Beyond the Diagnosis: Understanding the Educational Barriers of Marfan’s Syndrome Through a Capabilities Approach by Emma Petrie 

Postgraduate Taught MEd in Inclusion and Special Educational Needs 

Introduction:  

The idea of inclusive teaching is prevalent, with over 70,000 students in mainstream in the UK education system who are under Special Educational Needs (SEN) (ccea.org.uk, 2023). However, students with a chronic illness such as Marfan’s Syndrome (MF) do not always get this opportunity, leading to educational neglect. For example, Weiler et al (2014) state that “physical education…for children have a demonstrable positive impact on physical health, affective social and cognitive function” A child with Marfan Syndrome is not able to participate in contact sports (Marfan Trust, 2023). If schools do not put in place the correct provisions for sports, students with MF are being limited in their capability, impacting their cognitive ability. MF, a rare hereditary connective tissue disorder (Warnink-Kavelaars et al., 2019, p.1884), creates physical, emotional and social barriers that filter into educational life in areas such as “physical activities, schooling and job opportunities and self-image” (Warnink-Kavelaars et al., 2019, p.1884).  

Children with MF experience social injustice, which Levy (2019, p.6) explains as “the denial or violation of economic, sociocultural, political, civil or human rights…based on the perception of their inferiority.” These barriers can filter into all aspects of life, such as healthcare, education and social inclusion. 

The Capabilities Approach (Nussbaum, 2011) is appropriate when studying the educational barriers and social injustice concerning MF. The approach is a “comparative quality-of-life assessment and theorising about basic social justice” (Nussbaum, 2011, p.18), focusing on an individual’s functioning and capabilities to ask: “What are people able to do and to be?” (p.18). I will examine how Bodily health, Emotions and Affiliations (p.33-34) are significantly impacted by MF to establish a comparative assessment of the educational barriers. Finally, I will suggest solutions to combat educational barriers and offer alternatives to what can be done within the education system to support students in promoting inclusive teaching for those suffering from Marfan’s Syndrome. I will base my analysis on anecdotal experiences and available literature to fully assess the implications based on the Capabilities Approach. 

Context: Marfan’s Syndrome: Educational Injustice 

According to the Marfan Trust (2024), about ‘1 in 3,000 people have Marfan Syndrome (MF) in the UK.’ Genetically caused by a variant of the FBN1 gene, it affects the tissues, “primarily skeletal, ocular and cardiovascular organ systems” (Nollen and Mulder, 2004). There is a range of ways that a student with MF can be restricted in their learning and life aspirations due to their diagnosis, and it is important to understand the implications of this long-term. 

MF is highly underdiagnosed or misdiagnosed because of the similarities to symptoms and other conditions. For example, MASS Syndrome is also associated with a mutation in the FBNI1 gene. This condition also impacts the skin and skeletal system; however, “the aortic dilation is mild…risk of aortic aneurysm rupture seems low” (Dean, 2002, p.100). The lack of a clear diagnosis for MF has a significant impact on a student’s education, as a child with MF can struggle with physical activities if teachers and support staff are unaware of a diagnosis, they will not be able to implement individual accommodations, leading to added risk to long-term health concerns (Marfan Foundation, 2017). Without having PLPs (Personal Learning Plans) (Department of Education, 2015) in place, students with MF may be deprived of having full access to educational life. This highlights clear educational inequalities and demonstrates how MF is an educational injustice.  

Students with MF are susceptible to bullying, which impacts their physiological well-being. It can be physical, verbal, social or cyber bullying (Digital, 2024), which normally targets individuals who are perceived as different, such as students with MF. Victims can deal with the onset of consequences such as depression and anxiety. Anti-Bullying Alliance found that “Fifteen-year-olds with statements of special educational needs were significantly more likely to be frequent victims of threats or acts of physical violence” (Anti-Bullying Alliance, 2021). Due to MF being a rare condition, there is a lack of data to highlight the statistics on students with MF who are bullied every year, however, The Marfan Trust outline in their guide for schools and colleges that due to “children with MFS may appear physically different to some of their peers, they may miss school due to medical tests…can put them at risk of bullying which needs to be monitored” (The Marfan Trust, 2023, p.15) Children and adolescents dealing with bullying who are not given adequate support and are taught different coping strategies other than social isolation or self-harm, will disrupt their functioning of engaging with school (Anti-Bullying Alliance, 2022) This highlights how important it is for schools to ensure that children with any disability are made to feel safe, and explains why children with MF can be harmed (through bullying) or marginalised (being too different from their peers).   

