Cerebral Palsy and Educational Inequality in United Kingdom: A Capabilities Approach by Chukwubuikem Nzeka PhD

Introduction

Education is a human right and an empowerment tool that enables people to acquire the skills, attitudes, values, awareness and capabilities they need in order to live their lives with dignity (UNESCO, 2023). However, this right is not experienced equitably by all. In the United Kingdom, approximately one in every four hundred babies is diagnosed with Cerebral Palsy, yet these affected children are usually faced with marked differences in diagnosis, educational support, and long-term outcomes (Children’s Commissioner, 2024). Furthermore, there are many children with Cerebral Palsy (CP) in the United Kingdom who experience profound inequalities (Campbell, 2023). These inequalities include exclusion from attending mainstream school, lower educational attainment, lack of availability of assistive devices and negative social attitudes towards disability. These disparities reveal broader systemic shortfalls in policy, resource distribution and, social beliefs which define the lived realities of children with CP from being able to thrive (House of Commons Public Accounts Committee, 2022; Azpitarte, 2024).

This article uses Nussbaum’s Capabilities Approach (CA) to understand the inequalities faced by children with CP. The CA does not measure justice by resources or utility, but rather in terms of “what people are able to do and to be” (Nussbaum, 2011, p.18). The CA also emphasises notions of dignity and respect. The capability approach theory maintains that every person deserves the real freedom to live a life worthy of human dignity, which requires access to essential capabilities such as health, education, and political participation. For Nussbaum, respect means recognizing each person’s equal moral worth and ensuring that social arrangements allow individuals to shape their own lives.

I will discuss the experiences of children with CP in UK schools drawing on three of Nussbaum’s core capabilities: Bodily Health (mobility, physical well-being, medical access); Senses, Imagination, and Thought (cognition, communication, creativity, and learning); and Affiliation (social inclusion, relationships, and respect). I will explore why inequalities continue to persist, how they become visible in education and what a capabilities-informed approach means for policy and practice aimed at enabling everyone the chance of a dignified, flourishing life.

Inequality and Cerebral Palsy in the UK

Cerebral palsy (CP) is a general term for a group of unchanging but non-progressive motor impairments due to brain-associated injury or abnormal development during a critical period in the early years (Rosenbaum et al., 2007). Severity and accompanying disabilities range from mild motor difficulty to severe physical, sensory or cognitive impairments. In the UK, CP impacts approximately 1,800 children per year (Cerebral Palsy Alliance, 2023). Almost all need special educational needs and disabilities (SEND) support, which is frequently formalised via Education, Health and Care Plan (EHCP). Whilst statutory provisions (Equality Act 2010 and SEND Code of Practice 2015) exist to prevent marginalisation and capability deprivation within UK schools, learners with CP are still being marginalised and capability-deprived in schools around the UK (House of Commons Public Accounts Committee, 2022; Campbell, 2023).

However, inequalities persist in the who, how and when of that support is given. A population-based study of 5,669 children with CP in England found that 95% had SEND provision identified during nursery or primary school, however there was a socioeconomic and gender gradient to access: those from disadvantaged areas and females were unlikely to have EHCPs put in place when they needed them (Black et al., 2019). Lack of early identification and lack of consistent cross-working across education and health contribute to further disadvantage. (National Audit Office, 2019; Ofsted and CQC, 2021).

Attitudinal barriers have been the common cause for educational inequality of children with CP (Colver et al., 2012). Teachers may confound physical impairment with mental retardation, which can result in low expectations and reduced opportunities for interaction (Norwich, 2020; Phtiaka, 2017). Research shows that some teachers have low expectations of children with CP or equate physical disability to cognitive deficits (Lindsay & Dockrell, 2020). Social exclusion and bullying can occur frequently, especially in general services which have weak inclusion programmes in place (Hemmingsson et al., 2019).

Schools across the United Kingdom have a legal duty to make reasonable adjustments for disabled pupils; however, education is a devolved responsibility, resulting in different legislative frameworks across the four nations. In England, provision is governed by the Equality Act 2010 and the Special Educational Needs and Disability (SEND) Code of Practice (Department for Education [DfE] & Department of Health [DH], 2015). Wales operates under the Additional Learning Needs and Education Tribunal (Wales) Act 2018 (Welsh Government, 2021), Scotland under the Education (Additional Support for Learning) (Scotland) Act 2004 (Riddell & Weedon, 2014), and Northern Ireland under the Special Educational Needs and Disability (Northern Ireland) Order 2005. Although these frameworks share a commitment to inclusive education, differences in legislation and implementation contribute to variation in the provision of support across the UK (Riddell & Weedon, 2014).

