This was translated from finnish to english, the original post can be found here too. I hope this translation works well enough! Also please take note that I am speaking from perspective of a finnish born deaf CI-user.
Something significant happened when I was going into my 27th year. I finally realized that I had never been quite sure if my cochlear implant made my life any better. In general, it seemed to make my everyday life easier but the price was great. This train of thought began when my dear mother mentioned to her friend that I’ve always been happy with my cochlear implant. That’s when I realized I was basically lying to my family why whole life, ever since I got cochlear implants at the age of 3,5 years. At that moment I was going through a bad period of my depression so my mothers rather casual comment to her friend felt like salt smeared on a wound. I was the pioneer, the one who pulled the shortest stick, the one who ultimately exceeded all audiologists’ and doctors’ expectations, but paid for it greatly with mental health.
The cochlear implant is a medical, surgically implanted hearing aid and is so far the only medical device that can replace a sense. In Finland I was the second born-deaf child for whom this procedure was performed in 1997. I can’t even imagine the enormous uncertainty my parents experienced back then, the cochlear implant technology was still in its baby steps. I feel that I’ve been trying to protect my family (and myself as well) from the consequences of their decision. I wanted to let them believe it was the best decision. I’ve always been conscious of the well-intentioned reasoning as to why my parents decided to choose the very long path of cochlear implant. They wholeheartedly believed a cochlear implant was the best option for me and they wanted to give me a chance to decide between the hearing and deaf world myself, when I’d be an adult. During those times my family suffered greatly due to the harsh confrontation from the deaf community, since they were among the very first families to choose the cochlear implant in 1997. Given the situation, it’s easy to see afterwards why I unconsciously tried my best to adjust to the hearing world so that my family’s effort wouldn’t have been in vain. I realize now that the confrontation also made me subconsciously keep my distance from the deaf community, seeing how they treated my family. Ever since I gradually learnt to hear, I had this subconscious self-made expectation to solely survive with my cochlear implants. People were very excited to see how well I developed my hearing and things seemed to be going well for me.
I never gave a straightforward answer whenever I was asked whether the cochlear implant was a good thing or not. ”Eh, it has its pros and cons, it’s nice to listen to music.” I felt that after all those rehabilitations and trials my family went through with me, it would have been wrong to say anything negative about my cochlear implant. I also felt the burden of the cochlear implant’s cost, they’re expensive (even though it didn’t cost us anything since it is included in our healthcare) so I was thinking I shouldn’t let it be in vain by not using it. I still don’t have a clear opinion on cochlear implants. The cochlear implant has brought a certain kind of comfort and privilege to my life. In the way a cellphone or a TV does. It is indeed wonderful to have the ability to hear music (which can be enjoyed without hearing, by the way). But even without these you can go on with your life. Herein lies the glaring ethical problem about giving born-deaf children cochlear implants. I will unwrap this later in the text.
I spent 2 years of pre-school in Helsinki school for the deaf but was integrated into a regular school at the age of 7. My parents wanted to ensure that I would integrate with ease into my environment, the hearing world. Before the cochlear implant surgery, it had been very uncertain whether I would ever catch up with other kids regarding my hearing level, since the cochlear implant was still a very new thing in Finland. The doctors’ prediction back then was that I might be able to hear some sounds from my environment someday. There was no guarantee that an oral language would develop. However, when I gradually started speaking finnish and my hearing developed at a good pace, integration into the mainstream school was perceived as a good idea because there was a desire to further strengthen my development with hearing. This trail of thought feels very contradicting these days, now that we actually know better. At that time, without the experience they weren’t able to look at the big picture. My hearing ability grew stronger rather steadily and I lived in an environment that was already filled with majority of hearing people. I’ve been wondering why transferring a deaf CI-user child to the mainstream school felt so necessary at the time. In hindsight it’s easy to say this was rather unwise choice that had big consequences on my case especially, but let’s not forget I was around 7 years old at the time and wasn’t speaking perfect finnish at the time yet.
In 2006 (aged 13) when I was in middle school, having fun jumping on a trampoline, my inner part of the cochlear implant went mute abrubtly. Bad luck. It was time for an unfortunate reoperation, to change the inner part to a new working one. After this operation, I remember how depression started gradually creeping into my brain. I began isolating myself, subconsciously protecting myself by shutting off socializing aspects from my life. Afterwards I realized how I’ve always thought I’m just an introvert by nature and thinking I would not have to force myself to socialize. I had access to sign language at the school for the deaf only, so this short bond of mine with the deaf community was severed way too early.
