this conference has started, or the school
has started we have been worrying about the
fact of, that yes coercion is problematic,
force is not the right way to go, but there
is this constant worrying which comes from
several people who say yes we agree that coercion
is not the way to go, but then what are the
alternatives?
We've had thrown at different points of time
when people lack insight, when they can't
decide for themselves, when they don't know
what they want, then what do we do other than
rule forcibly?
This morning's panel is going to be telling
you in both theoretical and practical terms
that when you say no force, there are real
practical alternatives available.
There are values and there are principles
which inform as to why we can't go the force way.
I begin this morning's proceedings by inviting
Nell to do the first presentation.
You're familiar with all the panelists on
here and those of you I will just say that
Nell is teaching at present in Nottingham
University, but more importantly she's been
engaging with this whole issue of people with
psychosocial and intellectual disabilities
and the fact that how and why do you absolutely
need to speak in terms of alternatives to
force.
Nell, 15 minutes.
We'll be going continuously by each of the
presenters using 15 minutes, we plan to finish
by 10.30, last half an hour we want to use
to have a good robust discussion with all
of you.
DR MUNRO: Can everyone hear me okay?
Thank you Amita.
I began working with the field of mental health
in 2001, before that I worked with adults
with learning disability in residential care,
and I found mental health advocacy endlessly
fascinating because of the various ways in
which people excerpted soft power to get people
to take meds.
Always to take the meds, that was always the
choice.
The choice was to take the meds.
There wasn't another choice on the table it
was to take the meds, or in eating disorders,
to eat something!
And so I eventually completed my law degree,
did a PhD which was about why people don't
listen to what patients themselves said they
want to do.
And then became a lecturer at the University
of Nottingham.
And then I became quite ill myself and I got
the meds!
I have epilepsy.
These are my meds, these every morning I take
two of the red ones, one of the white ones
and two of the peach ones and I do the same
thing again in the evening.
And that's good, because that's why I'm able
to stand here today, probably a lot of people
in this room also take meds, of some description,
for various reasons, because we have, our
bodies experience pain, our minds experience
sadness, we feel fear.
Matilda yesterday referred to taking hoar
mopes because she's a trans woman.
We take the meds.
And meds are quite good, if you have epilepsy,
meds are quite handy.
So I don't take the meds because I'm forced
to take the meds.
But for me going from not taking any medication
to taking medication was quite a revelation.
I used to joke to people that there's actually
a school that uses a method autoethnography,
don't do an autoethnographic study of psychosocial
disability, it's a stupid thing to do!
If anyone here is thinking of going out and
doing it.
The first thing I discovered is that nobody
forced me to take the meds.
At no point was I legally required to take
the meds.
But I sat in lots of rooms with lots of doctors
and discovered that it was very, very difficult
for me not to take the meds.
I felt very intimidated by the doctors.
I found it very, very hard to ask questions,
and I would have found it very hard to refuse
to take meds.
And I have a PhD in medical law!
And I had my husband with me.
So if I found it difficult, that would help
to explain why all the people I had worked
with in psychiatric hospitals over the years
also found it extremely difficult to challenge
doctor's advice.
And that continued for a long time, it continued
for probably the first couple of years after
I was diagnosed until I was given a drug Lamotrogene,
for about 10% of people it causes them to
have a rash, it's dangerous, if you don't
stop taking the drug it can cause an adverse
reaction which can be fatal, I'm one of those
10% of people.
The doctor didn't believe me when I said I
had the rash, I got very ill, ended up in
hospital.
After that I got a lot stroppier with the
doctors, when the doctors said you really
need to take this, I said well I'd like a
bit more information first.
This peach drug for example, you really need
to know when you take this, one of the side
effects is psychosis!
I'd like to have been told that before I took
it.
And only briefly when you start it, you get
over it!
So it was a journey, there wasn't an event
where I suddenly felt now I'm an empowered
patient, this is a free choice, I feel comfortable
taking the meds.
It was a journey.
There also wasn't a point where I felt forced,
but there were a lot of points where I felt
I wasn't making completely free choice.
When we talk about alternatives to force we
need to remember that even when we remove
legal force from the equation what we're really
trying to achieve is meaningful choice and
meaningful refusal.
