Advocacy

This page attempts to answer the following questions about advocacy for persons with disabilities, specifically for persons with deafblindness, in India:

  • What issues do we want to advocate for?
  • Which government agencies have been/should be approached for specific issues?
  • What is the history/timeline of advocacy for persons with disabilities? What is the timeline of successes?
  • What requests have been made to the government to improve the lives of persons with deafblindness?
  • Which advocacy strategies worked and which did not work?
  • Which advocacy organizations have had successes in advocating for changes, for the empowerment of persons with deafblindness?

INDEX

  • What requests does the deafblind community want to make to the Indian government
  • Contact information of various government agencies
  • What is Advocacy?
  • Types of Advocacy
  • Examples of Advocacy for Usher syndrome
  • History of advocacy for the deafblind community in India

What requests does the Deafblind Community want to make to the Indian government?

This is a compilation of requests heard from different individuals and organizations, which have not yet been acted on.

Some points to remember when making any advocacy request: 
  • Requesting a change in a law seems more difficult to attain. It is likely easier to request an adjustment to a scheme, or to request for new services. 
  • Point out the huge estimated number of deafblind people in India. (See "Prevalence Rates" in the FAQ page)
  • Usher Syndrome and many other deafblind disorders are not intellectual disabilities
  • When products and services are created for the deafblind, they must be tested and certified by deafblind people (not by hearing and sighted people).
  • There are many government schemes created for the disabled (see list in our Disability Laws, Rights and Schemes page). If there are any new advocacy requests which should have been covered in any of the existing schemes, we need to point that out.

Services for the Deafblind

  • UDID
    • make the application process and the website for online applications easier for DBs to use
    • how is deafblindness recorded in UDID? In the national database that is based on the UDID data?
    • Are specific medical conditions such as Usher syndrome or CHARGE recorded in the UDID database?
  • Disability pension
    • Since deafblindness is a dual sensory impairment, want to request for a higher monthly disability pension for profoundly deafblind
  • Provide training office space for NGOs to train deafblind people on mobility, job skills, computers, English, etc.
    • Initially, the training space can be within government buildings, or in the buildings of private companies. For private companies, it can be part of their Corporate Social Responsibility and/or it can have tax benefits to the company.
    • Eventually, the government can construct buildings spaced out across the country with the sole purpose of empowering the disabled. The space in such buildings can be equally divided and rented out (minimal rent or free) to NGOs helping PwDs. NGOs can use the space to conduct trainings, to sell products produced by PwDs.  Give preference to poor NGOs.
    • The buildings and its location must be accessible to all types of PwDs.
    • The office space must be reassigned to different PwD NGOs at a regular basis, to give equal opportunity to all NGOs. There should not be any favored NGO; no monopoly.
  • E-commerce marketplace to sell products produced by DBs/PwDs:  The existing government-backed e-commerce site https://ondc.org/ should be easy to use for DBs to post products, buy products, etc.
  • Single point of information for all organizations helping the DB community:  Currently, when there is an announcement about a conference or training event for DBs, the organizer sends out an invitation to organizations in its contact list, who in turn may forward that announcement to other organizations. We propose that the DEPwD create a e-mailing list (eg. via Google Groups) of organizations (NGOs, schools, product developers, researchers, etc) serving the DB community. Organizations can subscribe to be added, post announcements of events, post surveys, etc. This e-mailing list will make the spread of information more efficient and actions can be done faster. DEPWD can also use this e-mailing list to announce new schemes.  By using Google Groups to form this e-mailing list, discussion threads can be created for each announcement.

Laws and Policies

  • Make deafblindness a separate category in the RPwD Act, instead of being categorized under the "Multiple Disabilities" category. 
    • What are the requirements for listing a disability as a separate category? -- ??
      • Justification:
        • Disadvantages of being categorized under "Multiple Disabilities": What benefits were available to the deaf community and the blind community that the deafblind community did not get?
        • Give examples of situations where a government hospital only noted down deafness or blindness, but not both, in the disability certificate. And the consequences of this. 

    Early Detection

    • Make newborn hearing screening mandatory across all public and private hospitals in India
      • Justification: 
        • If hearing loss is detected early, the child can be fitted with hearing aids. This will give a better chance for the child to acquire language skills, learn different ways to  communicate (e.g sign language), better understand what is taught in school. Early detection also prepares the parents better. Parents can learn sign language alongside the child, can better plan and save money for future health expenses, etc. 
        • Search for "screening" in our Publications page for articles related to newborn screening. More justifications are given in those articles.

