What do pupils with spina bifida and hydrocephalus want you to know about their education?

If pupils with spina bifida and hydrocephalus could have their say on how they imagine their education and the support they need, they would be very likely to be happy to say these thoughts:

1.            I come to school to learn how to communicate, function in everyday life, understand others and live with my peers.  I am not in school to get as much information as possible into my memory.

2.            I am first and foremost a child, though I am clearly a different child in some ways.

3.            Some of my individual needs are different from most of my classmates, but I have the same rights as everyone else.

4.            I should have the same opportunities to choose, to participate, to try things and experiences as my other classmates.

5.            Even though I am a person with a disability, I have unique gifts, abilities. I know how to enrich the people around me.

6.            It will help me if I am only compared to myself. I have my own unique individual needs – also due to my diagnosis – and therefore it is unfair to compare me to those who are not affected by a disability.  

7.            My limits are obvious. Encouragement to not be afraid to ask for help will help me.

8.            Maybe sometimes I can’t fit in.  I need support in how to create and maintain relationships with other people and appreciation of my – even if only small – progress. It will be beneficial for me to experience the beauty of working with peers in which I can be an asset.

9.            Please listen to my opinion, my point of view. Together we can more easily identify the barriers that prevent me from participating and expressing my abilities.

10.          It will help if I experience respect for my uniqueness, acceptance of my abilities and limits.

11.          It will be helpful if you allow me to make mistakes and help me learn from them.

12.          It will convince me if I experience that it pays to be grateful, kind, empathetic and understanding of others.

13.          I will be glad if you can guide me on what I can control and what I can’t control, so that I can better regulate my emotions.

14.          You can help me build my ability to make independent decisions by giving me responsibility for age-appropriate decisions.

15.          Respect me and help me to be respected by others, encourage my respect for myself and others.  It will teach me to respect myself.

16.          You may perceive how my family or immediate surroundings have influenced me so far. It will be beneficial to me if you offer something that moves me towards greater autonomy and the ability to make my own decisions.

17.          If I can see in the people around me how they accept and deal with challenges, I can handle mine more easily.

18.          In the way you communicate with me and about me, I can sense what your beliefs are, your views on people with disabilities, and whether you consider me an equal partner or someone inferior. 

Thanks to her long and active collaboration with young people with spina bifida and hydrocephalus,

T. Drdulová (2023).

Source: Multi-IN MANUAL for special teachers in kindergartens, primary and secondary schools on multidisciplinary care and inclusive education for children and pupils with spina bifida and hydrocephalus