As a patient I now feel I'm at that point.
I make meaningful choices about my treatment
because I am fairly well informed now about
anti epilepsy drugs.
And I can refuse medication.
And I don't know if other people here who
take medication had this experience.
Once you have one diagnosis you often find
doctors push a lot of medication at you.
So it's something that happens to me a lot
is I'll go to see the GP about something unrelated
and they say oh you look really tired, sleep
deprivation can trigger epileptic seizures,
do you need some Sopoclone so you can get
a decent night's sleep?
I'm really tired because I've got two young
children I might need contraception!
But ... but no, I don't think I need more
psycho active drugs.
So I refuse medication quite a bit and I feel
comfortable doing that, but again it took
me a long time to get to this point.
Patients patient education is a huge part
of becoming an informed becoming a person
who is able to make a meaningful consent and
meaningful refusal.
But yesterday after I gave my presentation
I had another transformative movement.
I had a really powerful conversation with
Robina who is here from Uganda the chair of
Pan African Network of People with Psychosocial
Disabilities, and Robina came up to me and
said I was interested you say you had epilepsy
because my mother had epilepsy and Robina's
mother like me raised children, but Robina's
mother raised children with epilepsy in Uganda,
she raised eight children, I have two children,
so she beats me!
And I think raising children in Uganda sounds
like a lot more work than raising children
in Derbyshire in the UK where I live, she
had to grow the food, fetch water, fetch the
firewood to provide for the children.
So she had an enormous workload.
And Robina recalled being frightened when
her mother had seizures because she was scared
her mother was going to die.
So the context in which her mother experienced
her epilepsy and her treatment was entirely
different to the one in which I experience
my epilepsy and my treatment.
And someone this morning mentioned capitalism,
damn right!
It costs 200 pounds a month to prescribe that
drug.
That's not a choice that is available to huge
sections of the world's population.
It's a choice that's available to me, because
I'm a rich woman living in a rich country,
with socialised medicine.
So I don't actually have to pay that 200 pounds
a month, the taxpayer does.
Whoever he is, but nice guy, I like him!
When we talk about alternatives to forced
treatment we need to be thinking all the time
about getting patients to the point where
they have a choice, that choice is a meaningful
choice, they know that their consent counts
and that their refusal counts and that they
have the information that means that they
can make both of those calls.
Now I know that Jolijn and Liz are going to
go on and talk about what we can do to help
patients get to that point.
But those three critical conditions are rarely
met in my country, so there is a huge amount
of work we need to do before we can begin
to think about how we can achieve this globally.
And I'm sorry, I don't know how we're going
to do it, I'm excited that we're having this
conversation, and I would really value, I'm
going to stop a little early so we have more
time for discussion, I value everybody's input
on this conversation.
Thank you.
[APPLAUSE]
PROF DHANDA: Thank you so much Nell, I think
the critical sentence for me there is that
yeah, I'm taking those meds, but I'm taking
them voluntarily and I'm taking them from
an informed place now.
So we'll have Jolijn continue this conversation.
Again Jolijn comes with a lot of personal
experience and the alternatives she's going
to talk to us today, family group conferencing,
inspired from family group conferencing is
something she has devised and tested and she
has a lot to tell us on that count.
Jolijn.
MS SANTEGOEDS: It looks like my file disappeared!
So I'm going to grab my USB.
That also disappeared!
Okay I'll try.
I'm going to talk about alternative model
that I have developed in the context of the
law reform in the Netherlands, I come from
Eindhoven, I mark it had on the map and the
model is called Eindhoven model.
There are a lot of alternatives to coercion
that have been developed all over the world,
such as open dialogue, sub tier houses, wellness
recovery action plans, healing homes, peer
support, there's many alternatives out there,
we'll make sure there will be some information
on that uploaded on the One Drive.
I'm going to speak about this model of family
group conferencing.
I was invited to the law reform in the Netherlands
and it was going the wrong way, so I decided
to make an alternative model myself, because
I didn't think the government would come up
with great ideas.
The current mental health laws, they focus
on when to apply force, and I don't think
that's the right question.
The real question is how can you support a
person in a mental health crisis, in a good
way?
