Tag Archives: disability

Look out!

As I’ve probably mentioned before, I am a caregiver for adults with disabilities on my breaks from school. I love my job more than anything! But I have to say, I have some of the craziest experiences at my job, and most of the time it’s got nothing to do with my individual, but rather ignorant members of society.

Case in point: the other day I was grocery shopping with my individual, and it was the most fun I’ve ever had grocery shopping in my entire life! As we’re wheeling through the deli aisle, we see two young kids, (maybe 6 and 4?) running around. As we approach, one of them says “look out, a wheelchair! Don’t let it hit you!” They run around, “dodging the wheelchair” and making exploding sounds.

I was taken aback, and certainly appalled. I looked to their mother, who was yakking on the phone and clearly not interested in educating her children on people with disabilities.

I didn’t say anything. My job is to be a caregiver, and when someone is rude or ignorant, the last thing I want to do is call them out on it and make a scene while I’m with my individual. My job is to redirect and hope that someone else (the parents, maybe?) will stand up and be an advocate. Sometimes it sucks because I want to advocate the hell out of people, but can’t.

Instead, I found myself rationalizing their response by thinking how cool it was that we were a major part of whatever imaginative plot the kids were making up.

“As we were sitting, wondering how we were going to escape the evil three headed deli monster, a wheelchair zoomed by, ridden by an awesome person and driven by her caregiver. ‘Look out!’ I said. ‘Don’t let it hit you!’

But I had no reason to fear. As they zoomed by, they swooped up my brother and I, saving us from the clutches of the three headed deli meat monster. ‘To the chopper!’ They exclaimed, as we rode off into the sunset.”

Hey, it’s all in a days work 🙂

12 days of my life since I last blogged

Wow! With all the craziness of the holidays and finals I realized it’s been a while since I updated everyone on the mundane details of my daily life!

Well, today’s your lucky day. You will receive those updates. And you will receive them in the words of a song:

On the 12 days since I last blogged my life has brought to me:

12 crazy (but awesome)
relatives
11 last minute assignments
10 daily coffees
9 all nighters
8 fits of laughter
7 fits of tics
6 fits in general
5 DOCTORS APPOINTMENTSSSS
4 hours of sleep a night
3 weeks without laundry (oops)
2 hospital visits
AND A SINGLE 4.0!!!!

Wait what? A 4.0? Is it voodoo or is my disgusting amount of hard work paying off?

Voodoo.

Ps: I know it’s been like 47 billion Days since I last blogged but that wouldn’t fit with the song. Soooooo

Well. That was insensitive…

So recently I was browsing one of my favorite websites and came across a post titled “BEST PUNS OF ALL TIME!!!” Or something similar. Now those of you who know me know that I love love LOVE PUNS! They’re like my favorite things ever.

The puns on the post were really good, and I hadn’t seen most of them before. I was enjoying myself until I got to this one:

“Don’t let an extra chromosome get you down!”

My heart sank. I don’t know how to express my feelings about this in words. I wasn’t angry, although I probably should have been. I just felt a deep disappointment that people would so casually joke about human beings.

But then I looked again, and considered something. Hadn’t I just laughed at the pun involving “a rabbi, a priest, and an astronaut?” Hadn’t I just laughed hysterically at a demeaning celebrity joke my friend told me? And I’m sure I laughed harder than I ever have at the “suburban white girl” joke I heard.

The pun about Down syndrome was wrong. It was insensitive and demeaning. But I think it was more demeaning to me because I am familiar with the stigma surrounding disability.

And it made me think: have the jokes I’ve made and laughed at hurt other people?

I’m glad I read that pun, because it served an important purpose. It Wasn’t the intended purpose,but it made me think about how words really can hurt.

I’d love to hear others’ thoughts on this!

A strongly worded letter

The past few months, as many of you know, i’ve experienced an upswing in symptoms.

