On The ADA Anniversary

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 thrown 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 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

What Is Cerebral Palsy Anyway: A Review

Cerebral Palsy Awareness Month is drawing to a close. Tomorrow focus will shift to other topics, diseases, and getting taxes done (among other things). To be honest I can’t wait, every year I think blogging for so long on one topic I know so well will be easier than the year before. It doesn’t get easier; it just gets different.

This month didn’t go how I thought it would. But when does my life go exactly how I planned? So there wasn’t as much new content as I had planned on nor did I cover all the topics I wanted to but I had plenty of content to repost, and I have a few ideas to develop for later on.

The month may be over but that doesn’t mean Cerebral Palsy goes away until next March. It still effects people every day so the need for greater awareness should happen every day. So I’ll still be here doing my part and hoping you’ll do the same.

If you have any questions or topic suggestions, please be in touch. I try to cover a variety of topics as efficiently as possible but sometimes I don’t cover something as much as someone would like, or I miss it totally.

This Month’s Posts:

What Is Cerebral Palsy Anyway?
End The Word
Put A Label On It
What The GMFCS?
SDR: Thoughts Almost 30 Years Later
Why I: Use A Wheelchair
Wheels Of Their Own
Being Special
The Letters
From Here To There
Standing Is Stupid
Let’s Get Spiritual
It’s Not Easy Being Green
Of Malpractice & Men
Practice Makes Almost Perfect
Things That Go Jump In The Night
No Hope For A Cure
The Difference Between Want & Can
Cerebral Palsy Awareness Day
Suffering, Cerebral Palsy & The Media
Illness & Cerebral Palsy
Thoughts On Doctors

Relevant Posts From Last Year:
Cerebral Palsy Awareness Month posts for 2015
HAWMC posts for 2015

The Letters

Now that I’ve told you about Dr. Bowtie & his magic office I should probably give you a better experience to remember, because experiences like that are in the minority (or at least they should be).

When all was said & done I decided the best way to turn around my situation was to change it altogether. I had done much better in the spring semester, but starting fresh made the most sense. I think part of the reason why I did so well in the spring was I had a clear goal, get out as successfully as possible.

While preparing to turn my educational ship around I read something about the Disability Support Services (DSS) office. It was good they actually had information included in the welcome material. You didn’t have to request the basics, because it was already there for you. I also liked that they called themselves Disability Support. Here I would not be “special”. I would be normal. The “support” I hoped meant I would have some sort of say there.

I was still recovering from my face off with Dr. Bowtie but I picked up the phone and called DSS. If I was really starting fresh, I had to at least look into this. Over the summer I communicated occasionally with the head of DSS. She seemed understand & more than willing to work with me.

At some point she suggested that I have letters of accommodation to give to each of my professors; the idea being that even though CP only affects the majority of my lower body something as simple as note taking fatigue shouldn’t be the thing that tanks my GPA. Having narrowly missed academic probation by failing a few classes & now that I would be receiving a scholarship contingent on my GPA the idea appealed to me.

My first week on campus I had a meeting with the assistant director of DSS, who I got along with from the go in spite of my previous experiences, about how my accommodations would work; I still wasn’t too sure about the whole thing but the fact that they were clear on the fact that I would come to them for help if I needed it helped.

Naturally I was most hesitant about the letters of accommodation. I was given 6 sets of letters, one for each professor & one for my records. I read over my copy & I couldn’t hold in my one question any longer. Did I have to give my professors these letters? The answer was no. It was up to my own judgment. But I was still skeptical.

“Look, just take them. That way you don’t have to come back if you change your mind.”

I should also tell you that it was though my good relationship with the DSS office that I agreed to psycho-educational testing. As a result, I was officially diagnosed with a learning disability, mild ADD & test anxiety, something I’d suspected for years & was relieved to make it official.

I could be as open about them as I wanted to be. I discovered that the best way things worked for me was to give the professor the letter (or not) at the beginning of the semester, usually at the end of the first class, and told them that if there were any questions from there end we could set up some kind of communication. For some I was the first student in their teaching career to request accommodations, no matter how long they’d been teaching, so it wasn’t fair to ask for an answer 5 seconds after handing them a letter.

But everyone handled the same situation differently. I had a class with another student that had similar accommodations; the only reason why I knew was from seeing him in the DSS office. He gave the professor his letter right off the bat & seeing me in the class took it upon himself to tell the professor I was “the same as him” & point in my direction.

“You are so lucky to have people take notes for you.”

