Excerpts from a speech given by Janet Vohs, Federation staff member, and parent of Jessica Vohs, at Gala 2013, Celebrating Every Child -
I want to talk with you tonight about the incredible honor and privilege—not to mention thrilling adventure! — is has been for me to be part of the work of the Federation for Children with Special Needs for nearly 34 years. My daughter Jessica and I are who we are today largely because of the Federation.
Like many parents, 40 years ago when we learned that our children had significant disabilities, I was advised to institutionalize Jessica. Of course, I was hopelessly in love with her beyond anything I would have imagined. I knew that wasn’t going to happen. Yet I was very afraid of how we were going to make our way in a world that would put her “away” or view her as a tragedy.
Early Intervention did not exist, and the short preschool program was three towns away, not part of our community. But when Jessi turned 6, thanks to Ch. 766, she could attend a local public school half days-- a totally segregated room with just 5 or 6 kids with severe disabilities. Inside, I was ever fearful of what would happen to Jessica. I knew my love alone was not enough. I had to help create a wider world for Jess and really did not know where to begin.
As a single parent, I needed to find a job during her school hours. Luckily, the Federation found me, and I began my work there just as Jessica started school. I walked into the Federation a frustrated, fearful, clueless mom, passionately committed to my child. I found there an automatic sense of belonging. We were all in the same boat. There was no manual on how to do this. We had to go with our own truth in our own corner of the universe. For me that truth had to do, first, with belonging.
The Federation held and still holds a vision of belonging, a possibility of wholeness, for families no matter what their situation. This background of commonly shared difficulties, no matter what disability label our child had, shaped our relationships with each other and with the families we served. It also gave rise to a shared belief in the profound significance of what we were doing—persuading, forcing society to grant justice to its children. Simple justice, belonging, education, health care, community, empowerment -- all of these issues guided us and were foundational to the work. OUR individual struggles -- the nitty-gritty details of our daily lives, our children’s experiences, and how hard it was, these are what informed the policy work we did.
We asked ourselves and each other: What would it be like if things were different? Our questions led us to consider possibilities beyond what we could see. We thought about what the words we heard and used said about the people we cared about. For example, shifting from integration to inclusion deepened the sense of belonging we were aiming for, as did speaking of homes instead of slots, facilities, placements, residences, houses. We spoke about education and learning, not just coverage or care or training or therapy. Most important, we insisted on speaking of our children as children first.
Our Policy work unfolded out of possibility in the areas of: inclusion, transition, quality education, health care, and expanding the vision.
By stressing inclusion, we emphasized not just being there but being with, participating as a valued person. We fought for that. From the beginning, we articulated our goal to help bring about an overall shift toward a society that embraced the full spectrum of humanity. Today, the very first sentence of the federal special education law reads: Disability is a natural part of the human experience and in no way diminishes the right of individuals to participate in or contribute to society. Later, in 2004, Congress added this language, stressing that the law was amended so “that special education can become a service for such children rather than a place where such children are sent.”
Like other children, our kids grow up. In 1990, federal special education law was amended to require schools to assist students to transition from high school to the world of work and life in the community. In 1990, the adult world for people with severe disabilities was far more dismal than I had imagined. The best of what was visible was a sheltered workshop, perhaps supported employment. I was told that Jessica would never even be considered for a sheltered workshop. She was too disabled! She’d perhaps be eligible for some kind of custodial program and that was even a long shot! This NEW section of law required that a student’s vision for her life be included in the educational program and that educational services were to support that vision.
Our vision for quality education spurred us take part in the movement for general education reform to ensure that students with disabilities were included in these efforts. Thanks to education reform, by 2004, students with disabilities had to have access to the general curriculum. In the past, rather than learn to read and write, about history and science, our kids got therapy or “functional skills training.” Someone like Jessica could spend decades learning to button a jacket or zip a sweater or other “therapy.” The reformed law even required that our kids’ teachers be qualified to teach the subject matter they were teaching. We helped drive this agenda by writing the book All Kids Count on including students with disability in statewide tests like MCAS. This bright light on our children’s educational progress helped drive reform for them. Our book Every Single Student spelled out in detail how our kids could be part of the academic life of the school. Our book Literacy Resource Guide for Families and Educators put crucial new research on teaching reading to students with disabilities in the hands of educators and families across the country.
In the 70’s and 80’s similar kinds of transformation were occurring in health care through the Federation’s work with the federal Bureau of Maternal and Child Health. Our mantra was Family Centered Community Based Coordinated Care. We used this language to bring families and communities more powerfully into the scope of the medical world. We worked to redefine the meaning and application of this mantra throughout every aspect of health care. These 6 words also became law of the land for Title 5 Maternal and Child health care programs because of the work we did at the Federation and also because of the efforts of another pioneer parent, Julie Beckett out in Iowa.
In our work to ensure quality health care and education for all students, it became ever more evident that many families who did not have children with disabilities were still left out. Educationally and economically disadvantaged families—immigrant families, families of color, non-English speaking families—were and to a large degree are still left out. We took the knowledge and effective approaches toward parental empowerment that the Federation had crafted over the previous 25 years and tailored them to empower parents in economically and educationally disadvantaged families.
How did all of this happen? Parent empowerment. In its voluntary infancy, the Federation became the pilot project for a federally funded parent center in 1974. Federation Founder Martha Ziegler and a core of four other parent leaders across the country became the launching pad to make the possibility of parent-to-parent empowerment a reality nationwide. Since 1984 this network of parent centers is an established line item in the federal department of education budget, with over a hundred centers now in every state and territory. Martha Ziegler with her counterpart from the Ohio parent center actually typed the language for this part of the statute in U.S. senator Lowell Weicker’s office.
As wrap up: I would like to leave you with a call to action in these areas I’ve spoken about.
· The Issue of belonging will be with us forever. We need to keep paying attention to the meaning we attach to difference. We must remember that our folks with disabilities are, first and last, people like the rest of us, not simply individuals. We need to pay attention to who’s being excluded and find ways to include them.
· Help Give Voice for the voiceless. Jessica drove around with a motto on her wheelchair for years: “Not being able to speak isn’t the same as having nothing to say.” Although Jessica has benefitted from advances in communication technology, we still have a long way to go. There are also many others who have yet to find their voices for other reasons. We need to continue to reach out to disenfranchised families in disadvantaged communities. We need to listen harder and observe ever more closely and find more ways to help.
· Build Better connections to adult disability community and to adult service agencies. One of the most important things in Jessi’s life is being part of BCIL and ADAPT – a national activist organization of people with disabilities. These organizations are spearheading the campaign to defend the rights of people with disabilities to live freely in their communities. They were key to gaining accessible transportation and for Personal Care Assistants who are the lifeline for folks like Jessi who need considerable help and who abhor the thought of being institutionalized.
This is a story of what a vision of belonging can look like. As Jessica’s vision was realized, she did become a member of CitiYear, the first person with severe disabilities. This opened the door for her to go to College at Mass College of Art and the Museum School, and to develop herself as an artist at the Kaji Aso art studio where she studied intensively.
These successes would not have been possible without the Federation’s powerful and transformational leaders. I am forever honored and grateful to have played a part in this remarkable organization’s work and I thank each and every one of you who have been a part of Jessica’s and my journey.
- By Janet Vohs