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Nigerian Times

Saturday, June 04, 2011

Ninth World Congress for people who stutter or stammer
By Mike Mabika

Ever had an encounter with people who stutter? Well, I stutter or stammer a lot and I would like to share with you some of my thoughts after I attended the ninth Congress of people who stutter or stammer last month in Buenos Aires, Argentina. I am also the founder member of the Stuttering Association of Zambia. I was fortunate to attend this very important conference for people who stutter. A lot of people who stutter from so many different parts of the World attended the congress. Also present were speech therapists, parents of children who stutter, members of the public, researchers with the view of sharing ideas and learning more about stammering. The theme or the objective of the congress was to give more awareness to the public regarding stuttering as the Americans call it or stammering as the British call it. In our local Nyanja stammering is known as Chibwibwi. Stammering or Stuttering is a speech disorder or speech disability if you like. While the spoken language is taken for granted by most, the use of spoken language is a big challenge for the millions of people who stutter around the world. It is estimated that one percent or 70 million of seven billion people with whom we share this world stutter. That implies that about 130,000 Zambians from the current population of 13 million stutter. From time immemorial people who stutter have often been misjudged as fools and figures of ridicule in our society. Literature, film and television have repeatedly intensified these wrong, one sided and distorted views. Some of our very own Zambian musicians have sung songs that make fun of people who stammer. In 2000 the International Stuttering Association (ISA) published The Bill of Rights and Responsibilities for people who stutter which provides a framework for building a humane, just and compassionate world for the millions of people who stutter. I am particularly saddened that most people in Zambia are totally ignorant about stuttering. They assume that stuttering is caused by nervousness, lack of confidence, fear, demons etc. Stuttering is caused by so many factors and some of these are very complex and each individual case is different from the other. Some of these causes are actually genetically related. Anyway the GOOD news to all my fellow stutterers is that an Association called the Stuttering Association of Zambia (SAZ) has now finally been formed. The objective of SAZ is to promote and educate the masses of our people on stuttering issues. Many thanks to the Zambia Agency for Persons with Disabilities (ZAPD) for acknowledging that stuttering is also a disability in accordance with the Persons with Disabilities Act No.33 section(b) of 1996 and also for acknowledging the importance of forming the Stuttering Association of Zambia under the umbrella of ZAPD. Persons who stutter in this country are stigmatised and marginalised and usually lead isolated lives because of such speech impediments. My other concern is mostly with children who stutter and are usually teased and in some cases even bullied by their friends because of their stuttering and unfortunately school for these Children is nothing but a nightmare. A child may soon become withdrawn and will not play an active role in discussion matters in class for fear of being laughed at when he or she stutters in an attempt to say something. In some extreme cases, some children who severely stammer have committed suicide because of harsh treatment from society. I would like to appeal to persons who stutter especially children and adults not to feel depressed or isolated but to think positively and not to let stuttering deter or hinder them from achieving their dreams. The first lesson to learn when you stutter is to accept that you stutter. That way you won’t feel so terrible when you stutter because you have come to understand and accept who you are. Some stutterers have actually received treatment from speech therapists especially at a tender age and have actually achieved more fluency. However most adults who stutter do not completely stop stuttering even after seeing a speech therapist but in some cases the stuttering may reduce to some extent. SAZ would like to see children who stutter to start enjoying and having a wonderful time at school in an environment where their classmates and teachers understand that they stutter and do not make them feel like they are second class citizens. Most countries especially in the developed world have the services of a speech therapist at each and every School to help children with such speech disorders. SAZ would like to see more training of speech therapists in our country. SAZ feels this move will help children who stutter and others with speech disabilities to receive appropriate treatment from properly trained and informed therapists. The school-age years represents a time during which children are the most vulnerable and therefore the influence and support of school personnel is key. Schools should respond in positive ways so that each child who stutters will realise his full potential within a safe and joyful environment. October 22 is designated as the Annual International Stuttering Awareness Day by the International Stuttering Association, so this year SAZ would like to see this event fully recognised in our country where people who stutter can come together and celebrate this auspicious occasion. Most stutterers at the Argentine conference agreed that self help groups are an effective avenue for people who stutter to meet and share ideas and see how best they can help one another. Another myth that I would like to dispel is that people who stammer have a very short temper. This is not true. It’s only that when a person who stutters wants to express him/herself where other people seem to oppress them, by virtue of stuttering, others feel that we become violent. But there are no cases where people have proof that we become violent and injure others. If you are a person who stutters and would like to be part of the self-help group, please send me an email. Remember you have a Voice and you have a right to be heard. Write to: stutteringz@gmail.com

