I am currently binge-watching Law & Order: SVU. In one episode, “Competence,” the rape survivor has Downs Syndrome (DS). Her mother, who is also her legal guardian, feels DS limits her ability to function “normally” in the world. The main concern of the mother is her daughter’s ability to care for the baby she is carrying as a result of the repeated rapes. The mother’s protection of her daughter extended only as far as she could be with her. Throughout the show, the revelation is that the store owner, where the daughter worked part-time as a stocker, exploited her disadvantage for his advantage. To limit the risk of the baby having DS and added to her belief in her daughter’s inability to care for the baby, the mother arranged an abortion of her daughter’s behalf. The courts stepped in and conducted a competency trial. Placed on the stand, the pregnant rape survivor acknowledged that once she did set fire to the kitchen but that she could now make soup because her boyfriend showed her. She also explained that even though she did not know how to care for a baby yet, she could learn if someone taught her.
As persons with disabilities (PWDs) move from the medical model into the social model in pursuit of independence, often overlooked are the role and needs of the caregiver. Society must begin to acknowledge and identify the paradigm shift occurring across the board. The purpose of this blog is to reflect on the role of parents and caretakers (also referred to as guardians) who attempt to bridge the gap between the medical and social models of disability while encouraging self-determination and protecting their loved ones in a created world that does not have them in mind.
The societal solution to PWDs was eugenics, institutionalization, or isolation–out of sight and out of mind for centuries. The employment of this solution allowed and continues to allow some guardians to abuse the system and take advantage of those in their care, and the pursuit of swift legal action is necessary. However, as societies move towards inclusivity, we must give encouragement and praise to those who through their actions look for avenues and solutions that empower. More specifically, we must continue to champion the guardians. With the implementation of the CRPD, standards of ADA, more universal design efforts, and competency hearings, PWDs are becoming productive members within their communities. So, what does this mean for their guardians who have sacrificed to protect their family member from the cruelty of an able-bodied world and the able-bodied world not used to making allowances for Others, particularly PWDs?
Who is a guardian? Persons with intellectual disabilities often have a legal guardian. The legal guardian acts in the “best interest” of their ward or the person in their charge. Much of the present debate regarding guardianship is the abuse of power in the denial of civil and human rights. In a 2007 study, Dorothy Squatrito Millar found that study participants did not recognize the disconnection between self-determination and guardianship or realize that there are several available alternatives to guardianship. Despite the arrival at the age of majority (18), students with intellectual disabilities did not receive the opportunity to self-advocate; rather, in many instances, they are given directions on what to do, or their guardian did the task for them. The inability to self-advocate as an adult is a denial of personhood, a violation of dignity. “We are adults. They need to accept that” and “they need to put themselves in our shoes sometimes” were some of the responses of the students.
What is notable about the SVU competency hearing is the assumption that all adults know how to care for a baby or balance a checkbook. The implication is that a person with an intellectual disability needs to have a guardian to avoid making any mistakes. As one non-disabled parent in Millar’s study put it, “We all make mistakes, and we all need help sometime—but that doesn’t mean we need guardians.” Most guardians resist the transition to adulthood and self-determination out of fear of exploitation, lack of information, and concern for their disabled child’s well-being. Millar concludes that while there is a significant need for more research on the transition to adulthood, the inclusion of children with intellectual disabilities into decision making throughout their lives does assist in the collaboration between other institutions in providing care that aligns with goals, imparts knowledge, addresses concerns, and maintains dignity and personhood.
Many years ago, or so the story goes, a young, Kurdish man named Mem fell deeply in love with the Emir’s sister – a beautiful, young woman named Zin. This Emir, however, had in his service an ambitious young minister named Beko who coveted the affections of Zin for himself and, thus, set about conspiring to undermine his competition. Ultimately, his machinations proved to be successful, creating a tragic series of events that concluded in a similar vein to that of two far more famous, star-crossed lovers. Mem perished alone in the darkest corner of the Emir’s dungeon, and upon discovering this, Zin followed her lover into the afterlife.
At the funeral, the two lovers were buried side-by-side, but the grave was not yet full. Entranced by the beauty of Zin even in death, Beko leaned over her grave to stare, enraging the Emir:
The mausoleum of the two lovers still stands today in the city of Cizre, the point at which the borders of Turkey, Iraq, and Syria meet. Yet this story possesses a significance far greater than simple literary achievement. It is the recurring tale of the Kurdish people and their struggle for self-determination.
In this explicitly nationalist story, Mem is a metaphor for the Kurds, while Zin represents the Kurdish homeland. As much as they long for each other, however, there is always a Beko, a meddling outsider, a Turk, a Persian, an Arab who seeks to divide them. The empires of these outsiders may fall, but each plants, in its death throes, the seeds for a new thornbush that will once again deny Kurds self-determination. Ultimately, the modern states of Iran, Iraq, Syria, and Turkey are merely the latest iteration of this thornbush.
