—
By Sean Graham
“Before I had my two children, I had a miscarriage.” This is how Alicia Yamin starts her new book Power, Suffering, and the Struggle for Dignity: Human Rights Frameworks for Health and Why They Matter. By introducing the book in such a personal manner, Yamin, the Policy Director of the Francois-Xavier Bagnoud Center for Health and Human Rights at Harvard University, prepares the reader for what is to follow. In interweaving personal stories, Yamin demonstrates how health should be situated as a human right and, in doing so, represents a major turning point in the struggle for dignity.
The great challenge in studying broad concepts in matters with very real world ramifications is that the writing can feel distant and cold. To alleviate this concern, Yamin incorporates case studies from her vast experience working in the field. By humanizing these seemingly abstract issues, Yamin is not only able to hook the reader but also establishes a narrative voice that guides the reader through the book.
At its best, Power, Suffering, and the Struggle for Dignity attacks the preconceptions and assumptions that have inhibited the implementation of a human rights framework for health. For instance, in the introduction Yamin cites the too-often-used phrase “there but the grace of God go I” in discussing a general apathy towards the issues on the part of those in privileged positions. By casting the inequalities in health and healthcare to divine providence, the real-world human decisions that have fostered and expanded inequality are easily dismissed or ignored. As a result, too many people unnecessarily suffer from indignity without intervention.
These inequalities are often the result of discrimination based on race, gender, and poverty – issues that are beyond the control of those that don’t have access to health. Many of Yamin’s examples are related to maternal health and mortality. From the sexual, physical, and emotional abuse perpetrated by the men in her life to losing multiple children to AIDS and malnourishment, Yamin outlines how one particular woman had been denied agency throughout her life for no other reason than she lived in an impoverished region. The decisions that led to that poverty were well beyond her control – often made on the other side of the world – and yet we too often believe the myth that we all reap what we sow.
In reading Yamin’s book, the reader is confronted with the fact that, despite our North American claims to individualism, we live in an inter-connected world. Adopting a collectivist mindset, which would accompany the de-commofidication of life, could go a long way in reducing suffering and allowing people to live with dignity. Too often, that is reserved for those in a position of privilege, which is why, as Yamin rightly points out, implementing a human rights framework for health should be a priority for governments around the world.
In making this argument, however, there is an inherent risk of colonialism. In addressing this, Yamin notes that her case studies are based off her lived experiences. Despite the majority of her professional career taking place at Harvard University, she notes that she has lived half her life outside the United States, oftentimes as part of the communities with which she works. As an attorney, this was central to her legal work, but it also makes the book much more personal and enhances the argument.
A great, if difficult to read, example of this comes early in the book as the first chapter discusses Yamin’s time living in Mixcoac, a working-class neighbourhood in Mexico City. The area had no washing machines at the time so once a week a woman and her daughter would come to do the laundry. This women would often discuss her abusive husband and how she was scared to leave, mostly because she could not support herself and her daughter on her own. When she didn’t show up for work one day, her family feared the worst. Her badly beaten body was found a couple days later and her daughter was never found. Despite the evidence against him, her husband was never charged.
While this may seem like a judicial or domestic violence issue, Yamin situates this painful personal story as a health issue. If health were understood and situated as a human right, this woman would have been able to leave her abusive husband without fear of reprisals or being unable to provide for her daughter. Providing the social and cultural support for women and children suffering from abuse in the ‘private sphere’ is very much a public issue that can be helped by situating health as a human right.
In a similar vein, pollution, poverty, and colonialism are all issues that we can examine through a human rights framework. This is what Yamin so effectively conveys in Power, Suffering, and the Struggle for Dignity. She clearly discusses the legal, social, and cultural issues that shape our understanding of health in an engaging and personal manner. The book is powerful in its use of first-person accounts without feeling exploitative, a difficult balance for any researcher of traumatic events.
In this episode of the History Slam, I talk with Professor Yamin about the book. We talk about her personal experiences, defining human rights, and what constitutes health policies. We also talk about colonial mentalities and the challenges of combating the commodification of life.
