Estonian activists: The system is a bigger obstacle for people with disabilities than the condition itself
Two young Estonians, one living with a chronic illness and one with a mobility disability, write that fragmented healthcare and education systems often burden them more than their actual conditions. They call for clearer, earlier explanations of major decisions and better coordination between institutions.
In an essay for ERR News, Diana Põder, who lives with chronic health conditions, and Remi Gregori Sassi, who has a mobility disability, describe how Estonia's healthcare and education systems frequently fail to see people as whole individuals.
The authors explain that chronic illness rarely begins with a dramatic symptom — more often it starts with not being listened to, or a young patient being told a symptom is just stress before its real cause is identified. Managing a chronic condition can become a full-time task: coordinating physical therapy, rehabilitation, specialists and a family doctor can take many hours a week, partly because different healthcare providers use separate information systems that don't communicate, leaving patients to relay their own medical information between doctors.
Education decisions with long-term consequences
The authors also point to decisions within the education system, such as placing a student on a simplified curriculum, which can quietly narrow a young person's future career options if families are not told what the decision opens up or closes off. They stress they are not against simplified curricula, which are necessary for many students — the problem is a lack of honest explanation at the time the decision is made.
Young people facing multiple overlapping conditions, such as chronic illness combined with ADHD, or a mobility disability combined with a learning disability, are especially affected because healthcare, education and social services each look only at their own piece of the picture, rarely at the whole person.
The authors call for families to receive honest information about the long-term impact of major decisions, better cooperation between institutions, and greater trust placed in young people's own understanding of their situation. They conclude that the biggest barrier for people like them is usually not the illness or disability itself, but a system that fails to see the whole person.
