I write to share my experiences, humble observations, and insights after nearly a decade of work as a disabled feminist and activist from India. As I write this, I am preparing to take on the role of the board president at AWID, which is an international feminist membership organization committed to achieving gender equality, sustainable development, and women’s human rights. I believe that I am probably the youngest and the first disabled president the organization has appointed.
It’s a nerve-wracking prospect, but I’m excited. Excited because it marks a high point in what has been almost a decade of struggle and activism as I have worked to identify ways of expressing disability, gender, and sexuality rights together, marking progress for women with disabilities. And I’m hoping that in AWID, the Association for Women’s Rights in Development, I’ve found partners who will be prepared to move hand in hand with me in dismantling discrimination against women with disabilities and against those living with other marginalized identities.
In these years as an activist working on disability rights and gender justice, my work has spanned research, writing, training, campaigns, advocacy, and art. I have worked to raise the profile of issues at the intersection of disability and gender through op-eds, journal articles, and lectures in national and international forums. I have conducted trainings, delivered talks, and organized events across five continents.
In addition to this, some of my current country-level work includes being a member of the core group on persons with disabilities and elderly persons of the National Human Rights Commission. At the global level, not only was I elected to the board of AWID, but I have also been appointed to the UN Women Executive Director’s Civil Society Advisory Group, and I sit on the advisory board of VOICE, a grant-making project by the Dutch Ministry. All of this has given me an opportunity to bring the global and local together and traverse and learn from diverse organizations and ways of working and engagement.
In my personal journey, I was not always disabled. I acquired my disability at 15, when I started losing my sight and was learning to live a full life with my disability. It was then that I promised myself that I would work to extend opportunities for growth to other people with disabilities, particularly women with disabilities who did not have access to the family structure, resources, and privileges I drew upon for support. To take this commitment forward and to fill some of the many gaps that I saw through my work, I launched my nonprofit Rising Flame in September 2017.
Intersectionality was where I began my activism. I did not start as a student of humanities or a graduate of social sciences; I came in from a mass media lens where stories were at the center of my work, freelancing for magazines, newspapers, and online portals. For me, writing feature articles on women meant all women, those with disabilities and without, women that cut across socio-economic classes, caste, and religious backgrounds.
Therefore, it took me time to recognize the uniqueness of the project that the women’s rights organization I was working for had undertaken. It was a project on women with disabilities. I knew that we didn’t hear voices of women with disabilities—not enough, or not at all in many situations and on many issues—but I had not fathomed the depth or breadth of the chasm they had slipped into: the chasm between women’s rights and disability rights.
As a young disabled woman, I was struggling to work at the intersection of disability, gender, sexuality, and violence because information on these intersections was nonexistent or completely inaccessible, in addition to being hushed because of the taboo on sexuality in the cultural conservatism of India and South Asia. What I was struggling even more with was the space to belong. For me, in my head, I belonged to both movements—those for women’s rights and disability rights—but neither my identity nor my work was fully recognized or embraced by either. Basically, all women did not always mean anything for a woman like me. For example, society would agree that all women should be safe, but specific stigma that women with disabilities face around their gender, disability, and sexuality would not be addressed, and their safety would not be on the agenda at all.
This was a phenomenon that was a reality in the lives of millions of women with disabilities in my country and around the world. The disability rights movement would refuse to have a gendered lens and acknowledge the multiple and intersecting forms of discrimination and challenges that women with disabilities faced, let alone address their specific needs or rights. The disability rights agenda was and is clear: accessibility, education, employment, and inclusion, but none of it was approached in a gender-inclusive or sensitive manner. Then and today, many leading activists say, “You are talking about women’s rights when you talk about women with disabilities, and that agenda is not concerned with our issues of accessibility or employment,” or perhaps if they were more politically correct they would not say it in so many words. The patriarchy has been so embedded and remains so unchallenged and eroded that women with disabilities still find themselves unheard, and to a large extent invisible, particularly in the leadership and decision-making in the movement at large.
I turned automatically then to the women’s rights movement, and in my enthusiasm I forgot that they carried a lot of the social misconceptions and stigma around women with disabilities. For them, fighting for women’s rights meant establishing that women were also as strong and as capable as men, a premise that automatically excluded those living with disabled bodies and minds. So in the women’s rights space, I heard, felt, and sensed the discomfort that was present. The majority of actors would not want to engage for various reasons: too unknown a terrain, too much resistance, too little initiative to expand and understand, and so on. Those who liked to engage either came from a very ableist lens or were satisfied with a token of inclusion. For example, most women’s rights conferences would have one panel for marginalized voices where and only where your voice was given a space or considered valid. As a young disabled woman and an activist working on the intersection of disability, gender, and sexuality, I found myself being included in programs by some organizations as a token gesture. In some organizations, the front-facing roles were given to me to project inclusion, but the leadership rested on people with a very negligible understanding of the issue. Thus, the program would remain ableist in its approach, and there wasn’t a shift in the situation for women with disabilities.
But what I realized was that as a young activist with relatively few years of experience and limited access to mainstream spaces, this token space and attempt to use my identity had to be permitted in order to influence organizations, some peers, funders, and programs. At the outset this was fine, and I swallowed many token pieces as opportunities to make a difference, but gradually the larger questions of, “Can you afford to be used at the cost of advancing the issue? Is the issue really being advanced? Where do you put your foot down? Where do you negotiate further?” started haunting me. They still do.
