The following is a letter composed amidst the trials and tribulations of IEP planning and meetings. While the letter was inspired by a discussion a parent had with their child's Special Ed Teacher, it is actually an OPEN LETTER to anyone who interacts with children with challenges. The feelings are deep, and had been gestating within the author for 8 years (since her daughter's birth).
The conversation which inspired the letter was one in which Jessica's teacher (of the past 4 years) referenced Jessica's level of "cognitive impairment".
VIOLETS and DAISIES
by Kay Drais
I know you hold a very deep and rich part of your heart open to all of the exception children that you laugh, cry, struggle and celebrate life with every day. Please do not construe this letter as personal criticism. I admire your commitment, tenacity and your love for the children you serve, and I have no doubt that you are a blessing in their lives. I write first, to be true to myself and my personal inspiration, and also because when you find something good in life, the only contribution available is to offer what one can, in the hopes that the good can grow ever more good.
When we talked on the phone, and you referred to "the level of cognitive impairment" of Jessica, I felt as though I had quite unexpectedly been washed away in a tidal wave of oblivion. I do not see Jessica as impaired. I see her as different than most of us in general terms, but different is not impaired. Synonyms for impaired are defective, damaged, ruined, incapacitated, mutilated -- synonyms for different are distinct, non-uniform, differing dissimilar, unusual, uncommon. I prefer to believe, and my heart very clearly tells me that my daughter is uncommon, not defective.
I guess I had been working under the misconception that you, like me, did not put much stock in such labeling, and in fact, avoided such frighteningly limiting notions as lenses through which to view children.
Once I finally groped my way though my incredulous shock, my first impulse was to snatch up Jessica and RUN -- run as far and as fast as possible away from Jessica's school, far and fast away from what I consider to be a spiritually primitive educational system, and far and fast away from the fears, judgments and cynicism of people who simply do not understand my daughter. If being in school for Jessica requires being destined to face preconceived notions of profound limitations on a daily basis, the quite simply, who needs it? I honestly believe she would be better off without it. Perhaps that is why she is so emphatically resistant to our efforts to "educate" her.
I quickly realized however, that running away is not the answer. For I would have to spend the rest of my life running from lack of understanding, and it is hard to change misunderstanding when one is clipping along at a fast and breathless sprint.
Instead, I ask you to please consider how deeply the images and concepts you hold of your children do, in fact, enter significantly into the equation of your relationship with them, and the natural outcome of that relationship.
Are you aware of the relatively new science of quantum physics? In the past 10 years, and ever more boldly, quantum physicists have been alerting the world to a fuller understanding of how profoundly the experimenter impacts the results of any experiment. In fact it is not possible for two people to perform exactly the same experiment and get exactly the same results. Futher, the same person cannot even repeat an experiment and get exactly the same results, despite exhausting efforts to ensure controlled environments, etc. The experimenter is affected by everything in his environment as well as all of his interpretations of it -- and all of *that* impacts the results of any activity or experiment he may participate in. We are all much more connected to our world, our experiences and one another than we have historically realized.
Jessica is not a mistake, she is a gift. Her greatest gift is that her apparent disabilities tend to highlight how we as individuals, communities and institutions tend to respond to that which we do not understand. Certainly it is comforting and convenient to label the unknown as inferior/impaired in one fashion or another, because then it can be neatly set aside and life as we know it can be gotten on with.
People with apparent disabilities stop us dead in our tracks. I know, because I was stopped dead in my tracks when I learned that Jessica was not-your-average newborn. However, I have come to understand that the way we respond to people who are different in any way, clearly reflects our own willingness to either expand our horizons, or to shrink back in fear. It is very clear to me now, that the manner in which we interface with people with apparent disabilities is far more reflective of our own personal capacities than those of the person we interface with.
Institutions (and our educational system is an invested institution) tend to rely on conformity for survival. Often the reliance on conformity insidiously transforms into a need which can unfortunately (and often unconsciously) becomes a necessity. Necessary conformity is quite a stifling concept, if you allow yourself to consider the full ramifications.
I want to state for the record (in bold font) that I do not consider any IQ testing or similar instruments designed to measure capacities and potential to be *absolutely irrelevant* information regarding any portrayal of who Jessica is, or any other child, for that matter. I will not be easily convinced that a society who has not yet learned to live harmoniously together on a daily basis has the capacity to develop any meaningful instrument of measure of human potential.
In basic terms, the IQ testing measures *recognizable* capacity to *adapt* to preconceived patterns as quickly as possible. What about imagination? What about spontaneity and creativity? What about personal integrity? To strive to conform or adapt to society as it functions today in general terms, would be to strive to learn to manipulate, live in fear, frustration, insensitivity and greed. I have no desire to adapt to that, and I am glad my daughter appears to have little interest as well.
SO WHAT DO I WANT? I want us to hold our judgments, interpretations and projections of each other lightly. I want all of us to be brave enough to trust that the beauty and goodness of each of us is innate and sufficient, just as we are. I want myself and others to be patient with and accepting of Jessica's relationship with this realm, and to look for what we share and *celebrate* that, and to gift one another with our uniquenesses. I want myself and others to grow beyond a need to insist that our own particular version of life on earth is the only valid one, simply because we have chosen to adapt to common means linguistically and methodologically.
As far as I am concerned, unless someone can feel and convey genuine acceptance of Jessica exactly as she is right now, there will be no platform with any integrity upon which to build meaningful experiences of growth and unfoldment within Jessica personally, or in relationship to her.
Indulge me for a moment, and imagine yourself to be a violet growing smack dab in the middle of a beautiful bed of daisies -- and all of your (short) life, the multitude of daisies surrounding you seem frustrated that you are different. They try endlessly, and to the best of their abilities to turn your into a daisy, despite the fact that you, while very similar in many ways, are also very different than the other flowers who share your life. Would it serve you to try to be a daisy when it is clearly true that you aren't one, and never will be? How would it feel when the well-intentioned daisies around you continually insist that you look and act more like a daisy than the violet that you truly are? And, have you ever picked a violet and suddenly found yourself wishing that it were a daisy instead? Wouldn't you be glad of its' violetness, and that be sufficient, or rather exquisite, in and of itself? Is it any different with people?
I imagine, dear teacher, your mind is now thinking, well, this world is predominantly of, for and by the daisies. And true, you have generously and with much self-sacrifice spent a good deal of your time patiently teaching the violet a few daisy tricks, so that she can function effectively in the daisy bed. After all, she is growing there. And my point is, that if she has to deny her essence as a violet, there is no value at all in learning daisy skills. If daisy skills, however are optional, and she can be accepted as the violet that she is, she will gracefully and sweetly unfold into the fullness of her beauty, warmed by the sun, and nurtured by the trust and open-heartedness of her surrounding daisies.
**Violets, beloved friend and teacher, are NOT impaired daisies.**
I thank you dear teacher, from the very essence my self, for your wondrous dedication to this fabulous bouquet of children you have welcomed into your heart.
End of letter. I sent copies to the principal, the teachers of Jessica's mainstreamed classes, and the Director of Special Ed for the District we live in...
As I wrote the letter and later made corrections before sending it, I realized that the letter was also to myself -- as Jessica's mother and friend. I want to *be* what I am asking for.