RESISTANCE OR BATTLE
Independent, Proud and Special
Elena Pečarič
The marginalized are not marginalized just because they are shoved aside and forced to live somewhere at the margines of society, on the edge of social goings-on. On the contrary, the marginalized are always already an important part of social life, or rather an indispensable and constitutive part of it.
They are the part of society, its gray areas, around which social activities producing “normality” and standardization can be established. In contemporary multi-media environment we can no longer speak of an edge or a perifery. In the age of globalisation, interactivity and multiculturality and in the name of economic progress – i.e. in favour of capital and multinational corporations – all the borders and taboos are being done away with.
In such a world the margine is loosing its original meaning, its connotation in the territorial sense, but preserves it as the disability to access or exclusion from the centres of power and decision-making. Because of that the marginalized are not treated or seen as subjects that have something to say or are worth listening to, but are rather mere objects for legimating the current power relations. And the ones in power asign themselves the right, duty and task to continue solving the “urgent problems” of inequalty, in their own manner, naturally.
The marginalized are, therefore, excluded from social goings-on as achitects of their fortune and as shapers of knowledge which are put into effect via institutions, politics and the ideology of everyday life. They are excluded from any dialogue, denied the opportunity to debate, criticise and create and, in the first place, never interpellated to express their opinion or volition, even when their lives and fortune is the issue. On the other hand, they are included as the indispensable and irreplaceable passive objects around which the power of the fitter is established and on which it leans.
As the head of Independant Living of the Disabled project I am in the position of observing it from two aspects, namely as its users and from the perspective of expertise and its managing. The two are in fact not condtraditory as one might expect, but rather supplement and support each other. The original idea and vision was actually begotten in the spirit of exchange and interwinding of theory and praxis, which consequently gave rise to the project itself which could not subsist were it not a token of firm self-determination, persistency and resolution. At work I have problems explaining users in need wanting to join the project that having done it they would be expected to contract certain obligations and responsabilities. That this is not a service where you get whatever you want, but one offering assistence to carrying out your wishes. The project does provide physical help in the form of personal assistence, but at the same time a high degree agility and reliability is expected on the part of the individual. In a sense it can be paraphrased as »help thyself and YHD (God), will help thee« .
The project provides personal assisence for everyday activities, which the disabled individuals cannot perform by themselves and gives them in this manner th epossibility of choice and independence.- the independence which presents itself primarily as a state of mind and is the prerequisite for the indiviual to establish, realize and preserve it as such. It is, in fact, a way of thinking, reflecting, that is to say, oneself and others, a thinking that has to be decisive, autonomous and clear.
But a huge majority of the disabled is not equiped with the above mentioned or is not in the know with the conception of being independant, what are the consequences, implications (advantages, draw-backs, one's rights and responsabilities), one's duties and what to do with one's independance in the first place. Most of the disabled are used to or have been tought and drilled into the role of the passive recepients of care, without responsabilities, duties, obligations and guilt. They got used to beinginvalidand most of them act the part well, scrupulously and to the end, unaware of the fact that they have become the victims of their own convictions.
Some find this role well fitting, safe and cosy the others turn it against the humanitarian simpletons who become an object of their derision.
But the majority is utterly entangled and entrapped into this role. One almost pities them and is not sure whether trying to open their eyes would be a favour or plunging them into even greater despair.