One of the biggest challenges in the women’s rights movement was for them to understand and accept that disability was not a homogenous group and that each person with disabilities had his or her set of reasonable accommodations that would be needed. But since the lack of comprehension of this concept was deeply ingrained, many actors in the women’s rights movement engaged only with those women with disabilities who fit most closely with “normal” women, those who were high-functioning and had low support needs. As a blind woman who had learnt to be functional at my highest capacity, I recognized my privilege and the pressures that came with it. But the bigger problem is that the confluence of these opportunities of inclusion, albeit offered as a token, for disabled individuals who are the closest to being “normal,” and the external environment, strengthen the power hierarchy that already exists between all disabilities, where blind individuals and those with locomotor disabilities are perhaps at the top of the ladder, and the most marginalized are those with developmental and intellectual disabilities, those with severe and multiple disabilities, and so on.
I realized that the women’s rights movement or many actors in the movement were suffering from not only a lack of empathy but also the inability to understand inclusion and be an ally. Being an ally meant giving up the space and stepping down, listening to, and supporting women with disabilities at various levels. Non-disabled women recognize that in a patriarchal society men should recognize their privileges and step down to share the space with women. Similarly, women without disabilities would have to step back and let women with disabilities decide what to do and what is needed, but this has not yet been accepted fully.
The landscape has only changed very gradually. We do have some allies who are deliberate in their inclusion. Yet a few months ago, sitting at an Internet rights and feminist issues meeting after presenting about online spaces and women with disabilities, I realized that we mirror what has already happened, particularly when newer conversations come up. In conversations about online violence, digital security, and Internet rights, women with disabilities are mostly not considered or present at all. If they are present, they may not be heard or may be heard but not included. Inclusion is when the issues don’t remain “their issues” and become “our issues.”
The Walk with AWID
I will outline some of the contexts of intersectional work that I was engaged in to shed light on how interesting and unique this journey with AWID has been for me. AWID is an international feminist membership organization committed to achieving gender equality, sustainable development and women’s human rights. Perhaps AWID was working toward inclusion for women with disabilities and was organizationally and personally ready to make the commitment toward this when the group invited me to join the international planning committee to co-design the International Forum. The executive director and team said, “Tell us what to do. We are willing and we need guidance to make inclusion happen. We cannot and do not want to undertake this journey without women with disabilities.” This was in sync with the disability rights agenda of “nothing about us without us” and pretty much the way I would have worked. With AWID’s request came the realization in me that I could not represent the movement. As an attempt toward fair inclusion of such a diverse group of women with different disabilities and varied socio-economic, cultural, geographic, and other demographic factors, I suggested the creation of a sub-advisory group online to enable us to design a holistic, inclusive, and useful engagement for women with disabilities at the Forum, and AWID agreed.
We had two International Planning Committee meetings in the lead-up to the Forum, which were to be held in Bahia, situated in northeast Brazil. From Mumbai, where I am based, it meant three flights and 36 hours of travel. I was going to face many challenges on this long trip, including scary moments of being left alone by airport staff and other complications with assistance at the airport, particularly because I was not familiar with the language. The board chair then, Myrna, a fantastic feminist who was also on the International Planning Committee, heard the extreme difficulties that I would face in reaching the destination—narrated with a lot of adventurous warmth—and would insist that I travel with someone. The same words were echoed by my colleague and mentor and a wonderful disabled feminist and academician, Janet Price. I remember lightly telling Janet that it was very easy for non-disabled people to confuse reasonable accommodation and support with dependence and incapability. But every time we would discuss the subject, this would be my default response and I would move on.
Years later I deconstructed the reason for my behavior. Besides the fact that I love my independence and am not quite fond of the idea of having one person shadow me all the time, a small yet significant percentage of this behavior stemmed from past experiences of the women’s rights movement, the behavior that unless a woman with a disability was high functioning, the space wouldn’t be shared with her. I wasn’t worried that the space would slip out of my hands; I was more worried because I felt responsible. Since I was an activist and very conscious of my privilege, including that of my disability—which was less marginalized and stigmatized than many other disabilities—I would take it as my responsibility to step into a space, even if at a great personal inconvenience and difficulty, and advocate for more inclusion for better support, and for greater diversity for other women with disabilities. I had not understood, until much to later: how much pressure the exclusion of women with disabilities by the movement would exert on women like me. It is true of many marginalized groups, that they do not get the space to be average. To be included they need to fit into one of two polarities: superhuman or really “disabled.” The former group becomes convenient to include and the latter convenient to showcase.
I remember that at one of the meetings I sat with the AWID team and said that inclusion would mean intentional steps to mobilize and support participation. We made accessibility non-negotiable and that all women with disabilities supported by scholarships would be entitled to have an assistant. There was no question asked of how and why these measures would be important; there was no half-hearted attempt to “let us compromise on x and provide only y,” there was no excuse that “this is too resource-intensive, so we could leave them out.” We all acknowledged the challenges and put in the teamwork toward making things happen. And the 2016 AWID Forum saw a significant number of women with disabilities, including a disability hub to self-organize additional activities.
Soon after, I was elected globally by AWID members to the AWID board. At the first board meeting, we were inputting into some document draft and I remarked on the absence of the word “intersectional” in the introduction of the document. I remember Charlotte Bunch, the board chair, then said to me that they didn’t know what kind of feminism it would be if it was not intersectional. And the faith in AWID’s commitment to moving toward inclusion solidified for me.
With a lot of humility, I say that for me starting May 2019, it will be a journey of learning and exploration to be—I believe—the youngest and the first disabled president of the AWID board, a board which values north and south, which has a multigenerational approach, and where members value expertise from all people, not irrespective of but because of their constituencies, regions, issues, orientations, abilities, and ethnicities. The most important thing that resonates with me at AWID is the consciousness of the organization and the leadership at every stage to be fair, more inclusive, and more representative and to treat inclusion as a learning process and a way of being.
This article was first published in an Introduction to Sociology textbook by Ashbury Publishing, a publishing house that takes an innovative, collaborative approach to producing college textbooks.
This essay is also available in audio format: