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!
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I have to tell you, this blog is amazing. Really.
ReplyDeletePlease consider cross-posting at http://sexgenderbody.com. What you're writing about it is at the very core of the identity conversations we're having. It would also put your writing in front of many more readers.
Either way, you're doing a great job here. This site is on our google-reader.
-arvan
I shared this blog with some of my family and friends. Please keep posting! I think you seem like such a fun lady!
ReplyDeleteHey Eva,
ReplyDeleteI am DeNiece from the cerebral_palsy community on livejournal.com. That comment bugged me also at the end. It was completely disrepectful. And yes in the end all you can do is laugh because she was a nice waitress but all that hovering and especially that last comment would have really bugged me.
Thank you so much for posting this blog! You are giving me great insight. I appreciate your willingness to be so honest.
ReplyDeleteOn aside note… I am a 32 year old woman and I am constantly mistaken for a teenager. I understand your frustration. It's funny but sometimes being mistaken for a child means not getting the respect you deserve and after a while it gets old. People always say "you should be glad they think you are younger" but they don't understand how frustrating it can be sometimes. At a restaurant I often respond with "Bring me a booster seat and a beer". HA!
Once again thank you. I think there would be less discomfort in your life if more people were willing to discuss these types of situations more openly. I truly admire your honesty. It seems to me more people would rather not discuss and therefore those of us without disabilities are left in the dark.
I am guilty of the "special wave" and I feel awful rarr...
She meant well, but what the HELL! Yeah, sticking a wider straw down someone's throat when you don't know their swallowing-reflex status, particularly when you're being hysterically funny all up in their face at the same time, is always a good idea. *eyeroll*
ReplyDeleteMaybe she meant "feel better than you do when you're being handed kiddy cups and nagged about your food intake by a complete stranger," but I kind of doubt it.
Naw, "I hope you feel better" implies that you're not at the 100% mark. Which for you is admittedly different, but it's still going to happen all the time from people who know you won't reach their level of '100%'.
ReplyDelete.... But damn that waitress has a sexy accent.
And uuh, no one saying anything to her in the beginning would have encouraged her.
And remember, videos make people act different. So if the waitress new there was a camera there, it would have influenced her behavior.
P.S. YOU HAVE A DELIGHTFUL LAUGH.
ReplyDeletewow. Sarah, I really think you are missing the point.
ReplyDelete@Eva - I have linked your blog to as many friends as I have! Your blog is fantastic. What a weird mixture of feelings to see your patience and humor mixed with the incredible discomfort of watching the waitress.
Thank you for your posts!
OMG. Then whats the point? Don't leave something so open-ended! That'll drive me nuts. EXPLAIN YOURSELF!!
ReplyDeleteWhat am I missing? The waittress was trying to make things easier for her. And obviously isn't shy about trying to think of things that could potentially make her guests feel better, even if she was way off the mark.
But, it was funny how fair the waitress was willing to go. But some people are just so hands on! haha.
And Eva and her friend didn't bother saying anything to let the waittress know that she wasn't being helpful. So of course the waitress is going to leave thinking she did the right thing. But I mean, Eva already addressed not wanting to make her feel bad since she was so sweet. And about just taking the amusement from it. Which is a good attitude to have! I probably would have been rude myself though. But I'm obnoxious like that.
Eva - you are so funny! I don't know how you could eat or drink with that crazy lady hovering over you and making you laugh. Thanks so much for your enlightening blog - it really has opened my eyes. Also, you're just hilarious. Thanks so much!! :-)
ReplyDeleteWow. That lady really has issues with personal space. Why on earth would she think she knew any better about what you need than your aide? I think I would have been laughing my butt off too.
ReplyDeleteEva, thank you for starting this blog! As someone who tries to think things through, but who can fall short of the mark through ignorance and inexperience, I am definitely happy that you're willing to take on a teaching role WRT all of this. I'm sad that there are so many of us that need it, but glad that this is out there.
ReplyDeleteI'm also amazed at the tolerance that you show for people. Since you have to deal with this stuff so frequently, I'm sure it's something along the lines of having to choose whether to laugh or scream, but since I tend towards (delayed) screaming, I'm always impressed by people who can be less bitter than I. Great post!
I hope the food was good, at least. But the whole thing, the way she hung around and how she was talking, that just smacks of bad customer service in general. I would think that even parents with fussy, noisy children don't receive that much attention. And it isn't like you guys asked for her help.
ReplyDeleteEva, i love that you have this blog. I have a brother who is disabled, but he doesnt live with us and so ive never really known him. Ive kinda always had this need to communicate with him and other people who are like him, but i didnt know how. you're tips were, actually, very helpful. thank you! you may not think this (or you may think me a bit cheesy) but you really are inspritional. So thanks again...and keep posting, because your videos are a big help and your comments as clever as can be.
ReplyDelete:D
Hi Eva!
ReplyDeleteI really like your blog!
I have a question I'd like to ask you... and I really hope it doesn't sound ignorant or rude, but what is the reason you don't use a voice-synthesizer (like the one Steven Hawking uses) to communicate with people, instead of a letter-board? From your videos I gather that you have enough muscle control to use one. I mean, that way, you could have just told the waitress yourself, "No thanks, I don't want any pizza or a sippy-cup," and she'd be more likely to get the point that there is nothing wrong with you mentally, just that you have a physical disability. I am in no way trying to defend the waitress, but wouldn't that just be easier for you?
Olga
Here is why I said "I think you missed the point":
ReplyDeleteAnd uuh, no one saying anything to her in the beginning would have encouraged her.
And remember, videos make people act different. So if the waitress new there was a camera there, it would have influenced her behavior.
It seems a recurring theme that your comments include telling the blog writer what she could have done better, could have done different or should have payed attention to. Perhaps this is not your intention but as a fellow reader of the blog, this is what I see.