I wasn’t lucky, in that moment, I was dying of embarrassment.

Obviously some professors take things like this better than others.

My math professor took it in stride & arranged for me to take tests in the math department, where the secretary gave everybody snacks. There was really no better stop gap for my test anxiety than a snack.

My New Testament professor was confused, and I’m not sure he could be bothered, so my arrangements were turned over to the section TA, who was more than accommodating.

My directing professor requested a one on one meeting in his office later in the week, which was actually a first for me. I agreed to the meeting out of curiosity, since one of my best friends always talked so highly of him. He wasn’t my adviser, and after this meeting I wish I could’ve changed that, but he took an interest in me as an individual. Yes he had a class, but it was made up of singular & different people. He asked me what my plans were. Did I want to be a director? And so on. I think I even said I was in the class just because it was required.

“I could create different assignments for you. What would you like to do?”

EXCUSE ME?

These letters could be my easy way out.

Did I want the easy way out?!?!

It was tempting. Really. Directing was the class I really didn’t want to take. I was equally fearful of movement class, but I felt more “game” for that than directing. However, I have to laugh because I loved directing class & dropped movement after 1 session.

I thanked him & told him I’d think about it. Of course the first thing I did was talk to my friend. She’d taken the same class the year before & gone abroad on a performance trip under his direction, she’s also one of my best friends. If anyone knew if I was really cut out for this it was her.

“It’s not nearly as difficult as you’re thinking. You can do what you want, but you have it in you to take this class, and get an A. You’ll enjoy each other.”

I saw it as a challenge. I could take the easy way out. For two years all I wanted to do was find a way to get out of this requirement. Now that I had it I had to think if I really wanted it.

I took the class with no accommodations. I learned a lot, enjoyed myself, and was in fact sad when the semester was over. I’m still glad I didn’t take my easy way out. The only one that would’ve suffered from it would have been myself.

Lesson: Just because help is available doesn’t mean you have to take it. More importantly when people are willing to bend over backwards for you really consider your motives.

*A similar version of this post first appeared on an old blog on March 14, 2012

Being Special

You should’ve told us you were here. We would’ve made this experience much different for you.”

I was sitting in the Special Student Services office having an apparently overdue meeting with the head of the department. I had asked my mom to attend the meeting with me, because I had no idea how this was going to go.

I wasn’t even a month into my college experience & I was barely making it. I had dropped a class, was already failing another, and was told I had a 25% chance of graduating on time, had to walk a minimum of 20 minutes to each class, was losing weight at a rapid pace, and lied to my cousin telling him going to the same school & living in the same dorm was pretty awesome.

All I could think was; I don’t want to be this kind of special.

I was DONE.

This nerd in a bowtie was telling me how I should’ve begun my college career. He never yelled but was constantly condescending. I’m not sure how I actually ended up in that office but within 5 seconds of being there I knew I was in the wrong place. The whole situation was wrong. I had gone to SSS wanting to turn things around. Now all I wanted to do was turn around & pretend I had never been there.

What Dr. Bowtie never listened to, although he heard it because he was told repeatedly, was that I never intended to need help here. The reason why I chose this school was because I wouldn’t need help; that is until they tore up the whole campus to the point where they stopped shuttle service for the year & didn’t bother to notify anybody.

I had done what every other self-respecting prospective freshman had done the year before, right down to the student led campus tour. The only exception was that my mother was the one in the tour group with the obnoxious notepad, which I’m pretty sure she filled at least half of. This was the 1st school I was visiting out of the 6 I was applying to. It was going to be a long experience.

Only to be rewarded with this kind of treatment.

I don’t remember much of the meeting these days. But I could barely remember it a week later as well. I was so angry with how things were going I think my brain just shut down & went into self-preservation mode.

I know he made a plan which involved me moving into another dorm as soon as another room became available. He didn’t even ask me if I wanted to move, he just assumed I would. My room was far from the nicest thing on campus & the location did suck, but I actually got along with my roommate so I didn’t want to mess that up. Once I was told the possibility of both of us moving wasn’t an option I wasn’t moving.

Another point to the plan was to move all of my classes, into one building if at all possible. I later found out this wasn’t because my classes would mostly be in the arts building which was already full to the gills with 3 departments (we occasionally had department meeting in the lobby spilling into the hallway) so naturally putting Freshman Composition in there too totally makes sense.

