Geertz approach is hence based on an extended study of exceedingly small matters in order to find support for particular interpretations. This text, however, is written and enacted by native people. His own account can only be based on the indigenous perspective and as such constitutes a second or even third order interpretation. Why is his piece on the Balinese cockfight important? Let me approach those issues in the following two paragraphs. J L Johannes Lenhard Author.
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Related Content. Editors: Alfonso de Toro and Juliane Tauchnitz. There are more dynamic organisations, with blogs, chats… Affected 2, Discussion Group, October Throughout the debate, Professional 2 insisted on the idea that support groups are taking over control with regard to decision-making and management of information. Doctors are going to find it hard to follow you, because our system is inapplicable to this field. We follow norms, rules based on evidence, which are useless here. The only thing we can do is be there for you and learn.
Unlike other countries, where activist groups have had an important role in questioning the medical paradigm Cabral, , it appears that in Spain the support groups are the ones directly responsible for a slow change of model GrApSIA, ; Gregori, The information provided was not only scarce, but also overburdened with gender stereotypes and stigmatization:.
Not a single word.
That we are men? Men are conceived as a combination of XY chromosomes, testes, penis, etc. On the basis of these assumptions, doctors may think disclosure would threaten emotional stability of patients and families, thereby they would withhold it or they would provide it in negative terms. Breaking that chain of silence and negative information is not a straightforward task, especially when the dichotomous model of sexual normality is so ingrained in our collective unconscious.
Affected 2 remembered:. I wanted to know because I knew there was something wrong. And when I found out it had nothing to do with my ideas. We need to search for the truth. My sister found it out before and some years later she shared it with me. One day we came to the doctor and asked for the karyotypes. Not very long time ago. The doctor wanted to perform gonadectomy on us. Many are the functions that support groups had been undertaking in the care of individuals with an intersex condition, some of which are organized while others are unexpected.
Disclosure, education and socialization. Affected 2 underlined:. What child is born perfect? Some are born with a blind eye, or lame, or with just one kidney, or with a defect ear, or whatever else. Then, grieving should be as in any other case, diabetes, defects or whatever. We need to find the best solution.
Just as you accept your kid is diabetic and that they will have to live with insulin treatments, you accept that your kid has this deformation or formation, the way you want to take it Affected 2, Discussion Group, October But negotiating normality is not easy, let alone when it involves sex and sexuality matters. By tabooing this subject we hinder progress within society:. The problem here is to change social outlook […]. If someone has diabetes, one talks about it. So, in my case, why am I stigmatized?
When introducing sexuality, again the support group takes the main role in supporting and caring:. My daughter is still too young, but time will come. And it makes me feel anxious, just the thought of it, what will it be like Parent 1, Discussion Group, October No need to rush. There are options. With AIS, you can live your sexuality fully, in my view. The way you were born. Just like that Affected 3, Discussion Group, October There are many pressures for the decision-making process to change.
Support groups have been providing support and information from a diversity of experiences: some people have undergone every surgery or treatment available while others have refused them; some are satisfied while others are still suffering; some live in secrecy while others empowered themselves and broke the silence. Conforming to Alfred H. They think their needs are unmet, not addressed by existing institutions. The group offers them the chance for sharing experience, knowledge, hope and strength to deal with their conflict. Canals adds that the following elements appear more or less explicitly: a shared problem; a voluntary nature of the organization; a goal of change in the lives of their members or in the way to approach the problem ; some specific purposes related to the shared problem ; a sharing of knowledge and experience; the requirement to operate without professionals; the small size of the groups and the bolstering and strengthening of self-esteem, identity and responsibility.
Behind these features are unmet needs. According to this, support groups are presented as crucial to the process of self-acceptance and empowerment. They would be able to choose and decide freely. So, I look for a doctor who suits me well, who is suitable with what I want. Then, we also need to work on this.
The boundary between documentary and interpretative work enshrined in the quaint distinction between "scholar" and "critic" is as we know a blurred one, but it seems to me that the main achievements of the past decade or so have lain in the former, rather than the latter category. And with all of this, we recognize ourselves in some bases from which to face our doubts and certainties when orienting and taking on future research along these lines. Why am I not like my friends? Any international shipping and import charges are paid in part to Pitney Bowes Inc. According to Parent 1: For an adult; be able to face it, live a dignified life and lead it as naturally as possible.
And what is our responsibility in this? Have I looked for SG? Have I done some research? Have I asked myself? Have I worked on it? Yes, but now the group is visible. The moment you enter Androgen Insensitivity on the Internet, you find the group [Affected 2 replies that first you need to know it exists]. Tell me something new! With this model, if there is considerable share of responsibility and work load displaced to SG, the group will be in need of support and outside resources —economic and human— to deal with demand.
According to Professional 2, there remain more aspects blocking this alternative pathway:. You are developing solutions for really strong and independent people, like this people here. But there can be other persons not willing to take part or get involved in decision making in a MDT. As doctors, we have to contemplate these people who may seek some guidance. We have to develop strategies and find solutions for those persons not willing to be self-reliant Professional 2, Discussion Group, October And this is now our objective.
