When I Grew Up

I don’t think I can come up with the full list of things I wanted to be when I grew up. So obviously none of the have panned out. However, I’m still waiting to “feel grown up,” never mind actually be grown up, so something could pan out eventually.

There was that time that my high school guidance counselor assumed that I would become a nurse because my mother’s a nurse. My mother then asked the guidance counselor if she had ever even met me before this one meeting, because if she knew anything she knew I would never be a nurse.

Point: Mom

Then there was that one time I was reviewing my health history with a nurse practitioner when he jokingly asked why I never considered become a physical therapist, my answer was “because I wanted to learn something new,” obviously.

I think I’ve had similar goals for why I wanted to be whatever I wanted to be at any given time.

I wanted to make a difference in people’s lives and maybe help them see things a little differently.

It’s hard to say if I’ve achieved this goal but I’m working on it.

I’ve realized I spent a lot of time (probably far too much) trying to be something I’m not. It wasn’t that obvious, it was certainly subtle from my prospective, but with each change I’ve made I feel like I’m getting closer to what I’m supposed to be as grown up.

The funny thing is, if you have a weird sense of humor, I feel like who I’m meant to be as a grownup has been following me around for quite a while just waiting for me to turn around and embrace it.

So, what did I want to be when I grew up?

If you can think of it it’s probably something I thought I wanted to do for at least 5 minutes. None of it has panned out as of yet, somewhat thankfully I admit.

And let’s get real for a minute, I have CP I can’t just have any job I wanted (actually that applies for everyone regardless of ability). So, there were countless things I wanted to be when I grew up that I knew would never happen, so let’s all be thankful I was never interested in Ballet, for example.

I did want to be an Olympian. That was one of the few things I convinced myself I could do, even with CP. I just figured I’d automatically be one of those heartwarming human-interest stories you see between events and commercials.

This was before being rejected from even trying out for the swim team & before I knew there was this thing called the Paralympics for athletes with a variety of disabilities. I don’t want to close the door on my dreams of Olympic glory, but it may be a little late to make a run for Rio (and I’ll probably be too old for Tokyo?)

When it comes down to it I wanted to make an impact on people’s lives. I wanted to make them see things differently or think of something they’ve never thought of before. I never wanted to be someone’s inspiration, but if that happened along the way who am I to disagree.

Now all I have to do is grow up

*A similar version of this post was published on November 21, 2014

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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.

Grad School: The Endless Spring

This is a hard post to write because the spring semester doesn’t feel over just yet, even though we are well into summer at this point. This was going to be my longest stretch of classes since going back to school. I knew that right off the bat.

That didn’t make it any less overwhelming, in fact it may have made it more overwhelming.

Rather than give you a full rundown or the last 5, yes, I said 5 instead of the typical 4, I’m just going to give you bullet points

-Not taking a 1 credit class between semesters last year ended up being one of the best decisions I’ve made in my post grad career. If I hadn’t I wouldn’t have had a single break in almost 4 years.

-Being Catholic is vastly easier than becoming Catholic.

-The Church is full of technicalities that must be given attention and remembered.

-The Church is full of semantics that don’t make sense but you should still follow them.

-If you can’t find the answer you can find someone who either knows it or can find it.

-Support comes in many forms, sometimes in multiple forms at once.

-Ministry isn’t all peace and smooth roads, learning the more technical side of it is like walking barefoot on broken glass

-No one is right 100% of the time, even professors and/or priests.

-One person’s definition of “simple” is often another’s definition of “impossible.”

-It’s OK to lean on other people.

-Other people will need to lean on you.

-You will be on the verge of a nervous breakdown at any given point, so will someone else, that’s what group emails and texts are for.

-If you send a group email make sure everyone in the “to” field is actually in the class you are referring to, or else you will quite possibly be responsible for someone’s unnecessary nervous breakdown.

-Being on the receiving end of a “no” can be even more freeing than a “yes.”

-There is such a thing as too much communication between people.

