The wheelchair is not empty!

So I don't have any new stories to tell- people have been shockingly cool. I thought I would tell you an old story. Let me preface this by saying that my college was awesome. 98% of my professors treated me like any other student- most learned to read my board so we could have conversations without an aide. However, I had to take a class for my major (so I couldn't drop it) and the professor was horrible. Now to be fair, nobody liked her. She rambled on and on about her personal life and often didn't discuss the assigned reading. But she ignored me completely. At the beginning of every semester I would privately meet with my professors to explain how I communicate, how I take tests, and just generally troubleshoot. For example, in my human anatomy class, there was a lot of hands on work with fake bones. Since I can't pick up the bones, my wonderful professor would show me on my body where the bones were. But even after multiple meetings with Professor Horrible where I showed her again and again how I communicate, she wouldn't talk directly to me, only to my aide. She would say, "Does Eva need more time on the paper?" My aide, in a faint attempt to get her to understand would turn her whole body away from the professor and would ask, "Eva, do you need more time?" Sadly Professor Horrible did not catch on. She wouldn't even look at me. Needless to say, I got practically nothing from that class. Loooooong semester.

Also, I just wrote an article for Disaboom on dog walking. Read it here.

"She drives her chair very well!"

I was interested in using the therapy pool at a nearby YMCA. On the phone they suggested that I should come in and have a tour with one of the specialists. I did just that. The specialist was a cheerful middle-aged woman who had one too many cups of coffee that morning. As usual, my aide did a two sentence explanation which goes something like, "She's got CP so she can't talk, but she can hear and knows what you're saying. I can decipher what she wants to say too so I'll speak for her but you can talk directly to her," etc. This sometimes works and sometimes doesn't. This was a case where it doesn't. So we three left for the tour and the woman kept commenting on how well I drove "just like a race car driver!" I looked at her like "thanks......". I wanted to talk to her about the logistics of going to the bathroom/changing/etc if I had male aide with me (I don't discriminate against gender when I hire). She acted pretty shocked that I would let a man see me naked. Although she talked to me, she directed all the important information to my aide even after my aide explained that I am a college graduate. Throughout the visit she was a little touchy feely, but right before I left I got the full experience. She grabbed me and hugged me and patted my head and was saying things like "It was sooo great to meet you!! You come back soon!" which looks nice on paper but sounded reaaally condescending at the time.

Oh YMCA, you are supposed to be cool about this stuff. Like everyone, she meant well but damn, it was annoying.

Diane Arbus is rolling in her grave.

Diane Arbus was a famous photographer who had a niche of taking photos of "outsiders". This includes circus people, and we're talking 1940's so think "bearded lady", "serpent man", "Siamese twins". She also has a huge interest in people with disabilities. She photographed them in a respectful light, not exploitative.



So me and my dad went to the MOCA (Museum of Contemporary Art) to see a retrospective exhibit of her career. I was really enjoying it until this happened.

My dad and I were looking at a photo of a group of people with Down's Syndrome (see image above). I should explain that I have little control over my mouth (hence the no talking) and so I tend to drool. Not a big deal for me, its just part of who I am. However, as we were looking at this beautiful photograph, a museum guard walked up to my dad and said (are you ready for this?) "She's slobbering....She's slobbering all over herself..."

The guard was frantic (I'm still not really sure why). My dad had a great comeback. He calmly said "Yes, I know she drools." Then we walked/rolled away.

Now there's a happy ending to this story. My dad wrote a letter (I was 12 at the time or else I would have done it myself) to everyone who sat on the board at the MOCA explaining what had taken place. The result was mandatory disability sensitivity training for all the employees and I got to have lunch with the head of the MOCA which I thought was pretty cool.

I'm sure the guard meant well, but damn. He could have chosen his words a little better.

Not a piece of furniture.

So I have a video for you. It's subtle. Lets see if you can figure out what's pissing me off:



http://www.youtube.com/watch?v=e4jVqYWJGwc

I know it seems like nothing, but I was trying to get by on the sidewalk and there was a table full of girls in the way. These girls were 16ish so not children.  I just sat there waiting for them to move their extra chair. None of them moved or looked at me. It was like I was invisible. Finally my aide moved the chair after it was obvious that they were not going to be of any use.  This annoyance is obviously not huge, but it happens many times a day. It gets old.

Now it seems like people either ignore me entirely or  get a little too close for comfort. There is rarely a "normal" encounter. By normal I mean just your standard "Oh, excuse me," or "Hi, how are you?" or even, "Would you like milk in your coffee?"  The funnier thing would be if people treated me like everyone else they might realise that I am indeed just like everyone else.

Hi, I'm a person too.

I have another video for you. Let me set the stage:

I needed to get more vitamins so I went to my local vitamin shop. When my aide and I arrived, we tried to find what we were looking for on our own, but when we couldn't, we waited at the register. The owner was helping another customer, which was fine. But he made eye-contact with my aide (just to acknowledge that he would be with her in a moment). But he didn't look at me or say anything to me. I mean NOTHING for a good 10 minutes. When he was done with the other person he approached my aide to help her (again, not me).  He then led my aide to the section that had what I needed. My aide was clear to say "SHE is looking for..." and "can you help US find..." but no response from him. When I paid...



http://www.youtube.com/watch?v=zZkLXvbReL4

As you can see, the only acknowledgement I got was a Big Special Wave right as I turned to leave.  Like I said in my previous post...for god sake, treat adults like adults.

Hopefully my next video will show a different aspect of people being insensitive. These are the kinds of things I get most commonly (seriously like everyday), and I know seeing the same thing over and over will get old.  But I'm taping everyday and if I get nothing, then I will just tell you another story about one of my past encounters.

Just trying to get my tea...

Ok folks, it's video time.  Just to initially explain some stuff, the faces are blurred just to protect the privacy of the people who appear. Since acting strangely is not specific to one person, I didn't want to be like  "Ha ha! Look at this person being an idiot!" because we have all probably done stupid things we would hate to see on camera. I have also added annotations for the hearing impaired  and to tell you what I am thinking during these interactions. Don't worry, you'll be able to tell my internal dialogue from when the other people are talking

Soooo. I was just getting my green tea lemonade from Starbucks when I had an encounter with the barista. Some of the writing might appear small, so if you're having trouble reading it, click on the video and it will take you to youtube where you can full screen it. Watch:



http://www.youtube.com/watch?v=gv-u2nUNhB4

Now let me explain. Many  MANY people think that I am a 10-year-old boy when they meet me. For the record, I am a 26-year-old female, but I am of small stature and I have a short hair cut. People almost always think my aides are my mom or dad besides the fact that some of them are actually younger than me.  Now our lovely barista asked me in a very condescending tone how I was then proceeded to tell me that I have a nice smile (for a boy). Now asking people how they are doing is great! But if you don't know the person your default tone should be how you would talk to an adult. Even if a person can't speak, looks like their 10, or seems cognitively disabled, its always best to go with the default tone.  You can also take cues from the people with them (if they have anyone with them). For example, if they are with someone who is having a normal conversation with them, then there you go. I know the barista had the best intentions, but let this be a lesson to all you able-bodied folks. Talk to adults as adults!