I participate in a couple online FaceBook groups for cochlear implant recipients like myself, or parents of implanted children. In one of them, a member who was recently activated, commented that some of their friends has been testing the new “hearing”. They were still acclimating and adjusting, and yet these friends were trying to see what they heard. Talking in noise, mumbling, not looking at them, and so on. Apparently that seems to happen to a lot of new recipients as there was a flurry of responses all agreeing it was one of the single biggest complaints they had about their friends and family.
For me, in the past, I was asked to show off lip reading skills to my teen friends, which I did occasionally. Still, it does not mean that I was comfortable with it, not only because I could easily get something wrong, and sometimes did, but that it didn’t seem to educate just how hard it is to lipread without sound. They didn’t get the point that I still needed to hear as well. Since my activation, I honestly have not encountered this annoying and rude performance request yet, and hopefully I won’t. I’m grateful that the friends and family I have are considerate, and genuinely want to know how things are going, and ASK me, rather than test me.
Others are not so fortunate, for example; one poster commented that she would point blank throw it back at them, basically retorting something along the lines of :
“It makes me sad that you cannot share in the special hearing moments I have been having lately. It kind of reminds me of how much further I still have to go, and how much more work is ahead of me. I’m sorry you cannot be happy for me” (paraphrased)
This seems to usually have a powerful impact on the person, and they usually ended up apologizing to her. However, there are many who just don’t get that we are not sideshow performers, and shouldn’t be treated as such. To so do, means we are seen as freaks, and not the human beings we are, who took a chance to gain entry into the world of hearing.
Another poster said she ignores the person who continues to test her, after she explains that it is still a work in progress. She also said that when asked why she was ignoring that person, her response was that:
“It is hard enough being Deaf, without people like you nagging me on what I can hear or not hear, while I still struggle so much with my hearing. It is no different than the way you struggle with your body image issues and insecurities.” (Paraphrased)
In her case it was usually friends and family that wanted to see for themselves the cochlear implant truly was working. They didn’t mean to offend or hurt her feelings, but it was certainly an annoying thing to deal with.
A member of the group pointed out that we live in an instant world, where we want instant gratification and progress. She is quite right in that, as many think the cochlear implant is an instant fix or cure of the Deafness. They don’t understand that it doesn’t work the same way a hearing aid does, which simply amplifies sound. What people don’t realize, and I’ve explained this myself to family and friends, and through some of my posts, that there is a lot of brain training happening. We are training our brain to recognize the sounds we hear, and discriminate speech sounds. Hearing people don’t realize how much work it is, and in fact, it’s much more work than it once was with the hearing aid in my opinion.
When family and friends test our new hearing, or ask us to “perform” for them, it is very rude, inconsiderate and even hurtful. Why should we perform as if we are freaks in a Sideshow Circus? Are we not in a modern age? Should we be tattooed and pierced to the nines too? Are we expected to stand on a stage and delight others for their entertainment? If we are, then we should earn a fee for that and sell tickets so that we can fund our upgrades and accessories or replacements, because that’s very expensive for us.
I think not.
We prefer to be asked questions like: “how is it sounding?”,”what’s been the most special moment?”, “explain to me how it works”, or “what is auditory verbal therapy?”. We would rather explain things than show you, or at least have the choice to show you of our own free will. We need and want our friends and family to understand that it isn’t an overnight event, it takes time, work, patience, tears of joy and frustration and even sadness. We need support and encouragement, not being asked to perform like a little circus flea or a sword swallower. This is our journey, and adventure, and we are not here to entertain others unless we choose to.
So please, be considerate, and :
THINK before you test us,
THINK before you nag us,
THINK before saying something that we may take offence to.
RESPECT our feelings
RESPECT that we require patience and support
RESPECT that we still need you to help us as you did before, making sure the environment is at it’s optimum and we can lipread you and hear you before you speak.
We don’t want to be tested, we will be doing enough of that in the first few years as we tweak, and perfect the programming of our sound processors. As part of the process our audiologists do enough testing on us, thank you very much.
We are not Sideshow Performers.