How can you help people?
So I made a list of what should this model
include and I came to this model of family
group conferencing.
Originally family group conferences is an
existing model which comes from New Zealand,
it was developed in the 90s when the Maori
population in New Zealand, they were disowned
from their children and their land by government.
Of course it caused huge resistance from the
Maori population, so there were a lot of problems
in society and at some point the government
realised they could not go on taking away
the children from the Maori population.
So then they came to the idea that they took
the children away because they had disagreements
about how the traditional way of the upbringing
of the children was done, for example the
government had laws and they thought that
every child should learn to read and write
and there should be no violence to be used
in upbringing etcetera, etcetera.
So at some point they asked the Maori population
how would you do it?
And then what they they gathered around a
tree, altogether, and they talked about it.
How can we fulfil the request that the government
has, and then they found that okay we agree
that our children can learn to read and write.
But then they shouldn't learn it from the
white people, but from ourselves.
So they made their own plan saying okay we
can do this, but in this way.
And the government thought okay, we can agree
to that.
So basically what they did, they made their
own plan after the government had set out
these are the expectations.
And this is basically the model of family
group conferencing.
This has then been put in the law, the Children,
Youth and Family Act from New Zealand from
1989.
It says families have the right to make their
own plan first.
And they should be supported to do so.
So basically this has been now a model used
in childcare services mainly, it has been
spread all over the world.
There are many places where they practice
this model, mainly in childcare services,
but for example in Scotland they also use
this for dementia in the community based support.
Maybe this sounds a bit like, family group
is not like the biological family only, it
relates more to extended family.
So it can be also your friends and it's based
on choice.
So basically you identify your own circle
that you want to consult on a key question
in life.
And this is like the institutional, like professionalised
way of reflecting the model, the referral
is not meant as a professional referral, but
people don't naturally know that these models
exist or something has to point them at it.
Then the second step, preparation means when
you make the circle of people there will be
a facilitator and he will make sure that the
situation is safe.
So for example when there is a family member
that is rather dominant they will say okay
how can we balance this?
In practice you see that for example when
there is a dominant father, when you invite
the parents or grandparents that gives more
balance.
So there are practical ways to bring balance
in the circle.
It's a little bit related to circles of support,
that is also a model that has been used a
lot, but circles of support is more like a
long term way of providing support, while
family group conferencing really focuses on
a key question about, it can be anything,
it can be about how can I live in the community,
in a safe way?
Generally the question is phrased in a way
that everybody can agree.
So if I say I don't want to be institutionalised
then people will say but you need to ... but
if the question is how can I live in a community
safe and independent?
People can think okay this is a good call,
if it's safe.
So then the conference itself, it starts with
information, first you put everything on the
table, everybody can give their views.
You can have overview of all the services
that are available or, anything.
Then all the outsiders leave and the family
stay, or the family group, they stay in their
circle alone to, because then they can talk
in their own language and own values and because
the people know each other they can speak
more freely, because the people who know you
better, they also know when you are upset,
it's less scary to be yourself when you are
with your own people.
And the choice is always with the main person,
we call it main person, not user or client.
Then we make the plan and this, the facilitator,
who is not a healthcare worker, but neutral
person who has had the training of just a
couple of days, on how to form the circle
and how to arrange this, the facilitator will
only check the plan to see if it's concrete,
if it has time limits, if there is somebody
monitoring that the steps are actually being
taken.
The focus is on how to find desirable solutions.
And because psychosocial problems are very
closely related to personal circumstances
you have to take the personal circumstances
as the topic of the focus, so that's why family
group conferencing is really focusing on the
person in her life.
So it can combine the informal support and
the formal support, for example when somebody
is scared to go out, persons may say I can
help you go to the shop, I can go with you.
These are actions that are typically not taken
by professional healthcare workers, they have
no time to go shopping with you.
But friends and relatives, they often have
not so much problem in doing these little
things that can be really helpful.
And this means that it's also less demanding
from a professional services.
Also persons themselves, they know very well
what will help them.
For example they need a job or they need to
get out of poverty to feel better so then
they make a plan of how to do that.
In the Netherlands, we started a pilot project
with this model.
