Other Than That Mrs. Lincoln

Have you ever heard someone say, “Other than that Mrs. Lincoln how was the play?” It’s been in my head for at least a week. I’m sure this saying has a few different meanings. In my life it roughly translates to, “Was there anything good that happened?”

I try to put a positive spin on most topics I write about. There are so many negative things out there on people with disabilities so I try to be positive, however being honest & positive don’t always go well together.

I’m not licensed to drive. It’s not something I like to talk about. It’s been the sorest of sore spots. I wrote that post early so I’d publish it & when I did I wanted to vomit. I didn’t want people to think I was a quitter. I hate being seen as a quitter, even when I do.

As freaked out as I was to admit that I can’t drive I knew I’d have to admit it to people, outside of my circle of everyday life. To be quite honest I was getting tired of coming up with ways to avoid answering the question.

As comments, tweets, and other forms of feedback rolled in I waited for the backlash.

The backlash that said I was alone.

As alone as I felt in my experience I found out I wasn’t alone in my feelings of injustice. It’s been really nice to have so much support, most of which has been from people I’ve known for less than a week.

I wanted a conversation to happen, and now it’s happening. I couldn’t ask for much more in terms of success. Although I’d be lying if I said I’m not still waiting for the proverbial other shoe to drop on this one.

I’m not a known travel blogger or mobility specialist. Taking about 2 less than ideal situations involving two sometimes complicated topics isn’t ideal, at least for me, considering my history of needing to occasionally pry my foot out of my mouth.

I wanted to wait on talking about my latest airline adventure. The last thing I want to do is to start trouble, at least for the most part, so taking on an airline wasn’t something I wanted to do. However this situation seemed so bizarre that I had to share it. It fell under the category of, “If it happened once, it’ll happen again, if it hasn’t already.”

I didn’t wait because I had actually written a good portion of the post before I got it together enough to talk about the driving subject. Since most of the work was done I published it, no sense putting it off, and I had nothing else waiting in the wings.

Let’s not forget about that time I brought up some of the faults I’ve found in the Catholic Church as of late, that’s always a winner. But with a new pope I thought I’d have a better chance at pulling it off now instead of a year from now.

And all this after CP Awareness Month & the WEGO challenge.

As risky as my recent blogging behavior has been there have been some pretty great payoffs, the biggest ones have been emotional & psychological, but it hasn’t stopped there.

Well, other than that Mrs. Lincoln, the play’s been pretty great.

That Time They Forgot I Was On The Plane

I’ve been catching up on Handicap This! webisodes I spent the first 2 weeks of May preparing to travel, traveling, and then recovering from the travel; so watching webisode #13, titled “US-Careways,” seemed very appropriate.

Feel free to watch before you continue reading.

My experiences traveling are different than Mike’s although there are enough similarities to relate.

Here’s the thing about traveling with a disability (from my experience), no experience is ever the same; even with something as standard as TS@ procedures.

I have family settling in North Carolina (with Florida being a close 2^nd) faster than should probably be allowed. I needed to figure out streamlining my air travel to anywhere in North Carolina or else my wallet would continue to be emptied in BWI out of sheer boredom.

There’s also the matter of traveling from point A (my home) to point B (North Carolina) could take anywhere from a 2 hour flight to an 8 hour day (if more than 1 flight & layovers are involved).

I got lucky when I remembered that Charlotte is a hub for a major airline (you can probably guess the airline that shall remain nameless) & my cousin agreed to let me be her family 3^rd wheel for a few days.

At least I thought I was lucky (see: title of this post).

I did everything possible to prepare airline staff of my needs. I told them what I needed & asked questions for further clarification. I got nervous when I boarded the aircraft; due to its size, but sitting by the window helped. I slept the entire flight thinking I was in the clear.

I like to sit towards the back of the aircraft for two reasons, it’s easier on my spine & the grounds crew needs time to retrieve my wheelchair, sitting towards the back allows them to do this without agitating me.

 As I approached the door of the aircraft to deplane I caught the eye of one of the flight attendants.

“Oh no. We forgot you were onboard. Will you need a ramp?”   

 You what? Will I what?

I look out the door to see a flight of airplane stairs & they’re steep.

I guess that’s what that ‘do not walk behind the wings of the aircraft’ warning was all about. And come to think about it no one asked about whether I’d need assistance upon arrival.

Now I know to bring it up before leaving the departure gate before boarding……

I was tempted to ask the flight attendant just how she thought they’d set up a ramp safely now that half the plane was empty and the other half were waiting, but I held my tongue. I told the person I was traveling with (another cousin) to go in front of me so I would have a better grasp on spatial awareness (by looking at her shoulders instead of the stairs).

I made it down the stairs & I looked for my wheelchair, which was placed (brakes on, to my surprise) in front of the wing, just barely.

