“If you cannot understand that there is something in man which responds to the challenge of this mountain and goes out to meet it, that the struggle is the struggle of life itself upward and forever upward, then you won’t see why we go”. These words by Edmund Hillary, the first person to have stepped on the peak of Mount Everest, along with Tenzing Norgay, leap to mind as I start writing about Dr. Renu Addlakha. They sound just right. I have known Renu for a long time and have never seen her run away from a steep challenge. And there have been many in her life. She has had an acute visual disability since her early childhood. Now well into her fifties, she has also had a number of other illnesses throughout life, associated with her visual disability and otherwise. There have been other obstacles as well. Obstacles of not being comfortable in crossing busy roads; not being able to read for long hours at a stretch; of stereotypes and mis-information about disability; of feeling that her vision will get more limited as years go by. But she has moved avalanches and rock-slides out of her way and marched on with grit. Sometimes she has just walked around the boulders. In a way which most other people, with the advantage of having no disability, would not dare to even dream of. But she has dreamt…both while sleeping and awake. And with her characteristic grit, coolness and determination (which seem almost superhuman sometimes) she has transmuted her and her parents’ dreams to reality. Today she is standing at the peaks of both her personal and professional life. Based in New Delhi, India, she is an internationally respected academician, researcher and author; and also a consultant for many organizations of diverse disciplines. She lives a full life and manages to dictate her own terms single-handedly. But reaching here was not easy. As she has often expressed, she has been brought to the brink of hopelessness many times in her life. Sometimes she has pulled herself back with dire action; at other times, waiting it out has helped. But never has she turned back. I feel very proud to have known her, walked with her on some rocky terrains of her life and now to introduce her to the readers of White Print here. A prolific writer, she will tell us about the trail she has carved out for herself, in her own words.
MC: Your research and work have concentrated primarily on issues related to women, disability, psychiatry and public health. You yourself have had an acute visual challenge since your early childhood. Has that drawn your professional interest to these issues? What have been your areas of focus, at different points of time?
Dr. Renu: My work has always been inter-disciplinary and trans-disciplinary in nature. This probably began with my Master’s degree in Social Work which is a professional course. It draws from disciplines like sociology, psychology, economics, political science and management, among others. Subsequently, even though my higher degrees were technically in the discipline of sociology, my topics were again drawn heavily from psychology, and medicine in addition to sociology.
My professional journey has also followed the same trend. I have worked in the diverse but overlapping domains of health, women’s gender and disability studies; within different work spaces like the government, civil society, multilateral and bilateral agencies over the years.
So though it does not seem to me that the diversity has been influenced by my visual disability; but definitely it cannot be denied that it has played a role in my choices.
MC: Having worked with various Indian and international organizations for many years, what do you perceive as the key differences between the organizational programmes for development of women living in different types of regions across the country: tribal, villages, towns, metros?
Dr. Renu: Privileged access is an advantage for urban educated women. However due to absence of adequate sensitization and ad-hoc networking among different agencies, they may not always be able to access opportunities and resources despite ecological proximity. On the other hand, the disadvantages of women living out of the cities are too well known to be repeated here. Nonetheless a handful of persons located in even the most far flung areas may benefit from opportunities if they fall within the catchment area of enterprising NGOs (non-government organizations) or are fortunate enough to be in areas where government agencies are doing their work. But the latter is too random. So the urban rural divide continues to predominate.
MC: You have now been with the Centre for Women’s Development Studies (CWDS) for a number of years, in a senior capacity. Please tell us about its role in bringing issues related to gender and disability to the forefront of both academic discourse and non-academic initiatives?
Dr. Renu: CWDS is primarily a research institution and my work therein has also been largely research-oriented. However the research has been more in the nature of action research resulting not only in the production of academic papers and books but also of advocacy materials such as manuals on sexuality and reproductive health for people with disabilities; and legal empowerment of women with disabilities in India. These materials have been circulated to leading disability NGOs and government departments working on disability in the country.
Due to its historical location, CWDS is itself part of many national and international networks. It is also well-known in the government and funding sectors. Hence the opportunities to advocate for the issue of gender and disability have been umpteen in the diverse arenas of academia. Same is the case with civil society, the corporate world and the non-governmental sectors both nationally and internationally.
MC: You have spent your childhood and early adulthood in different countries. How would you compare the lifestyle of a person with one or more disabilities, in India and in some other countries, especially the western?
Dr. Renu: I was living out of India as a child. My adult life has been mostly in India apart from occasional short trips abroad. A lot has changed in India since my childhood – both for persons with and without disabilities. Hence, I really cannot make a comparative statement but it really depends on our location. For instance, a disabled person from the lower socioeconomic strata may be worse off in the West (state support notwithstanding), as compared to an upper middle class disabled person living in a metro in India.
MC: Over the decades, the specialized facilities to make daily routine easier for persons with different disabilities have increased in the country. Do you perceive them as being sufficient both in terms of quantity and quality, across the different regions? Examples of such facilities could be getting in and out of public vehicles; specially-equipped washrooms; ramps for wheelchairs in restaurants; separate sections in bookshops dedicated to books in Braille etc.
