4 Students with Disabilities: Education access and implications for cognitive justice

Cognitive justice is based on the understanding that there exists a plurality of knowledge and the right of these different forms of knowledge to coexist in dialogue outside any hegemonic framework of dependence. It was coined by the Indian scholar Shiv Visvanathan in 1997 to question the absolute dominance of modern science and to propose the search for alternative paradigms, particularly those derived from indigenous forms of knowledge (Makoelle, 2014). It is articulated around a paradigm that seeks to reconstruct the conceptual systems governing models of humanity and different ways of being, while acknowledging and respecting the knowledge system of each individual and each community.

In education, cognitive justice is concerned with the lack of knowledge about the backgrounds and cultures of individual learners, which constitutes an alienating process that deprives children of their rights and disadvantages them epistemologically (Odora Hoppers, 2015). It therefore advocates the availability of educational infrastructure and resources that can facilitate learners’ development individually and collectively so that they can be sufficiently equipped to meet both specific and general needs, in both local and global contexts. Without discrimination and exclusion, learning must be an emancipatory process in which local knowledge systems are recognized and integrated into the teaching and learning process in order to make the learning outcomes of the environment interact with external data.

In Haiti, the school system seems to be entirely oblivious, even in theory, to the notions of cognitive justice, inclusive education, school inclusion, equitable learning and critical pedagogy. In its modes of operation, it seems that this educational system does not much care that it tends to replicate the cultural and social injustices that plague Haitian society. Thus, double, triple or thousand-speed education, the commodification of education, the predominance of private interests, exorbitant school fees, unschooled children, over-aged students, an oppressed and minoritized mother tongue, inadequate school infrastructure and materials; all of these have become common terms to characterize the educational situation in Haiti. A high illiteracy rate reinforces the structures of social exclusion and an unequal society ultimately results.

If the Haitian education system discriminates against children without disabilities based on their social origins, what happens to children with disabilities? Given that social justice is not possible without cognitive justice and that access to quality education as a human right must be equitable, non-discriminatory, GIECLAT (Groupe d’Initiative pour l’Étude de la Cognition, du Langage, de l’Apprentissage et des Troubles) is carrying out a research project entitled “Students with Disabilities and Teachers’ Pedagogical Practices in Schools in Grand’Anse, Nippes and Sud d’Haiti”, three departments that were victims of the Hurricane Matthew disasters of 2016.

While GIECLAT advocates for inclusive education in Haiti, the information already collected reinforces its conviction about the crucial need for such an education. Its analysis should thus inform public policies on the issues where children with disabilities are victims of serious symbolic violence and stigmatization. Marco’s story reported in the following passage is enlightening on the state of this situation.

Marco and his mother Marie Lourde, the fighter

Marco^[1] was born in an urban setting on the southern peninsula of Haiti. He is 24 years old and lives with his mother, Marie Lourde, 52 years old. He has suffered from cerebral palsy since a few days after his birth. He is currently in grade 8 and is waiting for the necessary means to learn computer science, a profession that he appears to be able to practice despite his disability.

The details of the story

Marco was born without a disability. The firstborn in the family, he was loved by everyone. He was a happy child and the special pet of Carole, his aunt, Marie Lourde’s younger sister. But 22 days later, after a fever due to malaria, his limbs contracted, and serious motor and sensory problems appeared. The health center and the General Hospital of Les Cayes sent him to a center that specializes in cerebral palsy in Port-au-Prince. According to the diagnoses and recommendations of the doctors, Marco had to go to this center three times a week. Marie Lourde agreed to follow the medical recommendations by going back and forth three times a week between her home in the south and the center in Port-au-Prince, located in the west. After a month of round trips, Marie Lourde decided to stay with her god-sister in Port-au-Prince to avoid the long and frequent journeys by public transport between the southern and western departments.

Marco did not find a specialized center in the south. This is not surprising, considering that in 2001, for example, Haiti had about 2,500 doctors, 88% of whom practiced in the western department of the country, specifically in Port-au-Prince (Pierre et al., 2010). After two years of attending the center in Port-au-Prince, Marie Lourde decided to return home and continued caring for Marco herself until he could walk on his own. He still could not walk when he was six years old.

What support did Marie Lourdes receive? When a child has fallen ill, public morality dictates that parents and relatives should take care of the child and act to provide the care and support the child needs. In Marco’s case, however, although his father originally lived with his mother, Marie Lourde, once Marco became paralyzed his father abandoned the family. “He never helped me although he was my spouse and father of Marco. We never received any visits from him while he was in the hospital. When he was informed about the child’s disability, he said that there is no cocobé in his family of origin,” recalls Marie Lourde.