Case Study:  

Moving away from the broader context, I will focus on my experience working with a child with Marfan Syndrome (MF), Tyler. Tyler is a 14-year-old boy who, before his MF diagnosis, was a healthy boy who lives in Northern Ireland and is studying his GCSES; he was diagnosed with MF earlier this year (2024). As Tyler has only recently been diagnosed with MF, the school have not yet put a formal Individualised Education Plan (IEP) in place, which impacts his ability to feel at ease as much as he can due to the lack of formal access arrangements in place at this time, this will be discussed further on. Tyler experiences symptoms such as joint pain, weak aorta and visual impairments. However, he does not let his condition get the best of him; he is extremely bright and loves to learn. Despite all of this, his condition has had consequences on his educational experiences.  

In a classroom setting, Tyler can experience pain in joints and fatigue, impacting his ability to concentrate and stay on task and in extreme cases, influence his attendance. For example, when studying History and English, there is a lot of writing required, which results in considerable pain in his hand. This means getting all the information written down can be difficult, and he will need assistance with this. If Tyler needed a classroom assistant, this could result in him potentially being a target for bullying. This has impacted Tyler significantly, with low self-esteem and resulted in him being withdrawn and not willing to participate in group activities. In addition, if Tyler must attend any medical appointments, it can be hard for him to build and maintain social relationships, resulting in him feeling left out.  

Tyler struggles with engaging in physical education, and any contact sports such as rugby or football, any head impact can directly affect the eyes, due to acceleration or deceleration, potentially resulting in worsening lens dislocation or retinal detachment (Marfan Foundation, 2017). This limits his ability to fully engage in all aspects of school life. This ultimately limits Tyler’s ability to participate consistently in academic and social life, and so he is not able to gain insightful knowledge from peers in group activities. Consequently, Tyler struggles to get involved in immersive and collaborative learning environments.    

The Capabilities Approach:  

The Capabilities Approach (CA) is a theoretical approach to questions of social justice. The approaches “take each person as an end, asking not just about the total or average well-being but about the opportunities available to each person” (Nussbaum, 2011, p.18). This normative framework looks at three areas: the assessment of individual well-being, an evaluation of any social arrangements and the policies to bring about social change. In doing this evaluation, it has two main principles, as Nussbaum explains by taking each person as an end, meaning recognising an individual’s ability to make their own decisions and being able to live their own life (2011, p.35). Second is being pluralistic about values, accepting that a single conception about what makes life valuable does not exist, and individuals will appreciate different things and have different aspirations. 

CA asks the central question: “What is each person able to do and be” (p.18). It asks this question to analyse a person’s real opportunities because every individual should have freedom of choice, and minimally just societies should promote substantial freedoms for their citizens. Central to this approach is understanding the difference between capabilities and functioning’s.  Functioning’s are active realisations achieved through being healthy or having social connections, they are the being and doings (p.25). For example, beings are being well-nourished and educated, the doings are travelling and voting in elections. Capabilities differ from this as they are an individual’s real freedom to achieve functions that are realistic to achieve (p.20). For example, going shopping is the functioning, but the real opportunity to go shopping is the corresponding capability, the freedom to go shopping. Nussbaum argues that capabilities are ‘non-fungible’, meaning they cannot be exchanged or substituted for each other without hindering their exclusive value. For instance, the capability of Bodily Integrity cannot be replaced by Play, as both are needed to have a dignified life. 

Nussbaum recognises 10 Central Capabilities that are required to have a dignified life. Including Affiliation, Life, Bodily Health, Bodily Integrity and Emotion. Each capability should have a threshold level of functioning, meaning there is a minimal level of capabilities that individuals must have to be able to grow (p.40). If this is not in place, individuals cannot exercise their freedoms fully. For instance, if an individual does not have access to health care, they are unable to reach the threshold level of functioning in bodily health, therefore limiting their ability to access education and further their career. Hindering the ability to have human dignity. Nussbaum explains that the concept of capabilities is divided into two areas: combined capabilities and internal capabilities. Internal capabilities refer to “trained or developed traits…in interaction with the social, economic, familial and political environment” (2011, p.21). For example, learning political skills or sewing.  Combined capabilities are the incorporation of internal capabilities with outside factors that enable an individual to carry out their internal capabilities without restrictions. For instance, “Vasanti’s combined capabilities are the totality of the opportunities she has for choice and action in her specific political, social and economic situation” (p.21)  

Furthermore, capabilities such as Affiliation and Practical Reason are architectonic, indicating that they “organise and pervade each other” (p.39) For example Affiliation, being able to engage in social situations (p.34) is architectonic as it explains when the others are in play with human dignity, they are automatically integrated with it”. In addition, the ideas of capability security (the assurance that individuals can maintain their capabilities), corrosive disadvantage (situations where certain disadvantages undermine the individual’s capabilities) and fertile functions (functioning’s that enhance the development of the other capabilities) (pp.44-45). The Capabilities Approach questions other approaches such as the GDP approach and research-based approach, arguing that the idea of income and wealth are not good advocates for what people can do and be and that an increase in economic growth does not mean the quality of life will be improved in key orders such as education and health.  

