Last post Fri, Oct 10 2008 6:59 PM by KatDucDuk. 12 replies.
I'd like to invite you all to add your voices to an exciting project I've started. I have cerebral palsy and use a wheelchair and electric scooter. I'm also a writer and editor with training in teaching and the performing arts, and recently all of this has intersected with my young-adult concerns about my own love-life. The result is my inspiration to begin something I'm tentatively calling...
The finished product might turn out to be a nonfiction book, a performance piece, and/or something else entirely; the form(s) it takes, months or years from now, will depend upon the amount and kinds of input and help I receive from you and others.
I do know that I intend to give individuals with disabilities, and those who care about us, a chance to think and talk about ourselves as physical, social, romantic, and sexual beings.
My first step in this project is to ask people with disabilities to fill out this questionnaire so I can gather your ideas, opinions, and stories. It includes questions about identity, body image, sexuality, relationships, and associated topics. (Eventually, I hope to gather input from our nondisabled relatives, friends, and lovers, but that step will come later in the project.) It's very long, but don't worry: you're NOT expected to answer every question-- you may pick and choose the questions you want to answer. And there are no wrong answers. Many of the questions are very personal in nature, but your participation can be anonymous. I will not share your full real name with anyone in connection to your specific answers (in fact, you don't even need to share it with me), and I won't share your contact information. To open the questionnaire, click here and then copy, paste, and save it into a Word document. Then send your answers to me in one of the several ways described in the Introduction and Guidelines. Please read the Introduction and Guidelines carefully before responding to the questionnaire.
I've also started a Facebook group for The Kissability Project. Please join and invite your friends!
Thank you all in advance for your help. I'm posting here in the hopes that lots of Disaboomers will be genuinely interested in the project and will enjoy participating (so I also hope this won't be considered spam and get me deleted or get you all annoyed with me! )
I hope they doesn't close you the thread for spam.Good luck
The following is the update I sent out to the Kissability mailing list on January 5, 2008. (Yes! There's an official mailing list! Contact me if you'd like to be on it; I'll also continue posting the mailings here.)
Happy New Year, everybody! Kissability is off to a great start, thanks largely to your responses and suggestions. The vast majority of feedback I've received about it has been enthusiastic and supportive, and even those who have been skeptical or critical of it have made valid points that I've taken into consideration. I launched the project in late November 2007, and we're headed into 2008 with just over 200 members in the Facebook group and nine respondents to the questionnaire .I'm going to list the names by which the respondents have chosen to be identified, so that no one else chooses the same names. If you are still planning to respond, please do not choose any of these names (or anything very similar) for yourself. Otherwise, I'll have to ask you to choose another one or choose another one for you:ChrisClaraEricJamesJohnJoshua MarieNicoRebecca W.Interestingly, all of the respondents so far are people with mobility impairments (though some have additional disabilities as well). My hope is to hear from people with a wide variety of conditions, so if you are blind, deaf, autistic, a Little Person, etc., I especially encourage you to add your input. (But, of course, I still welcome those with mobility impairments to answer!) I plan to continue collecting responses at least until June 2008, so keep them coming!____________________ Those who have returned the questionnaire have had fascinating things to say. To give you a taste of the joy, sadness, pride, anger, ambivalence, insight, and humor that we've already found, here are a few choice quotes from the first three questionnaires I received: "I was categorized as the worst body in my class when in high school." "If I were to wake up tomorrow without my disability, I wouldn't feel complete.""'Oh my God! I MUST give that sexy man all my money!'" ____________________Rebecca W. included a touching comment about how it has felt for her to participate in this project: "I learned a lot about myself from filling out this survey. It was cool. I laughed; I cried; I got angry; I got jealous…and I've told you, a complete stranger, more about my thoughts and feelings than I've ever verbalized aloud. I still have no idea why but I trust you. Filling this survey out has been a journey, a journey that I'm not sure I want to end, but I guess all good things end sometime. I'm still not sure what I got out of this exercise but it feels good to me. I'm not sure what I want others to get out of my answers. I'm not expecting anybody to understand me as an individual…I'm much too complicated to do that…most people are. I guess just want to be heard. Thank you for giving me that voice. Thank you for listening to me…sometimes so few do."Thank you, Rebecca. I hope this is true for every respondent-- that the questionnaire helps you learn about yourself, articulate your ideas and emotions, and feel like your voice is being heard. You (and everyone who answers) grant me an incredible privilege by letting me hear it, and my goal with this project is to enable a wider audience to listen to us all, and for us to listen to each other. Best wishes for 2008,Katherine DukeProject Creatorkatherinedukewriting@gmail.com
The following is the update I sent out to the Kissability mailing list on February 6, 2008. (Yes! There's an official mailing list! Contact me if you'd like to be on it; I'll also continue posting the mailings here.)
