Thank you so much.
Thank you so much, Christian.
Thank you so much to the co-organizers, especially to Agata,
for putting this together in such an effective way.
So thank you very much everybody for staying
here despite the time. And I will try to be quick,
but I will also try to be clear because I think
there is kind of a change of paradigm compared
to the previous presentations. So I hope it's
not too traumatic. The title of the presentation
was supposed to be vague because my idea was to
try to fit my own research with the agenda of the
conference and experiment a little bit with what
I'm doing at the intersection between epistemic
injustice and patients' participations,
in particular in biomedical research.
That's where I work. I'm working between these two topics,
even though epistemic injustice is quite new to
me. And I have to say that probably I'd like to
have your opinion on that if my way of seeing it
is maybe too irreverent in comparison to what was
supposed to mean and serve. So my talk is going
to be divided in three parts. The first one
is going to discuss how do we understand childhood.
The second one is how does
a biomedicine understand childhood. And the third
one is helpful and interpretative resources.
So what I'm working on is on the other side of the
coin, which is not trying to understand what are
the kinds of arms, of epistemic arms that we
can suffer, but rather what are the kind of
interpretative resources that we can mobilize in
order to not commit injustice, epistemic injustice.
So starting very basic, what might be epistemic
injustice in persons? I want to be very open
and broad here because I think it's already
beginning of understanding how children can
suffer epistemic injustice. And it's about
cognitive reliability, emotionally, instability
in case of illness, existential as well as existential.
And this is something that
in a way allows healthcare professionals
to deflate the authority that epistemic
knowers might have. In the case of children,
especially in biomedical settings, it is very
clear that children are considered vulnerable
first and immature. These two conditions make
them particularly in an underdog position, in a
very unprivileged position, and very susceptible
of receiving paternalistic approaches.
What I will try to do then is try to answer to this question.
How do we acknowledge children as knower and
epistemic agents in context that define them
precisely as those who cannot know, particularly
when knowledge production is biomedical
institutional, in which I think that there are
many layers of authority and different epistemic
approaches to what are children and what are
they supposed to be within biomedical research.
So the first question I'd like to address from
the perspective of collective interpretative
resources is how do we understand children
according to social imaginaries? And there are
many studies since the 70s, 80s, especially
starting to study within the field of sociology
of childhood and interdisciplinary studies on
childhood that define childhood in different ways.
And within the philosophy of childhood identified
four main ways, which are the children as
parents' property, children as becoming instead
of being, children as right owner, and children as agents.
So we are going to see these four
ways in which children have been understood
through history and also the history of philosophy.
And then we will see if in biomedical research
this applies or not and how. So the first idea is
child as parent property. This is a very ancient
idea and reading this year, the Nemean-Cometian
Ethics of Aristotle, it came clear to me that
it comes from there. So Aristotle compares the
sovereignty of man over his children to that of
a father over his children. So even though they
are not exactly a thing to be owned, they are
part of their parents. They belong to their parents.
So parents can decide for them.
Over the years and through history, many
interpretations of this idea that children
belong to parents have found applications.
Patriarchy and paternalism are based on this
idea and maybe the most extreme idea is the
one proposed by the British philosopher,
political theorist, in his book Patriarchy, in
which he defends absolute monarchy on the basis
of the fact that the government follows the
organization of families and as children belong
to parents, then the subject, I cannot remember
the word in English right now, but the Englishmen,
the people, the regular people belong to the
sovereign, to the monarch. And this was a
justification to say patriarchy is something
justified by nature. So is this an idea that we still have?
To see if this is the case, I
rely on my own fieldwork. As a philosopher,
I conducted fieldwork for two years in a
hospital, in a public hospital in Spain,
and I was very surprised to meet, so I
interviewed parents, families and professionals
in situations in which teenagers were involved
in biomedical research. And in one case,
only one case I have to admit, a mother said,
well, my child participated to this study,
he didn't really have a choice because I decided for him.
And that's it, I didn't even discuss
with him the informed consent form because it
was a lot of reading and I didn't think he would
read it anyways. And this was interesting to me
because it was quite extreme. And on the other
side, I could talk with the child and the
child had a very strong opinion about the
participation in clinical trials and also was
very eloquent in manifesting his interest,
his concerns, and as well, the things that were
important to him. And also the fact that he didn't
really want to read the informed consent
form because this was important for him,
what was important for him is that also his
father was participating in a similar trial
and he was confident that it was a safe trial and
this was enough for him to decide to participate.
So when we talk about epistemic injustice, do we
talk only in medicine and in biomedical research?
Do we talk only about the medical doctors, the
healthcare professionals, or do we talk also
about the parents themselves who might have
certain ideas of what their children should be?