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Video Transcript:
00:05
welcome to the history slam podcast from
00:07
activist read CA here’s your host Sean
00:10
drea Thank You Adam up into the history
00:15
slam everybody I am Sean Graham coming
00:17
at you today nearly live we are in
00:19
boston massachusetts we have crossed
00:22
over the Charles River from Cambridge
00:25
yet we are still on Harvard campus area
00:28
where the Longwood area which is where
00:31
all the doctors and nurses and medical
00:35
folks are located because there’s a
00:37
bunch of hospitals around here but we
00:38
also have the public health program
00:41
which is here and we are fortunate
00:43
enough to have Alicia Eamonn a lecture
00:47
on law and global health the director of
00:49
the JD mph program and is also the
00:52
policy director here at the
00:54
francois-xavier bhengu center that’s a
00:58
lot of titles welcome to the show thanks
01:01
very much so we are here today to talk
01:05
about the new book just out still hot
01:08
off the press it’s a 2016 release
01:10
entitled power suffering and struggle
01:12
for dignity Human Rights frameworks for
01:14
health and why they matter you’ve
01:17
written a lot about public health and
01:18
the idea of Human Rights associated with
01:22
health so I’m just wondering this
01:24
particular book what was the push to
01:27
publish this this book brings together a
01:30
lot of personal experiences over my
01:33
lifetime it’s not a traditional academic
01:37
book it’s it’s filled with certain more
01:40
ethnographic accounts and stories of
01:44
individual people i think that the
01:47
impetus was one what’s going on in
01:50
global health where they’re really two
01:52
stories one is a very positive
01:55
optimistic story about immense progress
01:58
we’ve made in chem
02:00
adding some major public health’s
02:04
Courage’s and in you know I think being
02:08
on the cusp of a lot of biomedical
02:11
advances that would for example possibly
02:14
make some forms of cancer into chronic
02:15
diseases on the other hand a darker
02:20
story that is about really gaping
02:24
inequities in the enjoyment of that of
02:28
those conditions and access to care
02:30
within countries and between countries
02:33
and those gaping inequities that in some
02:37
cases are actually increasing instead of
02:39
decreasing to me speak to in justices
02:44
but the mainstream public health
02:46
community still deals with these
02:50
questions in in quite a technocratic
02:53
vertical intervention type approach so
02:57
it seemed essential to bring in a just
03:00
as a social justice and human rights
03:02
framework the second reason I wanted to
03:07
write the book in this way is that not
03:12
very many people understand what the
03:14
links between human rights and public
03:16
health might be and there aren’t very
03:18
many accessible materials about that and
03:21
again I’ve written it in a way that I
03:23
hope bridges students people who are not
03:26
familiar I love it when friends tell me
03:29
oh yeah I took it with me when I got my
03:30
hair done or I was right reading it on
03:32
the bus or but the materials that are
03:36
around on human rights based approaches
03:38
to health are often very formulaic as
03:41
though you could reduce human rights to
03:44
a kind of app or something and that is
03:46
all so it’s sort of a it’s a push back
03:49
against that trend too because we were
03:51
just talking before we went on and I
03:53
mentioned that we had had one of the
03:54
curators from the Museum of human rights
03:56
in Winnipeg on last summer and we talked
03:59
with her about you know the concept of
04:01
human rights and what constitutes human
04:02
rights so I’m just wondering for you
04:04
then you mentioned that it’s not this
04:06
easily digestible thing that so many
04:08
people want to do like Bernie Sanders
04:10
for instance says health is a human
04:12
right doesn’t really define what who
04:14
mean by human right so for you what what
04:17
does the term really come down to I
04:19
think when Bernie Sanders says health is
04:21
a human right which it is considered to
04:22
be in many countries around the world
04:26
the United States is an outlier on that
04:29
the idea is it health has something
04:32
fundamental to do with human dignity
04:34
that it has some kind of special moral
04:37
importance that it’s not just another
04:40
market commodity to be allocated by the
04:43
price mechanism and that’s a lot of what
04:47
I mean the book is about how patterns of
04:50
health and ill health are determined by
04:53
power relations and structures and
04:55
society pathologies of power is pulse
04:58
arm farmer calls them and and also about
05:02
how dignity is somehow essential to our
05:05
being humans and having life choices and
05:09
plans and a lot of the time in health
05:12
and public health we don’t fully take
05:16
that on board and is it really come down
05:18
to an issue than of equality as you
05:20
mentioned that in this country we’re
05:23
sitting most of our listeners are in
05:25
Canada but gear there’s a notion that
05:28
there’s an inequality in health and
05:30
naturally what people like Bernie
05:32
Sanders and the president tried to get
05:36
after and it seems as though the
05:39
difference then between a first world
05:42
country in a third world country would
05:44
be even worse than the divide
05:46
domestically here and is really that the
05:49
issue that everyone as a human being
05:52
really has the right to this to access
05:55
the care necessary to survive to live so
06:00
health is partly about access to care
06:03
but it’s also partly about what we call
06:06
social determinants so education for
06:09
example non-discrimination in the
06:12
workforce clean air traffic laws access
06:17
to water and sanitation I mean Flint
06:19
Michigan
06:20
is a huge example of that so it’s about
06:24
those broader things and that’s what i
06:26
would call applying a human rights
06:28
framework to help seeing that some of
