The systematic segregation of disabled children must be one of the worst crimes that a state can commit.

The birth of a disabled child is more often than not perceived as a tragedy by all who will play a significant part in their lives --parents, siblings, relatives. As a parent of a disabled child, I know about the heavy reliance on doctors and social care professionals at this time -- especially if they hold your child's life in their hands. Parents quickly come to rely on these professionals for advice and support even after the initial trauma is over.

Parents turn to people in similar situations who have been guided by doctors into impairment-specific self-help and advocacy groups. Because of their impairment specificity, the focus is on cure or repair to as-good-as-new. Parents think that if they can understand what's "wrong" with their child, they will be able to help them.

The parents for the most part have lived in a nondisabled world. They think that to get their child to be as near normal as possible is more important than English, reading, writing, or math. Disabled children begin skipping education for physiotherapy or other treatments.

What the parents really need at this stage in their disabled child's life is contact with disabled people themselves -- people who have the experience of living impairments, and who have experience with the consequential discrimination that is meted out.

It's in early childhood that the labeling process begins. The disabled child is repeatedly measured and categorized so that professionals can decide what resources are required, what resources are allowed, and who is responsible.

Then comes the big moment in the disabled child's life: their parents have to choose whether to send their child to the "special school" or to fight for a place in mainstream public education.

EDUCATION

There are countless perceptions of what we mean by "education." For me, education means more than just academic study and achievement. Education is about growing up -- in all aspects: making friends, developing relationships, and becoming aware of the adult world and the rights and responsibilities you have as a citizen. Education is learning about self expression -- about becoming part of a neighborhood and a community. It's about finding your identity and the confidence in who you are.

Education is also about discovering your own vision of what kind of society you live in and its diversity. Education is about finding your values and matching and comparing them to those around you. Education doesn't begin and end at the school gate. It is a continual process and it's unstoppable.

If we can go along with this wide ranging definition we can begin to see why segregation is so damaging to disabled children.

Segregation cuts the child -- and to some extent the parents -- off from their neighborhood and the resources that go with it.

The child and the parents are transported away from the neighborhood and into the realm of the special school with its "support groups." Friendships which could have been made on the block are lost. Informal parental support networks in the community are lost. he community and the system are not challenged by the disabled children -- the children are simply put somewhere else. Nondisabled children lose the opportunity to learn about our particular brand of diversity, about what we may contribute and what it is like to grow up as a disabled person.

And isn't this where the ignorance begins and the negative attitudes form?

The academic expectations of special schools are notoriously low. People graduate without being able to read or write. The focus is not on education but on making the child "as near to normal as possible," making them independent in personal tasks at the expense of academic learning. The program focuses on the child's healthcare and physiotherapy, delivered during school hours for the convenience of the professionals -- during the time children should be learning.

But by far the most damaging aspect of segregation is the attitude and internalized oppression it creates within children, within parents, and with nondisabled people.... have I left anyone out?

Is it any wonder nondisabled children often are scared of us? Is it any wonder they feel sorry for us when they are asked to donate money to us or to help us out? Is it any wonder that disabled children grow to see themselves as a burden and devise methods of getting attention? Inequality is born here.

For some disabled young people, leaving segregation is a real shock. They find that their qualifications don't mean much -- that the real word bears no resemblance to the world created by the special school. Indeed some special schools like Widener Memorial School actively encourage students to link with nursing homes on discharge.

INTEGRATION

For the past 40 years the U. S. has been attempting to integrate its disabled children into the mainstream system. There have been, over that time, some success, but also some failure.

Integration began under the false premise that the disabled child was a problem to be solved -- that resources should be set around each individual child to support them in what remained a "mainstream" setting -- in other words, "doing something" about us disabled individuals, rather than "doing something" about the education system in this country. This approach was designed to support the individual child -- but not requiring; it did not require the school system itself to change.

Given this piecemeal approach it is not surprising that the more "able" disabled were integrated first. This now leaves us with the task of either trying to integrate the rest of our disabled children, or moving to a model built around the idea of "inclusion for all" (see below).

Badly handled integration is often used as the reason for parents to send their child to a special school. Integration, done well, has led us to develop a model for the inclusion of all children -- so that the only reason that parents should chose segregation is choice. And that should be no choice at all.