There was university research attached, first
we started in Eindhoven where I live, but
it was really hard to find people willing
to do this, because in a crisis situation
the professionals still prefer to use their
own "Safe" ways, but it's totally unsafe because
they use coercion.
So at some point we thought okay to break
all this resistance maybe we should scale
it up and make it more a national project.
So that's what we did.
And then unfortunately the professionals they
took over, they first made a funding application
and they started to use other words.
I lost basically the influence, I was not
listened to and eventually they added more
medical views, they said maybe you have to
drug people before you can talk to them, or
maybe we should have family group conferences
without the main person present when he is
really distressed.
So I was very upset.
Last year the final report came out and I
really cried.
So now I have a new goal, I'm going to start
project again with a good group of people
that have better values and I want to have
this human rights based family group conference
project.
So if anybody is interested contact me.
Thank you.
[APPLAUSE]
PROF DHANDA: So Jolijn has given us two very
solid ideas, one is that when you have experienced
force you know what is wrong with it.
More importantly, that it's possible to use
everything the right and wrong way.
We have had a lot of we constantly encounter
literature on what is sometimes a problem
with the family.
She is also telling us exactly how much of
a resource is the family, how much of support
is required of the family.
But the need for having a range of strategies
so that power asymmetries can be addressed
and that the person for whom the family is
conferencing remains at the centre.
I think that's critical in what Jolijn has
said.
We'll take this further with Liz, and Liz
kind of comes in again from a very solid experiential
and theoretical basis, she'll tell us exactly
the range of alternatives that have been devised,
what works and how.
DR BROSNAN: No pressure Amita, the range!
Well what I want to do in 15 minutes is look
at two main ideas.
Because we have in a way sort of examined
some strategies for change, political change
around the world you work at the local level
with groups of people on the interpersonal,
but then you also try and look at the high
level.
The whole idea is from social change and feminism
and I do think what we are so I'll come to
the high level strategic overarching question
which taps into the themes I'm hearing from
some of the feedback and from two examples
we heard earlier.
I'll just talk briefly and introduce you to
two approaches for working with people in
crisis that are based on non coercive, their
respect and value for human approaches.
Some of you may already be familiar with intentional
peer support developed by Cheri Meade and
Chris Hanson, they have taken this idea coming
from really experience of oppressive, violent,
forceful treatment in different contexts because
they are women who didn't conform to the expectations
of women in their cultures and they are feisty
women who often are the ones who are forced
to retreat to bring into line through the
social control type of process within, structural
process that psychiatry can fill.
So intentional peer support is informed by
trauma, it's trauma informed peer support.
It works, it has three principles and four
tasks in developing a relationship with two
people as peers.
And as equals.
Not that one person is employed to be a peer
and with all of the risk of corruption of
that relationship that can happen when peers
go into mental health services, because inevitably
they fall into the culture and the system
and the way of working, this is a completely
different model.
So it goes from helping model of the expert
to people learning together.
The individual, it takes the focus off the
individual as having problems, working and
developing the relationship together between
two people, so that they're equal and you're
taking the person out of the isolated, that
the person is the problem, in fact the idea
is you work together through relationship
to see people as socially connected, we all
need to be part of communities.
And it moves from the idea of fear to holding
across the idea of hope and possibility pour
change in people's lives.
So the tasks that I haven't time to go into,
but this is really well documented, it's all
available and it's really there for people
to research more into I had the privilege
of being trained by Cheri and Chris quite
a few years ago in the first peer support
project that they set up in Ireland.
And this was an independent one, it was kind
of supported by a pretty good social worker
who was trying to do things outside the system,
so she managed to find ways through an organisation
called Mental Health Ireland who have a little
pockets of really good practice inside another
big organisation.
But to be fair, fair play to them they are
supporting some of these small little projects
that can make a difference.
Another Irish example, that one is, they set
up a house called Aras Full On which is in
Tipperary, working on these principles, because
we were trained by Cheri and Chris.
So these are the tasks in relationship, you
build connection, you share a world view,
you don't impose a model, you find what it
is the person believes is happening in their
world and works with that, you work together
as a pair, as equals, no hierarchy, you find
your level as human beings and you work on
that.