So that was the idea of child as part of the parents.
But there is also another idea and
interpretation of what is a child. And the child
has been interpreted for a long time as becoming.
A child who is someone who is going to be an
adult is in a potentiality of becoming someone.
And this idea basically opposes to part of his
life, a life of immaturity and a life of maturity.
So a life of immaturity in which they are
inadequate, they are vulnerable, they are
weak, dependent, ignorant, and passive.
And a life when they become mature and then they are secure,
they are strong, they are independent, they
have knowledge, and they are autonomous.
And so the interdisciplinary studies
on childhood make a strong emphasis in
criticising this way of seeing child children only
as some people who might become someone else in
the future because they actually have a present
and their present should be taken into account.
And this idea of becoming is nevertheless grounded
in liberal political theory. And I found this
reading, the two treatises of government of John
Locke, in which he comes back to the idea of Aristotle.
He believes that children belong to
their parents but also criticises the idea of
the patriarch because he says that it's not for
the whole life of the children that children
belong to parents because there is a certain age
in which they become citizens, in which they become
people who can do politics. And still in this
vision there is the idea that rationality and
autonomy are the most important part of life of
children to change the status from children to adults.
How did I find this in my work?
So in my work I met Tony and his mother and Tony was 17
years old at the time of the interviews and the
mother was like, we talked to him in order to
decide whether he was going to participate or not
in the clinical trials because he's already quite mature.
She was in this discourse that he's almost
18 years old so he has to be empowered and he has
to take responsibility for his decisions.
And so she was in these terms of, yeah, we are going to
include him because he can do it and he's in the
age in which he's almost legally responsible for that.
And he reinforces that because he said he
was interested in participating in what this would entail for him.
But he also was very specific on
what he was interested in. He was interested on
the practicalities. He didn't really care about
the technical stuff, the scientific stuff,
the science behind the clinical studies.
He said I just want to know how many times I have to come
and what this implies for me for the rest.
I don't really care. In these lines of the becoming,
so children who are still not being in themselves
but they are people who are developing,
there is this strong idea of parents which is
recorded in many interviews, of the need of protection.
So as parents we need to protect them.
And Diego's mum says, I didn't even let him read
the informed consent form since it's not legally
binding because he was 12 at the time.
But the main idea was that she didn't want to overwhelm him.
And this was everywhere in my interviews.
Many parents were in this dynamic of let us
protect him and then we took the decision for him.
Well, things have changed and especially
since the late 90s there have been a number of
international charter and convention on the rights
of the children under different respects which
goes from sexual abuse or child labour or just
the UN Convention on the Rights of the Children
which we start to think that children should
have their rights on their own. This goes
toward the idea that children should be beings and not becoming in a way.
There is this idea of taking children seriously
and considering children as subject of moral and
political theory and also moral and political action.
And so the ethical rationale of advocating
for children as right owners is that they should
be considered as ending themselves as in the
Kantian tradition and the objective is to change
their status in their life. Some of the rights
that are claimed for children are more
claimed for social and economic rights.
Some others concern more civil or political rights.
But what is the problem with that? Even if we claim that
children might have rights, this doesn't really
change their status, their moral status as
political and ethical agents because in most of
the rights like rights to provision and protection
there is still a hierarchy between parents who
should provide and who should protect and
children who are those who are protected.
So they are owners of rights but they are not actually agents
in this sense. And also in the sermon of rights
of autonomy and claiming that children should be
recognised as the right of autonomy there is a
reinforcing of the idea that what is important in
the state, in the government, in society is this
idea of the individual or the state and that is
proclaimed by the liberal theory rather than
other kind of political theories that might put
the focus on some other aspects like care or
interdependencies or other aspects that we are
going to see later. So in my interviews, why am
I here putting some questions mark on the right owner views?
Because in my interviews I found that
all the children starting from 12 years old were
asked to read the informed consent, the informed assent form.
The parents were reading the informed
consent form but in many cases what
happened was what Elena's mum said to her.
She read the informed assent and she was concerned about the
side effect and the mum said "don't worry because
they have to tell you about all the medication
and that's it, nothing will happen".
So she was comforting the child about the side effects
explained in the informed assent and then she
asked to the child "are you still sure you
want to participate?" and to me it looked like
is this even fair? The child is raising questions
about sensitive issues but no one is taking into
consideration that she could lie participating
in clinical trials. It is clear that this is not
one of the most dangerous clinical trials because
it was about atopic dermatitis and it was about
putting creams on her skin but still some negative
things could happen and it would have been
interesting to address them and the fact that they
were not addressed then to me it was revealing that
I talked to her and she was like "I was shocked
when I read the informed assent form because they
were very legal and very medical stuff and it was
very strange but nothing more". So she came to a
point when she also dismissed the concern that she
had probably because the mother confirmed that it
was safe at the end, I don't know, but I think it
was quite unclear. So at the same time Elena had
the right to read the informed assent form as a
legal mean to protect her rights to decide.
