If You’ll Excuse Me

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I’m pretty busy.

Because of this.

I won the battle & I sure as hell wasn’t going to turn it into a war.

 I brought out the heavy artillery, also known as my credit card.

ReadyStart

 The best part?

I’m setting up my new office!

Office1

The best-er part?

I can now work without ever leaving bed, if I so choose, which may be often, mainly because I’m lacking anything that could be called a desk (near a protected three prong outlet anyway).

I mean I am calling this a bookshelf, still.

BookPile

My credit card requested a vacation before making my workspace more office-like. This being my first big purchase since college (best guess), I’m happy to oblige.

Aren’t You Inspired?

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I was at America’s Most Beloved Ballpark (at least most beloved by me) waiting for someone to say “Play Ball.” I turned my attention to the video screen to watch a short video, which ended up being about marathon sponsorship.

 “Aren’t you inspired?” my friend said to me.

 “No. I find nothing appealing about running half a mile, never mind running for 26 miles. Why would you do all that work just to collapse at the end? I find it inspiring, but not inspiring enough to do it myself”

24 hours later two bombs went off on Boylston Street.

I have friends who live in Boston & they go to marathon Monday every year, some have run the marathon in the past. I spent that Monday night exchanging texts with everyone I knew was probably there (they’re all fine). I spent Tuesday on F@cebook accounting for everyone who had slipped my mind Monday night (they’re fine too).

Many who run on marathon Monday attend the Red Sox game the day before so as the number of injured continued to rise I thought about all of the BAA jackets I saw around Fenway.

I kept an eye on my F@cebook feed for the rest of the week. My friends & family are fine, but some of their friends aren’t, at least one lost a leg.

I think it was less than 12 hours after the blasts that the fist one of my friends committed to run the Boston Marathon next year. Then another. I couldn’t believe what I was reading. But they’re my friends so I wouldn’t expect anything different really.

Boston is a city I’ve grown to love, for obvious reasons. Boston gave me my life back; the doctors, the nurses, the PTs, my friends, the Red Sox.

Boston has become the city where hundreds of lives have been changed forever for no other reason than 2 individuals decided to bring harm onto others.

As events unfolded I was as interested as everyone else. I think, however, I had a reaction shared by only a few. Pride in a city I’ve grown to love and confidence that good would overcome evil.

There’s only one Boston; there’s no doubt about that. Cities should be more like Boston, in my opinion; united for a common good.

Boston has shown the world the power of community.

I keep thinking about that question my friend asked me last month & what my answer is now.

Aren’t you inspired?

Yes, but I’m not surprised.

BADD ’13: Is There Internal Prejudice?

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Today is Blogging Against Disablism Day If you want to know more about Blogging Against Disablism Day visit Diary Of A Goldfish. She outlines it better than I ever could, since she founded it and all.

I’m something of a BADD veteran; I say that with the only qualification being that I couldn’t remember how many years I’ve participated until I looked it up.

I think there’s an assumption that the disability community is one of the most accepting communities out there. I’m not saying that it’s a correct assumption or not since it’s impossible to judge such a thing. I just think it’s an interesting assumption. I wonder where it comes from, the reasons behind it and such.

Maybe people think it’s because most people with a lifelong disability were teased at some point and that’s what makes them more accepting, you know, because others haven’t been of them, or something.

Earlier this year someone gave me the idea that others (in the disability community) might see me as a faker because I use a wheelchair.

I thought this was a strange statement. I had never considered the possibility, even though it probably has happened, at least once. Even though I never considered this before I’ve put a lot of thought into it now. I’m not saying it’s been in the forefront of my mind for months but it’s been a passing thought (more than once).

 It’s not that I’m oblivious to the idea that I’m judged based on my abilities and/or disabilities. In fact I know it’s going to happen, so much so that I brought it up in a job interview.

I don’t remember what the question was, or even my full answer, but I remember saying that there have been times that I’ve been seen as “not disabled enough” and how I thought that was a form of prejudice.

Then I waited to for the interviewer to hang up the phone, thus ending the interview. Actually I thought about hanging up the phone myself to save myself the embarrassment, or even worse, more questions (especially ones that could result in a bad interview & then not getting a position I really wanted).

I think it’s a common problem of Cerebral Palsy (although I could be wrong). Cerebral Palsy is an umbrella condition, meaning it varies in severity. I wasn’t able to get a wheelchair of my own until insurance requirements changed. The rational was, “she can walk, so she doesn’t need a wheelchair.” Never mind that CP causes muscle fatigue and assistive devices, like a wheelchair, can help with that.

I’m no stranger to prejudice. I think that goes for anyone who considers themselves to be part of the disability community. That’s not what I want to explore. Been there done that. But are there ever internal prejudices within the community, as there are in the “outside” world?

If I was going to think this though, which I’m not sure I have that’s why I’m putting out there on the internet, I’d have to start with myself. Do I judge people? Do I have prejudices? Of course I do; to put it very simply. (I admit shamefully)

As much as I say I’d rather focus on abilities than disabilities it’s largely with people that I know and in controlled situations. Someone walking or even rolling down the street? That’s often another story.

I’m not sure when or how it turned into judgment, but somewhere along the line it did. All I really wanted to do was know a person’s story, but was never brave enough to ask. (Or at least that’s what I told myself.)

