Commentary on the ‘Proposed Purpose of an Internationally
Comparable General Disability Measure’
By V. M. Tamhane,
Assistant
Director of Census Operations,
Office
of the Registrar General & Census Commissioner of
The
proposed purpose of an internationally comparable general disability measure is
one of the most potent strategy papers for the welfare of the disabled
population across the globe. The disabled population that lives in various
countries in different environment is faced with similar problems and is
subjected to discrimination in day-to-day life. The proposed purpose is in tune
with the growing need for a concerted effort to ensure that people with
disabilities are treated as equal in every sphere of life, have access to
services, health care and they live a dignified life, their role in nation
building is recognized and they are provided with legal support through
legislations. The implementation and monitoring of a common program for the
equalization of opportunities, rehabilitation and prevention simultaneously
across the countries would not only help the noble cause but will create
environment where these measure would be comparable. The proposed purpose is the out come of the
hard work put in by the Washington Group. In their endeavor, the WG has looked
into almost every aspect concerning disabled persons in the existing
environments, which vary. The role of census and surveys,
their significance as also shortcomings have been examined.
The
WG has skillfully presented a module that would execute the objectives of the
World Programme of Action for disabled persons
adopted by the United Nation’s General Assembly in the year 1983 where
principles concerning prevention of disability, measures for their
rehabilitation and equalization of opportunities were outlined. The initiative
taken by the UN prompted governments to take appropriate welfare and
legislative measures. In
The position paper on ‘Proposed Purpose of an
Internationally Comparable General Disability Measure’ aims to achieve three
major goals set out by the WAP namely, equalization of opportunities,
rehabilitation and Prevention. The prevalence and extent of disability is
proposed to be measured through population census, as population Census is more
suited to collect information on certain individual characteristics. The
disability matrix has been worked out after much deliberation keeping in view
the prevailing social and other environment across the countries as also the
methods of data collection and its use. The WG, has in fact, prepared a module
for all round assessment of disability scenario and has formulated purpose that
will ensure rehabilitation, prevention and equalization of opportunity for
disabled population with international comparability. The WG has selected three
classes of purpose for identification of persons with disabilities at aggregate
level. These are:
·
to provide
services, including the development of program and policies for service
provision and evaluation of these programs that includes addressing need for
housing, transportation, assistive technology, vocational or educational needs
and long term care;
·
to monitor the
level of functioning in the population meaning estimation of rates and analysis
of trends; and
·
to assess equalization of opportunities, these classes of
purpose are most relevant and feasible for implementation. These will go a long
way in achieving the most important objective, that is, overall welfare of the
disabled population across the globe.
Although
practical measures have been suggested for the scheme, it remains to be seen as
to how these are executed under different environments. Monitoring would be the
key factor for the long-term success / assessment of this well developed
strategy and international comparability. It also remains to be seen that even
after identification how the disability would be measured to further identify
true disabled who need immediate attention.
Difficulties in census: An important aspect of Identification and measurement of
disabled population is the definition of disability that is used. There are
different definitions of disability in use internationally. The particular
definition chosen has implications for the numbers of people with disabilities
and the prevalence of disability in the country. The definition of disabilities
requires measurement of disability which census enumerators find difficult to
handle. Similarly, imparting special training to a huge contingent of Census
Enumerators for collection of information on such a sensitive topic is not
easy. They are usually not trained to go into the technical aspects. Despite
the fact that the Population Census has the advantage of providing complete
coverage of the population, it is difficult to collect accurate information on
disability in the census. Because disability is a sensitive topic and the
respondents are reluctant to divulge information on this aspect. Some of the
disabilities are considered stigma and these are not reported honestly by all.
The stigma does not always affect the disabled person alone but the entire
family is subjected to social disability. It is probably for this reason that
historically the information collected in Indian Census on disability has never
been satisfactory. Lack of awareness on the part of respondent’s results in low reporting of disabled
population.
Census of
India 2001: At the Census
of India 2001, information on five types of disabilities has been collected.
These are:
1.
Disability in Seeing 2.
Disability in Hearing
3.
Disability in Speech 4.
Disability in Movement, and
5.
Mental Disability.
The question on
disability was canvassed with simple definitions without having to measure the
extent of disability. To overcome the problems faced in earlier censuses,
awareness –cum- publicity campaign and extensive training for the Census
Enumerators was organized. The NGOs and other Government agencies also joined
hands in this endeavor. It is believed that this strategy has worked to a large
extent and the combined efforts have resulted in better enumeration of disabled
population under various categories.
Utility of
Census Data: The census
data would provide basis for the three selected purposes identified by the WG.
This helps in preparation of sound frame for formulating programs and policies
and to provide essential services to the disabled. It is also easier to assess
the need of housing, transportation, education, employment, etc. for this
section of the society. The data also
provide details of age-groups, sex, size of household, economic pursuits,
education, marital status, religion, migration, type of households, etc. in the
rural and urban settings by type of disability at the lowest administrative
level. These data could also be utilized to cull out information on certain
other variables. In
As envisaged, rehabilitation
is significant to the welfare of people with disabilities. It is necessary to
keep track of both the requirement and the availability of accessibility and
appropriate aids and support services, which are coordinated across agencies.
Rehabilitation would involve measures proposed to compensate for a loss of
function or a functional limitation (for example by technical aids) and other
measures intended to facilitate social adjustment or readjustment. The Census
Data would help in identifying both the persons by type of disabilities and the
locations. This will be of help to generate schemes for providing specific
assistance and also to reckon the future needs. Monitoring the level of
functioning require developing certain indicators. It is rightly mentioned that
functioning encompasses the conceptual domains of body functions and structures
as well as activities and participation.
The Census Enumerators are not trained to canvass such questions. Such
information could be gathered by other agencies using basic census data.
Further, The role of utilization of technology for
enhancement of body functions and skills cannot be ruled out. The development
of appropriate technology is an aspect that needs to be looked into.
The
data collected through census are also useful in meeting the purpose of
‘Assessment of Equalization of Opportunity’ to a great extent. It may not
provide information on the out- come of the anti-discrimination laws and
rehabilitation programs, but it would definitely provide information that would
be used for planning and framing of policies. The level of participation of
disabled population in economic activities by type of activity would form the
basis for international comparability. We totally agree with the basic theme
that if people with disabilities are to be given a life of dignity and reach
their optimal potential they need to be able to participate with others on an
equal footing. Adequate legal and financial support must come from the
governments that will ensure that the disabled have the power to control their
own lives and have access to information, equipment and the full range of
services, including education, employment, health, housing, transportation,
recreation, etc. Measurement of these elements would than become an integral
part of the information system on disability.
However, the
first and foremost need is to make the disabled aware about their own rights.
The mind-set of general population at large may also have to be changed through
a sustained publicity / awareness campaign.
The WG has rightly proposed the assessment of equalization
of opportunity as the purpose for the first general disability. This is
probably the most suitable purpose to be implemented internationally. This is,
where census data, would come handy. Based on the census data specific surveys
with specific objectives can be conducted. The methodological challenges as
well as the objectives of small sets of surveys would meet with certain amount
of difficulties but it would be worthwhile to accept this challenge for the
sheer joy of ameliorating the lot of disabled.
The
Census of India on its part would cooperate in every endeavor as and when the
need arises.