“We, the ones who are challenged, need to be heard. To be seen not as a disability but as a person who has and will continue to bloom. To be seen not only as a handicap but as a well intact human being.” - Robert M. Hensel
Dr. Shilpaa Anand is a professor and researcher in the areas of literary and cultural disability studies, the historiography of disability, and culturally different concepts of corporeality. She moderates a vibrant email group called ‘Disability Studies India’ and has co-edited multiple issues on disability for the web magazine ‘Cafe Dissensus’.
Q. You're a researcher in the area of cultural and literary disability studies which is a unique avenue. What made you take up this topic for research?
That's a long story. But it's been a series of different interests that finally led to this area. So one of the initial areas I worked in was as a special educator for children with disabilities. And then, I was interested in certain kinds of problems that I saw around the institution of the special school, the admissions process for children with disabilities, the fundamental role of the family, and so on. I thought that it was necessary to think about some theoretical questions surrounding these issues. So that's how I became interested in a field that was just then emerging across the world called ‘disability studies’. And within that, there are multiple branches of study. One is literary and cultural disability studies where you have the domination of expression by people with disabilities. So it's people with disabilities telling their stories, writing their stories, performing their stories in different ways. And I think that's an important area because it informs us about living with different kinds of disabilities through the experience of people with disabilities.
Q. What exactly is Disability Pride Month, and why is it important?
I think Disability Pride Month means a lot of things. But it has a specific history in the passing of the ‘Americans with Disabilities Act’ on July 26, 1990. So just like Queer Pride Month, it's an American cultural thing to have a whole month dedicated to this celebration for people with disabilities. But I think in different parts of the world, this has different kinds of implications because the idea of celebrating one's disability is not convincing for everyone. The whole event got a positive response in India because we're also talking about access - access to different platforms. Let's say even this video recording that we are making, how would we make it accessible to people with varying types of sensorial disabilities, and so on. So I would see Disability Pride Month as a time when one can think about recognition for people with disabilities because they belong in all fields, but accessing things has always been very difficult. So it's a time for recognition and a time to demand dignity and respect. I think that would define disability pride.
Q. Social barriers pose a huge challenge to the disabled community. How do you think we should eliminate those barriers to increase their self-esteem?
I think that a lot of introspection is required on our part because social barriers occur when we treat disability as a ‘far-away’ issue that we are not connected to. The idea of ‘temporarily able-bodied’, which comes from the disability movement, caught my attention. It states that we are all temporarily able-bodied and that people can acquire disabilities, say because of an accident,etc,. We are all in a state of being temporarily able-bodied. Thinking this way will reduce social barriers. By social barriers, I am assuming that we are talking about people’s attitude towards disabilities. So in a case where there’s an interaction between a blind person and one who is sighted, you may find that the sighted person never looks at the face or the eyes of the blind person, which is a way of talking past or talking above the disabled person. I think that’s a major communication barrier. You will find that those of us who consider ourselves able-bodied don’t make eye contact with people using assistive devices like wheelchairs or crutches, which reduces social interaction. So thinking about able-bodiedness and disability as a continuum and not as two sides would be a way of removing social barriers .
Q. Based on your observation, how do you think society views someone with a mental disability as opposed to someone with a physical disability?
I think that disability itself is an umbrella category. It includes many impairment groups that we need to acknowledge . One large group would be people born with mental or intellectual disabilities which includes people with autism, learning disabilities and so on. Another group would be those who acquire psychosocial disabilities due to depression , anxiety and many such issues. All of this comes under this large group of mental disabilities. One of the issues faced by people with psychosocial disabilities and learning disabilities is that there is a certain kind of invisibility of their disability. Say in a classroom it would be easy to identify a blind student whereas a student with a mental disability would not be visually identifiable. The structure of our education system creates a kind of stigma, where a person with a psychosocial disability would not like to acknowledge it as we don’t create a space for it. So the problem is with the structure, to resolve this we need changes in the structure.
Q. There are certain situations where a disabled person refuses to accept help because of the belief that it’s not ‘normal’ to take help . How would you approach such a situation ?
I am not sure I can get into a hypothetical situation like this because when we frame it in this way we are also ‘othering’ the disabled community. When help is offered in a charitable manner, of course, it is not welcome. It feels like you’re doing someone a favour that they have to be grateful for. I think the better concept here is providing support, especially when it is provided institutionally. Let’s say you are organizing an event and in the invitation you say, if you have access needs please write to us and once people have written to you, you make sure that you conduct the event in an accessible manner. Now that is not stigmatizing unlike charitable help. Charity is usually done when the do-er wants to feel good about themselves, and that’s where the problem arises .
Q. You've been a lecturer since 2009 and have taught several students from different walks of life during your tenure. How would you suggest we go about sensitizing and training the student community to deal with this issue?
