A personal article on the multiple biases facing disabled women who are infantilised even by the empathetic, medicalised by doctors, denied their sexuality and constantly pressurised by society to be ‘normal’
To begin with, the term ‘physically challenged’ troubles me because I believe everyone is challenged in some way or the other. I would personally use the word ‘disability’. A woman with disability is considered twice undermined -- not only is she a woman, she is also disabled. So we have a situation of double oppression.
At the age of 2, I suffered an attack of polio. Fortunately, my family brought me up in a different way. It was only later that I realised how problematic the construction of ‘womanhood’ and ‘disability’ is.
In the ’70s, when I was a student, it used to be said that all women are disabled, and I went along with the idea. It was only later, when I couldn’t get an IAS form because I was disabled, that I realised that one’s mind was not as important as one’s body. At that point I started understanding things more clearly.
I became interested in various issues quite early in life -- whether it was dowry, terrorism, fundamentalism, nuclear issues, etc. There was a lot of work going on at that time on the whole notion of ‘eve-teasing’. I was prepared, at one level, to cry blue murder at men who whistled at women, because it was tantamount to them objectifying women’s bodies. But when I thought about it a little more, it struck me that nobody even whistled at me. That was my reality: the fact that nobody chose to whistle at me meant that I was not even recognised as a woman, as a reasonably good-looking woman.
At that point, since I wanted to overcome my disability, I also wanted to be brave. Then a point came when I hated the word ‘brave’. People would pay me compliments. They would say: “Anita you are wearing a lovely green dress.” And the question that immediately popped into my mind was: “Why not?” This could, of course, have happened to any woman, but because I was disabled it was very important to me that the whole of me be attractive -- not just the colour of the saris I wore. Also, because there was such a clear dichotomy between non-disabled women and disabled women fighting for issues -- for independence, autonomy, issues like these -- I found myself questioning how disabled women could be independent. Of course we can be independent and autonomous, but to what extent has the support system made space for our independence and autonomy? And why can’t we talk about inter-dependence?
Women are always talking about ‘sisterhood’. The whole notion of sisterhood is something that I have a problem with because if women were ‘natural’ allies of people with disabilities, why did it take them so very long to address this question? And when you talk about gender bias, I think the bias against disability was very clear. And not just in terms of a patriarchal society -- I think women are as patriarchal as men when it comes to disability. The furthest they would go is to say: “Oh, poor thing!” There is a tendency to infantilise people who are disabled, to adopt a tone one would use for a child.
Not only did I go through polio, I went through two open-heart surgeries and now have a metallic valve. I am not valorising this; that is the reality. The cardiac operations meant that the breast region was scarred. I tried to conceal my scars by avoiding clothes with deep necklines and using my dupatta in a way that you could never see my scars. Then, in 2005, I was diagnosed with breast cancer. When I went through breast cancer I really felt that my ‘womanhood’ was in question because I had always believed that my breasts were the best part of my body. So it was not just the scars caused by the heart surgery that I had to get used to, but the fact that I would have no breasts.
I was very clear -- you could say this is a form of gender bias too -- that I would go in for a lipectomy rather than a mastectomy. Why? Because I was scared of the way people looked at me. This ‘gaze’ -- and I consciously use the term ‘gaze’ -- was strong. And it was not only because of the wheelchair; even when I did not use a wheelchair, it was strong. There was no hiding my gait, it is slanted. Try as I might to be like everyone else, I could never succeed.
I drive a hand-driven car. I can get into the car; I can drive. I drive very well; I have even done rallies as a disabled driver. But the minute I get out of it people look at me a certain way. It isn’t as if they do not appreciate what I am doing, but the ‘gaze’ is unmistakable. It says: How come a woman who drives a car has to use a wheelchair?
