? ?
It was easiest when I was in college.
I could truthfully say, "Yes, I have a younger sister,"
and completely sidestep any qualifications.
Because even if they asked me how old she was
people would just assume
she was still in school back home.
But the truth is my sister never went to school
private or otherwise.
She also never crawled, walked, laughed, spoke
or really did anything
except eat, sleep, cry
and have seizures.
>> Hi, I'm Charles Monroe-Kane.
And this is Director's Cut,
a program dedicated
to independent Wisconsin films
and filmmakers.
The clip you just saw
was from the short film,
"I Have A Sister."
It was directed by our guest
today, Amrys Williams.
Amrys, thank you very much
for being here and sharing
a very personal film with us.
How old were you
when Vali was born?
>> I was two years old.
>> Do you remember anything
about the day she came home
from the hospital, any of that
kind of initial stuff, or
were you too young for that?
>> I was pretty much too young
to really have firm memories
about all of that stuff
going on.
My memories of that time are
mostly from family photo albums
and photographs.
>> It's interesting
that you bring that up now.
I mean, the film,
as we saw in the opening clip,
and we'll see more,
is not home movies.
But it's home photographs.
And they're very, very powerful.
I was thinking a lot
about childhood memories,
and I don't remember
the Grand Canyon visit that
I went on, but I do remember
the photographs.
It seems like you've re-created
that, as well, with this film.
Is that what
you were trying to do?
>> Well, it's one of the things
I was trying to achieve
with the photographs.
That was one of the reasons
that I wanted to have these
still photographs as a part of
something that sort of
bookended the film, just because
so much of my memories
of that period of my life are,
because I was so young,
you know, the stories that
my family tells around them.
And my memories of that time
are very much related to those
photographs, and sort of
the ritual of going through
with my parents, and looking
at those photographs and
telling stories about that time.
>> Very intimate
for the viewer, as well.
We are watching, you know,
sitting around a Christmas
with my grandmother and going
through the old photographs.
That's a very intimate thing.
I think you achieved intimacy
with doing that.
Do you remember,
or not "remember," but tell me
about the day that Vali
got her shots.
I'm sure that's part
of the story of your film.
What happened that day?
>> Well, like I said,
it's not something I personally
remember myself.
But there is one photograph
which appears in the film,
which is one of those sort of
storied photographs that
we tell these stories around.
It was in, I think it
would have to have been
in November of 1982.
As Vali went in
for her first DPT shots.
>> So she was two months old?
>> No, maybe it was February.
She was two months old.
I don't remember exactly the
dates when all this happened.
But she was two months old,
and she went in for the normal
regimen of vaccinations that
one gets when one is an infant.
And she slept for three days
after receiving the shot,
ran a fever.
My parents were very concerned.
But the pediatrician said
that, you know, there wasn't
really anything to be
particularly concerned about.
And when she went in for her
second inoculation,
despite my parents' concerns,
they said there was nothing
to worry about
and administered the shot.
And it was really after that
moment that, at that point,
that my parents really started
to observe changes
in her behavior.
She was really inconsolable,
screaming all of the time.
>> A parents' nightmare
when you go to get the shots.
I want to show another clip
from the film.
This clip we want to show,
I want you to set it up for us,
for the viewer.
>> Well, this clip comes from,
when I was shooting the movie,
my parents were visiting me
for Thanksgiving.
So the clip you're about to see
is just sort of a discussion
we were having.
A lot of this film was really
sort of a collaborative project
between me and my parents.
Because I relied on them so much
for providing,
not only the photographs, but
also a lot of the information
from that time period.
I was so young,
I don't remember a lot of it.
And so, this is just sort of
a clip of the discussion
that sort of came up
as we were all talking
around the table, having drinks.
>> Let's roll the clip.
The doctors who apply the science
that they've been taught are innocent of
what do I want to say, culpable sin.
They're just not responsible.
They're doing what they think is right.
