Inner Marginalities and Sub-Group Politicization within the Disability Movement
By Deepa Palaniappan
In the years following International Year of Disabled Persons (IYDP), the Indian State began its attempt to create an inclusion framework of disability based on policy intervention and reservation. The process culminated in two important landmarks for the Indian disability sector—Persons With Disabilities (PwD) Act, 1995 and the emergence of cross-disability alliance as an advocacy tool. After the PwD Act came into being, many disability NGOs began advocating for cross-disability advocacy. As a special education student at the School of Rehabilitation Sciences AADI (Action for Ability, Development and Inclusion) when their early intervention/therapy unit for children with developmental disorders was closed down in order to focus solely on advocacy, I became a witness to the transition from rehabilitation oriented practices to cross-disability advocacy of the disability movement. What started out as special school for children with cerebral palsy (Spastic Society of Northern India), was renamed as AADI in the 1990s, and emerged as a cross -disability organisation thereafter.
The cross-disability framework within disability mobilizations is somewhat similar to the empowerment that ‘Dalit’ as an umbrella category has enabled for scheduled caste communities in India. To denote people with various impairments under one umbrella terminology as ‘disabled’ or ‘people with disabilities’ is an advocacy tool that intends to bring with it a sense of unity and empowerment. Yet, with better implementation of reservation and other policy successes, it has become obvious that certain types of impairments are getting ignored or side-lined by the system. This is an uneasy truth, largely known but hardly spoken about. The present discussion is an attempt to politicize sub-group marginalization that has occurred within the larger contours of the disability movement as well as to unsettle the view that a cross-disability unified category is necessary for furthering disability politics. In order to acknowledge the emergence of disabled people as political subjects (as opposed to ‘victims of fate’) and to locate disability as a socio-political category (as opposed to a medical phenomenon), it is imperative to unpack the contemporary cross-disability framework from both State (administrative, legal) as well as Social Movement perspectives.
From a social movement perspective, the disability rights discourse appears to have adopted the ‘dalit paradigm’ of ‘all for one, one for all’ while conscientiously staying away from sub-group politicization. In some ways, the disability rights movement is akin to the tribal rights movement because the sub-groups continue to hold their culture and social practices even while identifying themselves with the larger category group. For those who understand disability rights itself from a socio-cultural model perspective, where we seek to recognize impairment as not bodily defined but socio-culturally, it would make more sense to create and delineate inner group cultural practices. To elaborate, each type of disability has several distinct cultural practices that are seen by society as ‘deviance’ or ‘problem’, for instance, what sign language is to deaf people and what the white cane is to blind people. Those who are part of the disability movement are aware of how using sign language or the white-cane is, in fact, a matter of pride and group-identity. Yet, for people outside the movement these are merely manifestations of ‘problems’ related to being born with impairment.
If we acknowledge the presence of such cultural practices, it would become conceivable to define sub-groups within the disability rights discourse as sub-categories that are culturally, politically, and socially distinct from each other except for being clubbed together by the Indian State for the purpose of distributing benefits.
Factors that set the disability discourse apart from all other identity and group politics: Many people with disabilities from remote parts of the country have no access to the process of obtaining disability certificates. The disability policy structure in India assumes a pre-defined disabled ‘group’, but there is no policy regulation as yet to get all deserving people to access this group membership. In fact, who gets to be classified as ‘legally disabled’ is one highly contested terrain in the Indian disability sector, and there are no parallels to this phenomenon in the politics of any other marginal category.
Another issue that is unique to the disability sector in India is the confusion related to percentage eligibility. A disability certificate with 40% and above disability is eligible for most State benefits. In many parts of India, disabled people undertake a convoluted bureaucratic process to obtain medical certificate for their impairment, in the hope of accessing State welfare schemes. While poor disabled people struggle with medical bureaucracy to ‘qualify’ for the required 40% criteria, people marked with 80% disability and above have problems accessing employment because there is a presumption that these candidates are ‘too disabled’ to be part of a work force.