In an attempt to defend myself I’m going to tell you that this doesn’t stay within the disability community. It happens with everyone I pass on the street or see on a daily basis. I’m a non discriminating judger of people.

Now that I’ve caught myself (and called myself out) on it I’m going to be more mindful of my actions, known and unknown to those around me.

What do you think? Does the disability community have internal prejudices?

For more BADD posts visit Diary of A Goldfish, The BADD Facebook Page, or BADD on Twitter.

If There Were No Social Media

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I’m participating in WEGO Health’s Health Activist Writer’s Month.

I had to have a good laugh at myself when I read the prompt for this post. I’ve seen what my life would be like without social media. I lived in a technology drought for the better part of a year. I won’t lie, there are aspects of being social media free that I really like. I wasn’t as stressed out and overwhelmed by trying to “keep up,” for one thing.

If there were no social media my life would be vastly different. I’d probably continue to confine my writing to college ruled notebooks stored under my bed, which I still do regardless. I didn’t regularly interact with other people in the CP community before social networking.

I certainly didn’t have any CP related friends until I started keeping a blog, and even that was a few years in the making.

I’m not an extravert by nature so I don’t really like going to bars or clubs. I think it has something to do with not having the most reliable balance, especially in crowds, but you can never really be sure. Typically I make friends by having common interests with people, attending the same events, or sharing similar experiences. And I’m too socially awkward to pull that off in a bar.

Having Cerebral Palsy can be pretty isolating, even if you know someone(s) with CP, so social networking opens up more possibilities to meet people. That’s always a good thing, usually. It also gives you more freedom to create a community of your own. There’s no way I’d have half of the relationships I do now without social media. That’s just the fact of the matter.

Without social networking I wouldn’t have known about the contributions people with CP have made to the world. I won’t be so driven to make my own contributions to the world at large either.

I may go as far to say I wouldn’t have changed career paths because of it, but that may be going one step too far, especially given how I limit myself when it comes to technological advances.

I know one thing for sure, without social media I’d have to think a lot longer and harder about what I would write about. I may write every day but it’s rare that I come up with new ideas at that speed. Shameful, I know. Being able to read other people’s thoughts spur my own, and in ways that you just can’t get from a book.

I’m tempted to say that without social media I’d feel separated from the communities I’m a member of, but the truth is I can’t really be sure. It would take more work to keep in touch with people, but I think that might be a good test of durability. It does make staying connected easier. But does it make it better? I’m not sure. I don’t think I’ll know the answer anytime soon.

I can’t say that my life is better with social media, but it’s certainly different.

If you want to find out more about Health Activist Writer’s Month Challenge visit their blog, Facebook, Twitter.

Hindsight Is 20/20

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I’m participating in WEGO Health’s Health Activist Writer’s Month.

You learn a lot being a professional patient. You learn more terminology and technology than your peers. You also learn what people don’t know. It’s often shocking how much medical professions don’t know.

You don’t expect one person to have all the answers but you expect them to know someone who knows what they don’t know. So it’s always surprising when no one knows the answer. It’s even more surprising when no one seems to want to do anything to help you.

I admit I was naive to the fact that Cerebral Palsy is indeed a lifelong condition that needs to be managed and monitored, even in the mildest of cases. It wasn’t until I was faced with a decline in function & chronic pain that I began to deal with reality.

I knew I was always going to have Cerebral Palsy. A cure was not in my future, not that I would take it. What I didn’t realize was that I’m really not like everyone else, although I am more alike than different. What I mean is I’m different enough that I can’t be just like everyone else, at least not anymore.

When I did seek help I was shocked at how little help I got; wasn’t refusing to treat someone and not offering leads going against, “first do no harm?” Apparently not.

Never mind some of the reasoning I got for not wanting to treat me, after making me wait for hours and charging me for the visit mind you (I’d rather be turned away on the phone while making the appointment). Let’s just say nothing makes you feel old (in a bad way) like people bringing up your age all the time.

I’m still surprised at the self-advocating I’d have to do (and still do) in order to get adequate medical care. And that’s with the hope that I’m able to find something somewhere. I’m all set now, as far as I know, but I can’t speak for the future.

Needless to say I think I’ve done enough internet research on my own to get a Ph.D. in “patient-heal-thy-self”-ology. I’m also a medical resident’s worst nightmare, but I think I was that even before I started researching on my own, now I just have the information to back up my theories.

I’m learning that the future for adults with Cerebral Palsy is largely unwritten, which has good and bad points to it. There are currently no long term studies on individuals over 18 who have Cerebral Palsy. There aren’t even enough adequate health care providers, so how can there be studies.

I wish I knew at 20 what I now know closing in on 30 (or sooner); although I’m still not sure I would change anything. I should’ve paid attention when I didn’t have to fight so hard to get attention. I should’ve asked the questions I thought were stupid and didn’t ask. I should’ve asked any question at all. I shouldn’t have told myself, “I’ll worry about that later,” because “later” came a lot sooner than I expected it to. I should’ve taken my health more seriously when the professionals did. Then maybe we wouldn’t have to work so hard to be on the same page today.

I think I will always be surprised that there’s still so much work to be done in the 21st century, and how much has been left unchanged, for a condition that was discovered in 1860.

If you want to find out more about Health Activist Writer’s Month Challenge visit their blog, Facebook, Twitter.