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On Engaging and Miscommunication (2 of 3)

  • Posted on June 29, 2010 at 12:20 AM

In my last post I introduced the concept of engaging and how it relates to prejudice.  Lack of engagement also occurs at what I would call a micro level.  At this level, we fail to engage with people we know and care about.  This is less an issue of stereotyping than it is lack of communication.

We interact with people we know on a regular basis.  These are our family members, our friends, our co-workers, and our neighbors.  We don’t necessarily stereotype these individuals, but we do create mental templates of who and what they are.  These templates are more the accumulated experiences we’ve had with these individuals.

It is often easier to interact with these templates than it is to engage with the individuals. This goes back to the difference of engaging with your child and half-listening while thinking about that pesky to-do list running through your mind.  The problem with failing to engage while talking with people we know is that even our templates of these individuals are faulty. 

However well we know an individual, our perception of them is always filtered through our own biases and our own experiences.  We insert these filtered perceptions into our mental templates of individuals, and what we get is a flawed, distorted copy of the person we know.  When we interact with the template instead of the person, we are interacting with a distortion.  Only by genuinely engaging with the individual are we able to break past our own internal filters to see the person more clearly and understand what the individual is trying to communicate.

This becomes especially important when we interact with people with atypical means of communication, but that will be the subject of my next post.

The point of this post is that failing to engage with individuals we know creates miscommunication.  If we think we know what someone is going to say, we often fail to listen to what is actually said.  Even after we have failed to hear them, we think we know what they said.  In our mind, we insert the conversation we think we had into our mental template of that person.  Not only does this mean we have miscommunicated in this one instance, it also perpetuates the miscommunication in future conversations.  We go back to the conversation we think we had and take it a little further the next time we talk to that person.  The second time we get a little further from what is actually being said.

Only be engaging in the conversation and listening actively and involving ourselves in how our own life intersects with the other person’s life can we truly know what that person is saying.

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On Engaging and Prejudice (1 of 3)

  • Posted on June 27, 2010 at 12:01 AM

Executive Summary:  To engage with others we must actively participate in our interactions with them.  This requires us to exert mental effort and also risks challenging our thoughts, feelings, and worldviews.  Because we do not want to exert the necessary effort or take this risk with people who are very different from ourselves, we rely on stereotypes.  This leads to prejudice and discrimination.  In order to avoid prejudice and discrimination, we have to engage with others—especially those who are different from ourselves.

 

Engage has many definitions; I tend to use it in the more general sense of “to involve oneself or to participate,” which is the context in which I use it now.

Engaging is an active state of being.  You can engage in a job.  Say you’re sorting through information at work.  While you’re doing this you could be distracted by whatever is on your mind.  Or you could engage in the task, focusing your mental prowess on the task at hand.  You will likely produce higher quality work if you engage on the job.  You can engage in a conversation.  Say you’re talking with your child.  While you’re doing this you could be distracted by the mental to-do list running through your head.  Or you could engage in the conversation, focusing your attention on what is important to your child.  You can engage in a story.  Say you’re reading a book or watching a movie.  You could go into that “glazed” state where you are absorbing the entertainment and “rotting your brain.”  Or you could engage in the story by paying attention to the creative work and trying to experience what the artists were trying to express.  You bring something of yourself to the experience and come out of it with something truly unique—a communion of sorts between the artist and yourself.  In each of these examples, you are bringing something of yourself to the task and making for a richer experience by engaging.  It requires both an effort on your part and willingness to open yourself up to something outside of yourself, but in return you get a higher quality experience.

 I propose that one of the reasons prejudice (and the discrimination that results from prejudice) is so prevalent in our society is because of a lack of engagement.  I propose this lack of engagement can also explain the divisive politics that rages through the U.S. and other examples of polarization.

