Choosing to have cochlear implant is your decision

In this episode of the Hear Me Out! [CC] Podcast, I wanted to voice (or rant) the stories about how Deaf people, who are about to undergo surgery to have a cochlear implant, are apprehensive and nervous for 2 reasons.

The first is because it involves a surgery, which is a valid reason. The second is because of a potential backlash from the Deaf community, which is something that I struggle with.

Personally, I think it’s your decision to do whatever it is that helps you. But I’m also curious to hear more from different about their decisions to have a cochlear implant and also from those who are completely against it.

You can listen to the podcast below or scroll down to read the transcript:

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Transcript

This is the Hear Me Out![CC] podcast. A place to hear stories from the deaf and hard of hearing people, and from your host, Ahmed Khalifa.

The past few weeks, and even past few months, even more when I start to read about people’s journey and their lives and understanding their background and the Deafhood, their Deaf culture and their deafness. You learn more about what are their feelings, and how are they processing everything and the challenges and barriers.

A (very) brief backstory of a person’s journey to getting cochlear implant.

One thing that has been quite common over a number of different social media posts, is when a person who is profoundly or severely deaf has an opportunity to get a cochlear implant and in the end they decide to go for it, but almost every single time when they share that story, that they’re going to do that they are a bit apprehensive, for two reasons.

First reason

One, is because obviously there is a surgery involved, because at the end of the day it’s a surgically implanted device that you need to have in your head and it transmits the electronic impulses to your brain and make you hear certain things better.

Not a solution, it’s just there to support you, like I said many times. Hearing aids are not a solution, neither are cochlear implants, it’s just there to help provide better support. So, that’s number one, why they’re feeling apprehensive and nervous about it.

Second reason

The second reason is because it seems like they are nervous about the reaction from the Deaf community. I don’t want to be the kind of person who say, “You know what they’re wrong, or they shouldn’t do it that.” Whatever.

Is the negative reaction fair?

What I do want to say, I think it’s a bit of a shame that they feel like that. When that person who is getting the cochlear implant, the reason they are nervous because historically there is a bit of a stigma attached to having a cochlear implant.

Basically, certain people in the Deaf community think that it is an insult to the Deaf community, the culture and it’s really something that is proposed, and forced upon by hearing people and their way to exclude the Deaf community even more, and maybe push them out and drown them out and quieten them.

And the person who is getting that surgery is nervous about the reaction and whether her or she is part of that community any more. It’s a very tough thing to talk about, and also a very tough thing to provide a solution about, because there isn’t really a solution, or what I think you should do or not do.

The issue with gatekeeping and its negative impact

However, I do think it’s a shame that there does seem to be a lot of gatekeeping. And that’s something that I’ve heard a number of times from different Deaf people is that they are gatekeeping in the Deaf community, and that is a way for them to say that, “You know what? You’re not part of the Deaf community, because of maybe you’re not Deaf enough”, or “you have a cochlear implant”, or you are this, or you are that.

And even I had that, and yes I would say that I’m not really part of the Deaf community but even people said to me that I’m not deaf enough, for example. Which is a bit weird, really if you say that.

So, for this person who is nervous about it, I can understand it, and it got me a bit annoyed because I don’t want to get political, because there are other issues around about what you can and can’t do with your body.

But really that’s how I feel about it, I feel like it’s your body, and it’s your choice. If you think that’s going to help you, if you think that’s going to make your life easier, or better, and it’s not really going to directly affect in this case, that Deaf person, then it’s your decision. It’s going to help you, and that’s it really, that’s all we need to know.

And it’s a shame that this person, and a few others, a number of others actually. They feel really nervous about it, they feel very apprehensive about the reaction from the Deaf community.

And I always see it as, you know what, we’re all facing the same challenges, the same barrier. Of course, not everyone’s the same, I get that. But there is a general barrier that we’re all facing at the same time in the hearing world.

The implications of getting advice from the wrong people

But it’s your body and it’s your choice. Getting advice and opinion for me is fine, and I think you should encourage that, from different people, but at the same time you should be wary about who are you getting your advice and your opinions from. Because who you get it from can be good on one end, but it could be bad on the other end.

If you’re going to be asking a person who is hearing, about getting a cochlear implant, that person will have absolutely no knowledge about how you’re feeling or being Deaf, or the Deaf culture. That person doesn’t know anything about it.

Then you have to take their opinion with a pinch of salt, as they say. Just don’t really take it too seriously because they don’t truly know what you’re feeling, how you’re feeling, and what is it like.

Even getting it from another person who has a cochlear implant, that will actually be a better thing for you to do, to understand their experience, and their barriers with it, and their barriers without it.

