Eli’s Choice

Eli’s Choice?

Michael Bailey

Portland, OR

A young man with Down syndrome “chooses” to drop out of his carefully crafted inclusion placement and opt for a self-contained classroom. The lack of social integration in high school suggests not only that his decision is correct but, indeed, inevitable. Why is that?

Is an inclusion placement impossible to implement in high school? What is inclusion anyway?

A Simple Choice

The Wall Street Journal, in a December 30, 2005 article by Amy Marcus, discusses an inclusion dilemma of a Maryland family. The article, Eli’s Choice, focuses on the “choice” the 14-year-old Eli made to renounce his inclusion placement and opt, instead, for a self-contained high school placement. The article emphasizes that this is Eli’s choice, made to the surprise of his family.  Eli feels lonely and isolated being the only student in his class with Down syndrome. Like all teenagers, Eli would like friends. And the friends he has are people among other students with disabilities. The “choice” is presented as a simple one. Friends vs. Social Isolation.  But, people created the customs of isolation and people have the ability to dissolve them.

The article implies tacit acceptance of the barrier of social isolation. What it should have called for are creative solutions, not surrender.

Eli’s mother was shocked by his choice. Her reluctance was mollified when she visited the school science fair where Eli was displaying his project. Even in that environment he asked her about his high school placement and she realized the level of his anxiety. “I really had to step back from my personal beliefs,” she said.

 Social Integration Presented as an Impossible Barrier

Given the results of a cited study by the Center for Social Development and Education at the University of Massachusetts in Boston, Eli’s choice is presented as inevitable. The study found that social integration of students with disabilities in high school has remained “stagnant.”  In spite of demonstrated success of students from inclusion placements living more independently as adults, having more friends and better jobs, the article implies that an inclusion placement is impossible, given the attitude of classmates toward kids with disabilities.

The cited study involves 5,600 seventh-grade and eighth-grade students from seventy schools across the country and concludes that while half the students said they were “willing” to interact with peers with disabilities during school hours, only one-third said they would consider social activities with them away from school. “Student attitudes continue to be the most formidable barrier to inclusion,” the study concluded.

Because there is an unknown factor, in this case social acceptance, the article suggests that families are paralyzed by fear of the unknown and, if not endorsing, at least acquiescing, in more restrictive placements. The choice is portrayed as simple: a happy child is a segregated child. Segregation is reality; inclusion a mere dream.

Why the focus on negativity? The study concludes that one of three high school students are willing to socialize with disabled peers outside of school. With a little courage and creativity this is surely a fertile seed with which to grow social integration.

I find the results encouraging.

But it is not simple. And Eli’s choice is not a reasonable choice.

When Choice is Not Choice

My first reaction was to ask myself, “Who in the school system can make a “choice” to attend school only with people exactly like them?” The answer is, no one.  No one, that is, except kids in special education. Afro-American girls cannot choose a public school that is exclusively for Afro-American girls.

The fact that we cling to self-contained classrooms does not tell us one thing about the students in them. It only tells us that unknown factors, such as isolation, have paralyzed our collective ability to move beyond fear of the unknown and plan inclusive placements where social acceptance is a priority and not an afterthought. What is missing here is not appropriate candidates for inclusive education. What is missing is creativity.

Why is it that kids with disabilities are the only ones offered the opportunity to opt out of the real world? If a non-disabled child is struggling with algebra we don’t send them a special school for math underachievers.

Inclusion is not easy. But it has been around for over thirty years and the time long ago came and went where schools and parents can honestly behave as if inclusion were a wheel that needed to be invented.  Inclusion is a model that works. Its benefits are well known. So why are we still acting like it is something so new and different that we just can’t figure out a way to make it work?

The celebrated case of Brown vs. the Board of Education rejected as unconstitutional, the idea of a “separate but equal” education for children of different races. The road to racially integrated education has not been easy. We have all put a lot of effort into learning how to do it. No matter how difficult it has been, no one has suggested the option of giving children the “choice” of opting out of racially integrated education. No one is calling for a return to segregation because of difficulties with inter-racial friendships. Why is special education different?

Uninformed Choice is Not Choice

I do not criticize other parents for educational decisions they make about their child. These are personal matters best left to the judgment of families. This is not a critique of the Lewis family, who appear to be highly skilled advocates, struggling to do what is best for their son. But they should never have been forced into this sham “choice.”

The bedrock principle of self-determination is choice. Implementation of self-determination is really a question of the best method to redress the historical absence of any kind of choice, for both children and adults with disabilities. Disability “services” have been created on a one-size-fits-all model, totally indifferent to choice. The paternalism of traditional service models does not allow for the possibility that someone with a disability would have either choice or the ability to exercise it. Fear of the unknown, in this case what people with disabilities would do with freedom if they had it, stopped the process in its tracks. We opted for safety over risk, and eternal childhood over the scary adventure of becoming an adult.

In our enlightened modern world “choice” has become the holy mantra of self-determination. Any flim-flam notion, dressed up as “choice,” is regarded as unchallengeable. In this mode of reactive thinking, we are compelled to honor “choice.”  The issue is simply tossed off onto an adolescent with a disability and, because it is his “choice,” we are, somehow, expected to bow down before it.

This may or may not be a good policy for adults with disabilities. But Eli is not an adult. He is a child. Just how informed can a fourteen year old be?

What would your reaction be if your fourteen-year-old daughter with Down syndrome came home and announced that she had made a “choice” to have a baby? Or, “chosen” to become a user of marijuana? Since these things are “choice,” are parents bound to accept them? Of course not.