06:31
the connections between those broader
06:32
things and then there’s a right to
06:35
health which may include some public
06:38
health preconditions but also health
06:40
care and yes it treating it as a right
06:44
requires some basic equalizing of the
06:48
playing field it doesn’t mean a right to
06:50
be healthy it doesn’t mean that
06:52
everybody is going to have the same
06:53
outcome it doesn’t mean that if you’re
06:58
very rich and you want to pay for some
07:00
extraordinarily expensive treatment that
07:03
should be denied to you but it does mean
07:06
that by virtue of being humans and being
07:11
members of a society or community or
07:14
polity we should all have some equal
07:17
claim to concern and respect so when you
07:20
mention that it’s much more vast than
07:23
simply everyone having the ability to go
07:25
to a hospital it strikes me then that
07:28
this is a larger societal shift then
07:33
simply implementing health care law’s
07:37
right it requires a lot more commitment
07:39
and by everybody say pollution right and
07:43
there’s a lot of people who are
07:45
reluctant to do this for economic
07:47
reasons so is it the case that by
07:51
situating this within the realm of human
07:53
rights it’s a way to more effectively
07:57
communicate how important all these
07:59
issues are and how intertwined
08:00
everything is I think it is I mean I
08:04
think that people in public health
08:06
already recognize the importance of
08:09
social determinants what human rights
08:11
particularly adds is this understanding
08:15
of accountability of mechanisms and
08:18
frameworks of accountability so that
08:21
people are active agents in making
08:25
decisions about their lives and health
08:26
and they should be they’re entitled to
08:29
make claims on the state and other
08:33
private institutions and actors and yet
08:36
a lot of it is goes way beyond the
08:38
health sector to sort of a social
08:40
contract we have which in many countries
08:43
in Western Europe and in Canada or have
08:47
a far more developed social contract
08:50
than we do in this country where we
08:53
still are stuck in a kind of 19th
08:55
century notion of the liberal state
08:57
where everybody is assumed to be equal
09:00
if the state will just leave them alone
09:02
and we know that’s not true right well
09:05
so i went to a talk in the fall when one
09:08
of my favorite things about being here
09:09
is just if you were so inclined you
09:11
could go to a talk all day every day and
09:13
just it’s really remarkable the the
09:15
scope of what’s going on but I went to
09:18
this one because the basic premise was
09:20
the the faculty member believers from
09:23
the Kennedy School had written a book
09:25
asking why are Americans overweight and
09:28
why do they pollute as much as they
09:31
pollute and one of the things that he
09:34
argued in the talking and in his book
09:36
was that the United States is much more
09:38
reactive to issues they they wait until
09:42
something happens and then they want to
09:44
prescribe something to fix it they don’t
09:47
want to be proactive so the issue of you
09:50
know preventative health or something
09:52
like reducing pollution and having that
09:55
be a part of health doesn’t really
09:58
generate interest in the United States
10:00
because it’s preventative where the
10:04
country wants to be reactive unless they
10:06
see a problem they don’t feel that they
10:08
need to address it was his contention
10:10
and it struck me is as an outsider that
10:14
seems like a legitimate claim and you
10:17
just made the the point that in Canada
10:19
and a lot of Western Europe the
10:21
situation is so different than here is
10:24
that one possible reason is that in this
10:27
country there’s this culture of being
10:29
reactive to issues
10:31
and a proactive stance doesn’t get the
10:33
same traction I think there may be an
10:35
element of that but i think there’s also
10:38
an institutional design element so in
10:42
this country where we have health
10:46
insurance that’s tied to employment
10:48
you’re employed with an employer for you
10:51
know maybe five to ten years on average
10:54
there is absolutely no incentive for
10:58
that health plan to do anything
11:01
preventive so people get to retirement
11:04
age and they get to when they they’re on
11:07
Medicare and then all of the chronic
11:09
health problems start catching up to
11:11
them the diet the exercise the smoking
11:15
the sedentary lifestyles hit when when
11:20
the taxpayer is paying out of medicare
11:22
whereas if you have a system like
11:24
Canada’s which is sort of cradle to
11:26
grave thought systematically and planned
11:31
there’s a very different attitude toward
11:33
preventive health yeah because you
11:35
remember when Michael Bloomberg tried to
11:36
ban the giant sodas and everyone made
11:38
fun of them and or Michelle Obama tries
11:40
to talk about urban gardens and eating
11:43
fruits and vegetables and everyone
11:44
talked about the nanny state like don’t
11:46
tell me what to do but it is a
11:48
collective issue and I think that’s the
11:50
issue that i have with i mean i’ve been
11:53
here for 16 months and I mean not that
11:55
cuz this amazing utopia but there seems
11:58
to be no collectively I’ll think so the
12:02
like it doesn’t seem as though there’s a
12:04
collective mindset in the same way and
12:06
even little stupid things like walking
12:09
down the street people are less inclined
12:11
to you know sort of shift over and make
12:14
room for everybody it’s little things
12:16
and that individualistic mentality seems
12:19
so ingrained that that’s why those sorts
12:23
of things wouldn’t really have a lot of
12:24
well it’s ingrained but as with when
12:28
whenever we’re looking at other cultures
12:30
and saying oh well I get this a lot in
12:34
my work oh well they don’t believe
12:36
and women’s rights or women’s equality
12:38
and you know so that’s somehow Western
12:41
imposition of values so us individualism
