www.incontinentsupport.org

Well.....I guess that answers that.

Yup, I kind of thought that was going to be the answer that Schoppy would post. Kendal has been here a long time, and I have no hesitation in his trustability or motives, it sounds like he is trying to accomplish anyone ever being stuck in their own home out of sheer embarassment of having continence issues, which we all know are embarassing and can be a real hit to your morale, but with the right products and prep, you can carry on with life, it jsut takes a bit of fanaggeling to do it, but not impossible. You go Kendal! Puffy

_________________
Puffy
BC, Canada
Fighting the "Bladder Battle" since 1995

Hi, schoppy!

Hello! I hope you are feeling ok... Are you in a lot of pain?

First, let me try to clear this up, and then I'll more properly respond to your post.

How to clear this up? Here's what some of the posts said:

"but the implication that you had been compiling data on what people have shared here and planned to use it for personal gain"

"I think you might want to carefully consider who posted what content you are drawing your notes from"

First, I want to apologize. I guess I wasn't seeing how other people might interpret what I wrote. From your perspective, if someone was to say that they had been copying everything that I had written... yes, I would be pretty chilled at the thought of that, too. That ISN'T the case here!

I have had bladder/bowel problems for many years. I have been researching incon for my own use. And for knowledge in how to help others. When I would see an article or something I would make some notes about it. I have read stuff from literally hundreds of sites, medical websites among them. This forum, yes, I think it is the best for practical advice, but this isn't the only website I visit.

My heart is in disability ministry. I want to help people with disabilities. When I read something I take notes from what I learn. I have notes about helping people with Autism and no one in my family is autistic. But I want someday to help people who are.

Now, for articles from medical websites -- stuff above my head -- I have much of that saved for reference. Because I'm not a doctor and I don't understand that stuff anyway. But I would NEVER reproduce content or posts from here! That would be out-right wrong. I have *learned* a great deal here and that stuff is in my brain. And from many other sites. I can write much of this book just from my own head. I would never reproduce content or people's stories. But it's not wrong to learn from other people on many websites and to be able to use that knowledge.

Let's say you've been reading here for ten years, off and on, like I have. A young friend comes to you, and she tells you that she's been starting to have a bladder problem. She asks your advice. You sit down with her and comfort her, and you start talking from your combined knowledge of what to do.

Remember that wonderful thread of Sandy's when she helped that young friend of hers? That was a FANTASTIC thread! Sandy is a TREASURE. What a wonderful thing she did. It was amazing to see the progression from her friend being so nervous and anxious to being accepting of diapers and confident in living, and I think she was getting in a relationship if I remember right. The best thread on here, in my opinion.

So you're talking with your friend. You don't remember reading Sandy's thread. You don't remember that Sandy said X, Y, and Z. I couldn't tell you a single thing Sandy said. It's been a couple of years since I read it. But the spirit of Sandy's advice is in my head. I learned a lot. I might have taken down some notes on how to comfort someone who is new to incon, I don't remember.

Every book on earth has been written from the knowledge gained from reading some other books. If knowledge is specific, the original source has to be credited in a footnote. If knowledge is general, like a post says, "A friend told me he had incon and I told him not to worry about it." There is no unique information being conveyed. If there ever were a case of a specific idea being conveyed that was unique to a certain page... of course I would give credit in a footnote. Why not? But this forum is about general knowledge about diapers/incon. The encouragement and advice here is almost all general and found elsewhere on any incon website on the web.

EXAMPLE: I asked in 2010 about how to do public speaking if you're wearing diapers:

Public Speaking if you wear diapers?
http://www.incontinentsupport.org/phpBB ... ?f=7&t=621

I started having much more problems with my bowels and was worried about how I was going to be in front of churches. I asked what should I do, continue or admit there was a problem. The overwhelming advice was to keep talking. Do I remember what the posters said? No. What do I think now? I think they were right. Keep talking.

I have a chapter planned for the book about what if you're up before people, like if you're a school teacher. I'm going to say in that chapter to keep talking. The people on that thread helped me figure that out. But there is no specific knowledge being conveyed. Now, if a post had a very unique idea on how to handle it, of course I would give credit and the link to the discussion.

* * *

I only decided to write a book within the past year. Most of that year I spent taking care of my mother. I wasn't visiting anyplace. I was a full-time caregiver.

