One family’s expression of gratitude and hope

Guest commentary by Rud Turnbull

Now that the nation’s economy is in a recession and government funding of disability programs is problematic, and in light of the comments during the recent presidential campaigns about community organizing and disability policy, it seems appropriate to offer an historical perspective about families, their members with a disability, private action, and public policy.

First, the future of any child with a disability born in this decade is promising largely because of the private action –- the community organizing — that parents of children with disabilities began more than 50 years ago.

Second, it is inconceivable that parents and people with disabilities will ever find respite from creating new or better services and advocating for progressive public policy.  To discount that fact is to disrespect, in the most profound of ways, the efforts of advocates past, present, and future.

I know that to be so because our son Jay has intellectual disability, autism, and bi-polar disorder, and because my wife Ann and I have been community organizers for all of his 41 years.

Had we not joined with others to create special education services, alternatives to institutions, places of gainful employment, and opportunities for recreation and leisure, he would have faced either permanent institutional placement or a life in our home, isolated and idle.  He would have been no different than other children with disabilities.

Like other parents, we had no choice but to organize our communities, to advocate and build capacity at the local and state levels, and to take our case to Congress as advocates for parent-directed organizations and to contribute to amicus curiae (friend of the court) briefs in two cases that the Supreme Court decided.

Like Ann and me, other parents were more than stimulants to community altruism.

Parents successfully sued state education agencies to secure their children’s admission to school. They then persuaded Congress to enact the first federal special education law (the Individuals with Disabilities Education Act).   They were the vanguard opposing President Reagan’s efforts to de-regulate special education.

They led the movement to reform, close down, and prevent placements in horrific institutions.  They pushed Congress to authorize the attorney general to intervene in lawsuits against states that violated the civil rights of institutionalized individuals with disabilities.

Parents were the moving force behind an amendment to the Medicaid statute authorizing federal assistance to improve state institutions.  In time, they persuaded Congress to shift the funds from institutional care to home- and community-based services.

They successfully advocated for federal law authorizing states to support individuals with severe disabilities to work in regular worksites for regular wages.

They declared their opposition to the withholding or withdrawing of life-saving treatment from newborns with disabilities, and they were directly responsible for the federal law that presumes in favor of treating these babies.

Parents opposed physical, chemical, and electronic restraints that too often had been used for administrative convenience and without evidence of their treatment efficacy.  They marshaled their resources to create federal support for research that offers a different, more positive approach to shaping behavior.

Parents helped persuade the Supreme Court to hold that capital punishment of people with intellectual disability violates the Constitution.  They advocated for diversion from the criminal justice system so that their sons and daughters could be treated humanely.

They succeeded in securing special-needs adoption and foster care law and practice.  They secured federal law authorizing family support.

Parents were powerful advocates for the Americans with Disabilities Act and are leading efforts to reform that law to overturn adverse decisions of the Supreme Court.

When any parent of a child with a disability looks toward the future, that same parent should heed three lessons from history.

First, private action –- call it community organizing if you will — has been directly responsible for the policies, practices, and the positive public attitudes that make it possible for today’s parents to look confidently to the future.

Second, bi-partisanship has been the hallmark of progressive disability policy. No political party has any special claim to the past or the future.

Third, whenever and wherever people not personally affected by disability have organized their communities, especially for underserved residents, they have benefited families and individuals who are affected by disability.  That is so because there is a powerful correlation between disability on the one hand and poverty, single-parent status, and ethnicity on the other.

We have been creating services and policy for 41 years; that’s how old our son is. In the normal course of events, we will predecease him.  I understand all about hope for the future; fear of the future; and about the valor and grit it takes to create a life for him, and for our two daughters.

When we acted for our son, we acted on behalf of others with disabilities and their families. When we advocated for them, we sought results for him and ourselves.  Private action for progressive policy has been a mutual responsibility.

In this time of profound change in economics and public leadership, we express gratitude to the advocates who came before us, recommit ourselves to our reliable allies, and undertake, once again, the obligation of advocacy, hoping that, someday soon, we and other parents will have far less of it to do.

_______

Rud Turnbull is a Distinguished Professor in special education and life span studies, and co-founder and co-director of the Beach Center on Disability at the University of Kansas. Contact him at: Rud@ku.edu.

This entry was posted on Saturday, December 20th, 2008 at 7:10 am and is filed under advocacy, families, history, law, NOT2BEMISSED, parents. You can follow any responses to this entry through the RSS 2.0 feed. You can leave a response, or trackback from your own site.