Diabetes at school is tough to manage, no doubt. From changing school nurse policies, fighting for compliance with 504 plans, to educating teachers on D-devices and D-needs to preventing other kids from embarrassing or even bullying kids and teens with diabetes, there's a lot to grapple with -- anywhere you might live in the world.
That's why we are happy to hear about Deb Snow in Berkshire, UK, a type 1 since May 1995 who's using her media teaching background to not only teach film-making skills to teenagers, but to also help those with diabetes reach out to other teens who might need it and raise awareness among the general public. Particularly for schools.
She's launched a diabetes film project via her charity org Action Media, along with her husband, professional cameraman and filmmaker Phil Eastabrook. Their first film segments were created last fall and more are underway. Deb says the project not only gives teens with diabetes new and transferable media-production skills, but also offers them a chance to share and learn from others' experiences.
"I wanted to do something positive and not just have bad news stereotypes of teenagers," Deb said. "I wanted to give people a voice."
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We were intrigued to learn more about the Action Media diabetes film project, and are excited to bring you this account today from Deb's 21-year-old daughter Clara (one of four kids in their 20s, none of whom have diabetes). She's been involved in the film school project from the start.
A Guest-post by Clara Maciver
Deb is my mother, so her story and mine are obviously intertwined. She was diagnosed 20 years ago with type 1 diabetes, a few months after my twin sister and I were born. She also became a teacher not long after being diagnosed. As with most people, she found being diagnosed quite a shock and was subsequently bombarded with vital information about how to control her diabetes.
As a teacher too, my mum noticed that there was not enough being done in schools to support young diabetics so recently decided to set up a peer-to-peer support network for diabetics in her local area.
Last October, my mom identified eight young PWDs ranging in ages from 12-17 years through Diabetes UK (our equivalent of ADA) and gathered them in Berkshire for a week to share their stories and vent their problems in a film-making workshop where they made a series of informative videos about what it's like living with diabetes. This is the first workshop of Action Media, and the charity's motto is: "Using the media for social change." Participants spent a week focusing on creating a selection of informative videos on life as a diabetic teenager. The onus is on the teens to create the films themselves so they can learn the ins and outs of film-making whilst discussing their condition in a non-medical environment with their peers.
The aim is to provide these films for free to teens online (open access!), and also hopefully encourage schools around the country and even official organizations like Diabetes UK to use them as a resource and share them widely.
Here's what my mum says: "When you are first diagnosed with diabetes it is a daunting and overwhelming experience. By sharing stories and experiences you can let off steam and also learn ways in which others manage their condition, which has a positive impact on your physical health. Moreover, talking with individuals with the same condition reminds you that you are not alone and that it is possible to live a normal life."
This is one of our videos that features my mum, talking about the project:
The films made by the teens focus on the daily life of a diabetic. For example, one film demonstrates the benefits of dog walking as a form of exercise that brings your sugar levels down, and in another, two teenage girls are on a shopping trip choosing a variety of food and drinks. In the middle of the week, the whole group of teens headed off for a gluttonous afternoon tea where they were presented with a stack of sandwiches and cakes to enjoy. The whole afternoon is filmed, so the young PWDs can show how their condition affects the simplest of affairs -- like enjoying food. As you might expect, most of the food offered at their afternoon tea is packed up and taken home to snack on later, as the carbohydrate content would send their glucose levels soaring if eaten all at once.
Phil also conducts a one-on-one interview with each of the teens. A number of themes are recurrent -- teens having their glucose meters confiscated at least once by teachers, who believe they are mobile phones; and the constant fight of a stigma attached to injecting in public places like schools. It is clear that on the whole there is a lack of understanding or support from schools which can lead pupils to feeling isolated and stigmatized.
One of the featured teens, 14-year-old Oliva, talked in her interview about how society is misinformed and often unaware about what it's like to live with type 1. She struggled terribly to adjust after her diagnosis two years ago, feeling too shy to check her sugar or inject in glass and being forbidden from eating in class. As a result, she suffered many hypos and highs while at school.
Here's another video from 15-year-old Kirsty about diabetes in school:
The topic of diabetes in school is a touchy but newsworthy one in the UK, just as it is for many in the United States. Just about the time we were creating these first films last fall, the British Parliament agreed to legislation that requires schools to provide more support to pupils suffering from long-term health conditions. The change came after lobbying from Diabetes UK and other advocacy groups.
This amendment to the Children and Families Bill will be accompanied by statutory guidance which will help schools understand what they need to do and how to do it. The new measures will not only affect the 15,000 pupils with type 1 diabetes, but also those who have other health conditions including epilepsy and asthma. One million children and young people with long-term health needs are set to benefit from the new measures.
During the film workshop, the teens all agreed that the new legal duty placed on schools has the potential to positively impact their school life and they are hopeful that it will be a way for others to avoid the problems they've encountered at school.
Kirsty's mother Michelle thinks the workshop was beneficial and summarized it this way: "Aside from visits to the clinic, there is very little support network for young diabetics. A few general health support networks do exist but most of them cost a bomb. This workshop is the first time that Kirsty has not been the only diabetic in a group which I think has been really helpful. It's nice to not be the only one pricking your finger and its nice being able to eat the same food as everyone else."
And Kirsty herself summarized her feelings at the end of the film week: "It was great to meet other diabetics like myself. I've made new friends and learned a new skill all whilst helping other people learn more about my condition. I want my teachers to see the films. I want my family and friends to see the films. I want everyone to see the films. I want everyone to understand."
Thanks for sharing all this, Clara. We love the concept of activating teens, and are heartened to hear that Parliament is taking much-needed action. Looking forward to seeing the next round of films later this year!