Wednesday, August 5, 2009

Hi and welcome to The Deal with Disability!

Hey, I'm Eva. I'm a recent college graduate. I like to write, to take digital photographs, and just chill. But this blog is not about what I like. This blog is about how people treat me. You see, I am physically disabled. Actually "severely" physically disabled. I have Cerebral Palsy, which for me means I can't walk, speak, or use muscles in traditional ways. I use a power wheelchair to get around and spell out what I want to say on a letterboard.

This blog will be videos and stories of people treating me bizarrely. My video camera is mounted to my wheelchair (very discreetly) and I basically just press record whenever I go out and then edit the good stuff for you! I will then write my comments on the event, which is usually what was playing in my inner monologue while these insensitive people were talking. Feel free to email me at eva.g.sweeney@gmail.com. Hope you enjoy. Here's an introduction video (no other people, sorry).



http://www.youtube.com/watch?v=POJ8IQFCv6s

P.S. I want to make this blog accessible for everyone so please send me any suggestions you have to help accommodate your needs or the needs of others.

78 comments:

  1. Too bad you didn't have a camera on your chair when that woman was hitting on you at Moonshadows. She was nuts!

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  2. I'm really interested in this Eva! Cool idea that's for sure. I look forward to your posts. :)

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  3. Awesome! :) I'll link this to my website tomorrow.

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  4. I am so excited about this! Have been following you on LiveJournal for a good while now and think you are great. Another first thought was "Why didn't I think of that???" Best idea ever, soooo looking forward to the crazies!

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  5. Eva, you are awesome.

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  6. I was wondering if it would be possible for you to post a link to your videos, perhaps on youtube if they are being hosted there. I'm just asking because the way in wich they are imbedded in your blog is inaccessible to screen reader users like myself... and of course I'm really interested in what you're doing with this blog! Look forward to your material.

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  7. thedealwithdisabilityAugust 6, 2009 at 5:03 AM

    Thanks for the suggestion. I just posted the link and captioned the video.

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  8. Eva, I totally support your efforts here. I may soon have to go onto a scooter to get around due to my weight and I thought about doing the same thing. I think you have an opportunity to educate here on a profound level. Good Luck

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  9. Good Luck! Will be following all of your posts.

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  10. Hey girl!

    Is there supposed to be sound on your intro. video? I didn't hear any, & it's funny b/c this was the first time my wretched useless media player (have to get a different one) actually played a video!

    This is a great idea, though I agree w/the CL poster who said you might expose yourself to legal issues resulting from using someone's image w/out their permission. I wonder how hard it would be to pixelate someone's face on a video?

    Anyway, you rock!

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  11. I am also disabled n people can be so rude. I have a seizure disorder n people yell @ me for parking in the handicap parking. There's nothing wrong with you I've been told this many times. There r people who's disabilities can't be seen. Good for u Eva! Maybe u r our shining star that gets through to them. u go girl!

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  12. hey!! this is great! my partner and i have been throwing around the idea of making a documentary compiled of just this kind of thing. the idea being to connect lots of different crips w/ video cameras to document what life is really like and how we're treated.

    so, yay for this. kick some ass!!
    cheers
    erin

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  13. Eva, great idea! Like you, I'm also a wheelchair user. I can speak fine, but I am deaf. Can you
    add captions to all your videos so I will know
    what people are actually saying?

    Kevin

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  14. Hi Eva.

    I really like this video! I think it's a great idea!

    Vanessa

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  15. Hi Eva,

    can I send you a cartoon I created about a friend of mine using a letter board? Send a mail to my email address and I'll forward it to you.

    Kind regards,

    Dave

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  16. SO excited to see how this works for you! I just finished up a job working with developmentally disabled adults and was often surprised by peoples reactions in the community. I am also only 4'9" and experience a great deal of staring (especially by children) when in public (although people don't believe me, I often have said that I would take video of it if I could work it out so it couldn't be seen). I honor your decision to do this. Good luck!

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  17. My friends with visible disabilities and I (I'm currently non-disabled) have talked about doing this for a long time, it's great that you're doing it! I really look forward to seeing the video and the discussions that can emerge and will definitely spread the word.

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  18. This is so awesome, Eva! I can't wait to see some footage. Keep up the great work.

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  19. As usual, great idea! You never cease to amaze me with your courage. It's awesome that you've decided to do this. I can't count the many times I've encountered people who treat me like I have no brain.

