When I was in high school I attended speech camp every year (nerd alert!). I was way into the forensics team in high school, participating in the acting events where I would compete, performing 8 minute pieces of different plays either by myself or with a partner. And camp was Mecca for nerds like me. It was held on a nearby university’s campus. Every year the campus also hosted a camp for the Deaf during the same week as speech camp. (Believe me, the irony of Deaf camp and speech camp running at the same time was not lost on me, even then.)
Every year I would watch the kids from Deaf camp in the cafeteria, the only time our paths would cross. They ate lunch, signing across the table, having whole conversations without a sound. It always brought up in me the question of whether I’d rather be deaf or blind. My answer was always deaf, being blind seemed to require so much assistance, there seemed to be many more limitations on the blind to my fifteen year old self. But as I watched these teens, I wondered if it wouldn’t be worse to be deaf. To not be able to communicate with the world at large seemed untenable, beyond limiting. I didn’t know any Deaf kids in my real life and so it seemed like if I was Deaf I’d be all alone on an island, isolated from the world around me.
At the AG Bell convention the protesters arrived early. On Thursday night I caught sight of them as we made our way back to the hotel. One woman, who I’d later realize was the leader of sorts, noticed Liam’s implant and started signing to me, asking if he signed. He doesn’t but I didn’t want to get into it with her so I played dumb, smiled serenely at her and steered Liam toward the hotel. My stomach felt queasy. The presence of the protestors stirred something in me I couldn’t identify, or wasn’t yet ready to wrestle with.
The protesters were a group from the Deaf (with a capital D) community. They were protesting what they believed to be AG Bell’s silencing of the Deaf community because, in their opinion, AG Bell doesn’t value ASL and instead encourages Listening and Spoken Language. Additionally, AG Bell promotes and encourages the use of hearing aids and cochlear implants, which some in the Deaf community object to as they feel it is trying to “fix” or “cure” deafness, a quality they don’t see as a disability so much as a difference in the human condition. There’s a LOT to unpack with all of this, much of which I’m not going to get into here and now. I’m still learning a lot with regard to this conflict and as a parent of a deaf child with a hearing aid and cochlear implant, it’s more personal than not.
All I can say is I went to bed that first night feeling uneasy. I wasn’t really angry with the protestors. But I didn’t feel right either. I looked at my sweet boy knowing he was little d deaf and wondering if that was going to be ok with him in fifteen years.
On Saturday afternoon as my friend Lyra and I sat by the pool watching Liam swim she filled me in on what the protestors had been doing down in front of the hotel. We’d been hearing rumblings about them from within the convention. Security was on guard, not that any of us really worried for our safety. The protestors had gotten a little more aggressive today though, arguing with families about their choice to implant their child.
As Lyra relayed one particular exchange she said, “I just feel so bad, some of these families have made an agonizingly difficult decision and these protestors are making them feel terrible about it.”
And with that statement my own feelings of unease came sharply into view. I turned to her and said, “You know, the protestors make me feel bad because it wasn’t an agonizingly difficult decision.” We never even really considered not using hearing aids and then an implant for Liam. It wasn’t an option for us to have him learn ASL and participate solely in the Deaf community. And seeing the protestors made me feel guilty for that. They made me wonder if we should have at least considered the other side, looked into it more.
The protesters made me feel, for a moment, insecure about our decision and the fact that it hadn’t really been a decision so much as the next logical step on our path.
And it wasn’t like I wasn’t empathetic to their arguments. The Deaf community gets smaller as technology gets better. Nowadays most deaf kids we know are completely outside of the Deaf community. We don’t know anyone who exclusively signs, and Liam wouldn’t be able to communicate with them if we did. I understand the fear that that instills, when it seems that all that you hold dear, the community that has given you everything looks as though it’s becoming obsolete. And I also know that for some cochlear implants are not an option; the structure of some people’s inner ears make it impossible to implant. As the Deaf community lesses it is these kids for whom I worry. Who will be their home if everyone else can hear (with assistance)? I may not agree with the protesters, but I can absolutely understand where they are coming from.
Which brought me to another feeling the protesters stirred up. I’m not used to being on the side of the protested against. Typically I tend to side with protesters, or I have no real understanding of a situation and take neither side. It was an uncomfortable feeling to be on the side of “power” (not that I really think AG Bell, and those who choose implants and hearing aids are on the “power” side of the scale-it's just that typically those protesting do so because they feel powerless). In this area of our life, if the Deaf community is the one feeling marginalized, we are certainly not on that side, and would actively fight for our right to continue down the path we have chosen.
In the end, that’s where I land. I would never in a million years tell a Deaf parent that their deaf child should be implanted and immersed in the hearing world. And so I’m not going to feel bad about our choice to bring Liam into our hearing community. I understand all the reasons people would be worried about CI’s and the risks that they may not work, but I’ve watched his progress for the past five years and I know we made the right choice. When I think back to those kids in the cafeteria at Deaf camp I know they were fine. They’d had their community, they were confident, self-assured and intelligent. Liam would have been fine if that had been him. But, all those years ago, my heart recognized the chasm between those kids at Deaf camp and my peers at speech camp. We lived in two separate worlds; their world was not better or worse than mine, and given the right tools (sign language or an interpreter) we could bridge the gap. But by and large the ins and outs of these two worlds remained separate.
For Liam the choice to participate solely in the Deaf community would have removed him from our community, from our friends and family, from the people we interact with daily. And as his mom, I wasn’t ok with that. Many years ago, before technology and organizations designed to help hearing parents learn ASL, many hearing parents of deaf children had no choice but to give up their kids, allowing them to be raised in boarding schools for the Deaf, or with other Deaf families. I cannot imagine that excruciatingly difficult decision and I am thankful to live in an age where I didn’t have to make it. I’m not trying to “fix” Liam but I am giving him access to the world I know and love; the same way a Deaf parent who exclusively uses ASL is doing for their child.
At the airport on the way home I struck up a conversation with two teachers of the Deaf who had attended AG Bell. They asked me what I thought, as a parent of a deaf child, of the protesters. I explained some of my thoughts without going into all of it. And when these two teachers shared their frustration on behalf of the parents of their students, when they started to make the protestors out to be the bad guys I was hesitant to join in. I truly can understand their perspective. AND I am truly confident in ours. And I suppose that is what peace with your decision feels like. I didn’t need to fight back, to defend our choices. But I also didn’t need to follow theirs. We’d made the right choice for our family, even if at the time it didn’t feel like a decision so much as the next right step, and I had no regrets about it.