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06 December 2021 | Story Maduvha Malivhoho | Photo Supplied
Maduvha Malivhoho is an Editor at the Accessible Study Material Production team for the University of the Free State (UFS) Centre for Universal Access and Disability Support (CUADS).

"Disability describes the social exclusion and barriers imposed on people with disabilities and impairments evoke an unpleasant feeling in us, and it is the feeling which motivates how we react when we face disability and people with disabilities." – Brian Watermeyer 

South Africa commemorates National Disability Rights Month, known as DRAM, annually between 3 November and 3 December. International Day of Persons with Disabilities, also known as National Disability Rights Awareness Day, is celebrated on 3 December. The theme for 2021 is ‘The Year of Charlotte Manye Maxeke – Create and Realise an Inclusive Society Upholding Rights of Persons with Disabilities’. 

Disability is a quintessential post-modern concept, because it is complex, variable, contingent, and situated. One is always disabled concerning the context in which you are put, subject to many definitions from different perspectives, and is used for various disciplines ranging from medicine, sociology, and political science. To fully comprehend disability, one needs to consider multiple perception models in the quest for a better understanding of disability; so-called ‘models of disability’ emerge in disability research. In line with most notions of disability, it could be associated with the medical model, social model, human rights model, and biopsychosocial model. Disability models aim to demonstrate how society perceives, understands, and addresses the needs of people with disabilities. 

The Disability Models 

Medical model: views disability as a personal tragedy in need of cure and rehabilitation.  

Social model: views disability as predominantly a socially driven issue; allows us to reconstruct social inequality for people with disabilities as a collective experience of discrimination and injustice, rather than a personal tragedy affecting only individuals. However, the model does not address the emotional aspects of disability and the realities of impairment.

Biopsychosocial model: views disability as a combination of an individual's state of health and their surrounding environment, that is, society. By recognising disability as a social construct of intricate variables and interaction of biological factors (genetic, biochemical, etc.) and psychological factors (mood, personality, behaviour, etc.), the social aspects (cultural, familial, socio-economic, and medical, etc.) is to recognise the complexity; specifically, the intersectionality that informs disability is recognised.

The human rights model: assumes that societal barriers can only be removed by guaranteeing rights to people with disabilities. Human rights principles recognise that fundamental rights are inherent in all human beings, regardless of race, gender, ability, and nationality. Therefore, disability rights are viewed as a human right under this paradigm, advocating for equal participation and opportunities for individuals with impairments. 

Promoting the human rights of people with disabilities, the White Paper on the Rights of Persons with Disabilities in South Africa mandates a universal design approach, which is defined as "the design of products, environments, programs, and services to be usable by all persons to the greatest extent possible without the need for adaptation or specialized design."

As per the Global Education Monitoring report on inclusion and education, the Universal Design for Learning (UDL) framework is particularly relevant for a comprehensive understanding of inclusive education as tackling barriers to learning, noting that "the Universal Design for Learning concept encompasses approaches to enhance accessibility and eliminate barriers to learning." Such an approach can help to integrate UDL into the educational system by addressing the various social, emotional, and learning requirements of different groups while working for the universal system-related goal.

South Africa is among the few countries in the world to have signed and ratified the most acclaimed global convention on disability in 2007. The international trend endorsed by the United Nations Convention on the Rights of Persons with Disabilities (UNCRPD) seeks to promote, protect, and ensure the full and equal enjoyment of all human rights by persons with disabilities. Although disability is varyingly defined, and definitions change across time and space, the UNCRPD defines persons with disabilities to include long-term physical, mental, intellectual, or sensory impairments, which in interaction with various barriers may hinder their full and effective participation in society on an equal basis. For this reason, creating and realising an inclusive upholding of the rights of persons with disabilities is critical in building an enabling environment for all. However, despite progressive legislative structures in South Africa, persons with disabilities continue to face barriers that prevent equal access to opportunities and participating fully in all aspects of life. It is primarily due to inaccessible infrastructure, prejudice, stigmatisation, discrimination, and attitudinal behaviour towards persons with disabilities, which often result from a lack of understanding.  