While waiting for my luggage to be unloaded I snapped a picture of the plane to send to friends & family, with not so comical commentary, to let them know we had arrived safely. Not long, maybe 3 seconds, after I press send I start getting replies.

“How did you make it down the stairs?”

“Didn’t you tell someone you needed help?”

“What if you couldn’t walk?”

The last question was the one that really got to me. I’m fortunate that I have good enough mobility that I can make do when unexpected situations arise. As unpleasant as being a forgotten passenger was the situation could’ve been worse. I could’ve been stuck on the plane until they got the ramp, however that would’ve happened.

Getting into the terminal was another challenge. I was told, and I’ve also read, beforehand that the Charlotte airport is going though major renovations. I hope this is true, because if things stay as they were a few weeks ago the accessibility is pretty terrible.

I hope that eventually, meaning sooner rather than later, that every flight can be given a jet-way that leads straight into the terminal so stairs and/or the need for additional ramps isn’t even a thought.

I’ll probably use the airline & the airport again. It wouldn’t be my first choice. If there is a next time, for whatever reason, I’ll be better prepared. I hope the airline will be as well.

When I’ve retold my experience to others they’re shocked that the flight crew forgot I was on board. It wasn’t the first time it’s happened & it probably won’t be the last. I do my best to express my needs and concerns to who needs to know, and maybe a few who don’t. That’s all I can do. But that doesn’t make it suck any less.

Do you have any interesting travel stories?

Why I: Don’t Drive

Andi wanted to know, “Do you drive?”

I kind of gave away the answer in the title, keep reading anyway.

Typically this is one of the few questions I don’t like to answer. In an effort to avoid answering it I dance around the answer like I’m an Irish dance champion. It’s one of those things that I’ve been lectured on so many times that I just don’t want to hear it from another person (or from the same person again).

As they say, timing is everything so I’m up for answering publicly because it came at a good time.

I don’t drive not because I can’t; because of the bureaucracy involved in getting a license if you have a disability (which varies by state).

I’ve been though Driver’s Ed (required by my state if you have a disability). I’ve had a diving evaluation (required by the state). I’ve had a few road lessons from a state appointed instructor (required again).

The last part is where the train went off the tracks.

The instructor assigned to me (there were 2 at the time) was quite honestly one of; if not the worst people I have ever met in my entire life. I tried to just suck it up thinking that this wouldn’t last forever, required road instruction for a non disabled person is roughly 10 hours, so I was thinking 10 hours and I could take the test.

According to her I’d need 200 hours (give or take a few) before I was ready for my road test, and even then she couldn’t guarantee that I would pass. Did I mention that she told me this after my 1^st full lesson? (She cut the 1^st one short)

I thought this was a little suspicious so I made some calls while I continued with lessons. Her attitude, and by extension mine, didn’t get any better, and caused me to get increasing agitated.

One week I told her I’d have to reschedule my lesson for the following week because I had to prepare for a final exam.

“Well you need to make a decision. Which is more important to you? Getting your license or school? If you choose school and keep canceling lessons you’ll have to go back on the waiting list”

 I (more calmly than she deserved) explained that I wasn’t canceling, that I didn’t want to cancel. I wanted to reschedule. Getting my license & my education are equally important (especially because I was 2 years behind my peers in getting my license, thanks to the waiting list, and I was  hoping for a scholarship the next year to ease the financial burden of school.

I could not reschedule. I had to cancel my lesson for the next week and wait for my lesson the week after.

I went back to my room and considered my options, after venting to a few people.

“She’s supposed to help you get your license. It seems like she’s doing anything but that.”

 I made a call to my assigned instructor’s supervisor. I was told she was incorrect about the rescheduling and he’d have a talk with her about my experiences. I could be assigned to the other instructor if that would make me more comfortable. I was also told I was welcome to file a formal complaint if I so chose.

Fast-forward a few weeks and the adaptive diving instructor supervisor & the other instructor were laid off due to state budget cuts.

I called the adaptive driving department at DMV headquarters & told them to put a hold on my file.

I’m not one to back down easily but I had to draw the line on the mental abuse the instructor caused (I call it abuse because I have no idea what else to call it). The whole system was biased & I refused to be a part of it. It’s not worth it to me.

I’ve gone back periodically to check on the situation but things haven’t gotten any better, in fact they may have actually gotten worse. Since the supervisor I originally spoke to isn’t with the department anymore I went forward with filing a formal complaint with the next supervisor (and every supervisor that’s followed).

I’ve pretty much given up on getting an acknowledgement of my complain(s) never mind a resolution. (Let’s not even get into the chances of an actual apology, no matter how hollow)

I won’t say I’ve given up being able to drive altogether. I’ve just tabled the project, at least for now. (However I wouldn’t turn down any leads that may prove promising if anyone out there knows of any)

Why don’t you get your license in another state?