-Being available to everyone in your life all of the time is impossible, not to mention impractical, don’t try to achieve it the collateral damage will be permanent.

-Very few people know what it means to really say yes to your vocation.

-Finding humor when and where you can can make your life choices worth it.

The Gift Of GIFs

Graduate school has officially taken over my brain. I can’t formulate my own thoughts without consulting some set of instructions and analyzing them to death before doing anything.

readingtakesprecedence

And even then, nothing makes sense.

giphy

I embark on the assignment anyway praying I’m on the right track furiously texting classmates under the theory that, “if most of us do the same thing, we’re not wrong.”

giphy1

I still lose my mind the second someone says something that I consider to be criticism.

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Then I question every decision I’ve ever made in my entire life.

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And then I swear it isn’t worth it.

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In the end I get up the next morning & do it all again.

0a5pkc

 

Why I: Joined A Discernment Group

Ten years ago I was looking to make a fresh start after a near crash and burn of my academic career & a list of personal issues. (Side note: The fact that I started college more than a decade ago makes me feel kind of old.)

Here’s what’s awesome about going to a university with an active campus ministry:

There’s always something going on.

It’s almost kind of ridiculous how much stuff you can be involved in (or not).

At the time I wasn’t a practicing Catholic, in fact I was still in the recovery from Atheism phase of things, because that kind of journey practically requires a recovery period. I called myself a Christian but I wasn’t ready to “drink the Catholic k00l aid” just yet.

I steered clear of any organized group outside of the theatre department my freshman year and I was reconsidering that plan for sophomore year. The definition of insanity is doing the same thing and expecting different results, so I didn’t want to do the same thing.

There are always plenty of things to do in a theatre/drama department as well. There are always “other duties as assigned” (to put it one way) or a friend is working on some sort of project at all hours so if you want to see them it’s best to go to them (and then you end up helping on the same project, somehow). But I didn’t want to be a “drama kid,” at least not exclusively.

At some point during orientation, sometime after neighborhood orientation, I huddled into the campus ministry office with other new students to hear their “sales pitch”. This was some place I wanted to be involved. I knew that from visiting a friend earlier in the year. The how was the part that needed to be determined.

I’m not a try everything once type of girl but that’s pretty much what ended up happening. The first few weeks the only thing I had second thoughts on was solemn adoration; anything labeled solemn or somber means I’ll laugh uncontrollably. I needed to be better versed at adoration before the sound was turned off.

The first group I showed up for (I think) was women’s group. I loved that group. In fact many of the ladies I met thanks to that group I’m still friends with today (maybe I’ll tell you about that someday).

The next night discernment group would be meeting. I had no idea what “discernment” was but I figured it would be similar to women’s group so I showed up.

I probably should’ve looked up what discernment was before I decided to go to the group. But if I did I probably wouldn’t have gone.

Instead of sitting in the lounge area we met in the prayer room. And instead of one of the campus ministers facilitating there were two nuns, from The Little Sisters of the Poor (an order I knew nothing about, but have come to love dearly).

At some point during the hour I realized I was in a room full of ladies who were considering becoming nuns. I was in the wrong place, but I didn’t want to get up and leave (for fear of embarrassment only).

I may have countless sisters these days, but back then I had only known two, and the impression they left wasn’t one of full warm & fuzzy memories.

I left that night thinking I probably wouldn’t go back (because I wasn’t even in the same hemisphere of that life path) but when Thursday rolled around again I did. I’m still not sure why. The funny thing is I kept going. I think I only missed a few meetings during the year, when being a drama kid had to take a front seat.

I even went the night when we’d be saying the Rosary most of the time. When I grasped even less of it than I do now & I had to borrow a Rosary from the spares that someone always seemed to have on hand.

For me it wasn’t about discernment, at least not at first, it was about meeting people who just might be like minded. When that didn’t work out so well it was about having concrete examples of what I might aspire to. Not to mention meeting some religious sisters who were not only nice, but they went out of their way to invest in others.

