I Went To Mass

This semester I had an assignment I really wasn’t looking forward to. In fact I thought about trying to find a way out of it (by playing the D-Card since the vast majority of churches aren’t accessible), but remembering my history of trying to get out of classwork I reconsidered.

The assignment was to attend a church within the Catholic tradition but not of my native culture; basically go to a mass that isn’t celebrated in English (or Latin, since that’s the 2nd language of some Catholics).

Once we chose a church we were to independently research cultural customs in relation to Catholicism to prepare for the visit. Originally I had intended on using friends for research and as “mass buddies,” because I’m not too crazy about walking into new and potentially uncomfortable situations solo.

Instead I found a church that looked like it would be more interesting, and potentially set myself apart from my classmates. But there would be no safety net. In fact when it came to “voice our concerns about our visit” I came right out and said (well typed) that I wasn’t concerned about the language barrier as much as I was the physical barriers.

I did as much research on the physical barriers as much as I could, which was probably more effort than I put into the cultural research. I could’ve called the parish office and asked but decided against it, for one thing being told, “we’re accessible, we just have stairs” is one of the more annoying oxymoron’s ever told, for another, if I’m going to be realistic about my research I need to know what’s out there, even if it’s ugly.

I was lucky enough to find one of the very few churches that has daily mass twice a day (1 English mass, 1 not) so I decided to go to daily mass rather than a Sunday mass, figuring daily mass would have a smaller crowd. I figured a smaller crowd would already be inside when I arrived so I could take my time with the stairs, if there ended up being any.

I arrived at the church prepared to climb a substantial amount of stairs, and there were a few, but there was also a ramp (And the heavens parted). It wasn’t a ramp that required much of a remodel to the building since it went over the existing stairs but it was clear that this ramp was meant to stay since it’s big, sturdy, and at a good angle for anyone that may have to propel themselves up it.

Although the ramp wasn’t at the main entrance it was close enough to the main entrance that I didn’t feel that instant pang of separation as you would seeing a sign saying “handicap access at back of building.” The door looked like a typical stained glass door that you would find at many other churches, except there was a hand plate for an automatic door to the side. I thought, “How much do you want to bet this doesn’t work because it might cause damage to the glass” (which I can understand but then the door should be made of another material). I hit the button anyway, and the door opened, and a choir of angels sang (not really, but they should have)

Although there were no “pew cuts” for wheelchair users or obvious places to safely put mobility aids the aisles were big enough that parking a wheelchair at the end of a pew wouldn’t cause an obstruction to others. Nor were there any rows that were marked as “reserved for the handicapped,” a personal dislike of mine.

It was obvious that this parish community wanted as many people as possible to feel welcomed. How many churches do you know of these days that offer 2 masses daily (in 2 languages), 5 masses on Sunday in 3 three different languages, AND is accessible? (The bulletin is bilingual as well.)

I may not have understood the language and fumbled my way through mass, because I’m still adapting to the “new” responses (it’s only been like 3 years), I still felt welcomed. A feat every church should strive for but few actually attain.

After mass I sat down to write out my assignment, reflect on the cultural differences one can find in the Catholic Church, and I did. However I spent twice as long on the assignment because I kept diverting to other aspects that caught my attention, like the ramp & the automatic door, and how in the end the language barriers didn’t bother me at all because I was in a building that was built at the turn of the century, looked it, and was still nearly barrier-less.

In hindsight I probably should’ve made the case for the fact that the disability community is its own culture within itself.

I went to a church that wasn’t mine & felt truly welcome. (I may even go back for an English mass or two).

On Being An Activist, Not An Inspiration

Typically I write and schedule my posts ahead of time. For someone with some of the worst time management skills on Earth, coupled with ADD, it’s just a better system (and why I can’t manage to post every day without some sort of help).

The post I originally planned to post today didn’t feel like it “fit” today. You know those strange feelings you get like, you shouldn’t go somewhere, or Déjà vu? Sometimes that plays a part in my blogging process. So I moved my post for today to next week (unless the feeling comes back).

Then the news broke that Stella Young died unexpectedly.

She wrote a letter to her 80 year old self, recently, that people shared all over the place. I read it at my earliest opportunity, which happened to be the night I heard of her death. (I’ll spare you my philosophical and emotional thoughts on that).