Basically my theory is this:  To communicate effectively and productively with someone who thinks and feels differently than you do, you need to engage with that person.  The more differently that person thinks or feels, the more you need to engage with that person in order to gain the kind of understanding necessary for genuine communication to occur.  We fail to do so for two basic reasons.  First, engaging is work.  It necessitates that we exert a significant amount of mental effort.  It is much easier to just be there, not really listening, not really understanding; relying on our assumptions to fill in the gaps left by our failure to engage.  Second, engaging can be uncomfortable.  When we engage in someone who is significantly different from ourselves we are willfully challenging our own assumptions, ideas, and worldviews.  This is inherently uncomfortable and human beings tend to develop self-defense mechanisms to prevent such a challenge from occurring.

So, instead of engaging we stereotype.  These stereotypes can be positive, but are more often negative.  Even when positive, these stereotypes are destructive because they prevent understanding and dehumanize the “other” in the process.  In this sense, stereotypes are very similar to a template.  Imagine you are trying to start a new blog.  You find a template that has the right look (stereotype), but after you start using it you realize the content you want to include doesn’t fit the template.  The work-intensive method would be to start from scratch and build your own template that has the look you want but also meets the needs of the content you want to provide.  A less work-intensive method would be to modify the template to account for the content you want to add but cannot fit.  However, it is more likely that you will simply trash the content that doesn’t fit—you don’t really need it anyway—and stick to the template you’ve chosen.  If people were blogs, then the template would be what they are (doctor, Republican, person with disabilities) and the content would be who they are (their thoughts, feelings, experiences, and the conclusions they’ve drawn from them).  Our failure to engage trashes the content of the person in favor of the imperfect, inappropriate template we chose to interpret their content through.

This occurs at what I would call the macro level.  We stereotype groups of people and put them into the templates we’ve chosen for them.  When we meet individuals who belong to those groups, we trash any content (who they are) in favor of the template we assume they fit into (our own concept of what they are).  This also occurs at what I would call the micro level, which constitutes using templates of people we know instead of engaging with them at a particular time and place.  That will be the subject of my next post.

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Busy Being Recognized

  • Posted on June 22, 2010 at 7:45 AM

This is what I’ve been up to:

Before

 

 

 

 

 

 

 

 

[Picture of me in cap and gown outside the hotel where the graduation ceremony was held.]

Cropped and Close

 

 

 

 

 

 

 

 

[Picture of me in cap, gown, and honors ribbon holding up my graduation certificate.]

The busyness started on Thursday when I picked up my brother from the airport.  That was a late night.  Then, Friday (an early morning) I attended the graduation ceremony.  My parents-in-law took us out to lunch.  And we came home to finish getting ready for the party.  The last of which was done while watching Avatar (much better movie than all the marketing indicated—the best part of the movie is not the cool new style, but instead it is the world-saving story).

Saturday we had to finish finishing getting ready for the party and then we partied.  Sunday was a much slower day and sad, too, taking my brother back to the airport.

Then, Monday, it was time to get back to work.

It all went very, very well, but blogging just didn’t make it into the mix.

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Praying for Justice

  • Posted on June 15, 2010 at 12:49 AM

Emotional prompt:

On the morning of May 24, 2010, I arose at approximately 6:30 am to wake my son for school.  I discovered that my son was not in his room.  I did not immediately worry because I know that he loves to go for walks.  A few hours later at approximately 10:30 I called the police station when he had not returned.  I was told that he was in custody and was currently being questioned but I was not told why. I immediately told them that my son was Autistic. Although I told them this, they still refused to offer me any information.   I told them the to ensure he got his phone call.  Once he called me, I could barely hear him because his speech was very low.  The only thing I could make out was that he was attacked by the police and he didn’t mean for any of this to happen.  I still had no idea what he was talking about.

Read the rest of the story at A Voice for Neli.

Lord, I ask You to protect this young man.  Keep him whole in mind, body and spirit through this ordeal.  I ask that You shed Your light and truth on this situation.  Reveal the truth for the world and the authorities to see.  Give no quarter to those who would hide in the darkness to sacrifice justice.  Let the truth out and let this family be whole once more.

So I pray, in the name of Jesus Christ, Amen.

* * *

I read these stories of how society reacts to autistics “loose” in the community, and I worry.

Things have to change.