I am called to ministry. My heart isn't about money. I want to *help people*.

The book is going to be practical advice about how to live life if you have incon and have to wear diapers. It will also be about caregiving. Much of the book will be about how to care for someone who is in bad health. It also will talk about bedwetting and educate parents on how to handle it.

Ok, I'm going to pour out my heart here, but I want you to know my motivations. When my mother got bad I tried to find a church that would pray for her. We were in a small town in Arkansas at the time. I couldn't find one. I went over to this one church, a church that said they believed in praying for the sick, and the pastor said, "Oh, I guess you could come back next Tuesday. Someone might be in the office." That church wanted her to come to them. I told them that she was too sick to come. They couldn't be bothered to send someone to us.

I was desperate for prayer, just for anyone to pray for her. In the hospital I even chased down a chaplain that happened to walk by to ask if he knew of a church that would come to us and pray. No. I never did find someone to pray. My Mom went home this past September.

Mom and I were talking about how to find someone to pray for her. I said that there were a lot of other people like her who couldn't physically go to a church. I said that there needs to be an online church, something over the internet, for disabled people and sick people, where they can be in a virtual church even if they aren't physically there. Where they can get prayer from someone who has come to know them and actually cares if they live or die. She paused and had this astonished look on her face, then she said, "Do it. Do it! It is your call. It is your call! Start it now, start it now!" She went home two days later.

What I'm wanting to do is to start a church for disabled people here in the Oklahoma City area. And I want to show the video live on the web so if there is anyone with a disability or sick, anywhere, and they can't get out and go to a church then they can have church with us. And be prayed for.

Only 1% of paraplegics have a church they go to, because they literally can't get out of the house and if their families don't take them they can't go. And most churches wouldn't have a clue how to handle a paraplegic if one showed up! I want this to be their church if they want.

* * *

I don't have a money-motive in starting the church. I don't believe in pastors salaries. I don't think the Bible teaches it, and I think that if you have a small group of leaders that you salary it raises them above the other members in a way that divides. My salary for this thing is going to be zero. The church will cost me far more money than the little "love-gifts" that might come my way. Again, my salary will be zero and the only thing I might get is if the members think of me.

I am writing the book to raise the money to start this disability church. I don't have any kind of support like churches helping me or anything. I have to raise the money myself. I'm writing the book so I can both make a living and to start this church. As soon as the book takes off -- Lord willing -- I am hoping to start looking for a space to meet in.

Oh, and please don't think that by me saying all this that I'm asking for donations. That's why I'm writing the book, to raise the money. Now, if anyone happens to be from the Oklahoma City area and knows of a building we could start meeting in for free... oh, yes! Then please Private Message me! I don't mind asking for that. Not likely, but who knows?

* * *

Sorry for such a long post, but some of the posters asked about my motivation. Sorry if it took too long to explain.

Basically, I just wanted to say I'm writing a book, I've learned a lot from you guys (and others), and I just wanted to say thank you.

Hi, Schoppy!

I guess I should have written to you in a PM. I didn't know this would be the reaction.

"Kendal, would you be willing to help me do an update on our Diaper Primer?
Im sure that all the notes that you have would be really helpful on doing the update."

Yes, I would be very glad to! I will help in any way I can.

I think the Diaper Primer meets a real need for something that is short, can be read in an hour or so, and answers all the basic questions that newcomers have. I happened on a post that someone made in a forum on reddit by a young woman who just started having incontinence. She knew nothing or even where to start. She asked if she needed "a product." The advice she got was bad, it was some women's health forum or something where the people weren't incons. She basically had questions and didn't know where to go or where to start. The Primer was written for people like her.

So if you would let me help with that, wow, thank you!

I'll send you my email address in a PM. I'm not sure if the email I registered with in 2004 is the same one I have now. I think it is, but just in case I'll give you my new one.

Thank you for understanding! And sorry if I made a mess...

Good morning Kendal,

Please don't take our fear and doubt personally. There are a few here that all joined around the same time that came from another forum. It was a home to some of us for several years and we truly felt like a family. Good support forums are few and far between and when our old one went south, we were very lucky to find this one. And honestly I am glad things played out the way they did. This one seems 100 times better and I guess as far as I am concerned, I want to protect this and keep it the safe haven it is.
But if Schoppy trust you then I trust you. I apologize for any mistrust or doubt.
Also, my heart goes out to you about your mom. I really know how that feels and if you need someone that can relate, you are more then welcome to PM me and you can can vent anytime. I lost my mom 11 years ago when I was only 29.

