The recent debacle in the United States senate over the vote to support the United Nations Bill of Rights for Children [1] brought to mind a theme that I believe has remained constant for many years: children with disabilities continue to be treated as second class citizens in many societies. These children have to fight for what is given without question to other nondisabled children. In some cases, battles are won. In other cases, they are lost. What is true is that it is a series of battles in a long war that never ends. These battles are waged on three fronts. First, they take place in the legislative branch of our government. The debacle noted above is an example of that. Secondly, the battles are joined by parents and advocates of these children. These are usually waged in courts of law as well as the thousands of schools and classrooms where parents interact with teachers and administrators. Third, the battles are waged by teachers and other educators who work with these students.
In the USA, we have specific laws [Individuals with Disabilities Education Act (IDEA) and the Rehabilitation Act of 1973] that have been passed by congress to guarantee equity. These laws seek to ‘level the playing field’ by establishing the right to a free and appropriate public education in the least restrictive environment. As a result of the IDEA, schools are required to construct and implement individual education plans (IEP) for each student identified as having a disability. Schools are also required to construct individualized plans under the auspices of the 1973 Rehabilitation Act for children whose disabilities deleteriously impact their performance in school. Sadly, my experience in US schools tells me that for many children these rights continue to be abrogated. I have seen groups of children with disabilities denied lunch with non-disabled children simply because they have the diagnostic label of ‘conduct disordered’. I have seen children expelled from school for behaviors that other non-disabled children exhibit and receive no consequence. I have seen disabled children’s individual education plans ignored. I have seen middle school children go for an entire school year without receiving the special education services to which they are entitled. My students observe the same thing, and ask “how can this be?”, “how can this happen”? My experience in Mexico as a part of my Fulbright work affirms the cross cultural nature of this state of affairs. While there are federal laws in Mexico that guarantee the right to an education for ALL children [2], the sad fact is that for many with the most severe disabilities public education is not an option. It is common knowledge while that may be ‘the law’ it is no guarantee that children with disabilities are served. It is also true in Mexico that while some more noticeable disabilities are addressed in law, the hidden disabilities such as learning disabilities are not recognized.
The stories of parents are particularly compelling. In my work in a non-governmental center for children with severe, profound, and multiple disabilities in Mexico, I am in contact with the parents of these children every day. They will tell you of schools that refuse admittance because there are no programs, no teachers, no space – in short no resources. They will tell you of the battles they fight every day on behalf of their children. They can attest to the exhaustion they feel at the end of every day just to fight for what a non-disabled child gets at no cost. And tomorrow looks to be just the same. For them it is a long war indeed.
In my role as both a teacher and as a teacher-educator, like many other educators in special education I’ve been working to support children with disabilities for many years. I began this work in 1973. Over the ensuing years I’ve held jobs in state institutions, public schools, and private centers that serve these children. I’ve been a consultant to many different school districts, I’ve worked in American schools in Germany and currently am working as a Fulbright scholar in Mexico. I am also a professor at Pacific Lutheran University in Tacoma Washington and my work there focuses on training future teachers to work effectively with children with different types of disabilities. When I discuss the rights to which these children are entitled with my students (the right to a free and appropriate public education, the right to due process to name two of them) I note that while in many countries we’ve come a long way in ensuring those rights, we are still engaged in battles to guarantee those rights are not abrogated. In other countries, the right to a free and appropriate education may be ‘the law’ but it is not the reality. All of us as teachers are continually fighting for the rights to which our students are entitled – it comes with the territory of being a special education teacher.
The costs to our children are enormous. I’ve had more conversations than I care to recount with children whose self-image has been battered by years of “you’re different”’, “you’re not good enough”’, “you’re a failure”. I’ve taught these children in deplorable places and conditions. I remember my first classroom in 1973 was a glorified closet in a public school that had been closed. While other, ‘normal’ children were taught in a newly constructed school, students in my program (a program for children with autism) were relegated to an abandoned school building. Lest you think this is ‘ancient history’, I can take you today to a K-12 program in a US school district that serves children with behavior and emotional disabilities that is housed in – you guessed it – a school that has been shuttered because it is deemed to be an inadequate facility. While in this building, these children have no access to ‘normal peers’. They have no opportunities to see, talk to, nor play with their non-disabled peers. They take special transportation to school. The message they get is “you’re different”, “you’re not good enough”. They define themselves in those terms and it becomes a self-fulfilling prophecy for them. It is a cycle from which they cannot escape. The long term effects of this are profound.
From an economic perspective, the cost to our societies is a critical factor. It is an accepted fact in public health circles that preventative efforts are much more economical than intervention at the tertiary level. It takes a fraction of the cost to intervene early. That is why we have programs to inoculate children from many diseases. That is why we have routine screenings for vision and hearing. In many school districts early identification and service delivery for children with ‘hidden’ disabilities such as specific learning disabilities or emotional/behavioral disabilities does not occur. We wait for children to become greatly discrepant from their peers before intervening. We intervene many times – if at all in some cases – very late and thus increase the cost and decrease the chances of minimizing the disability. Many educators see this, and certainly many parents see and feel it as well.
For children with disabilities and their families it is indeed a long war. A battle to ensure physical therapy services that is won today will be replaced by another battle over another service tomorrow. The continual battle to equip teachers with skills to effectively work with children who are ‘different’ will be replaced by the battle over the development of skills and knowledge that school leaders must have to create communities of learning where every child is supported and valued. And while these battles continue, those that suffer the most are these children and their families.
No matter what country you’re in, where you are raised, where you live or work, this theme plays out. I see it in the USA and I see it in Mexico. It is no doubt true in other countries as well. This war will continue. Ensuring equity and fairness for all our children is a goal worth going into battle for. We will never achieve these things without demanding them and battling for them. To quote Peter McLaren, the noted critical theorist, “Teachers and students need to realize that justice does not already exist because laws exist. Justice needs to be continually created, constantly struggled for” [3].
Gregory J. Williams
Notes
1. The New York Times, December 4, 2012 -: "Dole Appears, but G.O.P. Rejects a Disabilities Treaty".
2. Santibañez, L., Vernez G., P Razquin, (2005) Education in Mexico: Challenges and Opportunities, RAND Corporation.
3. McLaren, Peter. Life in schools: an introduction to critical pedagogy in the foundations of education. 2nd ed. New York: Longman, 1994.
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