Disabled People’s Organizations: A Voice of PwDs in Advocacy

Rachel’s Fellowship is made possible by the Rural India Supporting Trust.  

According to the World Health Organization, “Disabilities is an umbrella term, covering impairments, activity limitations, and participation restrictions” [1]. They define impairment as “a problem in body function or structure,” an activity limitation as “a difficulty encountered by an individual in executing a task or action.” and a participation restriction as “a problem experienced by an individual in involvement in life situations” [2]. Disability thus is “not just a health problem” but “a complex phenomenon, reflecting the interaction between features of a person’s body and features of the society in which he or she lives” [3].

One of the most stigmatized and vulnerable communities in a society are Persons with Disabilities (PwD). There is often the formation of biases and prejudices about PwDs which put them in a very disadvantaged position. Disability in itself as a concept refers to limited opportunities and special needs of individuals, but it does not imply any kind of inferiority of these individuals [4]. The capabilities of PwDs are often not acknowledged by the general masses and often look at them through the lens of sympathy and charity [5].

The PwDs are often looked down upon as incapable, and their disabilities are seen as inability [6]. Most cases of their unemployment are because there are preconceived notion of them as not fit for the job [7]. The common perception of disability as a liability results in frequent discrimination and isolation of PwDs from society [8]. They are mostly seen as a charity case because of their disability [9]. There is also a lack of media coverage. Media is often represented as the voice of the general people and of those who are oppressed and neglected. However, the media has been not very vocal about the issues of PwDs, or has portrayed them in a biased way [10]. Many news that I have come across will consist of some success stories of some PwDs achievements or some NGO or politicians with philanthropy work. However, media have the responsibility to give a proper feedback of the PwDs issues to the masses and also the political class.

Over the last few decades, PwDs have organized themselves into organizations in 100 countries [11]. Disabled People’s Organizations (DPOs) are important for PwDs as it is an important step towards their self-development by providing the opportunity “to develop skills in the negotiation process, organizational abilities, mutual support, information sharing and often vocational skills and opportunities” [12]. Given their vital importance in the process of participation, it is crucial to encourage the development of DPOs [13]. PwDs have been united under the DPOs to use advocacy to influence the decision-makers in government and the society at larger for their rights [14]. PwDs are their own best spokespersons and representatives, as they know best their needs and aspirations [15]. Advocacy is an important activity which is used to influence decisions within political, economic, and social systems and institutions by individual or groups in their interest [16].

Unlike issues relating to gender or children, PwD issues are not in the forefront because most of the PwDs are scattered in different areas. Not all the households will have a PwD but will have women or men or children in their family. PwDs are often not seen and their voices are not heard due to lack of collective force to put forward their issues. Hence, DPOs are an important form of self-organizing that addresses this problem by providing a space for collective voice that advocates for their rights and fights for the right to access to all community services [17]. Through DPOs, PwDs are provided a platform to represent themselves and also the issues and challenges they are facing [18]. DPOs also work at the grassroots level as most PwDs are in the grassroots communities. They come together to address those barriers in the society which restrict them to actively participate in the society. Organizations of PwDs play a role in the development of PwDs’ “skills in the negotiation process, organization, management, proposal and letter-writing” [19]. In addition, these “also provide a forum for mutual support” during skills development [20]. It also helps in creating public awareness about the aspirations, needs, and abilities of PwDs [21]. This awareness is promoted through many of the activities of DPOs: “lobbying government, monitoring service agencies, publishing a newsletter, speaking in the national media, conferences, etc.” [22].

Hence my host organization, Samerth Charitable Trust, has been actively involved in organizing training and workshops for PwDs for creating awareness on the importance of DPOs. Samerth has also been involved in facilitating PwD members for the creations of DPOs.  There has been a creation of DPOs under Samerth and one such DPO is “Jan Manan Kalyan Sangh” which has been actively advocating and representing PwDs issues in Raipur district.

On December 16th, 2016, the Lok Sabha passed “The Rights of Persons with Disabilities Bill.” The bill replaced the existing PwD Act from 1995. Under the new bill, 21 types of disability are recognized from the previous seven [23]. These include: blindness, Low Vision, Leprosy Cured persons, Locomotor Disability, Dwarfism, Intellectual Disability, Mental Illness, Cerebral Palsy, Specific Learning Disabilities, Hearing Impairment  which are Deaf and Hard of Hearing, Muscular Dystrophy, Acid Attack Victim, Parkinson’s disease, Multiple Sclerosis, Thalassemia, Hemophilia, Sickle Cell Disease, Autism Spectrum Disorder, Chronic Neurological conditions, and Multiple Disabilities, including Deaf-Blindness [24]. These 21 types are further divided into six categories of disability which are Physical Disability, Mental Behavior, Intellectual Disability, Blood Disorder, Chronic Neurological Conditions, and Multiple disabilities [24].

