The frustration..

Just the other day, I received an email from a parent, saying how she wished there was an available list of precautions, that parents could present, when anesthesia was being considered for a person with Williams Syndrome.  There is a list of precautions, and it has been available since 2004, nearly a decade before Rowan was killed.

The 2004 protocol for use of anesthesia in patients with Williams Syndrome is listed here: in our Report to the California Medical Board

Reading this note, I also learned that the main WS support group in the United States is still under-publicizing the risk (despite research like this: Research from Australia in much of the rest of the world) due to fear of “liability.”

After reading this, I was left with a wide range of emotions.  I felt overwhelming sadness, that our message (and that of others) has not been heard.  I felt anger, toward the hospitals and the WS leaders in the US, for what, at this point, could only be a conscious effort to withhold information from individuals with William’s Syndrome and their caretakers.  I felt devastation, that Rowan is not here to show his own worth to those who are ignorant.  I felt immense grief, for the horrific death of my beautiful son, and the inconceivable knowledge that the silence surrounding it continues to prevent his death from helping others.   And I felt alone, not part of any community.  Instead, an outsider – whose status as bereft, frustrated, and “just a mother” looking for blame – prevents me from finding a place, or being heard – just like before.

And the hope..

I also received an email that told a story.  The story goes like this:

A man looked at Facebook, and saw our petition. That man showed his wife, and she went to our website. They read our story, and cried, and they understood.  They understood every part of our story, from the medical negligence, to the special needs discrimination, to the importance of my “No”.

The woman is a person who asked herself, “What can I do?”, and bravely decided to do something.

This woman happens to be visiting the Washington DC next week, and she is taking our story with her.

She doing what she can.  Maybe she won’t be able to do anything, but she will try. She will try to get it into the next person’s hand. She will try to play her part.  And maybe, we will reach one more person, who will in turn, reach one more.

To that person who is the friend-of-a-friend-who-knows-the-man, to the man who showed his wife, to the wife who is going to Washington, I am thankful.

I have seen a wonderful example of how each small part matters, each piece adds up to a bigger piece.   And someday, all of those pieces could add up to a whole.  I have seen how a simple card, or a simple share, can make a big difference.

And I have seen how, through the frustration, there is a glimmer of hope.

On its way to Washington DC:  Rowan’s Informational Page Final

 

Rowan's first Thanksgiving

Thanksgiving 2011

Whenever I visit Rowan’s website, I am surprised to see that it still has visitors, everyday. Visitors that Rowan didn’t get the chance to meet, and that didn’t get the chance to meet him.
Today I am thankful for the people that spoke up for Rowan. Today I am thankful for the people who want to learn.
Today I am thankful forthe people who care.
Today I am thankful for those who stop, in the midst of their own holidays, to think about others. To turn toward, instead of away from, those who are struggling with grief, with discrimination, with war, with hunger, with too many other struggles to list.
This year, I have gotten to meet and know so many of these people, and for that, I am thankful.

Thank you

I just finished reading Ellen Wiseman’s novel “What She Left Behind”, a fictional novel based in a historical setting.

Despite my loss and my grief, I have been an avid reader since childhood.  Like many, the focus of my booklists has changed along with the events of my life.  Once having searched for novels that were uplifting, I have noticed a definite shift since Rowan was killed.  I have found myself searching more for novels that help me understand the world around me; that discuss topics which are difficult and are often hidden beneath society’s need to only discuss what feels good; that tell stories which give me a little bit of hope.

In Wiseman’s novel I found all three, but it was the historical facts behind her novel that brought me to tears, and brought me to the realization that: It could have been worse.

  • I am bereft at the loss of my child, but I have not been committed to an insane asylum for life because of my grief (I may have been less than a century ago)
  • My daughter may hear untrue statements about her brother in the playground, but she does not have to walk by US Eugenics posters claiming that people like her brother are a burden to society. (She may have less than a century ago)
  • My son may have been gassed to death as a result of discrimination, but he was not subject to intentional euthanasia because of genetic attributes considered unfit by others (He may have been less than a century ago)
  • I may have only had two years with my son, but I was able to give birth to him and bring him home and keep wonderful memories (I may not have a few decades ago)
  • My daughter’s grief might not be accepted in society, but there are safe places where she can grieve as a child (there was not a few decades ago)
  • Few people may have listened to our story or heard its message, but I have the freedom to tell it in on the internet where anyone who wants to can find it (I would not have a few decades ago)

So really, seen in the light of what could have been, I am pretty fortunate.  I am still here to live my life and support my daughter, and my son had the chance to know my love.

