1. Sub theme 2: Theorising from practice and building knowledge
Communicating disability through networking-
DrV.Janaki, Chennai drvj70@gmail.com
‘Alone we can very little, together we can do so much…’ said
Helen Keller, one of the most iconic influencers of the disability
movement. This is especially true when it comes to the issue
of disability, people with disabilities, inclusion and access
issues,education, employment… the whole gamut of life spaces
in today’s changing world.
Disability is a complex, interconnected, biomedical, social and
environmental phenomenon, interrelated by a web of issues
that transcends the personal lives of individuals. Just as one
says, the whole is the sum of its parts, disability too is a
compartmentalized fact of life. It is a term that is variously
understood/perceived as: handicap, disorder, problem, liability,
to be helped, to overcome; these are some commonly used/
associated words when people discuss disability. The person is
never the focus, only the disability. This is reinforced in
personal interactions at various points( attitudes,behavior,
situations, different settings) mass media images, language,
art and crafts and so on.
Towards inclusion, access..equity..
The productive utilization of all available human resources- the
largely ignored, hitherto untapped potentialities of pwd’s-
works on the premise,’every individual is unique’. This has
been the single motivating factor for the disability movement

2. and the activists have all gelled well to prove a cohesive and
formidable force to reckon with in terms of negotiating for their
human rights to dignity, self expression, right to movement
and much more…
Inclusion is
• a philosophy built on the belief that all people are equal and
should be respected and valued, as an issue of basic human
rights.
• an "unending set of processes" in which children and adults
with disabilities have the opportunity to participate fully in ALL
community activities offered to people who do not have
disabilities.
(UNESCO - at the UN-Committee on Rights of the Child,
October 6, 1997 - Centre for Human Rights, Geneva)
The present scenario…
Disability, today, is much more than just a physical problem.
The abilities, capacities of the person, irrespective of the
disability- visual, hearing, locomotor, deafblindness, sensory-
neural impairments, mental, intellectual, developmental and
learning disorders, are all part of the affected person.
Labellinga disabled person as someone who is incapable of
decision making, who is not entitled to live a life on his or her
own terms, or to make choices, or has the right to entitlements
that every other individual has and more… is today
unacceptable thanks to awareness campaigns and sensitization
by organizations and other stake holders. They are barriers to
the growth, acceptance and inclusion of the disabled person in
mainstream society. Persons with disabilitiesare today
synonymous with the huge, invisible and latent and untapped

3. human resource, in terms of their abilities and potentialities.
They are at the vanguard of great social innovations, breaking
barriers, surmounting all odds at every stage in their march
towards inclusion and access to every human activity on a daily
basis. Some of the greatest achievers in today’s technology
driven landscape are persons with disabilities(pwd’s)- it’s all
there in the news….a person climbed Mount Everest,(locomotor
disability), a music composer(autism), lawyers, educationists….
More…all it takes is an open mind and heart… to be sensitive
and sensible too….
Information technology, the great leveller and enabler in
bridging the discrimination-equality divide, has marked the
visibility of persons with disabilities, creating barrier free
environments, forged partnerships and encouraged
participation, inclusion and acceptance, change and
development. Unity in Diversity, the axiom denoting India is
reflective of understanding disability in the new millennium.
Technology has thus far proved to be a gamechanger in many
ways, more so for persons with various disabilities. Breaking
the so called socio-cultural-physical, environmental barriers,
changing mindsets and attitudes through awareness and
advocacy has been the raison d’etre of various activists and
committed individuals and groups across diverse spectrums,
streams of life activities in India and throughout the world. It
has been and continues to be the symbolic tool of
empowerment of pwd’s in negotiating their human rights to a
life of dignity, in realizing their potentialities and maximizing
the same, throwing up challenges and solutions alike.
India is a signatory to both the United Nations Convention on
the Rights of Persons with Disabilities, 2006(UNCPRD) and
BiwakoMillenium Framework towards an Inclusive, Barrier-free
and Rights based society for Persons with disabilities in Asia

