When I was asked to share with you this morning I must admit I was a little intimidated to address this particular audience, a group of people to whom I look up and admire for devoting their lives to what I believe is one of the greatest and lasting causes in the human record. So rather than pretend that I have something sage to share with you I will by manner of reflection attempt to distill the important lessons you’ve taught me over the past six years since a fateful meeting with Oregon’s executive director, Janice Richards at the National Alliance Meeting. Indeed what began as a simple “you’re from Oregon too” --by way of introduction--has grown into one of the most fulfilling journey’s of a lifetime. And since our theme for the weekend is on parables, “tales of surviving and thriving” I will in the tradition of natural storytelling speak of your leadership as a reflection of the examples, models and practices demonstrated to me in the years since.

Storytelling is a technique we have long used in our efforts to determine our true situation. We define ourselves by the stories we tell which usually come in one of two forms. There are the cautionary parables warning us of dangers or missed opportunities –such as red riding hood, a foreboding tale, which warns us off from strangers and “the boy who cried wolf.” On the other hand we have celebratory tales, ones in which we acknowledge something in the universe that is invaluable to human culture. The annual spring airing of the Wizard of Oz has taught children for nearly seven decades that through your own life’s journey you find at the end of the yellow brick road that which you have always dreamed you be was inside you all along. These defining stories, whether called parables, metaphors, court cases, paradigms or mythos ultimately determine what we are capable of experiencing or more exactly what we are capable of perceiving that we have experienced.

Storytelling is central to our movement of parent advocacy in special education. We have developed a beautiful tradition of sharing since our formative days of women sitting around a kitchen table pouring over lengthy government regulations, with children hollering in the background, a unique wisdom culture, rich with triumphs and travails. We have a common parlance and a set of instructions if you will, such as “Free and appropriate Education,” and “Least restrictive environment.” Indeed the Individuals with Disabilities Education Act marked the codification of our cultural revolution in bringing about what Temple Grandin calls the genesis of human balance. And at the slightest sign of an attack, change or disruption to the integrity of our emerging balance of equity we forge alliances, bring out the teddy bears on capital steps and clutter the halls of congress with our voices signing triumphantly…You will neither leave our children behind, separate, alone or forgotten. For as long as we breathe, move and shape---in our joined efforts we will birth a world of full inclusion!!!

Every conference I’ve ever attended having to do with special education whether it be about law and policy, medical breakthroughs, new interventions or service administration, the personal narratives of children with disabilities and their families were deliberately left in the discourse! How many times have you all listened to a dazzling research based discussion on some hot topic such as the intricacies of the nuerobiological basis of behaviors interacting with the environment and the potential use of this knowledge on the developing child until one mother bravely interrupts the forum--and thank G-d one always does—asking: How do I get my school district on board with this new knowledge?

-The existential reality of this question hangs uncomfortably in the air—

In the absence of a direct response by the presenter family members have linked with other families to do just that and to accomplish this many of you have become researchers, educators, politicians, lobbyists, practitioners, and physicians, in your own right, out of necessity, because you are families first—a transcendent law of family involvement which governs not only your personal actions as advocates, but its transcendence in special education has become and will forever remain the unquestionable law of the land

-And like a beacon the mother’s question charts our course…

At last the parent inside us all breathes, including the parent in the presenter…and in the liminal moment, you’re now an astrophysicist whose found in the monumental silence a space in the vast cosmos crucial to someone’s existence. Realizing how grand an expanse of possibilities are out there in the infinity of all there is you find yourself here--in this moment--ready to act. The interruption from the sophisticated lecture brought everyone’s attention to the fundamental and critical question posed:

What does any of this matter if no one beyond this room knows and is willing to act?

Families are by definition love in action and that is why we continue to implicate ourselves as citizens in every space of the social. We begin with making sure our children are in the classroom where one of the earliest cultural formations of the idea, that we belong and that there is a purpose beyond play is cemented. And in the halls of Congress where laws are passed that literally determine who shall live and who shall die, who will merely survive and who shall thrive.

