One...two...three...four...five...six taps. Sharisa painstakingly pressed each key with her fragile finger. The extraordinary effort it took to type one word was not wasted on her audience of 150-plus education administrators, special education directors, agency liaisons and parents. One more push gave the word a robotic voice pronouncing, "Genius." And, of course, she was right. No other word could satisfactorily explain how Sharisa Joy Kochman, profoundly autistic, totally non-verbal, epileptic, with severe apraxia and otherwise multipally "labeled", was able to overcome the incalculable odds and survive, no, thrive into a meaningful existence. After eleven years of complete silence and "living death", to use her words, Sharisa returned to a world she vacated inexplicably to autism at two years of age with the help of communication assistance.
I sat there with the other conference attendees, riveted by Sharisa's story. Her crooked body seemed strained in the chair at the front of the room where she sat head down, expressionless, making no eye contact with the group during the two-hour presentation. In her early years of public education, she had been withdrawn, behaviorally erratic, and non-communicative. She aptly describes those elementary school years as "Bead Stringing 101." Teachers and specialists administering the usual battery of tests based on verbal responses and observed behavior, dismissed her learning potential utterly, recommending she be institutionalized. If it hadn't been for a grad student who needed subjects for her research paper on a new-fangled idea for facilitated communication... if one of those subjects hadn't dropped out leaving an opening for eleven-year-old Sharisa, perhaps that's how the story would have ended. Blessedly, it was the end of just the first part of her life, and the beginning of her real story, which she calls "My Life as a Zero, My Life as a Hero. "In a short documentary that she wrote and produced when she was in college in New York , we witnessed her ability to express herself with facilitated communication. This much-maligned assistive communication system requires the presence of a trusted "facilitator" who helps the user laboriously type her end of the conversation, in this case one finger at a time. In the beginning, Sharisa needed to rest her arm on her facilitator's arm while he positioned her finger and followed her lead to each key. Any reasonable person would admit to a degree of skepticism here -- how could we know for sure the communication was not being prompted by a sympathetic facilitator? Certainly this was the angle the media chose to exploit in the early 90's when facilitated communication rose with bright promise into the public awareness, and fell out of favor just as quickly. A shooting star story... Sharisa remembers that time well and credits the controversy with her resulting determination to become an independent typist. It was the only way to extinguish the doubts. She has gained typing independence and the credibility she sought -- just ask the political science club over which she presides, the honor society of which she is a member, or her classmates at the University of Denver where she double majors in the psychological sciences. The accolades don't end there, they go all the way up to President Clinton who honored her at a special reception in Washington DC .
So at this conference when someone asked Sharisa to explain her remarkable accomplishments, especially given the lack of eleven years of effective learning, what other response could she make in her inimitably succinct style except "genius"? There is no doubt, and the bare fact of it left many in the room wondering how our educational system could be so flawed as to have recommended throwing this wonderful mind away. Indeed, how many have we thrown away? Is it still happening, and how can we make sure it never happens again? This brings me to the point of my story. The point is communication. Our laws and entire educational system are completely and inherently flawed by a lack of understanding of the essential human right to communication, and how to accommodate for the fact that some people communicate differently. Sharisa Kochman's story exemplifies this dramatically, but except for the name and a few other changes, the story is the same one every day for many students who are deaf or hard of hearing. Moreover, the very laws designed to ensure their "free and appropriate public education" often routinely discriminate against individuals who communicate differently. The need for full access to communication is often 1) placed below the priority of misguided intentions to create an LRE--Least restrictive environment, 2) compromised by low expectations, and 3) buried under a bureaucracy of administrative reasons, i.e., lack of funds, under trained teachers, inappropriate tests, etc... When the right to communicate isn't understood in a context of high expectations, available technology, the unique language needs of the student, and essential staff proficiency in the communication mode of the student, the outcome is a compromised life.
We've seen the dismal statistics for our kids: a third grade reading level among high school graduates, higher drop-out rates, higher rates of academic and social failure, significantly fewer attending colleges and universities, higher unemployment or under-employment. In a recent study, (the Colorado Individual Performance Profile/CIPP), it was discovered that students who are deaf or hard of hearing are an average of three-years behind their hearing peers (Colo. Dept. of Ed. 11/00). This is simply not acceptable, but if we keep doing what we're doing, we're going to keep getting what we're getting out of public education. Nothing short of a complete reform that emphasizes a communications-based LRE as "language rich environment" will improve the quality of education for students with deafness or hearing loss. In a language rich environment, the first question to be answered is "how do we make sure we're communicating effectively and that he's getting all the information?" The answer to that question will include a foundational acceptance of the uniqueness of the student's language or communication mode, and what supports are appropriate for it. It will not include "dumbing down" to a lower language level, but new approaches to bringing the bar back up to grade level and raising the expectations for performance. To the extent that we don't fully know what it means to build a system based on communication, let's set our compass on that goal and go find out. In a communications-based system, the four metro area high schoolers--one with a cochlear implant, two who use CASE (Conceptually Accurate Signed English), and one who uses ASL (American Sign Language) -- who presently share one overwhelmed interpreter who openly admits to the impossibility of her task, all have access supports that are appropriate to the distinct differences in their communication modes and languages. We'll know we're in a system that's based on communication when the language of the law goes beyond encouraging IEP teams to "Have a conversation" about the communication needs of each student -- and mandates actions that describe how full access will be assured.