The reason I say this is missing the point is because the blog writer has taken her own personal time to help people understand what disability is like from her perspective. Coming along and playing devils advocate on what she shoulda, woulda, coulda done different to help the privileged folks around her is just plain rude.
So that is my .02 cents.
Hey Eva, since I can concede that I come off as rude/brash/on occaison uncalled for - just let me know if you find my comments hurtful/ taking things out of context/unwarrented....
ReplyDeleteBecause I'd totally stop.
And it's not my intention to, uuh, be hurtful. Just let me know if I am. Otherwise, I'll still comment how I have been.
Thats just how I role. I like to argue. It's nothing personal on my part. But since this is very much personal for you, I can see where it might be hurtful. But if your skin is thicker then that, and you don't mind, I'll continue as I am.
Because your blog is definately interesting, and I'll continue reading regardless.
Maybe you and your aid should have force fed *her* some pizza and see if she "felt better" enough to leave you in peace :)
ReplyDeleteLOL, HAND!!!! And Fishy Fun.
ReplyDeleteKat totally cracked me up...
Why is your aide simply sitting there and laughing? Is it because you're more interested in getting a good video out of it than in actually educating people on how to handle encountering people with disabilities? I understand you don't want to "make a scene" but as someone who's worked in several disability offices and as an interpreter I know there are many ways to inform ignorant able-bodied people without having to embarrass or "mother" the disabled person. You appear to be encouraging the ignorance for the sake of a good video.
ReplyDeleteI'm sorry you have to encounter what you do, but poking fun at people anonymously after the fact isn't going to help anything. Educating them is. Good luck.
I found out about your blogs via a friend's post on fb. I think this is a wonderful way to educate people that might not be aware of their disrespectful behavior. I think you have a great perspective and I enjoy reading about it. I'm definitely looking forward to reading more blogs!
ReplyDeleteHey Eva,
ReplyDeleteJust to let you know I'm reading, subscribed and totally dig the blog. I gave you a write-up in my own post today at http://rhodester.net/sickie-poo It's about some of what my wife goes through but I found a tie-in for you, and hope I can send some new readers your way.
Cheers,
RhodesTer
I found my way here via RhodesTer, after a friend had posted that blog on FB and I'm so glad they did!
ReplyDeleteI love your blog - this project is brilliant, and your writing is amazing. I love your laugh, too - it's infectious!
I have nerve damage in my hip and often have to walk with a cane - I just posted a piece in my own journal about invisibility. It's amazing the range of disability that is affected sometimes.
Hoping you 'feel better' HA HA!
Get the chip off yer shoulder Eva.
ReplyDeleteYou play-up people about your disability so you can laugh at them when they try to help you.
Your aide is a dolt!
Karma is a bitch.
Some comments here are obnoxious. STFU if you're not disabled and if you can't comprehend the point of this video/blog. Seriously, you just don't understand and you should listen and learn from those who do.
ReplyDeleteANYway, Eva, this blog is awesome. I loved this video, especially the HAND! HAND! comments, haha. I get this all the time at restaurants.
Hey, to the second anonymous.. you know, the one being all whiny about karma (oh, the irony).. at least have the balls to post your real name and a link if you're going to be a putz and jump all over Eva. Pure cowardice, hiding behind your browser that way. Everyone knows who Eva is. Everyone knows who I am. Seriously, grow a pair.
ReplyDeleteIt's slightly off-topic, but the waitress' behaviour reminded me of going to a restaurant with my 2 (gay) uncles and their (adopted) 2-year old son.
ReplyDeleteOne of my uncles is white, the other is black, and their son is black. People often misunderstand that they're BOTH fathers, which is fair enough I suppose - people are lazy and jump to conclusions.
However, this one waitress was cooing all over the baby, and when she heard they were both his dads she got really intrusive and kept asking all these personal questions.
The killer was when she asked 'so where did you get him from?' One of my uncles looked her in the eye and said 'Wallmart'. It was brilliant. Everyone laughed, she finally had the decency to look embarassed and then scuttled away, letting us finally eat our (cold) food.
"The woman was really sweet and no-one wants to make her feel bad".
ReplyDeleteIf that's the case, let's hope she never ever comes across this blog.
(Anonymous profile, but my name is Flora)
I found this blog thanks to @ZenMonkey. I agree, though, clandestine videos aren't the way to raise awareness, educating people will work. (Provided they're not teenagers who just think your disability is fake/all in your head.)
ReplyDeleteIt was really interesting to see the other side; how people react when they can *see* that you're disabled. I get a lot of abuse and incidents of bullying because I'm a "liar" "attention seeker" "malingerer" and I get told that if I "pretend I'm healthy, I'll be healthy."
I speak up when people treat me in a way I don't like. I'll say 100 times that my disability is not contagious, so there's no need to keep a 2m radius away from me. I'll say that I am disabled, need a wheelchair at times, and can't catch public transport in case I faint, so that's why I need the disabled parking spot. I know it's uncomfortable and difficult to make a scene or correct someone, particularly if they mean well, but it's the only way for people to learn. Maybe let your aide know what you'd like her to say in these situations.
And I don't mean to offend, insult, or intrude. This is just my opinion, based on personal experiences. =)
=She laughs a lot=
ReplyDeleteWhat a wonderful thing to have said about oneself!
Eva, I particularly loved this post. I will write about you (again), this time in my Brazilian blog (http://pagina22.com.br/index.php/category/blogs/de-la-pra-ca/).
ReplyDeleteTell me: why don't you write a guidebook on how to improve how people interact with disabled people? Maybe you could sell it to corporations for training purposes. Or maybe people could download it from your website (for a fee or free). I think you could go places with it.