Things New Volunteers Should Know/Remember

For most of the summer I received emails from the organization I was a volunteer of. Most of them were pretty standard, even the “we still need 3 volunteers, spread the word” email. I was sent the email with orientation information, since all former volunteers are invited, and asked one more thing.

“Do you have a sentiment to share with the new volunteers?”

Yes!

The trouble is it’s hard to put on paper, especially for people just leaving orientation. Your brain is swimming with anything and everything. I knew the chances of something I said sticking are slim. Now had they asked for notes for a volunteer’s first few days/weeks at placement, that’s another story.

Dear newly missioned volunteers,

You’ve probably been at your placements just a few days, even so here are Thirteen Things New Volunteers Should Know/Remember

  1. Orientation was like boot camp, but you’re not done, there’s still more to learn. Each. And.  Every. Single. Day.
  2. You aren’t there as a fill in or a substitute. You are there because they wanted you.
  3. There’s a reason for every workshop you sit though, take it from someone whose housemates are now married (indeed to each other).
  4. You’ll have at least one moment during the year that is screaming at you to turn around and go home. Don’t.
  5. Find a mentor, at your placement, in your larger faith community, in your neighborhood, it doesn’t matter, just find one.
  6. No matter how you decided to handle the holidays you’ll end up homesick, and probably crying at some point.
  7. Focus on community; the one in your house was given to you but build one outside of the house as well. Both will make you a better person, and help the other community thrive. You’re in individual who is part of a community, don’t forget.
  8. Be open to things you never considered. Say yes when you always thought you’d say no, but know that it’s O.K. to say “No thanks.”
  9. Very little will turn out “like you thought it would.” That’s a big part of the beauty of what you’re doing.
  10. You will love. You will hate. You will fight. You will be confused. Sometimes all at the same time, and more than likely never over what you thought you would, dishes in the sink, what’s for dinner, who makes dinner, sharing of items, and toilet paper.
  11. At least one or you will end up in the emergency room at least once. Consider it a right of passage.
  12. Contrary to what you may be thinking (or what other people are telling you), you aren’t there to change the world. You are however going to make the world a better place and that’s just as important.
  13. Just when you think can handle your position it’ll be time to leave. It’s O.K.

Bonus 14. For communities where men are a minority, which will be most of them, be respectful of their boundaries, especially when it comes to the purchasing of ladies only items. If they don’t want to buy them on their run to the store DO NOT push the issue.

*A similar version of this post was written on August 16, 2012

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On The ADA Anniversary

This week is the anniversary of the Americans with Disabilities Act (ADA)

I’ve often wondered if the ADA creates more problems than it solves for some, if not all, people with disabilities. It helps A LOT, but it also causes a lot of headaches.

I’ve come to realize however, that the ADA isn’t really for people with disabilities. It’s for the people who can’t even imagine what life is like to live with a disability.

Kind of like how birthday parties really aren’t for the people they’re throne for but for the people that go to them.

Kinda.

Without knowing it I managed to grow up just as the ADA was finding its “sea legs,” which probably explains why so many aspects of my life have become, in a sense, easier even though my mobility had had an endless ebb and flow.

I once heard it said that, “those who don’t need the law are truly freed from the law,” or at least that’s the best my brain remembers it as.

The idea being (I think) that we wouldn’t need as many laws (or any) if everyone operated with the same level of moral decency.

As great of an idea as this is I doubt it will ever happen, ever. Sorry all of you who dream of world peace.

It would be nearly impossible for someone to be able to imagine what it’s like to live with a disability, unless they do in fact live with a disability themselves; besides the fact that imagining it and living it are two different things.

That’s why the ADA is so important.

It gives people a clue into what’s needed in order for people with disabilities. Although it should be pointed out that what’s deemed ADA compliant doesn’t mean it’s accessible for those who need it to be, but it’s better than nothing.

(So if you don’t know anything about the ADA or just want to test yourself feel free to read up)

As much as I (and countless others) benefit from the ADA there always seems to be something new to learn.