No, they are doing what they believe is--
They are doing what drug companies have told them to do
and what CDC has told them to do.
And I believe that physicians
need to stop listening to what drug companies are saying.
However you describe it.
However you may describe it
I don't think that they think
that they are sinning against the child.
>> Wow, you know,
when I watch that clip,
I hear your mother's anger.
And it's like, the emotions
that your family must have
gone through dealing with this.
They take their daughter
to get shots
and there's brain damage.
Permanent brain damage,
correct?
And the anger, and guilt
and all the feelings.
What do you remember
in your household, being
the emotional kind of feeling
that you ran through with that?
>> Well, the funny thing
about all of this is that
my memory of that time is,
you know, isn't fraught.
I don't remember the home
being an unhappy place,
or anything like that.
Of course, when my parents
talk about that time, you know,
it's all about how they
never got any sleep, and
it was sort of trying to split
the duties of childcare and
taking care of a two-year-old
along with an infant
who was inconsolable.
And really trying to balance
all of that.
I mean, it was incredibly
difficult for them.
You know, you never sleep
when you have an infant
to begin with, having an infant
who's having seizures
all the time is, you know,
much harder to handle.
But you know, my memories
are just as rosy
as the rest of my childhood.
So it's sort of a strae thing
for me, because I don't think of
it as a particularly difficult
period.
I think, because as
a two-year-old, I was somewhat
oblivious to all the things
that were sort of going on.
I didn't really know
that what was happening
wasn't what normally happens
in families.
>> What was going on?
What were your parents
experiencing with Vali?
What was their regimen
with her like in the day?
>> Well, you know, my dad
was working, and my mom was home
with me and with Vali
at that time.
And fortunately, my dad
always talks about how
he had a very understanding boss
and was able to leave work
whenever he needed to,
to come home and sort of relieve
my mother, who, you know,
because we didn't have
outside care.
You know, my mother
was home with us.
And because Vali would scream
at night, it was very difficult
to get her to sleep, obviously.
So my parents
were sort of switching off.
It was kind of like working
a night shift at home
and working the day shift
during the day at work.
I think a lot of what was going
on is, you know, for my parents,
they didn't really have
a whole lot of time to spend
with one another.
You know, it was very stressful
in the family, certainly,
how things were.
That's something that they
always bring up, is you know,
it was very difficult to try
and hold the family together
in the midst of all of this
that was sort of thrown at us
unexpectedly.
>> And of course, a decision
was made at some point,
which I think our next clip
shows very well.
It doesn't need a set up,
so let's roll the next clip.
Everything was okay until the day
your mother was upstairs sleeping.
Vali was in on the couch resting.
And I was making dinner for both you and her, and myself.
And I had my back turned to you, and you asked me something.
I answered it, and you started shrieking.
And what you said was, "Stop shouting at me!"
And then you got down in a crouch.
And all I can think of
is you looked like the Wicked Witch of the West
in a crouch, you know, as she's talking to Dorothy
in the most miserable fashion.
And you said, "You're always shouting at me!"
And I went right down on my knees
to the floor in front of you.
And I held you.
And I said, "Honey, I didn't know.
I thought I just answered you."
"You shouted at me! You're always shouting!"
That was the incident that told me
that I had to speak to your mother about St. Margaret's.
>> That was a clip from
Amrys Williams' film,
"I Have A Sister."
God, yeah.
I'm a father and I watch
that clip of your father,
and it just chokes me up.
That's a very intense
experience of choosing
what he had to choose.
Do you remember the day
Vali was put in a home?
How old were you?
>> I was four, I believe.
I do actually remember the day
that my parents told me
that Vali was going to be living
out of the house, in a facility
where she could have
24-hour care, which is something
that we just really couldn't
provide at home.
And I remember being in the
kitchen, standing by the stove,
and my parents being in the
kitchen, and sort of telling me
what was going to happen.
I know in conversations I've had
with them in subsequent years,
that you know, this was
something that they were
so nervous about.
