11 Disability Survey

Dr. Hemlata

Contents:

1. Introduction
2. Understanding Disability
3. Research in Disability
4. Priority Areas
5. Types of Research in Disability
6. Research ethics in Disability

Learning Objectives:

1. To define the concept of research in Disability.
2. To enlist the various types of disabilities.
3. To describe the types of various research methods used in disability.
4. To identify the priority areas for research in disability.
5. To enumerate the research ethics in Disability.

1. Introduction

The knowledge that we get from our experiences, facts and theories gives us the capability to

cope up with a given situation and make new inventions. Human beings are distinct from animals because of the knowledge and use of experiences for improvement and development. The purpose of research is to expand knowledge or discover the truth which can be used as an evidence for formulating the strategies and policies for persons with disabilities.

In our society we have people with various abilities and physical conditions. Persons with disabilities are an integral part of our society. Efforts are required to provide them opportunities and facilities so that they can contribute in the society as a productive member. Research is required to provide more facilities and services that may be-aids and appliances, service delivery models, teaching methods etc.

There are no different research methods in disability, the research methods used in education or social sciences are used in disability. Considering the needs of persons with disabilities we need to use an appropriate method of research keeping in mind the basic ethics for research.

2. Understanding Disability

Disability has been defined as any restriction or lack of ability to perform an activity in the manner or within the range considered normal for a human being. Disability denotes the consequences of impairment in terms of functional performance or activity by the individual. Let us have a look at the various types of disability as defined by persons with disabilities Act, 1995 and National Trust Act, 1999.

2.1.  “Blindness” refers to a condition, where a person suffers from any of the following conditions; namely:

2.1.1. Total absence of sight; or

2.1.2. Visual acuity not exceeding 6/60 or 20/200 (Snellen) in the better eye with correcting lenses; or

2.1.3. Limitation of the field of vision subtending an angle of 20 degree or worse.

2.2.  “Person with low vision” means a person with impairment of visual functioning even after treatment or standard refractive correction but who uses or is potentially capable of using vision for the – planning or execution of a task with appropriate assistive device.

2.3.  “Leprosy cured person” means any person who has been cured of leprosy (bacteriologically) but is suffering from:

2.3.1.  Loss of sensation in hands or feet as well as loss of sensation and paresis in the eye and eye-lid but with no manifests deformity.

2.3.2.  Manifest deformity and paresis but having sufficient mobility in their hands and feet to enable them to engage in normal economic activity.

2.3.3. Extreme physical deformity as well as advanced age which prevent him from undertaking any gainful occupation and the expression “leprosy cured” shall be construed accordingly.

2.4. “Hearing Impairment” means loss of sixty decibels or more in the better ear in the conversational range of frequencies.

2.5. “Locomotor disability” means disability of the bones, joints or muscles leading to substantial restriction of the movement of the limbs or any form of cerebral palsy;

2.6. “Mental retardation” means a condition of arrested or incomplete development of mind of a person which is specially characterized by sub normality of intelligence.

2.7.   “Mental illness” means any mental disorder other than mental retardation.

2.8.        “Autism” means a condition of uneven skill development primarily affecting the communication and social abilities of a person, marked by repetitive and ritualistic behaviour.

2.9.        “Cerebral Palsy” means a group of non-progressive conditions of a person characterised by abnormal motor control posture resulting from brain insult or injuries occurring in the pre-natal, perinetal or infant period of development.

2.10.     “Multiple disabilities” means a combination of two or more disabilities as defined in clause (i) of section 2 of the Persons with Disabilities (Equal Opportunities, Protection of Rights and Full Participation) Act,1995

3. Research in Disability:

WHO world report on disability has mentioned that lack of reliable research hinders the development and implementation of effective rehabilitation policies and programmes.