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ASAN Update: Joint Letter

  • Posted on June 13, 2010 at 12:44 AM

Joint Letter on Cross-Disability Representation in Designating Medically Underserved Populations

To:

Kathleen Sebelius
Secretary
Health and Human Services

Mary Wakefield
Administrator
Health Resources and Services Administration

Pam Hyde, JD
Administrator
Substance Abuse and Mental Health Administration

We the undersigned disability advocacy groups urge you to include representation of the cross-disability community on the Negotiated Rulemaking Committee (NR) that will establish a comprehensive methodology and criteria for designation of “Medically Underserved Populations” (MUPS) and Primary Care Health Professions Shortage Areas. As a cross-disability community, we are stakeholders in the task you will undertake. However, we do not fit within the geographic census track data that has been used in the past to designate medically underserved populations. More than 54 million Americans with disabilities, including individuals with physical, mental health, sensory, environmental, cognitive, intellectual, and developmental disabilities experience inadequate health care because of a lack of primary care providers trained to treat them. In 2000, Healthy People 2010, cautioned that "as a potentially underserved group, people with disabilities would be expected to experience disadvantages in health and well-being compared with the general population.” They have and the data is startling.

Basic primary care is not a guarantee for anyone in the disability community. (Drainoni M, Lee-Hood E, Tobias C, et al., 2006) Three out of five people with serious mental illness die 25 years earlier than other individuals, from preventable, co-occurring chronic diseases, such as asthma, diabetes, cancer, heart disease and cardiopulmonary conditions. (Colton & Manderscheid, 2006; Manderscheid, Druss, & Freeman, 2007) Inaccessible medical equipment and lack of trained physicians, dentists, and other health professionals prevent individuals with disabilities from receiving the basic primary and preventive care others take for granted, such as getting weighed, preventative dental care, pelvic exams, x-rays, physical examinations, colonoscopies, and vision screenings. (Kirschner, Breslin, & Iezzoni, 2007; Chan, Doctor, MacLehose, et al. (1999); Manderscheid R., Druss B., & Freeman E . 2007).

People who are deaf or experience significant problems hearing report they were three times as likely to report fair or poor health compared with those without hearing impairments. (NCD, 2009). They have difficulty communicating with primary care providers who don’t want to pay interpreters or “bother” with a Telecommunication Device for the Deaf (TDD). Children with ADD may have difficulty getting examined by primary care providers untrained to treat them. People with significant vision loss are more likely to have heart disease and hypertension, experience a greater prevalence of obesity, and smoke more than the general population. (NCD, 2009). Further, people who are blind often miss out on the prevention handouts and booklets given to patients by primary care providers. Even providers report they have difficulty communicating with patients who are deaf or have severe visual impairments. (Bachman S., Vedrani, M., Drainoni, M., Tobias, C., & Maisels L., 2006)

27% of adults with major physical and sensory impairments are obese, compared with 19% among those without major impairments (Iezzoni, 2009). Research shows that individuals with intellectual disabilities must contact 50 physicians before they can find one trained to treat them. (Corbin, Holder, & Engstrom, 2005)

According to the National Council on Disability (NCD), 2009 report, The Current State of Health Care for People with Disabilities, “[p]eople with disabilities experience significant health disparities and barriers to health care, as compared with people who do not have disabilities.” Further, “[t]he absence of professional training on disability competency issues for health care practitioners is one of the most significant barriers preventing people with disabilities from receiving appropriate and effective health care.”

Members of the disability community experience a broad spectrum of functional limitations that result from their disabilities. Many experience secondary chronic conditions. As the recent draft “A Strategic Framework 2010-2015 – Optimum Health & Quality of Life for Individuals with Multiple Chronic Conditions “ by the HHS Working Group on Multiple Chronic Conditions” (May, 2010) reported, functional limitations can often complicate access to health care and interfere with self-management. The Institute of Medicine noted there is evidence that patients actively receiving care for one chronic condition may not receive care for other unrelated conditions.

