Wow, you are talking to me like a person.

Animal of Bitch and Animal

So, this is another story of people who do it right. When I was like 18, I loved (and still like) a two-woman band called Bitch and Animal.

I had all their music and listened to them all the time (which probably drove my parents crazy). They played shows in my city a few times and of course, like any rabid fan, I went. The shows were usually in a tiny club or whatever. One thing you should know is I'm not shy so when the show was over, I literally knocked over chairs to go meet them with my aide cracking up following me. When I got Animal's attention (and when my aide caught up with me) my aide said "This is Eva and she really wants to meet you." Now in retrospect, I had no idea how Animal would react (would she baby talk me, get freaked out, or what?). I was so excited to meet her that this was the last thing on my mind when I plowed my way over. But she excitedly said "Hey Eva, nice to meet you. Did you like the show?," and WAITED for me to nod or shake my head. We chatted for a few minutes, each time she phrased the question in a 'yes' or 'no' style. My aide just stood there because she was not needed. There was no need for my aide to even explain me not talking.

You might be thinking "So what?" But for me this was a really big deal to meet someone (let alone someone I was a big fan of) that was so comfortable and casual right off the bat. 99% of the people I meet for the first time have at least some hesitation with me and my aides have to explain why I don't talk back etc. Explaining is obviously not a big deal but its sooooo nice to meet that 1% that just get it! Its like you have to tell your whole life story to everyone you meet in one sentence. Let me be clear; I don't expect anyone to "just know". Asking is always good. Its just really cool when someone doesn't have to ask.

Animal and I are still friends and I'm sure it was partly because of this encounter.

"He's just like Stephen Hawkins!"

First I want to thank you for migrating to my new web address. I know that is kind of annoying.

Ok, story time. This happened about 8 months ago. My aide and I were at a Starbucks just after a photography lesson. We were waiting in line when this guy comes up to my aide and proclaims that "Your son is magnificent!" (God knows why... I was just waiting in line.)
My aide replied, "Oh, well she's not my son. But thanks. And you can speak to her directly."
The man (not getting the pronoun hints)replied, "Steven Hawkins is the Einstein of our time! He is going to be just like Stephen Hawkins when he grows up!"
"Well she is 25 and has just graduated from college, so I guess she's on her way, haha (nervous laughter)."
Finally catching on that my aide kept saying "she" and that I wasn't a little kid, he realized that he might have offended me/ my looks. So to rectify this misunderstanding, he leaned in close, put his hand on my shoulder and said, "EVERYONE IS BEAUTIFUL IN THEIR OWN WAY"

Like everyone else, he meant well, but no need to comment on my physique or compare me to other disabled people, thanks anyway.

The waitress.

Boy do I have a good video for you. This is footage my friend Liza took when she was doing a documentary about me. Me and my aide at the time, Kat, were in Virgina at a CP conference. It was one hour before I was supposed to give a speech and we decided to grab some food. When...



http://www.youtube.com/watch?v=f7uATf6y68Y

Where to start? I know she meant well. She was a super nice person and just wanted to help. But I draw the line at trying to help me drink. She wouldn't let us eat! I doubt she tries to feed other adults, and I'm sure even parents would be mad if she tried to feed their children. She also hovered around the whole time we were eating.

Lets talk about the beautiful sippy cup. As a 24-year-old (which I was at the time) wouldn't you think that if I wanted a sippy cup I would have asked for one? I appreciate that she was trying to make it easier and I know I said yes so that she wouldn't feel awkward, but offering a 24 year old a kids cup is just weird.

Her last comment really bugged me, "I want you to FEEL BETTER!" That automatically implies that having a disability means you're sick and you need to get better. My disability is just part of who I am, and in fact, I'm a very healthy person.

As for my aide's somewhat timid responses, I generally prefer them not to cause a scene. And from their point of view, it's really awkward to try and correct people, particularly when it totally comes from left field. Not to mention the woman was really sweet, and no one wants to make her feel bad. The best thing we can do is get amusement out of it.