I will never ever forget that Sister Mary David told me it was perfectly fine to fall asleep during adoration “because the Lord knows you need your rest.”

Never mind that I had agreed to sit up with the blessed sacrament only to fall asleep face down on a futon that was in our makeshift retreat chapel.

My original intent couldn’t have been any more off. However I think I got a lot more out of it than I realize (yes, even now). I made a mistake in judgment but it was one of the best mistakes I could’ve ever made (especially given my history with mistakes).

Even if I have come to have a love/hate relationship with the discernment process.

*A similar version of this post was written on September 4, 2013

A Deck Of Cards

I was sitting in a prospective student orientation hearing school statistics. In an effort to create a diverse school environment administrators had percentages they tried to maintain. It didn’t take me long to figure out my admission would be a slam dunk.

And it was. I was admitted; attending was another story.

It’s my first memory of thinking that my “different-ness” could be an asset.

It took me a few years to realize that this was indeed a disturbing thought for a 4th grader to have. That doesn’t mean that there were/are situations where this fact holds true.

There are times when I’ve tried to use having a disability to my advantage. Once you let the genie out of the bottle there’s no getting it back in, so you have to be careful..

 Life consists not in holding good cards but in playing those you hold well.”–Josh Billings

 Some time during high school I realized that my life was like a deck of cards. Sometimes my disability can be my ace in the hole. Sometimes it’s a joke(r). Other times it’s just another card in the deck.

I’d like to say that most often it’s just another card in the deck. Honestly that’s what I’d prefer. However that’s not how the world works, at least not now, but maybe someday.

I don’t walk around highlighting the fact that I have Cerebral Palsy. Just uttering the words “Cerebral Palsy” leaves people dazed and confused. It does open the door for educational moments but most of the time I don’t have the time, or the energy.

When it comes to day to day living I keep things as general as possible, but it’s pretty obvious I’m in the “otherwise abled” category. I prefer to see myself as just another one of “the guys” for a lot of reasons; a big one being I don’t want to hold my disability over people’s heads.

Think of “The Boy Who Cried Wolf” story we’ve all heard. If I brought up having Cerebral Palsy all the time what would that do? It would raise awareness, but would that be for a greater good? I doubt it.

There have been times when I’ve been looking for employment when I wondered if full disclosure would actually work in my favor. I mean companies put disclosures at the end of applications for a reason (& I’m sure they have quotas to fill, just like that school).

There have been times when I really wanted “that” job so the thought of using my different-ness as an asset crossed my mind. But how does someone do that without the potential for backfire?

I’d rather be the best one for the job when compared to other candidates. Not the candidate that filled a quota. I really don’t want to be the person who can’t do a job that everyone knows was a pity hire. (I’d rather not have a job if that’s how I get them)

Having a disability does leave room for other abilities to develop. It’s one of the best reasons to have a disability, in my opinion. As tempting as it is to broadcast my disabilities/abilities for my own advantage, it’s more important to show what I can do and let the work speak for itself.

Life is a deck of cards. Play them well.

*A similar version of this post was written on March 6, 2013

Grad School: The 3nd Fall Semester

I’ve come to realize that I have no idea how engrossed I get in class until I sit down to write about it, without words that can be found in a Catholic encyclopedia.

This semester was up in the air for me up until the first day of classes, at least that’s how I felt about it.

This semester I finished fulfilling my required number of elective credits (I hope). I’d be lying if I didn’t say I still have some apprehension about it. There’s a level of “done but not done” I just haven’t gotten comfortable with.

The semester was fairly light in terms of workload since I was only taking one class, but other than that it was pretty challenging.

It was a small class, which I typically like. However, the make-up made it challenging for me, sometimes in a good way, sometimes not. I’ve gotten used to interacting with the same group of people in so many of my classes it was an adjustment just interacting with different people.

That alone made class hard.

You know how they say sarcasm should never be in an email? It’s kind of like that. If people don’t know you well, like at all.