4. and the Pacific,2002. Towards realizing these humane goals,
the Government as well as NGO’s work in tandem as well as
collaboratively/collectively on various issues at different
intervals with some success. However, the efforts have been
sporadic and largely unsustainable, due to official and public
apathy, lack of a strong enforcement machinery, a dedicated
and committed wing for information dissemination, red tapism,
communication gaffes and more. By and large, the initiatives
are wholly ‘welfarist’ schemes, restricted to doles and freebies
at every public function that demands it- provision of hearing
aids, wheel-chairs and other devices for the poor and more
marginalized amongst the disabled population.
Multiple vulnerabilities….marginal identities……
Approximately 3-4% of the population in India according to
Census of 2001 are persons with various disabilities. The large
majority amongst the disabled population continue to languish
at the fringes of development, participation and decision-
making…devalued in terms of media imagery-‘afterthought’ as
well at the policy and implementation levels.
Empowerment is even today, just a word to pay lip service,
since in recent times, the government has largely and
selectively ignored sustained efforts/protests by the disabled
organisations, when it came to violations of the rights of the
pwd’s. This is in sharp and glaring contrast to protests against
FDI, scams and political scamsters, corruption and other
issues..which will make or break the government at the
turnstiles.
Despite the myriadand contrasting scenarios prevailing today,
a dedicated and committed group of disability activists from
across a wide spectrum of disabilities in the country, have

5. initiated, sustained and continue to engage with all stake
holders towards realization of implementating the UNCPRD as
well as the disability act including its modifications.
It is indeed remarkable how the group has garnered
tremendous response and success in this herculean task of
ensuring inclusion and equity of pwd’s in every sphere of
human activity. Slow but sure and firm steps, the manner and
approach of the group is worthy of a management manual, a
teaching aid, of communication strategies….. all through the
online way as well as the personal interaction and equation
with everyone in the group. Being a part of this online
community of activists has been a real eye opener. It makes
me wonder, ‘who really is disabled?’ is it disabling
conditions,(an unfriendly and inhospitable socio-economic-
political- cultural environment, inaccessible human activity
spaces) or disabled mindsets(prejudices, biases, apathy,
indifference), or a skewed and flawed political system that
thrives on sychopancy, dogmatic beliefs) or a sloppy and ill-
advicedplanning and utter mismanagement of funds and
resources, or the deeply entrenched societal apathy that still
marks the Indian citizenry’s attitudes to civilian issues of
inclusion and access? …without any doubt, these continue to be
the bane of realistic progress and inclusion of a critical yet
vibrant section of the Indian population.
Today, thanks to the sustained efforts of the various disability
activists and their organisations,utilisng ICT (Information,
Communication Technology) and the legal framework, there is
a greater visibility towards issues affecting persons with
various disabilities- with regard to problems, needs, related to
access, info, basic life needs….issues
achievements,problemsetc highlighted in mass media, cinema,
social media like facebook, youtube etc. This has provided a
window of opportunity and hope that all issues of access and

6. inclusion of pwd’s will be addressed, debated in the public fora.
This is as it should be.
Googlegroups were a response to a felt need to synchronise,
co-ordinate, network, negotiate, collaborate, share….. unity in
diversity- myriad differences in perception, various disabilities
of individuals and organisations working towards inclusion in
various capacities, in multifarious socio-economic-linguistic-
cultural-regional-situations…located in societal set up…
flight-wethepwd@googlegroups.com,
accessiblechennaimetro@googlegroups.com
Genesis- much information, need to filter the same,
collaborate and network, share, engage, negotiate amongst
organisations, persons with disability across the length and
breadth of India..raison’d’tre- United Nations convention on the
Rights of persons with disabilities(UNCPRD)
Besides a series of regular incidents of harassment and denial
of right to privacy and mobility to disability activists who had a
valid ticket
- Felt need to act as a pressure group- community of
activists with and without disabilities..committed to the
issues…according to the UN mandate and the PD act
- To collaborate with government departments and other
decision making bodies like various committees on issues of
access and inclusion vis avispwd’s