According to Stats SA, 80% of persons with disabilities aged 20-24 are not attending tertiary education, yet the population of students with disabilities at tertiary institutions is just 1%. It is also revealed that there is a strong demographic gap between races. Access to education is necessary for advancing sustainable development, but it is evident that inclusivity within tertiary education remains out of reach for many.  The University of the Free State aims to foster disability inclusion within the Integrated Transformation Plan, which is in line with the universal access approach guided by the Centre for Universal Access and Disability Support (CUADS). 

CUADS, a well-known disability unit, was established in line with non-discrimination legislative changes and inclusive policy frameworks for access and equal participation for students with disabilities. It serves as a bridge between students with disabilities and the institution, ensuring mutual understanding. The majority of such departments are led and managed by women, as women have a dynamic role in enhancing and nurturing the aspirations of children and youth with disabilities to get access to education. Despite the positive role of these departments in the full inclusion of students with disabilities, attitudinal barriers remain a challenge to their non-disabled counterparts. 

Furthermore, female students with disabilities face particularly higher levels of marginalisation and disadvantage because of the double discrimination based on their disability and gender. Their status as women renders them vulnerable to gender-based violence (GBV), including sexual abuse, maltreatment, exploitation, and intimate partner violence (IPV) compared to men with disabilities. 

South Africa has a high prevalence of GBV, especially IPV. Women with disabilities are more at risk and experience an additional layer of violence compared to women without disabilities and men with and without disabilities. It is also revealed that blind women and women with severe intellectual and mental disabilities are equally perceived as highly exposed to GBV compared to women with other disabilities (e.g., if an intellectually challenged individual could not give informed consent and/or when they report it, it will be difficult for them to identify the perpetrator). 

Furthermore, men with disabilities are at greater risk of GBV, but not comparable to women and girls with disabilities. The gap perpetuates unequal gender relations in all contexts of South Africans’ lives. While various organisations seek to promote women's rights in GBV advocacy, there is relatively little emphasis on GBV against persons with disabilities, including violence against women and children. 

To build an inclusive society, one needs to understand intersectionality concepts that provide a prism to comprehend marginalisation and exclusion better. Understanding intersectionality is related to how various identities such as race, gender, class, disability, sexuality, and others intersect – how lived identities are seen as entwined with oppressive systems that are mutually constitutive and reinforcing. Intersectionality as an approach recognises how complex reality is and how this complexity informs social conditions and behaviour; it acknowledges that people's lives are defined by multiple layered identities that derive from social relations, histories, cultures, and other operations of power structures. 
It is an analytical tool for exploring, comprehending, and responding to how gender intersects with different identities and how these intersections lead to distinctive oppression and privilege experiences. Also, intersectionality addresses how social structural norms such as racism, patriarchy, classism, and other social systems of discrimination function and interact to create social inequalities that shape attitudes and behaviour towards those who are different, such as those with disabilities. The approach invites us to shift away from binary thinking and towards a more global human rights stance.

Therefore, higher education institutions have a critical role in shaping the future of society as places where students are educated and prepared for their future vocations. In line with inclusive curricula, the university should introduce disability discourse into models such as UFSS, which is mandatory for all first-years. Also, the institution should increase awareness and visibility by incorporating critical disability messages into all discussions, addressing all aspects; utilising disability posters on campus, and departments such as Residence Life, KovsieSport, UFS Centre for Teaching and Learning (CTL), and CUADS should collaborate to host disability events and heighten communication around it; leveraging other mega events such as national days, themed days, conferences, etc., to spread messages on disability and to build an inclusive society; hosting lectures, debates, and discussions on disability topics and promoting rights of persons with disabilities; and hosting student competitions on equality, justice, and human dignity. Through such interventions, the university will have a community that can facilitate the creation of inclusive spaces in their homes, communities, work, and social areas. Disability should be a collective responsibility to achieve an inclusive society that upholds the rights of persons with disabilities. 

Inclusive legislative policies (i.e., the White Paper on the Rights of Persons with Disabilities, 2018 and the Strategic Policy Framework on Disability for the Post-School Education and Training sector) should guide institutions to ensure that students with disabilities are protected. These documents further promote the right to (inclusive) education, as a universal access approach in education does not benefit only students with disabilities, but everyone.

