Archives for category: medical negligence

..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:
https://www.law.umaryland.edu/marshall/usccr/documents/cr12m462_A.pdf

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?

Also, the current necessity to address Special Needs Discrimination in Healthcare

Today the news brings a new tear.

Today, my news-feed is crowded with rainbows, telling me that gay lives matter. For that I am thankful.

Today, my news-feed is crowded with pictures of the confederate flag coming down, telling me that black lives matter. For that I am thankful.

Today, my news-feed is crowded with women, being acknowledged for wonderful feats. For that I am thankful.

Today, once again, I received bad news.

Today, From the ACLU: “We have concluded that the ACLU will not be able to assist you. This decision reflects our own limited resources, and in no way reflects on the worthiness of your case.”

Today, once again, I learned that not all lives matter.

These groups fought for generations, and centuries, to be treated with liberty and justice.  And today, each of these groups, and many others, still struggle.

But those who are labeled with ‘Special Needs’ are far behind the rest.

Today’s news is disheartening, to say the least.  The irony that the ACLU stood with the CA Children’s Hospital Association in opposition to legislation that would have allowed CA parents the resources to seek justice for their children killed in CA hospitals – yet lack the resources themselves to speak out against these horrific injustices – points to the insanity that underlies the ongoing struggle for liberty and justice. (see Proposition 46)

But today’s news doesn’t really matter.

For me, external validation by our justice system is not, and was never, necessary. Rowan is making an impact, and will continue to make an impact toward the liberty and justice for others that he did not receive in life or in death.

My little kiddo accomplished a whole lot in two short years. And I will always carry him in my heart with an immense amount of pride. This bump in the road will not deter us as we continue to share Rowan’s joy, and the importance of his life, with many.

I just wish that I could be doing it with him by my side.