I spend hours choosing the “right” words, and it turns out the “right words” and the “best words” aren’t always the same thing.

I can’t really tell you if I learned anything related to the topic of the course because most of my focus was on effective online communication (or at least trying to be better at it). I’m sure I learned something, the results will come with time, not unlike a lot of other topics I’ve studied in these last few years.

At the beginning of the semester I wish I could’ve taken more credits but now I can look back and see it as a nice break before heading into a heavy workload.

In all honesty, I’m glad things turned out the way they did, especially now that I don’t have to deal with it anymore, because it made me realize that I had become too comfortable in terms of how I conduct myself as a student.

I also read books that I actually enjoyed, a feat that’s hard to accomplish in graduate school.

Now onto the longest stretch of work I’ve ever had to do, and if I’m lucky at the end of that stretch will be the finish line (oh God please let it be the finish line).

Now What?

This is the 3rd time I’m participated in HAWMC. Each year it comes at a less than ideal time and by the end I can’t wait to write the last post. This year is no different. As much as I get out of blogging everyday this time I just need to be able to check this off the list and move onto the next thing.

What is the next thing?

Practically speaking, there’s a paper to write, podcasts to record, and Christmas shopping to finish (which should’ve been finished by now, because I’m one of those people who shops throughout the year to avoid the added stress).

Ideally speaking, I have a project coming soon. Just how soon? It’s at the editor’s but I’ve already seen what may well become the final product. It turns out I’m very bad at providing feedback short of ripping something, anything, to shreds.

Then there’s grad school to finish which includes a capstone that needs writing. I feels like I’m in the middle of a triathlon I couldn’t find the time to train for, after I signed up and paid the entry fee, so I kind of should do it.

All of this pretty much leaves my career up to chance, word of mouth, and pure luck. It’s not that I haven’t wanted to speak and write more in the last year. It just hasn’t happened. I’m trying to see it as a positive, to give me the time to devote to other things without having to decide what to do or overextend myself.

That doesn’t mean that my life as an advocate is going to be put on the back burner. Another degree will add another dimension to my business, to my advocacy work, at least that’s the plan anyway. HAWMC isn’t the end of the line, it’s a stop on a journey to something greater. But like I’ve said already, the month has been long enough. It’s time to move on to the other things I have on the calendar on the way to where I eventually see myself being.

However, I’m available if someone needs me.

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.

The Other Kind Of D-Day

Here’s a thing about having Cerebral Palsy, most of us don’t remember our own personal “D-Day” (otherwise known as the day we received our diagnosis). CP is typically diagnosed in infancy or early childhood. Therefore, it’s rare anyone remembers their actual diagnosis.

Having CP (or a similar disability) it’s not D-Day that gets you, it’s the acceptance process, which has not clear beginning or end for most people. It can be a daily thing, or not.

Plus CP is unique to the individual so it’s pretty difficult, if not impossible, to predict what a person’s life will be like as they age with CP (plus there are very few studies that deal with people over the age of 18 with CP).

A few years ago, I was asked to write a letter to my younger self since the prompt for today was to write a letter to ourselves on “D-Day” I thought I’d look back on the first letter and see what still holds true to life with CP, even if it has more to do with acceptance & advice.

Dear Self,
You were not dreaming when you opened your report card first quarter of freshman year and realized that you FINALLY made the honor roll; just when you stopped trying and were going to a school that didn’t believe in the honor roll. Apparently, you’re going to take the “grades aren’t the end all and be all” approach right up to the line you promised yourself you’d never cross again. You should try harder, at least turn your assignments in (on time, or at all).

Pretty soon you’re going to have a conversation with your best friend that will make you laugh. What you really should’ve done is seized the opportunity for yourself. It’s not awesome when you know the administration is probably using you to help the school’s recruitment efforts without asking you first. But you shouldn’t have laughed it off so easily. Instead you should’ve looked for the potential opportunity in it. Who cares if you’ll only go to classes on average of 4 days a week your senior year?