And how to tell their other
daughter that her sister
wasn't going to be living
at home anymore.
And you know, would I think
that this was something
that could happen to me.
Would they send me away?
There were all sorts
of anxieties, I think, for them,
in how to, once they had
made this decision.
I think they really thought
this was what we could do
to keep the family whole.
You know, how to communicate
that to a four-year-old.
Do they really have full grasp
of all of the intricacies
of what was going on?
So I do remember the day
that happened.
You know, talking in the kitchen
and on the back porch
about what was going to happen.
You know, yes, we would be able
to visit Vali all the time.
We could see her.
We could bring her home
when we wanted.
Yeah.
>> So it must have been
at some point in your life,
maybe as a teenager or younger,
maybe even recently.
It must have dawned on you,
really dawned on you,
that the reason they did this
was for you, not for them.
I mean, partly,
probably for their workload,
but they did it for you.
Pardon the question, but
how does one grapple with that?
Or maybe that's why
the film was made.
>> Yeah, I think in some ways it
probably is one of the reasons
that I made this film.
I mean, I think the process
of making the film actually
has sort of helped, not only me,
but also my parents, sort of
sort out what happened.
It's something that we don't
talk about every day when we
call each other on the phone
and go over, you know,
what's going on in our lives.
This isn't something that
we talk about all the time.
Yeah, I think it's sort of
given me, it's certainly given
my family, my immediate family,
we're very close and tight-knit
as a result of this.
You know, it's something that
happens when something tragic
happens to a family.
There's sort of this, you know,
closing in, and trying to
sort of come together
and take care of one another.
I mean, I'm sure there are
all sorts of feelings of guilt
and worry.
I'm only now starting
to begin to imagine,
sort of as you guessed,
what this must have been like
for my parents.
As I grow up, and as I think
about having my own family.
>> We all sort of empathize
with our parents as we grow up,
don't we?
>> Right.
And so, you know,
when we revisit this story,
and the times that we do,
especially through the process
of making this film,
coming to really realize
what they went through.
It's been an incredibly moving
experience for me.
>> One word that didn't come up
was resentment.
Do you resent?
Is there any point
when you're honest,
that you resent having this?
I felt a little bit
in the intro, almost,
just a little bit of resentment,
maybe as a teenager,
but do you resent having this
as part of your history?
Do you just wish that this
didn't happen?
>> Of course,
there's a part of me
that wishes this didn't happen.
You know, I would love to have
siblings.
And I hope that when
I have children, I will be able
to have more than one child,
so that my children can have the
experience of having a sibling
who is responsive, and with whom
they can have a relationship
that is more than just one
that is sort of, you know,
there because it's there.
I mean, I loved my sister,
but our relationship was not
a normal sibling relationship.
I don't think
that I feel much resentment.
I don't think that
I would put it that way at all.
I think that, you know,
in terms of the effect
that it's had on my family,
I feel that I have such
a wonderful relationship
with my parents, and that
our immediate family has become
so strong because of this,
that, you know,
there are aspects to it,
while I would trade them all
for, you know,
having Vali back and whole,
to have had that experience.
You know, what we have
sort of gained from it,
by being able to get through
all of this, is something that
I feel is truly, truly precious.
And so in that sense, yeah.
>> Let's see another clip
from your film.
I think one of the things
that was kind of surprising to people when Vali died
was how much of a celebration her funeral was.
And that was by design.
My mom was, "No one can wear black!
I don't people wearing black to the funeral.
I want people to wear bright colors."
Of course, the morticians or whatever
made her look absolutely ridiculous.
You know, they did her hair all...
>> You know, I have two little
kids.
I have a son who's three.
And I have a daughter who's one.
And I remember the day
we took her to get these shots.
And I think for a lot of people
in my group,
my friendship network,
we're leery of the shots.
Shots, you know, "shots."
We're leery of them.
But daycare, and other issues,
we do it.
