People thought to be 'vegetables' can be rehabilitated

March 27, 2005

Spectrum/Paul Maguire

In 1987, as a professor at Adelphi University on Long Island, I focused my research and teaching on people with severe and profound disabilities, including individuals with cognitive challenges.

The noted reporter Geraldo Rivera had just released an exposé on the horrors of the effects of institutionalization on people with severe and profound disabilities.

Many adults with severe and profound cognitive abilities, recently released from Long Island institutions, attended an adult therapy clinic I'd developed on campus.

In nine months, Adelphi faculty, staff and students witnessed many individuals labeled "vegetables" "unlearn" bizarre, learned institutional behaviors.

Further, through the supports provided by the clinic, they demonstrated enhanced learning of skills that reflect many indicators of healthy human development, including language acquisition, motor-skill learning and social skill development.

At the same time, a group of physicians in New York City developed a quality-of-life "formula" that included, in part, weighted measures of select components of the three "indicators" above, but excluded the perspectives of immediate and extended family members.

This formula was eventually deemed inappropriate due largely, in part, to the exclusion of family and community input and to the limited input considered in its development (physicians-only).

We value "community" when an individual's soul and her potential for enhanced learning are maximized through the provision of appropriate therapeutic and learning supports.

Therapy, primarily neurological interventions - autonomic nervous system - may include providing opportunities for individuals to develop activities of daily living, such as integration of reflexes and rudimentary skills, including swallowing, postural control, motor development, pre-language behaviors, etc.

Educational or learning supports, primarily cognitive interventions - central nervous system - may include motor-skill learning, including fine (eye control) and gross (mobility) motor, advanced language acquisition, social-skill learning, etc.

Typically, we develop and integrate our primary ANS behaviors from birth to about 5 years of age. CNS functioning emerges in the early years, too, and begins to become dominant at about age 5. Many times, CNS skill development and learning is enhanced by breaking skills down into smaller sub-skills or tasks.

Terri may be primarily functioning in ANS mode. Depending on the degree and type of brain damage, an individual may function solely at the reflexive and rudimentary stages of development, if the cerebellum and motor cortex are seriously impacted.

With anoxia or depletion of oxygen to the brain, both brain hemispheres can be affected. If this is the case with Terri, then she is probably displaying behaviors common to infants. For example, face recognition, pre-language and postural control behaviors demonstrated by Terri are common among infants from birth to 6 months.

When provided appropriate experiences, however, individuals with brain injury may display further development as a function of "opportunity."

At present, Terri has not been provided opportunities through therapy or education. Do we put infants to death who have primary caregivers and display the same level of neurological development as Terri? No.

Terri Schaivo has been denied the supports and opportunities needed to reintegrate and develop ANS and CNS functions typically afforded infants as a matter of course (i.e. motor, speech-language, social)! Would a loving community or primary caregiver deny nutritional support to an infant displaying similar behaviors? No!

So, learning and further neurological development are probable for many people with severe and profound cognitive abilities, including brain injury - just at a slower rate and when appropriate technical and/or personnel supports are provided.

People with brain injury are best "defined" by how they are included and actively engaged in the cultures, environments and communities within which they live, not solely by their perceived, individual level of functioning.

The dilemma in the Terri Schiavo case is more a challenge to define "community" and "humanity," than a measure of Terri's worthiness for life. In the late '80s, the "formula for life" and the New York City physicians who developed it in the absence of family were rejected by the community.

Maybe we should accept Terri, as she, along with her mom and dad, have demonstrated that life has quality when love is present. This is the true measure.

Are we, as a community, worthy of Terri?

Paul Maguire, PhD, of Palmer, is an associate professor at UAA and coordinator of the Alaska Family and School Health Enhancement Group.