Inclusion in education
and employment
Dr Lou Brown
Abstract
- A summary of experiences
of the development of
inclusive education and
employment practices in
the United States of America.
Keywords
- Down Syndrome, Inclusion,
Education, Employment
In
1929, the average life
expectancy of a person
with Down syndrome, in
my country (the United
States), was 9 years of
age. It was very hard
to keep them alive. As
you know in many parts
of the planet, we’ve
got better and better
at helping people who
are in biological distress
live longer and the big
push came during and after
World War II. After World
War II, many countries
put a lot of time, effort
and money into trying
to help people who were
harmed in the war effort,
and after the war, many
of those people who were
helping during the war
went to further education
and pursued careers in
the helping professions.
So,
after the war, we also
had a lot of people going
back to school and learning
how to help other people
in distress, but we also
had a very big baby boom,
and a lot of the babies
that came out after the
war, would have died before
the war. Now we had more
people, more information,
more techniques of helping
people in biological distress,
so they lived longer.
Many
of those people, those
children who were born,
had Down syndrome or other
severely disabling conditions.
After three or four years,
parents started to say
"it’s not good
for me, to be with this
child 24 hours a day,
seven days a week. It’s
probably not good for
the child either."
Well, what was there?
What was available? Basically
nothing. So some people
who had a lot of money
found a private place
to send their child away,
to a nice clean place,
usually in a country environment.
Not too many people had
that kind of money nor
did they want to send
their child away.
Other
people in my country put
great pressure on the
Government to build more
institutions, more special
places, until more people,
more young people, were
put in institutions in
my country. It was a horrible,
horrible disaster. It
was a terrible thing to
do - but we did it, we’re
trying to live it down
now, but we did it.
Most
people who had children
with Down syndrome and
other severely disabling
conditions, kept their
children at home. So,
this person met that person,
and said "how about,
I have your child this
weekend and you have my
child next weekend?"
and he said "OK."
Then they heard about
another person with a
child with a disability
and they said "how
about if we help you too?"
and then they set up a
little group. Then they
started washing cars and
selling cakes and having
garage sales and getting
private donations. Then
they got a little place,
usually in a religious
facility of some kind,
a synagogue, or a temple
or a church and they set
up a day programme, where
their children who were
disabled and who could
not go to regular schools,
could go during the day.
This movement spread,
all over my country it
spread. The private day
care centre phase. What
went on then, is going
on now.
Every
year, more and more babies
are born with severe disabilities.
Every year we get better
at keeping them alive,
every year they live longer
and longer, and they keep
coming, year after year,
more disabled and needing
more support and living
longer and longer. No
one really predicted that
in 1945/50. So what is
happening is, every year
you get more new babies,
but also you get new parents.
So
every once in while one
of these new parents would
come to me, the professional
in the school, and say
"I would like to
enrol my child in the
Madison School."
We would say "Lady,
you know, we don’t
serve kids like yours
in the public schools,
but there’s a nice
programme over there,
‘Up and Down’,
‘Forever Children’,
‘Kindle of Hope’
- you should go over there,
you’d like it."
Those
parents went and they
found other parents in
the same boat and they
found understanding and
acceptance and it was
great. Then one parent
turned round and said
"we go to a public
beach and there’s
no problem, we go to a
public park we have no
problem, we go to a public
concert we have no problem,
we come to a public school
- we have a problem. Why
is it, the only public
place we have a problem
getting in to, is a public
school?"
See
how these parents always
twist these things around?!
So, they would come to
our school board and want
to talk about the meaning
of the word ‘public,’
they would write letters
to the newspapers, and
then other parents would
say "yeh, I’ve
been thinking about that
too".
Then
what they did in my country,
was they set these ‘pinko-commie-homo-cells’(!)
and they started infiltrating
and getting involved with
campaigns and legislators
and government and they
got a law passed. In 1975,
they got a law passed
in the United States,
all children have a right
to a tax supported education
- all children. All means
ALL, right? What do we
do now that we are legally
responsible for serving
all children? Well, we
looked around, we had
no experience with these
kinds of kids.
So
we looked around and said
"Well the parents
set up these special places
for them, so that’s
what we’ll do."
So all over the country
we set up these special
places, these special
schools for children with
significant intellectual
disabilities. I thought
this was a good idea -
"I would like to
enrol my child in the
Madison School" -
"Lady, we have more
stainless steel and ceramic
tiles than any other school
in the States - elephants
can go to the bathroom
on our commodes - we have
no steps, no door knobs,
this is a perfectly sheltered
place - all the services
are here."
