May I share with you some facts about Dr. Wiseman and the use of Adhesions Quilt stories, as I understand it.
Dr. David Wiseman has not only given " birth " to the International Adhesions Society website - because he saw the need and had compassion for us victims of adhesion related disorder (ARD) (which " we " named by the way); but he also continues to work on our behalf every single day! And my dear friends, he uses HIS money for the good of the cause. Dr. Wiseman is far from getting rich from this site nor is he getting rich due to any part of the IAS or issues surrounding ARD! Those are the facts!!
He cares about each and every one of you, who post on this site. I know this because he speaks to me about everything he sees here! He knows your names, your problems, your struggles to get help, your frustration and your fears! He allows your anger to be shared on the message board - because he does understand that as well!
He cannot possibly respond to every e-mail or posting; and that is why I choose not to post as well. It is difficult to deal with the issues of ARD that we have to deal with on a daily basis - just to try to implement changes for the betterment of ARD, to try to respond to so many desperate e-mails, and to try to spend time with family as well. Impossible, exhausting and unrealistic - though I cannot speak for Dr. Wiseman on that, I know it is that way for me.
Dr. Wiseman is not against anything that is progressive and productive for our cause, ARD; but he is concerned that issues not be counter-productive and be dealt with properly, for all. He is also responsible to protect what you and I have placed in the IAS website; because if he did nothing to protect your rights - and you found your stories being shared and used by just anyone for anything and you started receiving e-mail from who knows who for what - then I think we might have a right to be angry at him! But that didn’t happen here.
I understand "some" of the upset surrounding the responsibilities of the IAS in the sharing of your personal ARD stories; however, I understand and appreciate the sense of security that surrounds my story being under the protection of the IAS! I placed my story on the Adhesions Quilt to be used for the benefit and education of victims of ARD! But my ARD story has been " used " by others and taken seriously out of context without my permission - to use "all or parts " of it for promotional use - for profit! I was really shocked when I found out - quite by accident too!
Though we all want our personal ARD story to be available to help the cause of ARD in the area of education and awareness - as well as to help others hopefully to avoid walking the same path of suffering as we have - I do NOT want my story to be used to misguide those who suffer from chronic pain and disability - nor to profit others for personal gain! We cannot forget that there most definitely exists "sharks" out in that big wide world of the web; and these sharks are unscrupulous and cunning! They can strip your story apart, twist and turn your words to support their cause - and then use your name indicating you wrote it!
It is for this reason that the IAS, as well as many public access websites and magazines - that allow personal issues to be presented - put a disclaimer regarding these types of things for our protection. In the event you find out that your story is being used out of context and without permission (as stated within the IAS web site) you may have recourse to try to stop it!
Without a disclaimer, you have no control over it; and you might end up seeing your words - or most surely, your words taken out of context - somewhere you least expected to find them being used!!! This is called the real world!! It is very real and does happen!! Best to err on the cautious side than to suffer the consequences as a result of not being as careful as one can be.
A gentle reminder to people to seek permission for the use of personal ARD stories - was out of respect and necessary for all who posted their stories on the IAS. In this way, each one of us have the opportunity to know why our story is being requested - and just how it will be used. Some people might give permission for their stories to be used, others might not; and we can respect either decision. Each author of the Adhesions Quilt stories has the opportunity to make his/her own personal decision as to how their story will be used. No one is to use your story - or be given your story for personal use - without your permission!!! To me, it is that simple.
It is not difficult to ask permission - and no one seems bothered by that anyway.
Ideas come and go; and in the past ARD stories have been collected for various reasons, permission was asked and LOTS of ARD stories flooded in for use. This can be accomplished once again, I am sure.
To remove your story from this most educational, informative and important web site - the same web site YOU found useful at one time - is counter-productive. When a new ARD sufferer "stumbles" upon the IAS website - like some of you probably did - do you want to deny them the chance to read and learn from your personal ARD story? You say you want your story out there to help others; then why remove it from the IAS? Why?
May I add this food for thought in closing: A few of our ARD sisters, who have their personal ARD stories on the IAS Adhesions Quilt cannot give their permission for use - not now, not ever! You see, my friends, THEY didn’t survive to give that permission; nevertheless their stories did!! Thus they speak from their graves! Those stories need no permission; because once you're dead, you have no rights!
Please keep every one of your stories where they can touch a life! Share them, post them 1000 times anywhere YOU choose; but I implore you NOT to remove them from the IAS; because it will be on the International Adhesions Society that you will touch the life of another victim of ARD - and not one person associated with the International Adhesions Society will profit from you doing that!
In peace and friendship,
Beverly Doucette