At the same time was it real? Was it a real participation,
authentic participation? The last account of
children of childhood. The last account of
childhood defines children as agents.
This account has been proposed by the sociology of
childhood and especially an account that I've
become particularly interested in which is voices,
views on interdisciplinary childhood ethics.
This is an account of ethics that contraposes
to pediatric bioethics because it tries to see
children more in a holistic way as agents and
as being on the time and also claiming agency,
not autonomy but agency, which is trying to
understand what are the different capacity to
act deliberately, to speak for oneself and
to actively reflect on their social world.
And so trying to push researchers and healthcare
professionals to see the different ways in which
children might express their agency which does not
correspond to the agency that adults might have.
Two examples. In this slide we have the case of
Clara who is a clear example of an agency that
could be an agency of an adult. She claims that
she really wanted to be in the study because she
wanted to become a medical doctor as an adult.
So she has a passion for science. And then she says
I was a bit disappointed because I wanted
to know more about the science of the study.
So how the molecules worked and what were
the mechanism behind the pharmacology of it.
But they only gave me information in the form
of sense about what I was supposed to do.
So I think this is a clear example of agency.
We can understand this kind of agency.
So her going and asking and taking decisions for herself.
But on the other side, we have the
case of Diego which resonates more with the other
young interviewees that I mentioned before because
it's a bit more ambiguous. Like Diego says I
didn't really ask anything. I didn't want to talk about it.
I just listened to my parents
talking about it. And while listening to their
conversation I made up my mind about the
study, about my participation and stuff.
So is this agency or isn't it an agency?
According to childhood studies, childhood ethics, what I
understand it is a form of agency. But it's a very
different form that we should accept somehow and
try to understand how to work with it.
So besides these four different ways of seeing children,
what I find particularly interesting about
childhood is the imaginaries that we have
in our life as individuals.
And that corresponds to many different ideas about
also our life conditions, the way we live in our ages. Like my parents,
they were 24, they already worked, they had
a house, they owned a house and they had two children.
And to me, when I was 24, I was just a baby.
And this is what happens now with the changes,
the social changes in our society. Life expectancy
is much longer and there is this idea of extended
adolescence or midlife crisis that are quite
modern phenomenon. But they all contribute to
this fascination with childhood. And at the same
time, they come with new dynamics between different age groups.
So we now have sometimes conflicts
between generations, baby boomers and millennials
and all these discourses about different generations.
The new millennials or younger
children now, teenagers now claim they have
the right to, they can claim the right for
environmental justice, which is something that
we didn't even think of. And then there is the
issue of intersectionality because of course
not all children have the same experiences or
have the same conceptualisation, same opportunities and so forth.
So, given this panorama, I think it's a basis of
where the biomedical understanding of childhood
come and interact with children.
But there is an extra layer which is strictly biomedical.
So, biomedicine as being objectifying children as
usual, as the third person rather than the first
person perspective. The evaluation normally when
you get in touch with children, you have to evaluate
if they have decision-making capacity and this
sometimes is kind of difficult to assess whether
it is effective or not. And then the biomedical
understanding also depends on the legal status.
Most of the time and most of the biomedical
discourse goes around the age distinctions
and they have very strict age distinctions.
So, you have premature, you have newborns,
you have infants and then you have children
from 2 to 11 and teenagers from 12 to 18.
In this way, it is operationalised in a kind of framed way.
But does this relate to the experiences of children?
Does a child, a teenager of 17 can
be compared with the experience of one with 19?
And why or why not? So, these are all very big
questions and most of the biomedical rationality
about how to treat children are based on
psychology and the child development approach
in which there is an ideal of the normal outcome of development.
And this approach has been criticised because it has several biases.
The first one is that most of the studies were conducted with
boys rather than with girls and then they were
generalised but then it was found that it was not
completely applicable. Then there were also
ethnocentric biases and the problem that all
these perspectives were much more focused on the
third perspective and not the first perspective,
so not the actual experience of children.
How does this resonate with clinical practice in
clinical studies, at least in my interviews?
So, many professionals had this ability approach
perspective which is clearly biomedical but also
at the interactional level with children.
So, a doctor conducting clinical studies were saying
when they are small children it's more challenging
but then when they start to become to an age in
which they behave and can communicate like adults
then it's easier. And then there is the double
phase, so the judgment of the ability of the
children but also there is the professional side
of the coin which is like they're still working.
So, for them it's the difficulty of being
a professional and doing something that is
difficult for them because they don't understand.