We must be ever present in contemporary discussions of Reading First initiatives across the country to show the world that every child is a reader, a storyteller, a dreamer, and inventor. Our voices must resonate in the boardrooms of major corporations whose ethical choices can establish a sound basis for work and family fit, quality health insurance and a stable tax base guaranteeing vital community services. And we must not forget that institutes of higher education offer a goldmine of pre-service educators only too willing to value families and building on child strengths.

In reflecting further on the question of the impetuous attendee at the lecture, I believe leadership in this movement can be summed up in a quote of Annie Lamott's from Traveling Mercies.

“I had been my whole life a bell and never knew it until I was lifted and struck.”

Leaders speak of a world that is possible and speak into existence a world that resonates with the vision of others, whose bell is waiting to ring. In the moment of clarifying vision a new possibility becomes as tangible as he who has been lifted and struck. In the immutable laws governing the physics of the soul, if indeed such a law exists (but, this is after all, my parable) the moment when two or more individuals experience knowing that something is possible a shared world exists. And even if that feeling lasts for merely a moment that is often all it takes. The leader’s job is to keep that vision alive so that the people who are aligned with this vision are continually inspired and pushing the boundaries of their own perceived capabilities out of the mundane world into their visionary world.

And it is through storytelling that we imagine ourselves as leaders.

This Spring I had a rather unusual and by all means unplanned excursion in Denver Colorado, traveling rather frequently between Oklahoma City and Portland, I was on my way to Oklahoma and hadn’t been on board more than fifteen minutes when a gentleman had an medical emergency. The crew made an announcement on the intercom that they were in need of medical assistance. I tried in a most concealed manner to look down the aisle hoping a physician was on board and already assisting when I realized no one was coming to this man’s aid and the crew became increasingly distraught preparing to administer CPR. I got up walked down the aisle and quietly stated that I was a nurse and after much difficulty we positioned in the man in the aisle so we could begin resuscitation.

Here I must confess, I’m a nurse of the worst sort, I’ve never felt comfortable with needles and as evident by many patients they weren’t that comfortable either. Needless to say I changed careers.

After attending to this man I indicated that his chances of survival were greater if they turned the plane around, since we hadn’t been up that long. In addition to a heart attack he had a stroke and today there are miraculous blocking agents if infused during the first hour following the event can radically reduce the effects of a stroke. As we descended to PDX I was grateful to have been on that flight, optimistic for this fellow whose “story” I didn’t know, but I hoped he would recover well enough to reflect with his loved ones the miracle of survival and I would…still yet make my connection.

We embarked again for Denver and I was assured that I was booked on the next flight and in the scheme of things I would only be an hour late. In Colorado, things were a whole lot different, Denver was gearing up for the largest snow storm it would see in 93 years, but as luck would have it the weather came in 10 hours earlier and upon arriving it was quickly evident I was going nowhere fast. The last flight, my original flight had left one hour earlier. As the airlines were abandoning their positions at the gates someone said maybe flights would resume this weekend.

I got my resourceful nature in gear and by some twist of luck managed to meet up with someone who rented one of the remaining cars, and found someone who got through to a hotel on his cell phone who passed it over to me letting me book one of the last rooms. One of the fellows standing in line, to use a pay phone had recognized me from the earlier flight. I felt sorry for the chap so we took him along.

Getting out of the airport was quite an ordeal, six more hours in line, I wasn’t suitably dressed and G-d knows where my luggage was. We risked driving in a virtual white out to get to a hotel to have the comforts of a real bed, shower and access to a computer heaven forbid I missed work!

I practiced all the forms of new age acceptance I could muster. Realizing that the time, money and surrealism of the whole experience was trivial when weighed against a person’s life I wish I could say I was the picture of humility---in truth I would have been

happier to just have been able to go home. Three days later the airport opened and while I stood in line with four thousand others hoping against hope to get a seat on any flight, I looked around to find a sea of blankets, pillows and weary eyed folks whose exhaustion hung in the air. I walked across the concourse in search of coffee and noticed a man with Down syndrome leaning against the wall cradling his sleeping elderly mother in his arms.