In India the research in disability is on the back foot. Most of the organizations and universities are focusing on delivering of services or providing education to students with disabilities. There is a need to focus on evidence based research which can help in the intervention and rehabilitation of persons with disabilities in effective way. Lack of trained professionals, geographical diversity, effective implementation of policies, lack of incentives for the rehabilitation professionals etc. are some of the factors that affect that quality of research. There is an urgent need to carry out systematic research on various aspects related to the disabilities. The compilation of the research done on disability is also the need of hour for sharing the knowledge and capabilities. The limited researches done on disabilities in various universities and institutions needs to be popularised so that the outcomes may be shared for the larger interest of the society. The best practices can be replicated at larger scales.

4. Priority Areas for Research in Disability:

Disability is a multidimensional and multidisciplinary subject where a variety of 16 types of professionals are involved in providing services to persons with disabilities from birth to old age  There are various types of disability and in each disability there are several conditions that are unique for each individual. One may have only one or a mix of a few conditions or disabilities. There is a need to conduct research on many aspects of disabilities. The priority areas of research on disability may be as following:

(i) Philosophy of disability

(ii) History of disability

(iii) Sociology of disability of disability

(iv) Gender Dimension of disability

(v) Economics of Disability

(vi) Vocational Education of Persons with Disabilities

(vii) Counselling for siblings and parents of Persons with Disabilities.

(viii) Curriculum adaptation for teaching children with disabilities.

(ix) Curriculum transaction methods for children with disabilities.

(x) Early identification of disability

(xi) Early intervention of disability

(xii) Rehabilitation models of disabilities

(xiii) Teaching strategies for children with disabilities

(xiv) Early childhood special needs

(xv) Science education for children with disabilities

(xvi) Educational technology for persons with disabilities

(xvii) Barrier free environment

(xviii) Universal design of learning

(xix) Accessible tourism for persons with disabilities

(xx) Drama Therapy for children with special needs

(xxi) Sports for persons with disabilities

(xxii) Technology for persons with disabilities

(xxiii) Psychology of persons with disabilities

(xxiv) Training requirement of persons with disabilities

(xxv) Prosthetics and orthosis

(xxvi) Accessible softwares for persons with disabilities

(xxvii) Accessible films for persons with disabilities.

5. Types of Research in Disability

Disabilities is multidimensional and diverse, the needs of a child with disability may be different than the needs of an adult having disability. Even the needs of two children with same disabilities will depend on the condition and the severity of disability. The issues of persons with disabilities varies from one problem to another, a single method or process cannot be used for research on all for all types of disabilities or the issues related to disabilities.

The research in disability is not different from the conventional research. The researcher has to be sensitive and informed about disability for better outcomes. She/he should be able to interact with persons with disabilities. Let us discuss some of the methods which are used in conducting research in disability.

5.1         Historical Research

An understanding of our past helps us to know the dynamics of past events and develop better perception about the trends of future. We can better understand the causal relationships of past events and link it with present scenario. We can make policies and programmes and learn from the past. Best and Kahn says “History is a meaningful record of human achievement. It is not merely a list of chronological events but a truthful integrated account of the relationships between persons, events, times and places. We use history to understand the past and to try to understand the present in light of past events and developments.”

Historical studies of special education training centres, special schools and service providers will benefit in the curriculum development, planning of educational programmes, training activities and vocational programmes etc. In historical research, we very carefully and critically investigate, record, analyze and interpret the past so that we may be able to uncover the hidden facts which may anticipate the future in the light of the work done in the past.

5.1.1.   Significance of Historical Research in Disability:

The field of disability has its own history, and conducing historical research in special education can be of immense importance for both the theoretical and the practical purposes. The findings of historical research special help us in learning from our past mistakes and discoveries, we may identify the special educational areas that need reform, and, if possible, we may predict the future trend or make modifications as per the need. Significance of historical research in special education is as following:

Knowledge of the history of special schools, other educational agencies and services is an important part of the professional training of the special teachers.