I’ve seriously considered it, believe me. I’ve also lived in different states so it would be a real possibility, if I had access to a vehicle when I lived in another state. I’ve also considered taking lessons in a neighboring state but you need to be a resident in order to do so, and their diver certification process is pretty similar to my current residential state.

“Do you need any special accommodations/modifications or can you drive a standard car just fine?”

 I wouldn’t be able to drive a standard car (meaning standard vs. automatic). I would drive an automatic car with hand controls, which I’m told is “impossible” on a standard (manual transmission). I learned to drive with hand controls, with the few lessons I’ve had, so it’s how I’m most comfortable.

Initially there was some concern over my startle reflex and how it could effect my ability to drive a car in the traditionally so “we” (the DVM people) opted for a hand control option. I just wanted to drive so I went with it.

Not everyone with CP needs adaptations to drive. I recently met another individual with SDCP in their late 30s who drives like able bodied individuals (I’ve heard of others as well) so there is no one size fits all when it comes to driving.

After having a few lessons I realized that my height (or lack of) should’ve been taken into consideration as well. Using hand controls allows me to sit further from the steering wheel. If I were to use petals I’d have to basically sit with my chest more or less resting on the steering wheel, an unsafe situation if I were to ever get an accident (the airbag would probably cause additional injury as well).

Hand controls are the only modifications I would “need” but I have a few others on my wish list, depending on the vehicle.

It should also be noted that hand controls are not one size fits all. This is where attending the Abilities Expo helps! I have an idea of which hand controls I like best, but it’s something you have to look into based on needs, availability, and other factors.

Do you have a question you’d like me to answer? Leave a comment or fill out the contact form.

Aren’t You Inspired?

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.

Why I: Am Not Meant To Be A Catholic Blogger

I’ve had this post in mind since Benedict’s resignation. I don’t think I’m able to write it better now than a few months ago, but if I wait any longer I’m going to forget it altogether.

I found my first Catholic blog by accident. It wasn’t long before I thought I would be a good Catholic blogger too. At the time there weren’t many known Catholic bloggers, in fact many young adult Catholics were being told to stay away from internet Catholicism.

I thought I could be a voice for young adult Catholics like myself. It made perfect sense. The internet didn’t scare me & I had plenty of resources at my disposal (at least then). 

However it didn’t take me very long to figure out that I wouldn’t be good at it. I did compare myself to other Catholic bloggers, but that was only part of it. I just wouldn’t be good at it. I’m not meant to be a Jennifer, Arleen, Chelsea, or Sister Susan.

I don’t find God in church.

There was a time when I never went to mass at all. It wasn’t doing anything for me, except for filling me with rage & anger. Then there was a time when I went to mass daily. I have to do what works for me when it works for me. I can’t go to mass if I’m not feeling inspired to do so. Mass is a piece of the puzzle that makes up my faith life; it’s not the be all end all.

I struggle with modesty.

 It was a long standing debate between friends and me whether I was dressing modestly. In the end we decided that it was best to agree to disagree. I find wearing a dress to be incredibly uncomfortable, in fact I didn’t own anything that wasn’t pants for a long time. I don’t understand the obsession that modesty automatically means dress & immodest equals wearing a tank top. In wind a dress can blow & expose everything, pants don’t move. Tank tops are more complicated so let’s just leave it at I like to have all my bits and pieces covered.

The Church (or rather churches) isn’t accessible.

It’s true that it’s not accessible for people intellectually but that’s not the type of access I’m talking about here, although all types of access shouldn’t be ignored. Many people with disabilities can’t even get into a church to celebrate mass. It’s true that many churches have a handicapped row at the front of the church and it does provide a great deal of access for those who choose to use it. I however find a downside to it. I jokingly call it the “crippled and lame” section. Everyone wants to feel a part of the community. Putting people upfront, because it’s the only place there’s space, can make them feel like objects on display instead of being part of something. There’s also the issue of ramps & elevators…..  

The pro-life movement.

I consider myself to be pro-life personally but on a global stage pro-choice. I think the pro-life movement overshadows many of the other issues the Church should also be taking a stand on. I also feel like there’s a piece of the pro-life puzzle that’s missing. We shouldn’t be ignoring other issues for the sake of one.

A feeling of lack of understanding.

I’m guilty of this as well, so I’m going to attempt to treat lightly. One of the biggest reasons I turned my back on the Church was the lack of understanding (and even the desire to try to understand). People were too focused on trying to heal me and tell me I needed to be a better person. People are different and share and express their faith in different forms, even among Catholics

I don’t know the Rosary.

At one point I’m sure I knew it, but not anymore. Even more shameful, at least to some of you, every time I try to learn I miscount my Hail Marys and/or fall asleep in the process.

I can’t be a good leader if I’m not a good follower.

I can’t tell people how to be a Catholic if I’m figuring it out for myself.