Thursday, May 5, 2016

My Speech at the Round House - Deaf Grassroots Movement - NM

I was honored to be invited by our New Mexico chapter of the Deaf Grassroots Movement, to speak at the Round House (our state Capitol building), yesterday.  May 4, 2016 was a day of Deaf unity across the country as simultaneous rallies were held at 50 state Capitols by Deaf Community activists - who are continuing to fight for their most basic civil rights - the right to language, education, and employment.  I spoke as a pediatrician and shared my perspective regarding the need for visual language to ensure brain and cognitive development, so that deaf children can reach their potential as whole human beings.

On a personal note, this was the first time I have been invited to speak in front of a Deaf audience in ASL.  And so on a day of Deaf History - the first nationwide day of activism - I am honored to have a personal milestone as a part of that.

(Please excuse any interpreter deviations from my transcript - hearing signers like myself are notoriously challenging to interpret, as we speak ASL with grammatical errors, etc)


"Thank you for inviting me to speak as your trusted friend.  It means a lot to me.  I am inspired by seeing all of you who put your everyday life on hold to come together and fight for your rights.  It inspires me to join your fight and support you all.  Thank you for this experience.  I am touched.

Some of you know me.  I am a pediatrician and I worked at the New Mexico School for the Deaf for 11 years from 1998-2009.  I was the medical director.  Some of you know me as a pediatrician in Albuquerque.  Patsy, you brought your son to me, and that's how we first met.  I was your son's doctor.  Some of you know me through social connections in the Deaf Community.  I also want to share that through the years I have had 4 deaf employees - well, 3 Deaf and one hard-of-hearing.

I want to give you a little more background.  I began learning ASL in 1984. Since that time, over the past 30 years, I've witnessed your fight against barriers in communication, with finding employment, with access, with acceptance by hearing people.  I've also witnessed your amazing Deaf spirit, your power, and your continuing fight on behalf of generations of deaf children and their right to progress.

I am here to speak as a pediatrician, a doctor of deaf children.  I've also witnessed deaf children's hunger for language, for stimulation of their brain, their hunger for connection, their struggle for a healthy identity as a whole person, and for a place of safety and security to live in this world.

As a pediatrician I would like to share with you -- and probably you already know --- that most deaf children's brains are starved for language.  Their brains are not developing to their full potential. Their brains are stunted by the lack of exposure to accessible language.

What is true is true for all children - hearing as well as deaf:  They must have accessible language exposure for successful brain development.

It is very common that when a newborn is identified as deaf, hearing parents still expect that language stimulation and brain development will have to come through sound, as it did for them, and all the people they know.  So, they naturally seek technology, like cochlear implants, to make this possible. They see it as a health problem that needs attention.  The see their child as having a part that doesn't work - and they seek to have it fixed.

However, I have a different perspective.  I see the deaf child as already whole; intact and with a natural hunger for visual input.  I feel it is important that ASL be the first priority.  ASL is not a tool for communication.  If someone such as a doctor or educator says, "ASL is a good tool for communication." I say "No!"  I reject that.  ASL is a language and a language is so much more than a tool.  A language stimulates the brain to grow and develop.

Think of Nyle DiMarco.  If Nyle's parents thought that he was defective or saw him as broken, or less than whole, do you think he would be where he is today? Would he have been able to become such a rising star? Nyle's parents knew that he was fine.  And he was exposed to visual language from the start.  So, he was given the means to develop his true potential.  He did not have to settle for a lowered bar.  We see how skilled he is in handling so many challenges on the show.  And he does it with aplomb.  He is rising and the sky's the limit for him.

In contrast, we see deaf babies born into hearing families who want the best for them.  But the parents are distracted by the advice of medical professionals who focus on improving their child's audiogram by increasing the child's access to sound.  The notion from the medical world is that a better audiogram will solve more of this deaf child's issues in life.

Sound is fine. I don't have problem with giving a child sound.  But it is not a substitute for language. An improved audiogram does not insure language acquisition, because sound is not the same as language uptake.  More sound does not equal language development or brain development.
This, you probably already know through your life experiences as Deaf people.  No one needs to tell you. But I am here to say that I have witnessed this.  I am a doctor, and I know this too.

So we need to work together to ensure that deaf babies get accessible language .  And I look forward to working with all of you on this.

Thank you. "

Friday, January 29, 2016

Timely, Trusted, Practical?? - ASL Version

With encouragement from members of the Deaf Community, I have set up a YouTube channel.  You can subscribe or find my videos on issues affecting deaf and hard of hearing children here.  

