As part of our interest to feature parents advocating for their children’s rights within the inclusive education model, we were glad to have the opportunity to interview Jenny Egerborn, a mother who has used her voice and experience to advocate for change in the system and highlight what is not working. Among the several articles she has published are features in Dagens Samhalle, Expressen, Aftonbladet, to name a few.
THRIVE Nordics: You have written a number of articles addressing the crisis in schools regarding accessible education and resources for students with special needs. At what point did you realize you wanted to “go public” with your advocacy?
Jenny: One day I realized I had to go public after my daughter had been banned from preschool twice and I had to leave work because the principal called me and said they couldn’t handle her. They had put her in a room because she was seen by the staff “as a danger for other kids and the teachers”. I was so angry that there were no special groups for students with Autism and ADHD. She couldn’t be in school because they couldn’t provide what she needed. I wanted to spread some light on this matter so that the people who run the schools in our municipality would understand how the ”integrated” school hurts students with neuropsychiatric disabilities.
THRIVE Nordics: How has the response to your articles and media advocacy been?
Jenny: The response has been fantastic! Not from politicians or officials though. Not much has been done from the top to change anything it seems. Most of the time they defend the system which drives me crazy. But many people are in the same situation as my daughter and I have sent me many e-mails and messages on Messenger. Some teachers have called me to share how they agree with me.
THRIVE Nordics: Do you think part of the problem is a denial within society that this problem exists? If so, what are your thoughts and methods for confronting this denial?
Jenny: Yes. Exactly so. There is a huge lack of knowledge for Autism, ADHD and ADD in society. Relatives often don’t understand how these diagnosis work. Officials don’t understand, principals don’t understand and it’s like they don’t want to understand either. These students cost money. And they don’t want to spend more money on these kids. They think that the students will change and that their behavior will change if they just go to an ordinary class.
I try to explain that it would be cheaper for the municipality if they would have more special groups and that all teachers in every school would receive continued education for this so that they could learn how to approach these students. I know they don’t want to listen to me but my tactic is to keep on sending e-mails and write more articles. I’m quite stubborn and persistent.
THRIVE Nordics: What role do you think media plays in this crisis? Do you think there is currently sufficient coverage of the problem?
Jenny: Media has an important role in this matter. I don’t think there is enough coverage about these issues in the media. It was because of this that I approached the newspapers. Sadly though, a lot of parents are afraid to go public with these issues. Sometimes it’s because they don’t want others to know that their child has a diagnosis and sometimes it’s because they are afraid that it will create an even worse situation for their children if they as parents criticize the school.
THRIVE Nordics: “Inclusivity” and “inclusion”are often championed as the “right of all children” but for many parents as well as educators of children with special needs, we see firsthand how catastrophic and exclusionary “inclusive education” can be when not structured with proper resources. What are your thoughts on issues with inclusive education in Sweden right now and ideas for how it can be improved moving forward?
Jenny: The ”inclusive education” is a big catastrophe! I have written to politicians both in our municipality and in the government. I have tried to get them to do an investigation on ”The Salamanca Statement” which is the document Sweden signed along with 91 other countries in 1994. Since then there has been an explosive increase of students with neuropsychiatric disability diagnoses. And the Salamanca Statement was not written with these students in mind. It was designed for inclusion of students with physical handicaps and students from minority groups. There needs to be an investigation where they analyze this statement with students with neuropsychiatric disabilities in mind.
THRIVE Nordics: Mental health and burnout is also a very important issue when addressing parental advocacy. It can be a part of the reality of parents navigating the school system today which often poses severe challenges in accommodating their children. Do you have any thoughts to share on this under discussed yet critical topic?
Jenny: Officials and principals need to start listening to teachers and parents when they say that their student/child is not managing or coping in the inclusive school system. Parents need to be heard and taken seriously. Officials and principals need to start providing education to all teachers on how to work with students with neuropsychiatric disabilities. Parents should not have to worry every day how their kids will feel in school or worry about school calling to say they have to come pick their children up. Schools should start working with the psychiatrists at BUP (“Barn & ungdomspsykiatrin- Children & Youth Psychiatry) and listen to their recommendations for that specific student. Parents often have to be the link between different authorities which leads to exhaustion.
There is much to be done so that our children receive the same opportunity for a proper education. And there is much to be done to help society to understand what ‘NPF’ (neuropsychiatric disabilities) is and that it is actual diagnosis. Many still think it’s lack of parenting or just ”fake”. There is much to be done in healthcare to understand how parents of children with neuropsychiatric disabilities struggle with exhaustion and physical problems. I do my little part to try to create awareness by writing articles and blogging about it.
Jenny Egerborn is 41 years old and lives in Mjölby, Sweden. She is mother of three children, one with Autism and ADHD. She is a teacher in drama and religion, currently working as a teacher with the church of Sweden. When she saw the problems with the ”inclusive school” model and realized how many students don’t cope within this type of system, she wanted to highlight the issues politically. When that didn’t work, she started to write articles in national media and host lectures for teachers and the public about how life ”works” for kids with neuropsychiatric diagnosis and how parents advocate for their children’s rights both in society and school.