It's like she read my blog!

So I was waiting for my aide to bring down my next dog for a dog walking session and and a car pulled up and a woman walked out toward me. I honestly thought, "Oh crap, here we go."

She said, "Hey, do you need any help or anything?"

I shook my head.

She replied, "Is someone with you?"

I nodded.

She said, "Okay then, my name is Molly. I've seen you around and though I'd introduce myself. What's your name?"

We then had a brief few second of me thinking "Oh crap, I can't answer" until my aide came down and said, oh this is Eva the dogwalker.

The juxtaposition between this exchange and the one I had a few weeks ago is enormous. Not only did she listen to me when I nodded and shook my head, she proceeded to have a normal conversation with me. Wow!!!

Share your stories!

Hey everyone, I just created a forum for others to share their own stories of mistreatment, being bothered in public, or dealing with unfortunate people. The link is:

http://thedealwithdisabilityforum.ning.com/

And I am going to put it on my side bar as well. I look forward to reading your entertaining posts!

Don't spit out Jesus Christ!

Before I tell you what my subject line means, you might notice I have books from Amazon on my page's sidebar. I chose these books because, well...they're awesome. Exile and Pride is an awesome bio/discussion of disability and gender identity. The Ultimate Guide to Sex and Disability is exactly what it sounds like (wink wink). And I actually know the writer of Beyond Victims and Villains. She is a disabled actor and director and has produced many plays by and about people with disabilities.

So I went back to Cleveland, Ohio for the wedding of my favorite aunt. My dad's family is cool but kind of religious. By "kind of" religious, I mean compared to me and I'm not religious at all, but not like the going to church every week type. My dad is not religious at all but he grew up in a Catholic family of 13 children. But is was a wedding and weddings are usually held in church (which is cool with me).

Anyway, I was siting up front (they had accessible seating in front) enjoying the wedding when it was time for communion. My whole family lined up while my mom, dad and I just waited in our seats.

Now I have to explain somethings. Because of my CP, my mouth is open a lot (not like widddde open, but open). And also because of my CP, my tongue sometimes also pushes out my food. Both of these things are not a huge deal and I don't even think about it normally.

So, the priest seeing that I sitting in the pew with my mouth open, just shoved in a host wafer. My dad leaned over and said "Eva, whatever you do, don't spit it out," while my grandma did a "Hallelujah!" My aunt, whose wedding it was, was cracking up because she knew I was not religious and there was a big possibility I would spit out the sacrament.

I did not spit out the wafer. But it was so funny and I have a great first communion story. The priest was not being a jerk at all, but he definitely did not give me a chance to decline. I think he just saw an open mouth and went for it. Anyway, hope you enjoyed this story.

Sometimes accessibilty is more than meets the eye

Hey everyone, I have a video for you. I am going around, handing out brochures for my dog walking business. This means going to different vets offices and asking them if its okay to set up some flyers. These places are not the usual places I go, so there is always a question of if I can get in. Watch this (the person was not blurred in this case because I found her particularly polite):

Granted, I didn't call first and ask about accessibility. But sometimes even if I do call in and they say yes, I get there to find that's not the case. There is sometimes like one step or something. Another example is when my family and I went on vacation one year. We’re old hats at traveling and we always call first to make sure I can get in everywhere. However, when we got to the hotel (which was supposed to be accessible) there were 3 steps leading up to our room.

Most people think accessibility means ramps and being able to get into the main building without scaling flights of stairs. People don’t consider “is the bathroom accessible” or “are the tables placed too close together so that a wheelchair wouldn’t be able to get by”. I know able-bodied people don’t get practice thinking about these questions. But it’s really frustrating getting somewhere and finding out there’s no way in or no way to maneuver around. ESPECIALLY when I am with a big group and now we all have to go somewhere else. And I am just discussing mobility barriers. Other disabilities like vision and hearing impairments or sensitivity to fragrance or things like that have a whole other set of problems.

One cool story about some place adapting to my needs is my old hairdresser. She shared her shop with her husband who was a tattoo artist. The problem was her part of the shop was up a huuuge flight of stairs. Rather than saying, “Sorry but no can do,” she brought all of her supplies down and gave me a hair cut in his tattoo parlor. Adaptations don’t have to be major sometimes. Sometimes you can work with the person.

Am I not independent?

Hey, so a little housekeeping before I go into my fabulous story. I put a subscription by email box on the side bar so you can get notification when I post something new.

So I was at yet another technology fair for people with disabilities. I was cruising around with my aide when suddenly I got stopped by a guy with cerebral palsy who worked for Dynovox (he used a Dynovox himself). I should let able-bodies know that Dynovox is a company that makes augmentative communications devices or AAC's-think Stephen Hawkins's voice. He asked me if I was interested in getting a Dynovox and I shook my head no (my board was in my backpack). He then asked me why I didn't want one. I signaled to my aide to get my board and the following conversation ensued:

"I like my letter board."

"Don't you want your own voice?"

"My board is my voice."

"But you're not independent. You have to rely on people to read it."

"I don't think that makes me less independent because I always need full time assistants to accompany me in public. So they can read out the board and the conversation has a better flow."

"But you are dependent on them."

"I don't see it that way."

He was stumped and gave up , but not before giving me a disapproving look. The topper was, as soon as he rolled away he summoned his aide to help him drink -after lecturing me about being independent.

There are two reasons I told you this. The first is it's funny and it shows that even people with disabilites can discriminate against each other. The second is because many of you have asked me (in a much nicer way) why I do not have an AAC device. You are probably thinking that it would make life so much easier because I could tell people off directly, show them I'm smart, and not rely on others to translate for me. However, partly because of how I would have to use one of those AAC devices (with an infrared sensor) it would take me about 5 minutes to type out a sentence. That would either make people leave because they don't realize that I'm about to say something, or be so in awe of the technology that they don't really hear what I have to say.

Another view I have encountered (from both the disabled and non-disabled) is that people assume that since I don't use an AAC, I must be lazy or too dumb to operate one. I have actually learned how to use one but it did not feel right to me. I was 14 and my dad insisted that I learn to use one (he actually paid me!- a great way to get a teenager to do something). However, he was pretty surprised when I refused to take it with me on the first day of school that year.

My board is so much better for me because of a few reasons. First, it's extremely portable and you can make one on a whim if need be. Second, it doesn't have technical problems- I know a few people whose AAC device broke and they could not communicate for a few days. Finally, and most importantly, my board gets people to get to know me rather than just ooooing and ahhhing at the technology. It's very interactive and any literate person can learn it in like 2 minutes. Even if someone is having trouble reading the board (and this happens frequently at first), my aide can always be there to translate.

I know some people have great success with AAC devices and I am in no way bashing those that choose to use them. This is just what works best for me. I hope this explains your wonderings.

For those who have not seen it, I posted a video of me using the board on my very first entry. Here is a link: http://thedealwithdisability.blogspot.com/2009/08/hi-and-welcome-to-deal-with-disability.html