And also it's tiring, so they have to deal with
the child, they have to deal with the family, so
being with a child in a room it's something that
generates to them emotions and difficulties that
often are not talked about clearly and loud but
they are still there when you try to ask them
these kind of questions. Within the medical realm
there is also this strong epistemic privilege
because many parents told me they decided that
their children would participate because they were
talking with the medical doctor and the
medical doctor suggested it was a good idea.
And in this case Miguel's father said if the doctor tells me
to go ahead I go ahead. And so there is this,
I don't put into question what experts say.
And finally, it is true that we should
never generalise and in my fieldwork I could
really prove that doctors and healthcare
professionals have very different perspectives.
In this case I put two quotes, one from
a medical doctor and one from a nurse.
I don't know if it depends on the different kind
of trainings that they have and the different kind
of relationship also that they have with the
patients, but from the Honden the doctor said
I don't even ask or talk with the children because
they don't ask questions so I assume that they are
not interested in knowing anything about the study.
While the nurse says I try to adapt to them and to
their communication skills and abilities because
they ask them questions but I also want to ask
them questions so they can be more engaged and
find ways of being involved in what's happening.
So until now I've tried to make a problematised
account of how do we understand children in
society as a whole, how under this background,
against this background, how children can be
understood in biomedical settings and then now I
would like to propose something. So propose some
interpretative resources that might help both
teenagers or children and healthcare professionals
in making sense of their participation.
And this account came to me from the reading of Merleau-Ponty
in which he proposes, based on studies in
phenomenology as well as in psychology and
anthropology and sociology, he makes a proposal
of considering a child as a non-deficient adult
and considering his own characteristics,
so his own ways of perception, expression,
social experience. And so what he basically
proposes is inspired by Gestalt theory which is
a way of doing psychology which is very opposed
to the developmental approach that I mentioned
before because it's, I would say, much more
holistic and it provides a view of the child
as looking at the whole picture and not just as
individual events, as if the development would be
a stage-bound mechanism. But it's rather a way of
reorganising meanings, it's a way of reorganising
understandings and their own way of interacting with others.
What is interesting in this account
of Merleau-Ponty, I think it's that of course it
starts from his phenomenological perception in
which the body, it's the base, the body is
what we are, from the body is what we know,
the body is what allows us to know our
surroundings, but it's also the way in which we interact.
And what he says is that since the
beginning, since they are born, children interact
with others and with these interactions they start
making meanings, even though they do not speak
since the beginning, and they still may have meanings.
They have some meanings that might
exceed our own meanings because we are already
trapped in the meanings of language, but they
actually can rework these experiences and
then interpret actively what happens to them.
So what he says, and maybe this is my
philosophical side which is not very
pragmatical, but I think we should start with
no pragmatical thing to actually be useful
many times, which is that children have
this exploratory wave mode of existence,
and many parts of their experience are opaque.
They have an excess of meaning, they have a
"residu sauvage" which means they have a wild
region which we cannot really get into.
So the child is an embodied subject, it is an
intersubjective experiencer, he is creative, he is
open, she is open, she is situated in culture,
and she is much more than measurable traits.
So the quote that I like from him is that the
connection between observation and action,
between theory and practice, is never a
matter of pure knowledge but one of existence.
And that's the whole difficulty of grasping what's
happening to them, but maybe that's where we
should start from, rather than making theory and
then seeing if they apply to children's life,
maybe we should start from the children's life and
then building the theory from them, knowing that
there is something that we cannot really grasp until the end.
I'll go back to political theory
because I think that this idea of what is a child,
how is a child understood in biomedical science
has a lot to do with our understanding
of our society, our society as a whole.
We live in liberalist societies and maybe it's also an
attentive answer to Christian's question about
what is care, what is l'accompagnamento, how
can we understand it. And to me it's a political
standpoint, it's a political epistemology
which allows us to centre on relationality,
interdependence and vulnerability.
So it's the way in which we understand that society is not
making of atomistic people who never really
converge on something. It's rather a world where
we need the relationship to be at the centre
that can actually help to theorise all the
interactions that happen with children
in healthcare settings. I will conclude very quickly.
So how do children participate
nowadays in clinical studies? They can be either
research participants as the teenagers that I
interviewed or they can be consumers, they can be
considered as citizens owning the rights to
participate or they can also be considered
as collaborators and co-investigators.
This is something that I really like because I feel like
since 2000 there has been a group of international
young persons advisory groups which work in Europe
but also in Japan, in Canada, in the United
States, in Africa, in which adolescents are
involved in clinical studies as co-researchers.