 

Newspaper Articles on Stuttering/Stammering February 22, 2010

The following paper is taken from NEJM (India) journalResearchers Discover First Genes for Stuttering

Findings suggest common speech problem, in some cases, may actually be an inherited metabolic disorder
Stuttering may be the result of a glitch in the day-to-day process by which cellular components in key regions of the brain are broken down and recycled, says a study in the Feb. 10 Online First issue of the New England Journal of Medicine.
This is a very exciting discovery , said National Stuttering Association (NSA) Chairman Ernie Canadeo. “It validates our view that stuttering has a genetic component, and that people who stutter can’t help it. Its part of their genes.  I am proud that our organization and its members particapted in this important study.”
The study, led by researchers at the National Institute on Deafness and Other Communication Disorders (NIDCD), part of the National Institutes of Health, has identified three genes as a source of stuttering in volunteers in Pakistan, the United States, and England. Mutations in two of the genes have already been implicated in other rare metabolic disorders also involved in cell recycling, while mutations in a third, closely related, gene have now been shown to be associated for the first time with a disorder in humans.
The study provides further evidence that stuttering is not a behavioral disorder but has as its origins, genetics manifesting in abnormal neuronal activity. We have learned much recently from brain imaging and pharmacologic studies that stuttering is associated with abnormal neurophysiology–how this relates directly to lysosomal function is an area which we definitely need to research further, said Gerald A. Maguire, M.D. Associate Professor of Clinical Psychiatry Kirkup Chair in Stuttering Treatment, Senior Associate Dean, Educational Affairs, University of California, Irvine School of Medicine.
“For hundreds of years, the cause of stuttering has remained a mystery for researchers and health care professionals alike, not to mention people who stutter and their families,” said James F. Battey, Jr., M.D., Ph.D., director of the NIDCD. “This is the first study to pinpoint specific gene mutations as the potential cause of stuttering, a disorder that affects 3 million Americans, and by doing so, might lead to a dramatic expansion in our options for treatment.”
Stuttering tends to run in families, and researchers have long suspected a genetic component. Previous studies of stuttering in a group of families from Pakistan had been done by Dennis Drayna, Ph.D., a geneticist with the NIDCD, which indicated a place on chromosome 12 that was likely to harbor a gene variant that caused this disorder.
In the latest research, Dr. Drayna and his team refined the location of this place on chromosome 12 and focused their efforts on the new site. They sequenced the genes surrounding a new marker and identified mutations in a gene known as GNPTAB in the affected family members. The GNPTAB gene is carried by all higher animals, and helps encode an enzyme that assists in breaking down and recycling cellular components, a process that takes place inside a cell structure called the lysosome.
They then analyzed the genes of 123 Pakistani individuals who stutter-46 from the original families and 77 who are unrelated-as well as 96 unrelated Pakistanis who don’t stutter, and who served as controls. Individuals from the United States and England also took part in the study, 270 who stutter and 276 who don’t. The researchers found some individuals who stutter possessed the same mutation as that found in the large Pakistani family. They also identified three other mutations in the GNPTAB gene which showed up in several unrelated individuals who stutter but not in the controls.
These findings will help with early identification of stuttering so children can get the therapy and support they need at an early age, which can often lead to a better outcomes”, said John A. Tetnowski, Ph. D, CCC-SLP, Director of Communicative Disorders, University of Louisiana at Lafayette and an NSA Board Member.
Dr. Drayna and Dr. McGuire gave presentations, moderated by Dr. Tetnowski, at the National Stuttering Association Research Symposium in Arizona last year and are scheduled to present the implications of these new findings on people who stutter at the NSA Conference and Research Symposium in Cleveland this July. Over 600 people who stutter, their families, speech language pathologists, and others interested in stuttering typically attend the conference each year.
Stuttering is a speech disorder in which a person repeats or prolongs sounds, syllables, or words, disrupting the normal flow of speech. It can severely hinder communication and a person’s quality of life. Most children who stutter will outgrow stuttering, although many do not; roughly 1 percent of adults stutter worldwide. Current therapies for adults who stutter have focused on such strategies as reducing anxiety, regulating breathing and rate of speech, and using electronic devices to help improve fluency.
The National Stuttering Association is a non-profit organization dedicated to bringing hope and empowerment to children and adults who stutter, their families, and professionals through support, education, advocacy, and research. It is represented by over 100 local chapters and support programs for children, families, teens, and adults throughout the United States. It was established in 1977.
July 1, 2007
Stopping Stuttering
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