Turkey and Iraq threaten Kurds over their independence referendum
Ultimately, this leads to the question of who to believe. Are the Kurds simply backwards, uneducated mountain people? Or do the Kurds constitute a distinct people who have been unfairly portrayed by their opponents?
There are three criteria by which one can evaluate this claim: (1) mutual intelligibility, or the ability of two people speaking two different languages to understand each other; (2) uniqueness in terms of letters, sounds, and words; and (3) recognition.
Following the First World War, the suffering experienced by the Kurds began in earnest. They were promised independence in President Woodrow Wilson’s Fourteen Points, the Covenant of the League of Nations, and the Treaty of Sèvres. Ultimately, these promises came to naught as the Turks under Atatürk forced the allies to invalidate the treaty, which was replaced by the treaties of Lausanne and Ankara. These two treaties split the Kurdish populated regions among the newly created nations of Iraq, Syria, and Turkey, effectively ending Kurdish hopes for a negotiated independence at this point in history.
Ultimately, this rampant discrimination pushed many Sunnis into the waiting arms of the Islamic States; however , the Kurds resisted such radicalization. Instead, they fought alongside the United States, as well the Iraqi central government that oppressed them, against the Islamic State. By all accounts, the Kurds suffered from the brunt of the fighting, retaking large portions of Iraq and capturing the Islamic State’s capital of Raqqa in Syria.
It is in response to the previously mentioned discrimination, as well as their role in defeating the Islamic State, that Kurds decided that they are finally ready for an independent state of their own. The question now becomes, do they deserve it? The answer is an unequivocal yes for the following reasons:
1) The Kurds meet all of the criteria for nationhood and self-determination, including possessing their own distinct language and a common history.
2) The Kurds have been promised – through a variety of international agreements – independence for over a century. These promises should be honored in order to provide legitimacy to other international agreements on human rights, which also rely on their participants living up to their commitments.
Throughout their history, the Kurds suffered greatly, but with uncommon resilience and strength, on behalf of their ethnicity. With each passing decade, however, it seems to grow worse. For that reason, it is high time that the world intervene on their behalf. This should be done not only to stop impending bloodshed in the aftermath of the fall of Kirkuk to Iraqi forces, but in order to assist the Kurds in permanently removing the thornbush that stands between them and their beloved, and long overdue, homeland of Kurdistan.
After an enormous earthquake destroys the city of Lisbon in Candide, Voltaire poignantly asks the reader, “If this is the best of possible worlds, what then are the others” (Voltaire, 26)? Increasingly, the most potent of political earthquakes – nationalism – is enjoying a powerful rebirth following a long and tortuous decline in the aftermath of World War II. People across the globe are beginning to envision a different world, a better world – one in which they possess a nation of their own. Whether this rebirth will result in bloodshed on a scale not seen since the 1930s or in a peaceful resolution of differences is yet to be seen, but in all likelihood it will be determined on the opposite side of the Iberian Peninsula – in Catalonia.
Since at least the 1920s, the issue of self-determination – which can be defined as the ability of a distinct people to establish a nation of their own and exercise unimpeded sovereignty in their own affairs – began to be adopted into the lexicon of human rights. Woodrow Wilson was one of the first to interject self-determination into human rights, claiming that “nationalities … should be assured an undoubted security of life and an absolutely unmolested opportunity of autonomous development” in his Fourteen Points. Ultimately, this belief influenced nearly every major, Western-produced document concerning human rights. Self-determination is explicitly guaranteed to all peoples in the Atlantic Charter, the Declaration by the United Nations, the United Nations Charter, the International Covenant on Civil and Political Rights, and the Universal Declaration of Human Rights among others.
Curiously, however, the European Convention on Human Rights – which is the most relevant document in this situation due to Spanish membership in the European Union – does not guarantee self-determination. In fact, it states that freedom of expression may be limited “in the interests of national security, territorial integrity or public safety, for the prevention of disorder or crime, … or for maintaining the authority … of the judiciary” (ECHR, 11). As will be demonstrated later, the Spanish government has employed all of these arguments in its bids to stop the Catalonian independence referendum from coming to fruition.
Aside from the European Convention on Human Rights, the connection between human rights and self-determination – at least until recently – has not been prominently disputed. The question then becomes, how do we determine to which groups the right of self-determination applies? The general consensus is that this right is primarily granted to peoples demonstrating the characteristics of a nation. However, the question of who constitutes a nation, and on what basis, generates considerable disagreement, particularly in the West, which has long attempted to suppress its own nationalism as penance for the destruction wreaked by Nazi Germany.