Although I never got the chance to know Stella personally I feel a sense of loss with her death. I don’t want to go all, “We few, we happy few, we band of brothers,” but it wouldn’t be the biggest stretch of the imagination since the bonds of the disability community seem to run deeper than the everyday population.

There’s this thing that happens when you’re asked to give a speech, at least if you’re anything like me, you spend more time watching other people give speeches (and thanks to the interwebs this can go nonstop for days on end). You don’t really listen to the speeches either; instead you’re watching their posture, movements, what they do with their hands. Seriously, what to do with my hands always puzzles me.

I really wanted to find wheelchair (or crutches, walker, cane) users giving speeches & how they handled their time in the spotlight. What do they do with their hands? What’s their mic set up? Do they use note cards or have notes on their computer from behind a podium?

And I found Stella.

I watched how she presented herself AND her topic.

She made me laugh, not just because she brought humor to her talk but because there are some experiences that everyone with a physical disability seems to share, and if you don’t laugh about it the inner angry cripple isn’t going to become the outer angry cripple.

She’s also the one who introduced me to inspirational porn.

It’s also nice to see someone else out there who has a similar outlook on life and similar thought process, and has a bigger platform no less.

One of my favorite quotes from Stella is this, “I want to live in a world where we don’t have such low expectations of disabled people that we are congratulated for getting out of bed and remembering our own names in the morning. I want to live in a world where we value genuine achievement for disabled people.”

I don’t like living in a world where working incredibly hard to regain your physical baseline is seen miraculous. It’s not fair to the person with a disability or the one(s) claiming miracle, not to mention a big fat lie.

Stella wouldn’t like it if I ended this by calling her one of my inspirations, so I’m not going to do that. She’s not an inspiration, but she’s shown so many how to advocate and be an activist. That cannot be overlooked.

I read that Stella considered herself to be an atheist ever since she heard that there was only a stairway to heaven. So wherever she is now, if anywhere, I hope it’s universally designed :)

I know many of you out there have no idea who Stella Young is so I wanted to give you a chance to get to know her the same way I did.

17 Things Stella Young Wanted You To Know

How Stella Young Wanted To Be Remembered:’Strong and fierce, not sweet or fragile’

On Epilepsy

November is Epilepsy Awareness Month.

I meant to write a post sometime in November but every time I tried the words wouldn’t come out and even when they did they were just the wrong words.

I don’t know much about epilepsy but I wish I didn’t know what I do know.

I wish I lived in the place where ignorance of Epilepsy was where I found my bliss (or at least part of my bliss).

Cerebral Palsy and Epilepsy often come as a package deal; however I managed to dodge that one somehow. In fact I didn’t know anyone with CP & Epilepsy until a few years ago.

There was a girl in my preschool class with epilepsy, but I didn’t know that’s what it was. I knew she had seizures and had to wear a helmet in case she ever had one and fell, but I never saw her have a seizure. In fact the only seizure I ever heard anyone talk about was the one that ended up killing her. One day she was in my class and the next day she had died. That was it.

I knew seizures weren’t good, because they meant you had to wear a helmet all the time and that you could die from having a seizure (which isn’t a bad grasp for someone under the age of 5).

I never thought more about Epilepsy after that, and then it came closer to home.

I, somewhat naively, thought this could be a onetime thing. It happens. People have 1 seizure and go on medication as a precaution for a period of time. Done & done.

Then it happened again.

My 1st thought was, “well there’s another label someone doesn’t ask for, but gets anyway.”

I, again naively, thought this would bring about an easy fix.

It’s been decades since my classmate died as a result of a seizure. Epilepsy has a community that’s fairly well organized & they have more notoriety than other disabilities (like CP). Neuroscience is a booming field so Epilepsy, while challenging is no sweat in comparison to the other stuff, or one would think (I did).

The reality is that Epilepsy isn’t always that easy to “fix” or treat.

Every condition has its challenging elements/individuals (I know that from firsthand experience).

I can’t talk about what it’s like to live with Epilepsy, only what it’s like to watch someone live with it.

The only thing I can tell you for sure is that if Epilepsy had to become part of my extended family I wish it would’ve chosen me instead.

Here me out, at least before you think I’m a glutton for punishment and/or a complete loon.

I don’t wish I had Epilepsy. I don’t need another diagnosis, never mind another case that’s “unusual” and calls for “somewhat unorthodox treatment.” I don’t need another medication (or more) to remember to take and side effects to combat.