Despite these statutory protections, children with special educational needs and disabilities (SEND), including those with cerebral palsy (CP), continue to experience educational inequalities. Recent evidence found that 95% of children with CP received some form of SEND provision; however, the timing and level of support varied, with children living in more socioeconomically deprived areas experiencing lower access to Education, Health and Care Plans (Lewis et al., 2024). Such disparities demonstrate that formal legal entitlements do not always translate into equitable educational opportunities. From a capability’s perspective, disability intersects with poverty, geography, and other social determinants to produce cumulative disadvantages that constrain children’s educational participation and future life chances (Wolff & De-Shalit, 2007).

Physical barriers also persist. Some UK schools are still only partially accessible (not all classrooms, lack of ramps/ lifts or adapted toilet etc.), which limits the mobility and participation of students (UNICEF, 2021). Access to physiotherapy, occupational therapy and assistive technology (e.g. eye-gaze systems) is variable and frequently linked to local authority budget constraints. Further, there is a lack of specialist training to teacher’s which often results in low expectations from children who are stigmatized and socially excluded (Shakespeare 2013). I will next explore how these inequalities impact on the wellbeing of children with CP through the CA.

The Capabilities Approach

Nussbaum (2011, p. 18) defines the Capabilities Approach as an evaluative framework that asks “what people are actually able to do and to be”, rather than what resources or happiness levels they possess. This definition signals a departure from an emphasis on economic opportunities or preferences towards focusing directly on the substantive freedoms such as real opportunities to do something in life that, Nussbaum (2011) argues, ‘one has reason to value’ (p. 18). The CA focuses not only on achievements, but on the opportunities that make them possible. It evaluates the quality of life and social justice by whether individuals have real opportunities to grow and develop as human beings in accordance with dignity and respect. For Nussbaum, the CA is both a philosophical theory of flourishing and a political philosophy of justice in its account of securing basic entitlements required for a life with dignity (Nussbaum, 2011, pp. 18–19).

The CA’s central question is: “What is each person able to do and to be?” (Nussbaum, 2011, p. 18). Capabilities are “substantive freedoms” in Nussbaum’s terms which gives the real opportunities to achieve and enact valuable states of being and doing (2011, p. 20). They capture the range of opportunities open to individuals, not merely their realised functioning. Functioning are the “beings and doings” of which people are able to be and do achieve (Nussbaum, 2011, p. 25). They are “realised” states of human life such as being in good health, educated and part of a community (Nussbaum, 2011, p. 25). The distinction between capabilities and functioning is freedom, or the ability to choose. Capabilities are a person’s actual freedoms or opportunities; functioning are what the individual chooses to do with his/her capabilities. Respect for human dignity would preclude use of functioning as a focus, for Nussbaum it is capabilities rather than functioning that should serve as the focus. For instance, capacity for education is a matter of freedom given the wholescale, evidence-rich benefits it brings, but enforcing specific achievements may involve paternalism.

Dignity and respect for humans underpin Nussbaum’s work. According to Nussbaum, every human has intrinsic value that demands political and moral consideration regardless of the status they may occupy within a society. The CA regards humans as ends in themselves, and should never be used as the mere means to someone else’s wellbeing or advantage (Nussbaum, 2011, p. 30). Dignity exhumes a requirement that everyone should have the chance to develop and exercise their human powers. A culture that abandons human beings to an existence without vital capacities is not treating them as fully human. Respect, then, is operationalised by public policy guaranteeing everyone basic (threshold) core capabilities essential for dignified lives. (Nussbaum, 2011, p. 30).

Nussbaum identifies ten central capabilities which are, life; bodily health; bodily integrity; senses, imagination, and thought; emotions; practical reason; affiliation; concern for other species; play; and control over one’s environment (2011, pp. 33–34). These are central, because they contain the essential aspects of human well-being and offer a universal yardstick against which to measure justice. Nussbaum recommends these ten because they each reflect something about human wellbeing that we would want to protect as a dignity for all people. They arise out of philosophic reflection and interaction across cultures, with the intention to lay out what it is to live a life worth humanly respecting.

Nussbaum differentiates internal capabilities by qualities of a person including skills, health, affectionate relations and integrated capabilities by the inclusion of those external circumstances that make possible the development and exercise of the former (2011, pp. 21–22). For example, an inner capability to reason would require both education and social support to be actualised as a combined capability. Thus, society is crucial in the enabling of capabilities via institutions, public goods, and cultural conventions. Justice is the demand to facilitate environments in which both internal and collective capacities can thrive.

