- Both of you for coming,
thanks so much, it's great to see you
in person for change,
'cause I know when I'm watching you on the screens,
you can't see me.
(Marianne laughing)
I've been just recently informed about that.
- It's been a busy, busy good year.
- Yeah, yeah. - Yeah.
- Talk to me about Jesse,
tell me about your son.
- Well, Jesse was born two and a half months premature,
and on the third day of his life,
he had a grade four cerebral hemorrhage,
so as a result, he was quadriplegic and nonverbal.
So this was 1987, so there were a lot of challenges
coming up for that,
because it was pre-internet.
I see now that parents of children with disabilities
have internet communities that, they're almost,
it's less lonely, because you immediately
find a brotherhood and a sisterhood.
- We had to seek parents
a couple of years ahead of us
who were in the same situation, locally,
to educate ourselves.
- Literally using a newsletter,
like a snail mail newsletter,
which seems Jurassic at this point, but that's what we did.
But we faced real,
our first challenges were against the medical community,
quite frankly,
who wanted to intervene and do all kinds of things,
and then it was with the educational system.
We really wanted inclusion for our son.
We knew, - Inclusion being--
- Inclusion in a public school.
We wanted him to take full advantage of his
basic civil right to a free and appropriate
public education, but we were in New Jersey,
and the preschool we were in
was not an integrated preschool.
He was segregated from the rest of the population.
- As often, to interrupt it, to add a little light here,
often in those days and sometimes in these days,
inclusion was not inclusion.
- That's right. - It meant often
that the child would be in the room with the other students,
but there wouldn't be
any programming if you will. - Absolutely.
- No challenges. - Right.
- No challenges. - Absolutely.
- So they were meeting the letter of the law--
- Yes. - But not necessarily
educating, right. - So we moved here,
because Massachusetts then had, was above the federal
average for inclusion, but the town we moved to,
he was put in a collaborative,
and the minute we walked in,
it was as if he were a second class citizen.
He was in a room at the back,
segregated, there were used--
- Wrestling mats. - Wrestling mats
stinky wrestling mats on the wall, I was
horrified. - No windows to speak of.
No windows.
It was, I was outraged by that, and
so we wanted him in the,
and he got to visit the regular pre-K
for an hour a day, it was totally,
"You are a second-class citizen
"the minute you crossed the threshold."
That was the message to our son.
- [Sue] So what did you do?
- Wow, we got an advocate,
a disabilities advocate lawyer,
and we stated our concerns,
and then we got right to work.
It didn't, I mean we were involved for a year and a half?
Year and a half? - We were in a year-and-a-half
battle to get our kid his basic civil rights.
What happened was,
he was allowed to go to the local first grade,
but what happened in the local first grade
was that he was not being included,
and in fact, our kid, who was a sunny temperament boy,
was tantrumming three times a week,
and we knew that something was going on.
We found out that he was,
that the aide was saying things like,
"He don't belong here," and "Between you and me,
"we both know where he's gonna end up."
- And would you say that, you know,
he went on to be
a very bright student. - Right.
- Once we got-- - He was in the
99th percentile when he was tested correctly.
- Once we got over the hump, he flourished,
he just flourished - Yes, but the
testing, they insisted,
when we got into it with them,
they insisted that he be tested
by their person that they sent,
who gave him a Stanford-Binet IQ test
with no adaptation for his disability,
none! - Because you make a point
in the film, which I've learned a lot about the IQ test,
the history of the IQ test,
why it's so controversial and what it's based on,
but one point that you make in the film about
one of the questions that Jesse was asked,
which speaks not only to the ridiculousness of the test,
but also the cultural barriers that people have,
about the dusting and the bureau, right?
(Marianne laughs loudly) - Yeah, and I'm
assuming that this questionnaire was developed,
I don't know, I can't remember,
in the '20s, the '30s,
and the antiquated structure of these questions,
"Jesse,
"do you dust a dresser?" - No.
- Well,
we don't call, we call,
we call a dresser a bureau,
and Jesse certainly,
we don't ask Jesse to dust, you know.
- (giggles) He actually laughed
when he said that to him, you know?
- So it was-- - But his tutor,
who was in there with him came out and said,
"Give me a cigarette."
And I said, "You don't smoke."
And then she revealed, she said,
"It was a standard Stanford-Binet IQ test with no adaptation
"for his disability."
and they would hold up the
something and wanted Jesse to point to,
and Jesse, you know, he had to tame his wavering arm--
- To point to it. - And he would start
to point, and he'd like flip it over to the next thing.
And she said, and it was three hours, he was six years old.
- You know-- - Without a break.
- This is one of those things that I'm,
you probably wouldn't have experienced this if Jesse--
- Right. - If you hadn't had Jesse.
- If he'd been verbal.
- You know my daughter had a speech delay,
and during the testing,
they showed her a picture of a rifle, right?
- What? - And say,
"Could you name this?" right in one of the flip cards,
because they were all so antiquated.
Right, everybody is using
these things. - Yes, we use that
to catch our possum for dinner.
- (laughs) Every household has one,
well it's actually America,
so probably every household does have one.
So you know you're coming at this
from a certain level also of privilege, right?
- Yes, yes. - And you're both educated.
You both have access to resources that other folks didn't.
What kind of feelings do you have
when you're realizing that this must be happening
to all sorts of people? - Oh, absolutely.
- We have, I mean,
Marianne's mother was first-generation.
- No, my mother was Italian,
I'm first generation. - Was Italian.
(all laughing) - You're first generation,
but Marianne often thought,
well, if this was the case with Marianne's mother who,
English was a second language,
and they used delays, obfuscation--
- Acronyms. - Tech language.
- How would you
understand that. - You know, technical language
that was way above us.