Our whole culture is based on the belief that no fourteen year old can simply “choose” to reproduce or ruin their health with drug abuse. We recognize that childhood “choice” is an immature choice or, put another way, not an informed choice. And we override those choices everyday. We intervene, we prohibit, we monitor. What we don’t do is tacitly accept destructive, bad or illegal behavior because it is a “choice.” That is what parents do. Parents make choices for their children until the children become adults.

Is Inclusion a Dream?

“Inclusion,” said the late Marsha Forest, “is a battle cry, a parent’s cry, a child’s cry to be welcomed, embraced,

cherished, prized, loved as a gift, as a wonder, a treasure.” Is there anything more that a parent could want for their child, disabled or non-disabled, then to be welcomed into the world, embraced by family, friends and community, cherished, prized and loved?

Inclusion, as described by Marsha, seems the panacea of normalcy that so many of us wish for our child with a disability.  Inclusion ratifies our belief that our children are normal kids with important contributions to make to our world.

In the marathon game, that raising a child with a disability has become, there is, perhaps, nothing that parent advocates strive for more than community endorsement of their child’s place in the world. The first skill a parent needs is the ability to believe in their child and his or her capacity. Inclusion is a word we use to describe what is, in fact, a dream of normalcy. Normalcy may be unrealistic, and we know that, but we like to minimize differences and emphasize human similarity. The first gift

of inclusion is the gift of dreaming of a world where our children belong and matter.

            Dreaming is an essential part of advocacy. But inclusion must be more than a dream. A dream is imprecise. Inclusion is the opposite of exclusion. And exclusion is not what we want for our child, any child, or ourselves.

            Inclusion as Philosophy

. If we want a world of inclusion, independence and opportunity for our child with a disability we must develop our own philosophy of inclusion and learn to use it .An inclusive world is a familiar place to us. Most of us have not had the experience of labeling and exclusion and, when we think of those things in relation to our child, it gives up the creeps. And it should.

The great mathematician and philosopher, Bertrand Russell, said that the principle goal of teaching philosophy is “to teach

how to live without certainty and yet without being paralyzed by hesitation.” Much about how we will include our child in a normal world is unknown and cannot be known. Inclusion is both philosophy and art. And, like those things, it requires creativity both to achieve and to maintain.

An essential part of the creative process is hesitation – without it, divergent thinking is impossible (and inclusion is divergent thinking) – but we need to find a way to move through the hesitation and beyond it or we risk being paralyzed by the very uncertainty that makes creativity possible.

Like any philosophy, inclusion contains inherent contradictions and it is in the mastery of the contradictions that we avoid the paralysis that Russell warns of. We would prefer a world of certainty. We would like assurance that if we do A, B and C the result for our child will always be D. But neither life, nor philosophy, comes with a guarantee. It is uncertainty that gives us the gift of creativity. And without creativity, we are lost.

A Natural and Normal Part of Life

Disability has been around since the first human walked the earth. Having Down syndrome is normal. It is time we all accept that. But it seems to be one of the last things the culture will accept. People with disabilities may appear different. They may act different. Instead of accepting those facts as just another square in the quilt of life, we have focused on differences.

Why, more than a half-century after Brown, do we still maintain separate educational facilities for kids with disabilities?

Eli’s choice is really Eli’s dilemma. Given that we offer separate schools and classes, he must choose inclusion or separateness. That is a false choice. It should not be there for him to make.

But, we know that the choice is there and it is real. There are positive steps for social inclusion that could be tried in Eli’s inclusive high school. The National Down Syndrome Society maintains an excellent web site with suggestions about how to implement social inclusion with IEP goals. This is the kind of thing that we all need to know. But we also need to remember that we are living in an artificial world. Such things as social inclusion goals would not be necessary in a world that accepts difference and diversity. We cannot create that world by dreaming. We have to make it happen.

The philosophy of inclusion is just what Russell said it would be. It presents us with a world of uncertainty. Our job is to learn to live with unanswered questions and to travel untrodden paths.

The writer, and advice-giver, Cynthia Heimel, wrote, “When in doubt make a fool of yourself. There is a microscopically thin line between being brilliantly creative and acting like the most gigantic idiot on earth. So, what the hell, leap.”

Don’t be stopped in the pursuit of what you think is best. Believe in your child. Believe in your family, its history and its values.

Being a parent is not easy. We must balance our natural concern for our children’s immediate happiness with our own

responsibility to be good stewards of their childhood. There is no substitute for your judgment.

Eli made his choice. We  wish he and his family well and hope for the best.

At the same time, we do not dishonor Eli or his family, by recognizing that this “choice” should not have been presented in the first place.

We are all part of the human family, in all of its complexity, confusion and good intentions. Let’s start by believing that.

Let’s believe in our children.

 Separate but equal is a false choice. Let us work to create a world where acceptance is the norm and not the exception.

Disability will be a natural, normal and accepted part of the human condition when we all accept it without second glances or judgments. Only then will we get to make real choices and set aside for good those administrative conveniences and fears

that still plague our children. It’s time to move on.

Michael Bailey is the father of two teenage daughters. His 17-year-old, Eleanor, has Down syndrome.

He is a member of the Board of Directors of the National Disability Rights Network.

Mr. Bailey is author of “SPECIAL EDUCATION: A Families Guide to a Child’s Success,” which will be published in April, 2006.