My love for both my son and my daughter will never quiet.  And I will continue to tell our story, despite a world that often ignores my voice or labels me as crazy.  I will continue to speak until I am old and my voice raspy, the whole time thankful that my voice is not hidden behind the dark walls of Willard Asylum.

And the whole time knowing that It could have been worse is not enough..

Because better than this is not enough for my son:

https://upload.wikimedia.org/wikipedia/en/e/e3/United_States_eugenics_advocacy_poster.jpg

United States Eugenics Poster, 1926, Source:  https://upload.wikimedia.org/wikipedia/en/e/e3/United_States_eugenics_advocacy_poster.jpg

To learn more about the history of Eugenics in United States Science and Medicine, visit: http://historynewsnetwork.org/article/1796 or read Edwin Black’s “War Against the Weak: Eugenics and America’s Campaign to Create a Master Race”

Rowan, in the waiting room, just before he is killed

Rowan, in the waiting room, just before he is killed

I just heard this report about 30 minutes ago when driving and had to pull off the road I was so angry and upset. So – finally, here it is; almost EXACTLY what we have been saying about how discrimination led directly to Rowan being killed under the care of doctors at Rady Children’s Hospital.

This is a very well researched and in depth report from NPR’s California Report into the serious consequences of unconscious bias and discrimination in medicine. We have shouted exactly the same message as loud as we can, but have been ignored by nearly all medical professionals, most other people and especially the media, including San Diego’s NPR station (Rowan’s mother contacted NPR six times over the past year).

I agree that this story should be newsworthy, but why did NPR leave Special Needs Discrimination out of their report? Why was Rowan’s story (who was killed by an almost identical method of discrimination) ignored, while this story was highlighted?

Rowan and those with special needs and disabilities are just not deemed newsworthy … despite suffering exactly the same stereotyping and discrimination as other minority groups. They are just …….. invisible.  Well, they aren’t invisible to me, and they certainly shouldn’t be to society.

If you choose to read this report, and are a person who has decided to ignore Rowan’s story, I hope you consider what YOUR biases are. To say you don’t have any unconscious biases is to ignore the problem that this report describes in detail, providing concrete research and examples from both doctors and patients to back it up.

Discrimination in healthcare was real for Rowan, and it was the direct cause of his death. Rowan’s life mattered. Everything that happened to those interviewed for this report happened to Rowan. For the most part they were lucky and survived. He did not and the world is a lesser place without him.

http://ww2.kqed.org/stateofhealth/2015/08/03/doctors-struggle-with-unconscious-bias-same-as-police/

To learn more about Rowan’s story please visit here

Rowan’s mom recently put out a request across Facebook to all of the healthcare practitioners and medical researchers who have linked to us on social media, but have yet to comment on Rowan’s death. She asked them one direct question about the discussion of discrimination in Rowan’s death versus the recent discussions of death related to racial discrimination by police officers  –“Why does the world pay attention to one, and not the other? What is the difference?”

This question stimulated an active and public conversation, but of those participating, only ONE was a medical professional who chose to reply publicly. The silence from those in the medical and bio-medical community has been and continues to be deafening.

It is important, especially for those of us who work in medicine, to speak up publicly so that others can hear YOUR arguments, MY arguments, OTHERS arguments and come to their own informed conclusions. This is not about winning a debate or convincing the other party that you are right and they are wrong. Without an open conversation that clearly shows what everyone involved really thinks, it is impossible for change to occur. Nothing healthy grows in the dark, and as we have said previously, the consequences of silence are profound.

Recently we were fortunate to have a healthcare professional share his opposing views with us privately. He expressed a common viewpoint in medicine today, as well as a common societal viewpoint about what constitutes discrimination. Viewpoints I believe are critically important to talk openly about.

Coming away from our conversation, it was clear to me that there is a widespread misunderstanding of what really defines discrimination in healthcare.

At the core of his opposing argument was the belief and acknowledgement that the modern practice of medicine is very generalized, and has flaws, but that everyone is treated equally.  That everyone should receive the best care possible and doesn’t is a very real but completely separate problem and does not relate to the existence of discrimination, be it blatant or subtle, within a flawed system.

