Childhood disability issues and implications for an effective rehabilitation process

Marta Prota

• Publisher: EDUCatt Università Cattolica
• Year: 2015
• ISBN:
  9788867807260
• Topic: Pedagogía
• Subtopic: Ensayos de la educación

Disability, and specifically childhood disability, is an issue that is evolving and which recently met worldwide interest in both developed and developing countries. After the enactment of the Convention on Rights for Persons with Disability (CRPD) in 2006, many moves have been made toward the establishment of disabled children's rights, both on international and national panoramas, but there is still a long way to go, primarily for complete and effective inclusion in their local community.
Working with children with special needs means working with disability; working with disability means firstly knowing that it is a multi-factor and multi-faceted experience that every person could potentially experience during his life. Because of the complexity and the plurality of the topic, we are going to focus on two specific aspects of disability. Firstly, the side related to culture, which means the different perspectives, meanings and connotations that the concept of disability has in different cultural, social and economic conditions, starting from the definition of disability itself. Secondly, we are going to focus on the rehabilitation process, not limiting this to technical considerations (such as physical therapy, occupational therapy, speech therapy and so on) but investigating the essential role that the disabled child's family plays in the process of rehabilitation and the consequent need to build successful cooperation with them. What link is there between disability and rehabilitation? The goal of rehabilitation is to restore an individual's ability to his/her normal or near-normal functional capabilities after the occurrence of a disabling event. So rehabilitation is a tool through which it is possible to reduce the impact of disability in a person's life. But very often some disability is going to remain, and this is truer in childhood rehabilitation, since disabling diseases that affect children are very complex and involve many different body functions. In this situation, the compliance and the understanding of the family is crucial to obtain maximum results from rehabilitation. A realistic but non-cruel picture of the situation, shared goals, good levels of communication and feedback are essentials components for good results. The aim of this handbook is to provide basic but indispensable tools for reaching them. Tratto dall'Introduzione

Chapter 1

Disability and cultures

1.1 An international perspective

What is disability? There still isn’t today, from an international perspective, a single and universally accepted definition of disability. Even the UN “Convention on the Rights of Persons with Disability”(2006), which is one of the biggest contemporary effort for the analysis of disabilities and for the protection of the fundamental rights of disable people, did not manage to come up with a definition of disability. For this reason in the cited document and its Optional Protocol, disability is defined in a “open” way in the Preamble «(...) Recognizing that disability is an evolving concept and that disability results from the interaction between persons with impairments and attitudinal and environmental barriers that hinder their full and effective participation in society on an equal basis with others (...)»1.

The reference model is the so called social model, in which the central concept of ... non-definition is a condition of the parity and equity of the disabled person to those who are non-disabled, in contrast with the “attitudinal” (prejudices and stereotypes) and “environmental” barriers that unfortunately many disabled persons experience at least once in their lives.

Also within a national perspectives cultural differences on disability emerge. Here are some definitions of disability: in Zambia the Persons with Disability Act states «persons with disability means a person with a physical, mental or sensory disability, including a visual, hearing or speech functional disability»2; in Saudi Arabian the Labour and Workman Law (Article 51), a “persons with disability” is defined as «any person whose capacity to perform and maintain a suitable job has actually diminished as a result of a physical or mental infirmity»3; in Peru the law states «persons with disabilities are those with one or more proven impairments with a significant loss of one or more physical, mental or sensorial functions, which imply the reduction or absence of the ability to carry out an activity within the margins considered normal, by limiting them in the fulfilment of a role, function or exercise of activities and opportunities for equitable participation in society»4; in India the Persons With Disability Act (1995) states «person with disability means a person suffering from not less than forty per cent of any disability as certified by a medical authority. And “Disability” means: blindness, low vision, leprosy-cured, hearing impairment, loco-motor disability, mental retardation, mental illness»5.

The variety of the definitions reported in the national normative frameworks clearly reflects the multi-shaped nature of the concept of disability and how much it is affected by cultural differences, socio-economic conditions and the historical heritage of countries. The “impaired” side of disability, where a lack of any single functional abilities is measured, might be stressed; or on the other hand, as in Saudi Arabian law, disability is linked to eligibility for work, as a sort of an instrumental framework, in which the individual is classified as disabled or not-disabled depending on his productive capability. Furthermore, as in the Indian statement, the border-line between normality and disability is established with numerical quantities, measuring specifically how much of the functional ability is missing, and then set out in several established categories.

Why is it so important to define disability in a formal way? I can affirm that definition is the first step in creating attitudes, policies and services for disabled persons. In nearly every Country access to services stated for disabled persons passes through an official recognition of the condition of disability, both in legal or medical terms. It could be in the form of economic support, a special aid teacher for a student with special needs, free access to medical care, supply of orthosis or assistive technology or many other forms of services. In any case, first of all an objective evaluation following official standard guidelines is required to establish the actual existence of a disability. And of course the specific nature of this standard influences profoundly the establishment of a disability. The stricter these standards are, the more potentially disabled people are cut out of the definition and so from accessibility to services. Imagine a country in which disability is linked to the suitability or not of a person for work or employment.

Imagine that, in that country, by law women are denied the right to work. Should a paraplegic woman with spinal cord injury from a car accident who needs a wheelchair to move be considered or not as experiencing disability? So how can we define her condition in a formal framework?

The last question introduces us to a core topic of this chapter. Disability is a multi-factor, culturally related, contest depending condition. But can we draw a line where disability becomes universal?

If on one hand the “relative” side of disability is not to be denied, on the other hand it cannot be a precondition or reason for which every aspect of disability is contextualized and interpreted in the light of the specific situation under analysis. An objective and “absolute” one-sided definition of disability exists; it is their fundamental rights to enjoy complete recognition as full human beings, in the name of their “humanity”. We must remember that even if for convenience we use the words “disabled person” disability is not an individual’s attribute but a condition that a person can experience during his life. This topic will be looked at closely in Paragraph 1.2.

Problems in finding an objective definition for disability come directly from the multi-shaped nature of the concept of disability itself but also from the different contexts for reference. An individual with a certain level of impairment placed into two different situations could experience two different levels of disability or even be identified as a disabled in one context and not in another.

This phenomenon acquires even more relevance in the process of measuring disability. Knowing how many people there are with disability and their circumstances helps efforts in planning services for them. Providing schools, education programs, or trained teachers for children with special needs must mean an analysis of their numbers, geographical distribution and the type of disability of children in the area under analysis. The same applies for planning health and rehabilitation services.

How disability is measured varies from Country to Country and influence the results. Census and surveys are often used to measure rates of disability in a selected population. The first covers a huge number of persons, but generally disability-specific questions are limited in these census. The second, a survey, can provide a more specific picture of disability with a more structured questionnaire, for example, but generally a smaller number of persons are questioned. In addition to the intrinsic limits of these research methods we must remember that social attitudes toward disability may distort or change the results. For example, it has been reported that “differences” in the prevalence of disabilities occur between self-reported and ‘measured’ aspects of disability6. Disability is interpreted in relationship to what is considered normal functioning and this, in turn, can vary depending on age, context and cultural beliefs.

Older people, for example, may not self-identify as having a disability, despite experiencing significant impairments, because they consider their level of functioning appropriate for their age.

From a social point of view, if disability is considered a stigma in the community, parents of a disabled child might present his impairment as less severe, or could even try to hide the child. Recently, a review7 of the literature about low and middle income countries reported childhood disability in a prevalence range from 0.4% to 12.7% depending on the study and assessment method. The lack of spe...