The 1997 IOM report Enabling America bluntly stated that federal research effort in the area of disability was inadequate. On July 26, 2005, the U.S. Surgeon General issued a Call to Action warning that people with disabilities can lack equal access to health care. Though some funds are available for developmental and intellectual disabilities through the CDC, Maternal and Child Health, and the Developmental Disabilities Act, the 2007 IOM report, The Future of Disability in America states that research spending on disability is miniscule in relation to current and future needs. In this Report the IOM also warns that the number of people with disabilities is likely to rise, fueled by aging baby boomers.

We need to assure adequate numbers of primary care providers are trained to treat the population of people with disabilities; people with disabilities from across the disability community have access to adequate primary care; and funding is available for research and programs to end the health disparities people with disabilities face. With the passage of health care reform and the formation of the NR Committee to redefine “medically underserved populations,” HRSA can finally work to rectify the problem for all people with disabilities. Collectively, we are an underserved population and we are not adequately represented on the proposed NR Committee. We urge you to appoint someone to represent the cross-disability community, recognize people with disabilities as a constituency stakeholder within the definition of medically underserved populations, and include subject matter experts who represent the health care needs of the cross-disability community. Our groups are glad to serve as resources for HRSA. Thank you. (References below signatures.)

Sincerely

Access Living
ADAPT
ADAPT Montana
Alpha-1 Association
Alpha-1 Foundation
American Association of People With Disabilities
American Association on Health and Disability
Amputee Coalition of America
American Medical Rehabilitation Providers Association
American Network of Community Options and Resources
American Speech-Language-Hearing Association
The Arc of the United States
Association of Maternal & Child Health Programs
Autistic Self-Advocacy Network
Bazelon Center for Mental Health Law
Brain Injury Association of America
Bronx Independent Living Services
California Foundation Independent Living Centers
Center for Disability Rights (Rochester)
Center for Independence of the Disabled, NY.
Center for Self-Determination
Center for Women's Health Research at UNC
CHADD – Children and Adults with Attention-Deficit/Hyperactivity Disorder
COPD Foundation
Council for Exceptional Children
Disability Health Coalition
The Disability Network
Easter Seals
The Epilepsy Foundation
First Signs
Hearing Loss Association of America
Life Skills Institute and Life Skills, Inc
Little People of America
Mental Health America
National Association of County Behavioral Health and Developmental Disability Directors
National Association of Head Injury Administrators
National Association of Councils on Developmental Disabilities
Khmer Health Advocates, Inc.
National Coalition for Mental Health Recovery
National Council on Independent Living (NCIL)
National Down Syndrome Society
National Organization of Nurses with Disabilities
National Association of Private Special Education Centers
National Association of the Deaf
National Center for Environmental Health Strategies, Inc.
National Multiple Sclerosis Society
National Spinal Cord Injury Association
New York Association of Psychiatric Rehabilitation Services
Not Dead Yet
Physician-Parent Caregivers
Regional Center for Independent Living (Rochester, NY)
Rochester ADAPT
Spina Bifida Association
Statewide Independent Living Council of GA, Inc.
Stop CMV - The CMV Action Network
Substance Abuse Resources and Disabilities Issues Program (SARDI), Boonshoft School of Medicine
TASH
Tourette Syndrome Association
Tuberous Sclerosis Alliance
Master of Public Health Program, Tufts University School of Medicine
United Cerebral Palsy
United Spinal Association
Center on Independent Living, University of Kansas

