If you’ve done much research on BIID you’ve probably come across numerous references to a website called transabled.org. You probably then tried to find this site, and got either a 404, a “server not found” message, or a domain squatter’s advert (“this domain is for sale” or “find other content about transabled” with a bunch of spammy links) depending on how long ago you looked for it. The bad news is, you’re not alone. The good news is, you’re not without (all) hope.
In its heyday, transabled.org was indeed the most vibrant community of people with BIID around. People from all over the world and with diverse medical histories contributed to the site, which was an unusual mixture of a forum, a blog, and a collection of informative articles. The goal of the site is not entirely clear either, as in some ways it seems to be aimed at increasing awareness of BIID while the users definitely regarded it more as a support group. Run by the former BIID sufferer and advocate Sean O’Connor, the site sadly disappeared at the end of 2013 along with the rest of Sean’s online presence (we still don’t know what actually happened to him). Almost all of the content has nevertheless been archived at the Wayback Machine and you can read it here.
But while that may be good for informative purposes – and indeed I have gained a lot from reading the archives of the site – it’s not exactly exciting news when you’re looking for a support group, like I was when I first found out about transabled.org. Looking further then, one finds a number of obscure Yahoo groups – the ones I found are all geared towards the blindness variant although I have been informed that there are similar groups catering for the other variants – but those are also either no longer existent, dead, or are orientated towards the somewhat more… shall we say, “icky” kind of content.
Indeed, despite the growing awareness of the condition, much of the more community-centred online content regarding BIID has disappeared. Personal blogs that get linked to all over the place have just simply disappeared. Those that haven’t disappeared haven’t been updated for the last ten years, and contain links to even more non-existent sites that only serve to hint at what had once been. Tracing these connections through the Wayback Machine is indeed a fascinating exercise, and can again be useful when you’re trying to dig up every last scrap of information and opinion that you can find on BIID, but still, we’re no better off with looking for someone to discuss these things with.
There are a few personal blogs here and there that have actually been updated in the last six months, such as the one that I’m not allowed to link to anymore (you can find a link on my blog if you look for it) and a few others which I haven’t linked to or read in great depth mainly because they’re about variants of BIID other than blindness. But personal blogs are only really going to get you in contact with one other individual, as the comments sections on those blogs are practically empty (just like mine ;-) ).
But I’m going off-track here. The point is that there aren’t really any good online communities around BIID anymore. For some reason they seem to have all more or less disappeared. Nevertheless I have managed to track down a few small communities, and if you’re desperate you might want to check these out:
- http://forum.biid.ch/index.php – believe it or not, this is the only BIID-specific forum that I can track down. A far cry from transabled.org, and almost entirely in German (any English posts that you find there are likely to be mine, or a Google translation by someone who decided to be courteous to me), this is also a very quiet forum – although apparently there’s also a “private area” which is supposed to be more active although you have to request permission to view and/or post in it and I can’t figure out how to request that permission because the instructions don’t translate nicely with Google translate.
- http://ahiruzone.com/ – there’s supposed to be a community here and they seem quite active although the forum seems small (I assume there’s more if you register). I have not checked this site out as it is aimed at wheelchairs however the combination of naturally-disabled and BIID wheelchair users seems interesting (although I would be surprised if there are actually more than a few naturally-disabled wheelchair users on the site).
- https://groups.yahoo.com/neo/groups/fighting-it/info – not the most active Yahoo group, but the only one that caters specifically for BIID. Nevertheless I am subscribed to this group and I can tell you that it gets a lot of new users – mostly the amputation and paralysis variants, as expected – but most if not all of them just introduce themselves and then become lurkers. Most of the time, sending a message to this group feels like throwing it into a black hole.
Of course there’s always the comments section on my blog too ;-)