12:45
and and cultural exceptionalism has some
12:50
name the stereotype is based on
12:52
something but it is also continually fed
12:56
what is happening now in our political
12:58
process is you know it the idea that
13:02
government can’t do anything for you and
13:04
the everybody needs it’s better off if
13:07
they’re pulling themselves up by their
13:09
bootstraps is a continually fed diet for
13:12
people in this country and then you know
13:15
eventually sinks in and then we’re we’re
13:17
reaping what has been so on for decades
13:20
mom it’s the way we educate kids and and
13:26
repeat some of those messages yeah and
13:29
it’s everywhere to its I mean I’m
13:30
teaching the pop culture course this
13:32
semester and that that narrative is in
13:35
films like Hollywood films repeatedly
13:37
this individualistic look out for
13:39
yourself you’re the hero of your own
13:41
story sort of thing and that’s the
13:44
message and I mean I would say we don’t
13:46
have the same messages in Canadian films
13:48
which i think is true but we also don’t
13:50
even have Canadian film so it’s out to
13:53
to really make that case but then as it
13:56
relates to to human rights I mean one of
13:59
the things that we talk about now is
14:01
things like the Zika virus or Ebola
14:04
which was a big big issue and it seemed
14:07
as though there was this Western concern
14:11
not so much for the folks in Brazil or
14:15
in Africa who were actually dealing with
14:17
this but the concern was we have to not
14:20
let it get back here and that strikes me
14:22
as if we’re talking about health is a
14:24
human right that those people in Africa
14:27
or in Brazil have just as much right to
14:31
care if they have the disease or to
14:35
preventative measures to try and prevent
14:38
the spread of the disease as people in
14:40
the West and yet the discussion doesn’t
14:43
get framed that way and and I’m so I’m
14:46
wondering for you as someone who writes
14:48
about public
14:49
studies public health is that
14:51
frustrating to you or is it part of a
14:56
colonial mindset or is or am I reading
15:00
something wrong well I think for example
15:04
with Zika I think you’re absolutely
15:06
right that the concern is largely about
15:08
health security with Ebola you could
15:12
test for fever and stop people at the
15:13
border with mosquitoes it’s a little
15:15
harder know and of course it’s going to
15:16
ruin a lot of spring big vacations and
15:19
the Olympics for people right but but if
15:22
you take Zika the public health I mean
15:25
Zika outbreak is a reflection of chronic
15:29
political failures in both health
15:32
systems and beyond in those social
15:34
determinants in segregated housing where
15:36
there’s not water and some piped water
15:38
and sanitation and people collect water
15:40
and open containers and the confluence
15:43
of discrimination based on gender and
15:46
poverty and sometimes race and ethnicity
15:49
and the response translates those
15:53
political failures for which governments
15:56
should be accountable in a human rights
15:58
framework into personal failures so
16:02
these poor women should be spraying
16:06
their houses and not getting pregnant
16:09
many of these women don’t have control
16:11
over their sexual lives they don’t have
16:15
access to sustain secure access to
16:18
contraception they don’t have sexuality
16:20
education and they certainly in many of
16:23
these countries don’t have access to
16:24
abortion in the event they were to get
16:26
pregnant and be diagnosed with Zika and
16:28
it is really to me very cynical it’s a
16:32
cynical abdication of governmental
16:35
responsibility so that’s sort of what a
16:38
human rights framework does it
16:39
highlights it visible eyeses those
16:43
spaces for accountability and how to
16:46
reframe the dialogue and the claims
16:49
whether the right to health is different
16:52
here than it is in nicaragua or West
16:56
Africa
16:57
you know I think even the civil rights
17:00
that right to fair and free elections is
17:03
going to be different in Liberia than it
17:05
is in Canada for example so is the right
17:08
to health basin to say that there’s some
17:11
rules of the game in terms of
17:13
intellectual property and other kinds of
17:16
trade issues and and and fiscal rules
17:21
that really ring sort of the global
17:24
economic order against four countries
17:27
now you you mentioned that you know the
17:30
role of the government and all this now
17:32
I’m wondering by saying that it’s a
17:35
fundamental responsibility of the
17:36
government does that not alter to a
17:39
certain degree a conception of what
17:41
governments are for particularly in a
17:43
small our Republican country where the
17:47
mindset is that the government is there
17:49
to essentially do little as as possible
17:51
it’s there for national defense and to
17:53
organize commerce as necessary and by
17:57
saying that this their involvement in a
18:00
health issue or to promote health both
18:04
in terms of preventative health and the
18:07
social issues that go along with that as
18:08
well as health care does that not
18:10
redefine the role of government in a lot
18:12
of places in the world yes I think it
18:15
potentially does I mean it certainly it
18:17
certainly requires a vision of
18:19
government that is a social democratic
18:23
state or a social state of laws it’s
18:26
called in some countries in Latin
18:28
America we’re bringing up the people who
18:33
are most impoverished or marginalized
18:37
for different reasons is part of the
18:39
government’s role to let them live lives
18:42
of dignity but I actually think there’s
18:45
I mean in this country for example
18:47
there’s a lot of hypocrisy around that
18:49
we have Republicans who are running on
18:53
we need a much smaller government well
18:55
you know let’s privatise religion
18:57
instead of privatizing health care and
19:00
education and and and I love there is I
19:04
think it was I doubt you don’t want to