References:
Bachman S., Vedrani, M., Drainoni, M., Tobias, C., Maisels L., , Provider Perceptions of Their Capacity to Offer Accessible Health Care for People With Disabilities J Disabil Policy Stud.; Winter 2006; 17, 3; 130-136
Chan L, Doctor JN., MacLehose RF., et al. (1999) Do Medicare patients with disabilities receive preventive services? Arch Phys Med Rehabil. 80:642-646
Colton CW., Manderscheid RW.. (2006, April). Congruencies in increased mortality rates, years of potential life lost, and causes of death among public mental health clients in eight states. Preventing Chronic Disease: Public Health Research, Practice and Policy. 3(2), 1-14. Available at www.pubmedcentral.nih.gov/articlerender.fcgi?tool=pubmed&pubmedid=16539783.
Corbin S., Holder M., Engstrom K. (2005) Changing attitudes, changing the world: the health and health care of people with intellectual disabilities. Washington, D.C.: Special Olympics International.
Drainoni M, Lee-Hood E, Tobias C, Bachman S, Andrew J, Maisels L. (2006) Cross-disability experiences of barriers to health-care access. J Disabil Policy Stud. 17:101-115.
HHS Working Group on Multiple Chronic Conditions. (2010, May) Strategic Framework 2010-2015 – Optimum Health & Quality of Life for Individuals with Multiple Chronic Conditions. (Draft) Available online at:
Iezzoni, L.I., (2009, January 27) Testimony before the Senate Health, Education, Labor, and Pensions Committee, by Lisa I. Iezzoni, MD, Professor of Medicine, Harvard Medical School and Associate Director, Institute for Health Policy, Massachusetts General Hospital, Boston, MA.
Iezzoni LI, McCarthy EP, Davis RB, Siebens H. Mobility impairments and use of screening and preventive services. Am J Public Health. 2000;90:955-961.
Institute of Medicine, (1997) Enabling America, National Academies Press, Washington, DC
Institute of Medicine, (2007) The future of disability in America. National Academies Press, Washington, DC.
Kirschner K.L., Breslin, ML., Iezzoni, LI., (2007, March 14) Structural impairments that limit access to health care for patients with disabilities. JAMA,. 297:10:1121-1125
Manderscheid R., Druss B., Freeman E . (2007, August 15). Data to manage the mortality crisis: Recommendations to the Substance Abuse and Mental Health Services Administration. Washington, D.C.
National Council on Disability (NCD), (2009) The Current State of Health Care for People with Disabilities. Available online at: www.hhs.gov/ophs/initiatives/mcc/federal-register051410.pdf
US. Department of Health and Human Services. Health People 2010. 2nd ed. With Understanding and Improving Health, and Objectives for Improving Health. 2 Vols. Washington, DC: U.S. Government Printing Office, November 2000

[Cross-posted with permission]

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Willy’s Achievement

  • Posted on June 9, 2010 at 9:16 PM

Today was a day worth remembering.  To celebrate the last day of school at his old elementary school, Willy’s teachers made an assembly to honor the kids.  Each of the three classes of fifth graders elected a classmate to one of a variety of awards.  This ceremony would be followed by a slideshow of pictures from over the year.

Mark and I sat in the audience, listening as awards were cited and names were called.  Then, I heard Willy’s name.  His class chose Willy for one of the awards!  Which one?  Friendliest, of course!

Willy holding an award that says: Friendliest Award

Willy holding an award that says: Friendliest Award

Now, after school is all over, Willy took a quick break from his post-5th grade/beginning of summer festivities to give a short interview:

So Willy, how does it feel to win the Friendliest Award?

Great!

Why do you think you won this award from your fellow 5th grade class?

Because I got the most votes.

Why did you get the most votes?

Because they love me!

What do you do that is very friendly?

I pick up stuff when something falls down.  [With a little coaching he added] Like when a pencil falls off of somebody else’s desk.

How does it feel to be all done with your elementary school?

Feels great!

A little sad?

Mm-mm [no]

That’s all folks.  Off he goes…His next challenge, mastering the art of making videos with a digital camera!  In the meantime, I’m going to miss Roosevelt.  It’s a great school with a lot of great “cast members” who truly believe that all kids are worth teaching!

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Teaching: New Zealand vs. Arizona

  • Posted on June 6, 2010 at 1:32 AM

Compare this:

In May 2009, the team decided he had met the goals of his plan. His family asked for a new review, but Bruno said school-district officials declined, saying Luke was fine.

In October, two months after Dr. Daniel Kessler of St. Joseph's Hospital and Medical Center confirmed autism, it was clear Luke wasn't fine.

The kindergarten teacher complained repeatedly in e-mails to Bruno of Luke's misbehaviors - spitting, hitting, throwing sand at other children and defecating in the classroom.

The teacher also said Luke seemed "defiant" but she didn't believe it was because Luke had autism.