They only wanted to know about the possible outcomes and whether they will survive. How to make patients more self-reliant? Maybe we can get to the bottom of the question and see if she wants to know Professional 1, Discussion Group, October But, what other obstacles will we face when implementing this new central role within SG?
If patients have an active role in decision-making, they will have to take responsibility for any problems that may arise. Professional 2 clarified:. It is the group that has now this burden. If the group decides the best thing to do is to avoid gonadectomy, for instance, the group is thus responsible if anything goes wrong, if the person develops cancer The responsibility to make a mistake, extended to the patient.
In prevention of certain health problems, legal and moral responsibility lies somewhat with the medical professionals. This type of issues should be considered in proposing new models of shared decision-making between clinicians, patients and parents. Professional 4 stated:. We are talking about interpersonal relationships, as simple as that. You, too, are responsible for that. Doctors have their role and patients have theirs. Yes, but you had the right not to do it. So, why are you blaming me?
Professional 4, Discussion Group, October Both parties, as actors in a situation, have learned a role: some command and lead, others listen and obey, and if something goes wrong patients hold doctors accountable. Most doctors expect their indications to be followed, and they do not accept refusal or negotiation. Patients also fear that, if they do not obey, if they request another treatment or another judgment, or if in some specific aspects they prove to know more than the doctor, such challenge could have negative consequence.
To Professional 4 the ideal model should correspond to the concept of self-care:. What does self-care mean? That patient is given all the information needed to change the paradigm of the doctor-patient relationship. You need to go and ask some specific questions, about genes and that. We are not here to judge you. We are used to complaining and this is a delicate matter. We all have our lofty place. But for a real and effective shared decision-making, as some new research studies expose, we raised that it would be necessary for medical professionals to acknowledge the absence of evidence in the need for early procedures, the lack of studies that propose prospective long-term evaluations of the psychological impact of sex assignment surgeries and also the quality of such studies, which is related to the use of inconsistent methodology to evaluate intervention outcomes Machado et al.
In this sense, Machado et al. Finally, and in order to close the debate, we posed the following question: if the main problem refers to the way our culture understands bodies and sexes, that is to say, sociocultural aspects, in which direction could all the affected actors work?
How can we introduce social intervention beyond medical intervention in the Spanish context? Professional 6 enumerated some possible strategies: 1 To encourage training workshops on sexual and bodily diversity, addressed to medical professionals —doctors, psychologists, etc. I studied that in COU [last year before university]. I understood what they said about it but at no point I connected it with myself.
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It had been always alien and foreign to me. When they explained it, what I saw was a monster, figuratively, something like that. I think that what we need to do is to teach this stuff making it appear normal Affected 2, Discussion Group, October Professional 3 and Affected 1 appeared more skeptical on the relevance of explaining diversity at school:.
In my opinion, what is out of logic is to explain that besides X and Y, that is girl and boy, there is infinite variation. To me, these two possibilities, if everything is alright these are the possibilities. There are people with sublingual thyroid or with no thyroid, so they suffer hypothyroidism. You can tell them there are thyroid variants or liver or pancreas variants Professional 3, Discussion Group, October The change we need is respect of the unknown. Anyway, [that variation] is infinite. And it would be two years instead of one week at school. People are not good or bad, like in Batman.
This is important. There relies respect and good attitude towards difference Affected 1, Discussion Group, October This time out, this need for listening and discussing might be extrapolated to the Spanish context. It is time to stop and listen to all the voices. Patient views and experience must be privileged as they are the ones living within the diagnosis, and search for the best choices together. Only in this way can care be enhanced and can old stigmas be broken. Unquestionably, there remains work to be done.
Admittedly, we have noticed a change of model from what has been expressed in these discussions: new actors have appeared and there have been some shifts in responsibility and care. More specifically, we believe this could be possible by psychologically supporting the intersex in fighting fear of difference.
In this new model, support groups could gain autonomy and eventually become the main actors in intersex care. As with other countries, support groups in Spain could take the relay from the medical professionals in respect of information management and decision-making. Thus, the trend is that active patients emerge as expert agents and lobbies of pressure groups when it comes to structural —socio-health care structure, organization and medical practice—, familiar and social transformations. Support groups are breaking the chain of silence and negative connotations.
Also, they are revealing that sexuality models are plenty of gender stereotypes. In this regard, tools provided by Information and Communication Technologies, such as Internet directories and search engines, have been crucial and will remain so. Llamado intersexual. Children are not disorders [Editor letter]. Archives of Disease in Childhood. Patient Education and Counselling, 83 1 , Cabral, Mauro Ed. Escrituras de la intersexualidad en castellano. Canals, Josep El regreso de la reciprocidad. Grupos de ayuda mutua y asociaciones de personas afectadas en la crisis del Estado de Bienestar.
Negotiating normality: experiences from three Italian patients support group. Creighton, Sarah M. Meeting between experts: evaluation of the first UK forum for lay and professional experts in intersex. Cull, Melissa L. Treatment of intersex needs open discussion.