I will also post videos on this blog with written discussions. 
 I am not doing translations.  I am not an interpreter. 
I find that when I use ASL I tend to "set up" discussions differently 
and use the language differently.  
I believe it is more effective for me to use English naturally, and ASL naturally. 
Separate but equal.  
As a bimodal bilingual person, this is what feels right and natural to me and how I use language to communicate.  
I hope it works for you.  

I hope you find this discussion of the Contemporary Pediatrics Article useful.  Please share your feed back with me.  Thank you.  

For link to the full journal article click here

For link to the JCIH supplement click here

For link to the bioethical debate in Pediatrics click here

This issue of Contemporary Pediatrics has an additional article on EHDI regarding a presentation done by Rachel St. John, MD 
at the annual meeting of the American Academy of Pediatrics:
 Dr. St. John is a certified ASL interpreter as well as a board-certified pediatrician.  She reviewed the article, which appears to be written by a medical writer. 
For link to this article click here

The journal website also hosts a piece dated January 22, 2016 with the ironic title:  
Living In A Silent World Is Not An Option

More on these last 2 articles in a future post.

Thursday, January 28, 2016

Timely, Trusted, and Practical?

Peer-reviewed and in my mailbox today
I am sorely disappointed in the latest issue of Contemporary Pediatrics which has several articles on "Hearing and the Pediatrician".  I have been receiving the journal for many years.  Even though I no longer see patients in a practice setting, it still arrives in my home mail box.  Generally, it provides nice reviews of current practice. It has never been crisp and cutting edge.  Rather, it is widely read as a practical guide on relevant topics.  In the past I had found it useful keeping up on the latest recommendations.

The mission statement is:  Office and hospital-based pediatricians and nurse practitioners use Contemporary Pediatrics timely, trusted, and practical information to enhance their day-to-day care of children. We enhance pediatric providers' professional development through in-depth, peer-reviewed clinical and practice management articles, case studies, and news and trends coverage.

However, they have sorely missed their mission's mark with these articles.  My main complaint is that the "treatment" section in the cover article by Pat Bass III, MD does not address a single issue facing deaf and hard of hearing babies and their hearing families.  There is not a mention of language access and acquisition, risk of language deprivation, deaf role models, or ASL.  The treatment section also misleads by suggesting that being deaf or hard of hearing is a temporary condition.  Furthermore it seems his approach is that a simple read of these facts will arm the pediatrician with the knowledge to make the right referral for the right cure.  There is no depth to discussion, no mention of options, debate or controversy.  No mention of pitfalls or outcomes.  No mention of the Joint Committee on Infant Hearing Goals 4 and 9 of specialized early intervention with qualified professionals who are specifically trained to work with deaf and hard of hearing infants and  access to other families with deaf and hard of hearing children and those trained to be language and cultural mentors.  (For JCIH supplement click here).  No mention of early intervention / involvement at all.

There is no discussion of the bioethical debate that was published in Pediatrics in 2015 by John Lantos and colleagues (Mellon et al.), stating the conclusion that all deaf children should learn sign language.

Below is the link to the cover article.  I added a brief summary and some additional comments.

Page 14 of the printed journal (Vol 33, No. 1, Jan 2016) has this article slated as PEER REVIEWED FEATURE: Pediatric Hearing Loss.  It then states in large blue print, "Pediatric hearing loss is a very treatable problem." This is one of the strangest and most misleading statements I have ever seen.  I can only wonder who are the "peers" who agreed to that comment.

The author presents the dry facts about EHDI benchmarks of 1-3-6 months, and then lists some suggestions and possible health factors in the history that should raise the suspicion of "hearing loss".

He then states..."Any patient who failed screening..."  Failed is an incorrect term here.  Patients don't "fail" a screening test.  The language EHDI recommends is "refer".  I say we should use the same terminology we use for other screening tests in the health care setting.  "Positive" is the appropriate medical term for the result when the screen picks up the condition it is testing.  Therefore, it is not only culturally appropriate,  but also medically appropriate,  to say that a baby who appears to be deaf or hard of hearing had a "positive newborn hearing screen".  Can we please start saying that?

The article continues with information about in-office testing, detecting "delayed onset hearing loss" in children and medical tests to detect possible health problems that can be associated with causes of congenital (at birth) deafness - such as heart arrhythmias, kidney disease, or looking for Cx26 as the genetic source.  All of this is very standard.

The final section is titled "Treatment".  Here the author discusses a list of remedies based on the cause of deafness.  They include tubes in the middle ear, surgery, amplification by age 6 months for "improved outcomes" via hearing aids or bone conduction or bone anchored devices, and finally....
"Cochlear implants are recommended for severe-to-profound bilateral SNHL in cases in which hearing aids have not been beneficial.  Bilateral cochlear implants have been advocated to improve functional hearing and performance in settings with a lot of background noise and to increase ability to localize sound."

