Defying the Myth
A photographic journal illuminating the daily challenges and triumphs faced by families with children living with severe disabilities
© Carol Allen-Storey
Parenting and caring for a child with severe disabilities is an immensely complex affair. Parents must decide upon a range of decisions that determine the well-being of their children, from surgery and therapies, to education, employment and housing. They must become experts in negotiating the endless bureaucracy of public institutions, which demand that they ‘prove’ their need for assistance. The situation is worse particularly for those who face the dual stigmas associated with single-motherhood and raising a child with disabilities, and are often treated as social outcasts exploiting the welfare system.
For these mothers and care-givers, the experience of bringing up a child gives rise to a range of conflicting emotions; joy and pain, longing and regret, anger and frustration. The lack of support from local and national agencies forces many into poverty, leaving them without appropriate housing, employment opportunities or access to childcare. Healthcare professionals and local councils are inadequately trained to support the parents of children with disabilities, and single mothers in particular, are frequently discriminated against. Isolated and exhausted, in unsuitable accommodation and lacking the education and treatment their children deserve, these families face insurmountable challenges. Far from their support networks, they are imprisoned in cities like London in the UK today.
Yet in the face of such adversity, the parents with whom I collaborated as part of ‘Defying the Myth’ told me about the unconditional love they have for their children, what they have learnt from them and the joy they bring which helps them to overcome their daily challenges. These moments of resilience, love and compassion are rarely depicted. In capturing their extraordinary strength, this journal challenges the perceptions and myths surrounding disability and parenthood, whilst highlighting the immense social challenges parents and care-givers face from the moment of their child’s diagnosis.
The aim of this photographic project is to create a visual and written platform for these families, the primary caregivers raising children with disabilities, narrating their daily lives, challenges and triumphs. This is to raise public awareness about the challenges of managing the world of a child with severe disabilities, and to provide a vibrant voice to the voiceless. Headlines today, in all guises of the media are focussed on breaking news, migration, ISIS, political ’Fake News’, global warming, sport, and celebrity. Rarely is an in-depth story published about the reality of this disenfranchised community. The key aim of this project is to create an empathetic profile of the families to provide insight and trigger the mandate to create real opportunities to improve the quality of their lives. Whilst historically documentaries about disability focus on children, this essay holistically addresses the family as a unit.
TIMING AND IMPACT
The project was initiated in February 2016 will take approximately another year to complete, allowing time to develop highly personal and emotive stories, with the objective of capturing an ethical, in-depth body of work from an anthropological perspective. The images and narratives recorded will utilise a combination of still photography and video, thus generating a myriad of marketing opportunities and pathways to engage the wider public. This will culminate with a major exhibition on the Southbank in London along with a book. Crucially, there will be targeted and timely placements in newspapers, magazine, broadcast and social media. Panel discussions with the families will be a vital platform featuring the families and hosted by a well-known media personality. The IVY Club in London is launching the project’s first talk on Monday the 12th June 2017 with Frank Gardner BBC correspondent chairing the panel, which will include the women being featured in the project. There will be a further presentation at the Frontline Cub in the autumn. A proposed blog from this ‘collective’ of families can provide a powerful tool for dialogue and be utilised as pressure lobbying to bring attention to the needs of these marginalized families.
The voyage these heroic women travel every day of their lives defines what moral fibre, humanity and decency is all about. I had the privilege to work with one of these women six years ago for a project commissioned by Save the Children about poverty amongst children in the UK. At that time, Shoulana was a single mother raising two children with limited resources. Her elder son Mekhey, age 7, was severely mentally disabled, her youngest Gabriel a toddler. In spite of the horrific and punishing schedule of raising her sons she pursues life in devotion of her children, at great sacrifice to her own life ambitions. During the project, we had forged a friendship, which has continued over these past years. In observing her daily challenges, I was inspired by her to undertake this very personal project that illuminates the travail of other families living with disabled children. Shoulana introduced me to her wider network of families responsible for raising children with a variety of different disabilities, ethnicities and race, all residing in London. Since the project was initiated, I have been working with three of these families, including Shoulana whom I have been documenting this past year. One family has a daughter suffering from Downs’s syndrome and the other, a son who is autistic. Their worlds and quest for survival have humbled me. I have been inspired by these extraordinary women of substance that have allowed me intimacy into their lives. Bless them all for their trust and unyielding courage.
- Carol Allen-Storey