Celebration of the the launch of Simon's
third decade –
for a stigma free world
Photo: Christine Norton and Cheryle Gartley
“Our mission is to bring the topic of incontinence out of the closet, remove its stigma, and provide help and hope to people with incontinence, their families, and the healthcare professionals who provide their care” says Cheryle B. Gartley, President and Founder of the Simon Foundation. “We are proud to celebrate the launch of Simon's third decade with three groundbreaking events, An academic conference on the Stigma of Incontinence: A Town Meeting on Stigma and the first black tie event in the United States to promote continence” she says.
The international conference was held in Chicago June 25 - 27, 2003. It draw upon the knowledge from many disciplines such as health psychology and medical anthropology, to better understand how stigma can be removed from incontinence, both as an individual issue and as a cultural norm. The conference was co-chaired by Alan Cottenden, PhD.(U.K.), Professor Christine Norton (U.K.), Anita Saltmarch, RN, MSN (Canada) and Cheryle Gartley (U.S.) The conference was hold in co-operation with the International Foundation for Functional Gastrointestinal Disorders.
One goal of the conference is to motivate more individuals to seek care rather than hiding in shame in their homes.
The Town Meeting on Stigma was moderated by Martha A. Teichner of CBS's Sunday Morning.
In the magnificent gala, participants from Germany, England, Canada, Australia, Sweden and from all across America joined to celebrate the launch of Simon’s third decade. During the evening the first Simon Foundation anti-stigma awards were presented. The winners of the awards were Neil Resnick from Pittsburgh in the US and Christa Thiel from Kassel in Germany. The awards are recognition of their efforts in erasing stigma. At the gala Gaia and Ed Tossing launched the first song for a stigma free world,”I am more”. The audience really did enjoy the song. It's definitely not every day such a fusion between a voice and a sign language happens in a song. A great performance.
The events also offered opportunities for networking and interchange of information about continence awareness and promotion activities between a numbers of national continence organisations. David Fonda, co-chair of the Continence Promotion Committee of the International Continence Society, addressed the subject on how to fighting stigma through global continence promotion and he highlighted the contributions from both Cheryle Gartley and Christine Norton in this work.
information on the events is available at www.simonfoundation.org
Below please find a summation of some of the presentations of the conference:
Cheryle B. Gartley, Founder of the Simon Foundation started the conference with "Living with Guiqqles". She spoke of the individual that has the ability to pass, that is to enter into society as a "normal" individual. This ability is not without expense, however. It leads to all sorts of dilemmas regarding information control. The agony of deciding with new social contacts, or old ones for that matter; who to tell, when to tell, to lie or not to lie, and the constant awareness that at any time the choice may be taken out of your control. The concept of passing is very relevant to incontinence, or rather to "social continence." Social continence, the ability of an individual to remain dry in public, often by the use of drainage systems or absorbent products, allows the individual to pass in society. However, the fear of an "accident" in public is a twenty - four/seven life companion.
Nancy Norton, Founder and President, International Foundation for Functional Gastrointestinal Disorders spoke of the challenges she has faced with fecal incontinence for 18 years due to an obstetrical injury. Her thoughts are that Stigma's may be influenced by family background, economics, culture , education and previous illness experience.
Another speaker was Steven M. Tovian, Ph.D at the Evanston Northwestern Healthcare, Northwestern University Medical School in Evanston, Illinois. He stated that Urinary incontinence is experienced by over 13 million people in the United States. It is estimated the annual cost of urinary incontinence products for the elderly alone is over $11 billion annually. The cost to body image and psychological functioning is beyond calculation.
Dr. Julian M Stern, Consultant Psychiatrist and Psychotherapist at St. Mark's Hospital in Harrow, England spoke of the sorrow and shame associated with incontinence. He presented three case studies of his patients that experience incontinence. Of the three patients he described, there were terrible anxieties, shame and humiliation associated with their incontinence. Dr. Stern feels that the approach to reduce stigma must take place on multiple levels simultaneously: on the individual, micro level, helping particular individuals to feel less ashamed and stigmatized, such as the individual work with patients which he described: helping their careers-both professional and family members to confront their own prejudices and fears: and on a broader level, tackling stigma and prejudice in society, be it at schools, at the workplace, in hospitals and in institutions of learning, religion and recreation.
Sharon Tennstedt Ph. D, RN from the New England Research Institutes in Watertown, MA spoke of factors influencing funding of research by the National Institutes of Heatlth(NIH). NIH uses five major criteria for the allocation of research funds: Public health needs, the scientific quality of research, the probability of success, the maintenance of diverse research portfolio, and the maintence of adequate scientific infrastructure. First, only scientific rigorous research with a high probability of success should be funded. Second, NIH's role in building and maintaining the scientific infrastructure for health research in this country is part of its federal mandate. However, it all comes down to how "public health needs" are defined and measured. Also it is interesting to note that private industry funds at least twice as much biomedical research as does the NIH in the United States.