I think that what you're doing is an excellent initial step. Not just talking to somebody you consider as an expert but also talking to people with disabilities who are part of different walks of life would be a good way to move forward. There could be computer professionals who are people with disabilities, there could be sportspeople who are people with disabilities, and so on. Maybe enabling that kind of an exchange between people would be useful. I noticed that students organize a lot of TED Talks and different types of events. You have a lot of speakers with disabilities as well who belong to specific professional fields. So, getting them involved would be a way of sensitizing. I'm not comfortable with the word training because I don't think we need to train anyone on how to deal with a person with a disability. I think we need to think about how we feel as able-bodied people. What are the assumptions we make about everyday life? So I think it has to be introspection more than training.
Q. What type of resources or facilities are provided by the government for the disabled community, and how can these things be implemented in our campus?
This is a very important question. But I would say that the shift of government policy itself has moved from providing socio-economic benefits to thinking about civil political issues. So it's more to do with rights, justice, and anti-discrimination. The logic is that the minute you have an anti-discrimination policy in any space, it can be within an institute or at the level of the government, you will also make sure that access or support is incorporated into various events and professions. So I would say that we should not think of this as providing benefits where it becomes only socio-economic things but rather as civil political issues, like, what does it mean to have Disability Justice? It means that you make sure that access is part of every system. And to have that, you will have to reach out to people with disabilities, not the experts, because it is the people with disabilities, who can inform you about how something can be made accessible. One of the things that the UGC embraces is the idea of having an Office of Disability Services. I have served in the Office of Disability Services at my previous University. We consider all the access needs of faculty members, non-teaching staff, and students and make sure that we provide that kind of access support. So the access support, let's say for a blind student, can be in the form of a scribe during an exam. So we make sure that we have a group of volunteers, students who can provide that service. The UGC also gives an honorarium to service providers. Similarly, for blind faculty members, it would mean that we make sure that all the material is converted into a format that they can access. That would mean that the Office of Disability Services provides that software to the faculty member. Sign language interpretation is a very important thing when it comes to deaf students and faculty members, one would require a sign language interpreter in the classroom all the time or closed captioning. Thankfully, on Google and zoom, you can enable auto-closed captioning. But sometimes, you know, that goes berserk. It's not giving you the right words; it does not access all of our pronunciations correctly. So that means that you buy a certain kind of software that will do it, and then you clean it up. So an Office of Disability Services is an essential structure within an educational institution. And I think a lot of students who become part of this office also learn by engaging with each other. So it meets many goals.
Q. How is the current situation of stigma surrounding disabilities in India different from that of other countries that possibly give more importance to issues like self-identity and pride?
I wouldn't like to do a hierarchy of countries and say that this one is better because I think our social realities are very different. So the social realities of countries like the U.S. and Japan, where access is a significant part of everything that they do, are also determined by a certain economic reality. But let's also consider countries like India and Sri Lanka, and many other countries, where disability is also a result of climatic issues and environmental conditions. We have seen Bhopal, the chemical disaster that happened, and the fallout of it. So in places where you have groundwater pollution that leads to generations and generations of disabled children being born, our issues are somewhat complex. On that count, I don't mean to say that everything is hunky-dory in the US because you have many horror stories of eugenic mentality coming from the US as well, where you focus on creating the perfect human being. So the idea of the ideal human being that's genetically conditioned is also exclusionary for disabled people. So there are many things that we need to consider including the issue of conflict, where disabilities are acquired through conflict. We've seen what pellet guns can do. We've seen how blindness has resulted from the forceful use of pellet guns, and ordinary civilians have been injured in parts of this country alone. So the issue is complex, and therefore, I'm not entirely convinced that disability pride is the idea that everybody can equally embrace. It may be an ultimate goal that one moves towards, but I think dignity and respect are more significant than this need to identify as disabled and claim pride.
Q. The General Assembly of the United Nations set forth ‘The Declaration on the Rights of Disabled Persons’ and governments have specific laws about this as well. Do you think that the general public should be educated about these rights in order to eliminate any unfair advantage that non-disabled people may have and enable non-disabled people to help others in need as well ?
The UN CRPD is a significant document. It's also a very important moment in the history of disabled people and disabled activists. India was one of the first signatories of this convention. So that means that the laws that we have in India have to comply with the UN CRPD. In 2016, we passed the Rights of Persons with Disabilities Act, where the entire focus was on being compliant with the ideas enshrined in the UN CRPD. I wouldn't say that this law that we have right now is perfect because I know many disabled academics and disability advocates who have identified problems with that law. But I think it's an important step forward for all of us to be aware of the laws. Disability laws are not something that impact only disabled people who are a set and definite group. It's something that all of us need to keep in mind if we're seriously thinking of this idea of ‘temporarily able-bodied’. Yes, there are ways in which this awareness can be spread and I think that it's beginning to happen. When younger people get involved in activism and advocacy related to any concern, it automatically receives a certain kind of outreach. You'll find that a lot of social network pages are dedicated to disability pride, disability access, disability culture, and so on. I think that that's a meaningful way to move forward.
Q. Parents of children with special needs often struggle to deal with it .How should parents be educated about the needs of their disabled child, and how can the taboo surrounding the issue be removed?
