Living the reality of paediatric deafness, one can’t help feeling the surmounting expectation to fit into a predefined box. There are all sorts of academic articles out there defining what it means to be “little d deaf”, “big D Deaf”, “hard of hearing”, “functionally hard of hearing”, “oral” etc. There’s a certain expectation assigned by others if your child uses sign language, and very clear expectations pinned on you as a parent if your child has a cochlear implant. Whatever choice you’ve opted for, someone, somewhere is expecting a certain something from you and your child.
The problem with the field of child deafness is that on polar ends of the spectrum of choice and outcomes, sits groups of people who believe very strongly in a particular view of deafness. On one side parents are encouraged to only talk to their deaf child ensuring optimal amplification access to spoken language. The idea is to overcome the disability of not being able to hear with learning to listen and learning to speak so that the deaf child slots right into the hearing world. At a glance, I think I’ve seen many people assume this to make sense and be a simple set of choices and expectations. It’s often NOT that simple. The other group of believers holding their own on the extreme opposite end of the spectrum are those who argue that Deafness is cultural entity with its own unique language and way of being, a minority group that shouldn’t be altered with surgical interventions such as cochlear implants. These extremes in opinions are as old as the hills it seems, yet they continue to bring much strain and confusion and even conflict to those desperately trying to navigate their unique journeys. It certainly has to ours. It seems to me that either extreme, completely loses sight of uniqueness and diversity and instead nurtures negative emotions such as guilt and inadequacy in the hearts of well-meaning parents. A confused, overwhelmed parent cannot navigate carefully.
As a mom who has and will give up anything to see her kids have opportunities to be the best versions of themselves, you basically always feel like you can’t win. At any given point in time, you’re failing in the eyes of others and often quite blatantly being told so. I’ve been told twice before that my kids might end up hating me when they’re adults…for opposite reasons. Great! Once was, “If your kids grow up and realize they could have received implants and lead ‘normal’ lives, and you haven’t implanted them, they’ll sue you.” Another time the threat of being hated was linked to depriving them of their ‘God-given right’ to belong to a minority Deaf culture group, insinuating that implanting them was in direct opposition to this. Feeling rather overwhelmed by what I had to lose, dare I make one wrong decision, I took a step back and contemplated what was actually real. If my kids know that they are loved and accepted and celebrated for the unique precious people they were created it be, I find it hard believe that they will hate me. That’s when I started realizing that we actually don’t have to fit anyone’s box. The expectations will always be there though, but I can choose how much I let them bother me. The three most important people on our journey are our three daughters, and it’s actually only their opinions that need to matter.
So when my deaf child thanks me for implanting her because she loves hearing music, hers is the only voice I’m choosing to hear. When her identical twin sister comments later that day that she’s so glad we can all sign, it’s her opinion that drives my decisions. And when the littlest of the three contemplatively says to me, “Mom, you know deaf people know more about people than hearing people? Deaf people know about deafness and about hearing people but hearing people only know about hearing people.” I’m gob-smacked by the wisdom of this six-year-old and can’t help wondering if this field has been made unnecessarily complicated. Surely it’s a matter of each to their own? Live and let live? And here the “each” is referring to the child and not actually the parent…and certainly not the professional. Yep that’s the tough part. When our kids are little, the parent has to start with a set of preferred choices, often guided by professionals, but it doesn’t always mean that those choices best suit the child. The child in turn starts “showing” the parents what works or doesn’t work…an endless game of trial and error. And a parent that follows that child to the best of their ability within their means…that’s the parent who will see a successful well rounded child. Researches declares over and over again that the committed parent is the key to this journey.
The problem is that the world still expects kids to fit in prescribed boxes. In South Africa the education opportunities for a deaf child are a perfect example of this. Deaf Education is not offering an equal education no matter what anybody says, it’s not and it’s not rocket science to reach that conclusion. Worst part is, sign language gets a bad rep for this, when the problem is not about the primary language of tuition. If it were we’d see German medium schools and other language minority medium schools also failing as a system and we don’t. It’s the system (inclusive of late identification and late or no intervention) and support and lack of decent literacy tuition that is failing our kids trapped in deaf education. But no one else is meeting the needs for the bilingual deaf child either. NO ONE. There is no place in this country where the education would be considered equal and the literacy instruction of good quality which even allows sign language on the premises. NOT ONE. That’s because they’ve blamed sign language for the failings of the Deaf Education system. We don’t fit anywhere. My kids do best with visual support,but we certainly don’t want them deprived of quality English instruction and a firm literacy foundation as this would mean that they don’t have the same educational opportunities as others. So we don’t fit in either box (along with a whole lot of kids who have been forced into those boxes), what then?
The thing that amazes me is the evident loss of sight of the goal. Surely the goal is happy, healthy deaf kids living their best lives? Best lives including aspects like knowing they are loved, feeling accepted, knowing their lives have purpose, being enabled to dream, having good friends, being kept safe, growing a love of reading and learning and self-discovery of the world, exploring new things, having good self-esteem, having deep loving relationships with their families – surely that’s everyone’s goal for a deaf child? … everyone’s dream? Surely? Because from where I’m sitting it seems to me that many entities and people have taken their eyes off this bigger picture dream and settled for much smaller one dimensional dreams, dreams that look like, “having deaf children talk,” and “that a Deaf child proudly knows their Deaf heritage.” Seriously? Seriously! I see beggars every day at the traffic lights – they can ALL talk. I know of people who haven’t lived their best lives yet have a strong sense of their cultural identities…surely the key to unlocking the futures for deaf children should be as complex and as careful as unlocking the potential of any child? Is “good enough” what we’re settling for? Only partial aspects of a big wonderfully exciting picture is now the goal because the linear spectrum of opinion and belief systems cannot be laid down for a selfless circular system of support and shared expertise? Unless the politics can be put to rest and pouting opinions silenced, there’s one group of people who will continue to lose out…continue to have to settle for second and third best…a smidgen of what everyone else gets to experience and explore…and that’s our deaf children.
We have what we need. We have the wealth of knowledge and experience by d/Deaf and hearing professionals alike. We have incredible technology that can support any choice. We have money in this field – there is a lot of it lining the pockets of many! We have the stories of many a generation of deaf and hard of hearing people who we can learn from. And most importantly, we have the kids. 17 of them being born every day in South Africa alone, according to the research, 17 kids who want to show us what would work best for their unique needs and personalities. 17 kids who if identified and intervened early, have the potential to contribute massively to this world’s economy. They need their parents to embrace and accept this journey first. Being trapped running up and down the choice spectrum terrified to make one wrong choice, certainly doesn’t facilitate that. They need parents and professionals asking them to lead them in the direction of choice options that best fit them, without being scared of any of the choices themselves. They need systems willing to listen, willing to include, willing to serve. They need professionals, willing to get over their own predefined ways of how deaf kids should look and sound and be…and instead watch and listen and give. They need you to care, you to see, you to be willing to speak for truth and hope and purpose. They need all of us to say “good enough” is never “good enough”…each one of us, in our unique way is meant to THRIVE.