My son Charlie has the day off from school today. Such a change in his usual routine of Monday = school is never easy for Charlie, who prefers—indeed depends and relies on—routines to give him a sense that things are right in the world. Long weekends are, therefore, not something that we, or he, look forward to.
But I’m glad Charlie has the day off today, in honor of Martin Luther King, Jr., Day. In his old school district, where Charlie was in a self-contained autism classroom in a large public middle school, he did not get the day off. Raised in Oakland and Berkeley—one the home of the Black Panthers, the other of the Free Speech Movement, and much much else—I was appalled that our large central Jersey school district did not recognize MLKJ Day as a holiday. My son now attends a public center in which all the children are on the autism spectrum or have disabilities. And you can be sure to note that I was pleased to note that Charlie has the day off.
Charlie’s current academic curriculum focuses on pre-vocational and daily living skills. He doesn’t have classes in language arts, social studies, science. We’ve been trying to think how to explain MLKJ Day to him and one thing I am saying is that, it’s really because of the work of Dr. King that Charlie is able to go to school. That Charlie—a child who in a previous not-too-long-ago generation would not only have never set foot into a public school, but who would also have been institutionalized at a young and tender ager—has the right to a free and appropriate public education.
Autistic self-advocate Dora Raymaker has written about autistic rights, disability rights, and human rights.
While autism makes us different, autistic rights is really about those things we all need, autistic or not, disabled or not, minority or not: food and shelter, respect and love, and empowerment to live our own lives in freedom, happiness, and health.
I would only add that autistic rights and disability rights are civil rights. Individuals on the autism spectrum have, as Dora points out, been denied the right to: ethical treatment in science and research; equal opportunities in education; equal opportunities in employment; acceptable living conditions and access to support; fair treatment in the media; and inclusion in policy about autism. The issues of pressing concern to individuals on the spectrum are, Dora writes, “those faced by all severely marginalized populations.”
My son Charlie, and students with disabilities, are ensured a free and appropriate education under the Individuals with Disabilities Education Act. While the Americans with Disabilities Act is a civil rights law that prohibits discrimination on the basis of disability in employment, public services, and accommodations, it does not directly provide for the education of children with disabilities. Go here for an overview of the laws which preceded IDEA: I can’t say how much my son’s learning, not to mention his life, relies on this law. Charlie requires one-on-one teaching by teachers and therapists who are highly trained to understand and address his particular cognitive, sensory and other needs, as well as his challenges in communication. As I’ve noted, he is not studying the “usual” curriculum of “reading, writing and ‘rithmetic.” The hope is that—as with other students—he will able to get a job and live on his own (to the extent that he can) as a result of his education. I cannot say often enough how his life and ours are better and simply good because he is able to be taught, because there is a law specifying this right.
It’s not easy to teach Charlie. He, and students with many needs like him, require special services and staff. These require extra funding than are needed for teaching students without Individual Education Plans (IEPs). Also, due to his disability and his differences, public school districts too often find that providing all that a student with disabilities needs means that more resources are being allocated to a child who is not perhaps going to “succeed” in the ways that we tend to think of, such as in winning academic awards or on athletic teams, or by getting into highly-ranked colleges. For my son, “success” can mean making it through a school day without having any major “challenging behaviors” and being able to tell his teacher that he’s feeling anxious.
Charlie’s right to an education is no less than that of any child. Our efforts to get him that education have made my husband and I (both of us are college professors) again and again aware of what “education” really means and about why it is Charlie’s right to be educated, to live a fulfilling and meaningful life. This is not simply a dream that we have for Charlie, but a goal that we seek to make happen every day of our life with him.
I do think often of many of Dr. King’s words, if I may quote from “Letter from a Birmingham Jail“:
Injustice anywhere is a threat to justice everywhere. We are caught in an inescapable network of mutuality, tied in a single garment of destiny. Whatever affects one directly, affects all indirectly. Never again can we afford to live with the narrow, provincial “outside agitator” idea. Anyone who lives inside the United States can never be considered an outsider anywhere within its bounds.
I think about “why we can’t wait” to get Charlie that education (he is still young but growing up fast, and his mind is hungry; he needs to be taught, he wants to learn). I think about why our dream of Charlie learning as much as he can should not only be our hope, but that of our whole society, if our society means to do right and to be just towards all of its members, to each and every one of its citizens. Just last Friday, January 15th, a new law was passed in New Jersey where we live which expands the state’s antidiscrimination law so that “no one who has autism and related neurological disorders is denied access to libraries, restaurants, gyms, pools, theaters and other public places. It also guarantees equal access to housing and jobs.” All states in the US will one day, we hope, pass such a law.
So this is what we’re telling Charlie about why he does not have school today, this Monday, the 18th of January, 2010. He doesn’t have school today because it’s a day to think about, to remember, to honor the person who helped lead the way for those who are “different” to have a seat wherever they’d like on the bus; to have a place in school.
HAITI INFORMATION AND ACTIONS
Haiti’s reconstruction by Haitians living aboard For these noble goals, we ask that the government of the country in which we reside to task our pay check $10 per pay period for the next 50 years so that we can rebuild our dear Haiti.
Support the UN’s Response to Haiti Quake Victims United Nations Foundation
Honor UN Peacekeepers in Haiti Better World Campaign
Help Haiti’s Furry Ones! Cans4Pets.tk
Photo of Dr. Martin Luther King, Jr., Day March (2003) from the Seattlle Municipal Archives
Kristina Chew, Ph.D., is Associate Professor of Classics at Saint Peter's College in New Jersey. Since 2005, she has been blogging about autism, disabilities, and education, previously at Autism Vox and now at We Go With Him, a daily journal about life with her 12 1/2 year old son Charlie.