It may be better than when we were kids..  but that is not saying much.

This report was written in 1989, back when some of us were kids.  I was a teenager.

Back in the day when children like Rowan were often sent to an institution, instead of a school, without a chance to show their talents.  Back in the day when doctors encouraged new parents to just leave their child at the hospital.. they won’t have much of a life anyway.. and refused to treat the children of those parents who didn’t listen.

This report makes me so sad. Though the discrimination in Rowan’s story looked starkly different from that in Baby Doe’s story, the underlying reasons remain very similar.

Rowan’s death was entrenched in many of the same problems so many years later.. all revolving around a doctor’s unwillingness to put forth effort in seeing the worth of his life.

The section on the Limitations of Hospital Self-Policing (pg 10) was especially poignant to me. Their statement of the clear problem that “Ethics committees are largely insular bodies, sharing the mores and limitations of the local hospital” so many years ago, is at times too much to absorb.  Such a strong recommendation from the US Commission of Civil Rights that “Outside oversight is needed” so many years ago, yet our society continues to turn a blind eye toward the self-policing of hospitals and other medical institutions.  As they did in the case of Rowan’s death.

The report can be viewed here:

or here:

US commission on civil rights report

As the commission pointed out: “Treatment decisions.. to children with disabilities cannot be viewed in isolation.  Together with the discrimination in (a variety of contexts) these decisions may be viewed in the context of longstanding attitudes and practices toward people with disabilities” (pg 23)

On other words: If we, as a society, don’t expect quality care for all of our children, then who is really to blame?