"There are a few here that all joined around the same time that came from another forum. It was a home to some of us for several years and we truly felt like a family. Good support forums are few and far between and when our old one went south, we were very lucky to find this one. This one seems 100 times better and I guess as far as I am concerned, I want to protect this and keep it the safe haven it is."

I came here in 2004 because another forum got taken over. It all depends on strong moderation and leadership. That's why I'm so thankful to Schoppy and the mods here. I don't know of another safe place on the web to discuss this stuff. I think this might be the only one.

I wouldn't do anything to endanger this forum. If linking back here would draw the wrong types of posters, then no way would I link back here. You are right, that is something to consider.

Hello, Admin and Members. I see this development as a two-fold concern:

Firstly, there is the issue of linking this forum/website to other sites. There is, of course, concern that fetishists will easily find and hijack the site, but I also have a concern about specific posts and threads relating to incontinence appearing on mainstream/social media sites (or shock-value sites, as I understand Reddit to be). I don't think it's okay for someone casually surfing the web to happen upon ISC members' personal revelations. I'm thinking that Kendal's strategy in asking for Schoppy's permission was in fact designed to cover his butt for posting content (he appears to indicate in his initial post that he had already posted a thread, and in a subsequent post advised that he removed links).

Secondly, there is the issue of the book. Kendal's assertion that he advised the members of his plans because he "just wanted to say thank you" to the members for providing him with information rings just a little bit hollow with me. Again, I think that it's all about making the members aware that he's going to harvest their input, and no one would be able to say that they didn't know or give him permission to use their words. I'm thinking it's either that, or a cocky, in-your-face working example of the "Gotcha"-type journalism that Sarah Palin complained of so vocally.

I realize that posting anything online is an assumed risk, and that for every person who is up-front about his or her actions, there is a slew of those who are not. Kendal's announcements and admissions have made that very real very fast.

Wetters

Wetters,

First:

When I was setting up the subreddit, I didn't even think of what to link to. After I had already had several different posts up linking to other sites, it occurred to me that if I was to link here that it might help bring in some new people. I assumed that it would be welcomed. So I linked to here, and linked to two other interesting discussions. Then I came over here to let the admin know. I assumed that it would be welcomed. Most sites on the internet are glad for traffic!

Once the first disagreement was posted, I realized there might be a problem. I went back over to the reddit and deleted them. I only had three links. No text. No quotes. I removed them.

Second:

"because he "just wanted to say thank you""

Yes, I did just want to say thank you. And I haven't been "harvesting". I have been taking notes for years because I am incontinent and would like to know why. I also wear diapers and I've taken notes on that because it's been helpful for me.

I've been here for 10 years. When I say I've "been here" for 10 years, I mean off-and-on. Two+ years were without internet. One year being a caregiver. Sometimes months between visits. My life hasn't revolved around diapers. It's not like I've been visiting every day taking notes on everything. The vast majority of the threads on here I haven't even read.

In the last year or so I decided to write a book. I don't even remember exactly when, less than two years. So for 8-9 years I was here with no thought of writing a book. And for that last year I wasn't even visiting here, I was spending all my time taking care of someone and trying to keep her alive.

Are you saying that no one here can ever write a book that remotely touches on this subject? I'm sure that Schoppy or Sandy or some of the others could write really good books on this!

Learning from a website is not "harvesting."

As for linking: I won't. Unless Schoppy asks me to.

Sounds like some are being a little too touchy on a touchy subject. First we cannot help what has happened to any of us even though our type of problem can be a taboo subject. I'm WAY beyond what people think of me or my problem.... if they even know. Secondly if a person wants to write an informed book on the subject so as to help others then I'm all for it. It was this site I gathered a lot of information on. It was this site I learned just how many people deal with it & it was this site where I learned to accept what I cannot change and finally it was this site that allowed me to move on. If others can be helped to deal with the subject and have a better quality of life I'm all for it.

Don, just to clarify - are you one of the moderators here?

Wetters