On Sept. 21, my developmentally disabled son and I were the focus of a Times article regarding the contract dispute between the Orange County Department of Education and Durham Transportation Co. Representing 800 handicapped children, we hoped to draw public attention to the personal impact of this transportation crisis.
In many ways, my son, his brother, who is also disabled, and I epitomize the most frequently ignored minority in the U.S. today: the handicapped, a minority whose population is increasing.
In addition to managing our disability and maneuvering in a world designed by and for the able, we are in a constant battle to demand and ensure our rights. Although some agencies exist to help us, most of them are understaffed, underfunded and virtually useless.
Fortunately, organizations such as the Developmental Disabilities Board, Area XI, do advocate for and support the rights of the handicapped. But these agencies can only help insofar as handicapped families are made aware of their existence and the agencies are made aware of the families’ problems.
In the handicapped family, an aggressive, informed parent who is willing to battle unendingly is the disabled child’s only hope for achieving equality among his handicapped and non-handicapped peers.
Many parents simply cannot go the distance. The bureaucracies beat them down, and the system wears them out.
The extra care and attention their fragile child needs can become overwhelming, sometimes at the expense of their own health. Divorce is a predicted outcome of this strain. Full-time employment and full-time care providing are nearly mutually exclusive. I lost my last full-time job because I had missed too much work during the 6 weeks my son was hospitalized in a critical care unit and my other son was at home with the chicken pox.
For 19 years, I have been in combat with various governmental, educational, medical and social service agencies whose weapons of rhetoric and red tape have almost overpowered my armor of love and determination. Throughout the struggles, I have been asked countless times how I manage. My answer is simple: I must.
I cannot name a single political or religious leader in this country who is championing the rights of the handicapped. The disregard for the disabled is pervasive throughout the system and trickles down to all levels.
In 1984, the Reagan Administration asked an appeals court to overturn a U.S. District Court ruling that the mentally retarded have a federal right to “a reasonable opportunity to acquire and maintain those life skills necessary to cope as effectively as their capacities permit.” Reagan’s Administration argued that that right did not apply to this handicapped group.
During California’s last legislative session, both Democratic and Republican legislators held special education as a political hostage. As they jockeyed for power on their opposing opinions of other, unrelated educational programs, California’s elected officials bounced at least five bills containing special education legislation back and forth between houses, before SB 2059 was passed finally on the last session day. The governor then waited until his last day to sign SB 2059 into law.
At the local level is Supt. Robert Peterson of the County Department of Education. Luxuriating in his educational empire, surrounded by a cadre of superfluous “yes men,” Peterson has run a $50-million budget in deficit for the past 4 years.
Although he had been alerted repeatedly for 10 months to an impending bus driver shortage on the contract that covered transportation of the 800 handicapped students served by his department, Peterson chose to ignore the warnings and allowed the situation to escalate into chaos. Early on, he refused to meet and negotiate with Durham. After it was too late, he still failed to inform parents promptly of the problem.
While handicapped children were left without transportation and their parents were rearranging their entire lives to get them to and from school, Peterson let the conflict drag on.
The interim transportation alternatives provided by Peterson’s department are unreliable and possibly unsafe. After I witnessed the wheelchair lift, with my son on it, lower at an angle and then bolt suddenly at midpoint, I knew the department’s transportation problem had not been settled.
Now, the saddest thought is the one of all of those handicapped children riding around out there in buses that are breaking down, or who are confined to those buses for 1 1/2 hours or more, or who are being delivered to the wrong school site.
Maybe their parents don’t know. Maybe their parents don’t know what to do about it. Maybe their parents have given up trying to fight the system.
Let me speak for them. We must begin somewhere to remove from power those who would stand in our way and replace them with those who will open doors for us. Such an opportunity is being presented to us in Measure A, which gives voters the choice of electing or appointing the Orange County superintendent of schools.
By virtue of his elected position, Peterson has been able to perpetuate his career of mismanaging Orange County’s educational system. Between elections he answers to no one, including the elected Board of Education trustees. Peterson continues to hold his post, because the only way to remove him is through an expensive, complicated political process of recall--or through the voter decision on Nov. 8 to change his office from elected to appointed. The decision is obvious: A is for Appointed.
Something is seriously wrong with a system and a society that makes the right to life, liberty and the pursuit of happiness so difficult for the handicapped minority to acquire. When I look into my children’s eyes, I see a trusting hope that this will change. So I keep fighting--because I must.