The key moments of the ideology that permanently keeps the disabled on the margine is the hope for rehabilitation, normalization and integration. Not only the diabled, the society also shares this belief. In this sense the disabled are being merely handled, changed, improved and normalized – the process which is inevitably inefficient. In such a situation, one side is always kept busy, whereas the other, the disabled, is constantly trying to catch the last train to integration where they would live in harmony with the others. As the later does not exist, this never happens
Independecy is in a sense a very misleading and quite a banal term when one bears in mind the fact that in everyday life everybody is in one sense or another always dependent on somebody. But for our purposes we shall try to define it as:
-knowing what you want and an ability to express individual needs
-being self-confident and able to detect and evaluate proper limitations
-controling one's life (being fit for managing things, making decisions and accepting responsabilities)
Although the disabled are underprivileged in many a sense, we firmly mantain that this very experience can be used in the struggle for equal opportunities and winning equality of rights. As unusual and paradoxical as it may seem, the underprivileged are actually privileged as potential champions of emancipation and independency since the solcial relations into which they are interwoven direct, challenge and force them into a rebelion and an attempt to change the present situation. The deprivileged as such in relation to acepted standards, behaviour, social roles and acceptable social praxis are in position to observe, experience and suffer the ideological knacks, the ruling or predominating discourse, the structure of authoritative relations and the microphisics of the government in which we play the lead supporting role. Marginals are deprivileged just as privileged potentional carriers of fight for emancipation and independency are, because social relations in which they’re enclosed and frames in which they’re put in, directly lead, provocate and push them to resist and to change their existing state
Exactly this “position of deprivilege” towards admitted and accepted social practices, socially conformed and allowed norms, behaviours and roles; and in relationship with the capability to choose or to create a possibility allows them and us to notice by ourselves “experiences out of practice” and to feel ideologicalgripsleading or dominating the discourse and structure of authority. Relations and microphysics in which we’re playing essential, main roles (or we’re pushed to play it). Role of a victim, a patient, a sick person, a pervert or a perpetrator.... etiquettes that describe or attributestigmatised persons and at the same time define therapy or distribute recepies. Too few disabled people are aware that their personal and individual life is incorporated in larger structures which determine them as well as other individuals. The structures are not for ever and unchangeable, but a reflection of certain values, knowlege, interests and politics. And vice versa: the political is always and the personal. For this reason it is irrational to hide from the inevitable. But there is a crucial difference between passively yieldind to those influences and active moulding of politics and consequently one's life.
The point is not in doing away with the deficiency and striding along others towards the horizon above which there is a sign »healthy living, long dying«,
but to enlarge the deficiency, deepen the gap and sharpen the differences and turn them against their begetters who thought that they would change, isolate, get rid of or convert us.
Underprivilege has to be examined closely. Namely, if and when we are aware of the situation, we also realize that changing the situation needs cognizance. The latter is attained with the help of theory, relarions analysis, reflection and self-reflection. Through this process knowlege is produced. This is the most powerful weapon and a tool to live with one's disability. In this way we have gone full circle and ascerted that the privilege of the underprivileged we have been serching for is the very opportuniti, more, a demand for producing the knowlege arising from the state of affairs itself. Whoever thinks (and they are many), that knowlege »cannot change anything anyway« is wrong and does not know (because he has no knowlege) how very.
Knowlege is just a by-product of cognition process. Ignoring the later and closing one's eyes to anything that might lead to it suggests that the privilege of producing cognition is irrelevant to them. And are intention is not to try to instill the opposite into their heads. The privilege is a privilege just as long and because not everybody has acces to it. Only a few have it.
The specialists and the pastoral leaning on (reductionist) medical science and psychologisms in their sermons. Praising and and promising the future in the interest of the present without noticing how the are degrading and making a fool of themselves. They are slobbering with mouthful of sweet words and good intents which, with ruthless affability and intrusive persuasion, they try to shove up the ass, if there is no other way.
And speaking of pride, it is not our intent to celebrate just any kind of superiority along a single identity line such as »black power« and »gay pride«, it would be foolish. Pride is not something that needs proclamation, in the least as a group quality. It is a by-product of a relation to oneself and others, a mode of confrontation, understanding and solving problems. It is a feeling emerging when we manage to defy the hardest – our own fears and taboos –(ourselves). When we stop pretending that we are like the others, when we are no longer interested in being likeable, in accordance with someone's standards, followers of a cause and when we no longer delude ourselves about the value and the meaning of our lives.
Only then we get rid of all the rubbish, all the burdens bowing our heads and curving our shoulders while we graze like a herd of sheep in hyper-, mega, maxi-, inter-, super- lawn, called a department store. Where the fold's job is done by the boards offering discounts and special offers. Where we graze merrily and wallow to debility in the inexorability of trade fetishism. And we still want more, some more. Pride has much to do with dignity.
We need solidarity in order to build power in minority groups.
Presented on seminar:
Participation Opportunities: Perspectives for Inclusion of marginalized Groups
(5th – 9th November 2003, Ljubljana, Slovenia)