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C’est un garçon!
L’expérience maternelle
Kate Lindley Scheidegger, PhD
30 mars 2017
Les trois messages clefs
l Si vous voulez aider les enfants, il faut
aider les parents. Les mères assurent
majoritairement la charge quotidienne des
enfants.
l La maternité est un apprentissage. Nous
n’avons pas d’instinct maternel. Nous vous
aimons en partie grâce à l’ocytocine.
l Avoir un enfant avec une différence
nécessite un apprentissage
supplémentaire.
1
Parents
«[P]arents’ concerns, hopes, fears and
decisions regarding their babies largely shape
the conditions of that individual’s life.
[P]arental adaptation to the condition may be
the most important factor for determining the
child’s quality of life; the question remains to
what extent encounters with medical caregivers
and current treatment foster their adaptation or
hinder it.»
Karkazis, K. (2008: 178-9). Fixing Sex: Intersex, Medical
Authority, and Lived Experience
Edward, né en décembre 1984
2
Klinefelter male
l Many men who have Klinefelter
syndrome do not have obvious
symptoms. Others have sparse
body hair, enlarged breasts, and
wide hips. In almost all men the
testicles remain small. In some
men the penis does not reach
adult size. Their voices may not
be as deep. They usually
cannot father children. But they
can have a normal sex life.
l Some boys with Klinefelter
syndrome have language and
learning problems.
Bruining et al.
l KS is the most common aneuploidy with a
prevalence of 1 in 700.
l Only 10% to 25% of expected diagnoses
of KS are made before puberty.
l Recommend that all boys with behavioural
and cognitive/learning problems be
screened before the age of 10 for KS.
Bruining, H., Swaab, H., Kas, M. & Van Engeland, H. (2009).
Psychiatric characteristics in a self-selected sample of boys with Klinefelter
Syndrome. Pediatrics (2009)
Retrieved from paediatrics.aapublications.org
3
l Clinical features (%) of adult patients with Klinefelter syndrome l Small testes (
Professionnels vus ou consultés avant décembre
2000
1. Dr. R. Bandelier, gynécologue
2. Dr. D. Mottu, pédiatre
3. Dr. M.P. Favre, pédopsychiatre, Service Médico-Pédagogique
4. Dr. Perez Crim, psychiatre, Service Médico-Pédagogique
5. Mme Zwahlen, logopédagogue, Genève
6. Dr. L. Luka, psychiatre
7. M. Jeanneret, psychologue
8. Consultation urologique, HUG
9. Dr. Ch.-A. Haenggeli, neuropédiatre, HUG
10. Dr. V. Desmangeles, neuropédiatre, HUG
11. Dr. C. Aubert, psychiatre FMH, thérapeute de famille
12. Mme C. Tidmarsh, psychologue scolaire
13. Mme Levrat, psychologue scolaire, Collège du Léman
14. Mme de Marcellus, psychologue ASP
15. Mme Steffen, assistante sociale, Service de la Protection de la Jeunesse, Genève
16. Mme B. Schmitt, psychologue-conseillère, Assurance Invalidité, Genève
17. Dr. M. Plesea, dentiste-orthodontiste
18. M. Piguet, inspecteur scolaire, Genève
19. Mme Jacquemet, inspectrice des classes spécialisées, Genève
20. Mme Pellaton, enseignante en classe spécialisée, 3ème primaire, Meyrin
21. Mme Stalder, enseignante en classe spécialisée, 4ème primaire, Meyrin
22. M. E. Rossier, Directeur, Ecole Maya Joie, La Fouly
23. Mme Dugerdil, Directrice, Ecole La Passerelle, Genève
24. Enseignant(e)s dans les écoles publiques et privées : Mme Bavaud, Mme Planche, Mme Iovino, Mme Street, etc
L’expérience de la mère d’un enfant
dit “différent”
Lindley Scheidegger, 2011 Dessin par Pécub
5Le jour du diagnostic
“Just having a diagnosis,” one patient said,
“means the rest of your life can start.”
Kathryn Montgomery, How doctors think, 2006: 65
“Medical students are taught that there is a
diagnosis for every condition, and that
every condition has a defined set of
treatment strategies.”
Deborah Lupton, Medecine as Culture, 2003: 127
Un nouveau monde s’ouvre
6Ce que j’aurai voulu avoir
Ce que j’ai reçu:
l Une explication
l Une explication non-
médicale et
compréhensible
compréhensible du
l Une interrogation constante
diagnostic des médecins basée sur
l Du soutien d’un leur curiosité (sans
groupe de parents bienveillance)
d’enfants similaires l Aucun groupe de soutien
l Un psy de l’école l Une abondance de psys
avec des théories psycho-
thérapie narrative
dynamiques peu aidantes
La recherche sociologique de Preves
« Throughout my research, I have heard
stories of powerlessness, violation,
reclamation, and personal empowerment.
Interview after interview, participants shared
stories of feeling scrutinized and sexualised
by medical professionals, of being treated
as oddities and freaks, of lacking control
over their own bodies, and of the resulting
shame and secrecy of such experiences. »
Preves (2008:9)
7La mère est supposée être un endroit
où l’enfant est en sécurité
Personal problems / public issues
« So, when adults encounter a healthy baby with a body
that is not ‘easily’ sexed, they may understandably
experience an inability to imagine a happy and successful
future for that child. … But most parents don’t find a real
need to address these questions until years after a child’s
birth. … (I)t is my contention that parents and caregivers of
intersexed children don’t need to be so concerned about
addressing the ‘personal’ troubles of their children either.
