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. .......
AcknowledgementSpeech given at the International Conference on Down syndrome in Orlando, USA, August 1993