Hello again!We've started February with more than 270 members in the Facebook group-- 70 more than one month ago --and 10 responses to the questionnaire (plus one person's notice that she intends to respond). Several people have remarked that the questionnaire is very long, and I agree-- it is. My reasoning is that it's better to ask lots and lots of different questions and allow you to choose which ones to answer than to limit the questions I ask. But in order to make the questionnaire more manageable, I've split it into two parts: Part A and Part B. Part B includes all of the "Complete this thought" questions. Click on the links, copy and paste the questions into an e-mail or word document, type in your answers and e-mail it to me at katherinedukewriting@gmail.com. You may answer any or all questions from Part A and/or Part B and send your responses to the parts all together or separately. If you've already started on the original version of the questionnaire, you may continue with that version. Here's the updated list of names by which the respondents have chosen to be identified, so that no one else chooses the same names. If you are still planning to respond, please do not choose any of these names (or anything very similar) for yourself. Otherwise, I'll have to ask you to choose another one or choose another one for you:ChrisClaraDannielleEricGraceJamesJohnJoshua MarieNicoRebecca W.Interestingly, all of the respondents so far are people with mobility impairments (though some have additional disabilities as well). My hope is to hear from people with a wide variety of conditions, so if you are blind, deaf, autistic, a Little Person, etc., I especially encourage you to add your input. (But, of course, I still welcome those with mobility impairments to answer!) I plan to continue collecting responses at least until June 2008, so keep them coming!____________________ Here are some more highlights from responses to the questionnaire:"I used to almost be one of those people who believes disabled people are abled, and that we should all hold hands and sing 'Kumbaya' under a rainbow while celebrating our inferiority. Then I realized how the real world works, sometime around 13.""My dad gave me some advice on girls. He told me, and I still remember this, 'Son…girls are like eggs. You love 'em and want to hold onto 'em so they don't fall and crack open, but remember: You can't hold onto too tight either; they can crack that way too. But after you get her trust and warm her up into a hard-boiled egg, then she won't crack!' And, well, every time I say that, it just cracks me up.""It wasn't so much a breaking of the heart… as much as it was his taking it out, considering it, showing it to me, and then placing it politely on the ground in front of me and walking away, leaving me to put it back in…"____________________To those of you who like Valentine's Day: enjoy it! To those who don't: may it pass quickly!
KatDucDuk,
I don't see why this would be spam as long as you do not cross-post the same message in multiple forums and do not send unsolicited private messages to the Disaboom members about this survey and project.
I did lock the identical thread in the Arts & Culture forum here. Please keep all future posts in this thread about this survey and project.
Thanks!
Dave (Disaboom Moderator)
The following is the update I sent out to the Kissability mailing list on March 16, 2008. (Yes! There's an official mailing list! Contact me if you'd like to be on it; I'll also continue posting the mailings here.)
March is marching on, and though I confess I've been busy with other things this winter, the project is proceeding apace. Membership in the Facebook group has recently, suddenly surged to more than 400. Someone must have invited lots of friends. Also, I'm pleased to see that there have been some interesting topics raised on the group's Wall lately, including parenthood and the "devotee" fetish. Several respondents have told me that they've heard about the project through their local independent-living centers and similar organizations, so I must thank, as well, those who have helped to spread the word that way. Here's the updated list of names by which the respondents have chosen to be identified, so that no one else chooses the same names. If you are still planning to respond, please do not choose any of these names (or anything very similar) for yourself. Otherwise, I'll have to ask you to choose another one or choose another one for you:ChrisClaraDannielledc64EricGraceJamesJessicaJohnJoshua MarieNicoRebecca W.XenaStill, the vast majority of respondents have been people with mobility impairments. My hope is to hear from people with a wide variety of conditions, so if you are blind, deaf, autistic, a Little Person, etc., I especially encourage you to add your input. (But, of course, I still welcome those with mobility impairments to answer!) I plan to continue collecting responses at least until June 2008, so keep them coming!____________________ Here are some more highlights from responses to the questionnaire:"I was raised for a few years going to church with my stepdad, and sex was taboo. I spent years fishing with the other side of the family, and sex was just normal conversation." "I sometimes remember how easy it was to look in the mirror, when I could see, and see myself, and I get sad and frustrated.""I've always talked to friends about dating, relationships, sex and everything related to the subject. I've always been a person guys come to for advice about their situation(s). Several guys have actually told me they think of me as a sister. I can't help but think 'If we're friends, and you come to me with this stuff, why am I undateable?' But I keep telling myself, if the situation was reversed, a guy who couldn't talk or physically do anything wouldn't be at the top of my list either. So I can't blame them."____________________Happy Spring Break, St. Patrick's Day, Easter, Passover, Vernal Equinox, etc.! Katherine DukeProject Creatorkatherinedukewriting@gmail.com
Membership in the Facebook group is up over 460! I've decided to begin sending a monthly update to members of the group, to let everyone know the latest news. I hope this will increase activity and discussion within the group. For some of you, this will mean that you get two updates per month. If a lot of people complain that this is annoying, I'll stop sending updates to the Facebook group.
