UN Convention on the Rights of Persons with Disabilities (CRPD) and the right to inclusive education for children with spina bifida and hydrocephalus

Source: Multi-IN GENERAL GUIDELINES for inclusive education and multidisciplinary care of leaners with spina bifida and hydrocephalus

Children with disabilities are a vulnerable group of children and a specific group of persons with disabilities. The United Nations presented the Convention on the Rights of Persons with Disabilities with the aim of reinforcing their full and effective participation in society. Because children are dependent on decisions of adults around them, it is crucial, which type of information and approach have these important adults on life of children with disability. The Convention says that respect for children’s dignity is necessary and notifies that girls and women with disabilities are at greater risk of being abused or neglected, having their rights violated.

Recognizing that children with disabilities should have full enjoyment of all human rights and fundamental freedoms on an equal basis with other children and recalling obligations to that end undertaken by States Parties to the Convention on the Rights of the Child. (Preamble of CRPD – paragraph r)

CRPD (Convention) brings a new definition of disability. It highlights interaction between the person and barriers in society.

„Recognizing that disability is an evolving concept and that disability results from the interaction between persons with impairments and attitudinal and environmental barriers that hinders their full and effective participation in society on an equal basis with others. “ (Preamble of CRPD – paragraph e)

Adults around children with disabilities play a big role in identification of different barriers which can hinder his/her participation in different types of school, free time activities, sport, culture, and the other aspects of life.

People living with spina bifida around the world are still struggling for their dignity these days, even though many of them live independent lives and successfully represent states in sport, the arts, politics, science, and many other jobs.

The Convention contains 50 articles, of which we list 30 areas dealing with the most important areas of life for people with disabilities.

  • 1. Purpose.
  • 2. Definitions.
  • 3. General principles.
  • 4. General obligations.
  • 5. Equality and non-discrimination.
  • 6. Women with disabilities.
  • 7. Children with disabilities.
  • 8. Awareness-raising.
  • 9. Accessibility.
  • 10. Right to life.
  • 11. Situations of risk.
  • 12. Equality recognition before law.
  • 13. Access to justice.
  • 14. Liberty and security of person.
  • 15. Freedom from torture or cruel, in human or degrading treatment or punishment.
  • 16. Freedom from exploitation, violence, and abuse.
  • 17. Protecting the integrity of the person.
  • 18. Liberty of movement and nationality.
  • 19. Living independently and being included in the community.
  • 20. Personal mobility.
  • 21. Freedom of expression and opinion, and Access to information.
  • 22. Respect for privacy.
  • 23. Respect for home and the family.
  • 24. Education.
  • 25. Health.
  • 26. Habilitation and rehabilitation.
  • 27. Work and employment.
  • 28. Adequate standard of living and social protection.
  • 29. Participation in political and public life.
  • 30. Participation in cultural life, recreation, leisure, and sport.

The Convention repeatedly emphasizes the positive contribution of people with disabilities to society.

Article 8 of the Convention emphasizes the importance of raising awareness about the rights of persons with disabilities and their positive perception. It encourages all means of mass communication to portray people with a disability in a manner consistent with the objective of this Convention.

Every child with disability has not only specific needs but also has her/his rights. He or she not only needs special support, but he/she has the right to be supported on the way of identifying existing barriers in the society and promoting reasonable accommodation. We would like to introduce children with spina bifida and hydrocephalus, focusing on their positive image, strengths and present to professionals how they can increase them. There is no other way than to start by presenting people with spina bifida and hydrocephalus in a positive light.

Young man with spina bifida – Dominik Drdul from Slovakia – asked the audience before him in his speech:

“Can you see my strength? My weaknesses are visible.”

When we think and speak about the rights of people with spina bifida and hydrocephalus, we consider it as important to apply it into everyday life of these children. What we want to see is the integration of a holistic set of provisions for people with these disabilities, integrated into mainstream systems that are adequately resourced.

The Convention therefore considers importance of the trainings for professionals and staff working with persons with disabilities as the rights recognized by the Convention and as a mean of improving the support and services guaranteed by the rights.

The Convention also recognizes the importance of persons with disabilities and their individual autonomy and independence, including the freedom to make their own choices. It makes a difference when adults understand and strengthen the autonomy and independence of a child with disability and treat him/her with respect from his/her early years.

The Convention pays particular attention to the need to promote respect for the rights of people with disabilities at all levels of the education system and for all children from an early age. There is a very close link between education and human rights. We will write more about it in the chapter about inclusive education.

The full text of the UN Convention on the Rights of Persons with Disabilities can be found HERE