Most of the work of the special schools is traditional. The nature of the work of the teacher and the services providers is restrictive and tends to foster prejudices in favour of familiar methods.

The history of special education enables the special educators to find out the best practices and limitations of a particular model, and it serves as a necessary factor for changes in teaching strategies in special education.

Various problems in special education needs to be talked in the light of their origin and growth for better outcomes. The future special educators need to know the historical perspective for better understanding.

The history of special education shows how the functions of social institutions shift and how the support and control of special education have changed from very simple and local arrangements to the present scenario.

5.2         Descriptive Research

Descriptive research denotes to describe the existing status of phenomena under investigation. We can say that the search is conducted for describing the different components of a phenomenon or exploring the new trends of the particular phenomenon. In this the focus of search is on the ‘what’ part of phenomenon with out making any change or control over the situation.

In descriptive research we try to study the relationships among non-manipulated variables only. In this type of research, the relevant variables are selected from the events/conditions that have already occurred or exist at present, and their relationship is analysed without introducing any manipulations to the variables. The events or human behaviour are studied in natural settings, in descriptive studies because sometimes it would be difficult to manipulate the variables. It is also unethical to manipulate the variables, if we want to study the effect of alcohol on the chances of cancer development, it would be totally unethical to deliberately assign subjects in the group that will drink and in that who will not drink so that a comparative study could be done. The variables are studied under natural conditions of the home, the special schools community etc. Descriptive research is the most popular and widely used method in special educational research. The descriptive research method is easy to use, the research data can be very easily obtained and interpreted. The results of descriptive research provide us with a platform to make important decisions and also generate more research ideas to be tested by the future researchers.

5.2.1   Significance of Descriptive Research

The following points prove the significance of descriptive research in the field of special education:

Description of the Present: The descriptive research studies describe the current and present phenomena of special education, problems and/or opinions possessed by the teachers, parents, students, etc. about their educational environment.

Easy and Direct: This method is very easy and direct in use and, hence, is a very popular and widely used research method.

Only Means: In this method we study the existing relationship between or among the variables without any manipulation. In many research situation the manipulation of variables is a very tough work.

Suggesting Solutions: Descriptive research not only describes the current problem but also suggest valuable and important solutions to the problems.

Developing Data Collection Tools: The descriptive research is also very useful and helpful in developing the data collection tools like questionnaire, schedules, checklists, etc. in the field of special education.

Development of Generalizations, Principles or Theories: The descriptive research is very useful in developing new generalizations, principles or theories which possess universal validity and utility for all working in the field of special education.

Study of current structure and functioning of special education system can help us to develop a parallel between the national and international scenario and develop a model that can have features of both.

Based on the descriptive research the policy makers, special educators and decision makers can improve the field of special education.

Descriptive surveys can also be a basis for testing a theory in reality. Descriptive Research can be divided as following

5.2.2.    Case Studies

Human development is a continuous and natural process that goes through many stages like childhood, adolescence, adulthood and old age. According to the psychologists in these stages childhood is the most critical and important one. In this stage children grow rapidly and their psycho-physical development need more attention. In case of disabilities a better intervention can be done by assessing the needs of a child at early stage. Case study is an effective method for providing a better intervention to the child having disability and understanding the ability, inability, attitude, aptitude and other aspects related with the child.

According to T. Boone Pickens, Jr. “Case study may be defined as a systematic, scientific, and empirical inquiry that investigates a phenomenon within its real-life context. It is a detailed analysis of persons or group especially as a model of medical, psychiatric, psychological or social phenomena. It is the reconstruction of the past life of an individual in order to determine the underlying causes for his/her present physical and mental condition. It refers to the detailed information regarding the child, right from conception. It is an important source of information and is collected by interviewing the parents, family members, teachers, and peers, academic and medical reports of the child.”

