Community Action Group

[turtlepins]

One of the primary reasons people that deal with incontinence are overlooked, don't receive proper respect in medical treatments, hospitals, and in other arenas is because we are quite literally a silent community. We don't like to talk about our condition for several reasons. Often we fear what others may think (though why we should is beyond me). Still, I do. My preference of gauze diapers is often looked upon as infantile. No one considers the fact that I'm allergic to disposables, I've had horrible experiences with catheters and urinary tract infections, and most importantly that I prefer diapers to all other treatment methods.

I work with community networks and with the county and have learned the power of community action groups. Community action groups are just normal people that are bonded together by an issue that needs to be addressed. One community action group got a freeway exit that emptied out facing an elementary school closed. Another banded together to drive drugs out of their neighborhoods, and led by a gutsy woman principal approached gangs and begged them to leave their neighborhood for the sake of the children. The Principal actually got some of the gang members involved in the discussions! I see these action groups all the time, and have even facilitated some.

I live in the Antelope Valley, and I know in our 2300 square miles of geographical territory there are many incontinent people. I'm considering facilitating a community action group for the sole purpose of educating the public, politicians, and medical groups what our lives are like. We are not necessarily disabled by our condition. Many of us work in professional fields. So here's the question: Who would be interested in meeting together to discuss our options as a community action group, volunteer to help get the word out, and participate on a regular basis?

I hope many will respond, and I'd be delighted to help others facilitate similar groups in their communities. Please let me know your thoughts.

[turtlepins]

My preference of gauze diapers is often looked upon as infantile.

Ya think! I may have infantile issues, but I'm still able to do my job and contribute to my community! This action group would be very kind and accepting of all our incontinent ABDL friends!

[DailyDi]

You should post this to incont.org as well where our non DL incontinent friends are!

[diaperpt]

Not to clog up this thread with replies that are not directly helpful, but this is a wonderful idea. I'm not incontinent, but through my attraction to diapers, I've been 'educated' by those here who are. I have the greatest respect for people like Angela, Turtlepins and others who face their incontinence head-on. I hope that Turtlepins is able to get some meaningful support here - and from whatever other sources - in order to make headway with this cause.

Hopefully, it can make a meaningful difference in the lives of those who wear diapers for medical necessity (or simply for preference over other options). It is a shame that wearing a diaper is perceived so negatively by most people in society. And it goes almost without saying that if an advocacy group can put a dent in that negative perception for those who deal with incontinents, it can only help but serve the ABDL community as well. Still, I say this, not in the hopes of that coming about, but in support of Turtlepins efforts.

Living on the East Coast and being a continent, closeted diaper wearer (not even my wife knows) puts me in a position of not being capable of any significant support. I did want to speak out in support of Turtlepins ideas - if anyone here can help get this idea moving, I suspect Turtlepins is at least one person who can! Hopefully others in Turtlepin's area will join with him to make a difference.

Good luck and keep all of us here at dailydiapers informed!

[turtlepins]

You should post this to incont.org as well where our non DL incontinent friends are!

Shall do! Thanks. I'm part of that too.

[turtlepins]

This sounds like something that Angela Bauer would love to get involved with as well, since she is here in the LA area.

I too would like to toss my hat in, if possible. Since I am local (los Angeles area) I'm not an incon, but I think you have read enough of my posts on the topic to get an idea of where my ideas are. Let me know what I can do to help

qwack

Thanks duckie!

[turtlepins]

Not to clog up this thread with replies that are not directly helpful

Just being supportive helps loads! Never underestimate your ability to bring a smile to someone's face! Thanks.

[steve in diaps]

Hi Turtlepins, I think its a great idea, I wish we had something like that in MO. I have started to look for jobs and find many ways to srceen people out of jobs for disabilities, Impairments, Medical issues. I wish you luck, not sure I can help but open to chat about it.

[Angela Bauer]

Hi TurtlePins, SquareDuck, DailyDi and Everyone,

Sorry I am just now responding to this vital topic.

My experience is that I have not personally been marginalized or mistreated as a result of my own profound urinary incontinence. Perhaps this is a result of my Granny Vi being so pro-active starting in the 1930s. My Mom Alice and her sister Betsy started actively asserting their rights when they were still teenagers in the early 1950s.

When Cheryle Gartley founded the Simon Foundation for Continence her primary mission was to sweet-talk the powers that be to treat incontinence with respect. TurtlePins is sophisticated about social activism. Clearly he has been mistreated as a result of his own incontinence. That is so wrong and totally not fair.

Everything about incontinence is a royal challenge. The fine line needed when promoting awareness of the problems facing incontinent people is that unfortunately people with bladder and bowel control avoid thinking about not having their control. Just think what the Attends and later Depend sales and marketing professionals went through. I have often tried to imagine the conversations to persuade June Allyson to make those pioneer Depend TV commercials, using her considerable good will from her years playing innocent sweet teens and sincere supportive wives in all those movies.

Right now the USA Americans with Disability Act does not automatically protect every person who is incontinent. Instead, ADA does protect many of the common underlying medical conditions that result in incontinence. This does leave some of us on our own to arrange appropriate accommodation in employment and other situations.

Perhaps the best thing to happen for urinary incontinence after the marketing of competitive brands of disposables for adults has been the constantly growing number of women physicians specializing in urology. As recently as 20 years ago hardly any women were into urology, except as nurses. Then Stanford and Johns Hopkins began accepting women into urology residency programs. Along with these women urologists have come increased productive research. Historically urology specialized in the problems of men, with incontinence hardly considered. These days many communities have "continence" medical practices.

My suggestion is that all incontinent teens and adults start by sharing their concerns with the staff at their urologist and other physicians. Many gynecologists are cross-training in urology. Same goes for pediatricians who treat juveniles and adolescents. Most incontinent people do these days buy disposables on-line in case quantities since our rate of usage is predictable. The downside is local stores are mostly selling to people with temporary incontinence, hence the decrease of shelf space and selection. Maybe what we need to do is send polite letters to the powers that be in the store chains, as well as individual store managers. I use the scheduled pre-order system with my supplier of adult disposables. Every couple of months I do send them an e-mail encouraging them to lobby for expanded disposable coverage, which is probably second-nature to them. Still preaching to the choir is important.