Girl Scout camp; which is so long I can’t even remember how old I was when I went to Girl Scout Camp for the first time. Wearing a cap was a way to identify swimmers by ability and keep copious amounts of hair out of the pool filter.

I started keeping my caps from camp to use during the year. It wasn’t for fashion or style but practicality. It kept my hair out of my face.

I could swim better when I wasn’t trying to see through my hair to get to the wall, or moving my hair out of my eyes once I reached the wall. My goggles didn’t slide all over my head either. (#CurlyHairProblems)

One of the main reasons why I dislike open water swimming is because I hate swimming through and/or around seaweed so I really dislike swimming through my own hair.

I was never the fastest swimmer in the pool, not even close, that’s not a title I’ll ever hold in my lifetime, most likely anyway. But a cap enabled/enables me to have one less thing to worry about and have a chance at swimming faster, even if it was/is just a slight difference.

I thought, for a split second, to just pack up and go home until the sporting supply store opened so I could buy a cap and come back later. But I knew I was being dramatic, and the pool was practically empty, so I put on my metaphorical big girl pants and slid into the pool.

And swam naked.

Was it the big tragedy I imagined in my head? No.

In fact it reminded me how far (and how anal) I’ve come as a swimmer. I remember struggling through lessons for so many reasons, which included but were not limited to, feeling self-conscious both cosmetically and physically.

Do I wish I had a spare cap? Absolutely.

But not because I’m self-conscious, at least not in the same way I used to be, but that’s beside the point, maybe.

I started wearing a swim cap begrudgingly, because it “outed me.” It pointed out that I wasn’t nearly as good as almost everyone else in the pool. I kept and keep wearing a cap, even when I don’t have to, because I realized it has helped me become better at something I truly enjoy. So being without something as simple becomes a big deal.

Isn’t it strange the little things that can toy with us mentally?

After swimming umpteenth laps, and probably freaking out yet another lifeguard for some unknown, and probably unreasonable, reason, I headed to the store to buy at least one new cap (because fool me once shame on you, fool me twice shame on me).

I only found one cap, in white, again not ideal, but this one will be harder to get over.

Anyone care to place a bet on how long it takes for my hair to turn the inside brown?