When we think of this question in this manner, we're drawing this line between ‘we’ as the able-bodied people who have all the expertise and knowledge, and ‘they’ as the people who are struggling for information or knowledge. I think that this is where the problem lies. It's a concern of structures.When you have environments that are at least sensitive or attentive to questions of disability, you will automatically have a situation where nobody hesitates to access information. The kind of situation a lot of families face is that there is hesitation because of the stigma that is attached. There is also the belief that one should only think about things clinically or medically, but not socially. A family may access medical professionals more easily than they would actually access a self help group or a support group that consists of the families of disabled people. What I hear is that in the autism circles in India, there is a huge support network. You have parents of autistic children and adults across cities in such networks and these can act as spaces where information is shared and new knowledge is generated.
It is the family with the disabled family member or the disabled person themselves, who have to educate us, it's not the other way around. We can't educate them.
Q. Is there any advice for able-bodied people for when they come across a disabled person in terms of the actions or the words or phrases that we should use?
A disabled person is also a person, so there shouldn’t be any problem in communicating with them just as we would with a non-disabled person. I think that keeping the communication going is an important way of going forward. The problem arises because we make assumptions about what blindness is, what deafness is, what it means to be in a wheelchair, and so on. So, I think communication should just flow without one assuming that there are barriers. The training we have to do is for the able-bodied person themselves, to introspect about what able-bodiedness is, or what normalcy means, and not think about what disability is.
Q. Have you ever seen a situation of bias in the work environment against the disabled community?
Discrimination against people with disabilities is still part of a lot of structures. I think that one of the ways we can find out more about this is by talking to your seniors, those who have graduated and joined companies, because what I hear is that a lot of graduates are also coming across the whole issue of affirmative action and reasonable accommodation for disabled people when they go into multinational companies because multinational companies have to have these kinds of policies in place. You see how the corporate mindset has incorporated this idea in many ways but perhaps educational institutions still need to catch up with that. The kinds of discrimination are various, it will depend on individual impairments and the kind of rigorous work structures we create, let it be the work that we do as academics or the work that you do as students. I want to throw this question back at you and ask you what it felt like to sit online for those many hours during these past few semesters, it was exhaustive right? A lot of students were expressing themselves on social media platforms during this entire period, just talking about the various types of stress. Now I think that is ableism in operation when we put work demands in place that are not accessible for any of us, staring at a computer screen for hours and hours and hours trying to take in all the information that is given to you. When we have these kinds of work demands, we're also assuming that all of us are able-bodied and able-minded enough to do this. Our own cognitive abilities were challenged during the lockdown trying to concentrate in this manner.
Q. Do you believe that the current syllabus in schools educates people about issues like this? If not, what changes are needed?
I will have to look into textbooks and teaching practices. I know a lot of disabled researchers who are doing this kind of work. I think we have a lot of policies in India that necessitate that we have disabled children in schools. The Sarva Shiksha Abhiyan has a very specific kind of clause on this. So we will have to tap into the research findings of all of these researchers to know more about this, but as a knee jerk reaction, I can say, probably not. I don't think that there is enough disability content in any of our textbooks. Since I come from the background of literary and cultural studies, I can tell you one story that was maybe part of your high school syllabus, known as “The eyes have it” by Ruskin bond, where you have two blind people meeting and neither of them wants to reveal to the other that one is blind. So the only thing I noticed was that the CBSE textbook, in the comprehension questions after the story, had incorporated certain questions related to blindness. But I still didn't see the issue of social stigma rising there because if you read the story, it makes it very clear that the problem is that the blind hero in the story has been trained to think that he should not reveal his disability, because it will bring stigma. So I think that story is a very interesting way in which we can open up a discussion in classrooms about what disability stigma is. A lot of work is required in that area.
Q. There are a lot of national exams where we have separate quotas for people with disabilities. Do you think that is the right way to move forward ?
Affirmative action has been very important for disabled people. And what you're talking about is a part of this affirmative action, having a set of reserved seats for people with disabilities. We have to think about the history of discrimination one may have faced, where discrimination also includes running an exam in a format that is not automatically accessible. From what I heard, even the platforms that many of us were using to run exams during the lockdown did not enable the use of a screen reader, which can be used by different kinds of students. It doesn't have to be someone who is completely blind. It can be a student whose attention to that kind of textual information on the screen is not something that is very useful. So, I think that affirmative action is necessary and significant because it accounts for and provides justice for people who have been historically discriminated against.
Q. Do you have any final words or advice for our students?
I think all my words have been for all of us because let's not let faculty get away easily with anything. I think sensitization has to work all around. But I really want to thank the Rotaract Club for taking this up, it means a lot. One of the things it makes possible is that you become welcoming of students with disabilities, the minute you have a small program that you do on disability rights and justice, you make it very clear that nobody is excluded. So I think all appreciation is due to you and your team for thinking about this at a time when there's a lot of silence and hush-hush around disability. Congratulations on this step and I hope you'll keep it going in some way.
Comments