CA is relevant when analysing Marfan Syndrome (MF) as it emphasises how institutions such as the education system can limit capabilities and functioning’s. For example, a student with MF may lack the capability for Bodily health because of a lack of diagnosis, impacting their school attendance. By having a focus on freedoms, CA allows for the evaluation of social inequalities, expanding an individual’s substantive freedoms and how we can support their well-being.  

Application of the Capabilities Approach to Marfan’s Syndrome: 

As I explained in my introduction, I will focus on three central capabilities, Bodily health, Emotions and Affiliation (pp.33-34), with a focus on Tyler’s experiences. Firstly, looking at Bodily Health. Nussbaum explains bodily health as “being able to have good health…to be adequately nourished” (p.33). Due to the nature of Marfan Syndrome being a “systemic disorder of connective tissue” (Judge and Dietz, 2005, p.1965), it causes joint hypermobility (Dean, 2002) meaning loose ligaments which can cause pain and increase the risk injury such as dislocated joints, impacting his internal capabilities such as mobility and physical resilience. The pain caused by joint hypermobility puts Tyler below the threshold level of functioning that he needs to, for example, sit in a classroom for an hour and take notes consistently, limiting his practical freedoms. Tyler is not able to reach the threshold level of functioning in Bodily health required for him to fully participate in class, and so his autonomy is limited. 

The internal capabilities that are required for education, such as being focused and present during class, are extremely difficult for Tyler due to constant pain. For example, due to Tyler’s height, a normal desk and chairs are not appropriate for him, sitting a small, cramped desk (Marfan Trust, 2024) can cause physical pain which reduces his ability feel comfortable in class, and causes stress, this impacts his academic performance, meaning he is at a corrosive disadvantage to his peers. Furthermore, Tyler’s combined capabilities are limited as schools are not equipped with the required resources to assist Tyler with his pain, such as access to a school nurse or having access to a hygiene room. These external factors restrict Tyler in being able to pursue the real freedom in Bodily health in an educational setting, the impact of his pain, attaining the threshold level of functioning and having fertile functioning in a wider educational context.  

Secondly, Nussbaum explains the capability of Emotions as “being able to have attachments to things and people…not having one’s emotions development controlled by fear and anxiety” (2011, p.33). For students with Marfan Syndrome (MF) the physical traits associated with the disorder such as a “thin and slender…disproportionately long arms and legs” (Jain and Pandey, 2013, p.1) can shine a spotlight on Tyler which can lead to social exclusion, which will impact his emotional experiences and lower his self-esteem preventing him from reaching the threshold. In the Capabilities Approach (CA) emotions will include Tyler’s threshold level of functioning and whether he has fertile functioning alongside capability security. All of these are needed for self-acceptance and to build a positive mindset.   

Tyler’s internal capabilities such as resilience and body confidence are eroded when he experiences of social exclusion due to his physical appearance. This can intrude on his fertile functioning, where his capability to develop his self-confidence and be able to trust others to grow in building and maintain social connections. For instance, if Tyler deals with unconstructive or negative comments surrounding his physical appearance, he struggles with feeling accepted and wanted in the school community, he can shut down, and his communication with others decreases, leaving him feeling lonely and anxious. The combined capabilities intertwined with the capability of emotions is that if schools don’t have an enforced anti-bullying policy in place it limits a child’s ability to reach the threshold, therefore restricting Tyler’s combined capabilities. The UK government outlines that by “effectively preventing and tackling bullying, schools can help create a safe, disciplined environment where pupils can learn and fulfil their potential” (Department of Education, 2017). By schools becoming more diverse, and the educational system becoming more inclusive, will help Tyler, achieve the threshold of emotion as a capability, which is required for fertile functioning. It enhances the understanding and development of emotional resilience, allowing for a purposeful and dignified life within an educational setting.  