I became a ghost, living on the borders of the hearing and deaf worlds, unable to be part of either worlds. I gained interest in drawing and immersed myself in the world of comics. They taught me a lot, my finnish was polished thanks to Donald Duck and I even learnt english solely by reading comics in english. As I mentioned earlier, I seriously thought I wasn’t a social person because being with people seemed to take a lot of energy from me. Although at home I was such a chatterbox and became pretty good at having a conversation, I still remained mostly as a quiet ”listener” outside of my house. Over the years at school, I started to fall behind on my studies and I became anxious over how competitive my classmates were. The school days for me was mainly about survival and compensating for things one day at a time. I didn’t understand why I couldn’t keep up with the others. All the energy went to trying to keep up with classes and quickly changing speech topics and I couldn’t bring myself to ask for help, I thought I had to survive on my cochlear implants only and blamed myself for not being a good student. However, looking at my school records I performed moderately well. Little does the records tell you about the struggles I went through…
In elementary school (was 7–12 yrs old) I had an assistant who knew sign language but going into the middle school as a teenager, my desire not to stand out from the people was great. I didn’t want to burden anyone with my disability. The school situation became unsustainable during my 9th year (16 yrs old). I had to switch from the mainstream school to another one in a different city that had a special class where I practically received private teaching since there weren’t many students in the special class. I wasn’t able to graduate with my few hearing friends from the mainstream school.
During my vocational school’s class trip, I caught a glimpse of how others actually perceive me as a person was when I had a rare chance for a face-to-face conversation with a classmate. I opened up about my accessibility problems to this classmate (my classmates were always aware of my deafness) and she stated that the others assumed I wasn’t just as interested in tinkering with others. This assumption probably comes from the fact that I don’t usually hear or react when I’m being called behind my back. Others had assumed I was just a shy and antisocial person and left me alone. This pattern keeps happening wherever I go. When I can’t tell what’s happening, I don’t have the courage to participate. Maybe I can only blame myself for this. Why can’t I just demand myself to be understood and heard? However I was only a child, a teenager. I wanted to get by on life with my cochlear implants because I was actually proud of them. It is easier and less trouble to be just quiet and withdrawn instead of trying to demand that others would take my special needs into consideration in every situation.
All my life I’ve been wondering why the deaf community was so strongly opposed to the cochlear implants. I assumed they felt the cochlear implant took something from them. I just didn’t understand what exactly. The hatred felt very misplaced. Isn’t it every family’s own business whether a child gets an cochlear implant or not? Over the years I gradually realized the reason for protesting against cochlear implants. For a long time, I assumed that the hatred towards cochlear implants was due to the fact that since the older generation of deaf people who used sign language did not have access to cochlear implants, they did not want others to get it either. I eventually had to face my own internalized ableism. I realized that the quality of life of the deaf is not poor because of deafness in itself, but solely because of discrimination and ableism we face in this system and by other people.
A deaf child born into a hearing family is oftentimes not a pleasant surprise. These families are then, basically right at the birth bed, being offered an easier life (from the hearing’s perpective!) for the family and the deaf child, so the cochlear implant is brought up before parents even have any knowledge of sign language and deaf culture. When promises of this easier life are being given to families in the form of cochlear implants, I can’t help but feel anxious about wondering whether there is this unfortunate phenomenon called ableism hiding behind that promise?
Discrimination against people with disabilities, shortly known as ableism, manifests itself in the form of a degrading or hostile attitude towards people with disabilities, violence, or a lack of accessibility in the operating environment. Children with cochlear implants have been given more privileged position compared to deaf children who don’t have cochlear implants. A cochlear implant is seemingly an easier thing to adapt to compared to having a deaf child and their family having to fight the ableism that deaf people without cochlear implants face throughout their lives. Cochlear implant users definitely experience discrimination as well, but with cochlear implants our everyday lives are so much easier. We don’t have to think about accessibility as much as the deaf who communicate solely with sign language.
With the increasing percent of born-deaf children who received cochlear implants, there are going to be less people advocating for deaf rights and raising awareness for the inaccessibility and ableism the deaf experience. With cochlear implants families can make their children meet the parents’ expectations and better mold them into the society’s standards of how an abled person should be. Whether this is good or bad, I have been reflecting on this topic from the perspective of a cochlear implant user for so long and still, I’m not sure. I’ve been carefully circling around this thought that almost feels like a taboo, that as an invention cochlear implant is not actually free from ethic problems or ableism, even. As a technology the cochlear implant has advanced a lot since the first ones and these days in Finland the success rate for cochlear implants is very high.