We're not as educated
as we should be, but we do it,
and we're aware of the risks.
It's interesting to me,
because your film
really touched a nerve for me.
Like, I'm really--
It's funny, I watched the film
on a Saturday.
And my daughter who turned one,
you get the last kind of round.
And I was like,
I can not watch this film
until she gets her shots first.
But then I thought,
"Oh, my gosh, why am I
having her get the shots?"
Your film really touches a nerve
in people.
Have you had a lot
of really strong reactions
from people seeing it?
Because I'll say one thing, my
wife could not watch the film.
>> Well, I have had people
ask me, sort of, you know,
my position on these things,
and if I'm trying to make a
particular political statement,
and those sort of things.
I mean, especially, you know,
there are things in the news
every so often that sort of
bring up this issue again.
It's an age-old issue
of public health.
You know, the risk
to the individual versus
the risk to the community.
That's something that,
there's always that tension.
I think that's a tension
that's there in the film,
but it's not really, you know,
on the surface.
What I'm more interested
in dealing with in the film,
is just sort of illustrating
what is behind that one
individual who, you know,
I guess is not really
sacrificed, but you know,
who suffers for the sake
of the community.
I think that, you know,
my interest was more sort of
eliciting the story that,
you know, you don't see
when you look at the statistics.
>> The one in a million chance.
This is the one.
But there's still a question
that begs to be asked.
And maybe I'm making it
more personal.
You talked about when
you have children, you want
your children to have siblings.
Do you want your children
to have shots?
Are your children
going to get shots?
>> I think they'll probabl
have to.
You know, it's a question
I ask myself from time to time,
obviously.
>> I'm sure you do.
>> I think about these things
from time to time.
I do think about, you know,
the family I would like
to have in the future.
I don't think it's a question
that I'll really be able
to answer in full
until that moment comes.
You know, I'm not a parent.
And I feel like, you know,
maybe.
It's hard to say what I will,
or how I will feel when
I am one.
>> What about mom and dad,
future grandma and grandpa?
Do they want their grandchildren
to have shots?
>> Well, I don't think
that my family is on
any sort of crusade to do away
with vaccinations at all.
I think that, you know,
one of the things that sort of
as a result of Vali's situation
that I grew up with,
was just sort of an attitude
toward questioning
some of the things that many
people sort of take for granted
when listening to their doctors.
And so, I think
that one of the lessons
that I've taken away from it
is just to become educated
about the risks of things.
And then, you know, you make
decisions, you take the risks.
You know, you have to do that
every so often.
And as I've grown up
and become responsible
for my own medical care,
I've had to make these kinds
of decisions for myself about
sort of optional, you know,
vaccines, like the flu shot,
and things like that.
I don't get flu shots,
because I figure the marginal
benefit versus the risk on that
is probably not, you know,
to me, it's not really worth it.
But maybe I'll feel differently
when I'm 85.
So I think that, yeah,
it's a difficult question
to really pin down an answer to.
And one that remains open ended,
I think, for me, and
for my parents in a lot of ways.
>> I would like to show viewers
yet another clip from the film.
This is one of my favorite ones.
I think it really shows
the love of a mother.
Let's roll that clip.
Having Vali certainly emphasized
the blessings that we did have.
And it certainly put all of our focus
on nurturing you.
And it was probably a gift, too.
So thank you, Amrys, for being in our life.
And thank you Vali, for being in our life.
>> Moms.
Don't you love moms?
>> I do.
>> What would the world be
without moms?
That's so beautiful.
That is so beautiful.
You know, it's funny, you're
studying to be an historian
at the university, right?
>> Yes.
>> You just made a documentary,
which an historic document.
But it's so personal.
Can the personal be objective?
Or is objectivity even a goal
for historians?
Should that even be the goal?
>> Well, the objectivity
question is certainly something
that, you know, has come under
all kind of academic debate.
I think most historians
these days feel that, you know,
objectivity is something
one can never truly obtain.