7. - Lobbying for inclusion, accessible infrastructure,
accessible transportation, accessible information,lobbying for
change in awareness creation and attitudinal change
- Networking with other groups. Ngo’s, individuals
- Acknowledging the differences in perception and accepting
the same with regard to different issues affecting pwd’s..across
the spectrum of gender and disabilities
- Rethinking strategies to get the message across
- Information, communication and technology(ICT). The
mantra of success..a game changer…bridging the info divide
Modus operandi…
# emailing an issue- highlighted in the print media/sourced
info from those in the know
# soliciting views/suggestions of group members,
#sharing…putting them together..conducting audits wherever
possible eg access audits , finding solutions based on them and
communicating the same to the group..
#submissions of draft guidelines, suggestions after
consultations with the group
#workshops, consultation-discussion wherever possible
#meeting up with the policy level/implementation officials….to
get the groups message across at every stage..towards
inclusion
#Respecting everyone’s views/opinions by incorporating the
same where relevant….
All according to the relevant legal provisions and
framework..prioritising the fact of the need to engage with all
stake holders/persons, including government n bureaucracy on
a consistent basis- an ongoing agenda

8. #right to know-infomation access to information, resources,
highlighting the same, informed consent..issues affecting pwd’s
#dissemination of the info…keeping things simple…
#understanding the dichotomy between theory and practice of
disability built on the prism of the welfarist model of
development and acknowledging and accepting the diversity
amongst the disability populace
#negotiating the ignorance and apathy on the part of the
public as well as the administration with respect to
issues/problems/needs of the pwd’s and addressing the same
through working together with every stake holder including the
media..
#presence in social media- facebook, twitter, linkedin… both in
individual n group capacities, sharing info…leveraging on
contacts….
The issues at stake…and action so far…
-accessibility issues related to banking, broadcasting, voting
rights,
-Copyright law
-right to education- inclusive education
-Draft national policy for children

9. -Industrial policy
-indecent representation of women act
-representing views to the Justice J.S.Verma committee on
sexual offences against women, especially women with
disabilities
-Draft sports development bill
-Universal single number in emergencies…
National design for buildings… access issues, Chennai metro
rail..
Success stories
-incorporation of universal design/separate facilities suggested
by disability activists in Chennai metro rail
-Justice Verma committee had included suggestions for
protection of women with disabilities- criminal law amendment
-accessible features in print media
-national child policy- concerns of children with disabilities
noted
These are some noteworthy success stories- but the process
for greater inclusion and access is a continuing agenda…
Synergy of minds and hearts..thegoogling experience-
what it has done and shown so far
- Leveraging on the information highway
- At the click of a mouse..instant connectivity

10. - Is a veritable clearing house of info and resources
- Clearing misconceptions, creating awareness and
advocating the same
- Jargons explained, clarified..through group interaction by
email or even personal contact
- Paved the way for consultations with the administration
and policy experts
- Barrier free approach
- Participatory and non-judgemental process of interaction
amongst a large and diverse group of persons with disabilities,
policy and accessibility experts and other professionals.
- Acknowledging the uniqueness of every individual, by
respecting their opinions, suggestions..
- Immense possibilities and opportunities through the gains
made by engaging with decision making authorities in a
sustained manner
- Members are also a part of the various government
committees that look into various issues open to public debate-
cited in print and other media.
SWOT ANALYSIS
STRENGTHS
- Participatory approach
- Non judgemental attitude
- Open to new ideas and information
- Knowledge enhancer
- Enabling environment

11. - breaking barriers of every kind
WEAKNESSES
Question of access and affordability to view the
info/resources for all persons with disabilities(pwd’s)
- Overlapping of issues eg banking access and disability
insurance, media imagery of disability and
- Issues often subsumed by ‘other more important issues’;
changing dynamics of the public sphere of influence vis a vis
media coverage of issues affecting pwd’s as against the ’larger’
and ‘more important so called core issues’ of government
formation, scams and scamsters gaining more prominence.
- participation of all people- with and without disabilities… a
long way to go….confluence of different minds and abilities – a
dire need to enhance opportunities to work cohesively –
breaking more barriers
OPPORTUNITIES
- To be a part of the decision making bodies, representating
the issues for the disability population
- Change agents in terms of awareness and attitudinal
changes in administration, civil society, policy level
- Strong media presence on the social media network..
garnering support
- Petitions, representations on key issues can be utilized on
individual and group basis too-
www.change.orgwww.avaaz.org
THREATS
- continued official and civilian apathy in enforcement

