Nov 13 • 9M

When simple fixes aren't so simple

This month's editorial cartoon gets wheelchair repairs outside the box

 
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Shasta Kearns Moore
News, essays and insights on the experience of raising disabled children. Sign up for our free weekly newsletter at MedicalMotherhood.com.
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The second Sunday of every month Medical Motherhood publishes Where Is the Manual for This?!, an editorial cartoon by Lenore Eklund.

A four-panel line drawing cartoon titled Where is the Manual for This!? by Lenore Eklund. The first panel shows a girl in a wheelchair in the foreground looking startled with a “SNAP” next to a strap. A mother in the background holding a syringe set next to the sink looks over her shoulder in surprise. The second panel, the mom is in the foreground on the phone while the girl lays on her side on a couch. The mom’s speech bubble reads “Four weeks for a repair!? It’s a wheelchair! How is she supposed to get around?” The third panel is the mom looking determined, pushing the wheelchair and pulling a wagon with her daughter in it, past a sign that reads “Bicycles: Repair - Used”. The fourth panel show the mom clasping her hands and smiling while the daughter also smiles from her wagon. A staffer in a ball cap kneels next to the wheelchair and says “That’s no problem. Won’t cost you anything either. Do you have ten minutes to wait?”

It’s pretty amazing how creative people can get when their medical equipment needs fixing NOW but our systems aren’t set up to move quickly. We currently have a range of fasteners, zip-ties and rubber bands holding various pieces of our son’s wheelchair together. And the battery that our wheelchair supplier said would take a week actually took six. Just another day in a dysfunctional health care system, but thank goodness there are creative and kind-hearted folks able to help.

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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 Star Tribune (Minnesota) via Disability Scoop: “For Kids With Severe Behaviors, Hospital ERs Increasingly Becoming De Facto Homes

MINNEAPOLIS — A distressing situation is unfolding inside the emergency department of Ridgeview Medical Center in Waconia, where a 10-year-old boy with severe autism and aggression has been confined for seven months.

Foster and group homes can’t handle him, so county guardians keep sending him back to the ER, the one place obliged by law to take him in. Without schooling or specialized therapy, the boy and staff are stuck in a cycle of confrontation. Run-ins with nurses, support staff and security guards have compelled some workers to quit and left others bruised and injured.

[…]Children’s Minnesota is opening an inpatient psychiatric unit in St. Paul next month. However, [Ridgeview chief executive Mike] Phelps said the expansion and recent state mental health investments don’t really address this population of kids. More specialized residential treatment and group home facilities are needed, and more staffing is needed to maximize the use of facilities that already exist.

“I can appreciate building inpatient psychiatric beds — that’s great — and investing in outpatient mental health services,” he said. “But this is in between that and it’s a subset of kids who just don’t have a place to go.”

• From The Herald News (Massachusetts): “Poor communication, dismissive staff: Swansea parents air concerns about special education

SWANSEA (Massachusetts) — Parents and family members of disabled students are alleging that Swansea Public Schools has systemic flaws in its special education department, including a culture of poor communication with parents, a tendency to separate special education students from their peers and decisions that amount to discrimination against disabled students.

“This is not a request. This is his right as a human being,” said Melyssa Looker, a mother of a 3-year-old special education student who spoke during the meeting.

The School Committee held a special meeting on Nov. 7 to allow parents and other family members to raise concerns about the special education department.

Several family members relayed that schools at times do an insufficient job of communicating with families and that families have been dismissed and shut down during discussions with school staff about their children’s needs.

“Parents are not treated as experts on their own children… staff who spent two hours with them are,” said Wendy Looker, who spoke on behalf of her grandson.

[…Mother Christine] Aguiar echoed a theme that several other parents touched on, that families have had to maneuver major hurdles just to secure proper services for their children.

• From the BBC: “Lego: 8-year-old says new disabled character is 'amazing’

Sofia from Sussex was born without a left hand, and said she felt it was really hard to find toys that represented her.

Since she got in touch with Lego, the company have now released a new range of characters of different skin tones, cultures, physical and non-visible disabilities, and neurodiversity, including characters with arm and leg differences, Down Syndrome, anxiety, vitiligo, and a dog with a wheelchair.

A designer director at Lego Friends, the company behind the toys, said her team was "inspired" by Sofia's letter, as well those from other children across the world.


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