All
you had to say to the
parents was "the
services are here"
and they’d do anything.
They are unbelievably
vulnerable to this concept
of ‘the services
are here. Of course you
have to get your child
to the services’.
So we put our services
in this special school,
we built this school up
to 160 something students
who are happy and things
are going really well
and I’m a professor,
and I train teachers and
I put all my practice
teachers in this building
and walk down the hall,
and it was easy, it was
nice, it was efficient
and it was nice.
Then
one day, this lady came
in and said "I’d
like to enrol my child
in the Madison School".
We said "We’ve
got this wonderful place
here, especially designed
for your child, special
protection for your child
- you know, you’re
going to love it!"
She said "I’ve
been thinking, we go to
church with normal children,
we play in the park with
normal children, the baby-sitters
are normal children, I
thought maybe we could
go to school with normal
children?" We said
"Ma’am, have
you considered therapy?!
Don’t you know that
when you have a child
that looks funny like
yours, the first thing
you try and do is deny
it? Parents go through
this denial phase. You
know the first thing you’re
going to have to do, is
confront reality, you
really have to get through
that denial phase and
get real!"
That’s
OK with some of them,
but there’s always
some that ‘hang-on’!
Anyway, we said "Ma’am,
don’t you know how
rotten normal children
are? Don’t you realise
that Saddam Hussein was
once a normal child? Haven’t
you heard about pushing
wheelchairs down elevator
shafts and ridicule and
the bathroom. No! No!
Normal children are miserable,
miserable human beings!
You don’t want your
child near them! No!"
That’s OK for most
of them, I mean how many
parents can stand up to
that kind of stuff, right?
But there’s always
a few crazies that hold
out until the end - ‘we’ll
show you scientifically,
so we thought, we’ll
prove to you scientifically’.
So,
we’ve got this group
of parents who are very
happy with their children
in a retarded school and
then some parents who
were very unhappy with
that possibility, and
they want their children
to go school with normal
children, if you would.
So, OK. We matched them
on mental age and all
that stuff that we match
them on, and we had a
group going to the real
school and a group going
to a retarded school.
Every month, we’d
have our multi-disciplinary
group and we’d assess
them. Language, motor,
imitation, self-help,
social, and after six
or seven months, it became
obvious that the kids
that were going to the
normal school, with normal
language models, social
models, behaviour models,
were doing better than
the kids in the retarded
school.
So
we looked at our data,
and it was "Wow!
What are we going to do
now?" Well, being
responsible professionals,
you understand that we
could only do what we
had to do under the circumstances
- we lost the data! Those
families who get involved
with Jane Fonda and jogging
and that, why don't they
leave us alone? But, no,
they would bring other
parents along and say
"Look at that! Isn’t
that great! Don’t
you want that?" "Yeh,
I want that. If you can
have it, why can’t
I have it?"
So
we had to set up another
class, then another class
and another. Then one
day, our school attendant
looked at this big facility
with all these special
things and there’s
no one in it and it’s
getting emptier and he
said "Close it".
We said "Sir, the
parents of the older kids
want their kids to finish
here". "I don’t
care! Close it! We can’t
afford that, it’s
ridiculous, bussing those
kids all across town,
spending all those dollars".
"No, we have space
in all those other schools,
spread them out".
So we did. In 1976/77
we closed our segregated
school, our handicapped
school, the last one in
my community.
So
now what do we do? Well,
this is very important,
extremely important. This
is the logic of our profession,
I’m sorry it is
the logic of our profession,
but it is and you have
to really be careful of
it. What do we do when
we’re under orders
from our school administration
to close our last special
school? Well, we said
OK, look, if they won’t
let us have this great
big pile of the most disabled
children we can find in
the City, what we’ll
do is we’ll set
up little piles. So we
move from big piles to
little piles. We set up
these little special areas
of other schools around
the City.
Now,
why do we do that? Please,
it’s very important.
Well one reason we said
in those days, we don’t
have the money to make
every single school building
in Madison, Wisconsin,
barrier-free. So what
we’ll do is, we’ll
spend some money and make
some buildings barrier-free
and then we’ll bus
children in there and
create an unnatural pile
of kids with disabilities,
whether or not they need
a barrier-free environment
is irrelevant, we want
them in there.