The explicit flaw of this argument is based on the false assumption that there was no conscious or subconscious intent to do harm based on Rowan’s diagnosis of Williams Syndrome. Instead he was treated equally, as a good provider should do for everyone.

But, the reality is that Rowan needed to be treated as an individual who was different, but equal. Rowan required simple accommodations to keep him safe and alive because of his unique needs. This is true for all children with special needs. Drugs, procedures and even environments that are safe for typically developing children have been proven to be harmful and potentially fatal to children who are physiologically different as a result of a different genetic make-up. Rowan was different.. and therefore could not safely be treated the same as other children.

Instead, the doctors refused to acknowledge that Rowan had different needs, and denied basic accommodations for Rowan, which led to his death.

The best example to illustrate why that lack of accommodation was clearly discriminatory comes from our school system.  In order for a child with special needs to have the same educational opportunities, certain accommodations must be made.  Most children can be treated basically the same in the classroom and end up with a comparable education.  However, if a child with special needs is treated the same way and those accommodations are NOT provided, due either to overt prejudice or systematic failures, their quality of education is significantly lower. That is discrimination. This is not just my opinion. This definition of discrimination in education against those with special needs has been consistently upheld by the US Supreme Court, in cases such as Mills Vs Board of Education.

This is exactly why acknowledging that Rowan had WS, but going ahead and treating him the same as other children anyway, despite a year long battle from his parents demanding those accommodations, is discriminatory.

Rowan should have been valued just as highly and as equally, but should never have been treated the same as all other children. He should have been given specialized care and consideration, because his needs were very different from a typical child. This is the very essence of “Different, but Equal”.

One established definition of institutionalized discrimination is:

Discrimination that disproportionately affects specific groups or individuals, which has been incorporated into the structures, processes and procedures of organizations, either because of prejudice or because of failure to take into account the particular needs of different social groups”.

Rowan’s doctors failed to take into account his “particular needs” at nearly every step in his care, and children like Rowan are “disproportionately affected” by the negative consequences of “equal” treatment, regardless of their age.

So, for Rowan, and for many others like him, the argument that the modern practice of medicine is very generalized but that everyone is treated equally can in fact make an effective case that Rowan’s death was a consequence of discriminatory practices.

(Everything discussed in this post also only addresses one part of the discrimination in Rowan’s story, in which we believe that Rowan was also not treated as equal: this can be found discussed further here)

I know that many will still have opposing views after reading this. I hope you will share your arguments just as publicly as we will.  I invite you to do so below.

3 doctors Don't see, don't speak and don't hear anything

Rowan’s life and death tells a story, but this conversation is about much more than Rowan.  It is about all of the other wonderful children that are still here, and the families who love them with all their hearts.  Just as we will always love Rowan.

..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.

Special Needs Discrimination in Healthcare is real, and every ounce of me wishes it wasn’t.  My heart sinks a little more each time I find an article like this one, verifying the reality of our story:

“One in four participants said they had been encouraged by a medical professional to abort, and many received inadequate information and little compassion.”

http://www.washingtonpost.com/posteverything/wp/2015/06/16/down-syndrome-screening-isnt-about-public-health-its-about-eliminating-a-group-of-people/?tid=pm_opinions_pop_b

It makes me realize that the importance of this conversation is all the more real:

Rady’s Birth Defect Program

But then, I read on to the comments section. And I saw the hate. And I realized a harsh truth.

That I have been naïve.

I read words like “burden to society”; “they might be cute when they are young,” but..; and more that I can’t write, but I hope you read.

And I realized. This blood test isn’t anything new. It is just a different, more efficient, way to do what our society has been doing for years. And this author isn’t actually asking parents (to-be) to stop aborting their special needs children. Instead, she is asking us to be honest.  Honest about how we want the leaders of our society to view the worth of those with special needs.

And hundreds of commenters rose to her request. Honesty they gave her. The honesty of hate, for those they deem worthless, or trying to take something from them.

And, after all this time, I realized. I was naïve. I thought the silence was perhaps discomfort, or wanting to believe doctors can’t fail, or fear of conflict, or something.. anything.. else.