So the medical team asks them suggestions and
advisors on specific points. I like the idea
but I ask, is participation the mere fact of
making them be there and asking them questions
enough for authentic participation or isn't there
just a risk of asking them to be there but if we
have this way of seeing childhood, understanding
childhood which is biased by our political,
societal and life understanding of what is a child,
can we really listen to them? So when we have
children collaborate with biomedical scientists
they have to go through an educational process.
After the educational process then they are asked
questions on specific topics but what are all
the biases and the epistemic injustice that we
actually act during this pedagogy moment before
we actually ask them questions. So this is my
work in progress. This is where I want to work on
and understand what are the limits of participation
if there is epistemological biases that do not
allow us to be just while we actually try to
make a change to be just. And to conclude, this
might seem very theoretical but to me it could be
actually quite transformative if we make this
change of mind that we consider that this could
actually be the base of regulations and if
we understand that now healthcare system and
biomedical research is in an epochal change
because we are trying to change the paradigm
from evidence-based to patient-centered
biomedical research. And if we do that then
how do we want to do it? How are we going to work on that?
My suggestion is that we analyse the
epistemological and political assumptions and
presupposition that we had in understanding children.
Thank you very much.
>> Thank you. So questions, comments, please?
>> Okay. Hello. Hi. So I'm Michaela.
Thank you so much for that presentation. Also you laid a
lot of groundwork for my presentation tomorrow
because I'm dealing with the histories of
children in medicine. I'm currently working in
Germany and there's always this tension between
what is a legal adult, right, with the idea
of 18 years and then when is a child deemed
einwilligungsfähig or able to consent?
And a colleague of mine, she's now a historian of
medicine but she was a Fachärztin, so she worked
in paediatric oncology for a number of years.
And often what we kind of try to teach our
students who are all medical students
is to think differently about children.
But we don't really have the tools to do that.
So there's a couple of scores, tests, et cetera.
I think there's like the MACAT competency test that's
usually used for patients with neurodegenerative disease.
But that's again equating questions of
consent with people with neurodegenerative
disease to children, which is problematic in its own way.
And also these tests often prove
or often find that people who actually are able to
consent are deemed unable to. So they're highly problematic.
I was wondering during your study,
what tools did you see put into practice?
Because obviously having conversations,
asking questions, it's a very unclear, uncertain way.
And of course, within medicine, you want
clear guidelines and clear questions in
order to create protocols and best practices.
And I was curious if you don't mind just elaborating on,
was there a particular method or do you consider
that your approach could create a particular
method that could be employed? Because that's
on the ground, I think what is really missing right now.
Thanks. Sorry, that was very long.
Yeah, thank you very much for your inspiring question.
I think it's very interesting and
to think about it. And I was also in the position
of working in a hospital on these topics.
And I found that this push toward operational liberty or
operationalization and being effective and clear
and measuring things doesn't really help.
And there is no solution. That's why my presentation
was a conundrum of childhood experience, because
I think that maybe this is not the approach.
So my suggestion would be just, so we tend to say
that we are safe if we have clear guidelines.
And then we say, okay, we just ask people, children
for assent when they are 12 years old.
But does this guarantee the people, the children actually
assent on that? So my suggestion would just be,
I understand that we now have this obsession that
we have to prove that it is helpful or that this is clear.
But then why don't we prove that the
assent is effective? So my way of working with
that would be not considering abilities,
not assensing the ability of the children,
and actually talking with each child who is
engaged in biomedical research or in biomedical
settings in trying to make sense of what he
understands or she understands and find a common pattern.
Because the point is, even if they
understand and they make a decision, they might
change their mind. So there should be a continuous
dialogue in which you know that you are talking to
a person and this person might have a different
parameter than yours. And maybe the person,
maybe you want to provide this information to
them that is in the informal sense, but maybe
they don't care. And most of the people I
interviewed, they didn't really care about
information on how many times they had to go to
the, but some did. So I think it should be much
more relational. That's why I was going toward
the care ethics, which I know it's not optimal,
but I think it's a way to support Merleau-Ponty
view on the child. But I really think we have to
go to leave this obsession of assessing capacities
and abilities, because I think that's not where we
we can find assurance that consent or assent is effective.
And it's more like building it
day to day, even if it seems like time consuming,
but I think it's more time consuming if there
is things that aren't spoken at the end of the day.
But I would like to talk with you after the talks
and connect and know more about your work.
Sí, muchas gracias. Can I ask in Spanish?
Pues muchas gracias. Me ha parecido interesantísimo.
Ha habido un montón de cosas que me han interesado
mucho y además me parece que está muy bien esto
de llevar la cuestión de la agencia epistémica
al caso de los niños, porque hay muy poca literatura
y es un caso yo creo especialmente complejo.
Y te quería preguntar, pero una cosa relacionada con esto.