See, I told you it was a great video!

Wish I brought my video camera....

Ok, I thought I was going to wait for a video (my friend is giving me a good one) until I posted again. But then this gem happened.

Let me start off by saying that I work as a dog walker. Which basically means me and my aide go to a client's house and I chill outside while my aide gets the dog (there are usually steps in the house). My aide then straps the leash to my chair and we go on our way.

Today when I was waiting outside for my aide to bring down the dog, this woman appeared out of nowhere and asked me "Do you need to get up there?" (there meaning up huge flight of stairs). I shook my head "No" (I do this very exaggerated with new people/strangers so they get it). I hoped she would go on her way, but being a concerned citizen she said "You shouldn't be in the middle of the road!" For the record, I was on the shoulder of a very quiet road. I just looked at her. Then she grabbed on to the handles on my chair and said, "Lets go to the park," (there's a park on the other side of the street) . She then proceeded to try and push me in my 300lb motorized wheelchair (which would not have budged). I, getting sick of her, just wheeled myself over to the other side, with her in the back thinking she was pushing it. My aide came down and heard me laughing hysterically. The woman just said, "Oh, are you here for him?"

"Uhh yeaaaah??" my aide replied, very confused by the situation.

"Oh, I saw him in the middle of the road so I moved him!"

"Ok....?"

And then the kicker, she said in a very serious tone, "What's wrong with your little boy?"

My aide replied, "There is nothing wrong with her. She has Cerebral Palsy and is in a wheelchair. She can't talk but she understands and fully capable."

Apparently overwhelmed by her good deed, she said, "Oh well he just loved it when I was wheelin' him to the other side. He was laughing and smiling!"

"Uh, Huh. Well we're dogwalkers, sooooo she waits for me."

And then my aide tied the leash to my chair and we took off as she gave me a BIG special wave. I was cracking up. Now I know that lady was doing what she thought was a wonderful thing to do, but this is a prime example of treating people with disabilities as kids. She should have backed off when I gave her the signal I was fine. I have a power wheelchair and if I wanted to move it, I could.

You might be asking yourself, "Well, what do I do if I see a disabled person that might be in trouble?" While our friend here initially did the right thing, which is ask the person, she didn't listen or look for an answer. Even if you don't understand their response (which is totally understandable) you can ask them to show you a 'yes' and show you a 'no'. If you totally can not understand them or decipher their style of communication, its okay to say,"Hey I'm sorry but I don't understand your method of communication. I am going to hang out next to you until someone comes or I know you're good, hope you don't mind."

Here's another tip, there are certain things you can look for that will tell you if this a person that has accidentally wandered out into the street, or is this a person perfectly content to hang out by themselves. For example, my chair is covered in stickers that say things like "Well behaved women rarely make history," etc. This should tell you that I am most likely an adult feminist woman and not a little boy.

My next post is going to be really really good!

People who do it right.

So I have gotten a lot of great comments and emails in the past few days, many of which have posed the question "So Eva, what do I do?" So I am going to tell you a story about people who do it right.

Before it closed (so sad) I used to always go to a place called Highland Grounds

.

(yes, there is a step there but they also had an accessible entrance too) I loved their food, atmosphere, etc. As I kept showing up, the waitresses became more and more comfortable with me. One day the manager walked up and said "Eva, can you show me how I can communicate with you?" So my aide gave a little explanation and we tried it out. She gradually brought every waitress over to see the demonstration. So eventually I could just roll in and order myself. They didn't make a huge deal out of it and the desire to learn was absolutely sincere. It was just like learning my communication was the next obvious step since I came there so much. This might not seem like a big deal to you but to me it meant that they saw me as a person worth speaking to and not just 'that disabled girl'.

The difference between this and what the barista did was enormous. Now, the barista was being nice and this was the first time she'd seen me and I understand that she didn't have time to get to know me, so I will give her that. But talking to me that way at our first meeting is like when someone yells "HI! HOW ARE YOU!" to a deaf person. Its instinct but you've got to get over it.

I hope this story helps.

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.