The
second reason we set up
these little piles, in
different schools, is
because we found out that
special education professionals
hate regular education
professionals! You should
have heard our special
education teachers - "they
didn’t do the same
course we did at college,
they don’t have
to do our IEP’s",
our therapists said "you
never see them on the
floor, they don’t
have to wear white all
the time, no we need to
be with our own kind".
There was tremendous professional
pressure for special education
professionals to be with
each other. We had bowling
teams at the special school,
that wanted to go to the
other school intact, so
we could keep the bowling
team together!
The
third reason why we set
up these little piles
of kids with significant
disabilities, including
Down syndrome, was because
we argued in 1976, that
regular professionals
are just not ready to
serve these children,
maybe 15 years from now
they will be, but now.
Of course, that was last
year! So we did it, and
then I felt good about
it, I thought it was a
great idea, I learned
- and it is hard for me
to change, but I learned.
We used to try and defend
our segregated school
and now we say "Ha!
Ha! We’re advanced.
All our kids go to real
school. All our kids go
to chronological age appropriate
real school. It’s
so much better."
Then
one day, this lady walked
in she said "I would
like to enrol my kid,
Andre, in the Madison
School." We said
"Ma’am, we’re
going to have to assess
him first". She said
fine, so she signed the
paper and we assessed
him. Monday, Tuesday,
Wednesday and Thursday.
Very complicated. On Friday
we sat the family down
and said "Ma’am,
Sir, your son Andre is
medically fragile and
profoundly retarded."
She looked at her husband,
looked at us and said
"You know, I could
have told you that last
Sunday".
So
we said that we were going
to enrol Andre at School.
(Mum) "School. Where’s
that?" "It’s
the next elementary school
over from Markett School,
which is the one that
your other children go
to." (Mum) "You
see Andre, we take him
to the park and he can’t
play with normal kids,
but he’s alert more,
he looks, he watches,
he’s getting to
know the kids in the neighbourhood,
and the baby-sitters,
because we need some help
with Andre, we want the
kids in the neighbourhood
to help Andre, so they
can get to know him. He
goes to the religious
service with the kids,
so we want Andre to go
to the school with the
kids from the neighbourhood."
And
we said "Look Ma’am,
you have to try to understand
this, we don’t have
enough kids like Andre
to make a class of kids
like Andre, in the school
in your neighbourhood."
She said "Now you
have to try to understand
this - I don’t want
Andre in a class full
of kids like Andre. When
you put Andre with kids
like Andre, he bites the
back of his hand and whacks
himself on the head! When
you put him with normal
kids, he looks, he watches,
he tries to do things..."
So we say "Oh no!
What do we do with these
crazy people? I mean where
do they get these ideas?"
So we had a meeting. Twenty
people in the meeting.
When
the meeting started, all
twenty of us were convinced
that this lady was crazy.
At the end of the meeting,
we said what points is
she trying to make and
how are we going to counter
them? What points are
we going to make and how
is her lawyer going to
counter them? At the end
of the meeting, out of
twenty people, 16 thought
she was still crazy, two
were undecided and two
thought
she
had some pretty good points.
So we had to meet again
and then it was a 10/10
split. Then we had to
meet again and we said
"They did it to us
again! Now we’re
going to have to change
again."
PROFESSIONALS DON'T GROW
UNLESS PARENTS WATER THEM.
So
in this very difficult
process of converting
from clustered schools,
little piles of people
with disabilities, to
a natural distribution,
a kid goes to the same
school she would go to
if not disabled. That’s
what we call the home
school. We don’t
say neighbourhood school,
because a lot of kids
don’t go to the
school in the neighbourhood
and the key issue for
us is to forget all the
word games, the critical
issue is that your kid
goes to school with the
preponderance of students
in her neighbourhood -
that’s the issue.
We’ll see why in
a minute.
I
have to tell you about
Aaron. One of my heroes
in life is Aaron’s
mother. Aaron was born
without the reflexes necessary
to suck or swallow, he
is deaf and blind and
has severe physical problems,
he is a classic child
called ‘severely
disabled’. He was
born, obviously disabled,
so his mum and dad would
come to these parent meetings,
that you guys have - you
know, the secret meetings
you have! She would listen
to what people who preceded
her went through, she
would listen. So she came
up with a slightly different
strategy to what most
people use in our country.