Then you always work towards trying to find
solutions to the problems.
So another project that started in Dublin,
which is called Gateway, that was even more
independently run and developed by peers.
So we have, that's called gateway and both
of those were actually evaluated by a team
of researchers in Trinity College who used
participatory methods and trained service
user researchers to do the research and evaluation,
with these two projects, leaders and people
that went to them and they actually wrote
a report and launched it last year, about
the value and the way that these peer support
projects work, and they work on this basis
of being equals together, nobody is the expert,
and so I invite anyone who wants to look that
up and to read it.
You can find it on MentalHealthIreland.ie
their website, they have this report of the
evidence, this is something we're always searching
for to come at the medical model, the evidence
that this work, this approach works for people
who want to who are given the freedom to do
it properly, without the professional take
over that Jolijn talked about.
Another model I'll talk briefly about is the
Soteria model houses, that is the idea that
an actual place is, a physical house is in
the community is available for people to go
to in crisis, it's non medical in that it's
not run by doctors, there may be people who
have training in psychiatric support meds
approaches but it's not, there might be nurses
working in it, but it's always run on a non
medical basis.
In the sense if a person who is going into
it needs medication, has their own medication
they can bring it.
But they are never ever forced to take it.
So people can or not, medication is an available
option if people have it prescribed and bring
it with them.
So there's no forced treatment.
The value, the idea is to walk together with
the person on the journey.
But unfortunately the experience, since this
model was tried by, initiated by one of the
hero psychiatrists we talk about, because
there are sometimes good people try to make
change, since that was started by Loren Mosher,
they've often been closed down, quite often
because it's because the local traditional
service feels they don't like this model and
they used the legal or whatever funding to
close them down.
So you can there are chapters in, about this
model in many books, you can find it online
and the reference I'm going to give you to
look it up is on a website called Mad in America,
because that's a collection and an introduction
to a whole lot of these ideas for these alternatives
to coercion.
So that's moving from some of the local examples,
there are many of them.
And we won't have time for me to certainly
tell you about the plethora of them that's
around the world.
These are local, small, individual efforts
to make a difference, to offer people support
and alternatives to having to, in a crisis
have no option or no alternative but to need
to use the mental health system if it's there.
This is very much a western perspective, I'm
aware of that.
So in our experience here in the west, especially
in Ireland we're fighting an oppressive practice,
an oppressive hold, because I think psychiatry
is an industry, there is jobs in it, people
are employed, it's a whole system and layers
of power.
Yesterday Laura was talking about trying to
explain some of the many different levels
of layers of power and it is really complex.
But all of these power structures are upheld
by really strong systems of power in themselves.
Psychiatry is upheld first of all, I thank
the person for mentioning capitalism this
morning, because these are the things that
are not often talked about, in a big structural,
bigger macro picture of what's going on and
what is it that keeps force in place.
So you have the psychiatric industry held
up by medicine, the power of medicine, to
control our lives, to give us the answers
and so on some hand we see the benefit of
medicine when it's based in things that are
happening in our bodies and like Nell, I too
am really grateful for a particular form of
medication that keeps me alive.
But that's different.
I choose to take that, it's not something
that's ever forced on me.
I find it helps me.
Whereas my experience with being forcibly
injected feels like a repetition of the trauma
that brought me into the system in the first
place.
So we also have the legal system pinned up
and supporting the power of this industry
which is, you've heard about the systems,
the structures, and the whole power of the
legal system.
And I was quite struck by, you know when you
hear a Professor of law talking about the
proliferation of work and jobs and industry,
when we have the whole legal structures that
implement, regulate the power and force of
psychiatry to pick us up and off the street
or anywhere else, from our homes which is
one of the reasons I thought it was maybe
good that you heard some of the for those
of you who are academics or studying this,
those of us who lived through it know this
intimately, what it's like to be taken out
of your home, to be taken away from the street.
Back in the 90s there was a woman called Lindo
who used to speak about it being akin to being
kidnapped, you were taken out of your usual
environment, your home, people break down
the doors, that study we listened to, Mary
Keys talked about yesterday, people break
down the doors, strangers come in a black
van and break down the door if you don't open
it.