    Keep up the great work! Oh, and tell your dad I said hi!

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  20. haha i've been waiting for something like this!


    miss you. hope you are doing well.

    much love

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  21. I am so excited that you started this... Dont forget about methed out vons worker... "You gotta get your coupons for ritz OKAY BUDDDYYY!!!"

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  22. Hey! You're really, really cute!

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  23. Valuable thoughts and advices. I read your topic with great interest.

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  24. Thank you! You often write very interesting articles. You improved my mood.

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  25. I am an amateur photog and my understanding is that if people are in a public place they have no expectation of privacy and you can photo them to your heart's content. And you can publish them anywhere you want without needing to get permission unless you are being paid for the photo or using the photo on something you get paid for (like promotional materials for your business).

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  26. I really respect what you are doing on this blog. It is fascinating how ignorant people can be. I admire you're strength.

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  27. I am blind. Could you
    you email me at harlynn@panix.com
    and give me your email so we can communicate?
    Thanks. Bob
    I hope you can read this.
    I am from New York.

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  28. Eva, thank you so much for making this blog! I am a usually able-bodied person with Rheumatoid arthritis and for the first time last summer was in a wheelchair for a couple of months. Being new to the experience, plus the fact that I felt like crap the whole time and in pain, I handled it with far less grace than you do. I guess I had thought we had come farther as a society than we actually have. People would completely ignore me, too, speak to my 17 yr old daughter (who, incidentally, also looks like a 10 yr old boy). Other things that really pissed me off is the wide interpretation of 'handicap accessible'. I'd say 90% of public places are a significant challenge to the un-ambulatory. Sadly, (to me because I hate their food) I found that McDonald's seemed like the most accessible public place by far. Now that I'm walking again, but with considerable challenge still, I get to deal with what I call "Old people stink-eye". The mean looks you get from old people when you park in handicap. Aaaargh! Please keep the videos coming! I think in that one, where the girls wouldn't move the chair, hell-you should have just plowed into it. Maybe you can rig some kind of police bumper in the front of your wheelchair. Carry on, sister!

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  29. Hey

    Love your blog. I use a white cane when I go out as I'm partially sighted and started a blog about the inane and stupid things people do and say to me but I got too angry and had to stop. It's good to see that you manage to laugh at things, rather than just get in a rage like I do!

    Jacq

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  30. Bwahaha! I love this idea. How do you have your camera set up? I should try this sometime. Watch out walkies, you're on Candid Camera!

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  31. Great idea for a blog! Looking forward to your posts.

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  32. Eva,

    First let me say you are wonderful. Thank you for sharing, it's amazing to read your posts. I have no experience with disabled people so it is nice to get to know you even if it is via your site.

    I am a web developer and I am wondering if you could maybe post or talk about how you navigate the web and what you love and what you hate about modern web design/web sites. I try to do my best to adhere to the disability standards of web dev, but those are mostly for the blind using text readers. I am just wondering how navigate sites, click links, etc and if you find the web a disability friendly place in general for someone such as yourself.

    Keep on keepin on...

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  33. Eva,
    You rawk girl! I found you by way of metafilter.com (just in case you suddenly get a lot of hits).
    This is a fabulous idea. It would be good to get people to realize that things are not always as they seem.

    Maria I know what you mean about the old lady stink eye. I got that from two different people when parking in my work parking lot (handicap parking). The chagrin on their faces when I came out with my cane was priceless. I just hope it taught them that disability comes in all sizes ages and types. I am 4'8+' so I can relate to Ash, I also get treated like a kid all too often. Since I am beyond my 20's it mostly amuses me now.

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  34. This is absolutely fantastic. I have invisible disabilities, and my dad and his side of the family are Deaf. I work at a horseback riding for the handicapped stable. Very few things annoy me more than the way people talk down to disabled people. (Well, talk down to any people, really!) I have had several students with CP, and ALL of them get talked to like they're babies, just like in your Starbucks video. Even some of the other instructors, who know better, often do this. I very much liked your statement on default tone. And thank you for captioning your videos!

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  35. Hi Eva,

    First, I want to say that I love your blog. You deal with a sensitive topic in a way that people are able to hear, and I think this blog could help educate many people.

    I was curious and thought I would ask, though you by no means are obligated to answer: I noticed that your name on YouTube is DisBoi83. Is boi an identity you claim? If so, would you be willing to address what that means to you and what challenges you may have faced in that regard?