Finally, the capability of Affiliation, explained as “be able to live with and toward others…engage in various forms of social interactions” (Nussbaum, 2011, p.34). It is clear by Nussbaum’s explanation that Affiliation relates to social relationships and having respect to be able to achieve and dignified life. Students with MF, such as Tyler, the limitations due to “fear of musculoskeletal injuries… aorta and eye problems” (Warnink-Kavelaars, 2019, p. 1886) can interfere with their ability to partake in social activities such as sport and extracurricular activities.  

For Tyler, his development of internal and combined capabilities is compromised. Internal capabilities such as building positive relationships are key for having a dignified life, the health risks-imposed limits Tyler’s ability to engage in sporting activities, and possibly extracurricular activities such as rugby, basketball and football (Marfan’s Trust, 2024). Leading to isolation and not being able to maintain or develop social relationships within and outside of an educational setting. The combined capabilities impacted are critical: by not having an inclusive environment for Tyler, he is unable to adapt to social situations that help accommodate his condition, and therefore, he is unable to maintain the threshold level of functioning. As Affiliation is an architectonic capability (Nussbaum, 2011, p.39), if he does not have the adaptable environment needed, it has an overall impact on capabilities such as bodily health, emotions and practical reason, which has an overall impact on his fertile functioning and leaves him at a corrosive disadvantage.  

What can we change? 

There are several ways in which the education system can adapt to ensure that all three capabilities discussed are supported in a student with Marfan Syndrome’s (MF) learning experience. Each capability needs adaptations for both internal and external capabilities to ensure a dignified life is achieved. 

Firstly, schools should have in place an IEP (Individualised Education Plan), which “describes the nature of the child…additional support needs, how these are met, the learning outcomes to be achieved and specifies what additional support is required” (www.eastlothian.gov.uk, 2024). Focusing on the capability of Affiliation, an IEP is essential, by putting extra accommodations in place, such as having a buddy system in the school, someone Tyler can build a relationship with, who helps him, and who he can rely on, would ensure a level of inclusivity within school life. IEPs should include input from parents, teachers, other professionals and most importantly, Tyler. All should be included in “agreeing to the targets, and in implementing, monitoring and reviewing the plan” (www.eastlothian.gov.uk, 2024). By providing accommodations, states in the IEP, such as a buddy system, can create a nurturing, supporting learning environment, enabling Tyler to build important relationships within his school community.  

Secondly, by applying for access arrangements with the Education Authority, such as extra time, scribe, or a computer (Education Authority NI, 2024), supports Tyler’s capability of Bodily Health and Emotions. The symptoms that Tyler faces, such as joint pain, writing for long periods can be difficult and fatigue, within an examination setting this can be a corrosive disadvantage to his results and overall education and career outcomes. With access arrangements in place, it ensures he has equal opportunities when taking exams and “levels the playing field” (Education Authority NI, 2024). By removing this additional strain on Tyler, he can fully engage in his studies, without anxiety or fear of not having limitations on his freedoms, resulting in him being able to flourish in his learning and his overall well-being. 

Finally, as explained, physical activity is extremely difficult for Tyler; normal physical education classes are not appropriate for him. However, modifications to this will improve his threshold of functioning across all three capabilities discussed. Changes in his physical activities, such as instead of doing contact sports, he does swimming, or cycling at a slower pace (Marfan’s Trust, 2024), will reduce strain on his heart and joints, but he is still able to take part. It will help him build relationships and increase his confidence; he will be able to have fertile functioning. By offering an alternative for Tyler and other students with Marfan Syndrome, he will be able to safely participate in physical education, establishing an inclusive school society, and reducing the risks of feeling unsafe and excluded.     

Conclusion:  

The Capabilities Approach supports the concept that all 10 Central Capabilities are essential to achieve a dignified life (Nussbaum, 2011, p.33), and this includes an educational setting. By safeguarding students with Marfan Syndrome (MF) have the freedoms to access educational life to the fullest, the CA highlights that the education system cannot all into the concept of ‘one-size-fits-all’. As explained, accommodations such as extra time, changes to physical education and having an IEP in place will make a massive impact and will help uphold the threshold for the capabilities of Emotions, Bodily Health and Affiliation. Ensuring a child with MF has access to what they need to flourish in education will have an impact on their career prospects. Through the solutions I have discussed, it will empower and enable a student with MF, such as Tyler, to feel confident and respected in all aspects of physical, social and academic life. The CA helps us understand how important these 10 Central Capabilities are, how they are non-fungible; they can’t be traded, they all need to be present to ensure fertile functioning for every individual with MF.   

References 

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