They have the right to do this in law.
Pick people up and bring them away, they don't
even have any responsibility to feed the pets
or animals that might be in the house.
And they have absolutely no requirement to
actually close the door behind them.
So people have gone back and found the front
door was left open in all the time they have
been locked up.
And this is all underpinned by medical, and
in my experience of sitting on mental health
tribunals for a while as a lay person I became
horrified at the practice of some legal people
who were using this as a cash cow.
Then we have big pharma and we think there
is a lot of corruption in the whole research
field and how, and the construction of evidence
in around the pharmaceutical industry in the
psychotropic medication where they are frantically
trying to find a cure for something they can't
locate in the body because there are no tests
or anything to locate the disorder in the
body.
It may be different when somebody acquires
a definite brain injury through, and there's
a part of the brain that's physically injured.
And some people now are beginning to argue
that trauma and all of the experiences of
adverse experiences that people can experience
as children, war, poverty, all of these things.
That they can leave an impression on the brain,
but to think that that can be fixed by something
as blunt as a chemical drug is, it doesn't
make sense.
So basically I'm saying we have a big oppressive
industry that is upheld by capitalism, by
the law, by all these structures and systems,
and it's a bit like the point that was made
by our colleague up here through Spanish,
English has become when you think of the difficulty
of trying to change the way that the world
relies and uses English, I think in a way
psychiatry is become the same, it's almost
unquestionable, this is the language, this
is the way things are done.
So is it possible to reform that with soft
means?
And I do think that value of local interactions
by people, people do things in small ways
for themselves in among community, and sharing
that practice with each other around the world
is really, really important.
Sometimes it's something that's never ever
talked about is the value of the principles
and way it's done, in that it's done, I think
if we were working with each other in a way
of love and rarely love is talked about, because
in the rational enlightened society, love
doesn't really figure.
I'm talking about love not in the way it's
corrupted but in the pure sense of compassionate,
equal, dignified relationship.
So if we bring this love into relationships
with each other, perhaps we can change it
on a small scale.
But in terms of a bigger alternative to I
want to mention an initiative that's started
by Tina Minkowitz through her work at the
centre for human rights of users and survivors
of psychiatry.
In 2016 she collected online 41 cases of people
telling their stories about civil society,
to support the work of the CRPD Committee
to show that civil society supports the CRPD.
Then lately she started an online network
and part of that network, some of them are
looking at the legal side and some of them
are looking at collecting evidence, of all
the useful things happening around the world,
so we can show them that there are different
ways of doing this and do it by showing them
that it can be done differently and then it's
the start of something that is about trying
to get civil society in some ways to show
the committee that this legal reform is necessary.
So I'm going to leave it at that.
Thank you.
[APPLAUSE]
PROF DHANDA: Thank you so much Liz.
Three ideas for me here, one let's not think
of force as just innocent or something which
is coming from a set of people who don't know
what else to do, that there is a very there's
a vested interest in force.
There's a lot of people who kind of require
it to be there, and consequently alternatives
are faced with the sort of beleaguering or
the sort of taking over which needs to be
watched for.
The other big thing she spoke about is the
power of love, the necessity of having equal
respectful relationships and the fact that
larger structures in society should not prevent
that from happening.
We come to our last speaker who again has
straddled both the area of theory and practice
and I think Bhargavi is best describing what
she'll be doing, what she has done and what,
the alternatives she has to offer for us today.
MS DAVAR: Morning everyone, I'm really sorry
to turn up like a bad penny!
I promise this will be the last time!
I'd like to start by saying that from the
global south perspective, medical legal coercion
is probably less than customary, normative
cultural coercion as found in families and
within communities.
That's easy in some ways and difficult in
many other ways, because we really need I
like what Liz said about having local actions.
And so I think we'll be presenting more from
that point of view, that we are dealing here
with more of cultural customary coercion,
and we are looking at local action.
Again I have a few slides, only as an aid
to what I will be elaborating.
I start with some of the visions that we had
when we started the Bapu Trust work about
15 years ago.
In Bapu Trust we dream of healing environments
where every person uses their own capacity
to make choices, heal themselves, recover
and move on.