Me ha gustado mucho esta idea de que
de Merleau-Ponty, de que la infancia es como un
modo de ser, un modo de existencia, no recuerdo
cómo lo has dicho, y que al final convertirse en
adulto es algo más parecido a una transformación
que a un llegar a ser lo que se supone que uno
tiene que llegar a ser. A mí la verdad es que
pues me ha parecido una manera bastante provechosa de verlo.
Lo que te quería preguntar es cómo se
relaciona esto con la cuestión de la agencia
epistémica, porque hay una... bueno, si entendemos
que la infancia es... o sea, si entendemos la niñez
o la infancia como dentro de la concepción esta
de llegar a ser o convertirse en adulto, como
un paso hacia la vida adulta, pues esto como que
sugiere una visión de la agencia epistémica como
algo gradual, que es en lo que se puede ir avanzando,
puedes tener diferentes grados de agencia
epistémica, los niños puede que tengan menos,
los adultos más, y esto, bueno, esto te permite
explicar un poco por qué, pues en todos estos
casos el adulto tiene que explicar al niño
cómo funcionan las vacunas o lo que sea,
tiene que responder a sus preguntas, tiene que
adaptarse a la manera de entenderlo del niño,
pero ahora si nos vamos a esta visión en la que
lo entendemos como un modo distinto de existencia,
¿qué diríamos de la agencia epistémica de los niños?
¿Que tienen otro tipo de agencia epistémica?
¿O cómo encajamos todo esto?
Gracias por esa pregunta. Yo creo que sí.
Yo creo que estamos acostumbrados a pensar en agencia en términos
cuantitativos, o sea, soy más o menos agente, pero en
realidad podemos ser agentes de diferentes maneras.
Lo que yo he visto en mis entrevistas es que mi
manera de leer y de escuchar a estos niños era que
no es que porque no querían leer el consentimiento
informado y que no fueron agentes, ellos tomaban
sus propias decisiones, pero la manera de tomar
decisiones, o sea, ellos tenían otras prioridades
y miraban otros aspectos, y yo creo que esto tiene
que ser respetado y comprendido. Entonces de esta
manera para mí la agencia es una agencia
diferente, es un poco en la línea de los
Childhood Ethics. Carnevale, que es un investigador
de la McGill University en Canadá, que ha fundado
esta idea de Childhood Ethics, ellos hablan de eso,
ellos hablan de cómo a lo mejor no es que ellos
tengan menos agencias, sino que nosotros no
somos capaces de ver qué tipo de agencias actúan.
Y esto viene todo de un libro histórico
de los años 80 de Miriam Blubon-Lagner,
que escribió "The Silent World of Dying Children",
que es una antropóloga, y es una de las primeras
que trabaja con niños con leucemia, con un
diagnóstico que se iban muy probablemente a morir,
casi todos se han muerto después de su estudio,
poco a poco, en el cual ella ve que hay una relación
entre padres en el cual los padres intentan
proteger a los niños y los niños perciben que
los padres sufren, porque de alguna manera hacen
como si no supieran del todo. Ella habla de una
mutual pretense, de los dos lados actúan como
que si no fuera tan grave, como que no fuera tan
difícil, evitar de hablar de eso para
seguir jugando el papel del niño enfermo,
entonces seguir jugando un papel al interno de la
estructura social y de las dinámicas familiares.
Y yo creo que es una agencia, o sea, yo
creo, toda la literatura que habla de eso,
habla de una agencia de los niños en ese
sentido, que aunque no sea lo más obvio,
evidente para nosotros, ¿por qué denegársela, sabes?
Pero no sé si bien he contestado a tu
pregunta, si te satisface, como respuesta.
- Es que era justo eso, como lo estabas viendo,
como otro tipo de agencia, gracias a ti.
- Voy a decir una pregunta.
I'm going to check the online participants.
To the people who are online, if you would like to
ask any questions, just raise your digital hand. María.
[inaudible] Gracias.
Cuando ponías en la transparencia estas
cosas que Merle Ponte decía sobre los niños,
yo pensaba en realidad, pero bueno, es verdad
que a lo mejor me había perdido el foco,
pero yo pensaba, bueno, esto no se puede predicar
de todas las personas, que lo que yo veía era que
no había ahí nada que yo pensara que era
intrínsecamente. O sea, me lo he pensado cuando
has dicho, los niños tienen una parte, o no
es como preservan un lado salvaje, o bueno,
en realidad, claro, la variedad humana hace
que todos podamos sentir que eso representa
la singularidad de todos los pacientes.
- Sí, gracias María, me parece súper
interesante como reflexión. Y es verdad, pero
en un cierto sentido sí le veo todo el sentido,
en otro sentido me pregunto, pero bueno, es
que no existen escalas de, a menos que no hayas
adultos neurodivergentes, los adultos no lo
intentamos labelizar de alguna manera o poner
en categorías como hemos hecho con los niños.