Based on these 21 types of disabilities, the Government of India has issued a disability certificate (also known as “PwD certificate,” “PH certificate,” or “handicap certificate”), which is a document that certifies the type and extent of the holder’s disability [25]. In India, this certificate is generally issued by medical boards in government hospitals [26]. It is an important document for PwDs because it entitles the holder to benefits, facilities, and rights [27]. The Government of India and state governments provide a host of facilities and services to PwDs, but all these facilities are available only to those who hold a valid disability certificate [28].

However, it is one of the important challenges that the PwDs in the grassroots level face in their daily lives. Although the “Rights of Persons with Disabilities Bill” was passed in 2016, there are still some issues with its implementation in all the states of India. One of the issues in Chhattisgarh is that most state government doctors are not aware of the 21 types of disabilities. Often PwDs do not receive a certificate although they are eligible. And if the PwDs do not receive their disability certificate, then they are not eligible to most government schemes like “Pension scheme and Ration scheme.” This is one of the basic but very important schemes, especially for PwDs who do not have a source of livelihood and depend highly on it for its benefits. Therefore, DPOs play a very important role in organizing the PwDs and using advocacy for getting their disability certificates.

There are other important challenges of the DPOs which need more advocacy, but I believe that it is important to address the basic necessity first. This is what “Jan Manan Kalyan Sangh” DPO of Raipur has been engaging in under the guidance of Samerth. Now if any PwDs have issues regarding their disability certificates, they post in their DPO Whatsapp groups and collective members of the DPOs along with the PwD advocate the issues together. DPO members like Asha Sahu, Triveni, Geeteshwari, Dhaneshwari, Surekha Sonkar, and Jyoti Sonkar are few among those who have made their disability certificate through the advocacy of the DPOs. Collective voices are heard and are comparatively more effective than any single individual. It also gives them a sense of accountability to tackle their own challenges without feeling the need to depend on others. This is very important in breaking the psychological barriers that PwDs have regarding themselves as not capable or efficient. They can now raise their issues and also represent themselves and their rights which can influence the policy makers of the country. With the formation of DPOs, now PwDs have a voice of their own which is an important step towards inclusion in the bigger society.

References:

  1. “Disabilities.” World Health Organization, 2019. Accessed at: https://www.who.int/topics/disabilities/en.
  2. Ibid.
  3. Ibid.
  4. Ibid.
  5. “Disability and the Media.” United Nations Department of Economic and Social Affairs, 2019. Accessed at: https://www.un.org/development/desa/disabilities/resources/disability-and-the-media.html.
  6. Ibid.
  7. Ibid.
  8. Ibid.
  9. Ibid.
  10. Ibid.
  11. Enns, Henry. “The Role of Organizations of Disabled People: A Disabled Peoples’ International Discussion Paper.” Independent Living Institute, n.d. Accessed at: https://www.independentliving.org/docs5/RoleofOrgDisPeople.html.
  12. Ibid.
  13. Ibid.
  14. Khasnabis C, Heinicke Motsch K, Achu K, et al., eds. “Disabled People’s Organizations.” Community-Based Rehabilitation: CBR Guidelines. Geneva: World Health Organization, 2010. Accessed at: https://www.ncbi.nlm.nih.gov/books/NBK310925.
  15. What is DPO, Disability Rights Fund, http://disabilityrightsfund.org/faq/what-is-a-dpo/
  16. Khasnabis C, Heinicke Motsch K, Achu K, et al., eds. “Disabled People’s Organizations.” Community-Based Rehabilitation: CBR Guidelines. Geneva: World Health Organization, 2010. Accessed at: https://www.ncbi.nlm.nih.gov/books/NBK310925.
  17. Enns, Henry. “The Role of Organizations of Disabled People: A Disabled Peoples’ International Discussion Paper.” Independent Living Institute, n.d. Accessed at: https://www.independentliving.org/docs5/RoleofOrgDisPeople.html.
  18. Ibid.
  19. Ibid.
  20. Ibid.
  21. Ibid.
  22. Ibid.
  23. Kumar, Lalit. “Disability Certificate: All You Need To Know.” WeCapable.com, 29 May 2018. Accessed at: https://wecapable.com/disability-certificate.
  24. Ibid.
  25. Ibid.
  26. Ibid.
  27. Ibid.
  28. Ibid.

Born and brought up in Nagaland, in the Northeastern part of India, Rachel always wondered if people could make use of the abundant natural resources in such a way that it would help improve livelihoods in a sustainable manner. Having completed her graduation in Political Science, she is keenly interested in understanding the intricacies of different aspects of rural areas. This motivated her to pursue a Master’s in Development Studies from Tata Institute of Social Sciences. During these two years, she volunteered in Care and Support Society, Nagaland, gained experiential learning with People Action for Creative Education, Telangana, as part of the course curriculum, and undertook an internship with Rajasthan Grameen Aajeevika Vikas Parishad, Rajasthan. She had worked in broad areas like livelihood for persons with disabilities in Nagaland, rural development in Telangana, health and gender related issues of the rural communities in parts of Rajasthan. Through the AIF Clinton Fellowship, Rachel aspires to gain in-depth knowledge and develop perspectives on development sector initiatives, challenges and probable solutions to these.

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