    Early Education and Intervention

    • Establish a National Center on Deafblindness and state-level deafblind projects similar to those in the US. Collect data on deafblind children (ages 0-21), demographics, causes of deafblindness, educational services offered/availed, usage of hearing devices, etc. 
      • Justification:
        • Deafblindness is a dual sensory disability. Deafblindness is not an intellectual disability.
        • The foundation of all learnings are laid from age 0 to 8. (unicef.org)
        • This type of data collection and annual report will guide the Ministry of Education, Department of Empowerment of Persons with Disabilities, etc. in establishing deafblind education centers in every state, personnel preparation, technical assistance, scholarship, research, etc. 
      • Reference: 2021 National Deafblind Child Count Report (USA)
    • Intervener
    • IEP

    Higher Education

    • To increase the pool of subject teachers who can teach DB college students, recruit DBs (or family members or carers of DBs) who have college degrees in the needed subjects (eg. math, sciences, economics, law, etc), and fast track train them to be teachers for DBs. Do not require BEd, but perhaps create a 6-month teacher training course specifically for DBs.
    • Make SWAYAM courses accessible to the deafblind community, by (1) adding ISL interpretation, (2) making the website accessible to the deafblind community, (3) testing and certifying that the online courses are deafblind-accessible (e.g. can be accessed via refreshable braille devices).    

    Adult Independence 

    • Sign Language Interpreter Service: Provide free ISL Video Relay Service similar to the free Sorenson Video Relay Service provided in the USA (paid for by the TRS Fund of the USA government). 
      • This will allow ISL users to communicate with non-ISL users more quickly than text messaging. 
      • Greece has a similar service as the USA, but the number of free sessions per year is limited. Limited free sessions could also be implemented in India, using the person's UDID as a way to control the number of free sessions.  Limited free sessions is better than nothing.
      • This service can be used by ISL users to attend online classes.  
      • Perhaps use senior students of accredited ISL training courses (e.g. ISLRTC's training) as the interpreters. This will benefit the students (give real world practice).
      • The chosen interpreters still need to undergo training on client confidentially, and sign a non-disclosure agreement. 
    • Tactile Sign Language Training: currently there are no training programs for tactile signing in India. 
      • Requests: (these requests require funding, access to experts and users of tactile signing, and recognition from a government agency)
        • Either create and standardize an Indian-variant of tactile signing, or adopt an established tactile signing approach from another country (e.g. ProTactile from the USA)  
        • Create a non-certified training course for DB individuals, their family members and caregivers
        • Add tactile signing lectures in existing interpreter training courses
        • Create a certified teacher training course for tactile signing
        • Get recognition from a government agency (RCI?) 
      • Justification: Among profoundly deafblind people, tactile signing is the most effective way to communicate.
    • Airline Travel: Make it mandatory for airport personnel to undergo training on how to deal with people with disabilities. Airport personnel include check-in counter personnel, security x-ray personnel, etc. Training should include role play, sensitizing, checking of disability ID, etc.
      • Justification:
      • Examples of lack of accessibility in airline travel services:
        • Divya's video (to be added)

    Healthcare

    • require government and private hospitals (especially big hospitals) to provide ISL interpreters for interpreting complex medical information between doctors/hospital staff and deafblind patients.   
      • Interpreters can provide their services online or in-person
      • Justification:
        • The interpreter must be skilled in medical interpretation, to ensure that the exchange of medical information between the medical staff and the patient is accurate and complete.
      • Requests:
        • Find/Request a government scheme that will provide free/subsidized medical interpretation. Assume that a profoundly deafblind patient who requires tactile signing to bring  their own tactile interpreter.
        • RCI or other organizations shall provide certifications for medical interpretation.
        • At the time of making a doctor's appointment, a patient can request for a medical interpreter to be present online or in-person.
        • Add ISL interpretation to the training of ear doctors (ENT specialists) and eye doctors (retina specialists) 

    Senior Citizens



    Research

    • Request government funding for research on treatments for Retinitis Pigmentosa and/or Usher Syndrome.
      • The US government funds research for treatments. The Usher Syndrome Coalition regularly lobbies the US government to increase research funding.
      • Justification:
        • Show the large estimated number of people affected by RP and USH in India and worldwide. If a successful treatment can be developed in India, it has a huge user base worldwide. [Like vaccines developed in India]
        • Show the estimated number of deafblind and so a potentially huge pool of candidates for clinical trials within India.

    Contact information of various government agencies


    What is Advocacy?

    Advocacy is any action that supports, defends, argues, recommends for a particular cause.


