tag:blogger.com,1999:blog-29065233.post238574987594648188..comments2021-02-27T19:14:55.443+00:00Comments on No Joke: A discussion of views on BIIDAprilhttp://www.blogger.com/profile/01891867108863249967noreply@blogger.comBlogger4125tag:blogger.com,1999:blog-29065233.post-22185545821860659722015-05-24T16:06:56.654+01:002015-05-24T16:06:56.654+01:00Hi,
I too have BIID (the blindness variant) and s...Hi,<br /><br />I too have BIID (the blindness variant) and so far I have not commented on your blog and I know that you are not very active on this blog anymore so I don't know if you will ever read this but I have a few things that I would like to highlight with regards to the points that you have made.<br /><br />I agree that it is important to look for alternative ways of "treating" BIID (besides surgery) but there are two points that I would like to make:<br /><br />1. Regarding your statement:<br /><br /><i>Rather than attacking the BIID sufferer who finds they can forsake the normal route of 'pretending' (I hate the term but I can't think of another right now) as 'therapy' (ha!) for a while, let's embrace that and work with it.</i><br /><br />Personally that is not the attitude that I have picked up within BIID communities (I am thinking in particular of transabled.org which, although no longer available on the internet, is still a valuable resource when researching BIID, in my opinion). The attitude that I have picked up is more that, if pretending helps one to copye with BIID then by all means do it, but if one does not need pretending in order to cope then it is not frowned upon if one does not pretend.<br /><br />2. Regarding your statement:<br /><br /><i>If there's the potential for more than one route to treatment for this condition, let's work on it.</i><br /><br />While I agree with the idea of looking for alternative treatment options (and indeed a lot of people with BIID are focused on the idea of surgery becoming medically endorsed to the exclusion of other treatment options), I feel that the place where attention is lacking is not with regards to eliminating the need for pretending but rather that people with BIID should be working towards getting pretending to be a medically endorsed treatment option rather than focusing on surgery. I have read of a few cases of people with BIID who have doctors/therapists who are supportive of the person's pretending (if it helps, that is, which it usually does) but they still have to lie about their condition to others (including e.g. support staff at supermarkets, if the person has blindness-variant BIID). I would like to see more recognition of pretending as a form of "treatment" for BIID, and some system whereby people diagnosed with BIID are entitled to some of the same benefits as those with the actual disability (such as adaptations in the workplace, which is still currently only possible either by lying to one's boss about one's health - and that usually fails when insurance is required to pay for special equipment - or hoping that the boss is understanding and prepared to make the required accommodations).Anonymoushttps://www.blogger.com/profile/14584444484481753473noreply@blogger.comtag:blogger.com,1999:blog-29065233.post-79782443613119845162008-03-04T11:56:00.000+00:002008-03-04T11:56:00.000+00:00This is a message for April... I've been reading y...This is a message for April... I've been reading your blog and think you go a long way towards exploring the complex, many-layered, and fascinating issues about which you write. I've got an interest becuase, like you, I'm a writer/ researcher/ film-maker and I've been working on complex and challenging social/ moral issues for years. I don't have anything specific going on at the moment... but I'd love to have a private, totally off-the-record e-mail exhange or chat with you some time (you don't even have to tell me your name or identity if you don't want to!)... this is just something that I'm genuinely interested in in all its subtlety, and I'd like to know more and make sure I properly understand. You can reach me at paul.csmc@googlemail.com - I really hope to hear from you, however you should wish. <BR/><BR/>Thanks very much.<BR/>Paul.Anonymousnoreply@blogger.comtag:blogger.com,1999:blog-29065233.post-46049046056069868072008-01-06T15:41:00.000+00:002008-01-06T15:41:00.000+00:00While I'd usually welcome comments and discussions...While I'd usually welcome comments and discussions regarding what I'm discussing, in this case I'm angered by what you've written, Kyla.<BR/><BR/>You say you agree that there are two treatment routes, then immediately show this to not be the case with your inclusion of the idea that non-surgical treatment would only work in theory; then follow this up by claiming it would only give "a minimally acceptable level of function". This is, to not put too fine a point on it, bullshit and serves only to bolster the standard "I want X removed" mindset that plagues BIID websites.<BR/><BR/>Surgery is not, and never will be, the only worthwhile method of treatment for this condition and the evidence for the success of surgery is equal to the evidence of the success of non-surgical therapy.Aprilhttps://www.blogger.com/profile/01891867108863249967noreply@blogger.comtag:blogger.com,1999:blog-29065233.post-73864330091620780352007-12-30T06:20:00.000+00:002007-12-30T06:20:00.000+00:00It's nice to see someone writing about the BIID co...It's nice to see someone writing about the BIID condition with a different perspective.<BR/><BR/>I agree with the position that there are (theoretically) two routes to treatment for the condition: to create the physical disability perceived as necessary, or to eliminate that need. However, the evidence (anecdotal, i confess - properly controlled studies have not been done) suggests that the latter approach can do no better than provide the person with a minimally acceptable level of function (if even that much), whereas the former actually improves quality of life to a level approaching (and sometimes exceeding) that of a 'normal' person.<BR/><BR/>In short, the difference is between eliminating the suffering and generating methods for coping with the suffering. While there are entire religions based on the premise that to endure suffering is the essence of the human condition, i do not subscribe to any of these; if there is a method that can be used to reduce or eliminate a form of suffering, i see no reason to eschew it and favour an approach that simply embraces the suffering and develops coping mechanisms for it.<BR/><BR/>If a method to eliminate this form of suffering didn't exist, then i would wholeheartedly support the development of such ways of coping and getting by, but it's extremely frustrating to settle for this when the medical procedures exist to correct the problem, but are merely denied to us.<BR/><BR/>Sorry if this is a bit rambling and incoherent, but i'm tired.<BR/><BR/><I>Unrelated to BIID (at least i THINK it is)</I><BR/><BR/>Also, your description of your medical condition sounds disturbingly familiar. Until reading this, i'd never seen anything coming so close to describing my own collection of physical symptoms, and i'd usually dismissed them as being an unrelated collection of different health issues. Other than the liver issue, i've shared all of those - including much medical testing (very expensive here in the US - especially when they come back negative for any known condition, so insurance rejects the claim as 'unnecessary' or even frivolous). It's interesting that you mention it here.Anonymousnoreply@blogger.com