News Archive

Heart diseases a time bomb in Africa, says UFS expert
2010-05-17

 Prof. Francis Smit

There are a lot of cardiac problems in Africa. Sub-Saharan Africa is home to the largest population of rheumatic heart disease patients in the world and therefore hosts the largest rheumatic heart valve population in the world. They are more than one million, compared to 33 000 in the whole of the industrialised world, says Prof. Francis Smit, Head of the Department of Cardiothoracic Surgery at the Faculty of Health Sciences at the University of the Free State (UFS).

He delivered an inaugural lecture on the topic Cardiothoracic Surgery: Complex simplicity, or simple complexity?

“We are also sitting on a time bomb of ischemic heart disease with the WHO (World Health Organisation) estimating that CAD (coronary artery disease) will become the number-one killer in our region by 2020. HIV/Aids is expected to go down to number 7.”

Very little is done about it. There is neither a clear nor coordinated programme to address this expected epidemic and CAD is regarded as an expensive disease, confined to Caucasians in the industrialised world. “We are ignoring alarming statistics about incidences of adult obesity, diabetes and endemic hypertension in our black population and a rising incidence of coronary artery interventions and incidents in our indigenous population,” Prof. Smit says.

Outside South Africa – with 44 units – very few units (about seven) perform low volumes of basic cardiac surgery. The South African units at all academic institutions are under severe threat and about 70% of cardiac procedures are performed in the private sector.

He says the main challenge in Africa has become sustainability, which needs to be addressed through education. Cardiothoracic surgery must become part of everyday surgery in Africa through alternative education programmes. That will make this specialty relevant at all levels of healthcare and it must be involved in resource allocation to medicine in general and cardiothoracic surgery specifically.

The African surgeon should make the maximum impact at the lowest possible cost to as many people in a society as possible. “Our training in fields like intensive care and insight into pulmonology, gastroenterology and cardiology give us the possibility of expanding our roles in African medicine. We must also remember that we are trained physicians as well.

“Should people die or suffer tremendously while we can train a group of surgical specialists or retraining general surgeons to expand our impact on cardiothoracic disease in Africa using available technology maybe more creatively? We have made great progress in establishing an African School for Cardiothoracic Surgery.”

Prof. Smit also highlighted the role of the annual Hannes Meyer National Registrar Symposium that culminated in having an eight-strong international panel sponsored by the ICC of EACTS to present a scientific course as well as advanced surgical techniques in conjunction with the Hannes Meyer Symposium in 2010.

Prof. Smit says South Africa is fast becoming the driving force in cardiothoracic surgery in Africa. South Africa is the only country that has the knowledge, technology and skills base to act as the springboard for the development of cardiothoracic surgery in Africa.

South Africa, however, is experiencing its own problems. Mortality has doubled in the years from 1997 to 2005 and half the population in the Free State dies between 40 to 44 years of age.

“If we do not need health professionals to determine the quality and quantity of service delivery to the population and do not want to involve them in this process, we can get rid of them, but then the political leaders making that decision must accept responsibility for the clinical outcomes and life expectancies of their fellow citizens.

“We surely cannot expect to impose the same medical legal principles on professionals working in unsafe hospitals and who have complained and made authorities aware of these conditions than upon those working in functional institutions. Either fixes the institutions or indemnifies medical personnel working in these conditions and defends the decision publicly.

“Why do I have to choose the three out of four patients that cannot have a lifesaving operation and will have to die on their own while the system pretends to deliver treatment to all?”

Prof. Smit says developing a service package with guidelines in the public domain will go a long way towards addressing this issue. It is also about time that we have to admit that things are simply not the same. Standards are deteriorating and training outcomes are or will be affected.

The people who make decisions that affect healthcare service delivery and outcomes, the quality of training platforms and research, in a word, the future of South African medicine, firstly need rules and boundaries. He also suggested that maybe the government should develop health policy in the public domain and then outsource healthcare delivery to people who can actually deliver including thousands of experts employed but ignored by the State at present.

“It is time that we all have to accept our responsibilities at all levels… and act decisively on matters that will determine the quality and quantity of medical care for this and future generations in South Africa and Africa. Time is running out,” Prof. Smit says.
 

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