I've added a new question to the "Family" section of Part A of the questionnaire. (Part B has not changed.) It's a rather important question, and I'm sorry I left it out before: How would you describe your family members' attitudes toward your disability? How has it affected your family life (recently and/or when you were younger)?
If you've already answered the rest of the questions, you may reply with your answer to this one, if you like.
Several more people (some from the United Kingdom!) have responded to the questionnaire. Here's the updated list of names by which the respondents have chosen to be identified, so that no one else chooses the same names. If you are still planning to respond, please do not choose any of these names (or anything very similar) for yourself. Otherwise, I'll have to ask you to choose another one or choose another one for you:
AnnabelChrisClaraDannielledc64EricGraceJamesJeffJessicaJo-AnntaresJohnJoshuaKFR MarieNicoPete D.Rebecca W.Xena
Still, the vast majority of respondents have been people with mobility impairments. My hope is to hear from people with a wide variety of conditions, so if you are blind, deaf, autistic, a Little Person, etc., I especially encourage you to add your input. (But, of course, I still welcome those with mobility impairments to answer!)
I plan to continue collecting responses at least until June 2008, so keep them coming!
____________________
Here are some more highlights from responses to the questionnaire: "I feel my disability walks 10 feet in front of me, which is good and bad, depending on the person who is walking the other way." "It wasn't easy growing up as a confused, Christian teenage male who thought he liked boys, in the 1980s when there was the whole anti-gay HIV/AIDS propaganda and the age of consent for homosexual acts in the UK was 21 (but it was 16 for straight sex)." "As a husband, I thought of my wife, her service dog, and I as family. Family is something you sacrifice for, strive to please, and would die for."
Take care! Katherine DukeProject Creatorkatherinedukewriting@gmail.com
Kat welcome, sure is some interesting stuff. Will have to think about all this. Good luck with your project and possible book. I've been a teacher for the last 10 years and writing has always played a roll as well.
The following is the update I sent out to the Kissability mailing list on May 18, 2008. (Yes! There's an official mailing list! Contact me if you'd like to be on it; I'll also continue posting the mailings here.)
I hope everyone is enjoying the springtime. A few announcements:1. The introduction of a monthly update mailed out to the Facebook group prompted a few people to drop out. But we've gained back that ground and then some, and we're teetering on the verge of 500 members! There's also, as I'd hoped, been more talk on the Wall and the Discussion Boards. 2. I discovered that at least one person's response to the the questionnaire got caught in and almost deleted by my spam filter for some reason; I'm not sure if this has happened in other cases. If you have sent me something and I haven't responded to it, I simply might not have received it, so please send it again. 3. So far, no one who is Deaf or hearing-impaired has responded to the questionnaire. I think the project would be incomplete without hearing impairment represented, so I'm especially looking for Deaf participants. Spread the word!
The following is the update I sent out to the Kissability mailing list on June 30, 2008. (Yes! There's an official mailing list! Contact me if you'd like to be on it; I'll also continue posting the mailings here.)
The following is the update I sent out to the Kissability mailing list on September 1, 2008. (Yes! There's an official mailing list! Contact me if you'd like to be on it; I'll also continue posting the mailings here.)
2. I'm still especially looking for Deaf and hearing-impaired participants to answer the questionnaire. Volunteers? Anybody?
I'll do the questionnaire if you'd like. I figure what could it hurt. I've heard a lot of people using Facebook and asking me to join up. I guess I'll finally have to take a look.Private message me here on Disaboom if you'd like and give me the details on where to answer the questionnaire.
The following is the update I sent out to the Kissability mailing list on October 10, 2008. (Yes! There's an official mailing list! Contact me if you'd like to be on it; I'll also continue posting the mailings here.)
The first, general-idea-collecting phase of the project is drawing to a close. Time for an update!
