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Diabetes discrimination in schools: a heartbreaking story

What do you do if your child has Type 1 diabetes and isn’t getting the support they need at school?

That’s a question many parents of diabetic kids (particularly on the Kids Powered by Insulin group on Facebook) were asking as schools went back at the beginning of the year. Diabetes discrimination in schools isn’t something we want to talk about – but it is a reality.

diabetes discrimination in schools in south africa

One grandparent in particular, Theresa Waldeck, had a heartbreaking story to tell. Here’s what happened.

Tatum’s story

“My daughter and I approached a primary school in Pretoria six months prior to Tatum, my granddaughter, attending grade 2 in 2021. In our email correspondence, we clearly stated the situation of Tatum’s illness, and we were assured the best quality assistance by the principal herself.”

Sadly, this was not the case. 

“After many months of requesting to meet with the teacher and help her understand Tatum’s diabetes better to ensure she was in a safe environment, we finally had a meeting scheduled with the teacher and the principal. In this meeting I was told what I should do to make it easier for Tatum to take full responsibility for her diabetes, but was not given the opportunity to explain Tatum’s condition at all.

I tried to explain that Tatum understands her diabetes and can do many of the things on her own, but there are things that she cannot yet do due to the fact that she’s only 7 years old.

The teacher informed me that she is unwilling in all regards to assist with my child’s illness. She should be old enough and educated enough to know exactly what to do at all times. 

I was not given the time of day to fully explain the dangers of having Tatum (a 7-year-old child) unsupervised with schedule 5 medication. The school advised us that any prior correspondence was null and void, as we did not advise in full detail what we requested from the school and their staff, seeing as Tatum is a brittle Type 1 diabetic.”

Children’s rights

“They also waved the rights of our child and said that the teacher’s rights come first and she has the full right to decide (legally, we do not believe this to be true – we have copied the legal conditions below). We came with the notion that we would be able to discuss a compromise, or solution to the problem. 

We advised them that we had taken all the necessary steps to ensure that things ran smoothly for Tatum, the teacher and the 30 plus other students in the class.

We respect that just as Tatum has the right to an education, so too do the other students. We received no such respect from the staff.

We fully understand that all parties have rights, we were not asking for the teacher to become a highly educated pediatric endocrinologist after one meeting and a few emails. We were simply asking for the supervision any teacher would give any child if they were to not feel well or fall ill. The level of support we’re asking for is a few seconds to check that she is entering a dose of 5.5 instead of 55, for example. To prevent her accidentally overdosing on her schedule 5 medication. 

The school initially offered the services of the admin lady as she is certified in first aid. But then told us we would have to find alternative assistance with regards to support for my daughter. They later said that no one can help us with Tatum in the case of any emergency (even non-diabetic related!) which was not what we discussed.”

tatum's story about diabetes discrimination in schools

Basic diabetes education

“I would like to highlight the teacher’s attitude towards my daughter: there was no chance given from the teacher to even educate herself on the type of diabetes Tatum has. She received emails from us explaining the signs of high and low blood sugar, as well as simple steps to follow in either case. She definitely did not read these. On one of the days she was in this teacher’s care, my daughter was allowed to eat a meal without administering any insulin, and then sent outside for sports. Tatum was doing exercise in the sun with a reading of 20mmol/l, which in simple terms means her blood was as thick as syrup while she was doing strenuous exercise. We outlined precisely why that is dangerous, but the teacher didn’t read our email.

There are many details that are still to be discussed, and laws that I would like to sit down and discuss with a lawyer familiar in child law as well as with the Department of Education to find a solution to the problem that I have found within the public schooling system.” Diabetes discrimination in schools is a reality for many.

Taking an emotional toll

“The school staff even suggested I take my child to see a therapist. Tatum has been to a therapist and they deemed her fit for normal school, in all capacities of mental and physical aspects. 

Yet day in and day out my child cries and is showing signs of depression due to the treatment she is receiving from highly educated individuals meant to provide a safe environment for our children, whether they are sick or not. 

Government references to diabetes discrimination in schools

“Children under the age of 18 are legal minors, and accordingly, have limited legal capacity to act independently without the assistance of an adult. Currently, children can consent to medical treatment from the age of 14. Those below the age of 14 require consent from a parent; legal guardian or designated person. In the future, children will be able to consent to medical treatment from the age of 12, if they have ‘sufficient maturity’.”

www.Scielo.org.za

Theresa goes on to say, “I would like to highlight that the law clearly states, in line with the National Development Plan, there are actions that are to be prioritized by one or more government department or entities to work with as many of the barriers that persons with disabilities (in our case a 7-year-old Type 1 diabetic child) experience in and through different government entities. This case being a public school who refuses to acknowledge the basic right of any child: quality education in a safe environment.