That gaze which indicates that you are different doesn’t only come from men; women too look at you in a particular way. They look at you as if to ask: Are you normal? Some of them actually ask you outright. This plays out in different situations -- in the way doctors approach us, for instance. I was once talking with a fellow disabled person, and she revealed a personal experience. When she got married and couldn’t have intercourse, she consulted a gynaecologist. The doctor responded abruptly by saying: “Oh, very sad. Polio does this. Maybe intercourse is not possible because the pelvic muscles are affected.” Her words shocked my friend who wanted to know why this should be the case. The doctor then said as an afterthought: “Let me give you some jelly, maybe it will help.”
There are two ways in which bias against disabled women creeps into this story. One, it is the woman who has gone to the gynaecologist, not the man. Invariably, it is the woman who gets medicalised. Secondly, consider the attitude of the gynaecologist. Her prescription for a tube of jelly did help my friend. For the doctor, it was just a question of understanding the problem. Instead of explaining to my friend that intercourse could be difficult for any woman, especially if she is a virgin, she chose to highlight the fact that intercourse for women affected by polio may not be possible at all. This is what medical experts routinely do. Most of them only try to ‘cure’ us in a particular way; they have never given a thought to our bodies, our needs.
Feminists do talk about sexuality. Freud once observed that the body is polymorphous; sexuality can come everywhere. So why the focus on genital intercourse? All non-disabled women realise this, so why is it that the question comes up only vis-à-vis the disabled? That is why I never miss an opportunity to interact with my feminist friends, because I believe it is important for them to understand how issues of the body need to be considered. For feminists, the body has always been an issue. Right from the 19th century, we have been talking about the body. Yet they believe that the disabled body is somehow different.
Many mothers who have disabled daughters come to me and say: “We are going to get hysterectomies done on them.” I ask them why they would want to do this, and they reply that they don’t receive any support from the system. I understand what they mean and I never question them about it. Then they add: “If she becomes pregnant, I will have to look after her as well as her child.” That’s when I say: “That means you are acknowledging that abuse will happen.” Then they may say they can’t always be around their daughter to protect her. I tell them: “You are in a way legitimising abuse.” They reply that they are helpless.
I can understand the anxiety of these mothers, but I cannot understand society. Isn’t it the responsibility of society to create the necessary support structures? Look at the Convention on the Rights of Persons with Disabilities. It states that disabled people have legal rights, which means any woman has the right not to have a hysterectomy. Yet nobody talks about that. The bias persists. How do we get the point across that we don’t want to be abused, but we may also want to have a child?
This brings us to another important issue. How do disabled women get married? How do they have children? I have done very well in my life, but my one regret is that I don’t have children. Only once did my father say: “Let’s try and put out a matrimonial advertisement.” You may ask me why I can’t marry a disabled person. Yes, I could do that, but why should I marry only a disabled person? When replies to the ad came in, my father threw them all away saying they were not suitable. They were all from people in difficult circumstances looking for companionship. But they were also doing something else: they were making me compromise on the issue of marriage. To say that you should marry only a disabled person or someone who has had serious challenges in life is simply unacceptable. If I can be marginalised in this particular way, you can imagine the plight of disabled women who have not even stepped out of their homes. It’s easier for men because, typically, they marry non-disabled women. I am not sure whether my father, for all his sensitivity, would ever have entertained the thought of any of his sons marrying disabled girls. So it is the beliefs of the family also that one needs to question.
My father also suggested at some point that I should adopt a child, if I really wanted one. I went to an agency in Delhi with an activist working on adoption issues. When I looked at a young 10-day-old baby there I really felt like reaching out to it. I told the authorities at the institution that I was keen to adopt a child. But I had to be honest about myself. They said it was not possible for me to adopt a child. What’s more, a few of my relatives came up to me and asked me why I would want to impose a child on them. They were right, of course, in some ways. This is a concern, because, in a joint family, responsibilities of this nature are shared. But they were also wrong.