    Thanks and keep up the good work!

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  36. POWER TO YOU!

    This is what blogging is about! I am so glad a friend shared this with me... and am psyched that I can send it to my Dad to show his students (in Ireland) when he - architecture professor - wises- them-up to things that able-bodied people might not have thought of before.

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  37. Thanks for starting this nifty blog - just another incredible way that technology enables EVERYONE to communicate and share! I was impressed with the letter-board demonstration!

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  38. Fantastic work, Eva! Helen Boyd just blogged about your blog today at www.myhusbandbetty.com, and when I heard about a cute dyke in a wheelchair with a wicked sense of humor, I knew it had to be you! We met at the Trans/giving in Long Beach; I'm the really tall blonde poet.
    xo D

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  39. Hi Eva! The posts you've made so far are amazing. Seeing things from your point of view is a huge eye-opener, and I love the snarky comments! I really hope you continue writing this blog for the foreseeable future. You're doing a good thing for the world.

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  40. Hi Eva! Found your blog via bitchmagazine.org. I think that what I like best about your blog is the reminder and education component--no one seems to teach "treating disabled folks like people" in school. I hope your blog will help others to remember to check their preconceptions, and to think before they speak.

    Question for you: do you travel? I write a travel blog for folks with disabilities--TravelsWithPain.com. I focus on hidden disabilities (I've got chronic pain secondary to endometriosis, and IC, a painful bladder conditions). But I want to occasionally include issues of mobility while on travel, and I love your voice. If you're ever interested, I'd love to have you guest blog on Travels With Pain sometime.

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  41. You do have the right to video people in public.

    Also, take a look here for bloggers' rights: Legal Guide for Bloggers from the EFF.

    Here is another good article, Photography in public places: know your rights. It discusses film as well. There is nothing preventing you legally from taking photos or video in a public place.

    Cheers and keep on with the awesome Citizen Journalism!

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  42. Oh, whoops, I think that 2nd link was from the UK!

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  43. Thank you for this blog, being able to see and read your experiences is really powerful.

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  44. Hi, Eva! I absolutely love your blog. You are so hilarious and I look forward to reading and seeing more from you. Just wanted to let you know that I've added you to my list of blogs on MY blog, "I'm Not a Feminist, but..." Hope you'll check out my blog, too. Keep up the fabulous work!

    - Rachel

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  45. Ha! This is such a great idea!!! I love it so much! Not only is it entertaining and fascinating but it is also such a great learning tool. Great job, "mister." ;)

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  46. Hi Eva, I read about this blog on Bitch Magazine's Facebook page, and I wanted to let you know how much I appreciate what you're doing. I'm also a 26-year-old woman with CP. Even though my disability only affects my legs (so I can communicate "normally" and am able to "pass" as non-disabled in many ways), people treat me differently as soon as they see my wheelchair. I know how hard it can be to find other young people with disabilities, so feel free to email me if you ever want to talk more. I'll definitely keep reading!!!

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  47. Hey Eva,
    I just watched and read all of your entries, a friend of mine posted your intro in a forum and I was immediately intrigued. You are a strong wonderful woman, keep up the great work. I know what it's like to be looked down upon by the public, but not for a physical disability, but for being a Transman. Keep it up, stay strong, and keep your chin up.
    With love,
    James

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  48. hi,
    i loved reading your blog, i am raising a little angel who has been diagnosed with CP, quad., she is 6 years old, i hope one day i can make her read your blog.

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  49. Nice header picture Eva. I see you've changed themes. I used this theme as the basis for my blog although I've done quite a bit to change it. If you'd like to learn how to get a script going to randomly change the header picture get in touch, glad to share it with you (it's simple).

    Keep up the great work.

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  50. Best of luck! I put a link to your blog on my facebook to let my friends know about it. Looking foward to reading your posts in the future.

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  51. This is a fantastic idea for a blog. I see a book deal in your future. :)

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  52. Thank you for sharing your experiences. I think you are doing a wonderful service by telling people what it is like from your perspective - a perspective not frequently heard in my profession (special education and deaf education). Also, I appreciate that you caption the videos. It means I can share them with my students and colleagues!

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  53. Hello,

    I just found your blog today. This is really interesting. I must say I am guilty of ignoring handicapped people. I do move out of the way though! This blog will hopefully make people realize how to be more sensitive. I'll remember this in the future when I have an encounter with a hanicapped person.

    So, I wanted to let you know that I just got a job writing for cerebral-palsy-information.com. We want to do a little write up describing your blog with your picture. Can we use the one from http://bitsandpieces.us/2009/09/15/the-deal-with-disability/?

    Also, if you know of anything that could be of interest to people with cerebral palsy, could you let me know?

    Thanks so much, and good luck with your blog!

    Amanda Coello

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  54. Eva,
    I am your biggest fan and can't wait to read more of your blog.

    - Monty

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  55. Eva -

    You're an amazing writer, I am so glad to have found your blog! I look forward to following your posts and hearing how you've been since we last saw each other.

    All the best,
    - Becky (from high school!)

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  56. Eva,
    I am a special ed. teacher from PA and have two foster sons with cognitive disabilities. I am very close to people who have similar experiences as those about which you've already written. I still become annoyed frequently but am trying to see the humer and good intentions of the specific scenarios. Your blog is amazing, not because you are "so strong and amazing" for being disabled and living your day to day life but because it will actually educate others on how silly some of their interactions and unknowing belittlement actually is. I hope that you continue to post because it will truly inspire and educate others.

    Luck and Blessings,
    Amanda Bentz

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  57. This is such an amazing idea!! Thank you!

    My one suggestion would be if you could include a transcription of the videos for those who are deaf/hard of hearing. I realize that might be time consuming, so maybe just a quick summary of what happened?

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  58. Followed a link here from Womanist Musings, and am really excited to read and watch more of your blog. I know what it's like to have to educate others about how not to be ignorant a-holes, so as someone just beginning to really think about my able-bodied privilege, I want to say thanks for the effort and the humor with which you handle clueless people.

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  59. also from womanist Musings and just read your posts

    this is such a great blog. thanks!

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  60. Hi Eva.

    I just wanted to say hi and tell you thanks for writing the blog. I'm an aide to one of my best friends who is in a very, very similar situation to you. She also has CP, wheelchair bound, non-verbal, and is just starting college this next year. She even uses a letterboard to communicate too (I love the idea of the laserpointer with it).

    I'm so incredibly excited to find someone who is in her similar situation who has finished college. Kelli (my friend with CP) is just discovering that there are going to be even more hurdles to going than originally anticipated (medicaid is making it so I cannot be her aide during "educational" outings, nor "social" ones either). I hope you don't mind if I give her your email address that you posted. I'm sure she'll want to toss some questions your way.

    I can't wait for your next post. They are very entertaining. I think Kelli and I have gone through those situations too, except I am not as nice as your aide. I snark, as does Kel. The video with the crazy waitress made me laugh so hard. As do the blogs about being mistaken for a young boy. Kelli has her hair short too and I don't know how many times I have to correct people for her when they think she's a boy.

    Keep posting the good stuff <3

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  61. I just found your blog, and I love it. I have a mental health disorder that isn't readily apparent, so I'm not discriminated against walking down the street; however, once someone who doesn't "get it" finds out, things change and I am treated differently.

    I want to thank you for writing this blog. Like a lot of people, I don't always know how to communicate with people with disabilities. I really appreciate that you would take the time to explain things and educate people. I look forward to learning through your experiences.

    Your sense of humour, patience, and positive outlook shine through your writing. And through your awesome smile and laughter, too.

    I can't wait to read more.

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  62. Hi, I have a daughter with CP and we just howled reading your blog. I got your info from Susan Ellis at Footpath Pictures. Kay, my daughter, is in the video. We have had such funny things happen to us too. Have you ever had someone speak really loud and slowly to you? Or stand in front of your van ramp and not understand why you won't come out?? Or ask you questions, wait 2 nanoseconds and then answer for you. Anyway, I guess you just have to laugh! Keep on rolling! Sandy and Kay

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  63. Eva, you rock! It's been too long. How's life in LA? I'm going to be out there in October, maybe we can get coffee. Proud of you, woman - as usual, insightful with a wicked sense of humor.
    Cheers,
    Laurel

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  64. Hi Eva,
    This is a great idea for a blog. I just read the Wanda bathroom/furniture story. Ahhh, horrific PCA stories, they never disappoint!
    One comment for you and your commenters: I noticed you referred to the "crazy" things/people say/do above, and some of the people who comment on your blog also make comments about "delusional" people or "did she take her medication?" etc.
    I've recently realized, from reading some cross-disability blogs (mostly at FWD) that using "crazy" as a pejorative or just generally any reference to mental illness as fucked up is *everywhere,* and is something I say often, which I'm now trying to change because it's basically ableist language that those of us with physical disabilities might be less aware of than when people use other ableist slurs, like "lame," or "spaz," or "retard." Calling something "insane" or "crazy" when what you mean is "offensive," or "ludicrous," or "fucked up" is something I think PWDs -- esp bloggers -- need to rethink.
    -Sharon
    p.s. I actually do have a sense of humor, fwiw. I used to do a column and cartoon series called Sick Humor. So, I'm not trying to bummerify your otherwise excellent, hilarious, and brilliant blog.

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  65. Hi, EVA,

    I found your blog by accident.. and that I know there are no such things as accidents. I call them godincidences...

    (And I thought that I have already written out a post here before except that I cannot find it..LOL)
    by the way I am also labeled as being "disabled" too but I have what is known as a TBI which stands for a Traumatic Brain Injury..which may explain my previous statement.

    What impresses me the most is how you are able to roll with the punches so to speak .. you never let anything stop you..

    In many ways we are similar.

    Well I've got to go now.

    Because my stomach needs to be fed.

    LOVE

    FF

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  66. Eva,
    you're website is awesome keep it going your insight is truly inspiring,
    all the best

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  67. I just found your blog. I read some but not all of your entries. They've been insightful.

    Do you find a difference in attitude or perspective between people who were born with a disability and those who acquired one in adulthood?

    I also wonder if you're sometimes treated oddly by members of the disabilities community.

    My experience has been that having a disability does not guarantee appropriate or even kind behavior toward other PWDs.

    Keep doing good work.

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  68. Hi Eva: I am just wondering when you will post your videos? I think it's a great idea. If you need assistance with this, I would be happy to help you. You should be very proud of yourself for all your achievements. So many without disabilities don't accomplish what you have with graduation from college, etc. Good for you!

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  69. Thought you may be interested in this:
    http://blog.dealextreme.com/hands-free-shoulder-pad-for-digital-cameracamcorder/

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  70. What a great idea for a blog! Love it! Look forward to reading and viewing it! Keep on keepin' on!

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  71. Just discovered your blog. Great stuff. I'm adding a link to mine (Badass Chaplain).

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  72. I saw your ad for an assistant on Craigslist and had to check out your blog. Very cool... love it!

    If I were younger and could survive on $12/hr I would definitely apply. It sounds like you're fun to work for. Good luck in your search. I hope your next assistant turns out better than Wanda ;)

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  73. I loved your video on aides. I saw it in India when your Dad showed it at the conference we were at. I'm looking forward to seeing more of your posts here.

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  74. Hi Eva,
    what can a person with Bell's Palsy say to someone who insists that she is 'in denial' if she is happy and making the most of her life? i also hear nitpick comments about my features i wouldn't make to another person, because nobody's body is 'perfect' and i accept my body the way it is, just a real human body. Thanks!!

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  75. Hi Eva,
    My name is Cassie (college grad with CP). I was actually looking for a blogger who just wrote about being disabled and I was surprised when the first one that popped was about someone who had similar experiences. I think you have a great idea, here. I love that you are educating when appropriate and forgiving and forgetting when necessary.
    I would like to start a blog about my life. However, I feel like I would be writing about the Pseudomonas bacteria instead of something fun and humorous. Do you have any ideas? Is it okay to document the bad? Any thoughts you have would be great!!

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  76. Crystal Whisner-KileAugust 18, 2012 at 1:43 PM

    Eva,
    I think what you are doing is great! I enjoyed reading some of your blogs and think that your dogs are extremely cute, and you can see the love that you have for them as well in your writing!!You are a very talented young lady and I can't wait to read more!! Keep doing what you are doing because you are a very motivating, strong willed woman and encourage the rest of us!!

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  77. Hey, thank you for writing this blog! Reading personal accounts like this is usually the best way for me to be aware of my privilege and this has been the most eye-opening read on living with disability I've come across. It's incredible how disrespectful some people have been to you even after they've had your condition explained to them. Being an aide for disabled folk actually sounds like a really cool and fulfilling job and I'm going to look into how one can get into that kind of work.

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