The threshold standard of functioning is the lowest level compatible with a life of dignity for each central capability (Nussbaum, 2011, pp. 33–34). Falling below this threshold constitutes a denial of justice. A key feature of the capabilities approach is the principle of non-fungibility, which holds that central capabilities are not interchangeable or substitutable. For example, a person’s inability to attain adequate bodily health cannot be compensated for by greater opportunities for political participation or educational achievement. Each is intrinsically valuable. Architectonic capabilities, like practical reason and affiliation or attachment, are foundational because they build and sustain all the other capabilities (Nussbaum, 2011). The point is that the capacity to reason about a life and make social connections supports the effective exercise of other liberties (Nussbaum, 2011, pp. 39–40).

Following on the analysis by Wolff and De-Shalit (2007), Nussbaum (2011, pp. 41–42) offers three interconnected concepts. ‘Capability security’ is the stability of one’s capabilities over time, and justice requires that it not be precarious or arbitrary. ‘Corrosive disadvantage’ represents the idea that one source of deprivation tends to create other deprivations such as bad health hindering education and work. In contrast, ‘fertile functioning’ refers to achievements that promote several dimensions at once (education promoting health, social integration and autonomy). These are messages that stress the interdependence of human abilities and point to the importance of policies which protect them as a unity.

Application of the Capabilities Approach to Cerebral Palsy in UK Education

By using Nussbaum’s CA in the context of children with CP, it could be demonstrated that educational inequalities are based on capability deprivation rather than a deficit conception. Using three capabilities namely, Bodily Health; Senses, Imagination and Thought; Affiliation, these highlights the presence of barriers that form obstacles to children’s lived experience and learning in dignity.

Bodily Health

Bodily health according to CA is “being able to have good health, including reproductive health; to be adequately nourished; to have adequate shelter” (Nussbaum, 2011, p. 33). For children with CP, this CA depends on receiving regular therapeutic intervention, adaptive equipment, and having access to learning environments. Children with CP experience below threshold level of functioning with respect to their health. Some of the physical problems affecting children with CP include spasticity, fatigue and musculoskeletal pain, while some also experience concomitant sensory or cognitive deficits (NIHR, 2023). They constrict the interior capacity of mobility and well-being. External supports, such as physiotherapy, occupational therapy, adaptive seating and accessible buildings are needed to help internal capacity become functioning (NIHR, 2023). These issues, together with variations in waiting times and inequality of provision also serve to undermine provider continuity (Black et al., 2019). Transport or classrooms that are not accessible also hinder attendance and participation. There are also many children with CP who don’t have the freedom of movement, the ability to handle pain or even to preserve their health during a day at school (NIHR, 2023). Inequitable access to treatments disrupts the continuity of learning (Hale et al., 2018). These are the chains that promote corrosive disadvantage, ill health and missing school impact on learning which limits prospects of employment and independence (Abrahamsen et al., 2021). Supply is often erratic, therapy hours vary, equipment funding expires and capability decisions become undermined. As Nussbaum (2011) underscores, justice requires that basic capabilities such as stable and equitable access to healthcare, therapy, and physical accessibility be securely provided for over time as these ensure capability security (Nussbaum, 2011, p. 41).

Senses, Imagination, and Thought

This capability refers to “the ability to use the senses, to imagine, think, and reason in a truly human way” (Nussbaum, 2011, p. 33). Even though the majority of children with CP have preserved mental capacities, they might present speech/hearing or fine motor impairments with consequently affect communication and performance limitations, therefore impacting their CA. Untreated, these physical issues can obscure cognitive function. Success in inclusion means accessible curricula, assistive technology for communication (an example of which is speech-generating devices), and alternate assessments. Having access to assistive technologies (eye-gaze systems or speech-generating devices) is essential for changing internal capability into functioning (Florian & Spratt, 2013). However, uneven resource distribution, insufficient teacher training, and rigid assessments constrain this process (DfE, 2023). Without inclusive schooling, children with CP cannot engage in imagination or critical thought, and their educational potential remains untapped rather than actualised. Schools that provide assistive communication early and train teachers in inclusive methods promote “fertile functioning,” where learning encourages independence, artistry, and dignity.