12. -reinforced stereotypes, biases, deeply entrenched social
customs and practices, the social conditioning systems in the
family, in thinking, implementation, media coverage of issues
concerning pwd’s.
- socialization patterns that encourage dependence and
discourage empowerment, independence of persons with
disabilities. Very true despite the visibility of the disability
sector over the past decade.
- discriminatory practices vis a vis male and female child with
a disability
Activist speak…
‘Inclusive policy making and speaking in one voice is a huge
tool in social change and empowerment’ – AmbaSalelkar,
lawyer and activist, Inclusive Planet, Chennai
www.inclusiveplanet.org.in
Emailed views of AmbaSalelkar, Inclusive Planet, one of
the prime movers in the drafting of various policy
considerations
genesis of the formation of the googlegroups,
I think the formation of the group was by Rahul Cherian, the
late founder of Inclusive Planet. He was finding it very difficult
to really gather everyone together and solicit inputs individually,
this gave an opportunity for everyone to contribute and for
everyone to discuss the contributions of others as well
strategies used to highlight used
We compiled a list of NGOs and individual activists and
enthusiasts that we could reach out to every time a policy
intervention presented itself. Many people started asking to be

13. included on these lists. We reached out to different disability
groups, accessibility experts, groups focused on gender and
disability, and groups from both urban and rural sectors to get
a healthy mix. We didn't want to lose out on anyone. We make
sure we credit contributors and supporters in all our
representations.
gains and achievements
The gains have been tremendous. Our policy interventions
would not be complete but for the inputs from this large circle.
I come from a history of psycho social disability, and Rahul
lived with a physical disability. Between the two of us, as much
as we could imagine what problems were faced by persons of
various disabilities, it really takes someone living with those
disabilities to really drive the point home. Policy makers also
really stand up and take notice when interventions are made
by such a large number of groups.
success and failure
It's been mostly happy stories. Many policy interventions on
our side have been sucessful after doing a holistic
representation of the issues concerning persons with disabilities:
The Justice Verma Commission Report and the consequent
amendment to criminal law, the TRAI took note of our raining
concerns with the single-stop emergency number, the National
Child Policy includes the concerns of children with disabilities to
a greater extent, etc.
Failure, to an extent, is to do with the short staff at Inclusive
Planet and the deadlines of these papers, often I can only put

14. them out with a few days to spare for the deadline and so
quality inputs are not possible.
forward/backward mechanisms as a tool of social
change/empowerment
Inclusive policy making and speaking in one voice is a huge
tool in social change and empowerment.
your organisations's web links etc... all about u....and yr work
www.inclusiveplanet.org.in
The road ahead… long,winding, rough terrain..of
opportunities and possibilities…
The little done..the vast undone…..can best depict the current
scenario. Hope continues, the struggle for Access, Inclusion
and Equity to all Persons with Disabilities an ongoing
agenda…different places at different times, sustained and
nurtured at every step…through Technology and Innovation…
Our minds are like parachutes… they function only when
open..beopenminded, flexible..open to change in mind, heart
and spirit… of the immense possibilities, amazing
opportunities..to make a difference in the lives of all persons
with disabilities…at home, at school,in the street, hospitals,
banks, government offices…. through the media.. and
more……together we can…
Feel free to contact me…drvj70@gmail.com.,
Linkedin- linkedin/drvjanaki