I really wasn’t the biggest fan of this idea either. I had had a doctor write a letter to the housing department with my admission paperwork asking that my classes and room be on lower floors in the event of an emergency. Everything was. Case closed. Also my classes were scheduled with at least an hour to spare but two or three between classes was more common, by sheer luck. If my classes were all in the same building was I supposed to just sit in the building all day? Can we all say dull?

Should I even bother to point out how much of a disturbance that would create for just one student? I had a feeling that they would try to keep this as quiet as possible. But I also knew word would get out, or people would just put it all together, and figure out I was the cause of all the upheaval. It wasn’t going to make my time at college better; it would blow it all to hell. I made it to October. I could make it to December and reevaluate for January.

This hardly seemed like the reasonable accommodations the Americans With Disabilities Act was aiming for. I had made it 18 years with very little help. There was no way I was going to let it all go now, and certainly not like this.

Besides who goes into something knowing they’ll need a lot of extra help. Isn’t the idea to blend in? If you need a lot of extra help isn’t that a sign that this situation may not be the best for you? I don’t get up in the morning and consider how much the world owes me just to be able to do what I want. Life doesn’t work that way, but for some reason I think Dr. Bowtie had other ideas. I just couldn’t figure out if it was coming from his head or through interacting with so many other students though his career.

Wherever all of this was rooted in wasn’t for me.
If I was going to turn this whole thing around I had to do it myself.

What I’ve learned from this experience is that just because it’s labeled as help doesn’t mean it actually is.

I never went back to that office.
Never returned a phone call from them.
I ignored they were there.

But I wasn’t done after all.

And so help me God I wasn’t going to be their kind of special.

*A similar version of this post first appeared on an old blog on March 13, 2012

Why I Remain Catholic

Maria Johnson suggested that those who attended her mastermind group at CNMC15, which I did, (in spite of the fact that I really wanted to run far away and hide until lunchtime) take on the challenge of answering, “Why do you remain Catholic?” which was asked by Elizabeth Scalia.

Why do I remain Catholic?

It’s one of those questions I’m always asking myself because there are plenty of reasons why I could (and probably should) walk away and never look back.

In fact I have walked away from the Church for at least a decade; actually looking back I wonder if I was ever “with” the Church until my 20s.

I’m a cradle Catholic but not a good one. I can’t even remember if I went to mass every Sunday growing up. I want to say yes, but I’m honestly not sure.

Regardless I went through the motions because I didn’t really understand any of it. There are a lot of people I could blame for that but I’m not going to, because what’s the point in doing that now.

In 5th grade I switched schools, to a Catholic school, and it all went downhill from there (to put in very nicely). It didn’t take me very long to figure out that if this was how Catholics acted I wanted no part of it.

In fact I went the extra mile and decided there was no God; because if God was in any way like anyone in my school I wanted none of that either.

Catholic schooling made me an atheist. I’m sure I’m not the only member of this group; however I may be one of the few that wondered back into the fold.

However I’m still not a fan of Catholic schooling, until the college and grad/post grad level. But that’s another post for another day.

So, why am I Catholic after being so severely scarred by Catholics (and the Catholic Church)?

The short answer is because I came to the realization that you can’t point out something that the Church can and should be doing better and just leave.

The first time I tried to change the Church I was in college (undergrad) and I decided I would focus all of my independent research on incorporating more art into catechesis. Because people just couldn’t wrap their minds around the idea that a Drama major would have even the slightest interest in theology and the Church.

It would’ve been easy to drop my research, maybe change my major and/or minor, and walk away from the Church (again).

In fact I was told to change my research, my major, and minor by several people (some of whom I respected highly and considered to be mentors) which could’ve caused me to walk away from the Church.

But I didn’t. In hindsight, I still can’t tell you if I was being stubborn or stupid or both.

I took a break from pursuing changing Catechesis as we know it, since 7 years of being a hardcore drama geek was slightly draining, and my (next, or real?) vocation fell into my lap.

After my latest surgery I had to pay attention to things I’d always struggled with but made due. The difference post-op was there was no “making do,” unless that meant never leaving the house, and even staying in home 24/7 required help.

Stairs and no ramp? Need to get someone to lift and carry me up the stairs, for example (and it really takes two people).

Where are the handicapped parking spaces? Are they clear of snow/debris/other cars?

The list goes on and on.

At some point a friend asked me if I was going to mass on Sunday. I told her “no” because parking was a pain and there was no place for me to be without being in everyone’s way during mass, of the subject of their pity stares and comments.

We talked about other options.