In the Haitian imagination, the term cocobé refers to people with disabilities or those who are stigmatized for one reason or another. They are considered cursed by God or an evil spirit, and often become subjects of shame for the family. As a result, they are ostracized, denied access to school and even church. They are hidden. They are ignored and despised. Their names are not mentioned. They are not counted. Sometimes they are completely abandoned by their families.

Once the child became impaired, Carole, his aunt who had adored him, moved away from her older sister. “My sister was one of the first people who left me alone with the sick child. She shut us out. She told me if she had a disabled child like Marco, she would have paid a doctor to give him a lethal injection,” continued Marie Lourde. A close neighbour told her that Marco should not live. According to this neighbour, Marie should not continue to feed him and must abandon him somewhere. She was told to throw him away. Because of these threatening attitudes, Marie Lourde decided to no longer leave the child alone: “tout kote m pase, m pase avè l” which means “wherever I go, I go with him”. In fact, she was afraid that her child would be killed with impunity, as is often the case for people with disabilities.

Social representations unfavorable to Marco

Despite Marco’s shabby treatment and rejection, Marie-Lourde did not let herself be discouraged. When she had to send her second son to school, she also took the opportunity to send Marco to school for the first time at the age of nine. As the headmistress of this school was already open-minded about children with disabilities, she promised to assist him as much as possible, as adapted teaching materials are very much in short supply. Marie-Lourde took advantage of this openness as a rare and excellent opportunity. In spite of the lack of understanding of others, she wanted her son to go to school, to learn a profession in order to become economically independent. Marie-Lourde organized to take Marco to school every day.

Marie-Lourde did not give up in the face of the contemptuous looks of those close to her, but she also has to confront the hurtful behavior and words of the children and adults she knows and the insults of those she meets along the way. The children heckle Marco: “gade w kokobe! Look at the handicapped person,” they often repeat when they see him. For the adults, they like to say, “Look how this lady has nothing better to do. How can a person keep this thing and agree to pay for his schooling! Actually, it’s not your fault, you wretch! The school that accepts this handicapped person is worse than you,” Marie-Lourde recounted.

In spite of the social representations unfavourable to the emancipation of people with disabilities, Marie-Lourde is proud to have done her best to give her child the necessary care and support. Marco has been able to regain some of his faculties such as being able to walk and talk. Thanks to the support of Marie’s second spouse, in 2002, he even went to Cuba to improve his condition. Another point of satisfaction for Marie-Lourde is the fact that her child, despite his disability, is able to attend school. Today, he is preparing to take the 9th-grade exams.

Marie-Lourde did not get this help without a hitch. The difficulties and frustrations were enormous and persistent. It has repeatedly been said that Marco’s situation is due to the actions of the devil. When he couldn’t walk, some people told the mother that the child was the victim of a krapo ak koulèv poud (magic powder composed with the substances of toad/amphibian and snake) and that she would have to see a vodou priest to solve the problem. This is an intense psychological pressure, especially since Marie-Lourde has another explanation which opposes her to her immediate environment. For her, it is the lack of access to quality medical care that needs to be questioned.

Elsewhere, medical treatments for the prevention of fetal abnormalities exist, but in Haiti, these methods are rare. The resources that are available, if any exist, are not accessible to the poor. « an Ayiti, ou konn ak tranche w al lopital, w ap soufri, mis lan ap griyen dan l sou ou. Li pa jan m mete pitosen nan sewòm nan pou provoke akouchman an. Men, lè yo kite timoun nan soufri nan pasaj konsa, il gen tout chans pou li fèt ak yon andikap ».

For Marie-Lourde, many cases of disability could be avoided in Haiti if a quality health system were accessible to everyone. Disability resulting from infection, prenatal illnesses, difficult delivery or congenital diseases occurring a few months after birth; all of these could be avoided. According to the Cerebral Palsy Foundation (Dauvergne, 2007), the condition stems from a cerebral impairment during the perinatal period.

The causes of this pathology are multiple and often result from a chain of events occurring before, during, or after birth. These events include complications of a neonatal stroke, infection or illness during pregnancy (such as rubella, toxoplasmosis or the side effects of certain drugs) or events during the first few months of the child’s life (such as meningitis, but also the consequences of trauma due to abuse). According to Dr. Lionel Carmant, one in ten children in Haiti suffers from cerebral palsy, compared to one in a hundred worldwide^[2].

Marie-Lourde’s view of the factors determining disability is consistent with the “social model of disability”. That is, while impairment is a physiological condition, disability is largely socially constructed through exclusionary policies and practices. For proponents of this model, once the attitudinal, architectural and socio-economic barriers are removed, most people with so-called disabilities will be included in the fabric of social, economic and political life (Oliver, 1996). Marie-Lourde’s way of explaining her child’s disability questions both the magico-religious model of disability and the “medical model of disability.” According to this model, which associates disability with impairment, healing and anomaly, disability is essentially physiological.