Some claim that the nation is a figment of the imagination, that it is an invented national tradition, that it is an imagined community (Hobsbawm and Ranger; Anderson). This is not to say that it does not possess meaning – history clearly demonstrates that it does – but that there is very little actual quantitative or qualitative basis on which a nation can be delineated. Others suggest that the nation is real, but that its membership is constantly in flux, shaped solely by economic considerations, individual choices, and shared beliefs (Deutsch; Gellner; Kohn). This “civic nationalism” generally possesses a more cosmopolitan outlook, and it often taken to the extreme by intellectuals, such as Ernest Renan, who claimed that “a nation’s existence is … [simply] a daily plebiscite,” (10) a daily referendum.
Yet others still define a nation as something timeless and primordial (Geertz; Isaacs; Smith). To these theorists, physical characteristics, shared culture, shared history, and shared language – to put it simply – combine to create “a self-aware ethnic group,” which forms a nation (Connor, 279-88; Schmitt). In modern academia, this conception of the nation is generally regarded with scorn as an outdated, primitive view. Among many people, however, it still holds tremendous sway as demonstrated vividly by the universal opposition to immigration by nationalist, as well as by the decline in social trust in multi-ethnic areas of the United States (Putnam). While there exists some genetic overlap between different ethnic groups in border regions, generally speaking, ethnic groups, and the nations they constitute, remain homogenous and distinct from one another. And even if they did not, as Walker Connor notes, “what ultimately matters is not what is but what people believe is” (Connor, 379-88).
In determining if Catalonia possesses the right to independence and self-determination, one must first decide whether or not Catalonia constitutes a nation. As evidenced by the slogan above – which means “We are a nation, we decide” – Catalans clearly believe that they do. And all evidence unequivocally indicates that they are correct.
Indeed, Catalonia has previously experienced independence, existing as an independent kingdom until the fifteenth century when it was divided between the Spanish and French monarchies. Despite this conquest, Catalan culture – and a sense of “Catalan-ness” – survived and even thrived (Sahlins). The people of the region possessed a common language (Catalan), culture, symbols, and history that both united them and kept them distinct from their neighbors and conquerors. However, this distinctiveness was not preserved without a struggle. Various Spanish monarchs, as well as the dictator Francisco Franco from 1936 to 1975, sought to hispanicize the Catalans by banning their language and symbols. Attempts to resist were brutally and bloodily repressed, yet Catalonia’s distinctiveness survived into the current century.
After the death of Franco, the new Spanish Constitution granted Catalonia a limited form of autonomous self-government, and for several decades this largely satisfied the Catalans. Between 2009 and 2011, with the repression of Franco but a distant memory, this rapidly changed as various Catalan towns voted in symbolic independence referendums. In 2014, the first non-binding, Catalonia-wide referendum was held with a result of 81% in favor of independence.
Ultimately, this brings us to the Catalan independent referendum of 2017, which – due to the intransigence of both parties – threatens to engulf the Iberian Peninsula in its second civil war in under one hundred years. There were crucial differences between this referendum and those that preceded it. Unlike the previous referendum, the results of the 2017 referendum were binding. Furthermore, it was administered by a new Catalan leader, Carlos Puigdemont, who refused to swear the customary oaths of allegiance to the Spanish Constitution and monarch, King Felipe VI.
To many Spaniards, the referendum was an illegal act and those who participated were criminals. Following the announcement of the results, millions of Spaniards took to the streets, shouting slogans – as in the video above – such as “I am Spanish,” “No negotiations with traitors,” and “Puigdemont to prison.” It is abundantly clear that the Spanish government under Prime Minister Mariano Rajoy took a similar hardline view of the Catalan independence referendum.
Although the Spanish government was correct in its stance that the referendum was illegal, and it rightly questioned the legitimacy of the vote, it grossly violated the human rights of its Catalan citizens as established in nearly every human rights document. As previously noted, however, it did not violate the European Convention on Human Rights, leading – along with no doubt more cynical reasons – the European Union to support Spain’s actions.
Los independentistas catalanes han fracturado la unidad española
Addressing the Spanish nation in response to the Catalan independence referendum, King Felipe VI claimed that the separatists had fractured the unity of Spain, as well as Catalonia itself, and were undermining democracy. In an interview with El Pais, Spanish Prime Minister Mariano Rajoy admitted that Catalans constituted their own nation, but denied their right to secede. Rajoy professed the belief that Catalans should abandon extremism, and work to coexist with the rest of Spain in a peaceful and mutually beneficial manner.
Are the Spanish monarch and prime minister correct? Or do the Catalan people possess the right to secede?
Ultimately, the Catalan pursuit of a pointless independence, possessing little to no basis in human rights or even common sense, could see a return to the bloodshed that characterized the apex of nationalism – the 1930s. Already the signs can be observed. The referendum is serving to polarize both sides of the issue, heightening Spanish nationalism, and encouraging violence. Increasingly, many disillusioned Spaniards – in a last bid attempt to maintain their country’s longstanding territorial unity – will look for example to the last Spanish leader who was able to control the separatist tendencies of Catalonia: Francisco Franco. And if that occurs, Catalonia will certainly have created a different world, but will it be a better world for Catalans?
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