We also envision that recovery methods will
be creative, non violent, non hazardous and
playful.
When I put my presentation with all the stuff
that we are doing in the programme that adds
colour, play and fun into the support work
that we do.
Later on as we started moving in the communities
of Pune we found the vision is still a bit
individualistic, over a period of time we
learned a lot from the altruism, solidarity,
mutuality, connected connectivity that people
enjoy in the slums of Pune and we changed
our vision in this way.
Now our vision is to create emotionally sustainable
and inclusive communities, of course we hope
to also get into the CRPD with this new vision.
I want to share some core principles of our
programmes, it helped to us build up our work,
and also connect with many of the programmes
that were discussed here.
In the last year I have been travelling a
lot, many of us from Asia have been travelling
to different spaces where we're talking about
alternatives to coercion and also new ways
of reclaiming communities and building new
ways of life.
I want to start by making this difference
between voluntarism and choice.
Essentially the CRPD makes us think about
choice as a way of creating opportunities
for inclusion, and I want to say that voluntarism
which we talk about informed consent and will
and preferences is still largely used within
a medico legal context and within the context
of medical treatment, choice is much more.
And inclusion needs choice, not just voluntarism.
So I've got a statement here on one side you
have elements on the voluntarism on the other
side you have elements of choice and I do
believe choice is more CRPD compliant than
voluntarism.
There are many aspects but in terms of time
I want to focus on two main differences, within
the frame of voluntarism is means users say
I will agree to take what you offer, I consent
to what you offer.
Whereas when it comes to choice it means asking
what all do you have at your disposal as skill
sets to offer me?
Another difference is when it comes to voluntarism
it also means if I don't take what you offer,
then I will have to face the consequences
of my refusal.
Whereas in terms of choice it means that the
user is suggesting to the support provider,
if you don't have what I need you just don't
have enough.
So you need some more skill sets with you.
So voluntarism is about single transactions
between the doctor and the user and it is
legally bound, usually by the mental health
laws and associated laws.
Whereas choice is about the availability of
different supports and services in the community,
and it is about the user's accessibility to
those in nearby areas.
So I really like the notion of using choice
over voluntarism.
Voluntarism by the way in CRPD occurs in local
places, particularly in the healthcare article,
but choice is in every article of the CRPD.
So for me inclusion of choice is the antidote
for cure or coercion.
In the learnings here this morning and through
the last years of exchange, with different
user led, survivor led disabled people led
programmes coming from the west, and our own
experiences in the global south, I have identified
four key elements as really needed as antidote
to coercion and expanding choice.
I've got them here as bullet points.
Number one, I think this is really the priority,
being well and staying well strategies.
In between crisis, what do you do, be well
and stay well.
The second one is peer support, we have heard
success stories from peer support systems.
Also of course the failures when it gets co
opted into different levels of policy frames,
but I'm talking about peer support where people
are being bound by government funding, legal
mechanisms and all of that.
The third point is dialogue systems, whether
they are with families, communities, neighbourhoods
or service providers, having active and mindful,
something just thought about, having dialogue
systems going.
And crisis support.
So I would identify these four as well key
elements of alternatives to coercion and you've
heard it right through, whether it's intention
peer support, family conferencing and all
of that, different varieties of this, the
open dialogue, so we hear about many of these
alternatives to coercion falling within one
or the other of these four domains of support.
In Asian cultures we found that peer support
is not only by a fellow user but by anybody
who shares social, economic, cultural experiences
of marginalisation and exclusion.
The peer support model that is are, that we
hear about are still within the one to one
kind of model, we kind of expanded this to
our own cultural experience of hanging out
together in groups, not specifically on our
own.
And so for us we have a rather very well structured
programme of group support.
Life story, we do many activities in these
groups and also I think it phenomenally increases
the potential for support within the community,
because there are so many people with mutuality,
mutual support giving and caring in that group.
We work extensively building capacity for
supporting and caring, particularly with families
but not just with families, we also work a
lot with communities in the neighbourhood,
so if there is a person with psychosocial
disability at a particular point, then we
work around them and try to identify who is
the person closest to them, who is the closest
emotionally, who is the closest neighbour
who is caring so and so, and then we build
it.