Of course, nothing I say can take away what my family has done for me. They have given me an identity, which I have also worked hard to acquire, but without help from my family things would have been so much tougher. My mother, in fact, fought for me. She went to my school and said: “My daughter will participate in the annual school functions otherwise she will feel inferior to her classmates.” My father would tell me: “Don’t ask the ‘why me?’ question, because the ‘why me?’ question applies to everybody. Ask yourself instead, ‘Why not me?’” He was a lovely man, and he was my only friend.
At some juncture, I told him I had a boyfriend and this raised a very serious morality question. When I asked him about it, he told me to refer to the Krishna-Arjun discourse. I replied that I was not asking Krishna, I was asking him. He said: “Well, I am not going to drop you to his place; that would be too much for me. But if you want to go to him, you go. Just don’t tell me about it.” He was giving me a way out, sanctioning it in a way.
I have experimented with my life, but always under cover. The men too went along with these ‘undercover’ situations. The bias here is that you can’t be open. Also, clearly, they are using you in a sense, although I quickly realised that I was using them as well.
Disability is visible -- in the Foucauldian understanding that the visibility is very clear and the surveillance too is very clear. This is something we really have to think about. I think women with disabilities should raise a number of points -- about education, employment, recreation, loving, sexuality. All of these are very important to women with disabilities. Because they are so clearly dependent on the family, the mother specifically, they are also oppressed in certain ways. There is a dichotomy between the mother and the disabled child, between the role of care-giving and the role of receiving care. Feminists have focused on the care-giver, including mothers. They talk, in a very clear Marxist sense, about unpaid work, etc. But what about the recipient? Care-receivers also need to be brought into the picture.
It’s not as if we can’t do anything for you. I teach a class of 46 students and I try to bring in not just the text but my experiential world. Somewhere, society is trying to ‘normalise’ us. And this normalising means that we must never question; it means we must always remain under patriarchal hierarchies.
But it is not just patriarchal hegemonies that disable us in particular, but the normative hegemony. This may be difficult to understand for non-disabled people. For instance, most people talk about serious issues like lack of water, etc, but forget that there are disability issues even within these larger discourses. For example, if a glass of drinking water is not clean for a visually impaired woman, she will have no way of knowing what she is drinking.
Feminists use the metaphor of disability to explain their situation -- they talk of the ‘crippling’ effect of something, the ‘blinding’ impact of other things. When you say all women are disabled, it is a very good way to see things. You are trying to understand the situation of women qua disability. But if you use this metaphor, it should also have the potential for emancipation. When we talk of the ‘disability of being women’, we shouldn’t stop there. We should try and understand what disability is for the disabled woman. If we can mutually understand how women are disabled, and how the disabled are women, we will have reached a point that is very emancipatory. The disability metaphor needs to be problematised.
Another very important thing is to run academic courses that teach the epistemology of disability, just as we have courses on the epistemology of womanhood. What is disability? It is not just about concessional issues, it is not just about medicalisation, it is also about society. I have used the term ‘temporarily able-bodied’. We are all ‘temporarily able-bodied’, and we also need to remember that disability does not respect any religion, caste, culture, gender. Anyone can be disabled, men or women. But women get marginalised further, there’s no doubt about that.
To live my life I need a level playing field in which I can be as abled, or as disabled, as anyone else. I need education, I need employment. You want to presume that we are all sisters. Then try and understand our reality. If you are my sister, then be my sister in every way. Somewhere you exclude me. I remember a phrase from the civil rights movement in response to the Jim Crow laws, and I use it all the time: ‘equal but separate’. We believe in equality, but a separate reality. That is not true equality.
Everyone knows that as people age they experience disability. It is only then that they consider it. If they had understood disability at every phase of their lives, they would have created structures to address those difficulties.
It is a difficult world, not only for the disabled. But I do need to state that although I don’t consider myself disabled, I am disabled. I am disabled because I have to fight for an equal world.
(Anita Ghai is Professor of Psychology at the Jesus and Mary College, New Delhi. She is also an active campaigner for disabled women’s rights in India)
Infochange News & Features, December 2012