%
♪ ♪
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 isDirector'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 isDirector's Cut.
% Check the gate.