Simultaneously, I’ve been harping on my apartment complex to come look at some scary looking who knows what in my bathroom vent.

Well, four days ago my friend came by and saw the scary looking stuff. He recognized it as black mold and the probable cause of many of my symptoms.

So, I submitted another maintenance request.

Nothing.

I told my dad about my frustrations, and he said he’d try and figure out something.

Fast forward to yesterday. At 9 am I get a knock at my door. It’s maintenance along with the manager of my apartment complex! FINALLY! What prompted you to come?

Oh? A strongly worded email from my father sent 20 minutes ago, including the words “seizure” “liability” and “health department?”

Sometimes that’s all it takes. Although next time, dad, I’d appreciate it if you don’t send the email at 8:30 in the morning!

Acts of kindness

I haven’t really had many friends in the past, but now that I am in college I’ve found that people are much more mature than before, and take the time to actually get to know me before they judge me.

WHAT?!

For the first time in my life, I feel popular. The other day in class, 2 people wanted to be my partner. Heck, I don’t think anyone has EVER asked me to be their partner. It was always me asking , and the answer was always “no.”

I’m still getting used to the fact that people want to be my friend without anything in return, and that when I ask if someone wants to hang out, I’m not burdening them.

The point was really driven home the other day at an APO meeting (the service fraternity I’m in.) The president of the club announced that they were considering partnering with the ASL club to learn sign language, because when I had a seizure I was trying to sign something and nobody understood. When she asked who was interested, every hand shot up.

I was so touched by their gesture that I didn’t have the heart to tell them that I don’t know sign language!

That darn word

First, let me introduce the purpose of this post:

I HATE the “r word.”

Now, to elaborate:

For those who don’t know, the r word refers to the word ” retarded.” I don’t understand why anyone would use it. It’s degrading, and unnecessary. It’s no longer the medical terminology, thanks to Rosa’s law in 2010, and if there’s any possibility of it hurting someone, why would you use it?

It’s really that simple. But I hear it all the time-and I’m a college student!

Let me tell you a little bit about myself- I’m a wimp. I avoid confrontation at ALL costs. I’d literally be the worst salesman in the world . Don’t get me wrong, I’m passionate and always speak my mind, but if someone disagrees with me, I’ll say “oh, yes, I totally agree.” Or “I could totally be wrong. Yep, you know what, I’m wrong.”

I can’t stick to my guns, because I don’t like arguments and I don’t like seeing people unhappy.

Which brings us to the original purpose of this post: the r word.

I hear it. And I cringe. And I open my mouth to say something…..

….and I shut it. I can’t do it. Despite how passionately I hate the r word and want to advocate the ‘@$& out of anyone who says it, I can’t. And it hurts that I can’t, because I know how much the word hurts, and it is my job to make people aware of it.

I tried it once. I heard an acquaintance say it like 4 times and when I called him out on it, he said “I didn’t say it.”

…”oh. Ok. My bad. Sorry.” The most awkward 30 seconds ensued and I CONVINCED myself that I was stupid and wrong when in reality, he had said the word- 4 TIMES!

Does anyone have any advice on how I can- to put it colloquially- “grow a pair?”

Minding my own business? Is it my business?

The other day one of my good friends posed a question- when you see someone in public who you think has Tourette’s- do you say something?

The first answer that comes to my mind is “are you crazy? Of course not! That’s none of my business!”

But I really want to ask. I really want to know that there’s somebody who understands.

So that poses the question- how do you ask?

“Hi sir, do you have Tourette’s?”

…nah

How about “Excuse me, you don’t know me but I KNOW YOU!”

….nope

Or this “at what age did you find out you have Tourette’s? Oh, 23? How old are you now? …..oh. 23.”

There’s just no good way to ask. And by this point, I have spent 20 minutes contemplating how to ask, and the person is gone. And I have realized how my desire to find someone who understands does not warrant inserting myself into someone else’s business….right?

But I still really want to ask 😦