19:06
say the name because I can’t
19:07
but there was a Republican senator who
19:09
when they did the government shutdown a
19:11
few years ago he went out to where I
19:14
believe was the second world war
19:15
monument there were a bunch of Second
19:16
World War veterans who had flown up on
19:18
one of those hero flights or whatever
19:20
they’re called from Florida and there
19:22
are a bunch of Park Rangers who said out
19:24
the monuments closed because the
19:26
government shutdown and this Republican
19:27
senator who voted for the shutdown went
19:30
out and started yelling at these Rangers
19:32
that these Park Rangers I thought to
19:34
myself that is insane what you’re doing
19:37
you voted to shut this thing down like
19:39
don’t now grandstand and it seems as
19:42
though it’s the same issue that they
19:44
want and it’s not just Republicans in
19:47
this country there’s there’s groups all
19:48
over the world can um but there’s no
19:50
easy to turn they really are and but
19:54
they because who feels that the
19:55
government should have as little role in
19:58
citizens day-to-day life as humanly
20:00
possible except in religion right or
20:03
when something they don’t right hands it
20:04
right like it’s so it’s this really
20:07
weird dynamic and I’m wondering do you
20:09
have any sense as to why health is such
20:13
a flashpoint for this you know you
20:16
mentioned religion is another one but
20:18
health also seems to be a major issue a
20:20
contentious issue in a lot of places
20:22
around the world and given that I think
20:26
most people would agree that you know if
20:28
you get cancer you probably should be
20:31
able to get care for that yet we still
20:34
have this mine there’s still this debate
20:37
over health well I think um they’re
20:40
still at multiple levels and it’s not
20:42
just in this country you’re right an
20:44
idea health talking about health and
20:47
rights terms questions what is natural
20:49
and what is not the kind of the
20:51
boundaries between what is caused by the
20:55
way society is arranged and what is
20:57
caused by divine will you know act of
21:00
God and I think we still very much have
21:03
this attitude about health as
21:06
and in and disease as punishment for sin
21:11
for transgression you hear it constantly
21:14
in my work on maternal mortality in the
21:17
global south oh it was God’s will that
21:19
this woman died because you know that
21:22
she bled out or had an excruciating
21:25
death and protracted labor because she
21:28
you know had committed infidelity or she
21:31
had done this or so there’s a lot of
21:33
that and and that’s in this country to
21:36
and very much it’s a little bit
21:38
different because the messages are about
21:40
what you need to you know be eating no
21:44
trans fats and you need to be doing this
21:46
to exercise and you need to be keeping
21:48
your you know and all of those things
21:50
and if you’re not doing those and doing
21:52
everything that the media messages say
21:54
well you know if you get sick then it’s
21:57
sort of your own fault right right I
22:00
remember there was a golf event they let
22:03
these amateurs play the US Open course
22:05
like the monday before the US Open to
22:08
see if any of them could break a hundred
22:09
and I think there’s three celebrities in
22:12
one other person this other person had
22:14
lung cancer and they turned this into
22:17
like an hour-long TV show and the guy
22:19
was you know like a 20 handicap and they
22:21
picked him and repeatedly on the show
22:23
they said lung cancer but he never like
22:26
he never smoked like they reminded the
22:28
viewers that wasn’t the self-inflicted
22:31
right one campaign he’s not undeserving
22:34
right we should totally put some value
22:35
on the type of cancer that he had yes
22:38
which really I thought was so strange if
22:41
the person had lung cancer from smoking
22:44
are they less worthy of our sympathy
22:48
like this strikes me is one of these
22:51
issues that you probably confront a lot
22:52
that as you’re talking about the
22:54
valuation of health which which seems so
22:58
backwards when we think about if we’re
23:01
trying to frame how does a human right
23:02
exactly I mean if you have a view of
23:06
health and healthcare simply as
23:09
something that should be set by the
23:12
price mechanism then you want to create
23:13
incentives and at the margins people you
23:17
know neyo
23:18
the British economist like Richard
23:20
Epstein have argued that at the margins
23:23
you might be affecting behavior with a
23:26
right to health care so you know people
23:29
who might not eat so many big whoppers
23:34
or french fries might do so and then
23:37
they might get diabetes if they know
23:39
they’re always going to be getting free
23:40
to Alan sister it’s so that is that’s
23:44
you can’t think in that way I mean
23:46
rights don’t need to be earned so if you
23:49
have a right to healthcare it goes along
23:51
with education about nutrition and
23:54
access to fruits and vegetables and
23:57
places to exercise and move around in
24:01
but it can’t be something that people
24:05
need to deserve right right and you know
24:09
at the same time it goes like I’ll go
24:10
back to this talk in the fall professor
24:13
he said he’d gone to to Congress and
24:15
testified in front of Congress as two
24:17
different ways to improve health and one
24:20
of the things he said was that for food
24:22
stamps this should make a program where
24:24
you can only buy certain types of foods
24:26
with food stamps approved as healthy
24:29
choices and he said when he got back
24:32
from testifying there was a bunch of
24:35
email calls letters from low-income
24:38
individuals particularly minority
24:41
low-income individuals saying like don’t
24:45
you can’t tell us what to do this is a
24:48
white man telling Congress how Hispanic
24:53
african-american low-income communities
24:55
should live and that’s I was interpreted
24:56
in those communities and they said that
