Rowan

Rowan listening to music at the Children’s museum

I have spent a lot of time learning about discrimination lately, and here is what I have learned.  You can slap someone in the face with it, and they can argue it away.  Talking about it is just never going to be as straight-forward as: Here’s the 2004 study which shows why it was completely negligent for Rowan’s doctors to give him anesthesia for a diagnostic procedure, and why they were  completely fraudulent when they claimed to be ‘experts’ in regard to Williams Syndrome.  (see Summary – Report to the Medical Board)

Knowing that even that obvious evidence didn’t result in Rowan’s doctors being held accountable, why bother? It’s not because I have any desire to use that word next to my beautiful son’s name.  In fact, I have an urge to vomit every time I think of its truth. We talk about it because the truth about our son matters, regardless of the consequence.  So, here goes:

There are two types of discrimination: blatant and subtle.

In Rowan’s case, there was one instance of blatant discrimination:
1.  Rowan was denied an accommodation due to his high risk of death under general anesthesia.

This one isn’t just a case of simple discrimination but directly lead to Rowan’s death.   This is akin to purposely depriving a person who was rhesus negative, rhesus negative blood during a transfusion.  The doctors who decided that Rowan was a low risk candidate for medical sedation under anesthesia did more then prescribe the wrong medication, they completely ignored the research and Rowan’s medical needs.

In Rowan’s case, we believe there were also many instances of subtle discrimination.  Subtle discrimination, by its very nature, is hidden, but that does not mean that its existence cannot have dire consequence:

1.  Rowan was labeled uncooperative.  The doctor could have given Rowan this label for 3 reasons:

Was Rowan given this label because he had Williams Syndrome? In this case, the doctor saw Rowan as a label, rather that a whole person who was worth their whole attention, thus denying him necessary medical accommodations (avoidance of anesthesia).
Was Rowan given this label because he was two years old, and the doctor thinks all children are uncooperative?  He was being treated at a hospital that specializes in pediatric care.  The concept of labeling all two year-old children uncooperative enough to require sedation or general anesthesia for an ultrasound (electrocardiogram) is insane.

Did the doctor truly believe that Rowan was uncooperative?  Rowan’s history allows a reasonable person to see that this reasoning has no basis.  (See – Rowan is uncooperative?}

2.  The anesthesiologist, despite our open concern, assured us that she was not concerned. Was she as careful with Rowan as she would have been with a child who didn’t have Williams Syndrome? (see informed consent?)

3.  The hospital stated, after Rowan died that Rowan died from crying.  If Rowan didn’t have Williams Syndrome would they have used this reasoning?  If Rowan didn’t have Williams Syndrome, would the CA Department of Health have allowed this explanation for a child that was gassed to death, without interventions or monitoring, during an outpatient diagnostic procedure? (see news from the CDPH)

4.  The hospital didn’t treat me, Rowan’s mother, as a reasonable advocate for my child. I carried a notebook,  made phone calls, talked to more than one doctor, wrote statements.  I reasoned, and then shouted and cried.  But my voice was ignored.  Why?   (see I.SAID.NO.)

5.  The hospital, before his death, labeled Rowan as ‘healthy’. After his death, they labeled Rowan as ‘very sick’.  Were they counting on society not to notice the difference between delayed speech and physical illness?  Most of us only go to the hospital when we are ill.   Children who have special needs go to the hospital for many tests solely so a doctor can write up a phenotype of the child for future reference (ruling out or counting in the many components of the spectrum of characteristics that may or may not define a specific special need)..  If Rowan didn’t have a label, would he have undergone numerous tests without symptoms?  If Rowan didn’t have Williams Syndrome, would society have accepted the reasoning that he was “very sick”?

When considering discrimination, it is very important to always take into account the pattern and duration of these discriminatory practices. Our society often labels a single instance of subtle discrimination as “mild”, and not worthy of our attention.  But these instances have serious consequences when they are prolonged and part of a larger pattern of other discriminatory actions. In Rowan’s case, these patterns of “subtle” discrimination provided the framework and justification for the blatant act of discrimination that directly killed him.

In the end, it doesn’t matter if one, or two, or a few of these acts of subtle discrimination are argued or not believed.  It only took one act of bigotry to kill Rowan and that was failure to see him as a person with a known intolerance for general anesthesia.  It shouldn’t take more than one act for people to be outraged.