The Edibles: Removing Illness Stigma Through Open Source

Tonight I’m giving the fifth project in the Technical Presentations advanced manual at Toastmasters Groningen. This is also the tenth project to achieve the Advanced Communicator Bronze which will also give a point to the club for the year and allow us to achieve the President’s Distinguished Club award.

I’m super stoked.


I’m also going through some rough shit right now which means I’m embracing what’s happening and doing a very technical speech about current events. It could turn out boring and pedantic and emotional. Or interesting and brilliant. Or something.

These are the notes.

I. open source
The open source way is about applying the principles of open source software development beyond software. Beyond technology. is about sharing how the open source way can change our world in the same way the open source model has changed software.

Open exchange, Participation, Rapid prototyping, Meritocracy, Community

The Open Patient
Steven holds a Ph.D. in mechanical engineering from the Massachusetts Institute of Technology. After volunteering to have an MRI done as part of a scientific research project, they discovered a brain tumor. Since then, he’s advocated for sharing health data, including his brain scans.

Liz Salmi is a healthcare communications professional based in Sacramento, CA who dubs herself “the open source patient.” After a powerful seizure, Liz learned that a mass was growing in her brain, and she was diagnosed with Gemistocytic astrocytoma. She created her blog The Liz Army to share her experiences with brain cancer with the world, to support those going through similar experiences, and to advocate opening up health data.

OpenNotes is a national initiative to give patients access to the visit notes written by their doctors and nurses. Since 2010, it has grown from 100 doctors to thousands, and from 20,000 patients to 10 million.

II. illness stigmatism
Stigma of mental illness and ways of diminishing it by Peter Byrne

Stigma is defined as a sign of disgrace or discredit, which sets a person apart from others. The stigma of mental illness, although more often related to context than to a person’s appearance, remains a powerful negative attribute in all social relations. Originally printed in Advances in Psychiatric Treatment Jan 2000, 6 (1) 65-72; DOI: 10.1192/apt.6.1.65

The Spoon Theory written by Christine Miserandino is a personal story and analogy of what it is like to live with sickness or disability.

III. pregnancy story
Pregnancy at 20, 30, 40
The average woman between 20 and 24 years old has about a 20 percent chance each month of getting pregnant when she has unprotected intercourse. The miscarriage rate during these years is about 9.5 percent, the lowest it will ever be. Because your eggs are still relatively young, your baby is much less likely to be born with a birth defect such as Down syndrome (1 in 1,667 births among women age 20) or other chromosomal abnormalities (1 in 526 among women age 20). Yet more infants with these disorders are born to women in their 20s because those in this age group have more babies and women past 35 are more likely to be offered screening tests and may elect to terminate a pregnancy in which the fetus has a birth defect.

Ages 25 to 29
The miscarriage rate is 10 percent, only slightly higher than for women five years younger. At age 25, your chances of delivering a baby with Down syndrome are 1 in 1,250, and there’s a 1 in 476 chance of having a baby with any chromosomal abnormality.

Ages 30 to 34
Fertility begins to decline at age 30, but this change happens gradually, over the next five years or so. The miscarriage rate is 11.7 percent. By age 30 your risk of having a baby with Down syndrome is 1 in 952, and a baby with any chromosomal abnormality, 1 in 385.

Ages 35 to 39
Fertility continues to decline after age 35, and it takes a nosedive at age 38, says Benjamin Younger, M.D., executive director of the American Society for Reproductive Medicine, in Birmingham, AL. “The decline is due mostly to the fact that the woman’s eggs are aging, and they become more difficult to fertilize,” he adds.
The chance of having multiple births, especially twins and even triplets, increases significantly in your late 30s (and early 40s). “This is probably due to the fact that the hormonal stimulation of the ovaries changes slightly as a woman ages, increasing the chances that they’ll release more than one egg,” says Dr. Younger. “It could be Mother Nature’s way of compensating for the fact that more eggs are likely to be defective.”
The miscarriage rate rises after age 35 to close to 18 percent. Rates of stillbirths are about twice as high among older pregnant women than younger ones, according to recent studies, although the reasons are unknown.

Ages 40 to 44
A recent study shows that women over 40 who have babies without help from fertility drugs or other assisted reproductive technologies tend to live longer than those who don’t.
Fewer than 1 percent of women ages 40 to 44 have babies. The chance of becoming pregnant during any one month drops to only 5 percent after age 40.
About one-third of all pregnancies in women ages 40 to 44 end in miscarriage.
Risks of chromosomal birth defects rise steadily with each year into your 40s. If you give birth at age 40, your baby has a 1 in 106 chance of being born with Down syndrome and a 1 in 66 chance of being born with any chromosomal abnormality. But by age 44, those risks rise to 1 in 38 and 1 in 26, respectively.

Ages 45 to 49
The percentage of women who have babies in this age group is .03.
“Pregnancy, in a sense, is like an athletic event,” says Dr. Niebyl. “Blood volume nearly doubles, increasing the strain on your heart, and the extra weight puts some strain on your muscles and joints.”
More than half of all pregnancies in women over age 45 end in miscarriage (before 20 weeks gestation). Risk of stillbirth is doubled for women in their 40s, compared with those in their 20s; for this reason, many doctors perform more stress tests and ultrasounds in the last weeks of pregnancy in older women. The chance of chromosomal abnormalities increases sharply. At age 45, there’s a 1 in 30 chance of delivering an infant with Down syndrome and a 1 in 21 chance of having a baby with any chromosomal abnormality. In a 49-year-old those risks rise to 1 in 11 and 1 in 8, respectively.

Over 50
The average age for menopause is 51, but typically the range runs from 45 to 55.

IV. conclusion
Know the facts. Educate yourself about health problems.
Be aware of your attitudes and behaviour. We’ve all grown up with prejudices and judgmental thinking. …
Choose your words carefully. …
Educate others. …
Focus on the positive. …
Support people. …
Include everyone.

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