The case study method is based on real-life (realistic) practical problems and such seeks to make the issue come alive for the student. It incorporates the idea that students can learn from one another “by engaging with each other and with each other’s ideas, by asserting something and then having it questioned, challenged and thrown back at them so that they can reflect on what they hear, and then refine what they say” (Bochner 1990). In summary, students can direct their own learning by formulating questions and taking responsibility for the study.

A case study is very important for planning the remedial strategies for children with disabilities. It always do the intensive, detailed description and analysis of a person with disabilities in context to their past conditions and present status.

The case study is an important tool for getting all the relevant and important information about the child. It should always be done in very informal way and in a friendly environment. It includes interviewing the parents/siblings who accompany the child to the school/child guidance clinic/training centre. In most of the cases special educators and social workers are the first one to come in contact with the parents of the child with disability. In Indian context it is often seen that they identify the child, collect specific information about them and guide the concerned persons for remedial measures.

5.2.3.    The Survey

Let us understand the origin of the term survey. It is derived from two words: ‘Sur’ or ‘Sor’, which means “over” and ‘Veeir’ or ‘vor,’ which means, “to see.” Accordingly, we can say that the term survey mean to look over or to oversee.

According to the webster’s New Collegiate Dictionary survey is defined as a “critical inspection, often official, to provide exact information, often a study of an area with respect to a certain condition or its prevalence, e.g. a survey of the school.”

In survey, the data is collected from a large number of people at a particular time about some particular phenomenon i.e. survey on disability prevalence in south Delhi. It is a very skilful activity that requires imaginative and expert planning of the study. Apart from this the accurate data collection, careful analysis and logical interpretation of the collected data, and intelligent reporting of the result and conclusions are integral part of a good survey.

Surveys can be of many types but the most prominent methods of survey can be identified as census survey and sample survey. This classification is done according to population of the study and its coverage. Another classification can be noticed with regard to coverage of time or stages of events studied i.e., in terms of longitudinal and cross-sectional surveys. Third category of survey is documentary survey, with is conducted by gathering evidences from different kinds of records/documents. There is another way of classifying surveys i.e., according to purposes of studies. For example status surveys, correlation surveys, comparative surveys and evaluation surveys.

Surveys are very important in the field of special education as they give a baseline for preparing any plan for the benefit of persons with disabilities. This method is quit useful for disability sector. Screening of children with disabilities can be done with the help of surveys and based on the findings suitable action plan can be formulated.

5.3         Correlational Research

In correlational research we try to study the exiting relationships between two or more variables. It should be kept in mind that the main aim of research is not only to discover what is presently unknown but also to predict the future relationships between various variables. We need to explore the existing strong relationships between certain variables. The correlational studies are conducted to these make these comparisons easy and possible.

5.3.1.    Significance of Correlational Research

The main aim of a correlational research is to explore the correltion between or among the variables. These correlations help us to understand the conditions and events in a better and meaningful way. It also helps in making predictions about the future conditions and events. Eventually these research studies help us to explain, predict and up to some extent control certain conditions and events.

Take the example of great behavioural psychologist B. F. Skinner. To him most events could be expressed as: X(f) Y, i.e. X is the function (f) of Y, and this is possible only because both are correlated. In his experiments, X refers to the behaviour of the pigeon and Y refers to the reinforcement given to the pigeon after it performs some particular behaviour (e.g., pecking at a tray). The pigeon learns to pech at the tray because it leads to some reward (food). On the basis of his experiments, he concluded that one thing caused another that is, the proper administration of reinforcement led or caused the bird to behave in a certain manner.

Now, on the basis of this information and knowledge, we can conduct some correlational study in the special educational and/or classroom settings and predict the behaviour of the students and up to some extent we can control their behaviour by applying various types or schedules of reinforcements.

Actually, correlational research required only a few sources of data, but these sources must provide or supply two measures or scores for each subject studies. For example, if we want to explore the relationship between the level of anxiety and student performance, we essentially need scores on these two variables each for all the subjects of the sample.

