THE BLOG

Grief for a Living Child: A Taboo That Needs to Be Broken

27/01/2015 13:31 GMT | Updated 29/03/2015 10:59 BST

'Is grief from a parent of a deaf or disabled child appropriate?' asks Andy Palmer in his Limping Chicken review of listen, even when your heart is crying, the TV and online documentary that I wrote and directed.

In answer to that question, I'd say yes. I have been a Deaf parent to a child with disabilities for five-and-a-half years, and it has confounded my notions of what grief is.

Prior to Isobel's birth, I understood that parental expectations were nature's way of ensuring a nurturing environment in which a child could thrive. Anything that deviated from that was bound to come as a shock, particularly if it was an event that the parent had not experienced before. My mistake was to think that my own formative years would enable me to adapt to such an event more quickly.

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I have been Deaf nearly all my life, growing up around both Deaf and disabled children. I have collaborated as an adult in a professional capacity with people with disabilities who retained full capabilities; even today, I engage with them regularly on social media and elsewhere. I am long familiar with people living with cerebral palsy, the impairment that Isobel was identified with at nearly a year old. It should be no surprise that upon her diagnosis, I was much closer to identifying disability as an irrefutable characteristic of the human condition, rather than an anomaly, than my mother was when I became deaf.

It was to my horror, then, that my grief appeared as something far more monstrous than the stoical acquiescence of loss I was expecting. First it descended on me with the weight of a darkening sky, encompassing me with a blackness so dense I could not see a tomorrow. Then it was a lake, dark as night, its liquidity at once resistant to my breathing attempts. Finally, it became a primal rage that flung hopes and dreams back in my face like insults.

It was the force of that grief, rather than the shock of Isobel's diagnosis, that I fought desperately to eject from myself. It took great strength to not let it blind me to the very beautiful little girl who had arrived with the potential to light up my life.

Only time with a trained Deaf counsellor who shared my views on disability could get me to first acknowledge the conflict raging within before I could move on. Any guilt I had, understandable though it would have been, would probably have stunted the motivation I needed to adapt positively to my new role.

Grief is proportional to what you know and understand about disability, rather than what you believe. I had never spoken to my colleagues with cerebral palsy in detail about how their impairment affected them on a day-to-day basis. I wasn't scared, exactly; I simply went with what they told me at face value out of respect. I was lucky that I already saw them as fellow humans and leaders.

I realized that what was wrong about parental grief for a deaf or disabled child was not that it existed, but how it was being addressed. My mother was never directly told by doctors that I was deaf. Instead, it was stipulated as if it was something too awful to mention before she was moved on, thus setting the tone. Given that counselling as we know it today was not widely available back then, my mother would not have had anywhere to process her grief properly.

She is not an isolated case. 90% of deaf people come from non-deaf families who have little to no experience of communicating with a deaf child. Dealing with unresolved parental grief is a key feature of their lives - a whole community of people affected through the generations by these, often deep-seated, family issues. Anyone born or pre-lingually deaf, like myself, will never understand it, unless they are themselves parent-carers - and even then, they are likely to differentiate from their parents in how they approach their grief.

That was my incentive for making listen, even when your heart is crying. I could not relate to many of the blogs, newspaper reports, and books written by fellow parent-carers; so inhibited were they by their own grief, and so incapable of thinking how the child might feel. Hindsight told me not to go down that route.

Instead I decided to open up without compromise. Recounting my experiences alone in one room with just two cameras for company while a film crew of seven milled around in the next room, as the film's director I became aware of a blurring of boundaries between public and private, professional and personal. Yet, even when I sensed the old monster stirring within, I persisted.

Of course I knew the risks. But the overwhelmingly positive response by both Deaf and non-deaf audiences since the documentary's first TV broadcast in January 2015 indicates that I have managed to turn my grief into a positive motivating factor. After all, if I was to re-connect with my own daughter, I had to first stare grief in the face.

I cannot vouchsafe that the monster has died yet. At five-and-a-half years of age, Isobel has many more challenges yet to come, so I cannot tell if or when it will rise again. But at least I can stand here, confident in the knowledge that so far, it has been the making of me.

listen, even when your heart is crying is live on the BSL Zone now, presented in BSL with some spoken parts.