To add to this complicated scenario is the fact that to be eligible for the Indira Gandhi National Disability Pension (IGNDP) a person has to be above 80% disabled (and below poverty line). If legally defined disability is above 40%, where is the logic in giving monthly allowance only to those with disability of 80% and above? What percentage is good enough? If one gets stamped with 80% or above, recruiters think one is too severely disabled and can’t do any work. If you get stamped with an average of 40% to 60%, you are good enough for jobs but you do not qualify for IGNDP. Certain disabilities, whatever the percentage, get excluded from this pension system and from the Orthopaedically Handicapped/Visually Handicapped/Hearing Handicapped (OH/VH/HH) reservation model of the Indian State. Examples of these are invisible disabilities, rare diseases, developmental disorders and multiple disabilities.
The percentage system is a poker game played by the Indian State with disabled people—you never know where you stand with the system till the moment of truth, when you try to actually use the certificate for benefits or reservation. Quantifying and grading a category from least eligible to most is unprecedented in the history of social movements in India. Even in instances such as OBC-A and OBC-B sub-classification, the list of communities belonging to each classification is clearly outlined. Hence disability politics cannot be clubbed with or compared to any other social movement driven policy either in terms of the reservation system or in terms of benefit allocation.
OH/VH/HH –Three pillars of inclusion: Another factor further complicating the puzzle is the fact that for all kinds of impairments, there are only three broad classifications of reservation available in Indian employment/education sectors – Orthopedically Handicapped/Visually Handicapped and Hearing Handicapped (OH/VH/HH). For HH and VH categories, internal marginality arises from the fact that both totally blind and totally deaf (sign language users) are not preferred by recruiters. A partially sighted/hearing candidate has more chance of getting in through the system.
But most complicated of all is the OH classification. There is an entire sub-set of people with cerebral palsy who are excluded from being categorised as ‘OH’ though they do have mobility limitations. Not many recruiters give preference to candidates with cerebral palsy, particularly those who use wheelchairs and with communication limitations. It does not matter how intelligent one is or if one is referred to as the ‘Stephen-Hawking-of-India’ or if they have completed a PhD in Computer Science (yes, a direct reference to our friend Akshansh Gupta), you continue to face rejection by all interviewers who tend to choose seemingly more functional (not necessarily capable) candidates. The injustice cited here is not only the result of clubbing many severely disabled people in the OH category; it is due to the fact that there is simply no way of convincing recruiters about the eligibility of such candidates. Thus the most severely disabled people increasingly get left out of the system and continue to remain marginalized. All employers seem to prefer the ‘least disabled’, ‘most-functional’ and ‘least grotesque’ while filling reservation quota. If a candidate is outside the margins of ‘acceptable deviance level’, he or she gets excluded before the interview stage.
Another sub-group that gets marginalized due to the nuances of the system is people with multiple disabilities. The ironic reality of a candidate with both visual impairment and orthopaedic impairment is that such a candidate is neither preferred as OH or as VI. They are seen as non-functional regardless of their proven ability. No vacancy is advertised specifically for people with multiple impairments. With the prevalent administrative culture which prefers people with as little disability as possible, the aim is merely to ‘fill up’ the quota and thus this group continues to remain marginalized.
Inner marginalisation within the disability movement: Further, beyond marginalities that are a product of State policy practices, there are those marginalities that arise due to the contemporary logic and orientation of the disability movement.
There are marginalized sub-groups with certain impairments, such as those with cerebral palsy, developmental disabilities or those who are deaf-blind to name a few, within the disability movement who are unable to come together and network. This may be due to the disability movement’s investment in moving away from individual disabilities and towards a cross-disability framework. And sometimes the absence of networking may be due to the very nature of these impairments, for instance, those who are deaf-blind. There are other groups that are unable to pool their resources because their impairments are not legally categorized as such, for instance, those with rare diseases, invisible disabilities, and neurological disorders. These groups also miss out on policy discussions. Conversely, the most empowered and dominant groups within the disability movement are those groups which are able to network easily. To a great extent no other sub-group of disability has come even close to replicating the strength and ability of blind people to network, consolidate and self-advocate. On the contrary, even with power to consolidate, deaf groups get side-lined from mainstream disability discourse except in events organised by well-funded NGOs and deaf organisations.
