Reflections on a Global Moment for Care

Damarie Kalonzo and Lauren Avery

Keywords: care, disability, gender, global south, policy

Mothers of children with disabilities in Bahia share their experiences of accessing services during a conversation circle. Credit: Lauren Avery

On the streets of Nairobi in Kenya, Magda sits forlorn after yet another daycare refuses to take in her daughter because of her disability. She needs the support of a daycare to give her a few hours to hawk goods on the city streets, despite its risks, to make enough to feed her family for the day. On the streets of Bahia in Brazil, another mother is in crisis. She’s having a breakdown overwhelmed by stress and exhaustion after walking from one medical centre to another in search of a diagnosis for her disabled son. These two mothers in the Global South, separated by the Atlantic Ocean and several countries in between, have a lot in common. Mothers of children with disabilities in Brazil and Kenya face similar barriers in the pursuit of dignified care for their loved ones and in their efforts to continue providing for their families. They battle rejection, abandonment, blame and stigma whilst navigating ableist systems and care infrastructure with little to no information and inadequate, under-funded and overstretched services. While these are local individualised experiences drawn from our empirical work and independent research projects, caregiving seems to be having a global moment. This current moment is a critical point in the trajectory of care and disability policy reform.

Budding international attention to care

2025 has seen two significant global initiatives seeking to address issues related to the vacuum that often exists between the disability, gender and care spaces, which have over time, slowly and tensely, begun to dialogue. In this blog we reflect on this global moment with caution, calling for the inclusion of intersectional voices often left out in these consultations. 

In July, the UN Special Rapporteur on the Rights of Persons with Disabilities, Heba Hagrass, presented her inaugural report to the UN General Assembly on ‘Care and support for children with disabilities within the family environment and its gendered dimensions’. In the report, she drew on submissions from multiple countries which concluded that carers of children with disabilities in families are usually women (specifically, mothers), and that barriers to care and support impact negatively on children and carers. Both groups can experience stigma, discrimination and abuse. 

Despite resistance within the disability rights movement to recognise discrimination-by-proxy faced by caregivers and particularly mothers of children with disabilities, this report goes a step forward in recognising what has been a long sidelined issue within the disability rights and women’s rights movements.  Many disability activists are hesitant to talk about the issues facing mothers or others providing unpaid care and support, as they themselves are either facing their own battles or have experienced medicalised or paternalistic approaches from parent movements. Equally, the women’s movement has historically failed to recognise barriers faced by disabled women, who, despite being stereotyped as perpetually dependent, provide care, as well as rely on care themselves. Yet persisting binary ideas that separate carer from cared for and disabled vs. non-disabled perpetuate the erasure of the experiences and activism of those located within the intersections of social justice movements. 

The report centred on the idea that if children with disabilities are to be included in their communities, and child institutionalization tackled, a stable family environment is key to ensuring this inclusion. In order to create such a family environment, we must face the reality that female caregivers face inequalities while trying to provide care and support to their children. The report also emphasised the need for care and support to be understood through social co-responsibility with states being the primary duty bearers for respecting, protecting and fulfilling human rights obligations through law, policy, public infrastructure and service delivery. The lack of public infrastructure and failed service delivery were central themes in our respective research projects as aspects that created barriers for children with disabilities and their caregivers. How social movements and governments choose to respond to the findings and recommendations in the Special Rapporteur’s report will determine how long this ‘moment for care’ lasts. 

Another global moment worth noting, is the UK government’s proposal for a Global Charter on Children’s Care Reform which has continued to receive support from states and civil society partners. The Charter aims to rejuvenate states’ commitments to existing international human rights conventions in order to accelerate deinstitutionalisation initiatives and prioritise family-based alternative care, such as kinship care (care within the extended family). While the UK continues its consensus-building and diplomatic efforts to bring on more signatories to the Global Charter, it has a duty to look inward and face the realities and failures of its own care systems. 