5.4.   Causal –Comparative Research

Causal-comparative research is also referred to as “ex post facto” research, which means after the fact or from a thing done afterwards. In this type of research the researcher is studying the cause-effect relationship that already exists, without attempting any control or change in either the cause or the effect. We can say that it refer to some type of subsequent action taken after something has occurred or happened, and now we want to study or evaluate its effect in terms of the causal relationship.

Kerlinger (1974), defined ex post facto research as a “systematic empirical inquiry in which the scientist does not have direct control of independent variables because their manifestations have already occurred or because they are inherently not manipulate. Inferences about relations among variables are made, without direct intervention, from concomitant variations of independent and dependent variables.”

This definition highlights two major characteristics of ex-post facto research: one is that the researcher studies the causal relationship between independent and dependent variables without having direct control of independent variable by randomization or manipulation and two is that the researcher has taken the situation as it is, he or she has not made any change in the situation.

This research is about studying the cause effect relationship that is already existing without making any control or change in its cause or the effect. Basically this is done after the incident has already occurred. We logically establishing the cause-effect relationship in this type of research.

For example, if we wish to study the maladaptive behaviour, we cannot manipulate the causes of maladaptive behaviour in children with mental retardation.

5.5.        Experimental Research

In experimental research one tries to find out the cause and effect relationship between independent and dependent variables in controlled situations. In this method the researcher test the hypothesis by following certain rules.

Good (1966) states that “is experimentation the investigator controls (manipulates or changes) certain independent variables and observer the changes which take place in the dependent variables”. We can say that in this type of research the researcher manipulates the research situations to explain causal relationship between independent and dependent variables. For example if from two groups of children with mental retardation, one is taught with the help of group activities and another is taught through individual activities. The outcome of the methods of teaching will be studied in terms of learners achievement.

The causal – comparative research and experimental research are almost alike in terms of purpose and procedure of research. One very important difference that separates them is the cause. In causal-comparative research the cause cannot be manipulated; on the other hand, in experimental research, we can and do manipulate the causes so as to change the effects. The most reliable and dependable type of special educational research is the experimental research in this we conduct “experiments” to explore the true causal relationships.

5.5.1.   Significance of Experimental Research in Special Education

The conduct of experimental research in special education field may determine and evaluate the accuracy, adequacy and effectiveness of various educational programmes and strategies. On the basis of this we may further conduct experiments to explore the possibilities for the effective formulation of proper educational planning and execution for children with disabilities. Based on the experiments we can suggest modification in the existing educational policies, programmes, and teaching practices, etc for the benefit of children with disabilities.

5.6.        Action Research

Corey (1953) defines action research as, “the process by which practitioners attempt to study their problems scientifically in order to guide, correct and evaluate their decision and action.” He further submits that, “action research is a process for studying problems by practitioners scientifically to take decision for improving the current practices.”

We can say that Action research is an applied research that the special educators, instructors and school administrators conduct to deal with classroom problems and improving classroom teaching practices. Special teachers may conduct studies in order to explore the possibilities of improving the schools and teaching practices, the professional as well as personal growth and development of a teachers, developing better curriculum and preparing better textbooks.

Best and Kahn (2000) say, “its purpose is to improve school practices and, at the same time, to improve those who try to improve the practices: to combine the research processes, habits to thinking, ability to work harmoniously with others, and professional spirit,”

It is worth mentioning that action research is conducted through direct action and it is primarily focused on immediate application for the instant benefit not on the development of broad theories or generalizations or on general application for future. It studies the problem from the point of view of here and now in one’s own local setting and the findings of action research are evaluated in terms of local applicability and not in terms of universal applicability and validity. In the field of special education more focus is being given on the action research and it is also the need of hour.