…

In March, Gentry confirmed autism. The education team created an IEP to address autism.

A week later, Luke's teacher wrote to Bruno, "I don't even want him in my classroom to be honest with you."

Bruno filed a formal complaint with the U.S. Department of Education's Office for Civil Rights to investigate discrimination. The teacher was placed on temporary leave as punishment.

To this:

New Zealand schools should view autism as a learning preference, rather than a difficulty or disability, says UK educationalist Neil Mackay.

His comments come in response to Autism New Zealand’s statement that social stigma, intolerance and ignorance in the education system are holding back the development of children with autism and driving many parents to remove their children from mainstream learning environments.

Neil Mackay is in the country this week presenting training workshops to over a thousand teachers and principals on how to meet atypical learning needs without affecting the classroom experience of other students.

He says that with the growing numbers of autistic learners, teachers need to support their inclusion in the mainstream by understanding their learning preferences and employing practical tools and strategies to improve outcomes in the classroom.

“This means fine-tuning learning so students feel empowered and supported to achieve. For children on the autism spectrum, it’s about helping teachers to understand that these children often need detail, order and certainty in their learning environment and finding practical solutions so these students can operate comfortably and confidently in the classroom,” says Mackay.

Which “z” would you rather live in?

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The Black Balloon: A Review

  • Posted on June 4, 2010 at 2:10 AM

The Black Balloon is an award-winning Australian movie that is, on the surface, one portrayal of autism through a non-autistic brother’s point of view.

When taking The Black Balloon with that premise in mind, it’s a movie I found to be both honest and challenging.  The movie takes risks, which I like from an artistic standpoint.  It has a solid, not-too-subtle message of acceptance at its core, which I like from an advocacy standpoint.

If taken outside that premise the movie can be problematic.  This movie is biased.  Charlie, the brother with autism, is not the viewpoint character.  Nor is he the main character.  While he is not dehumanized, The Black Balloon does not tell Charlie’s story.  For some viewers that’s going to be frustrating.

At face value, Charlie seems to be “the problem” that the plot intends to solve.  Thomas, the non-autistic brother (also the viewpoint character and the main character), starts off the story seeing Charlie as the problem that needs to be solved.  This can be hard to watch.  There is violence between these brothers, which can be hard to watch.  There is violence between the parents and the children, which can be hard to watch.  Charlie’s autistic traits are emphasized to the point of stereotyping, which can be hard to watch.

But—and this is a very important but—that bias is not the movie-maker’s bias; it’s Thomas’ bias.  This movie is about transforming Thomas’ perceptions of his brother.  It’s about Thomas’ journey as he grows towards acceptance, reaches for understanding, and builds an appreciation for the person Charlie is.

If I had to classify The Black Balloon, I would not call it an “autism movie” or an “advocacy movie” or even a “prejudice movie,” though there are elements of all of that within this movie.  The Black Balloon is a coming-of-age movie, in which Thomas must come to terms with his brother as he is as part of growing up.  So, while there is stereotyping in the movie, it is because for most of the movie the viewpoint character sees his brother as his autism, not because that is how the movie-maker’s envisioned Charlie.

Another thing that makes this movie problematic is my concern that viewers who have no direct experience with autism might mistake this portrayal of one autistic character as a portrayal of autism as a whole.  Obviously no movie can do that, but that doesn’t stop people from internalizing a movie and using that movie as their basis for understanding. 

Yet, despite the hard-to-watch parts and the risks of further stereotyping, the movie resonates with me.  I have a great appreciation for the parents’ struggle to provide opportunities for both their children.  I have a great appreciation for the mistakes the parents make.  I have an appreciation for Thomas’ struggle to come to terms with his own life and all the people within it.  And I have a great appreciation for the subtle way the movie-makers showed Charlie as an outsider looking in, even within his own family.  I liked how they showed that there was a person behind the stereotype—a person who wanted very much to be included in his brother’s life and for his brother to take part in his life.

Overall, I would consider the movie to be very well-done.  It’s a story with a point, but the focus was on telling the story, not on telling the point—which is very much appropriate.

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