Systemic care failure in the UK

Whilst we celebrate the global initiative, it is imperative to comment on the deep hypocrisy of the UK government putting itself forward as a leader on deinstitutionalisation policy in the same year it proposed cuts to essential disability welfare and services that prevent institutionalisation. The proposed disability welfare cuts announced in 2025 include restricting eligibility for Personal Independence Payment, cutting the health element of Universal Credit for 16- to 22-year-olds, limiting access to free school transport and a rollback on Education, Health and Care Plans for children with disabilities. 

It is not clear how the UK government expects that cutting essential support and services to adults and children with disabilities comports with its commitment to the Convention on the Rights of the Child and the Convention on the Rights of Persons with Disabilities, the cornerstones of the Global Charter it is spearheading. Earlier this year, the UN’s Committee on the Rights of Persons with Disabilities wrote to the UK government with concerns over the proposed disability welfare reforms, recommending a comprehensive human rights assessment, after widespread protests by disability rights groups.

Furthermore, the UK government has been accused of failing to implement the UN Deinstitutionalisation guidelines. Last year, over two thousand Autistic people and people with learning disabilities were being housed in mental health institutions, often against their will, owing to a lack of community-based services. 

In addition, the UK government and local councils routinely blame parents of disabled children when public bodies that have a duty to provide support fail to do so. In some instances, the government sues parents, accusing them of fabricating or inducing illness. This systemic failure and failed service delivery leads to the early and preventable deaths of children with disabilities, which Prof. Sara Ryan terms ‘social murder’, because we know why people with disabilities are dying yet nothing is being done about it. Although the full extent of deaths caused by cuts to health and social care is unknown, the estimate was 57,000 between 2010 and 2014 alone. 

Bringing on board other perspectives

Unfortunately, this systemic failure intersects with other social justice issues like racism as in the tragic case of  Alphonsine Leuga (47) and her daughter Loraine Choulla (18), who were found dead in their council-owned Nottingham home. Alphonsine, who was severely ill from pneumonia, used her last dying moments to phone an ambulance asking for help for herself and Loraine who had Down’s Syndrome. The ambulance never came and Loraine died of malnutrition and dehydration weeks later. The breakdown in community around them, their stigmatisation and isolation left their neighbours questioning their own failure to recognise that the family needed help. At the inquest, it was noted that the family had earlier disengaged from social services. It’s important for scholars and activists to ask, why was this?

In their book, Mothering at the Margins: Black Mothers Raising Autistic Children in the UK, Malcolm and Green note how the triad of oppression (racism, misogyny and ableism) generates a multiplicity of burdens. They articulate the challenges racialised mothers of Autistic children face as they navigate care for their children through physical, psychological, cultural, practical, and temporal burdens. They note that being failed by services and systems across healthcare, education and social care, black mothers develop coping strategies rooted in “isolation and internalisation” in a process they call the “privatisation of trauma.” Malcolm and Green’s analysis sheds a castigating light on the tragedy of Alphonsine’s and Loraine’s deaths. Perhaps the stigmatizing effects of racialised existence in the UK which intersected with ableism and misogyny caused Alphonsine to withdraw from any contact with social services. From our own empirical work in Brazil and Kenya, withdrawal from public care infrastructure is often a sign of systemised neglect and frustration with systems that do not work or that wilfully ignore caregivers’ concerns and the needs of those they care for. 

Carers from all over the world, and the people with disabilities they care for, have a lot to say about the care systems and infrastructures they navigate. In this moment where care is in the global spotlight, local lived experience must be part of the conversation. And in a world where postcolonial and other periphery contexts are marginalised and Global North/Eurocentric views are prioritised, that is perhaps the greatest challenge of this moment. There needs to be conversations about global care chains, whereby labour flows from South to North, often into low paid and undervalued jobs. There needs to be conversations about how people who do rely on daily care, support and advocacy - usually by unpaid, unsupported women and girls - are represented in our disability movements. There needs to be conversations about how ableism intersects with racism, sexism, and colonialism. The promise of this global moment for care will be lost without the inclusion of intersectional perspectives on care, disability and gender.