15. Facebook- janakiramanathan
Twitter-drvjanaki
Thank you..
Annexure A: Article 9 of the UNCRPD: Accessibility
1. To enable persons with disabilities to live independently and
participate fully in all aspects of life, States Parties shall take
appropriate measures to ensure to persons with disabilities
access, on an equal basis with others, to the physical
environment, to transportation, to information and
communications, including information and communications
technologies and systems, and to other facilities and services
open or provided to the public, both in urban and in rural areas.
These measures, which shall include the identification and
elimination of obstacles and barriers to accessibility, shall apply
to, inter alia:
(a) Buildings, roads, transportation and other indoor and
outdoorfacilities, including schools,
housing, medical facilities and workplaces;
(b) Information, communications and other services, including
electronic services and
emergency services.
2. States Parties shall also take appropriate measures:
(a) To develop, promulgate and monitor the implementation of
minimum standards and
guidelines for the accessibility of facilities and services open or
provided to the public;
(b) To ensure that private entities that offer facilities and
services which are open or provided

16. to the public take into account all aspects of accessibility for
persons with disabilities;
(c) To provide training for stakeholders on accessibility issues
facing persons with disabilities;
(d) To provide in buildings and other facilities open to the
public signage in Braille and in easy to read and understand
forms;
(e) To provide forms of live assistance and intermediaries,
including guides, readers and professional sign language
interpreters, to facilitate accessibility to buildings and other
facilities open to the public;
(f) To promote other appropriate forms of assistance and
support to persons with disabilities
to ensure their access to information;
(g) To promote access for persons with disabilities to new
information and communications
technologies and systems, including the Internet;
(h) To promote the design, development, production and
distribution of accessible
information and communications technologies and systems at
an early stage, so that these
technologies and systems become accessible at minimum cost
External resources- web links…. Sourced from
SightSavers document on Disability and social inclusion
Disability Rights Fund: an extensive list of resource links,
http://www.disabilityrightsfund.org/resources.html

17. Equality and Human Rights Commission: details of UNCRPD in
the UK, http://www.equalityhumanrights.com/human-
rights/international-framework/un-convention-on-therights-of-
persons-with-disabilities/
Include Everybody: campaign on disability and MDGS,
http://www.includeeverybody.org/
International Disability and Development Consortium (IDDC):
http://www.iddcconsortium.net/joomla/
International Information Support Centre: introductory CBR
resources and manuals:
http://asksource.ids.ac.uk/cf/keylists/keylist2.cfm?topic=dis&s
earch=QL_DISCBR05
Making It Work: implementing the UNCRPD
http://www.makingitwork-crpd.org/
Syracuse University College of Law: disability law:
http://www.law.syr.edu/lawlibrary/electronic/humanrights.aspx
The Lancet: special issue on disability
http://www.thelancet.com/themed-disability
United Nations Enable: UNCRPD, the MDGs and disability:
http://www.un.org/disabilities/
World Health Organization (WHO) Disability: MDGs and CBR,
http://www.who.int/disabilities/en/
WHO, ILO and UNESCO: CBR Joint position paper 2004,
http://www.who.int/disabilities/cbr/en/
SOME INTERESTING BUT USEFUL LINKS
http://www.disabilityinfo.org/Resources/MNIP/MCR/Internation
alLinks.aspxhttp://www.disabilityinfo.org/Resources/MNIP/MCR
/default.asp

18. Disability Etiquette Links:
Disability Etiquette Tips for Speaker Engagements / Job
Accommodation Network
http://www.jan.wvu.edu/media/etipresent.html
United Spinal Association
http://www.unitedspinal.org/disability-publications-
resources/disability-etiquette/
San Antonio Disability Conversation Etiquette
http://www.sanantonio.gov/publicworks/dao/etiquettehandboo
k2011.aspx#CE
You Tube Videos on Disability Etiquette
Institute for Community Inclusion has six You Tube videos that
tech people to communicate with people with disabilities.
http://www.youtube.com/playlist?list=PL493DE4B58144B586&
feature=plcp
http://inclusiveplanet.org.in/policies
http://www.disabilityindia.com/html/assistivetechnology.html
http://barrierbreak.com/resources/keys-u-see-large-print-
keyboard-a-typing-solution-for-multiple-disabilities