Rather we should all turn our attention to the ‘public issues’
and problems wrought by unwavering, merciless adherence
to sex and gender binarism. »
Preves, S.E. (2008:12)
8Judi Herring, MD « Gender Bound »
TedXTalk Jacksonville
l Our fixation on genitals is so entrenched in
our cultural mindset that it serves as a
functional reference to how we relate.
l « Different » is compatible with emotional
and psychological well-being.
l https://www.youtube.com/watch?v=TZkcGZrupEo
l https://www.youtube.com/watch?v=TZkcGZrupEo
You’re a mutant
9Disruption of identity
“This disruption of identity occurs whether a
person learns of their sexual ambiguity or
later in adult life. The reason that learning
the ‘truth’ about one’s sex is so jarring
because it differs from how they viewed
themselves before that moment.”
Preves, S.E. (2008)
Parcours après le diagnostic
l Unité de crise pour adolescents UCA, HUG
l Centre thérapeutique du jour, SMP
l Psychiatrie Belle-Idée, HUG
l Tutelle depuis 2003
l Vit de manière autonome depuis novembre 2003
l Rente AI complète
l Substitution hormonale commencée à l’âge de
23 ans, suivi par Dr. P. Meyer, endocrinologie
HUG
10La construction de l’identité
l « Being labeled as a misfit, by peers, by family
members, or by medical diagnosis and
treatment, is no doubt a challenge to one’s
identity development and stability. »
l « Negotiating identity, one’s basic sense of place
and self, is a challenge for many of us, and is
potentially far more challenging for people
whose sex is called into question. »
l Source: Preves, S. E. (2008: 4-5) Intersex and Identity, The
Contested Self
One wish by Lynell Stephani Long
“But if I had one wish, this is what I would wish for: I wish
my mother had asked more questions, and done some
research on her own. I wish she hadn’t taken the doctors
for their word, and I wish she had listened to me when I
told her what my desires were. I wish she was told that
her child being intersex does not reflect on her as parent.
Sometimes children are born different than how we have
our hearts set.
Unfortunately, she put all of her trust in the doctors at the
University, and prayed they could turn her ‘son’ into a
male. Maybe with more knowledge, patience, and
understanding, my mother would have had the tools
needed to be a great parent”
(Chapter 6, Thoughts from fellow parents and from adults
with DSD, ISNA, 2006: 90)
11Les questions pour les parents
l Est-ce que son identité de genre est innée
ou acquise?
l Quelle théorie va nous aider?
l Qu’est-ce que nous devons faire pour
accompagner notre enfant?
Ce que j’ai fait
l Bachelor en psychologie 2002 (41 ans)
l Master en psychologie (2006)
l Doctorat en sciences sociales (2009-13) :
The social construction of a mother’s identity amidst the confluence
of motherhood discourses
l Formation en thérapie narrative (2010-16)
l Création d’une association SAMED –
Soutenir et Accompagner les Mères
d’Enfants « Différents » (2016)
12Thérapie narrative
Elle propose une déconstruction des relations de
pouvoir dans lesquelles l’individu se sent isolé et
enfermé face à son problème, puis la
reconstruction d’histoires alternatives dans
lesquelles les individus retrouvent une relation
avec leurs rêves et leurs aspirations.
Un des grands points forts de l’approche narrative
est de savoir guider l’individu dans la recherche et
la reconnexion avec ses ressources cachées,
celles qui n’ont pas été prises en compte au regard
de leur histoire.
Deconstructing discourses
l “In whose interests is the discourse operating?
l What (and whose) values, beliefs and
concepts are espoused, and what others are
neglected?
l What pre-established knowledge or belief
systems are drawn upon to create meaning?
l What types of social differences are
established or perpetuated?”
Deborah Lupton,
Medecine as culture: Illness, disease and the body,
1994:55
13Est-ce que je suis un garçon ou une
fille?
l Qu’est-ce que tu aimes faire?
l Qu’est-ce que tu n’aimes pas faire?
l Qu’est-ce que tu fais bien?
l Qu’est-ce que tu veux faire quand tu es
grand?
l Tu te sens plutôt fille ou plutôt garçon?
C’est quoi, d’être un garçon?
Contacts
l www.samed-association.ch
l Soutenir et Accompagner les Mères
d’Enfants “Différents”
l drkatelindley@gmail.com 079 626 1586
l www.drkatelindley.ch
14Bibliographie
l Belliger, A. (2014) Gesundheit 2.0: Das ePatienten-Handbuch
l Griffin, J. (2016) Parenting a disabled child In Therapy Today, October 2016
l Karkazis, K. (2008: 178-9). Fixing Sex: Intersex, Medical Authority, and
Lived Experience
l Lindley, K. (2013) The social construction of a mother’s identity amidst the
confluence of motherhood discourses. http://www.taosinstitute.net/kate-
lindley-scheidegger-dissertation
l Lupton, D. (1994) Medecine as culture: Illness, disease and the body
l Preves, S.E. (2008) Intersex and Identity: The Contested Self
l Shakespeare, T. (2006) Disability Rights and Wrongs
l Thomas, T. Shut That Kid Up, Motherhood as Social Dislocation, Journal of
the Association for Research on Mothering, Vol. 3, No 1
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