Going to another parish? It’s highly likely that I’d have the same issues just in a different location.

The Anointing of the Sick? A nice thought, but disability isn’t an illness that I need to get over. Yes, in this instance I was recovering but that wasn’t keeping me from attending mass, lack of basic access and a feeling of acceptance was. I wasn’t going to take up a ministers time just because I there wasn’t somewhere for me to sit safely during mass.

Eventually I went to the internet for answers (like most people do these days). I discovered that religious institutions, like the Catholic Church, are exempt from complying with the ADA.

However there were religious institutions that have complied with the ADA.

So why wasn’t/isn’t the Catholic Church one of them?

“Catholics are bad at tithing.”

“We don’t have the money.”

“We don’t have to comply with the ADA”

“We don’t have any disabled people who come to our church.”

“Complying with the ADA would destroy our building.”

“Catholics have the Anointing of the Sick for those who can’t attend mass.”

“We’re accessible; we just have a few stairs.”

“We have awareness services once a month.”

The list could go on and on.

Although these reasons appear to be completely valid reasons, and a true reality for a number of parishes, there are really just copouts to so many people with disabilities.

Attitudes need to change. The Catholic Church (as well as other faiths) needs to be more inclusive to the largest minority on the planet, because in the end everyone will suffer for it.

Why do I remain Catholic? Because nothing is perfect and no one is perfect and walking away because that’s the honest truth is just asinine, in my humble opinion. If you want change so badly then it’s a good idea to be part of that making that change, if not, sit down and shut up because you’re just complaining to hear yourself talk.

On The ADA Anniversary

This week (this upcoming Sunday) 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 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

I Went To Mass

For the fall 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 I reconsidered (mainly because everyone knows my intentions in working towards a Master’s Degree and trying to bow out of the assignment would go against that).

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, especially if you consider that I don’t even feel very welcomed and accepted at my local parish.

*A similar version of this post was written on December 17, 2014

This Is My Vocation

At the last Catholic New Media Conference Pat Padley showed snapshots of the Vatican’s (Catholic) website in comparison to The Church of Jesus Christ Of Latter-Day Saints’ (Mormon) website.

The Mormon’s are kicking our ass again, I thought.

My brain was well on its way of solidifying the fact that I should at least attempt to apply to grad school, whether I’d get in was doubtful (or so I thought), but I had to try anyway.

I wasn’t always that into Catholicism. In fact I wanted as little contact with anyone who called themselves Catholic as possible. It wasn’t until I tried embracing my own Catholic-ness I was willing to admit why I hated it for so long in the 1st place.

I felt like an outsider in addition to being treated like an outsider. Any scripture I read in regards to possible disability is always accompanied with ideas of sins of the parents or bad spirits and what have you. Combined that with the fact that I was treated like a leper by both students and teachers during my 1st experience in Catholic schooling, well I think you get the idea. Clearly they didn’t see a place for me, so why should I expect there to be a place for me?

The wounds are still there. I’m not sure they’ll ever heal. However I’ve come to the realization that if I want the Catholic Church to do better, and in my opinion it needs to, it’s better to be a part of it than sit on the sidelines and make comments about what should be done & how.

A few weeks ago I was reminded of another reason why I needed to part of the solution.

I’m not the biggest fan of awareness months (1) because there’s so many to remember, (2) who decides what gets what month, (3) if it’s really worthy of awareness than it shouldn’t be limited to 28-31 days. However when one community decides to dedicate a month that’s something truly unique and similar communities should take note (and maybe follow suit).

I’m tired of the Catholic Church not leading the way when it comes to matters that effect major minorities, like the disability community (obviously). Whenever I’ve asked why parishes aren’t accessible (and I’m not just talking physically) the answers don’t really surprise me anymore.

“We don’t have anyone with a disability that comes here.”

“We’re exempt from the ADA.”

“We can’t afford it.”

“Making the building accessible will ruin the history of the building.”

No offence to anyone who genuinely believes these reasons but they’re pretty shallow.

Maybe people have stopped coming because you’re not accessible. Or maybe they don’t bother coming because they know they’ll have problems.

You don’t have to comply with the ADA however; don’t you want to do better than the bare minimum of the law? You may be exempt, but you’re still encouraged to comply.

If you ask for specific funds you just might get them.

You can make modifications without needing to dismantle and entire building.

It’s time to stop making excuses and be inclusive to all. That’s what Jesus would do, don’t you think?

Long story short, this is my vocation, it chose me. (Aren’t I lucky?)