The National Aphasia Association
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Dear Olivia,
We would like to share with you the message that we have sent to ABC news and posted
to our Facebook page and to Gabrielle Giffords Facebook page.
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In response to the flood of calls, texts, postings and emails we have received from
people in the aphasia community in the US and around the world, the National Aphasia
Association would like to offer information about this condition to the general
public in an effort to correct an error of omission in ABC's coverage of Congresswoman
Gabrielle Giffords' recovery.
First, we would like to express our heartfelt congratulations to Gabby for her recovery
so far and offer her, Mark Kelly and their family any ongoing support they might
need as they face the challenge of aphasia.
While ABC did an accurate and comprehensive job of explaining aphasia, the program
inexplicably never mentioned Gabby's condition by name. It is aphasia - the inability
to read, write, speak or communicate after a stroke or other sudden traumatic brain
injury, such as the one Gabby tragically experienced.
Many people with aphasia, their families, friends and caregivers, were very disappointed
and frustrated by this omission. Eagerly, they watched that special Monday night
edition of 20/20, hoping that finally, a greater awareness and understanding for
aphasia would be realized. The general public would finally hear the word aphasia
and begin to understand the condition. Unfortunately, the hour-long program never
used the word aphasia once, which added to the pain and frustration of the over
1 million people estimated to have aphasia.
It was only during the subsequent Nightline program hours later that night, when
Bob Woodruff used the word aphasia when he talked about his struggle with the condition
and his understanding and compassion for Gabby's difficult, but hopeful journey.
We urge ABC and other news media to use the word APHASIA when reporting on Gabby
Giffords and other people with the condition. This will help raise awareness and
understanding.
Too often, people with aphasia are mistaken for being mentally incapacitated or
being under the influence. This is not true. People with aphasia maintain their
intellect completely. They have a communication disorder that makes it difficult
for them to express themselves and understand language. It is estimated that there
are over 200,000 new cases of aphasia every year.
At the National Aphasia Association (a nonprofit organization), we offer free and
low-cost support for people with aphasia and their families including:
NAA Hotline (800-922-4622) helps over 4,000 families a year.
www.aphasia.org receives over 12,000 hits per month, helping an estimated 300,000
families a year.
NAA National Registry links to over 440 aphasia US support groups and 210 state
representatives.
Emergency Responders Training Program educates first responders how to recognize
aphasia and communicate with people who have the condition
Aphasia Friendly Business Program trains businesses and their employees how to interact
with customers who have aphasia.
The Aphasia Handbook: A Guide for Stroke and Brain Injury Survivors and Their Families
Aphasia can occur in people of all ages, nationalities, socio-economic backgrounds
and equally among men and women. Understanding, patience and a few commonsense strategies
will help family, friends, caregivers and the public communicate with people with
aphasia:
1) Have the person's attention before you speak.
2) Minimize or eliminate background noise (TV, radio, other people).
3) Keep your own voice at a normal level.
4) Keep communication simple, but adult.
5) Give them time to speak, resist the urge to finish sentences or
offer words.
6) Communicate with drawings, gestures, writing and facial
expressions.
7) Confirm that you are communicating successfully with "yes" and
"no" questions.
Praise all attempts to speak and downplay any errors.
9) Engage in normal activities whenever possible.
10) Encourage independence, avoid being overprotective.
For more information, media outlets and the public can contact the National Aphasia
Association at (800) 922-4622 or (212) 267-2814.
Best wishes to everyone in the aphasia community,
Ellayne S. Ganzfried, M.S., CCC-SLP
ASHA Fellow
Executive Director
Barbara C. Martin
President- Board of Directors
