At the start of 2012 I was 41, married and had two seemingly healthy young children. I was working as a special needs teacher in a multicultural autistic school. Six months later my two-and-a-half-year-old daughter was rushed to Great Ormond Street Hospital in London to have an operation to relieve the pressure that a golf ball-sized tumour was placing on her brain.
Surgery and a year of intensive chemo- and radiotherapy saved our precious daughter’s life but also took its toll; she has been left with a spectrum of needs – physical, cognitive and emotional.
The shock of diagnosis, the stress of treatment and understanding that I am now the parent of a disabled child is a journey that I am still travelling. To say it is not easy is an understatement, but it has gifted me with an insight that (thankfully) relatively few people experience and has inspired my academic path.
On my daughter's diagnosis, I entered a whole new world: making heartbreaking decisions for my child and her future development; talking with other parents around the world going through similar journeys; interacting daily with hospital staff; and being thankful for the charities and their supporters.
I experience the daily struggles facing patients and their families, but I’ve also seen the other side: the challenges that researchers, healthcare and educational professionals face when working with people and families of people with chronic illnesses and special educational needs.
I am an accidental academic. At the first multidisciplinary review meeting at my daughter’s school, one attendee suggested that I share my knowledge of being both an SEN teacher and parent by becoming a lecturer. The idea resonated with me, and a few weeks later I had successfully applied for a lecturing position at the University of East London.
As a senior lecturer in SEN, I am able to give my students a unique perspective of someone who not only is a professional academic and educationalist, but who lives and breathes the day-to-day issues that come with special needs and serious illnesses.
I am an active member of organisations and groups that aim to improve the provision and quality of life for children and young adults with both special needs and who have survived the initial diagnosis of cancer.
These groups comprise medical, healthcare and educational professionals as well as parents of SEN children. My participation keeps me at the centre of developments in the field and demonstrates to my students how you can become involved in influencing policies at a local, national and international level.
I want my students to do well and maximise their potential, but I also often wonder if any of them will work with my family. I draw on my personal knowledge of the SEN world to find speakers or help with student placements.
I model how to utilise social media to find and engage in current discussion and signpost them to organisations that can help to enhance not only their knowledge but their employability.
I describe what it is like to have an SEN child in your family, what approach might be taken and what support might be sought. I also encourage students to look at issues within their own diverse communities (for example attitudes to illness or access to services), to identify opportunities to make practical change.
As a researcher, my work is multidisciplinary. My insider perspective allows me to see, hear and experience daily the challenges that children with special needs, cancer survivors, their families and professional carers face. I use this along with theoretical frameworks to move the discussion forward and identify issues that may be overlooked or hidden to others.
I am but one academic in a sea of academics, yet there are few like me who can bring real-world experience to our work. Like other academics whose life events have inspired their careers, seeing the issues that people in my community face drives me to create change at a personal, local, national and international level within the fields of health, education and work. Academics with these life experiences are a unique and valuable commodity in the academic world. I am passionate about what I do because I have no choice not to be.
David Bara is senior lecturer in the Cass School of Education and Communities at the University of East London.