"Rights remain theoretical until someone asserts them...It often requires patience, persuasiveness, resourcefulness and expert assistance. ..."
How could I begin to thank you for the support you extended to me over the past year and a half?
Because of your dedication to children's well-being in public schools, W_____ Schools are a better place for students to attend.
Before I spoke to you last year regarding my children's situation at school, I felt overwhelmed by school officials who were uncooperative about making the necessary life-saving changes that were needed for my sons to attend school safely. In my heart of hearts I knew that the conditions at school were morally reprehensible. There seemed to be an insurmountable gap between what was wrong and what needed to be done. I felt frustrated trying to convince our superintendent and school committee that children with chronic health conditions, like children with learning disabilities, are being discriminated against unless they are identified and provided necessary services.
Prior to our conversation (October, 1993), I had first telephoned the Massachusetts Department of Education and then the U.S. Department of Education-Office of Civil Rights seeking information that would assist me in advocating effectively on behalf of my children. My initial calls produced dead ends.
However, I was persistent and called repeatedly, believing that eventually I would find someone who could help me. Finally, I did reach a woman who informed me that perhaps the school district was in violation of some regulations but her information still remained non-specific and unsupportive.
As you may recall, it was through mutual friends of yours and mine that I initially contacted you. To say that I was "lucky" to know the right people is an understatement. It was not until I spoke with you and read your articles that I clearly understood the protection the federal laws offer to children with chronic health conditions. It was you who directed me to specific individuals at the Office for Civil Rights who were then able to provide additional materials. Unfortunately for those parents who must depend solely on the Department of Education for information, their materials were not as clearly written as the articles you sent to me.
Your articles, with stories of children and parents in similar circumstances and of specific examples and model policies in other schools, validated me and made it okay to envision a school system that is safe for all children. Having those examples not only encouraged me, but also helped W_____ school officials to look beyond the limits of their own district. I will forever be thankful to you, not only for your materials but also for your kindness and moral support.
I will never forget how vulnerable I felt when a letter to the editor, written by a former school committee member, suggested that it was my husband and I who were irresponsible and not the school district. After all, he suggested, there are other children in W_____ with far more "tragic" situations so we should stop complaining. Furthermore, the superintendent suggested that I may have deliberately endangered my son's life (by allowing my son to eat in the cafeteria) for some self-serving purpose.
As you may recall, at the last meeting we attended together, the superintendent stated that, by advocating for better health services and raising questions about safety and liability, we were making the situation worse. He claimed that we were frightening faculty. I am glad that you were there to witness his statements and help me place them in the proper perspective.
Without question, you made the difference between success and failure. Although it is repetitive, I want to again say "thank you." I had no illusions that it would be easy when I first confronted W_____'s bureaucratic system but I had no ideas it would mean being subjected to personal abuse.
My personal experience convinces me that school officials have enormous emotional power over parents because they represent the same authority figures that parents themselves were subject to as children. Like most parents I assumed that the people managing the schools cared about children simply because their place of employment houses children. I learned that this was a naive assumption. In spite of the fact that school officials were the ones putting my children at risk and denying them their educational rights, they tried to make me feel wrong or guilty because I was questioning school policies. Your moral support helped me withstand the superintendent's resentment and hostility.
Perhaps it goes without saying, but having someone available to provide moral support was essential. Alone, without your advice and encouragement, I would never have gotten the results we have achieved together.
One of the many aspects of your guidance that I especially appreciated was your ability to present a steadfast informed position without alienating those officials we needed to work with. This ability is particularly important to parents who may not feel entitled to having their children's health needs met while at school. It is easy for officials to silence parents with suggestions that their children are a burden on the school or that meeting their child's needs somehow detracts from the school's obligation to "normal" children. For me, placing parents in the false position of choosing between community interests and their primary obligation to their own children creates a chilling atmosphere of intolerance.
This school year we have a lot to be proud of. It will be a better year not only for my sons, but for hundreds of W_____'s students. Today, students with chronic health conditions have Individual Health Management Plans. W_____ has hired a part-time health coordinator to oversee health education and, most importantly, added two part-time nursing positions to our three full-time nursing staff. Teachers enjoy a partnership with school nurses which enables them to better anticipate the needs of children with health needs. Together, principals, teachers, specialists, cafeteria workers and administrative personnel are trained in a variety of preventative and emergency procedures to ensure that a knowledgeable person will always be there for children in a crisis. Substitute teachers are better informed and trained than has been true in the past. We are truly on the road to recovery!
Another accomplishment is that many teachers are now including activities and discussions that improve the understanding of people with hidden disabilities. A number of parents have thanked me for being so outspoken about my children's health conditions. They believe their children have benefited from open discussions about disabilities and are "better people" for having the opportunity to learn that through differences everyone gains knowledge, understanding and social improvement.
For many adults and children in our community, the word "handicap" no longer simply means people in wheelchairs but also conditions that cannot necessarily be seen. W_____ students are certainly more understanding that people with disabilities are not educational exhibits to be brought out of the shadows during Handicap Awareness Week but individuals deserving both consideration and respect everyday. I am positive that by raising awareness of students with chronic health conditions and other hidden handicaps in our schools we are creating a foundation that educates adults as well as children that any discrimination diminishes us all.
It has been my pleasure to be associated with you and your commitment to improving the quality of education for children with chronic health conditions. The world is indeed a better place because of your efforts.
PG, 1994, W____ (MA)
The world endures solely by virtue of the breath of school children. (Talmud)