It seems like nearly every day I learn something new about diabetes. With social networks enabling so many conversations, and with today’s search engines indexing an overwhelming amount of information, it’s quite easy to locate what one may be looking for. Recently, while looking for content ideas related to the history of diabetes – a now vs then approach if you will – I found one very critical way diabetes has changed over the years: its protection under the law.
A person who has seen diabetes protections change dramatically is Crystal Jackson with the American Diabetes Association (a.k.a. the Association). She leads the Association’s Safe At School campaign and has been one of the strongest advocates in the diabetes community in ensuring students with diabetes receive the protections they are ensured under the law and in getting new laws passed to protect the rights of students with diabetes.
While Crystal’s professional work is quite inspiring, her personal story and how she came to work for the Association moved me on a very profound level. It’s amazing how Crystal’s struggle led her to work on behalf of students with diabetes across the country.
Crystal’s daughter Devin was diagnosed with type 1 diabetes at the age of 17 months while the family was living in Bucks County, Pennsylvania. Crystal, a paralegal by profession, was also a volunteer with the Association. It wasn’t until Crystal, Devin and their family moved to Virginia, in the Washington D.C. metro area (before Devin entered third grade), that Crystal realized the school wasn’t prepared and quite unwilling to care for a child with diabetes.
“We found out no one would be available besides the nurse to give Devin a glucagon shot and the nurse was only there for 2-3 hours every Wednesday morning,” Crystal said. “At that time, Devin had been running very low [blood sugar levels] and had experienced a couple of severe hypoglycemia episodes that required glucagon. The fact that the school was unwilling to train anyone else to help care for Devin was unacceptable to me.”
Not having much knowledge of civil rights laws and the protections they afford kids with diabetes, Crystal sought out other parents of children with diabetes throughout the state who worked with policy makers and the state legislature to understand the school’s legal obligations to meet the needs of these students as required by law.
“I called the Association and, with their guidance, we worked with a state senator and we passed the first school diabetes care law in 1998,” Crystal said. “The Virginia law requires that at a school that has a child with diabetes, a minimum of two people must be trained on insulin and glucagon.”
Out of that experience, the Association’s Government Affairs & Advocacy division offered Crystal a job where she could optimally utilize her knowledge, paralegal skills, and passion for diabetes care. She has been on staff with the Association since 1999 and has worked hard to achieve policy change in other states and school districts that would have an impact similar to the advocacy achievement in Virginia.
“It’s my passion,” Crystal said.
Crystal also said she saw the impact of the law almost immediately at her daughter’s school when she entered fourth grade.
“The law requires two people be trained, but when she started fourth grade, 25 teachers at my daughter’s school volunteered to be trained. The teachers really stepped up to the plate and said they wanted to support Devin and other students with diabetes,” Crystal said.
Devin is now a senior in college, but never far in Crystal’s mind. Crystal said she knew she had to relinquish some parental control as Devin moved on to college, but said she had faith that Devin would make smart choices. She’s also a realist about college.
“Any time kids move away, their parents are nervous. Kids grow up, you’ve got to let them. But they will always need and benefit from parental support,” Crystal said. “I’m a big proponent of letting a child fly on their own. You hate to see them fail, but sometimes that’s the best way to learn and to become more self-sufficient. Diabetes is no exception.”
Crystal said she also realized some of the things college students are prone to do.
“You have to be practical. You have to know they will go away to school and may choose to drink alcohol. Having been a college student myself and as the mother of two college students, I know what college kids do,” Crystal said. “My concern is that she would go low and nobody would know what to do. But she was the one in charge. It was my daughter’s decision to let her friends and others know about her diabetes and how to recognize and treat a low and how to get help if necessary. She made some good decisions.”
Crystal said Devin has told her roommates about her diabetes, how to identify signs of lows and one of her roommates was trained in how to give a glucagon shot. Devin also found out three of the girls and its alumni advisor in the sorority she pledged also had type 1 diabetes.
“With our support, she’s handled everything on her own beautifully,” Crystal said.
Crystal and Devin’s story is quite possibly one that hundreds of thousands of parents and their children go through. Another situation many parents and children have faced is dealing with diabetes care at school. In part two of our conversation, learn what Crystal has to say about road blocks parents and students face at school and the work that’s being done to ensure proper care for children living with diabetes while they’re at school.
All the best,
Disclosure: Crystal received no compensation for this post. All opinions contained in this post reflect those of the interviewee, and not of Sanofi US, its employees, agencies or affiliates.