What I didn’t realize was that the silence is hate. The view of my own loved and cherished son as worth less. Or even despised. Or, at best, maybe the silence was just an act of condoning the hate.

I don’t have a word to describe how much this truth hurts. I have spent much of the past 24 hours crying, no sobbing, at the idea of this truth.

But I appreciate the author for asking the question. I appreciate the audience for answering. For taking the opportunity to speak the unspoken truth of how our society views those who don’t meet our ‘expectations’. Because the knowledge, as painful as it is, is better than the silence.

And in this one article, I am thankful that the author and the commenters answered our plea: “Let’s talk about it”

And I remain, thankful for the few..

photo(69)

“It was real and true” (by Rowan’s 6 year old sister) – This is the truth of what the silence did

My daughter at kindergarten

My daughter at kindergarten

Today, I’m going to brag.  That’s right.  I’m going to tell you all the ways that my kid is smarter than your kid.

Gasp.  “Oh, no, you aren’t.”

Oh, yes, I am.

As we were brushing our teeth this morning, my daughter said “Mommy, the kids in room 18 need extra help because they aren’t as smart as us.”

And then, I spent the morning thinking about what the word “smart” means.  I even looked it up in the dictionary, which told me that smart is “having or showing quick intelligence or ready mental capability”.

And thinking about that definition left me wanting to shout about how smart my kid is.

By the age of two..

My kid understood two languages.

My kid spoke one language more fluently than I did, and was quickly learning the second.

My kid had an uncanny ability to recognize the face of someone we had only met once before (while I, embarrassingly, faltered).

My kid understood, and practiced, empathy at a level that I have rarely seen in other children or adults.

My kid had an ability to make animals at ease in a way that I, as a college-educated animal biologist, had never seen.

My kid understood the danger of fire, and tried to blow out every flame and hot object in every room we entered.

My kid knew how to share, and saw its joy.

My kid readily engaged with a new teachers for over a half-hour without my intervention.

My kid could use actual words to ask for almost everything needed throughout the day, from shoes in the morning to a book before bedtime.

My kid easily adapted to the ways of life in three different countries.

My kid knew how to operate a tricycle, go on a bike ride, build a sandcastle, jump on a trampoline, and safely ride in a kayak.

My kid had the ability to make even the grumpiest of plane passengers, shoppers, workers, and everyone else we met smile their biggest smile.

And perhaps most importantly, My kid easily functioned in, and welcomed, a world full of people who were nothing like him.

The kid that I’m writing about wouldn’t have been the one in the photo above.  He wouldn’t have been in the advanced class with his sister, or the one who rode a bike or tackled the monkey bars earlier than all the others.

My kid may have been the kid in room 18, and my kid would have been smart.

Returning back to the morning of brushing teeth.  We sacrificed being on time for school to have a conversation about what “smart” really means.  We explained that being “smart” had little to do with just learning to read, or do multiplication, sooner than others.  My fingers were crossed, in hopes that my daughter can unlearn what she learned in kindergarten. In hopes that I can make my daughter a little smarter, without her brother here to teach her this lesson with such ease.

My proud kid

My proud (and smart) kid

Thinking of the importance of semantics this morning.

For example, the overuse of the word “mistake” if your name starts with “Dr”. I have a 6-year-old. When she does something wrong, I think of the root cause of her action before determining whether it was a “mistake” or something she should get in trouble for. Observing other parents, I think that’s pretty common.

Ego is not a “mistake”. Prejudice and discrimination are not “mistakes”. They just aren’t. And when we use the word “mistake” to describe what happens to victims of ego, prejudice, and discrimination, we are doing a great disservice to the dignity of those victims.

Or how about the use of the word “normal” when it comes to grief? Again, I don’t compare 6-year-olds’ different reactions to the world as “normal” or “not-normal”, because they are all different people with different experiences. Observing other parents, I think that is pretty common.

I read an article this morning that said: “6 months of grief is normal”.  And then the article went on to say.. oh, except if you’ve lost a spouse; especially if you’ve lost a child; and particularly if the death was a result of violence or trauma (or any of the other categories this article forgot to mention). That leaves an awful lot of not “normal” people in this world. And when we use the word “normal” to describe grief, it does a great disservice to those who don’t fall within the “norm”.

So, please, stop it. Just stop it.

Because sometimes, semantics matter.  A lot.

 

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