24:58
that’s not a right for you to do that
25:00
and it was almost situated that for them
25:03
the right that they were really
25:05
concerned about was that right of choice
25:07
and that freedom of choice which you
25:11
know goes maybe against the health stuff
25:13
because when they if they choose to eat
25:16
all this stuff and do get diabetes they
25:19
might not have the access to the health
25:21
so it’s almost two rights in conflict I
25:25
am I not really because you know I
25:29
agree with thumb I mean we wouldn’t as
25:31
you’ve pointed out we wouldn’t dare tell
25:33
rich people oh you can’t spend your
25:35
money on Johnny Walker brew or whatever
25:38
this and that it’s it’s it those we have
25:43
terrible food and drug policy in this
25:45
country terrible regulation of food it
25:50
people live in segregated neighborhoods
25:52
where they don’t have access to parks I
25:54
mean I don’t know that if you’ve gone
25:56
around some of the neighborhoods in
25:57
Boston but you know they’re not a lot of
25:59
green spaces and Roxbury or Washington
26:03
Heights in manhattan or i mean there’s
26:06
not a lot of places to go out and get
26:08
exercise or outlets for that and so all
26:12
of these upstream factors are oh we have
26:16
to take those for granted and the only
26:17
way to get them to improve is to impose
26:20
even more restrictions on their choice
26:22
down at the you know at the point of
26:25
giving them food stamps or conditional
26:27
cash transfers basic right right but
26:30
that’s not a case in which we could see
26:32
government involvement as promoting this
26:35
human right no i would say go if
26:39
government involvement wants to promote
26:40
the human right then they should do
26:42
something about nutrition education you
26:46
know etc you know right or say not cut
26:49
fizzy right for instance yeah which is
26:53
remarkable I mean I live I grew up in
26:56
can I went to school in Canada I had the
26:58
option to stop taking if his edit after
27:00
ninth grade and I took that option which
27:03
was weird because then all day every day
27:05
you’re just sitting around which is so
27:07
strange and so almost counter to what
27:11
education should be it should be
27:13
well-rounded and it goes along we had a
27:15
major debate in Ontario over the past
27:17
year over sex education the government
27:20
wanted to implement a new section
27:22
education curriculum which they did I
27:25
believe that started younger than the
27:28
old one and the government’s argument
27:30
was this is valuable information it will
27:33
help kids growing up to
27:34
it wasn’t Oh from what i read wasn’t
27:37
overly sexualized it was you know
27:39
telling first graders the proper names
27:41
like anatomical names of body parts sort
27:44
of thing and letting them know you know
27:46
how to tell or what to do if someone
27:49
touches them inappropriately these sorts
27:51
of things and the response from a lot of
27:54
a lot of people in the public was this
27:56
isn’t the government role this is the
27:59
parent role I don’t want my kids
28:00
learning this from a teacher I want them
28:02
learning it from me which in a sense is
28:05
reasonable I can understand why parents
28:09
would feel that way but at the same time
28:10
we know that a lot of parents aren’t
28:13
having those discussions and and that is
28:16
another public health issue that forget
28:19
about you know sexually transmitted
28:21
diseases teenage pregnancy those sorts
28:23
of things if something happens to a kid
28:25
they have to be given the proper form or
28:28
the understanding to know how to express
28:32
that and tell people what’s going on and
28:34
this notion of individual rights of the
28:38
parent in that case to me it’s trumped
28:41
by the collective good and what’s best
28:43
for the child but so I don’t know if we
28:46
would my reading of that fit in with the
28:48
human rights really I mean human rights
28:52
used to be and still to some extent by
28:55
some people be really limited to rights
29:00
that happen in the public sphere so you
29:03
know a police officer that commits an
29:05
abuse or something but increasingly with
29:09
we’ve come to recognize that you know at
29:11
least for women and children what
29:13
happens behind closed doors in private
29:15
settings in their homes really really
29:18
matters and so the state has an
29:22
obligation to protect more vulnerable
29:25
members of society from abuses by other
29:28
members of society whether that’s saying
29:31
you know a private company can’t pollute
29:34
your water source or whether that’s a
29:36
a teacher or father or uncle or other
29:41
person can’t abuse a child now I guess
29:46
the the one issue that could come up or
29:49
the way we sort of touch down a little
29:50
bit I we have the book right here and
29:52
there’s a on the cover there’s a photo
29:55
of a smiling child where is this pit
29:58
photo taken lesotho Tanzania okay so and
30:03
the kid is clearly very happy well so
30:06
the story behind the photo is that we
30:09
were actually there I was there with my
30:11
family and I have two teenage kids and
30:15
they were sharing some candy with a
30:18
bunch of tests and kids so all of them
30:21
were smiling without exception now the
30:25
issue though you know just that the
30:28
racial composition of the photo leads
30:31
one to wonder about issues of
30:33
colonialism and the notion of your white
30:37
Western countries going into non-white
30:42
non-western countries and placing values
30:46
a western value system on them and the
30:49
colonial ID and the colonial mentality
30:50
that goes along with that is that a
30:53
danger of people in the West promoting
30:56
this version or this vision of a human
30:59
rights framework or is it universal
31:01
enough that that isn’t really a concern
31:05
so I talked about this a lot in the book
31:08
I think that the concept of human
31:12
dignity the concept that I need to treat
31:16
myself with dignity because I have life