We're all people who are
situated in our own, you know,
we have our own opinions
themselves.
And we come to things
with our own preconceptions.
And I think that one of
the reasons that I think
this film works, and that
really made me interested
in making a film about
the subject which, you know,
I do sort of have an academic
and intellectual interest in,
you know, studying history
of science and medicine.
You know, public health
controversies are intellectually
interesting to me.
But because of my personal
connection with the subject,
it would be very difficult
in a way to write
a more objective style.
Looking at the documents, a
seminar paper kind of treatment
of such a subject, about
you know, controversies
over pertussis vaccination,
or something of that nature.
And so the opportunity to
make a documentary film
about something personal,
and really feel like
I have the freedom
to put myself into the piece,
and really tell that story from
a very personal and emotional
and very honestly emotional,
openly emotional,
in such a fashion,
was really kind of liberating
in a way.
And I think that, you know,
there's a power to arguments
that are marshalled
through documents, and reason,
and argumentation.
And those things certainly
have a power which I believe in.
But there is another
kind of power that comes from
the personal and the emotional,
I think.
And this is something,
the process of making the film,
has really made me realize.
So the power of saying
this is my story, is a very
different kind of message.
But it can be equally effective.
So that's something that
I've learned a lot about
through this process,
the different kinds of stories
that we can tell.
>> You know, from the feminist
movement to the civil rights
movement, there's a mantra
running through it
for many people, which is
that the personal is political,
and that no matter what happens,
and you were saying the film
doesn't have an agenda.
The personal story, because
people are touched by it,
becomes political.
So this is a political film.
People can use this film to
look at it in a political way.
How would you like people
to use this film?
Are you asking a question
with this film?
Are you answering something?
Or is it just, hey,
this is a slice of my life.
Deal with it and do
whatever you want with it.
Or do you have something else
you'd like to see happen
around that?
>> I think the film probably
asks more questions than
it answers in a certain way.
>> A good job in a story.
>> I think that, you know,
obviously there's a part of it
that's just about the
opportunity to really articulate
a story, an opportunity
both for me and for my parents,
for us to really tell a story
that I think we spent
a long time thinking about,
but just haven't really had
the medium, or the moment.
Or, you know, the sort of
opportunity came along, and
we were able to tell this story
in a way that really helped
my family really think about it.
And it's been an incredible
experience, I think,
for the three of us to really
go through this process
of how do we put together
a story.
What does this mean to us,
and really figuring that out
in a conscious way.
You know, I had experiences
when I was interviewing
both of my parents,
where they would have these
sort of revelatory moments,
and realize something
about their thoughts,
about the experience that had
never occurred to them before.
So there is certainly that,
I just want to tell a story
aspect to it.
But I think that in terms
of what I hope people take away
from this film, you know,
I think that what I hope
people take away is that
there are always people--
There are always stories
behind the clinical,
and behind, you know,
a sort of more scientific
or legal story
of what's going on.
And that it's important
to think about those people
who are often in the background.
And I think that the power
of film is really being able
to bring those stories to light
in a way that, you know--
Maybe not so much with
social history and more recent
forms of movements within
the historical discipline,
but that, you know,
the documents that you think of
when I'm going to write a paper
about public health, you know,
you might be looking at medical
documents, or things like that.
They hide as much as they reveal
in a lot of ways.
I have a professor whose advice
is always, you know,
when you look at a document,
think about how it's telling you
the truth
and how it's lying to you.
Because it's always doing both.
I've gotten a little off-topic.
>> That's fine.
I just want to thank you
very much.
You made a film that absolutely
will make me think about shots
and the medical establishment
differently.
Thank you very much
for sharing your film with us.
That's our show for today.
If you want more information
about Amrys' film,
"I Have A Sister,"
please go to our Web site at:
wpt.org/directorscut.
I'm Charles Monroe-Kane.
And until next time,
this is Director's Cut.
Check the gate.