It would've, Marianne's mother would have given up.
She would've been overwhelmed.
You know, and we honestly,
we talk 1,000 times how this must affect other families.
- Yeah, imagine if you were a single mother
and you've got three kids, and one of them is Jesse?
And you're dealing with this.
You can't even get time off from work,
and, wow, or and then add to that
that English isn't your first language.
- Thank God we had the luxury that both
of us work out of our home.
- Right.
- And to imagine a nine to fiver or whatever
dealing with this, it's...
- Yeah. - Can't imagine.
- So obviously, sadly, Jesse is no longer with us,
he died unexpectedly,
but it must give you some solace
to continue working on issues that
were important to him and important to your life
and give such sustenance to other families.
- We have good, we have good friends
that are a little younger than us
who are in the same position with their children.
And I'm observing
our friend's son
and seeing, at three years old,
with a strong disabilities you know,
working with an iPad, and what he could accomplish.
- Yeah. - And if Jesse had had that--
- Well, Jesse,
they had a program at Boston College
where they had an eye gaze computer
and they attached electrodes
around Jesse's eyes. - It was early, early testing.
- And he was able to play a video game with his dad,
and he won. - Beat me.
- And he giggled all the way home.
And he was also able to prove to us that he could read.
Because his eye would light up the words on the screen,
and so the sentence that he read was,
"We wanted to fly the kite, but the wind was too strong."
And it was hitting up each word, and I said,
"So which word up there describes you?"
"Strong, strong, strong."
He was six, I knew he could read.
At school, they were making him repeat the alphabet,
you know so,
and then when the crazy mother says,
"But he can read," you get the eye-rolls.
- You know, so...
- So this film focuses on a number of individuals,
a number of young people
who are differently intelligent,
if you will. - Yeah.
- That don't fit into the norms, and have challenges.
What do you hope folks take away after they watch the film?
- I watched this film, I guess I've seen the film
five, five, six, seven times, and
my one-sentence summary, time and time again,
with the Q and A's that are asked,
I look at this film, and I say,
"It comes down to community, it comes down to community."
We can do, you know, federal and state work,
but to look at these kids, these young adults,
you see that it's the immediate community that comes in
and assists these folks to find a means to,
you know, live independently.
- Also, it's about presuming competence.
Just presuming competence, presuming that,
and also-- - Real important.
- And the end to otherizing people.
And this goes for everybody,
but it ends that otherizing.
I see the difference, I didn't go to school
with kids with disabilities.
Or even kids of different races or whatever,
and I see from Jesse's friends, even now,
the difference that it made in their lives.
- Right, we focus a lot on conversations like this,
about what it's doing for the individual who has
the disability or who is the quote, unquote other.
But we often don't talk about the positive impact that
diversity has on the rest of world.
- And I said over and over,
Jesse is not here to inspire everybody else.
Because that makes me gag,
but he did, I mean, the fact is,
he did inspire other people,
but he, his best friend that he met in middle school,
which we were afraid to send him to,
because I said, "I don't know, that's when boys fight.
"What if they knock over his wheelchair?"
We were, like, really nervous about it.
He met his best friends there, plus his girlfriend.
And his best friend is now a PhD candidate in language.
(Marianne laughs) - Of all things.
- Right, of all things. - Which is so interesting.
- One of the challenges too,
and I think telling the story,
like I said, my child had a couple of challenges,
chronic illnesses,
you're in a suburban town of Massachusetts,
and you're fighting for resources,
and you hear stories of other parents,
and it's almost a requirement to challenge providers
to step out of their boxes and their checklists
in order to see the students
and see the people as individuals who have potential.
- That's right. - Rather than
what they're either required to do,
or what the minimum is
that they can do, right? - Right, right.
- Well, that was,
when I'm looking and Marianne,
you know, the business that I'm in took me away from home,
sometimes months at a time,
so the load was on Marianne's shoulders,
but she did exactly, I think that was
exactly what she did in her fight,
in making,
making these people pay attention,
and she's a smart gal, I mean she could see
when the obfuscation and the delays and the tactics
that they were...
- Yeah, using. - Using,
fortunately, she dealt with them really strongly.
- (laughs) Not surprisingly,
from what I can tell so far. - We wished, we wished
and we just wish-- - I thought I didn't
have a lot of fantasies.
- I just wish other folks the same.
- I bought a punching bag during that period.
- That was a good idea.
- It was. - I think so,
America thank you for that.
(Marianne laughing)
I also thank for sharing the story.
I mean it's, you know,
we're talking about the film, obviously,
but you've written great editorials for the "Boston Globe".
You've got books and writings that are out.
The creative process,
I mean obviously you're both actors and creators.
It must be a great place for you to continue to express.
- Let me, you know, Meryl Streep was on
a couple of years ago,
and she was talking about how art is born of empathy.
If you don't have empathy, you can't create art, you cannot.
And we are forever grateful to our son for that.
He is our true north, and he is the one who has
deepened whatever innate gifts we had.
- He was our greatest teacher.
- Yeah. - And he really
showed us what was important.
This business that we're in can be very selfish.
- And tantalizing. - And very self-indulgent,
but Jesse was a constant reminder of
a great, living the simple life,
believe it or not, you know,
we live pretty normally.
- I've heard that about you two.
(Marianne laughs)
I also hear you bring, and I know you bring
some humor along with the compassion to the story,
so if folks are interested in picking up
"Jesse: A Mother's Story"
to know also that it's,
there are some good laughs in it as well.
- I wanted to honor that about our son,
because he was, as we said,
the first person to get the joke at the table,
so he would've enjoyed that.
- Thanks so much to both of you for coming,
and great to meet you.
- Thank you. - Thank you.