In some ways cochlear implant is very much like the signing gloves that people keep re-inventing every year without asking us deaf if we even need them. Signing gloves translates only the signs for the hearing people, not speech for the deaf. Cochlear implants can also be thought of this way; it was invented for the sake of the hearing people, looking only at the ”missing” part of ourselves thinking it is a problem, without asking us deaf if we can actually live without hearing and what the society could do to help achieve the accessibility we need. The cochlear implant is often compared to, for example, a leg prosthesis, but these two aren’t comparable at all, not even at the level of thought. A cochlear implant is surgically implanted and requires a rehabilitation that usually takes a lot of time and effort, depending on the age of the child. These aren’t the only reasons as to not to compare these two. It is a serious misconception to call a cochlear implant simply a prothesis, you can probably understand the reason by the end of this text. Please don’t take this wrong, I am not against cochlear implants. This invention can be such a blessing for the hearing people who lose their hearing later part in life, because they know what it’s like to hear and it definitely is life changing to lose something that was once part of yourself. But for me, my cochlear implant is also a curse. It hides my disability and gives me a privilege which ironically is causing me more problems, especially on a mental health level.
Sign language is my first language, and I am grateful for it. It gave me better opportunities right from the start of my life in terms of my linguistic development, as my hearing journey only started when I was 4 years old. The surgery took place when I was 3.5 years old, but after activating the implant, it still took about 3 months before I agreed to use an external processor on a regular basis (I wasn’t the easiest kid to please). My father was never able to learn sign language properly despite the hard work and my mother learned the language to the extent that simple communication with me was possible. This was probably one of the biggest reasons why my parents decided to give me a cochlear implant: so that I would have a common language with my parents and relatives, and I would be involved, above all, in the community where I was born.
We deaf people who use sign language can understand the mainstream language, but the majority of the population does not understand our sign language. The importance of sign language is so underestimated that sign language is not recommended to be used during a cochlear implant rehabilitation. This is just plain old oralism. I’ll be diving into this oralism-topic later in this text. I’m strongly questioning this well-established practice in the rehabilitation, as I have still not found any convincing data to support such an arrangement, only research showing the opposite. For me and many others it was clear that sign language was hugely beneficial during rehabilitation, even though I began my rehabilitation much later than what would be recommended in this day, at the age of 4. My linguistic and mental development would otherwise have lagged behind significantly without any language. The cochlear implant does not turn a deaf into a hearing person. From this fact alone, it is very apparent that sign language should never be denied from the deaf, despite having cochlear implants. Today, I am outraged every time I read or hear about how difficult it is for cochlear implant families and the deaf to have access to sign language. Not only this is an alarming problem in Finland, the situation is even worse overseas.
I’ve talked about ableism, but we need to talk about this another form of ableism that particularly affects the deaf, which is oralism. It is the education of deaf students through oral language by using lip reading, speech, and mimicking the mouth shapes and breathing patterns of speech. The underlying idea of oralism is that thought and mental development can take place only through spoken language, thus, as a result the use of sign language is forbidden. I’ve witnessed plenty of oralism even during my lifetime. I have deliberated a lot on whether the cochlear implant as an invention is an extension of oralism in the form of impressive technology. I find it frustrating how the hearing people and professionals keep reflecting their own hearing experiences on a deaf person. Too often, I’ve been told by a hearing person rather lightly that they would kill themselves if they wouldn’t be able to hear. But here’s the thing: the born-deaf have no hearing experience at all. You can’t miss what you don’t know.
It’s difficult for the hearing to understand that a deaf can have a happy, easy and normal life without the ability to hear. Now we get to the most painful thing I’ve realized about my situation: I have been given an awareness of the hearing world, but I can never be hearing enough to survive on my cochlear implant alone. As I mentioned in the beginning, I thought for a long time that I was an introvert and socially clumsy, but it wasn’t until a couple of years ago that I realized that I was actually very social person. I love having conversations with different people. I wish I never figured that out. Now that I’m aware that I actually have much greater social needs I am seeing a physical barrier in front of me and the ideal me. I’m not hearing enough. This realization caused such a tremendous mental crisis, which I’m still dealing with. How can I meet my social needs when I can’t hear well enough, but I am not a part of the signing world where I could understand everyone with sign language?