Following the pain she has experienced, Marie-Lourde defines herself as an activist fighting for the respect of the rights of people with disabilities, She notes that although the schools in the south today accept a child with a disability, the appropriate school infrastructure, teaching materials, and  qualified human resources are almost nonexistent. Support institutions are also scarce and lacking qualified staff, and they operate without any guarantee in terms of sources of funding. Therefore, schools remain the main setting which provides moral support to persons with disabilities. Their material and financial support is extremely limited.

Marco has been wanting to learn computers for over 5 years. I went to a vocational school with him for an evaluation of his computer skills. I was told that he can learn it. Unfortunately, I don’t have the means to afford this school’s tuition and to buy him a computer, and what’s worse is that there are no support structures in place to address the problem, complains Marie-Lourde.

With regard to the problem of appropriate materials mentioned by Marie-Lourde, the analysis of the questionnaires already administered in the framework of this research indicates that out of 92 teachers questioned about their working conditions, 59% consider that the “lack of appropriate accommodations and materials” is one of the challenges they have to face in the exercise of their profession. 50% think that it is more appropriate to speak of “lack of appropriate accommodations and materials” as the greatest contributor to the struggles of disabled children in schools, while 63% identify student adaptation as a difficulty to be overcome.

This table is indicative of a conception of schooling which sees students as those who need to adapt to school and not the other way around. This conception of the school is contrary to the foundation of inclusive education, which states that the school must adapt to the difficulties and special needs of each child. Useful pedagogy in this regard is a flexible pedagogy designed to make the child comfortable within the framework of equitable and natural learning. When 63% of teachers question the adaptation of pupils without questioning their own teaching practices, and when 50 to 59% consider that deficiencies in terms of appropriate accommodations and materials are a hindrance to the success of the class, it is easy to understand that we have an education system that is unfavourable and discriminatory towards children with disabilities. The various observations show that children and young people with disabilities do not receive the individual support they need and remain largely on the margins of mainstream schools (Felder, 2019). If the necessary measures are not taken, this situation of cognitive injustice will reproduce and maintain the mechanisms of social injustice to continue to exclude people with disabilities.

To sum up, the “participation” of persons with disabilities will be effective when the objective preconditions exist. There should be an equitable distribution of resources, where the priority is given to the special needs of children and young people with disabilities. Their voices must be heard. In addition, preconditions of intersubjectivity of cultural models of interpretation and evaluation deserve to be integrated into the educational system to strengthen both respect and social esteem. “It is not enough to allocate resources to children and young people with disabilities. It is necessary to examine and act on representations of society” (Felder, 2019: 5), because poor recognition means social subordination, i.e., an inability to participate as a peer in social life (Fraser, 2001).

Through this contribution, we hope that the country’s political and administrative decision-makers will recognize the merit of this research project and be attentive to the conclusions and recommendations that will result from it for the renewal of the education system and the application of cognitive justice through equitable learning. Equitable learning involves a process of reducing or even eliminating the learning gap between urban and rural learners, between the advantaged and disadvantaged, between ordinary learners and those with special needs in terms of educational resources. My hope is that schools in Haiti will no longer be a vector of social and economic exclusion.

References

Dauvergne, F.^[3] et al., (2007), “Handicaps, recours aux soins et conditions de vie des Adultes atteints de paralysie cérébrale infantile en Bretagne (APIB) : premiers résultats”, Annales de réadaptation et de médecine physique, volume 50, pp. 20-27.

Felder, Franziska, (2019), “Recognition in Special Needs Education, Inclusive Education and Disability Studies”, pp. 1-8, L. Siep et al, Handbuch Anerkennung, Springer Reference Geisteswissenschaften, Springer VS, Wiesbaden.

Fraser, Nancy, (2001), “Recognition without ethics?”, Theory, Culture & Society, volume 18, no. 2-3, pp. 21-42.

Makoelle, Tsediso Michael, (2014), “Cognitive justice: a road map for equitable inclusive learning environments”, International Journal of Education and Research, volume 2, no. 7, pp. 505-518.

Odora Hoppers, Catherine A., (2015), “Think piece: cognitive justice and integration without duress the future of development education – perspectives from the South”, International Journal of Development Education and Global Learning, volume 7, no. 2, pp. 89-106.

Oliver, Michael, (1996), Understanding disability: From theory to practice, Macmillan: Basingstoke.

Pierre, Andrena et al., (2010), “Culture et santé mentale en Haïti : une revue de littérature”, Santé mentale au Québec, volume 35, no. 1, pp. 13–47.