Elie Wiesel winner of the Nobel Peace Prize said: “Everything becomes possible by the mere presence of someone who knows how to listen, to love and to give of himself.”

Please allow me to expand on this narrative of a caring ethic, which is at the heart of my parable. As a movement we denounce such notions of taking pity or having compassion when speaking of our children. We don’t let others speak of children with disabilities as if they carry a burden, save for the burden of a world that is limited in it’s ability to value human diversity. Instead we set out to “take care” of the concrete needs of a particular group of individuals in specific circumstances as the starting point for what needs to be done.

The movement in self determination teaches us that for all to be free to “take care” --that is to be both a giver and receiver of care in nurturing self, family and community—we must as the wonderful French philosopher Emmanuel Levinas suggests--afford children, educators and families the experiences of true face-to-face encounters with the perceived other.

My mother was the first person to introduce this concept to me by way of insight and direction. I was by every imaginable definition a difficult child. My parents adopted my brother and I in the 1960’s when background information was minimal and adoptive parents were psychologically prepared to accept you as a blank slate.

Well believe you me I was no blank slate.

If you remember report cards in elementary school had two sides. On one side were your academic grades and the other side your conduct. Each term the conduct side on my report card was a long row of “NS,” not satisfactory. The comment sections were packed. At first the grades on the left remained relatively high by comparison and indeed such a discrepancy today would set a whole series of alerts and actions into gear.

Eventually the academic grades began to regress towards the mean and my poor conduct was so distracting I could no longer focus in class, attend to details, instruction, or direction. I was drowning in a nuerochemically imbalanced stew and sinking fast!

My mother intuitively knew that failure in the classroom did not amount to a failed person and prodigiously sought alternative pathways for me to achieve milestones in personal development. Long before I would discover the notion of “building on child’s strengths" as a researcher and advocate, my mother demonstrated this principle in practice, by placing me in social contexts in which I had to be of service to others.

It was through one of my mother’s inspired “interventions” that I first encountered “the other.” I was twelve years old and the summer camp I had attended could no longer manage my behaviors. What might have been the most humiliating experience of my life was transmuted by opportunity into the most pivotal.

With a summer ahead and no scheduled plans to keep this twelve year old out of trouble my mother insisted that I volunteer at the Sunny Hill Children’s Center in Westchester, NY. Sunny Hill was started by a woman whose son had autism and was not permitted in the regular school system. In response she turned her home into a day school for other children and families facing the same challenge. Parents schlepped their children to her from all over the Tri state area. Her learning curve was exceptional and for more than forty years she provided a guaranteed, safe, and loving placement for children at minimal cost.

The staff consisted of what today we’d call Para educators or Teaching Assitants but they were as expert as could be in view of the paucious literature available on best and model practices. My first day I was given a list of antecedent behaviors to memorize and watch for and I was being groomed for what would be my life’s work. I was trained in observation, and eventually was permitted to assist in various activities. One of the children had a confounding disability of Hunter-Hurler syndrome, Chris who I remember vividly had the sweetest blue eyes and infectious smile, we would just sit with each other and smile. In those quiet moments neither one of us were disabled, disordered or “other” we were two children thrilled to be inventing ourselves in each other eyes. His life expectancy was no more than 12 the exact age I was and he was in rapid decline towards the end of my stay.

This face-to-face with love in action, a truly caring ethic seeded a resiliency in me that would eventually direct the course of my own life. I wish I could say that I was angelic after that summer, instead my mother had to keep coming up with those clever interventions, but here I am.

If we are to ask children not just once, but over time, again and again, to commit themselves to achievement in school, we must understand the ways in which their identify formation fundamentally shapes what they believe is possible in terms of their own life outcomes.

At the heart of successful transitions is the powerful effect that labeling has on the student in the course of her lifetime. The debate over the value of labels has raged for decades and will undoubtedly continue in the years ahead. Federal law requires that children with disabilities be identified but does not mandate the use of labels. When a child is labeled “disabled” there is an unavoidable stigma that can hurt the child’ self-esteem. Beyond this gross classification the unfortunate conundrum facing advocates, educators and students are that they are forced to live in the shadow of an historic social invention perpetuating negative identity formation.