Affiliation

Affiliation is the “capability to live with others, show concern, and participate in social interactions with self-respect” (Nussbaum, 2011, p. 39). Emotional and social abilities are not in and of themselves restricted by cerebral palsy, but difficulty with communication or paucity may limit confidence/interaction with peers. Children with CP frequently face bullying, social exclusion, and low expectations (Shakespeare, 2013; UNICEF, 2021). Physical isolation, in special schools or individual classrooms, can reinforce a sense of being separate. When CP children are pitied or patronised rather than respected, their affiliation capability falls below the dignity threshold and this deprives them of the dignity which Nussbaum sees as key to human well-being, affecting their fertile functioning. Conversely, inclusive school cultures, peer-support programmes, and anti-stigma training produce fertile functioning that strengthen participation and emotional well-being.

Conclusion

Applying Nussbaum’s Capabilities Approach, it becomes evident from the analysis of inequality faced by children with CP in the UK that this is a matter of inability to enjoy fundamental human freedoms. The analysis indicates that children with CP may be denied three linked capacities such as Bodily Health; Senses, Imagination and Thought; and Affiliation, by the barriers they face in education and society. An evaluation of justice by the CA reveals that disability is not an individual misfortune, but a collective inability to foster conditions conducive to development of capability. Internal barriers combine with external pressures, lack of access, stigma to create insidious disadvantages that compound over time. The capability security is poor, given that local resources and policies change over time. These inequalities rob children of the dignity and the power to shape their own lives.

To ensure justice, then UK education must go beyond formal equality and promote fertility of capability for all learners in the following:

• Early identification and consistent support: Timely EHCP reviews, continued therapy, consistent provision when they move into adulthood.
• Resource Equity and Access: New schools should be universally designed where reliable access to assistive technology is available, and funding for local authorities is equitable.
• Inclusive Pedagogy: Support Curriculum adaptation, assessment flexibility and teacher training in CP and inclusive practice.
• Cultural and Attitudinal Change: Anti-stigma training, peer programmes and recognition of abilities in diversity.
• Policy Accountability: Enforcing SEND rights more robustly, honest reporting of attainment gaps and audits of local disparities.
• Education becomes a fertile functioning by guaranteeing that every child reaches a level sufficient for health, thought and social inclusion, roots enabling further participation in work, community and citizenship.

Using Nussbaum’s CA, the objective of education is to increase the real freedoms of every student to live “lives they have reason to value” (Nussbaum 2011, p.20). But for children with cerebral palsy to achieve this, it is not a matter of simply bringing them into schools; the schools have to be re-designed such that capability development and dignity and respect become the reason to be in education.

References

Abrahamsen, S., Bhuller, M., and Mogstad, M. (2021). School health programs, education, health, and welfare dependency of young adults. Institute for Fiscal Studies. https://ifs.org.uk/sites/default/files/output_url_files/WP202120-School-health-programs-education-health-and-welfare-dependency-of-young-adults.pdf

Azpitarte, F. (2024) ‘Failing children with Special Educational Needs and Disabilities in England: New evidence of poor outcomes and a postcode lottery at the Local Authority level at Key Stage 1’, British Educational Research Journal. Available at: https://bera-journals.onlinelibrary.wiley.com/doi/full/10.1002/berj.3930

Black, R.S., Weinberg, L.A. and Brodwin, M.G. (2019) Inclusive Education: Principles and Practices. 3rd ed. Boston: Pearson.

Campbell, T. (2023) Inequalities in provision for primary children with special educational needs and/or disabilities by local area deprivation. CASEpaper 231. London: London School of Economics. Available at: https://sticerd.lse.ac.uk/dps/case/cp/casepaper231.pdf

Cerebral Palsy Alliance (2023) Cerebral Palsy Statistics and Research. Sydney: CPA Research Foundation.

Children’s Commissioner for England. (2024) An invisible crisis: Children waiting years for neurodevelopmental assessments. London: Office of the Children’s Commissioner. https://www.childrenscommissioner.gov.uk

Colver, A., Rapp, M., Eisemann, N., Ehlinger, V., Thyen, U., Dickinson, H. and Parkes, J. (2018) ‘Self-reported quality of life of adolescents with cerebral palsy: a cross-sectional and longitudinal analysis’, The Lancet, 392(10156), pp. 142–152.

Colver, A., Thyen, U., Arnaud, C., Beckung, E., Fauconnier, J., Marcelli, M., McManus, V., Michelsen, S. I., Parkes, J., & Parkinson, K. (2012). Association between participation in life situations of children with cerebral palsy and their physical, social, and attitudinal environment: A cross-sectional multicenter European study. Archives of Physical Medicine and Rehabilitation, 93(12), 2154–2164. https://doi.org/10.1016/j.apmr.2012.07.011

Department for Education (2023) Special Educational Needs in England: January 2023. London: DfE.