Such as how many loopholes there are.

Like the loopholes for already existing buildings and/or religious institutions.

As a Catholic who works in a building that’s been “grandfathered in” (multiple flights of stairs and no elevator) I curse such loopholes often.

It would be nice if there were less (or no) loopholes in the ADA but that’s only a short-term dream. Someday I’d like it if the ADA was an afterthought, making it in a sense unnecessary because access for all is a natural thing.

It seems so wildly unrealistic, but I can hope right?

*A similar version of this post was written on July 22, 2014

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

The Return Of The Envelope

I was standing at the admissions desk as NRH filling out paperwork before my first ever PT session as an adult. I wasn’t freaked out about the PT. I’ve done that enough to have an odd comfort level. The paperwork was annoying, but typical, until I got to the “emergency contact” portion. That’s when I freaked out.

Who should be my emergency contact?

Typically it’s my mom, but I had second thoughts. She was 6 hours away if the traffic cooperated. If there was going to be a real emergency that required the informing of someone they should be closer than 6 hours away. I thought a pizza delivery “30 minutes of less” window would be ideal. So I put down my roommate. We barely knew each other at that point & couldn’t think of a single person who I knew would be O.K. with it, without asking first.

“When I was at NRH today I had to give an emergency contact. I listed you. If you’re not O.K. with it I can change it.”

“I’m fine with it. Just let me know where you keep your stuff. I keep an envelope of all my information right here.”

Well that was easy.

Now I just had to put together an envelope:
* Medical history
* Surgical History
* Important Phone Numbers
* Copy Of Insurance Card

I left it in my desk until I graduated. When I moved across the country I told my housemates where they could find my info, if needed, because I put down the house number as my contact (meaning there were at least 3 potential contacts).

Almost 2 months ago I went to urgent care in the worst pain of my life; because I needed another reason to put off having children, if at all. I sat in the waiting room while my mom filled out my forms trying not to gag & praying I’d blackout, since that seemed to be the only potential relief.

I was sent to the ER where I sat for the equivalent of forever, before I had to answer all their dumb questions AGAIN. I wish I had my envelope back, more than one actually.

“Can we hurry this up please?!?!?! I’m in a lot of pain here & I’m gonna barf.”

(Painfully unhelpful response I won’t repeat)

Twelve hours later I was being admitted to a medical unit because my test results were “inconclusive.” Guess what happens when you get admitted on a unit? You have to answer the same questions all over again, and this is after 24+ hours of no food, no sleep, a full day of tests, and lots of M0rphine & Z0fran. I was literally falling asleep when the attending came to do her new admission rounds, because at that point you really care what a hospitalist is/does.

The conclusion of all the “in-conclusion” was that I probably passed a kidney stone & it wasn’t my appendix. The evidence being one swollen kidney since no one was able to find the kidney stone or appendix.

My conclusion? Time to bring back the envelope.

I had a follow up with an urologist in order to attempt to put this whole thing to rest since my goal is to never repeat this experience. The first was to tell me that it does in fact look like I passed the stone & to give them more details about my time in the Big House. The second was to go through everything again with the urologist after an ultrasound.

I’m “back to normal.” No restrictions, since no one seems to be able to even guess how this all happened. It could happen again, or not. My appendix is still missing however.

*A similar version of this post was written on August 21, 2012

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.

Speaking, Again

The last podcast recording I meaningfully took part in was about a year ago. I was feeling that it was time to move on, because podcasting is more work than I had anticipated, even though I basically just show up and talk.

However, the fates had other plans.

I stopped watching Speechless halfway through the season. It wasn’t intentional, but it was a perfect storm that made it pretty easy to stop watching & not feel like I missed anything.

Instead I watched other things, on network TV, cable, and Netfl!x; and noticed a lot of portrayal of disability (and lack thereof, etc.).

Some of it was good, some was great, some was downright horrible. I asked Daniel if he would be interested in recording a podcast on the subject, and he was.

So, we did.

