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Understanding Hearing Loss

Hearing Health Magazine (http://www.drf.org/magazine/35/Spring+2009+Issue/article/258)

Help Yourself Support Groups Put Hearing Loss into Perspective
By: Jan Christensen
 
Meeting regularly with others who are deaf or hard of hearing (D/HH) is an amazing, often lifechanging experience for almost every person I’ve encountered who has become involved in a support group for D/HH. Of course support groups have been around for ages but those for people with hearing loss are a more recent phenomenon, with the Internet providing much of the impetus and infrastructure for expansion.

Support groups provide two major resources to members: information and encouragement. In good support groups, members often remain involved after they have received most of the support they were seeking, so that they can pass on practical help and emotional support to others.

If you have never experienced being in a support group that uses every possible avenue to communicate, from pen and paper to looped room systems, to live captioning, to sign language interpreters, you are in for an amazing time. And if you join an online group and ask a question or two, you will be astonished at the welcome and caring responses. I recommend both getting on a list or two or three Internet groups, and also going to local get-togethers, chapter meetings and conventions, if your preferred group has them.

There are countless support groups, both online and in different locations, usually big cities. If you are interested in a “live†group and there are no chapters of the major groups in your area, check out the service center for people with hearing loss nearest you. Or start one yourself! With MeetUp (www.meetup.com) and Craigslist (www.craigslist.org), this is not hard to do.

Below are five major self-help entities for D/HH and a few other groups which, although not so much self-help groups as information or advocacy groups, might be of interest.

New support groups are forming all the time. If you belong to at least one of the groups listed, you will probably learn about others as they form. You can also search on Google or Yahoo if one particular aspect of hearing loss interests you.

Don't wait any longer to join a support group of some kind. Those of us who have done so already are often amazed at what we have learned, how many friends we’ve made and how much our lives have been enriched.
SUPPORT GROUPS

 

Hearing Loss Association of America
(HLAA)
www.hearingloss.org
Hearing Loss Association of America
7910 Woodmont Ave., Suite 1200
Bethesda, MD 20814
301.657.2248
$35 per year in the U.S., $45 in Canada and $60 overseas
Mission To open the world of communication to people with
hearing loss through information, education, advocacy and support.
HLAA provides cutting edge information to consumers,
policy makers, business professionals and family members through
their Web site, an award-winning publication, Hearing Loss, an online
newsletter, ENews, and message boards.
General Information
Advocacy: www.hearingloss.org/advocacy/index.asp
Many chapters: www.hearingloss.org/chapters/index.asp
Best Feature
Advocacy: HLAA has a long history of advocating for people with
hearing loss at state and federal levels.
Annual Convention
www.hearingloss.org/convention/index.asp
June 18-21, 2009, in Nashville, Tenn. The cost ranges from $319
for the full package, down to $150 for one day for individuals.
Publication(s)
Hearing Loss magazine, a benefit of membership.
Association of Late Deafened Adults
(ALDA)
www.alda.org
Association of Late Deafened Adults
8038 MacIntosh Lane
Rockford, IL 61107
Voice/TTY: 815.332.1515
Toll Free: 866.402.2532
$20-25 for individual membership
Mission To support the empowerment of late-deafened people.
ALDA is committed to providing a support network by sharing
members’ unique experiences, challenges and coping strategies;
helping one another fi nd practical solutions and emotional support;
and working together with other organizations for our common
good.
General Information
Several chapters: http://www.alda.org/chapterdirectory.php
Best Feature
Socializing with others who are hard of hearing, especially at the
conventions.
Annual Convention
Yearly: Oct. 14-18, 2009, in Seattle, Wash.
Publication(s)
ALDA News newsletter
SayWhatClub (SWC)
www.saywhatclub.com/aboutus.html
Mission Educating SWC participants and the public about all
aspects of hearing loss; providing for mutual sharing of coping
and life skills; reducing feelings of isolation, frustration and despair;
enhancing feelings of self-concept and optimism.
General Information
Their primary medium is a private (not Yahoo®) Internet group
of lists, which provide the opportunity for contacts over a wide
geographic area; access 24 hours a day, seven days a week.
Best Feature
24/7 contact with others online who are D/HH where any topic
can be discussed, whether related to hearing-loss or not. Their slogan
is: “We are more than our ears.†Online, they can “hear†what
everyone says and join in the conversation without worrying that
they didn’t hear correctly. And they can freely discuss everything
from the current news and recipes, to personal problems and the
occasional joke.
Annual Convention
August 5-8, 2009, Portland, Ore.
Publication(s)
OnLine Voices newsletter
Blog: http://ahearingloss.wordpress.com
Beyond Hearing
www.geocities.com/heartland/prairie/4727/bhframe.htm
Mission A place for anyone interested in hearing loss to share
ideas, ask (and answer) questions or fi nd support from other people
who have a hearing loss.
General Information
A Yahoo group (but you don’t have to belong to Yahoo to join) for
sharing information about hearing loss. Topics must be hearingloss
related.
Best Feature
Just the facts, ma’am. Here is where to go to get technical questions
answered about hearing equipment. If you don’t have time
for chit-chat or are not particularly interested in making friends
(although that is certainly possible, if you wish) with anyone or
everyone on a list, this is the place for you.
Publication(s) No regular publications, but some articles at this
link: www.geocities.com/heartland/prairie/4727/bhframe.htm.
Also, this group’s Web site has many links (called Web Support
Pages) and general information.
Alexander Graham Bell Association
for the Deaf and Hard of Hearing
(AG Bell)
www.agbell.org
Mission Advocating Independence through Listening and Talking!
General Information
Helps everyone understand childhood hearing loss and the importance
of early diagnosis and intervention. AG Bell uses advocacy,
education, research and fi nancial aid to help all children and adults
with hearing loss to listen, talk and thrive in mainstream society.
Chapters are located in the U.S. and there is a network of international
affiliates.
Best Feature
Emphasis on children with hearing loss to become oral speakers.
(This is controversial, but if it is your goal for your child, this is the
organization for you.)
Biennial Convention
Info for 2010 not up on the Web site as yet. To get an idea of what
they offer, visit the 2008 convention page on the
Web site: http://www.agbell.org/DesktopDefault.aspx?p=Convention.
Publication(s)
Volta Voices, a bimonthly publication, a benefi t of membership.
The Volta Review has articles on the latest hearing loss research.