I don't believe care giving or support giving
is a natural human thing.
I think it has to be learned.
So we do a lot of stuff, for example de escalating
aggression within households and communities,
building non violent communications, building
day to day daily simple peace practices, being
attentive to and addressing basic needs for
example food and fluid when somebody is not
eating, you notice that and start taking steps
already.
In a supportive way, not in a controlling
way.
In our work whenever we talk about dialogues
we don't have anything like trialogue or open
dialogue, which is so structured, but we do
have our own structures, open ended structures,
bringing different people into dialogue when
somebody is facing a crisis.
We did this training in Sri Lanka, we asked
one person to act as the person with the psychosocial
disability, there were 120 people in training
with us in that session, we made them stand
in spiralling circles around this person and
we gave each one a blank white paper to fill,
they had to fill in the role how they will
support the person at the centre and our one
rule was that is you cannot repeat this.
So you have to come up, each person had to
come up with something new.
And believe it or not, somebody was a milkman,
somebody was throwing newspapers, somebody
was managing cattle, someone was a doctor,
someone was a nurse, whatever, but each had
something to say as what they could offer
by way of support.
So in Pune we organised two different kinds
of negotiation structures, one is what we
call circle of care, which is benign and we
will come around very willingly to participate
in care giving for a person.
We also, when we want to push a little bit
we have what we call confrontation meetings,
when it's a bit more, we might call in the
local religious head, or might call the local
policeman or might call the local women's
organisation person, so on and so forth and
we start pushing moral questions at the families.
And usually of course we have some recalcitrant
families which that takes another turn towards
legal solutions, but usually people do turn
towards what is the right thing to do.
It's also really important to reach out and
deal with people when they come out of crisis.
We say in our programme that not every situation
is a crisis and we should keep ourselves de
escalated and cool to make more objective
assessments.
Self care is a big part of our work in the
communities and also for all of us who are
working as teams in those communities.
In crisis support it's difficult to okay this
is a word salad that I made of different things
we do.
In crisis support it's difficult to talk,
also generally in Asia people don't like to
talk a lot, they are not very expressive linguistically,
but we have various other forms of expression.
So we have breathing practices and relaxation
methods, a lot of community drumming, visualisation,
music, body and movement, sound making, paints
and colours and so on.
So many of us in the group, particularly the
senior monitoring and mentoring group, we
are trained as integrated arts based therapists
which again suits us culturally.
When people go to Asia they see noise, I hope
you also see the colour and the art, there's
so much of that.
Since we have a wide range of skills to offer
we wait to know from the person what they
like and what they will like to pursue.
It may not always be in language but we get
to know, sometimes we laugh about it because
when they see the Bapu Trust team coming some
people run away, okay we're doing something
wrong here!
We should try other methods.
And we're able to address diversity of needs
because there is so much to offer.
It's not just us, we ask anybody around to
us help us and people do.
And this is the last one, just so that you
don't think that you've gone really crazy
with all these different things going on.
Our programme is fairly structured and we
have what we call a modular arrangement of
interventions, and we call it eight point
recovery framework in which there is peer
support, working with the person on strengths
and resilience, we work on well being, self
care and that.
Social capital is a concept that really floods
our programme, because we are constantly contacting
partnerships, people in support, people who
go on home visits, all of that, so we do a
lot of that through social friendships and
people going to join some sporting group or
identity group or whatever, so we do a lot
of work on social capital.
Self and self care, nutrition is again big,
we do these inclusion and I described two
of those strategies, one is confrontation
meetings and the other is circle of care.
And then we have really big gestures of walking
the community through awareness programmes.
It's been a pleasure for being here I thank
you all for really patient listening and look
forward to meeting you all again.
Thank you.
[APPLAUSE]
PROF DHANDA: So what Bhargavi has kind of
stressed in principle and shown in practice
is that you can't really speak about voluntarism
without choice.
You can't say that you can choose for yourself,
we want your consent and then not really give
any options.
All the four presenters have different ways
brought home to you that there are enough
and more alternatives to coercion and it's
possibly important for us to start engaging
with those alternatives.
With that I open up the discussion to the
house, first set of questions or comments.