The
first day of kindergarten,
Aaron was five years old,
she took Aaron to kindergarten
class, to school, the
regular school, the school
down the street, where
his brother goes, and
she carried him up the
stairs to the second floor
to the kindergarten, and
she laid him on the floor
and she left a bag of
materials there, supplies,
and she said "I’ll
pick him up at 11.30."
Of course the kindergarten
teacher went bananas!
She got back at 11.30
and there were 17 people
in three piece suits waiting
to talk to her!!
They
said "Ma’am,
we’d like to talk
to you about your son
Aaron." She said
"Fine, what would
you like to talk about?"
"We’d like
to assess him and we need
your permission."
"Why do you need
to assess him?" "Well
he may be in need of physical
therapy!" It’s
true! So she said "OK,
my husband and I have
this arrangement with
our private health policy
where we get our physical
therapy privately, and
understand that there
is a shortage of physical
therapists in the schools
and in particular, a shortage
of good physical therapists.
So please take the physical
therapy services you would
give to my child and share
it with children more
in need."
And
we said, "hostile
biddy! Who does she think
she is? Telling us how
to do our services."
(Mum) "Is there anything
else?" "Yes!
Your child may need speech
and language....."
"Oh - don’t
worry about speech and
language, there’s
a lot of kids stuttering
trying to go to college,
help them and we’ll
work out something with
Aaron. Is there anything
else?" "Not
that we can think of."
So we come to Tuesday
and Wednesday and then
Thursday.
We
had one family we tried
to do the same thing to
- we figured we had her!
She went to school with
her child and we had a
fire marshall, from the
fire department. "Stop!
This child cannot go to
this school" She
said "why not?"
"Because we had a
fire drill yesterday and
we couldn’t get
him out in seven minutes."
She said "let him
burn!" We said "how
can a mother say that
about her child? I mean,
we are going to report
you for child abuse!"
She said "no, no!
You don’t understand!
I’m in this parent
group and they said you
were going to play that
trick on me! So they told
me what to do.
They
said to walk around the
school until you find
a sign that says what
year the school was built
and I did. This school
was built in 1933 and
then you go to the nearest
fire station and ask them
when the last time there
was a fire in this school,
and I did. They said they
hadn’t had a fire
here since 1933. I’ll
take my chances - let
him burn! Is there anything
else?" What do you
say to a lady like that
?
So
you’ve got to keep
score somehow, so on the
issue of home schools,
the schools she would
be attending if she were
not disabled, how are
we doing? Well we have
four high schools in my
community, all schools
of national excellence
by the way. All four schools
serve the students with
disabilities that would
go there if they were
not disabled. They are
what we call home schools
and we are very happy
about that. Some of them
still have special classes,
some of them don’t
so there is still work
to be done, but at least
they go to the school
they would attend if they
weren’t disabled.
We
have nine middle schools
in our community. Six
and a half out of nine
serve kids that would
attend if they were not
disabled. Two of the middle
schools, the kids that
would go there are bussed
to another school, forming
an unnatural pile in the
other school. You may
ask why six and a half
out of nine, why not all
nine?
The
answer is very simple.
If you read the constitution
of the United States,
it says very clearly in
the future, 200 years
from now, if the schools
are overcrowded what you
do is put the most disabled
children on a bus and
send them away from their
brothers and sisters and
friends and neighbours.
We say no, to be fair,
you should put all the
names in a hat and pick
out names randomly and
give everybody a chance
to be on the bus. Or better
yet, put the gifted kids
on the bus, at least they
can read! But why would
you take Aaron? So it
changes, next year it’ll
be seven out of nine,
you see there is no educational
logic for it, there is
no scientific foundation
for it, it’s just
always been done that
way, it’s just convenient.
Now
we have 29 elementary
schools, we have home
school on demand, if a
parent is clever enough
to say I want my child
to go to a school with
all his brothers and sisters
and friends and neighbours,
they get it, all they
have to do is ask for
it. Take Mr Schwab, he
is a classic example.
He didn’t like the
special class in the school
far away, he said "I
want this" and he
got it. We have so many
kids in home schools the
district has no defence.
They know this.
The
problem is the poor people,
the uninformed people
who get suckered in to
the "services are
here, you got to get your
kid to the services",
and this makes so much
sense to the uninformed
parent, they say "yes."
What they don’t
realise is the services
we have in these schools
are portable, services
go anywhere. Do you want
your kid running around
a bus all day, or your
therapist? Your therapist
of course. .......
Acknowledgement
Speech
given at the International
Conference on Down syndrome
in Orlando, USA, August
1993