You’ll carry the emotional scars from middle school with you forever, but you’ll continue to reconnect with grade school friends and realize you’re worth more than the girl piranhas gave you credit for. The good news is you’ll rarely ever see them again and when you do their lives look far from fantastic. Feel free to mentally gloat for a few minutes, you’ve earned it.

Also, you’re a little bit of a nerd. Own it. You’re with the free thinkers now, not the cookie cutter (alleged) “good Catholic girls.”

Having a gym locker once a year isn’t going to be as great as you think it’ll be. You’ll never get it open yourself. It’s not like you’ll have a lot of books to carry around anyway.

You’ve figured out by now that your mom went overboard requesting accommodations for you, and you’ve ditched them on your own. Luckily no one will press you on it since everyone (with the exception of the administration during open houses) sees you as typical and capable. Enjoy the feeling while you can, because it won’t last forever. In fact, your first year of college with feel like you’ve gone back to middle school.

Speaking of college, it won’t exactly turn out like you’re thinking but it will be even better. It’ll just have a rough start. You’ll just have to wait it out because you wouldn’t wish it to go any other way when you look back on it (speaking as your older self).

You’re already feeling the effects of “old age,” or so you think. It’s not normal to ice your knees every night when “all” you’ve done is go to school. I wish I could give you advice on how to change that sooner but I know you won’t listen either way. Luckily for you things turn around and you reap the benefits for years. So really things work out for the best in the end.

Finally, I’ll end with an old people line, “life is short, enjoy the ride.”

*A similar version of this post was written on April 28, 2014

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.

World CP Day

Every year I struggle when World CP Day comes along, but to be clear I have no problem with World CP Day in terms of playing a big part in the achievement of a goal. I want more people to know about Cerebral Palsy so being against World CP Day would be counterproductive.

I do find it to be counterproductive, not to mention confusing, that World CP is in the fall and Cerebral Palsy Awareness Month is in March. The CP community needs more community, having a “CP Day” & “CP Month” feels like being forced to choose between friends (or overkill having to commemorate both).

So what is one to do?

Jump on every awareness bandwagon that comes by, at least for now.

So what do I write when I’m hesitant to write?

A lot of CP Vloggers have done a “CP Tag.” Starting a Vlog or even just a few videos was something I was considering. But when you consider my limited track record with videos is roughly 1 hour of recording for 1 minute of usable footage any recording just isn’t in the cards right now, which may seem contradictory given my most recent venture. So you’re just going to have to settle for the written version.

CP Tag
Tag Questions

1) What kind of CP do you have?
I have Spastic Diplegia Cerebral Palsy, which means my CP effects my lower limbs, aka legs.

2) How did you get CP?
I’m not exactly sure; I don’t know if anyone could be, because if we knew the cause wouldn’t there be a cure? I was born prematurely (32 weeks) so there’s a good chance that that played a role.

3) How did you feel about a growing up?
Truthfully I can’t remember. Does that make me old? I knew I was different from everyone else growing up, but the words “Cerebral Palsy” were rarely mentioned. There were times when I didn’t like it and there were times when I didn’t mind it at all, usually it revolved around what class I was being pulled out of for in-school PT and/or OT. My parents (and the rest of my family) tried to keep my life as normal as possible so I wasn’t given much of a chance to feel anything other than normal.

4) How has CP impacted your life (good and bad)?
I can’t really answer this question since I have nothing to compare to on a personal level.

However, CP impacted my life negatively because I was teased endlessly throughout school, particularly middle school. What I didn’t realize then, but I now do, is that I was the easiest to pick on because I was the one who was “most different.” I was perceived to be the “weakest” of the herd, therefore the easiest target. It sucked, but I’ve tried to put that behind me, and what I haven’t I’ve tried to use for positive purposes.

CP has impacted my life for the good because I’ve been given opportunities I wouldn’t have if I didn’t have CP. I wouldn’t have the same career, and certainly not the same vocation.