A lo mejor es una manera para reivindicar que como
no lo hacemos con los adultos, porque tuviéramos
que hacerlo con los niños, ¿sabes? Porque siempre
hay esta idea que con los niños hay que ver qué
edad tienen, qué capacidad tienen para implicarlos, no implicarlos.
A lo mejor simplemente reconocer que son como adultos, o sea,
que como merecen la misma autoridad epistémica
de los adultos, pero el simple hecho de que nunca
sabes con quién te enfrentas al final, nunca sabes
con quién vas a hablar, yo creo que merece la pena
reconocerlo luego. Si es específico de niños o
no, no te sé decir, probablemente no, es verdad
que en la residuación va a ser un poco para todo, ¿no?
Pero al mismo tiempo nos ayuda a
volver a ver a los niños bajo esta lente, con estos
ojos, que al parecer hasta ahora no lo hemos hecho.
Gracias.
Hola, bueno, gracias, estuvo muy bueno, y
me parece que estaba muy bueno el punto,
pero bueno, un poco como poniéndome del otro lado,
digo, así como hablamos de la autoridad
fundada de los médicos, por ejemplo,
¿qué pensás acerca de seguir manteniendo como una
posición de autoridad para los padres o para los adultos?
Bueno, en el sentido de que ellos también son responsables, ¿no?
Como los adultos, los padres, somos
legalmente responsables por nuestros hijos,
y digamos, algún valor tiene que tener también
la experiencia, y el acceso que tenemos a la
información también es diferente. Digo, me parece
bárbaro pensar también desde la, o sea, darle ese
lugar a la perspectiva del niño, o sea, en un
mundo que es muy adultocéntrico, pero bueno, eso.
Muchas gracias, Leticia. Es una pregunta
difícil, yo creo, porque es verdad que hay
un sistema jurídico, hay que respetar la
legalidad, pero yo creo que hay diferentes
maneras de hacerlo. O sea, porque tú me estás
hablando también de, al final, quién toma la decisión, ¿no?
Si debería ser el niño o si
debería ser el padre, pero yo creo que se podría
ser en conjunto. Y por eso es importante repensar
un poco la figura del niño, porque muchas veces,
como padres, hacemos cosas y lo tratamos de
alguna manera, asumiendo por ello cosas que
a lo mejor no somos justificados en asumir.
Como la madre que decía, yo he decidido por él,
y él va a participar porque me parece lo
mejor del mundo participar en ese ensayo.
No sé, yo espero no hacer eso como madre,
yo creo que sería una injusticia epistémica.
Al final, yo soy responsable por él, pero mi experiencia,
lo que puede hacer es informar a mi hija,
hablar con ella desde mi perspectiva, pero al
final que ella sea empoderada a hacer preguntas,
no simplemente a tomar la decisión o no,
pero que pueda hacer preguntas, que pueda
explorar diferentes alternativas y estar en
alguna manera involucrada en lo que le pasa
al alrededor, y sobre todo si tiene que
ver con su salud. Entonces, en ese sentido,
yo no estoy proponiendo, no soy tan radical
como proponer un cambio del marco legal,
aunque me gustaría muchísimo, pero todavía
no tengo los argumentos para poderlo hacer.
Pero yo creo que sí podemos cambiar la manera en
que hacemos las cosas al día a día, sobre
todo, y es lo que a mí me ha aportado leer
el grupo en ti, de Childhood Studies.
¿A ti?
Hola. Vale. Yo tenía una, bueno, más que una pregunta,
una reflexión sobre… Lo siento, es algo pequeñito.
Es que me estoy acordando de un caso
de un chico que tenía como 17 años y era enfermo de leucemia.
A este chico, por influencia de su
familia, por influencia de la madre, le fomentaron
el rechazar la quimioterapia y optar por terapias
alternativas, y el chico terminó falleciendo.
Es una leucemia que se puede curar bien con un
tratamiento quimioterápico, pero al final terminó falleciendo.
El punto al que quiero ir es que
realmente hay algunos casos en los que los niños,
independientemente de los que le consideramos
agentes o no agentes epistémicos, están muy
influenciados por su entorno, tienen una racionalidad
muy… y dependiendo un poco de la edad también
son más influenciables o menos. Y me parece como
mucho riesgo darles una autoridad, la misma
autoridad epistémica que a los adultos en
esas circunstancias en las que, bueno, como
el caso de este chico, o juicios para ver,
para determinar si esta persona tenía suficiente
capacidad para decidir o no el rechazar esa terapia y lo otro.