The below document clearly states that action is needed from government, civil society and the private sector to work together ensuring the inclusion of persons with disabilities. An environment of care and inclusive society that protects and develops the human potential of its children, a place where people with disabilities may enjoy the same rights as their fellow citizens, where all citizens and institutions share equal responsibility for creating said environment.” We know that diabetes discrimination in schools is a problem.

Here are the references mentioned:

  • Robinson JA, Human S, Boshoff A, Smith BS, Carnelly M. Introduction to South African Family Law. 3rd ed. London: Butterworth, 2008.
  • Section 39 of the Child Care Act No.74 of 1983.
  • Section 129 of the Children’s Act No 2005
  • Article 4 No. 39792. Government Gazette 9 March 2016 .
    Department of Social Development.
    No 230 White Paper On The Rights Of Persons With Disabilities, 09 March 2016.

A teacher’s perspective:

Last year we published an article from Shelly Schutte, Type 1 diabetic and learning support teacher, about whether kids with diabetes need learning support in school (read it here). We reached out to Shelly to ask for her input on this difficult situation, and she had a lot of insight to share.

“Teachers are mandated to provide learning support for students. And chronic conditions are categorised as potential learning barriers.”

Shelly Schutte

The trouble is that teachers don’t often fill out an SNA1 (Support Needs Assessment) form for diabetics because, unless they’re struggling to learn (failing tests all the time), diabetes isn’t seen as something that requires support in the school environment. “Which is absolute nonsense!” says Shelly. “There are lots of different support mechanisms that can be in place for diabetics from day 1.”

“If there was a standard operating procedure, maybe schools would be less concerned about letting kids with diabetes in. This could take the form of a modified SNA1 form that focuses on physical / health barriers to learning or a guide to creating an ISP (Individualised Support Plan) for children with Chronic Conditions. But it’s really complicated. Teachers have so much they already have to care about – if it isn’t really simple, it’s not going to spread widely.”

We do recognise that teachers have an enormous amount to juggle, so how can we make it easy and not scary for them to care for children with Type 1 diabetes? That’s the problem we need to solve.

How to get involved

So what can we do to change this situation? How do we reduce diabetes discrimination in schools? The Pamoja Advocacy Programme is working to change things on a government level. The Pamoja team (T1 International in collaboration with the Sonia Nabeta Foundation (SNF) has put together an initial draft for a policy to implement and create awareness about the inclusive education policy which ensures that children with Type 1 diabetes cannot be denied entry to school. This policy also aims to improve the support needed by children with Type 1 diabetes at school.

Shelly is working with YT1 (the youth arm of Diabetes SA) and gathering stories from South Africans who have lived through this.

“I work in the Learning Support Department at WCED and I would like it to bring to WCED’s attention that some schools are not following inclusive education guidelines when it comes to Type 1 diabetes.

If you have experienced negativity and a lack of reasonable effort to make the school environment safe and welcoming for your T1D child, please submit your story by clicking on this Google form link.

Please be as fair to the school as possible (though I will keep all school names out of it). The goal is not to create a T1 utopia but rather to push for a reasonable, general policy that schools can follow, in line with Special Education White paper 6.

If you had a really positive experience with a school, please also upload your story as we can use this to model what is possible in different school environments.”

Share this Teacher’s Guide to Diabetes

Youth With Diabetes have developed an excellent Teacher’s Training Guide for Diabetes in School. You can share this guide (on email or printed out) with your school to encourage teachers to have a better understanding of diabetes. Download it here (simply click on ‘Download’ below):

Teacher’s Guide

Share your diabetes story

The other thing we can all do is normalise diabetes. Let’s talk about living with diabetes to as many people as possible so that it’s not as surprising when children with Type 1 diabetes are at school. 

If you want to share your #DiabeticSouthAfricans story on Facebook or Instagram, please email us a picture and your diabetes story (how you were diagnosed or what you’ve learnt from diabetes). Let’s all step up and share our diabetes stories!

What to read next?

Do kids with diabetes need learning support in school? We ask a Type 1 diabetic and learning support teacher to unpack it for us.

Kids and diabetes in school: Here’s what the International Diabetes Federation suggests for Type 1 diabetes in schools.

What is diabetes burnout? All you need to know about this common condition, and how to get help (you’re not alone!)

Photo by Element5 Digital and Jason Sung on Unsplash

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Sweet Life is a registered NPO/PBO (220-984) with a single goal: to improve diabetes in South Africa. We are funded by sponsorships and donations from aligned companies and organisations who believe in our work. We only share information that we believe benefits our community. While some of this information is linked to specific brands, it is not an official endorsement of that brand. We believe in empowering people with diabetes to make the best decisions they can, to live a healthy, happy life with diabetes.