The holidays come with tangles for medical mamas
Plus: Parents with spina bifida adopt child with same condition; CA bill would make rape of a disabled child a violent crime; 'Wicked' producers ensured disability was visible and natural
Lenore expertly captures the juggling act many parents of medically complex kids experience. The tangle of holiday lights is a perfect metaphor for medical motherhood — the mix of joy, chaos, and constant awareness of medical equipment like g-tubes. This time of year often comes with extra layers of logistics — a good sense of humor and an acceptance that some things are just going to look different can help to keep things merry and bright. While it may take some extra patience to "get festive," the effort will show how these little moments of connection are worth the challenge. Do you have any holiday stories to share of your medical motherhood?
On the second Sunday of every month, we feature Where is the Manual for This?!, an editorial cartoon about the medical mom life from Lenore Eklund.
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Medical Motherhood’s news round up
Snippets of news and opinion from outlets around the world. Click the links for the full story.
• From The San Joaquin Valley Sun (California): “Lackey introduces bill to classify rape of disabled child as violent felony”
A new bill would classify the rape of a developmentally disabled minor as a violent felony.
Asm. Tom Lackey (R–Palmdale) introduced Assembly Bill 38 this week to increase penalties on sexual predators.
[…]Violent felonies in California include rape by force, violence, duress, menace, fear and by threat of violent retaliation as violent felonies. State law does not consider the rape of a person unable to give consent due to disability, rape under false pretenses or rape accomplished by threat of incarceration, arrest or deportation to be a violent felony.
[…]A report by the Bureau of Justice Statistics found that from 2017 to 2019, people with disabilities were victims of rape and sexual assault over four times higher than people without disabilities.
[…]Lackey said California’s leadership has repeatedly turned its backs on the state’s most vulnerable children, adding that protecting the vulnerable should not be partisan. “These children cannot speak for themselves, but their suffering necessitates action,” Lackey said. “It is our moral duty to act.”[…]
• From Good News Network: “Adoption Approved for Couple with Spina Bifida who Lovingly Adopt Daughter With Same Condition”
Larry and Kelly Peterson first met when they were just 10 years old at a Spina Bifida camp where they discovered they were born on the same day.
After dating in high school, they lost contact for 10 years, but they reconnected on social media and fell (back) in love. In 2015 the Indiana couple got married, and decided to pursue adoption so they could raise a family.
[…]Thanks to Special Angels Adoption, the Petersons got their daughter. The couple knew they were ready to parent Hadley because of their deep understanding of the issues she is facing—and will face in the future.
So far, parenting has been both joyous and challenging. They have basked in the happiness of seeing her personality develop and watching her hit milestones. Even though Kelly has extensive experience with children with disabilities, due to being a special education teacher for over 20 years, being a parent is a whole different ball game.
[…]Now, the couple wants to be a resource for other adults with Spina Bifida who are hoping to adopt. They want to help alleviate stigmas and negative stereotypes regarding disability and parenting, and also be available to any parents who recently received an SB diagnosis in the family.
They run a Facebook page called Journey Down a Country Road: Spina Bifida + Adoption= Our Family, for people to ask questions or seek support on topics such as adoption and parenting. […]
• From The Wrap: “‘Wicked’ Had a ‘Very Intentional’ Commitment to Amplify Disabled People From First Days of Production”
As “Wicked” cast wheelchair-user actress Marissa Bode in the key role of Nessarose, the filmmakers wanted to ensure that the representation onscreen was “very intentional” from the jump — which included showcasing wheelchair-friendly access points throughout the film’s elaborate production design.
[…Janine Jones-Clark, EVP, Filmmaker & Content Strategist for Universal Film Entertainment Group] said that this attention to detail continued throughout production, including having a disability coordinator on set.
“We did a screening of ‘Wicked’ and the individual who read the script from Disability Belongs was so excited when she saw suggestions that she made incorporated in the film. And the intentionality in representation goes across the board, because there’s was a disability coordinator on set, it was really important to [Director] Jon [M.] Chu, that visually, the way the set was designed, that the audience could organically see when Nessarose would navigate in a natural way,” she explained.
[…]According to World Health Organization (WHO), people with disabilities make up about 16% of the world’s population, yet per Geena Davis Institute’s 2024 GDI film study, “Charting Progress in Film Diversity,” people with disabilities only represent 2% of all characters in the family films that were released in 2023. Madeline Di Nonno, President and CEO of Geena Davis Institute, says overlooking or neglecting representation of people with disabilities will cost productions at the box office.
“People with disabilities are 20%, 25% of moviegoers, so you are leaving money on the table,” Di Nonno said.[…]
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