OF NOTE
bhNews
http://health.groups.yahoo.com/group/bhNEWS
bhNews is run by Bob MacPherson on Yahoo, a free service that
allows anyone to create a listserves on any topic. Bob spends hours
every day looking for news items related to hearing loss. He posts
those items (or links to them) on bhNEWS. Most of the posts are
news items posted by Bob but subscribers may post messages too.
Members’ posts may be additional news items or comments on
previous posts.
Hearing Loss Web
www.hearinglossweb.com
Provides information on medical topics, resources, and technology,
and events related to hearing loss on their Web site. A newsletter
will be sent to your e-mail account if you subscribe: Send an
empty e-mail to: HOH-LD-News-subscribe@yahoogroups.com.

American Tinnitus Association
www.ata.org
Their mission is to “cure tinnitus through the development of resources
that advance tinnitus research.â€

National Association of the Deaf (NAD)
www.nad.org
“As a nonprofit federation, the mission of the NAD is to preserve,
protect, and promote the civil, human and linguistic rights of deaf
and hard of hearing individuals in the United States of America.â€

DeafDigest
www.deafdigest.com
A free e-mail newsletter distributed nationally each weekend. Deaf-
Digest features deaf-related employment ads, news of import to the
Deaf, political cartoons, interpreter humor stories, and more.

SayWhatClub
The SayWhatClub is here when I need it with access to the support, concern and knowledge of people who have walked a path similar to mine. They know my frustrations, challenges and needs because they have them too. Online, friends are made, questions answered, problems and coping strategies shared. I found that I was not the only person struggling with hearing loss and that there
is help and understanding available. A friend who understands is only as far away as your computer.

SayWhatClub involves the whole person. The connection is hearing loss, but life itself is often the subject, with its many aspects shared, questions asked and answered, and humor often inserted. I’ve also met members face-toface at annual conferences.

As a longtime member of SayWhatClub, I’ve found it a life-changing experience. It has given me courage, friends, coping strategies, confi dence and a sense of belonging to a group of remarkable people who always seem to understand. We mine each other’s knowledge of hearing loss experiences and how to cope, but also receive much support and advice in dealing with problems of life in general. Many world problems are solved and many hands held as we share online!
Dorothy Black, Ontario, Canada

SUBJECT SPECIFIC GROUPS

Large, Subject-Specifi c Groups for People with Hearing Loss

• Black Americans’ Deaf Advocacy: www.nbda.org/
• Captioning Advocacy: http://groups.yahoo.com/ group/Captioning
• Cochlear implant (CI) groups for adults: http://groups.yahoo.com/group/ci/
or, a bit less active:http://groups.yahoo.com/group/CIHear
• CI groups for parents of children with CIs: http://groups.yahoo.com/group/cicircle
• CI problems: http://groups.yahoo.com/group/ProblemCI
• Deaf and Blind: http://finance.groups.yahoo.com/group/Deafblindness
• Ear Deformities:
Yahoo® Online Support Groups http://health.groups.yahoo.com/group/AtresiaMicrotia/
For parents who have or are expecting to adopt a child with atresia-microtia
http://groups.yahoo/com/group/Atresia-Microtia-Adoption
Children’s Craniofacial Association, 800.535.3643, www.ccakids.org
Offers physician listings, educational resources, a newsletter, annual family retreat and
family networking opportunities.
• Jewish Deaf Congress: http://jewishdeafcongress.org/page/2
• Hyperacusis: www.hyperacusis.net
• Meniere’s Disease: www.menieres.org; http://health.groups.yahoo.com/group/copinglist/?v=1&t=search&ch=web&pub=groups&sec=group&slk=3
and http://health.groups.yahoo.com/group/menieres/ v=1&t=search&ch=web&pub=groups&sec=group& slk=1
(both very active groups – check their pages to
see how many posts you will get per month)
• Parents of D/HH Children: http://groups.yahoo.com/group/Listen-Up
• Parents of D/HH Children being schooled in
the mainstream: http://groups.yahoo.com/group/TheDeafMainstreamForum
• Seniors: Deaf Seniors of America (no e-mail list as
yet, but holds conferences): http://www.deafseniors.org/index.htm
• Service Dogs for D/HH: http://groups.yahoo.com/group/hearingdogteams/?v=1&t=search&ch=web& pub=groups&sec=group&slk=1 and http://groups.yahoo.com/group/Golden_Paw_ADC/?v=1&t=search&ch=web&pub=groups&sec=group&slk=29
• Usher Syndrome: http://health.groups.yahoo.com/group/Ushers
• Vestibular Disorders: www.vestibular.org/supportgroups.php