He summarizes with "Hearing loss today is a very treatable problem.  The pediatrician needs to understand the importance of newborn hearing screening."

Author, Pat F Bass III, MD, MS, MPH is described as the chief medical information officer and associate professor of medicine and pediatrics Louisiana State University Health Sciences Center, Shreveport.  I have not heard the title "medical information officer" before.  You will note that the references listed are mostly surgical journals from the ENT specialty.  He does list Yoshinaga-Itano et al, 1998., in which she and her group showed that language access (sign or spoken) by 6 months prevents long term language delay.  He also lists the JCIH position paper of 2007, but apparently neglected to utilize the more recent supplement to that document from 2013 (see link above).

This issue of Contemporary Pediatrics has an additional article on EHDI regarding a presentation done by Rachel St. John, MD at the annual meeting of the American Academy of Pediatrics:  Dr. St. John is a certified ASL interpreter as well as a board-certified pediatrician.  She reviewed the article, which appears to be written by a medical writer.

The website also hosts a piece dated January 22, 2016 with the ironic title:  Living In A Silent World Is Not An Option

More on these last 2 articles in a future post.

Friday, January 8, 2016

Good Advice Often Falls on Hearing Ears

We can look at the problem as an epidemic of language deprivation among deaf and hard of hearing people.  How we see it,  and the language we use to name it and discuss it, will vary depending on our vantage point. See Where I Stand.   During my time studying at Gallaudet in 1985, I listened to many Deaf people recount frustrations with physicians and their agents (audiologists and SLP's).  They often stated that the medical world had a  warped perspective on how to help hearing families with a deaf baby.   Over the years, the stories of pain and frustration with the medical perspective have only accumulated.  They come from many other sources as well,  including early interventionists (EI's), educators, parents and family members of deaf children, and from some audiologists and SLP's, themselves.  Even today, it is common to think that the problem originates within the medical community.   Parents who sign often wish someone had told them the truth earlier.  They lament lost time, opportunity, and needless pain.

As a pediatrician who immersed myself in Deaf Culture years before I immersed myself in Medical Culture,  I see it differently.  I came to my medical practice with a belief in the power of ASL as the way to both brain development and emotional connection for these babies.  I already understood that the wisdom to impart to these parents was sheltered within the Deaf Community.  I had hoped that by creating a medical practice to serve these families, I would be able to bring a unique model that integrated the Deaf World / ASL foundation for brain and emotional development with some of the technological tools that medicine offered. 

Some parents took my "integrated model of deafness" to heart.  But what is more important is that many did not.  Despite my credentials and excellent reputation (medical director of our state's residential school for the deaf, large number of deaf babies in my practice, use of sign language, American Academy of Pediatrics "Chapter Champion" for Early Hearing Detection and Intervention, and more) many ignored my advice and did the opposite of what I recommended.

What compels families to ignore the facts and an "expert" with extensive knowledge and experience,  and choose the other, risky, disruptive, and even detrimental methods for their child? This is where we must shine a light.  In a word it seems to be audism.  Audism in its most basic form is the belief that one is superior based on one's ability to hear.  Audism is cultural, and it is so deeply ingrained in the psyche of hearing people, that it is impossible to detect in oneself until it is pointed out.  Most hearing people do not even have an awareness that being hearing has a cultural component.  So they cannot make the intellectual leap of dissecting out a cultural attitude to see how it is shaping their decisions. Their hearing-ness is taken as normalcy and another's deafness (even their own child's) is seen as a defect.  In many instances, the deafness is perceived as nothing less than a threat to their child's well-being and the stability of their family.  I believe these parents make crucial decisions based on a "knowing and feeling" that is deeply rooted in their audism.  Their fear and their audist perspective is the context in which my advice was given.  In other words, it fell on hearing ears.

There is more to say on this topic... But for now, I leave my hearing readers with this:

Discussions of audism are sensitive and triggering.  This topic always requires compassion, if not from others, then self-compassion for this sick part of ourselves.  And compassion from us for those who have been wounded by audism. 

Growing up hearing in a hearing world that we took for granted, means growing up in audism.  We are audist by design; for how could we not be?  We hearing people must not hide from our own audism, or push it down in shame.  We must allow it to rise to our awareness.  We must welcome it like a sick friend in need.  For it is a sickness, that we must nurture back to health.  My experience in my own life is that when we are ready to do that, we will find Deaf guides along the way who can help us to see what they see.  Then we can continue the life long process to heal this part of ourselves.  We will never be done with this work, because we were shaped by an audist society.  But we can make progress.  Through understanding ourselves we will understand others, and hopefully be closer to solutions for deaf babies in an audist world.