The medical profession is not infallible. They make mistakes. They learn the wrong things. They prevaricate or outright lie. They fall to the pressures of the industry to steer patients one way or another based on the outcome being favorable to them. As unpleasant as it is to think of it, as inclined as we are to think it’s not the case, it is. And it has been proven so by many, who continue to be unheard. The hearing technology industry is rife with it, especially where Cochlear Implants are concerned.
Doctors do not have all the information, or the right information, and they don’t tell you everything. If you sit back and pay attention to the stories of both Deaf adults and other parents of Deaf kids who have been down this road, you’ll notice there’s an alarming number of stories. I’m one of them.
Doctors never told me there was a risk for brain damage, which I’ve since learned I am far from an exceptional case in that regard. Doctors never told me how expensive maintaining parts would be. Doctors never told me how little the chance of “success” in my terms would be – they were only focused on hearing, not what percentage of that hearing would be functional. Doctors never told me that people being shocked by their implants was a thing, let alone an alarmingly common one. But they knew.
The audism in the industry is so rampant, that the clinic that maintains my CIs has never had a TTY. They employ someone who has a CI from them to work at the front desk, someone who is 100% oral and pushes only this at all times to all parents. One time when in the waiting room, I was signing with my husband, and my previous AV therapist came out to say hi and asked me why I wasn’t using my voice. I said “because I’m an adult and I prefer sign language.” She, every staff within ear shot, and several parents in the waiting room looked horrified. When the 2nd implant failed, I mentioned that they weren’t worth it anymore and definitely weren’t worth the brain damage. “But you can hear!” as if that was the only thing that mattered. I was even told I should shave part of my knee-length (at the time) hair so the magnets would stick better. From my talks with others, this is apparently pretty common of CI clinics across the country.
Even more heartbreaking than all of this though, is the looks from the small children when they would see me signing and communicating effortlessly with my husband. It would start off as curiosity and they would stare. I’d often start signing more for their benefit. And eventually, if enough time passed… those curious looks turned to longing and sometimes even sadness. I saw little me in them. I looked at people signing the same way when I was their age. They know, as I knew then, that something is missing from them. My heart breaks so much for them – and it’s all because the parents believe what the doctors and therapists say.
This is why some of us Deaf are so vocal about tech. It’s not because we are negative or elitist. It’s not because we feel like we know better than parents how their children should be raised. It’s not because we have some sinister agenda. It’s because we’ve experienced firsthand that doctors can be and often are flat out wrong and even straight up dishonest. We know parents are having the wool pulled over their eyes, and we only want to remove that wool because of the innate need to protect our Deaf littles. So we fight back against the misinformation being spread by doctors.
Two more parts left.