An example of such marginalisation within the mainstream disability movement is the side-lining of policy to support a scheme for State sponsored care-givers for people with multiple disabilities who need constant care. It is unfortunate that the strategy of ‘self-advocacy’ is vocalized and forwarded by the very groups that have emerged as powerful by virtue of the very strategy. It is to be noted that this political strategy itself is inaccessible! How is this a cross-disability alliance or movement then? The cross-disability framework seems to be a ‘use-and-throw’ concept which we ‘use’ till it benefits the top few layers, and ‘throw’ before it gets to the most marginalised and least included!
From the perspective of Gandhi’s criticism of Ambedkar—that to raise questions of marginalisation of backward communities would affect the larger goals of the freedom movement—would raising questions of inner marginalities create unwanted dissent within the community? Should we fear sub-group advocacy culture as being divisive? The debate is undoubtedly a sensitive one because any attempt to point out how certain groups are reaping all benefits of reservation might be misconstrued as an attempt to break the unity of our social movement.
From the perspective of Ambedkar’s response to Gandhi, however, we ought to accept dissent as a manifestation of inner contradictions that are meant to be resolved whether they create a rift or not. Marginalisation within a movement needs to be taken up and discussed even if that means putting aside the ‘collectivity’ ideology for a while and reverting back to particularities.
Deepa Palaniappan is a Political Science disability researcher with previous experience in special education.
For more stories, read Café Dissensus Everyday, the blog of Café Dissensus Magazine.
We may benefit a bit more from this article, if proactive strategies for inclusion are also provided. It is noted that in the mention of many diverse marginalized groups covered, this article has not mentioned persons with psychosocial disabilities, yet another hidden group. In our experience working cross disability for 10 years, we have learnt that, to be accepted, even welcomed, we need to keep trust and continue share what we go through; keep knocking on cross disability doors and explaining, sometimes at personal cost of re-traumatisation and personal hurts at being misunderstood or laughed at. The colonial baggage the sector carries results in infighting and divisive politics, and our mindfulness about the colonial hangover could result in more efforts at building communication, instead of waiting for someone to be nice to us and ask us. Some groups like the blind, the deaf and the mobility impaired, who have enjoyed patronage since the times of the Raj, continue to elicit sympathy and pity, emotions not conducive to promote dignity and respect; while groups like those with mental, multiple and psychosocial disabilities elicit fear and perplexity, in keeping with the colonial attitudes of segregation and seclusion, emotions which are also not conducive to inclusion. It is our collective responsibility, in the cross disability movement, and in the more group oriented movement, to keep bringing forth documentation, thoughts for analysis, experiential knowledge and a host of other information strategies, to make our advocacy both empathetic to cross disability sentiments and also to be more clear.
Thank you for this most comprehensive and articulate comment. I especially liked the lines where you have outlined the need to “keep knocking on cross disability doors and explaining, sometimes at personal cost of re-traumatisation and personal hurts at being misunderstood or laughed at”. Very true indeed.
As for proactive strategies- this argument posted above is a part of my ongoing research work in which I have tried to elaborate upon certain measures to counteract the current system. The above post is an attempt to outline a few structural imbalances of the existing state policy structure towards disability, within the given word limitation.
For those with psycho-social disabilities, the disability certificate itself is a double edged sword. Without the certificate they stand ineligible for even those meager benefits distributed by the State. Yet, on the other hand, the certification and labeling itself becomes a tool for discrimination. For instance, in Delhi metro, there is an open notice that states “Mentally ill persons are not allowed”. (http://www.thecitizen.in/index.php/NewsDetail/index/8/7819/Mentally-Ill-Persons-Not-Allowed-Says-Delhi-Metro). Same is the case with air travel too.
Also in terms of education and employment reservation benefits, those with psycho-social disabilities are not even covered under the OH/VH/HH reservation system, same as those with many other invisible impairments. In most scenarios, people with psycho-social disorders feel compelled to hide their certificate and impairment status in order to access employment benefits.
One further clarification is that people with cerebral palsy are in fact part of the OH classification but often are side-lined by recruiters who have the choice of recruiting anyone within the vast myriad of OH classification spectrum. The injustice faced by those with cerebral palsy is not in being denied OH certification but in being denied the privileges accrued to OH certification on account of the power of recruiters to choose those with fewer impairments as compared to someone with cerebral palsy and other neurological disorders.