You don't have to look very far to find a good example of how dysfunctional this dynamic gets when "least restrictive environment" goes into the professional machine and comes out looking like a worse-case communication scenario for a deaf child. Here's an example of this on-going issue. Parent Brian Smith was told by Part C's Inter-Agency Coordinating Council (Part C/ICC -- the administrative body overseeing special needs services for the birth to three population) that the least restrictive, or most natural environment for his then two-year old son (profoundly deaf and strictly an ASL user) was a heterogeneous early-intervention program with "typical" (read: hearing) children. The instructor, while trained in early intervention, did not have a specialization in deafness and didn't sign. More specifically, Brian's been told that his program of choice for his son--a unique congregation of deaf toddlers using ASL who receive direct instruction from a early-intervention teacher who communicates with them in ASL--is likely to lose its funding because that setting does not fit the ICC's understanding of a "natural environment." Apparently, by this definition, a deaf child unable to communicate directly with his teacher or peers, without access to all the communication in his educational environment, is a child who is enjoying the benefits of a least restricted environment because of the wonderful exposure to "natural environments (that) are natural or normal for the child's age peers who have no disabilities." (34 CFR 303.18 of IDEA) What priorities and values rationalize that belief? The insensitivity is incredible. In this "one-size-fits-all" model, the Smith family has to prove that such an environment is "unnatural" for their child even though the law says just the opposite. Tom Patton of Early Childhood Connections (Part C) at Colorado 's Department of Education believes that the strength of law stands behind this interpretation, and he further clarifies "therefore, the provision of services in natural environments is not just a guiding principle or tenet, but also a requirement of law." But Part C of special education law also requires that a child's IFSP (Individual Family Service Plan) team should not place an undo burden of justification as to why that child would not receive services in a natural environment. This dichotomy leaves everybody scrambling for attorneys while the isolated toddler pays the price. When our toddlers turn age three and enter Part B of the law, the crisis continues. The tensions that exist between "least restrictive environment" and IDEA's requirement to "consider the communication needs of the child" result in a program-driven agenda. But Part B of the law clearly requires services that reflect a thoughtful, communications-driven plan "in the case of the child who is deaf or hard of hearing, consider the child's language and communication needs, opportunities for direct communications with peers and professional personnel in the child's language and communication mode." (300.346 (2) (iv) There are surely kids who are deaf or hard of hearing for whom the general classroom presents the natural environment sought in that student's IEP, so this isn't propaganda for self-contained environments or deaf residential schools. The point, again, is communication. How does a program look when it is communication-driven? What does it look like when hearing and deaf students have equal access to all the communication at school? The example of Brian Smith's son is pretty representative of the dilemma for sign language communicators. But this dismissal of the right to communication compromises education for oral deaf/hard of hearing communicators as well. The company-line on least restrictive environment could deem an appropriate placement for a fourteen year old student with a new cochlear implant right in the middle of ninth grade algebra, even with her "newborn" ears that don't recognize what they're hearing. And the proficiency of her teachers could be viewed as appropriate since they speak English. The unique needs for her auditory rehabilitation will be handled by the sign language interpreter somehow. I don't know what law supports the grouping of differently-communicating deaf/hh students to economize on interpreters, so that the aforementioned example must stand on its own merits as the definitive work of a non-communications-based system. Lacking any priority around communication needs, the law as it's being interpreted and implemented, can unfortunately be part of the problem, not part of the solution for our children. And there are those who refuse to recognize the problem, but even they cannot deny the statistics that prove the weakness of their position.
There is no reasonable or acceptable solution except to demand a communication-based system of education for all students, even if it means changing the law. Sharisa's experience stems from the same lack of consideration for this most fundamental human right. I use her story in an effort to reach those who think they know all there is to know about communication needs. I hope this different example of the problem touches a new place... past the callus of an old idea of what communication means for the deaf and hard of hearing. A communication-based system will improve the educational experience of many students with disabilities but for a student who is deaf or hard of hearing, it is imperative. "A deaf or hard of hearing child is, to some degree, without hearing. And yet the term "disabled" may be a misnomer. That same child is fully capable of developing language --spoken or manual-- and becoming a complete person. A communication difference is not the same as a communication disability." ( Lawrence Siegel, National Deaf Education Project 2000) Parents and many gifted educators and administrators have been forced to maintain a system that is a clear failure for a majority of students who are deaf and hard of hearing. If we couldn't live with it, and wanted to do something about it, we had to start looking for an attorney, and some professionals had to start looking for a new job. So now let's all get on the same team and unite our efforts to make a difference. The proof that our system and laws lack the assurance of communication access lives in the statistics, and feeds off the apathy and ignorance of those who would hide behind the status quo. Hands & Voices urges parents and professionals alike to join "the movement for improvement" with your intentions, your presence, your calls and letters. Write to us, email us parentadvocate@handsandvoices.org or call us (866-422-0422) with your ideas and your commitment. Take a stand so our kids won't fall short of the education they deserve...that is their basic right.
Ms. Seaver is the mother of three children- her oldest son is profoundly deaf. She is also the former Executive Director of Hands & Voices.
Copyright 2001 Leeanne Seaver for Hands & Voices
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