Today, the expectations of individuals with special needs are radically different from those of previous generations. They plan to participate in community life to the fullest extent possible, based upon their individual capabilities. And this attitude is mirrored by many family members. A growing self-advocacy movement stresses the intention of individuals with disabilities to construct lives answering to their personal needs and preferences, which may differ from what others envision for them.
Self-advocacy is as pertinent to non-verbal individuals with severe cognitive disabilities as it is to those with Asperger’s. For some, this means choosing to have a career and live independently. For others it may mean being consulted on diet, dress and social activities. In some cases, assistive technology, such as voice synthesizers or computers can facilitate communication. In other cases, family and professional caregivers can observe non-verbal cues in order to interpret wishes.
Here in St. Louis, Missouri, I have noted resistance to teaching self-advocacy within the special education system, despite demands from parents. Self-advocacy is so important to the building of self-confidence and assertiveness that it should be included in every child’s IEP (Individualized Education Plan). It should be central to the transition planning intended to prepare teenagers for adulthood.
Individuals with disabilities are often critical of the paternalistic attitudes of educators, the legal and medical establishments, and government officials. Part of the problem is that the public often has unreasonably low expectations of those with special needs. Many self-advocates have strong, informed opinions concerning government benefits, transportation options and the stereotypes that continue to challenge them daily. It’s presumptuous to assume that decisions affecting their lives should be made without including their perspectives.
I fear that a great conflict is emerging, given the current budget discussions at all levels of government. Hard won social services that have been designed to equip individuals with special needs for self-directed lives are being cut back. The U.S. government recently reported that, since the late nineties, the number of children and teens with developmental disabilities alone has jumped by 17 percent. As these young people enter adulthood, they will increasingly demand their right to self-determination. What will it say about us as a society if we do not equip this generation with the educational tools and social services necessary to achieve their birthright?