5.6.1.   Significance of Action Research in Special Education

Action Research is very significant for the field of special education. It plays a very important role in making the special educators and administrators responsive towards the solutions of various kinds of problems and taking active role in efficient functioning of the special schools. Special education field is related to the human participation. The teacher, students and parents face lots of challenges in their everyday life while teaching the special children. If action research provide them some solution then they will benefit a lot.

6. Research Ethics in Disability

The basic research ethics says that any research involving human beings should be conducted in a way that respects the human rights of the individuals involved. UN convention on rights of person with disabilities clearly says that the inherent dignity, individual autonomy and independence of persons should be respected. The core principles spelled out in article 3 of UN convention are central to the ethical evaluation of research that include: –

Equality

Full and effective participation and inclusion in society. Respect for difference Accessibility

Based on these principles the following must be kept in mind which doing research in disability.

• (i) Involve persons with disabilities as active participants in the research, they should not be used as passive objects of research.
• (ii) The participants should be provided accessible environment i.e. if they need sign language interpretation or verbal description of something that must be provided.
• (iii) The researcher should not show over protection or rejection for a person with disability as part of research.
• (iv) The consent from the individual or parents/guardian must be taken well in advance.
• (v) The specific need of participants with disability should be kept in mind.
• (vi) The dignity, autonomy, equality and diversity of the participants should be respected through out the research.
• (vii) The comfort of participates should be kept in mind. They should be provided breaks, water, tea, refreshments etc. at proper time intervals and their daily routine should not e disturbed during the research process.
• (viii) Provide various means of communication for the participates with visual, learning, speech or cognitive impairment.
• (ix) Confidentiality should be maintained.
• (x) Undue pressure on participants to be a part of research study should be avoided.
• (xi) Researcher should not discriminate with the subjects.
• (xii) Before asking their views on a topic it must be explained to them.
• (xiii) In case of research in school the researcher must keep in mind the timings of school, she/he should not delay the child for his/her daily routine activities.
• (xiv) The data collected should not be shared with others without permission of the child or parents/guardian.

Summary

•  There are no different research methods in disability, the research methods used in education or social sciences are used in disability. Considering the needs of persons with disabilities we need to use an appropriate method of research keeping in mind the basic ethics for research.
•  Disability has been defined as any restriction or lack of ability to perform an activity in the manner or within the range considered normal for a human being. Disability denotes the consequences of impairment in terms of functional performance or activity by the individual. Let us have a look at the various types of disability as defined by persons with disabilities Act, 1995 and National Trust Act, 1999.
• “Hearing Impairment” means loss of sixty decibels or more in the better ear in the conversational range of frequencies.
• “Locomotor disability” means disability of the bones, joints or muscles leading to substantial restriction of the movement of the limbs or any form of cerebral palsy.
• “Mental retardation” means a condition of arrested or incomplete development of mind of a person which is specially characterized by sub normality of intelligence.
• “Mental illness” means any mental disorder other than mental retardation.
•  “Autism” means a condition of uneven skill development primarily affecting the communication and social abilities of a person, marked by repetitive and ritualistic behaviour.
• “Cerebral Palsy” means a group of non-progressive conditions of a person characterised by abnormal motor control posture resulting from brain insult or injuries occurring in the pre-natal, perinetal or infant period of development.
• “Multiple disabilities” means a combination of two or more disabilities.
•  In historical research, we very carefully and critically investigate, record, analyze and interpret the past so that we may be able to uncover the hidden facts which may anticipate the future in the light of the work done in the past.
•  Descriptive research is the most popular and widely used method in special educational research.
•  A case study is very important for planning the remedial strategies for children with disabilities. It always do the intensive, detailed description and analysis of a person with disabilities in context to their past conditions and present status.
•  The conduct of experimental research in special education field may determine and evaluate the accuracy, adequacy and effectiveness of various educational programmes and strategies.
•  Action Research is very significant for the field of special education. It plays a very important role in making the special educators and administrators responsive towards the solutions of various kinds of problems and taking active role in efficient functioning of the special schools.