Poirot,
I'm not sure what the problem is that you have in all sides of an issue being presented. As moderator, I feel it is often my duty to ensure that this does happen, and in that role have often asked people to post, presenting their views on an issue.
Your remarks about the Maldivian trip are incomplete. We did go there specifically because the problem there is so difficult. In spite of reasonably adequate basic case in Maldives, many patients there still do give up and refuse to chelate or do any of the things that will keep them alive. The sad fact is that the oldest patient there is only 26! Yes, we were there to preach the positive but there is and was no way to do this if we are going to ignore the negatvies. We surely couldn't go into Maldives and tell them life is a bed of roses if you're thal, because they're too smart to believe such a statement. They know the negatives and make no bones about telling us what the negatives are there. I do feel that Danielle has been extremely honest in her approach and given the bad along with the good. I guess we can be like my president and just talk about the good and ignore what doesn't suit that point of view, but I choose not to. I am still quite amazed that a citizen of India can make some of the statements you make about being a thal in India. Face it Poirot, you are one of the priviliged in India. How many of your countrymen are provided the care you get? How many thal majors die before the age of 10 due to lack of even the most basic care? You can't ignore that this happens widely in India, Pakistan, Thailand etc. It is a pure and simple fact. Things may have changed greatly in India, but this is not for all thals and many still find life involves little if any care. How many Indians can afford desferal? Not everyone can use L1. When I was in India and saw the incredible amount of poor people living in the cities (far more are in the rural communities), my thought was "how many of these are thal carriers and what life do their thal children have?" It can't be ignored. How many millions live in India with little or no medical care available? You know what happens to their thal children. They die young. Yes, India has changed, but it still has a long way to go just in terms of survival, let alone the huge social issues involved. How many parents in India would allow their son to marry a woman with thal? When the answer is zero, please let me know.
As for the point about addressing Jemma. Every single post here is read not only by the writer and whoever it is directed at, but also all of the other members and at least an equal number of non-members from all over the world. I seldom post to one specific person. This topic will be read by countless people, many of whom are facing the same dilemma and I will not narrow down the issue to what anyone's perception of Jemma is, which in my view has been a sometiimes distorted perception. Jemma came here for advice and support and quite frankly, she was attacked repeatedly by some of the members and is still being attacked and misunderstood by some. If anyone doesn't get it by now, Jemma really does not want to be put in a position where the pressure to abort will exist. In spite of all the positives everyone has said about thal care in Australia, in her immediate life, the pressure from those around her is to abort in the occasion that she becomes pregnant with a thal major. That is her reality and all the talk about thal being a wonderful life is not going to change the minds of those around her. Perhaps if she can get her husband and doctors to read all these posts it may have some impact on them, but we are dealing with pre-conceived notions and they are not always easy to change. Attacks and smirks will not change any of this. As we have seen with the Maldives, decent care and well wishing does not solve this problem. Maldives needs a huge shake up in their society to educate the general public that thals can and do live real lives, that include careers, marriage and children. Until this happens, many thals there will continue to see no reason to live, as their social future remains quite often bleak. Every week I have another Maldivian tell me that someone broke up with them because they are thal and the parents will not allow it. Without the hope for basic human companionship in life, many thals do give up. This has to change in Maldives, and frankly, after reading TruBlue's post mentioning how so many people within the communities producing thals in Australia, also treat thals badly and either aren't allowed or would even think of marrying a thal, there is obviously MUCH work that needs to be done to change attitudes in the very developed Australia.
Poirot, I am not going to sugar coat thal and pretend there are no negatives. What rubbish that idea is! How many of our members know much better than that? If we are only going to present positive feel good posts, then should we delete the whole Mumbai bombing thread? I think not! And I really think we will do a huge disservice if we only present positive posts. Part of our objective is to educate and part of the reason for that is to find help for people everywhere. If we sugar coat everything, who is going to believe thals need help?!!! If the negative is never discussed, it won't change.
I will continue tp present or ask others to present varying sides of issues here. Yes, we will stress the positive, but only presenting the positive will do a huge disservice to our members and thals everywhere.
And for the record, in Maldives, Shilpa and I presented an extremely positive message but at no time did we tell anyone we didn't want to hear what is negative. Only by hearing and understanding the negatives can we ever change things for the positive.