Maybe they like it in the end. Maybe they decided to not do it in the end, but that’s their opinion, and I think getting their opinion makes sense. Family members, yeah, sometimes you think, especially if they’re hearing, if you think that you want to talk to them about it and they understand it. That’s good.

And I think in general most of them will understand because they have grown up with you, they understand you. But if they’re hearing they’re not going to understand the why, and only you can maybe explain the why. Only you can really feel why you want to do that.

Even doctors and audiologists, even they can get it wrong sometimes. Now, I know, again I’ve mentioned earlier about how certain people are criticising doctors for pushing any deaf person to go for, for example, “go for oral, go for speech. Don’t do sign language,” all that kind of stuff.

And I’ve mentioned about this, with Professor Donald Grushkin in a previous podcast. And he talked about how he was angry about, not angry, but he’s criticising about certain doctors pushing his patients to go for being hearing.

Because if you can hear certain things, it’s better to go for speech and oral language, rather than sign language. And in his case it was the wrong advice.

And you hear the same thing from doctors and audiologists. At the end of the day they’re the ones who’s going to perform the surgery and they’re the one who can give you advice, about how it works and all these things. You may hear similar stories from them.

But again, unless they have it themselves they’re not going to truly, truly understand what are you feeling deep down inside. So, get advice from them, but keep an open mind.

As well as when you get advice from different people, you can keep an open mind as well. And I think that applies to anything in life. I know I’m talking about cochlear implant in this situation, but it applies in anything. Depending on what you want to do in your life, if you’re going to get advice or an opinion from people, that is fine, but who you get it from is another story. Because at the end of the day, are you doing it for you?

Or are you doing it because someone said so? And I think a lot of people agree, that you should do it for yourself, not because of other people and make their life easier at whatever.

But it makes your life more difficult, I’m not sure if that’s the best situation. If you disagree with me, let me know. Comment in the show notes, and just let me know if I’m wrong.

Do it for you, not for them

But at the end of the day I feel really terrible about this person, and a few others who have been criticised, or pressured, either getting the cochlear implant or pressure from the community about, “You are betraying us.” Or, “You are doing us shame and you are doing a bad thing.”

I think that’s a terrible way of doing that, we should be supporting each other, we shouldn’t be attacking the person who wants to help others, or who wants to make a difference, who is also actually contributing, and making a difference to the Deaf community be raising awareness, and making it all inclusiveness and shouting about equality. All that kind of thing.

That person is doing that, so, it’s a shame that this community is trying to keep that person quiet in a way. We’re supposed to support each other, in this case I am a believer of, “It’s your body, it’s your choice.”

I know it’s getting a bit political, but I think it’s a bit different in terms of how you should see it, because this is something that I can kind of relate with in terms of you have certain barriers, you want to see what are your option, you want to overcome them.

And you think that this solution is going to help you with that, then that’s fine, if that is your solution and it’s going to help you, it’s going to make your life better, make you feel better. You feel healthier, you’re mentally better, then why is that a bad thing?

Again, let me know, if I’m wrong, let me know. I’m curious to open up discussion, that debate, with someone who maybe knows more than me, because I know I’m not the most knowledgeable person about cochlear implants and the Deaf community.

I admit that. I totally get that, but from speaking from the people who are in that community and from even just researching form speaking to experts, like I said, interviewing other people, and learning about it from the other podcasts that I’ve done. That’s how you learn. That’s how you get to learn more about their identity, their feelings and their experience.

Because you will probably know yourself from seeing and reading the other podcasts, everyone is different, everyone has their own journey. You can’t really label everyone under the same umbrella, if you like.

So, it’s a bit of a rant, I mean I could have gone on for longer, but I think the general idea is that if you choose to have a cochlear implant it’s your decision, and it’s nobody else’s decision. You should do it for yourself, and if you think it’s going to help you, great. You have my support. That’s good for you.

Otherwise, just make sure you look after yourself, and if you want to reach out, reach out. And just share your own story and your feelings in a comment, if you had that experience as well. I would love to hear from you. I would love to hear from you.

Even if it’s privately, you can reach out to me. I hope you enjoyed that episode, and I hope you have just put up with my rant. And I just think that it’s something that is important for me to share, and for other people to be aware of as well.

Let me know what you think, and also, I would really appreciate it if you just subscribed to the podcast and just engage with it more, and just share it with anybody who will find it useful.

Especially those who are going through the same scenario as well. Maybe they will appreciate that. Hopefully comfort from me, to offer you support and do what you want to do. Because if it’s going to help you, I’m there for you. Just share that with that person.

In the meantime, I will speak to you again, soon.

Take care!

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