2018-05-02

What do you think about the various portrayals of disability on TV (or media in general? Do you have any favorites? How about aversions?

When Dreams Become Anything But

By this time last year I was dreaming about what my life would be like without school.

I was literally dreaming of being able to pick up a book or watch a TV show without time constrains, journal, and look for more meaningful long-term employment with more intentionality.

Now that I have the time to fulfill this dream it’s more akin to a nightmare than a dream.

I won’t go as far as to say I miss being in school, but it did provide me with a certain amount of structure I’m struggling to create on my own.

The congratulatory messages have slowed down, but have not stopped completely, which adds to the complexity of my situation. The questions of “what’s next?” have followed, and I feel utterly stupid saying “I have no idea,” even if it is the honest truth.

I have an idea of what I’d like my “next” to be but that doesn’t mean it will happen, at least not right out of the gate. It would be nice if that happens but age has taught me to be more realistic than optimistic.

I check job sites every day and sometimes submit 3 resumes, complete with individually written cover letters. I have gotten interviews, so that’s one step further than I had been getting in the last few years, but nothing past that.

Nothing.

I knew looking for a job wouldn’t be dreamlike. I was pretty sure it would be pretty much the opposite. But I was hoping the other things I had on the back burner for years would give me a sense of balance, not getting a job would be offset by being able to read a book at will.

I see how ridiculous this sounds, but I believe it, well believed.

I have read a fair number of books in-between writing cover letters but it’s not as dreamlike as I would have thought. The reading books part, not the writing cover letters part.

It’s a weird experience to write about yourself. You become incredibly analytical of yourself, every shortcoming gets magnified and every strength gets minimized, at least if you’re me. Then you’re left wondering, “is this really me?” “Is this really my best self?”

It’s really not the best place for your mind to be in when you need to be on your game, but you make do.

Now instead of dreaming of what my life may look like a year from now (or even any shorter window of time) I’m managing my expectations, not putting all of my eggs in one basket and not getting my hopes up most of all.

Life isn’t turning out the way I thought it would in post-postgrad life but what does?

By this time last year I was dreaming about what my life would be like without school.

I was literally dreaming of being able to pick up a book or watch a TV show without time constrains, journal, and look for more meaningful long-term employment with more intentionality.

Now that I have the time to fulfill this dream it’s more akin to a nightmare than a dream.

I won’t go as far as to say I miss being in school, but it did provide me with a certain amount of structure I’m struggling to create on my own.

The congratulatory messages have slowed down, but have not stopped completely, which adds to the complexity of my situation. The questions of “what’s next?” have followed, and I feel utterly stupid saying “I have no idea,” even if it is the honest truth.

I have an idea of what I’d like my “next” to be but that doesn’t mean it will happen, at least not right out of the gate. It would be nice if that happens but age has taught me to be more realistic than optimistic.

I check job sites every day and sometimes submit 3 resumes, complete with individually written cover letters. I have gotten interviews, so that’s one step further than I had been getting in the last few years, but nothing past that.

Nothing.

I knew looking for a job wouldn’t be dreamlike. I was pretty sure it would be pretty much the opposite. But I was hoping the other things I had on the back burner for years would give me a sense of balance, not getting a job would be offset by being able to read a book at will.

I see how ridiculous this sounds, but I believe it, well believed.

I have read a fair number of books in-between writing cover letters but it’s not as dreamlike as I would have thought. The reading books part, not the writing cover letters part.

It’s a weird experience to write about yourself. You become incredibly analytical of yourself, every shortcoming gets magnified and every strength gets minimized, at least if you’re me. Then you’re left wondering, “is this really me?” “Is this really my best self?”

It’s really not the best place for your mind to be in when you need to be on your game, but you make do.

Now instead of dreaming of what my life may look like a year from now (or even any shorter window of time) I’m managing my expectations, not putting all of my eggs in one basket and not getting my hopes up most of all.

Life isn’t turning out the way I thought it would in post-postgrad life but what does?

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

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