31:19
plans and I am NOT just a means to an
31:23
end but an end also means that I treat
31:27
you with dignity that you’re not just an
31:30
instrument to achieve my ends I think
31:33
that concept is universal and you see it
31:37
across religions you see it and I talked
31:40
about this quite a lot in the book
31:41
across African cultures
31:45
Buddhism Hinduism some kinds of some
31:50
variants of Judaism I think the way in
31:55
which that plays out is quite culturally
31:59
and contextually contingent and I also
32:02
discussed that I think we create our
32:04
identities through our relationships and
32:06
it’s very embedded but I don’t think
32:09
that that means it’s it’s the way human
32:12
rights has often been interpreted or
32:15
applied in an extremely Western as over
32:21
sort of autonomous beings coming out of
32:24
a very Western philosophical tradition
32:27
that can seem and rigidly so and not
32:32
understanding the the context in which
32:34
we’re operating that it can seem a
32:36
Western imposition if it’s more about
32:40
negotiating social practices and power
32:43
relationships and allowing people within
32:46
their relationships within their
32:48
communities to exercise some dignity I
32:52
think it’s not an imposition and I have
32:56
worked in many cultures in Latin America
33:01
South Asia across Africa where there are
33:05
different versions of this that have
33:08
been expressed to me and I’ve seen how
33:10
it’s come up so it’s really almost an
33:13
issue where the people in a place from a
33:16
place to are coming at this from a place
33:17
of privilege really need to listen right
33:21
and understand where everyone is coming
33:25
from because generally speaking it’s
33:27
going to be the privileged people going
33:29
to the to these communities that may not
33:32
have access to certain things and so
33:34
it’s really try to understand their
33:36
reality and how that’s often that’s
33:39
that’s often the case but I think when
33:42
we in the West say their culture doesn’t
33:45
accept this or that well the people of
33:49
privilege and often men who are defining
33:52
what the culture is and cultures are
33:55
just not monolithic
33:57
they’re not static so when you’ve gone
34:00
and you say this photo in Tanzania when
34:02
you’ve gone around the world have you
34:04
run into any resistance from people who
34:09
you’ve met who view this as an
34:12
imposition it says that been a challenge
34:15
at any point of course I mean there are
34:17
lots of times where people have have
34:21
said oh those are Western values or o
34:27
our women don’t believe in that or and
34:32
again I think that they speak for a
34:34
certain sector of the population and
34:37
there’s also the way you respond and I
34:42
in MO in much of this book and in much
34:45
of my work I’ve actually lived places so
34:48
i was living in tanzania for three and a
34:50
half years I’ve lived in Latin America I
34:53
am half South American so I think that
34:56
also helps with not just coming in you
35:00
know and landing from another planet
35:02
from Harvard but actually working with
35:05
groups who are already working on these
35:07
issues on their terms so it’s really a
35:11
matter of support in the people who are
35:13
who are there and who are working the
35:16
same the same way that you know I mean I
35:17
come into the candid like this is a
35:19
terrible parallel but I come into the
35:21
Canada program at Harvard I’m not there
35:23
to redefine what it is I’m there to help
35:27
what’s already happening and don’t sort
35:29
of situate myself right in what’s
35:30
happening right there right I’m not some
35:32
sort of mercenary Senta that’s exactly
35:37
right yeah and I see myself doing the
35:39
same thing I’ve done a lot of work in
35:41
South Texas you know it’s in the same
35:44
country but it’s a very very different
35:46
reality in world mm-hmm and and really
35:49
you mentioned is that the term dignity
35:51
would mean different things to different
35:52
people to write when you’re talking
35:54
about the struggle for dignity I mean I
35:56
do things that I’m sure there are people
35:58
you know in Madison
35:59
avenue new york who would think are
36:00
dignified right then sort of thing i
36:03
mean that’s a sort of a bad example but
36:06
you know the term dignity would mean
36:09
different things to different people and
36:11
understanding that and how yeah I I
36:15
think um the I set out the idea that
36:19
this core level dignity means
36:23
acknowledging that we are subjects of
36:26
our own lives and we have certain agency
36:29
and can make choices and I give an
36:33
example at the beginning of the book
36:35
about how torture is sort of the
36:37
quintessential violation of human rights
36:38
because it extinguishes that possibility
36:41
is the ultimate example of treating
36:43
another human being as a means to an
36:46
ends to extract information or punish
36:49
but there are lots of other ways we deny
36:51
people dignity whether we’re paying them
36:53
wages that are not livable whether we
36:56
are using or sexually exploiting
36:59
children and not even letting them grow
37:01
up to think of themselves as full
37:04
subjects so the book explores some of
37:07
that too hmm so it’s almost it sounds to
37:10
me like it comes down in certain case to
37:12
agency and recognizing everyone’s agency
37:15
it absolutely does so the book is
37:17
structured that you do talk about these
37:20
broad issues but there are also some
37:22
case studies included in the book and
37:25
you mentioned you lived in various
37:27
places around the world are so or these
37:28
case studies based on your lived
37:30
experiences yes they all are so it’s a
37:34
very personal book I mean the the very
37:36
first sentence of the introduction is
37:38
before I had my two kids I had a
37:40
miscarriage okay and I talked about that
37:43
which wasn’t a big medical deal in New
37:46
York where I was living at the time but
37:48
then I the following week I end up going
