The Rebuttal

This article has been submitted by a Parent of a Deaf Child. I am sure it will resonate with many parents who have Deaf children or children with disabilities. It reminds us an again, that Medical Models have limits, can traumatise and often have one fundamental thing missing – Lived Experience. I thank the parent for submitting this powerful piece.

As we cradle that tiny infant in our embrace, an unspoken commitment forms within us — a promise to love, nurture, and safeguard. Yet, the depth of these words unveils itself only when we realise that the journey ahead for this small bundle, nestled in our arms, will be one neither of us could have anticipated.

The truth unfolds in a surreal manner. You’re told that the apparently perfect little bundle in your embrace is fated for a journey marked by appointments, diagnoses, tests, and therapy. As a newfound parent, you’re entrusted with directing and advocating within this uncharted territory, ensuring your child not only weathers the challenges of their world but also flourishes in the face of them.

The precious opportunities for genuine connection and bonding with our child are overshadowed by the belief that something is amiss, compelling us to embark on a frantic quest for restoration. Instead of joyfully sharing our baby’s introduction to the world with friends, we find ourselves thrust into an unfamiliar realm of medical protocols, reshaping our child’s journey along a path we never envisioned.

It’s not so much the initial shock of diagnosis that weighs heavily, but rather the weight of words laden with failure and despair that are cast upon us. These words trickle over us and seep into every pore. We find ourselves in a moment of profound change, where the trajectory of our lives has taken an unexpected turn. Our precious child, just beginning to explore the world, has encountered what seems like a stumble in their journey. A perceived failure in their very first test of life.

As new parents navigating the uncharted waters of parenthood, we are confronted with the idea that our connection with our baby might require additional support. Instead of being equipped with the immediate language skills to connect, we are ushered into a system that seeks to identify the most fitting technological interventions. This situation can undoubtedly feel overwhelming as we grapple with the complexity of options and decisions that lie ahead.

We find ourselves constantly tested, scrutinizing our child in the hopes of glimpsing what is deemed acceptable. In this medical realm, we inadvertently lose touch with our own selves and the once-familiar pillars of support and community. The pursuit of “fixing” our child and immersing ourselves in this new realm promises all the solutions. However, this mindset perpetuates isolation and fosters a perception that your immediate community lacks the tools to assist both you and your child.

New parents experience the loss of their own identity and support network and also the absence of a community that could illuminate the path ahead. Instead, families are compelled to view the professionals entering their lives as their new support system. They grant these professionals the authority to become decision-makers and entrust them with the role of guiding the way. This transition can often be unwieldy and inadvertently steer families deeper into the framework of a therapeutic model.

The inherent flaw in this system lies in the current model’s failure to recognise the immense worth of linking new parents with individuals who possess firsthand experience. Whether these are families who have trod a similar path or individuals with lived experience, the assumption prevails that such connections might overwhelm and prove distressing for new parents. 

Individuals who possess firsthand experience should be at the forefront, working alongside families to navigate the intricate web of information and affording parents the room to process and bond with their child. The anxiety stemming from manoeuvring through an unfamiliar world can be overwhelming. Having a guiding presence of a person that has lived it, in that moment would offer the chance to finally take a deep breath.

Parents require an environment that nurtures, empowers, and supports them. They should be allowed to naturally connect with their child, fostering a genuine understanding. It’s crucial for them to feel that their opinions are valued and that the individuals around them are both knowledgeable and encouraging. 

Who could be more fitting to offer this support than those who inherently comprehend the intricacies of that very path?

Unfortunately, many families are deprived of the opportunity to engage in with this wealth of lived experience. Instead, they are thrust into a demanding realm where they must become skilled advocates and fight to have their voices heard. Despite enduring countless challenges, their voices often struggle to break free from the confines of rigid dogma and a narrow interpretation of research. Parents are expected to conform.

Families often find themselves isolated on this journey, convinced that their struggles are uniquely their own. They bear the weight of feeling that their concerns are unjustified, and the expectations imposed upon them are merely the bare minimum they owe to their child. Any deviations from the prescribed path are perceived as neglectful, casting doubt on their child’s chances of success. This relentless pursuit demands that you be constantly at your child’s side, turning every moment into an opportunity to develop speech and hearing. Yet, this approach has a downside – it steers you away from the chance to naturally cultivate language skills and remain connected within your community.

Parents who do not conform to this medical norm might be labelled as troublemakers or dismissed as mentally unbalanced. Sometimes even leading to suggestions that they seek mental health assistance to address their anxieties. Consequently, rather than fostering understanding and attentive listening, these reactions can raise barriers that do not serve the best interests of the child or the cohesion of the family unit. In an environment where constant judgment prevails, how can trust be fostered? How can a warm and loving home be cultivated when one is ensnared in a web of fear, guilt, and grief?

Reflecting on our journey thus far, I can now confidently affirm that the precious baby placed in my arms was utterly perfect and never failed any test in life. The challenges that made our journey arduous stemmed from the reality that our child was born into an imperfect world and subjected to a flawed medical model of disability that shaped our path. This was not a failure on our baby’s part, but rather a shortcoming of a new mother navigating a system ill-equipped to provide the necessary support.

The sources of stress in our journey didn’t arise from my child’s hearing loss. Rather it arose from the constant need for advocacy. From the constant navigating uncharted terrain. Tellingly it arises from a system that exclusively measures success by a child’s hearing and speaking abilities. This often overlooks the child’s happiness, self-worth, and identity. And let’s not forget their comfort in this equation; it was often left out. This system itself is deeply flawed.

The strides my child has made in speech and hearing, thanks to the benefits of a cochlear implant, stand as a testament to the incredible impact of advanced technology, something for which we are deeply thankful. However, even with access to cutting-edge solutions, my child’s deafness remains a significant part of their reality. Each day, they confront challenges while navigating a predominantly hearing world. A world that often overlooks the child’s specific needs.

Despite undergoing therapy and having access to sound, my child doesn’t simply fit into the category of “hearing.” Fundamentally, my child identifies as Deaf. Their authentic essence is intricately woven into the Deaf community, where they discover the sense of belonging they’ve longed for. It’s a space where they aren’t defined by their disability but can wholly embrace their true selves without reservations.

When I envision a brighter and more inclusive future for our deaf children, I picture a scene where a baby is placed in a mother’s arms. She’s informed that her child is deaf. The doctor gazes at her and says, 

“Congratulations on your beautiful baby. Your baby is deaf, but there’s no need to worry. Your child is destined for a remarkable life, brimming with limitless possibilities. They’ll journey through life with your unwavering support and the love of your family, embraced by a vibrant community of people who have travelled a similar path, ready to stand by you every step of the way.”

The mother, as she looks into the doctor’s eyes, understands this, for she can see that he too has walked this very road