Families and students that reject these classifications are placed in a classic double bind. On the one hand to advance the civil rights of all people of diverse needs the rejection of labels symbolizes a bold social action in “taking care” of the social emotional development of all children. On the other hand in order to have access to the resources and tools they need to care -- families and children must accept these labels to increase their chances of achievement-- hence a double bind.

I’d like to suggest that in direct partnership with disability leaders such as the Youth Leadership Council we develop a research agenda to determine:

q In their own words the extent too which students feel stigmatized, isolated and/or rejected by their peers without disability?

q If students perceive their disability as an academic and/or social liability?

q If students view their difference in powerful assertive terms?

q And most importantly the extent, which students perceive their school life as symbolic of the world in which they live and will grow in?

I believe that these sociological insights would inform a renewed commitment to establishing transition policies and services designed to bring a child out of dependency on a host of systems into a directed role in determining which resources in the community he wishes to engage in fulfillment of his own wishes for a rewarding and meaningful life.

I’m not advocating that we abandon the approach of identification, classification and intervention in the least rather I would like us to recognize that there is a tremendous amount of energy and frustration expended by families, educators and children having to mitigate this double bind in their daily lives. I am mindful of the encouraging breakthroughs in child science that challenge the prevailing assumptions of the past thirty years.

Take for example the research on the developing brain: Most of us were confirmed in our assumption that the first three years of life are crucial in establishing brain cell connections. But are understanding of how that development takes place is considerably more nuanced. The brain is a developing and resilient organ, not a machine, and the hardwiring of the brain extends well beyond the first three years and with the proper stimulation for a lifetime.

As science is only in its infancy in understanding the picture of the brain as a developing organ I’d like to suggest that we view special education in a similar light.

Less than 30 years ago, school officials could turn away any child they felt would be unable to benefit from public education. Children with disabilities who were denied access to school might receive some training in an institution or private setting, but many simply were not educated. The 1970’s revolution in parent advocacy brought to fore the IDEAs mandate for the least restrictive environment and in the intervening 30 years that directive still implies that a child should receive an education that places the least amount of restrictions of their own unique trajectory of development.

Families and educators are increasingly developing a community of shared wisdom and now most emphatically the voices of disabled people, representing the first generation of IDEA beneficiaries, are heard to challenge the effects of special schooling and social discrimination. This is in my mind one of the greatest accomplishments to date. To be witness to the first generation of students who attended public schooling for better or worse as result of IDEA and now have something to say about it will be of immeasurable benefit to the next generation.

I would like to see the co-intelligences of educators, families and former students conspire across the country to form statewide transition coalition placing youth leaders in critical roles. Such a coalition could establish a transition academy offering trainings related to education service provision, special education transition services, community and adult systems, and the needs of underserved populations.

As leaders in family advocacy I’d ask you to reflect on what families will need to know in twenty to thirty years? What will help their children receive the greatest level of quality education available? I realize that these questions sound somewhat like the work of a futuristic think-tank but I believe this is exactly what many of you have already done. And in answer you came up with a national network of PTI centers pioneering reform in special education moving children out of separate buildings and separate curriculums into general education settings, while teaching the world what it means to be families in action.

If I were a quilter this is what I’d make for you. I would render this movement as a patchwork with squares depicting women, fathers, and their children in all colors, shapes, sizes and combinations. Alternatively I’d mix in images of a copy machine in the corner of a local druggist. I’d have intermittent patches of kitchen tables with groups of women sitting around amongst their children with a ten-foot high pile of papers with a deadline on top! I’d have a smiling reference librarian whose time helping common citizens pour through blue books and grant registers never went unacknowledged. And I'd be sure to include a square symbolizing a hotel room full of grant reviewers combing through three hundred page applications. And I would call this quilt “A Nation of Families” and on the back I would inscribe this poem:

In the beautiful words of W.H. Auden:

Clear away from your heads the masses of impressive rubbish.

Rally the lost and trembling forces of the will.

Gather them up and let loose upon the Earth

‘Til they construct at last a human justice