37:51
to chop us in southern Mexico and in a
37:54
camp for internally displaced persons I
37:57
meet a woman who is miscarrying
38:00
hemorrhaging at just
38:02
same stage of pregnancy as I was and
38:06
from that event and making sure she gets
38:10
medical attention and I talked about you
38:15
know how we think about our own
38:16
suffering and the suffering of others
38:18
and so it’s weaving together constantly
38:22
my own story the stories that I’ve heard
38:24
over 20-some odd years of doing this
38:27
work and then trying to connect them to
38:30
theories right now you met you mentioned
38:33
that the case in Mexico there that
38:34
sounds like pretty powerful experience
38:37
in a powerful example but are there any
38:38
others that really stand out to you is
38:40
being particularly I hope all of them oh
38:42
yeah I knew what I try to give examples
38:47
both that are I mean some of them are
38:50
tragic I’ve worked a lot on maternal
38:52
mortality so there are many stories of
38:54
women dying and some stories of children
38:56
dying but there are also stories of you
39:02
know an indigenous woman in Peru
39:05
appropriating enough of a sense of
39:07
herself and her agency to stand up and
39:10
talk back to a European descended doctor
39:15
and you know what that kind of
39:18
appropriation of rights means beyond
39:20
even just improving access to healthcare
39:23
in that particular setting or about what
39:26
a former student was able to do during
39:28
the Ebola crisis in Liberia you know so
39:32
I try to also give examples of how using
39:35
these frameworks in different places has
39:38
really meant something to people so by
39:40
personalizing it then it’s a way for you
39:43
to maybe show how these these broader
39:48
ideas aren’t purely theoretical because
39:50
that’s one of the issues that I think
39:51
academics run into a lot is that they
39:55
present all these theoretical things but
39:58
there is no practical explanation of how
40:00
it actually works but so one of the
40:02
goals with this book by personalizing
40:03
then would be the show firstly
40:06
absolutely
40:07
is if I’m someone who buys the book
40:09
reads the book are these the sorts of
40:12
things than that I could implement in my
40:14
own life and my own way of thinking and
40:17
tribes Aleut Lee write that sickle yeah
40:19
and because one of the issues say in
40:22
Canada you know we have a lot of
40:23
reserves that don’t have access to water
40:26
say and there are a lot of First Nations
40:28
communities and northern communities
40:31
where suicide is a huge issue and so
40:34
these are the sorts of ideas that can
40:37
help us think about these in a new way
40:41
perhaps yeah and think about designing
40:44
programs that and really involve
40:47
meaningful participation by First
40:49
Nations think about different kinds of
40:52
advocacy or legal strategies I mean
40:55
they’re different sorts of examples
40:57
budget work grassroots social
41:00
mobilization litigation policymaking so
41:04
I hope it does give a sense of oh this
41:07
worked in this place and we could take
41:09
this right and really it’s it’s almost
41:12
to me to also you’ve mentioned this
41:15
getting away from the commodification of
41:16
people and these ideas right like it’s
41:20
okay it’s michael moore but i mean he
41:22
talks in one of his movies about how
41:25
there’s companies that have life
41:28
insurance on their employees and some of
41:31
them are upset that their employees
41:32
don’t die regularly enough like that is
41:35
so awful and it’s the commodification of
41:38
people and lives if we can get away from
41:41
the commodification of it that’s a huge
41:43
step in the process that would or mean
41:47
tectonic shifts and okay follow this is
41:50
made right now is that possible uh I
41:54
think it’s possible not all at once I
41:58
mean this isn’t a magic bullet it’s not
42:00
a manual it’s not a magic bullet but i
42:04
think it’s it’s possible to fight back
42:07
against that trend
42:09
and it’s really important given the
42:11
political climate in this country at the
42:13
moment and depending on what happens in
42:16
the fall it’s interesting we’re
42:19
recording this on Friday and we’re
42:21
posting it wednesday so five days from
42:23
now in the interim though there are
42:25
major primaries in i believe the
42:30
Democrats also vote these dates but
42:31
Florida and Ohio which are going to be
42:34
major determinants in the process for
42:37
who is nominated for the presidency and
42:39
depending on who that is there could be
42:41
some major issues at play there will
42:44
definitely be major display yes my class
42:47
loves to talk about this each week and a
42:50
lot of it does come down to health and
42:53
this notion of health because depending
42:55
on who wins a lot of change social
42:58
changes legal changes will impact health
43:01
and these ideas so it’s an important
43:05
book and we would encourage everybody to
43:07
go find it it is power suffering and the
43:11
struggle for dignity Human Rights
43:13
frameworks for health and why they
43:14
matter university of pennsylvania press
43:17
there’s also a foreword by Paul Farmer
43:19
that is included in the book and it’s
43:22
just out it’s a 2016 releases I believe
43:24
it’s the first episode we’re doing with
43:25
the 2016 release book so it’s planning
43:28
so very excited so elysia Heyman thank
43:32
you so much for doing this thank you my
43:34
pleasure if you have any questions are
43:36
how much with the podcast its history
43:37
slam at gmail com twitter is at dr.
43:39
Johnny fever and if you’re out and you
43:41
see enrico palazzo please say hi for me
43:49
thanks for listening to the history slam
43:51
podcast be sure to check out active
43:53
history for more features articles and
43:54
be sure to subscribe on itunes
—
Previously published on Activehistory.ca and is republished here under a Creative Commons license.
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