I’ve been living with one foot in the professional patient world my whole life. I don’t have it all figured out, but it’s not completely foreign either. I don’t have to figure out how to navigate getting my needs met. I’m not afraid of hitting rock bottom and not wanting to get back up again when no one has an answer. I’m not afraid to ask the questions I don’t want to have to ask and question the answer that comes after. I don’t like when people see me at my worst, but I’m not one to run and hide because of it either.

I’d rather be the one with the diagnosis than watch someone I care about live with one. Selfish? Maybe Sick? Probably. But it’s the truth.

November Blogathon: Holiday Wish List

What’s on my holiday wish list? Be prepared to be awed, or bored to death, by my nerdy-ness.

I’ve had my eyes on a Theological Dictionary since this summer when classmates were talking about “the best things they ever purchased during their studies,” typical theologian-in-training conversations. They’re stupidly expensive, at least the quality ones, and misunderstood. For example, a concordance and a dictionary are not the same. But I still want one. It really would’ve helped during my first semester.

That’s all I really want for Christmas, given that the probability of getting one is like seeing Big Foot.

But there are a few other items that have caught my eye:

The Catechism Of Hockey- I saw an online ad for this on some website and I haven’t been able to get it out of my head. I’m a big fan of anything that makes Catholicism more approachable to people who may just need something to help them get their foot in the door.

A “Tech Handyman”- There’s so much tech related stuff I need done in terms of tech items I wish someone would just take care of it for me. I could probably manage to get it all done on my own but I just don’t have that kind of trust in myself, and it would probably take twice as long if I did it myself. (Have I ever mentioned that I still have countless documents on disks?)

Highlighters- Also known as the 1st thing I bought upon learning I was accepted into a grad program, that’s how unprepared I was for the experience. I’ve been averaging 5 highlighters a semester, at this rate I’m wondering if there’s some office supply drop off service like there is for groceries.

Sweatpants- Specifically these.

I already have 2 pairs, 1 in each color available (since that’s how I do things), but I wouldn’t mind another pair, or 2.

Airline Miles (or Buddy Passes)- I’ve got a lot of traveling to do this year for events, weddings, ordinations, friends in national tours, probably an expo or two, and school (not counting any business related travel). As awesome as all of this excitement is it also adds up to a lot of cost (not to mention time off work which doesn’t help negate costs). It would be really great if I had a friend or two with an abundance of unused airline miles they’d be willing to gift me, or if I could be friends with a pilot willing to give up a buddy pass (or 6).

November Blogathon: Thankful Thursday

This is a special edition post for 2 reasons, 1. I’m posting on a holiday & 2. Thankful Thursday happens over at Run Sickboy Run as well.

What am I thankful for?

Community: I’m SO thankful for the community that’s formed around me. I spent my teenage years and a good portion of my early 20s wondering if I’d find a group of friends (a community really) that I felt like I really belonged to. I’ve been incredibly fortunate to have a community of friends that’s formed around me (instead of my needing to search for one). It’s great to be able to say that whenever I’m feeling stressed or in crisis mode (or any other emotion) that all I need to do is reach out and someone will be there.

Opportunity: My life has provided me some pretty awesome opportunities, so anyone that tells you that living with a disability would be (or is) a complete downer it only looking at it from one angle. I’m thankful that I have people who think of me when an opportunity arises that would be a good fit for me (and for them).

Vocation: I’ll just say this, I’m glad not everyone has to discern their vocation and that their vocation finds them. Other than that, read this.

Vacation: (Looks the same at the item above but it’s much different) My job, as in the main source of my income, doesn’t have paid vacation (or other benefits for that matter) so a vacation isn’t your typical vacation. Even so I’m thankful for the time off. It’s not so great for my bank account but it affords me the time to catch up on things and get in some downtime.

Sleeping In: I love sleeping but I’m particularly thankful for people who decide to sleep in. I’ve been going swimming at least once a week for a few months now & the pool is always far more crowded than I like (even 5 minutes before the place opens). Lately the place has been deserted by the time I’m taking my last laps. I’m hoping this trend continues, selfishly, even if it means getting up early in the winter.

Prospective: I’ve had some pretty crappy days lately; some days I know the reason(s) some days I don’t. It’s not the most awesome thing, especially when you need to keep it together in order to stay on top of my schedule. Thankfully a little prospective has a way of going a long way these day, and I hope I don’t lose this ability anytime soon, like ever.