No sé, me parece que es arriesgado.
Muchísimas gracias por ese comentario porque
creo que me va a permitir a lo mejor aclarar
algo que a lo mejor no ha sido tan claro,
que es esta diferencia para mí que hay entre
agencia epistémica y poder decisional.
Y otra vez, aquí parece que ha habido como un
contracircuito porque el hijo ha sido influenciado
por la madre, pero alguien ha hablado con el hijo,
alguien le ha preguntado el qué pensaba, él
ha tenido la posibilidad de hacer preguntas,
de tomar una decisión alternativa.
Entonces, lo que yo estoy planteando no es tanto que
tienen que tener la misma agencia, adultos
y niños, sino que haya una interacción,
que esta interacción se salga y se reconozca.
Entonces, si no fuera un tabú y si se pudiera
hablar de eso, a lo mejor el centro médico
mismo hubiera creado un espacio en el cual
se puede interactuar y a lo mejor extrapolar
que efectivamente este niño no estaba
de acuerdo con su madre y no quería.
Pero si este niño estaba de acuerdo con su madre, ¿qué?
Al final, no puedes obligar a las
personas a estar en vida o a hacer cosas.
Entonces, entiendo que es muy dramático y muy triste y
muy radical, pero probablemente la madre se
hubiera muerto si ella hubiera estado la
persona enferma. Entonces, ¿qué cambia?
Si ha muerto un niño o si ha muerto la madre.
No sé. Para mí son preguntas abiertas,
pero sí es verdad que al final lo que le
decía un poco a Leticia, el poder decidir,
yo creo que es una cosa diferente de la agencia,
pero la agencia para mí de los niños es cuando
ellos tienen espacio para preguntar y para
poder decir lo que para ellos es importante.
Eso no necesariamente quiere decir que ellos
van a decidir o tener última palabra, pero
ahí hay cosas para explorar que merecen la pena explorar.
Esto me estaba pareciendo muy interesante.
La distinción está entre agencia epistémica y
poder decisional, pero entonces quería volver
al punto anterior de la discusión esta que ha
habido sobre la autoridad epistémica y tal.
Porque, claro, al final, si estamos diciendo
que la capacidad de tomar la decisión finalmente
no tiene por qué recaer en el niño, ¿cómo
justificamos esto si a la vez la idea es que hay
simplemente agencias epistémicas diferentes y
no grados de agencia? Muy interesante esta pregunta.
¿Cuál es la parte que hay que justificar?
Si concebimos la agencia epistémica de los niños
como simplemente una agencia epistémica diferente
de la de los adultos y no un grado diferente,
entonces ¿por qué van a tener un poder de decisión menor?
¿De dónde emergen? No, no estoy diciendo
que tienen poder de decisión menor.
Yo digo que hay que hacer una diferencia, pero es que si
consideramos al niño como un ser relacional,
también reconocemos que la decisión que va
a tomar no la va a tomar completamente solo.
Y esto los adultos también. Lo que pasa es que
nos cuesta admitirlo. Pero muchas veces cuando
tomamos decisiones, tomamos decisiones porque
nuestra comunidad nos ha inculcado algunas
creencias, porque estamos en una familia que
tiene algunos valores. O sea, nunca somos sujetos,
yo creo, completamente independientes.
En el caso de los niños, yo creo que lo que hay que
reconocer es que sí, que tienen una cierta
agencia, que en esta agencia es plenamente
interrelacional y que probablemente las decisiones
que van a tomar dependerán también de lo que
piensan los padres. Ahora, la pregunta
bioética, ¿quién tiene que decir, qué decidir?
Yo creo que de un punto de vista legal no lo podemos
cuestionar a esta altura, porque de un punto
de vista legal son los padres los que le deciden.
Luego, si queremos cambiar el marco legal,
yo soy la primera a decir, bueno, hacemos
esta conversación y vemos cómo lo jugamos.
Pero yo ahora no estoy planteando eso, ¿sabes?
Yo simplemente estoy planteando la idea de que
adentro de esta relacionalidad, los niños
también tienen una capacidad de agencia
que es diferente, que es interrelacional,
¿cómo la incluimos en las conversaciones?
Esto es mi problema. ¿Cómo hacer que emerja esta agencia sin
hacer injusticia? Porque a mí me parece injusto,
epistémicamente, evitar de hablar de eso.
Y es lo que está pasando en muchos hospitales
al día a día, que los niños, o sea, que cada
uno, que cada profesional lo interpreta de alguna
manera, cada padre lo interpreta de alguna manera,
y al final me parece que la involucración del
niño no es efectiva ni eficaz por esto, no hablar
de los puntos de vista epistémicos de cada uno.
Gracias.
So, thank you very much.
Thank you.