Let’s Get the Word Out About Aphasia
by Ellayne S. Ganzfried on December 1, 2011
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:
- Have the person’s attention before you speak.
- Minimize or eliminate background noise (TV, radio, other people).
- Keep your own voice at a normal level.
- Keep communication simple, but adult.
- Give them time to speak, resist the urge to finish sentences or offer words.
- Communicate with drawings, gestures, writing and facial expressions.
- Confirm that you are communicating successfully with “yes” and “no” questions.
- Praise all attempts to speak and downplay any errors.
- Engage in normal activities whenever possible.
- 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.
What Can You Do?
We are recommending to people that they go on-line and write to ABC directly.
http://abcnews.go.com/Site/page?id=3271346
ABC News Web Site Feedback
There is a drop down box for the show that you want to comment on. 20/20 is listed there.
If all the people who are passionate about increasing awareness of aphasia would write their comments re the omission of the word “aphasia” there, it should have a strong impact. You could post this information on your Facebook page ( if you have one) or comment on the NAA posting. It is important that ABC hear the comments and not just the people who are already aware of the issue.
We are grateful to Dr. Nancy Helm- Estabrooks for her support and guidance in this matter.
Let’s make our voices heard!
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
Reader Comments
Thank you for writing this. Can you also post this on your website?
Also, the NAA should start a twitter feed. New media can be powerful!
-Grace Carpenter http://myhappystroke.blogspot.com
A similar tragedy occurred recently at Occupy Oakland when the police launched a tear gas canister into the head of protester Scott Olsen, leaving him unable to speak. Below are two links to videos; one includes the attack itself, and the second shows a longer interview with Scott a month later. (His recovery is amazing!) Again, you will notice that the word "aphasia" isn't used in either clip.
Short news segment that includes police attack on nonviolent protesters and interview with Scott: http://www.youtube.com/watch?v=sbsb3pJEmMA&li...
Longer interview with Scott about a month after his injury: http://www.indybay.org/newsitems/2011/11/28/18701...
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