The children and the parents of the integration period have both positive and negative stories to tell. Any change in the status quo has risks, but generally the risks of integration are a great deal smaller than the risks of segregation. The approach which typifies integration is basically "one child at a time, one district at a time.:" Victories come one at a time as well, without the deep systems change needed. We need a wider vision while at the same time fighting for each child. That wider vision is inclusion.

INCLUSION

"Inclusion" means that all children, parents and caregivers are included -- regardless of disability, race, gender, or class. All schools have a public duty to become inclusive and to adopt the inclusion philosophy. With inclusion, we are talking about transforming the education system and the philosophy of education.

Under this model the whole school -- including the board, parents, staff, and the children -- re-examine policies and practices systemwide. The neighborhood as well needs to ensure that out-of-school and pre-school activities are inclusive also.

The opportunity for all children to go to an inclusive school -- where they are made to feel like valuable members of the community, where they can learn their rights and responsibilities, where they can learn about the diverse nature of their community in all its aspects -- should be a right, not an option, for all Americans.

Inclusion and developing inclusive practice does not happen overnight; indeed areas that have adopted this model describe it as a process within a structure of systems change.

PENNSYLVANIA

The current situation in this state, and I suspect many others, is that we are currently focused on integrating some children into some mainstream schools. There are individual examples of good practice and bad and failed attempts. Both state and local boards of education say they support integration. But without a stick, too few schools are taking the carrot. Individual mainstream schools should not be able to opt out of the process to become inclusive.

For this to change, we need political will to accompany the rhetoric that currently circulates. Most places adhere to the "compliance approach" to including disabled children based on the law. However much this approach is adopted, it will never satisfy parents, nor will it provide the education that every child deserves.

The other approach in evidence is the humanitarian approach adopted by the special school system. This approach contains many of the same value systems adopted by the segregationists committed to slavery, who insisted that would be more humane to keep slaves on the plantation because society was not ready to accept them.

The approach that inclusion takes, on the other hand, is a citizenship approach that treats all citizens equally, and recognizes and responds to their political and economic power -- so that all may truly fully participate and make their contribution to the communities they live in.

ADVOCACY IN EDUCATION -- NOW AND IN THE FUTURE

There is currently a good deal of advocacy in education, most of which is led by parents who support inclusive practice but are trying to fix integration. Education lawyers and advocates are also involved. Disabled children and adults are not yet really engaged in the process yet, however; they do not yet have effective networks of self-advocacy or form equal partnerships with parents and lawyers.

There are also parents who want to preserve the special school system -- particularly within the Deaf community and Blind community.

There are some excellent support networks for parents of disabled children who do and should continue to support each other on campaigns to include their children. However, it is my belief that we need a broader campaign to promote inclusion.

THE CAMPAIGN

This campaign should bring together disabled people, parents and caregivers, educators and legal advocates.

The focus should be on what we want -- inclusion -- not what we might be allowed..

We need to continue to support individuals, but more importantly, we need to build groups of disabled people and parents to work on inclusion issues.

We also need to attract dollars to develop advocacy with young disabled people, so that they can be truly involved in this campaign and so that we can learn from their experiences.

The campaign to promote inclusion must include but go beyond a complaint model. In order for inclusion to become a reality we need:

1. A commitment and understanding of inclusion from politicians at state and board level;
2. A clear and open policy backed up by a timed inclusion plan which is tied to funding;
3. An index for inclusion in all schools so that they can measure success and progress;
4. A statewide program of education for teachers, educators and administrators;
5. A capital budget plan which ensures that access is built into all school building and renovation; and
6. Disabled people's representation at all levels of inclusion at local and state level.

To get involved in this campaign or to let us know of other efforts at inclusion campaigns, email adaptdan@yahoo.com

Posted April 26, 2004.

Johnny Crescendo (born Alan Holdsworth in Salford UK) is a disability civil rights singer and songwriter, founder of Britain's Direct Action Network, which "uses public demonstrations and non-violent civil disobedience to increase the awareness and liberation of disabled people." Visit him at www.johnnycrescendo.com

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