5) Do you ever think about your life without Cerebral Palsy?
I do, but not in the way people might think. When I find myself in certain situations, like after giving a talk or attending a conference, I catch myself thinking, I wouldn’t be here if I didn’t have Cerebral Palsy, so that’s pretty cool.

6) How was schooling with Cerebral Palsy?
I’ve had horrible and amazing experiences in terms of schooling with Cerebral Palsy, bullying aside. I was in a special education classroom in pre-school (ages 3-4) and then moved to mainstream classrooms (with an aide) for elementary school. I ditched the aide around 1st or 2nd grade (I told her to get lost). I was in public school until 5th grade. I was in private (Catholic) school from 5th-8th grade and received no services or accommodations during that time.

I attended public high school with no additional services or accommodations, other than gym class, because the school is so small; in fact, I often ignored what the administration put in place for me and did my own thing with no objections (and the accommodation for gym was more for my safety related to size rather than ability.

I attended 1 year of public university with one accommodation (a room on a lower floor), which was a big fail, but none of that was on my part what so ever. My last 3 years were spent at a private university with the same housing accommodation and accommodations for note taking. I didn’t think I needed any accommodations at all but thanks to a great relationship with the staff at the Disability Student Services offices I was willing to give their suggestions a try and my college experience was so much better for it.

Now I attend a private post-grad institution through an online program (although I am required to be on campus for part of the summer). I have no accommodations and I don’t foresee needing any in the future (but you never know). Thankfully the school is incredibly small so the community is incredibly accessible and supportive when/if needed by anyone.

7) How has your disability changed throughout your life?
Cerebral Palsy itself does not change over time (or so the people with medical degrees say). However, it does change how it affects your life, at least from my experience.

People with CP tend to age more quickly than our able-bodied counterparts since our muscles work harder (I’ve heard somewhere around 3-5 times harder). We’re also more likely to develop arthritis or osteopenia.

I’ve had less surgery as an adult than I did as a kid but I think that’s mainly because there aren’t a lot of studies on the effectiveness of surgery on older individuals with CP. Also a lot of the surgery I had as a kid was to help direct or redirect the growth process. Let’s not forget that medicine/science has developed a lot in my lifetime so that also plays a role I’m sure.

I can’t exactly say when things changed, nor can I explain how each time. But I can tell you that (for me) when some things get worse other things get better. It doesn’t make any sense but that’s just how things are for me.

8) How will things change for people with disabilities?
I can answer this in two ways, the way I’d like things to change or the way I think things are going.

I think things are changing for people with disabilities, obviously, but I wonder if things are going in a positive (or “right”) direction. The disability community is getting more exposure and being included in mainstream society. There’s rarely a day that goes by that I don’t see an able-bodied person sharing a disability related news item on social media. It’s exposure but is it always good exposure?

For example, the “in disability” right now seems to be Down’s syndrome (particularly during Fashion Week) but every article about someone with DS seems to have the same tone. They’re “beautiful,” “always smiling” and have a “bubbly personality,” but not much else.

What does that say to other people, in particular children, with other disabilities? That they’re not beautiful enough? Or that their personalities aren’t as “bubbly” so people won’t give them the time of day?

Cerebral Palsy isn’t much different when it comes to getting media attention. We all seem to “suffer,” “overcome obstacles.” We sometimes are classified as having a “disease,” which couldn’t be more wrong.

All stories attempt to highlight individuals, however so many of them say nearly the same thing.

Yes, things are changing for people with disabilities and a lot of the change is positive but I fear that much of it is venturing into “inspirational porn” territory and that isn’t the kind of change the disability community is looking for, at least I’m not.

9) Do you believe in God? Does that help you deal with having CP?
Yes I do. I wouldn’t say my belief in God helps me deal with having CP directly, but it does play a role in how I live and see my life (much like having CP does)

10) If there was a pill or cure for CP would you take it?
No.

*A similar version of this post was written on October 7, 2015