Department for Education (DfE) (2023) Special educational needs and disability: analysis and summary of data sources. London: DfE.

Department for Education, & Department of Health. (2015). Special educational needs and disability code of practice: 0 to 25 years: Statutory guidance for organisations which work with and support children and young people who have special educational needs or disabilities. https://www.gov.uk/government/publications/send-code-of-practice-0-to-25

Florian, L. and Spratt, J. (2013) ‘Enacting inclusion: A framework for interrogating inclusive practice’, European Journal of Special Needs Education, 28(2), pp.119–135.

https://doi.org/10.1080/08856257.2013.778111

Hale, D., Bevilacqua, L., and Viner, R. (2018). Adolescent health and adult education and employment: A systematic review. Journal of Epidemiology & Community Health, 72(6), 465–471. https://doi.org/10.1136/jech-2017-209605

Hemmingsson, H., Lidström, H. and Nygård, L. (2019) ‘Access and use of school computers by students with physical disabilities: A case study’, Disability and Rehabilitation: Assistive Technology, 14(3), pp. 273–283.

House of Commons Education Committee (2023) Support for Children with Special Educational Needs and Disabilities in England. London: UK Parliament.

House of Commons Public Accounts Committee (2022) Support for children with special educational needs and disabilities. London: UK Parliament. Available at: https://publications.parliament.uk/pa/cm5801/cmselect/cmpubacc/85/8506.htm

Lewis, K. M., Nguyen, V. G., Zylbersztejn, A., Ní Chobhthaigh, S., Dearden, L., & De Stavola, B. (2024). Sociodemographic variation in the timing of recorded special educational needs provision in primary school in England amongst children with cerebral palsy: A staggered cohort study using the ECHILD database. NIHR Open Research, 4, 39. https://doi.org/10.3310/nihropenres.13864.1

Lindsay, G. and Dockrell, J. (2020) ‘The educational experiences of children with special educational needs and disabilities in mainstream schools: A UK perspective’, European Journal of Special Needs Education, 35(3), pp. 325–339.

National Audit Office (NAO) (2019) Support for pupils with special educational needs and disabilities in England. London: NAO. Available at: https://www.nao.org.uk/reports/support-for-pupils-with-special-educational-needs-and-disabilities-in-england/

National Institute for Health Research (NIHR) (2023) Educational trajectories of children with cerebral palsy in England: National cohort analysis. London: NIHR.

Norwich, B. (2020) Addressing Tensions and Dilemmas in Inclusive Education: Living with Uncertainty. 2nd edn. London: Routledge.

Nussbaum, M.C. (2011) Creating Capabilities: The Human Development Approach. Cambridge, MA: Harvard University Press.

Ofsted and Care Quality Commission (CQC) (2021) SEND: old issues, new issues, next steps. London: Ofsted.

Phtiaka, H. (2017) ‘Teachers’ attitudes towards disability and inclusive education in England: A systematic review’, European Journal of Special Needs Education, 32(4), pp. 491–506.

Riddell, S., & Weedon, E. (2014). Changing legislation and its effects on inclusive and special education: Scotland. British Journal of Special Education, 41(4), 363–381. https://doi.org/10.1111/1467-8578.12080

Rosenbaum, P., Paneth, N., Leviton, A., Goldstein, M. and Bax, M. (2007) ‘A report: the definition and classification of cerebral palsy April 2006’, Developmental Medicine & Child Neurology Supplement, 109, pp.8–14.

Shakespeare, T. (2013) Disability Rights and Wrongs Revisited. 2nd ed. London: Routledge.

UNESCO (2023) Recommendation on Education for Peace and Human Rights, International Understanding, Cooperation, Fundamental Freedoms, Global Citizenship and Sustainable Development. Paris: UNESCO. Available at: https://www.unesco.org/en/legal-affairs/recommendation-education-peace-and-human-rights-international-understanding-cooperation-fundamental

UNICEF (2021) Seen, Counted, Included: Using Data to Shed Light on the Well-being of Children with Disabilities. New York: UNICEF. Available at: https://data.unicef.org/resources/children-with-disabilities-report-2021/

Welsh Government. (2021). The Additional Learning Needs Code for Wales 2021. https://www.gov.wales/additional-learning-needs-code

Wolf, J. and De-Shalit, A. (2007) Disadvantage. Oxford: Oxford University Press.