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Non-Broadcasting 101: How to Support Families Without Bias
Leeanne Seaver, M.A.Hands & Voices National
Denver, Colorado
Karen Putz, M.A.Illinois Hands & Voices
Chicago, Illinois
Copyright © 2006 Hands & Voices
In the past 12 months, I/we have not had a significant financial interest or other relationship with the manufacturer(s) of the product(s) or provider(s) of the service(s) that will be discussed in this presentation.
This presentation will not include discussion of pharmaceuticals or devices that have not been approved by the FDA nor discussion of unapproved or “off-label” uses of pharmaceuticals or devices.
These guidelines are in accordance with the American Academy of Pediatrics Faculty Presentation Guidelines.
Faculty Disclosure Information
Hands & Voices Mission:
Hands & Voices is dedicated to supporting families with children who are Deaf or Hard of Hearing without a bias around communication modes or methodology.
We’re a parent-driven, non-profit organization providing families and the professionals who serve them with the resources, networks, and information they need to improve communication access and educational outcomes for their children.
Our outreach activities, parent/professional collaboration, and advocacy efforts are focused on enabling children who are deaf or hard of hearing to reach their highest potential.
Copyright © 2006 Hands & Voices
Tuning in to what we’re sending out…
Are you “broadcasting” your PBS (Personal Belief System) or
predisposing an outcome through bias?
Copyright © 2006 Hands & Voices
Bias:
To cause to swerve from a course; to influence (usually unfairly) or inspire with prejudice
Copyright © 2006 Hands & Voices
Personal Belief System:
A set of propositions held to be true based on our own experiences,
education,
and assumptions.
Copyright © 2006 Hands & Voices
The Impact of PBS
Our Personal Belief System is what we drawfrom as we support each other.
Parent-to-Parent connections have credibilityand compassion.
We can learn from one another’s experiences.
Copyright © 2006 Hands & Voices
Bias vs PBS
• Intentionally influencing the audience
• Manipulating people, information, and events to achieve a predisposed outcome
• Sharing the benefit of our experience & education with each other
• Connecting on common ground
• CredibilityCopyright © 2006 Hands & Voices
When PBS Becomes Bias
• When we use our PBS to generalize or extrapolate towards a conclusion for another’s situation, we shift from PBS to Bias.
• Bias & manipulation can compromise or destroy the authenticity of the experience, and the investment of parents.
Copyright © 2005 Hands & Voices
What the Research Says…
(In an analysis of 181 Research studies (or so)“…the most frustrating finding concerning language
development of children who are deaf is the fact that the researchers have not yet found THE approach that supports development across the domains of social functioning, educational achievement, and literacy. A single such approach is unlikely….”
from Language Development in Children Who are Deaf: A Research Synthesis (2001)
www.nasdse.org/forum.htm
Do you understand the complexity of this issue for the family?
• Age of Identification• Onset of Hearing loss • Degree of Hearing loss• Benefit from Hearing Aids• Family Dynamics:
– Siblings & Extended Family– Lifestyle– Bilingual issues– Culture & Values– Attitude & Commitment– Finances
• Multiple Issues or Labels• Family Support System• Urban or Rural• Availability of Resources
• Technology– Parents can choose sound– Validity of testing
• Society issues– Beliefs about Disability– Social Isolation
• Child’s Innate Abilities: learning style, personality, development, inclinations
• Peers & Social Outlets• Educational Options• Long term Goals• Validity of information• Flexibility and fluidity of choice-making
process– Let the child leadCopyright © 2006 Hands & Voices
Broadcast Testing:
• Is your PBS crossing the line into bias?-- Do you have an outcome in mind for this family? -- Do you know what’s best for them?
• Do you have experiences working with families who have been successful with diverse modes/methods of communication?
• Can you share information effectively and equitably without conveying your own opinions?
Copyright © 2006 Hands & Voices
Condoned Bias
• Private practitioners• Schools/Orgs with a published
communication philosophy
“I am biased, so you need to take that into consideration here. There may be other viable options for you to explore, and I strongly encourage you to do so!”
Copyright 2006 Hands & Voices
Ask Yourself…
• How are you helping families explore their choices?
• Do you believe that the parents will make the right choice for their child?
• Do you understand that sometimes making the ‘wrong’ choice gets you to the right choice?
Copyright © 2006 Hands & Voices
But remember….
Flexible, but not wishy-washyNo choice is set in stoneParents will gain confidence with experience
and rise to the occasionThe child should move from passive
participant to active participant as early as possible so they grow into a sense of self advocacy.
This is hard! This is easy! Copyright © 2006 Hands & Voices
Appropriate, Effective Input
• Qualify your remarks, “This was true for me and my family, but your situation is different.”
• Sometimes it’s “just the facts”
• “Don’t just do something – stand there and pay attention” (Dean, 1991)
Copyright © 2006 Hands & Voices
Hands & Voices’ ‘Sniff Test’
• How do you recognize bias?• You’ll know it when you hear it!
– “It’s harder to teach a child to sign than to speak.”– “Teaching a deaf/hh child to speak is harder than teaching
them sign language.”– “ASL is the native language of ALL Deaf children”– “It’s a Hearing world, and you have to learn to speak to be
successful in it”– “Sign language is a crutch”
Copyright © 2006 Hands & Voices
‘Sniff Test’ continued…
– “If you teach sign language to your child, s/he will never learn to speak.”
– “If you don’t teach sign language to your child, he will learn anyway when he grows up, and then he’ll be angry that you kept it from him.”
– “If your child fails in this method it is because of your lack of commitment as a parent.”
– “ALL Deaf and hard of hearing kids should/can learn to _____________”(enter any method)
– “An oral child shouldn’t be exposed to sign.”– And more…
– Copyright © 2006 Hands & Voices
Passing the Sniff Test
– Equitable presentation of information– PBS is disclaimed– Non-offensive interactions– Achieves the perception of balance and avoids the
perception of imbalance– Troubleshooting as necessary– Benign support of other groups
– Copyright © 2006 Hands & Voices
The Benefits of Being Un-Biased
Confidence in the choices you are facilitating No need to defend your choices or “bias” Not tied to a outcome you can’t control Increased trust in the relationship Greater family ownership of their choices Diminishment of fear, escalation of HOPE
Copyright © 2006 Hands & Voices
“Please just tell me what to do!”
• Validation• Re-Focus• Disclaim• Affirmation• Patience
Copyright © 2006 Hands & Voices
The Parents’ Obligation
.Distinguish between your experience & realities and those that will be unique to your child because s/he is deaf or hard of hearing.
Develop a “lens” that recog-nizes all communication and assures that your child has access to it.
Love and nurture your child as a human being..
Copyright © 2006 Hands & Voices
The Parent-Support Obligation
• Distinguish between your experience and truths, and those that will be unique to this family.
• Deserve their trust.• Do not manipulate.
Copyright © 2006 Hands & Voices
What Makes the Choice Right?
“Our decision was both right and wrong and demonstrates how perplexing and delicate choices like these are to make
& accept.” – David Seerman (Changed by a Child, p.96)
Our H&V Motto:
What makes the choice work foryour child and family is what
makes the choice right.Copyright © 2006 Hands & Voices