    Types of Advocacy

    • Self-advocacy -- the ability to effectively communicate, negotiate, assert for oneself and one's rights, interests and needs [1, 2, 3]. It requires understanding one's strenghts, weaknesses, rights and responsibilities [4]. By developing self-advocacy skills, individuals can become more independent, confident, and successful in school, work, and life [2]
    • Individual advocacy -- focuses on supporting one or a few individuals to voice their concerns, access information, solve any issues, and identify available options  [5, 6, 7]
    • System advocacy -- focuses on making long-term changes to laws, policies, or practices that impact the rights and interests of a group of people, rather than just a few individuals [8]. System advocacy can be targeted at a local, state or national level [5].

    Examples of advocacy for Usher syndrome

    • Examples of self-advocacy:
      • a college student requesting a teacher to provide lecture notes in digital form
      • a deafblind traveller negotiating with airline staff to allow him to travel by himself, as he had done so many times in the past
    • Examples of individual advocacy:
      • a parent requesting school staff for specific accomodations for their Usher child
      • individuals helping specific deafblind members to sell their products so they can earn a living and be financially independent
    • Examples of system advocacy:
      • a group of organizations requesting government agencies to recognize deafblindness as a separate disability category
      • organizations helping people with deafblindness understand the laws, their rights, and their benefits, so they can make informed decisions
      • organizations teaching school staff, medical staff, government staff, etc about hearing impairment, vision impairement, and deafblindness, so they can better understand the capabilities and needs of our community 

    History of advocacy for the deafblind community in India

    Here we compile information about system advocacy efforts aimed at improving the lives of deafblind individuals. The goal is to keep track of what changes/improvements have been requested, the targetted agencies, the results (if reported), what worked or did not work, etc. Lessons learned from past efforts can guide future advocacy work. 

    The most recent events are listed first.
    • 2023. Recommendations for Adding ISL To the National Curricular Framework 2023. National Association of the Deaf (NAD).
      • Main request: incorporate ISL as a language subject in the school curriculum 
      • Sent to: [according to this source]
        • Ministry of Education, Department of School Education and Literacy (secy.sel@nic.in)
        • Director, National Council of Educational Research and Training (director.ncert@nic.in, ncf.ncert@ciet.nic.in))
      • Results: 
    • 2021. Deafblind Categorized as Multiple Disability. Why?  Zamir Dhale. SEDB Blog.
      • Main Request: create a separate deafblind category in the RPwD Act, instead of categorizing it under Multiple Disabilities, create a separate disability certificate, and have it recognized by the Health Ministry.
      • Reason: there is no Multiple Disability category for railway/bus ticket concession nor for pension 
      • Sent to:
      • Results:
    • 1999: NCPEDP created the National Disability Network (NDN), a nationwide network of disability organizations, to spread information across India. (Source: deoc.in)  
      • Key Points: 
        • employed a nationwide networking approach (1) to spread awareness and information, and (2) to integrate disability reforms into the policies of various organizations/sectors.  
        • developed partnerships with key organizations across keys sectors like education, employment, etc.
        • Cooperation and coordination insteaf of silos.
    • 1998. NCPEDP proposed (1) Teacher Preparation in Special Education, and (2) Higher Education for Persons with Special Needs. (Source: deoc.in)
      • Key Points: proposed
        • train teachers to cater to special needs students
        • establish Disability Units in universities and colleges
        • accessibility and special equipment for disabled students 
      • Sent to: Minister of Human Resource Development (HRD)
      • Results: In 2005, HRD proposed to the Parliament that education would be disabled-friendly by 2020
    • 1996. Establishment of the National Centre for Promotion of Employment for Disabled People (NCPEDP), an advocacy organization focusing on awareness, accessibility, education, employment and legislation. (Source: deoc.in)
      • Key points:  change of perception of disability from charity and welfare to productivity and empowerment
      • Results:
        • many key NCPEDP achievements listed above
        • systematic step-by-step approach to getting things done: Stage 1: letter sent to authorities. Stage 2: mobilizing the disability community, media, signature campaigns. Stage 3: non-violent dharna and rallies. Stage 4: hunger strikes. 
    • 1995. Passage of the Persons with Disability Act. (Source: deoc.in) 
    • 1994. Birth of disability rights movement in India. (Source: deoc.in)
      • Key points: Disabled Rights Group did "intense lobying, organized press conferences, meetings, protests, sit-ins, street demonstrations"
      • Results: passage of the Act that called for equal opportunities, protection of rights, full participation of persons with disabilities

    Publications on Disability Advocacy:

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