--------- Forwarded message ---------
From: Meenakshi B. <[email protected]>
Date: Wed, May 1, 2019 at 6:34 PM
Subject: Fwd: census 2021
To: <[email protected]>



Dear Colleagues,

Greetings!

Government of India is gearing up for the next census. Find attached their
preliminary document for the same.
  Final_Agenda_for_DUC__1_ (1) - census.pdf
<https://drive.google.com/file/d/0B4v1kkJfrQrZMUxRek5UbTlzVkZiN3JodEpGUUxsVVAydV9F/view?usp=drivesdk>


Other relevant documents can be accessed from this folder
https://drive.google.com/folderview?id=1CjL6LlmJGd7KgmE9DYI1fX_9giBPjO-O


Thanks to NCPEDP for bringing it up and for initiating discussion to get
our views across to the Registrar General.

The relevant extract on disability reads :

---START OF EXTRACT ---

*ACTUAL QUESTION*

*Q9 DISABILITY*

9(a) Is this person mentally/
physically disabled?
Yes-1/No-2
9(b) If ‘Yes’ in 9(a), give code in
the box against 9(b) from the list
below
9(c) If ‘multiple disability’ (Code
‘0’) in 9(b), give maximum three
codes in boxes against 9(c) from
the list below

*LIST*

In Seeing .................................1
In Hearing................................2
In Speech.................................3
In Mobility...............................4
Intellectual disability...............5
Mental illness..........................6
Acid attack victims...................7
Chronic neurological disease ..8
Blood disorder ........................9
Multiple Disability....................0

*Explanation on Q.9 DISABILITY* – For mentally/physically disabled person,
the type of disability is to be
recorded from the options: ‘In Seeing’, ‘In Hearing’, ‘In Speech’, ‘In
Mobility’, ‘Intellectual
disability’, ‘Mental illness’, ‘Acid attack victims’, ‘Chronic Neurological
disease’, ‘Blood
Disorder’, ‘Multiple disabilities’.

The ‘Mental Retardation’ used in 2011 Census has been
renamed as ‘Intellectual disability’.

Further, ‘Acid attack victims’, ‘Chronic Neurological
disease’ and ‘Blood Disorder’ have been added.

The definitions of these type of disability
introduced for the first time is as below -

*Intellectual disability* means a condition characterised by significant
limitation both in
intellectual functioning (reasoning, learning, problem solving) and in
adaptive behaviour
which covers a range of every day, social and practical skills, including—
*(i) "specific learning disabilities*" means a heterogeneous group of
conditions wherein
there is a deficit in processing language, spoken or written, that may
manifest itself as a difficulty to comprehend, speak, read, write, spell,
or to do mathematical
calculations and includes such conditions as perceptual disabilities,
dyslexia,
dysgraphia, dyscalculia, dyspraxia and developmental aphasia; and
*(ii) "autism spectrum disorder" *means a neuro-developmental condition
typically
appearing in the first three years of life that significantly affects a
person's ability
to communicate, understand relationships and relate to others, and is
frequently
associated with unusual or stereotypical rituals or behaviours.
*Acid Attack Victims* means a person disfigured due to violent assaults by
throwing of acid
or similar corrosive substance.

*Disability caused due to Chronic Neurological Conditions, such as multiple
sclerosis and *
*parkinson's disease. *

*(i) "multiple sclerosis"* means an inflammatory, nervous system disease in
which the
myelin sheaths around the axons of nerve cells of the brain and spinal cord
are
damaged, leading to demyelination and affecting the ability of nerve cells
in the
brain and spinal cord to communicate with each other;
*(ii) "parkinson's disease" *means a progressive disease of the nervous
system marked
by tremor, muscular rigidity, and slow, imprecise movement, chiefly
affecting
middle-aged and elderly people associated with degeneration of the basal
ganglia
of the brain and a deficiency of the neurotransmitter dopamine.

*Blood disorder* includes haemophilia, thalassemia and sickle cell disease.

*(i) "haemophilia"* means an inheritable disease, usually affecting only
male but
transmitted by women to their male children, characterised by loss or
impairment
of the normal clotting ability of blood so that a minor would may result in
fatal
bleeding;
*(ii) "thalassemia"* means a group of inherited disorders characterised by
reduced or
absent amounts of haemoglobin.
*(iii) "sickle cell disease" *means a hemolytic disorder characterised by
chronic anemia,
painful events, and various complications

--- END OF EXTRACT ---

To give an overview, the Government has adopted the method of collecting
data on persons with disabilities covered under the schedule of the RPDA
2016. This is an extension of the questions covered under the previous
census. We observe that this method of collecting data has very little
impact in getting a percentage close to what is being presented by
international agencies such as world bank, who etc,. The result is there is
only marginal increase in the percentage of population of persons with
disabilities (i.e) from 2.1 % in 2001 to 2.21 %. This could be due to many
issues concerned with the methodology adopted:

a. adopting Medical diagnosis is an issue given that not many people have
medical diagnosis of their condition,

b. Stigma attached to identification of disability,

c. senior citizens may not identify themselves as persons with disabilities
though having similar issues d. loosing of information when collected
through other family members due to lack of understanding of the condition
and so on.

However, UN has recommended the Washington Group of Disability Survey
method due to its success rates irrespective of regional diversities in
capturing data on persons with disabilities. (
http://www.washingtongroup-disability.com/washington-group-blog/)

This method is tested in India and in other Asian countries. To give 2
recent examples - Kerala Government carried out a survey taking into
consideration the medical diagnosis of all the 21 conditions mentioned in
the schedule of RPDA and could get only 2.2% as population of persons with
disabilities (
https://www.thehindu.com/news/cities/Thiruvananthapuram/nearly-8-lakh-disabled-in-kerala/article7709737.ece).
Whereas CBM carried out a survey in Telengana using the WGDS methodology
with an outcome of 7.5% as population of persons with disabilities (
http://disabilitycentre.lshtm.ac.uk/files/2014/12/India-Country-Report.pdf
).

Since the purpose of census is to gather as many of persons with
disabilities in India that creates space for resources for responsive
policies and programmes, we need to suggest an appropriate methodology.

This is an opportunity for all of us to come together to lobby for having
an appropriate methodology for capturing data on persons with disabilities.

I request you all to further disseminate this information in all your
networks.

We will send in a submission prepared by Equals shortly on this for further
feedback and endorsements.

Thanks & Regards
Meenakshi

-- 
Meenakshi
Coordinator Projects
Equals, Centre for Promotion of Social Justice
Email: [email protected] / [email protected]
Contact: 9840135750

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