Dr. Renu: You have to have some level of privilege to be able to access the facilities enumerated above. One of them is living in an urban area because most of these facilities are available in large cities. Secondly, even within cities, such facilities are clustered within specific enclaves like airports, high end hotels, convention centers etc. Although more facilities are now emerging in schools, colleges, banks, transport hubs and offices, they are still few and far between.
MC: Whenever a non-disabled person sees a disabled person, the immediate instinct is to start helping her/him with a “difficult” chore, such as opening the car-door for them or holding their hand while climbing the stairs. What do you feel about this?
Dr. Renu: Such actions are rooted in misperceptions about disability and the capacities of disabled persons; they are often borne out of ignorance and ad-hoc thinking. They show some good intention but are patronizing and may not be needed – depending on who is the recipient of such actions. It is better to ask the disabled person upfront what is her need. However, non-disabled persons feel hesitant to do that for fear of being offensive. A lot of the confusion arises out of miscommunication and the lack of an established disability etiquette system.
MC: Stereotypes also hamper the recognition of the problems faced by a person with a disability. Apart from some well-recognized and obvious problems, what are the tensions below the surface you would like to put out in the open?
Dr. Renu: Stereotypes are not always false but they may be based on misperceptions and prejudice. The effort should be focused on dealing with the latter. This effort should be to challenge the negative stereotypes. One example is the stereotype of disabled woman being asexual and this should be challenged by more realistic presentations of the lives of disabled women. While movies like “Margarita with a straw’’ may do this dramatically, more realistic presentations may be more effective.
MC: Do you think that gender and disability sensitivity in early scholastic education and in non-scholastic reading would be influential in bringing about more consistent changes in attitudes, imprinted stereotypes and the resulting behaviour at the individual and societal levels?
Dr. Renu: That may be the case logically because early socialization significantly impacts personality development but I feel constant reinforcements are required throughout the lifecycle for the changes to be made permanent. With regard to non-scholastic reading, I agree with the standard reply of making the central characters disabled and making a conscious effort to remove the linkage between disability, negativity and evil which crops up in fairy tales, religious scriptures and other literary and artistic genres including painting, theatre and poetry.
MC: How can parents work towards strengthening feelings of self-esteem and inclusivity of a disabled child from as early an age as possible?
Dr. Renu: Parents can do a lot to increase the confidence and wellbeing of their disabled child. But in order to do that they have to first overcome their own anger, guilt and unhappiness about having a disabled child. Once these deep-rooted emotions are sorted out and they begin to look at the child not only through the lens of disability, other things will fall in place. Of course, the child will have some specific needs due to the disability which require understanding and management. But then every child has some ‘special’ needs which require understanding and management.
MC: How does the financial status of the family impact the psycho-emotional nurturance it can practically provide to a disabled family member?
Dr. Renu: It may appear obvious that if the family is financially well off, there would be no difficulty in investing in the wellbeing of the disabled member. Furthermore, it is likely that higher educational status should result in better awareness about disability and a subsequent decline in stigma. In seven out of ten cases, this is indeed the case and the disabled persons coming from a well off family would have access to better life opportunities and hence have a better psycho-emotional status than someone from a less well off family. But sometimes families refuse to invest in the wellbeing of their disabled members. This may be especially in the case of a female disabled member even when the resources are available to do so. This is because the power of negative stereotyping is so powerful and the disabled member may in such a situation be actually worse off in all respects than someone similar in a less privileged family.
MC: You have faced other health issues throughout your life. Dealing with them physically and emotionally must have demanded a high level of introspection and self-discipline. Could you share some of this personal space with us? It could prove to be very motivating and insightful.
Dr. Renu: Disability often carries a high probability of secondary health conditions and I have not been spared from that. Apart from normal ups and downs of health, I have had chronic conditions like idiopathic thrombocytopenia (ItP), hypothyroidism asthma among others. And now there are also issues related to aging. I manage them in the same spirit as I have managed other difficulties in life i.e. being proactive, strategic and cautious.
MC: Due to your visual disability, what additional life-challenges did you face in your developmental years? How did you deal with them and emerge as a high-achiever, multi-faceted professional which is a difficult achievement even for those who may not have had to grapple with your challenges? Have you been able to subsume those challenges completely?
Dr. Renu: Lot of challenges came from the family that have not been helpful in developing good levels of self-esteem. An inferiority complex and low esteem linked to my disability have been constant challenges in the journey of life which I continue to struggle with even now in my fifties.
MC: Since the past nearly two years of the ongoing Covid-19 pandemic, all of us have been through extremely stressful times. During these and at other difficult points of time, how do you keep yourself relaxed, serene and self-motivated?
Dr. Renu: I have been an only child and now both my parents have passed on. So I do not have any family support. But I am fortunate to have supportive friends and colleagues. The pandemic posed many challenges especially when I contracted the infection and had to be hospitalized. However, my own vigilance, determination, independent spirit and the support of well-wishers have helped me pull through. I am fortunate in having a high level of resilience and the capacity to both be on my own and do things on my own.
Thank you so much Dr. Renu for your realistic insights and inspiring words!