Every single day I face situations where I find myself as an outsider. I’ll give a few examples. I’m at my best when I’m conversating with one or two person in a calm, quiet environment. Lunchtimes or coffee breaks at a workplace/school/etc. are usually great chances for people to get to know each other. But for me they’re not so ideal. People generally do remember to talk to me in a understandable manner, but they switch to their normal speech manners right when they start talking to a co-worker sitting next to me, even if we we’re talking about the same topic. It already takes me a little longer to register what I hear, so during that time the topic of conversation has changed or someone else has the turn to speak. I have to redo the hearing process once again, leaving no time for me to think about what to say. It’s a vicious cycle. I’m forced to be in the role of a listener, even if I have a lot to say. I’m always in awe of how my partner, who is working in the same workplace as me, knows so much about our co-workers, despite never participating in discussions. But hearing as an ability is often taken for granted; just by listening you can learn so much about other people, even when they’re just complaining about something. It’s hurts everytime when I ask someone to repeat what someone else said and they would just say that it’s not anything important. Group chats are challenging for me.
I do have the rights for an interpreter paid by Kela (the Social Insurance Institution of Finland, is a government agency that provides basic economic security for everyone living in Finland), but I find interpreting situations awkward because sign language is not my ”emotional language” (could not find proper translation for ”tunnekieli”) and whenever I have had experience with an interpreter, I found that a simultaneous flood of auditory and visual information can get very confusing fast. Interpretation in a form of text is also impractical in my current situation. Then why don’t I just throw my cochlear implant away if it’s this hard to be a “hearing” deaf? I have also been asked this a couple of times. My parents thought that with a cochlear implant, I would have the opportunity to choose as an adult whether I would like to be deaf or hearing. However, I feel like I still haven’t had either chance. In my situation, giving up my cochlear implant would be almost the same as giving up eyeglasses as a near-sighted person without additional support. I feel lost without them. I grew up in a world of sounds, the silence has never felt comfortable or safe although I do get a good sleep at night when I put my cochlear implant away and resort to an alarm system designed for the hard of hearing and deaf. There’s always this pressure to remember to charge my batteries for the cochlear implant, because I get very anxious if the batteries go out during work. I have no other means to survive as a deaf than to fully rely on my cochlear implant. The deaf without cochlear implants have learned from the beginning to live with the deafness and they also have better cope mechanisms for everyday life, but I have not acquired those as a cochlear implant-user. I rely too much on my cochlear implant.
I recently wrote a text for LapCI ry’s blog (Finnish CI association for CI-families, their aim is to support children with cochlear implants and their families throughout Finland), where I stated that I am not worried about the situation of younger CI-generations anymore. They have a much better start to hearing life than I have ever had and from my experience I’ve seen they hear significantly better than me, they can even chat with a driver from the backseat without trouble (I can’t really chat in cars due to the engine noise). Many of them clearly identify more as hearing than as deaf. I’m glad to see that there’s now a strong community of young cochlear implant users in addition to the hearing and deaf communities. Cochlear implant has clearly succeeded as an invention these days, since the cochlear implant surgery is aimed to be done as early as possible and the overall success levels are high in Finland.
Still, I am worried about the side-effects that cochlear implants becoming more common causes to the deaf signing community on a societal level. The side-effects of cochlear implants being generalized are already quite visible. We are deaf and always will be, cochlear implants does not fix that. The sign language community is shrinking and people with no cochlear implant or deaf experience or awareness are constantly assuming that we are not deaf enough to earn even an access to sign language if we want or need to. This is a big problem, since this misconception affects policymaking directly. Cochlear implants are slowly eating away deaf rights and accessibility. The more cochlear implants there will be, the less demand there will be for deaf services and accessibility. This doesn’t bode well, knowing the capitalist system we live in. People and especially parents are trying to shy away from the fact that cochlear implant users are still deaf. I’m worried about the fact that the signing deaf community will be paying a great prize for the cochlear implant’s growing popularity.
I’m not the only one in Finland who has been greatly upset by the sharp decline in the number of schools for the deaf as cochlear implants have become more common. The schools for the deaf were actually the only ones that were able to help deaf children and take their special needs into account on every level. Mainstream schools generally aren’t very good at taking children’s special needs into consideration. Integration is the word of modern times but the levels of teaching, especially in special education, vary enormously between different schools. There is still a lot of work to be done to raise awareness and understanding of deafness and cochlear implants throughout Finland (and globally as well). Integration into a mainstream school without sufficient general knowledge is a big risk factor for the future of a deaf child.
As long as the CI-children and teenagers aren’t able to reach normal levels of hearing or there is no connection to the deaf community, the risk of isolation and mental health issues are significantly higher. The cochlear implant experiences of every CI-user are individual and that is why it’s so important to give them a solid starting point in life, be it in the world of the deaf, hearing or CI. This is done by providing barrier-free access to sign language, providing objective and comprehensive information on deaf culture, sign language, the benefits and risks of cochlear implants, and providing peer support. It is important to realize that even today, oralism almost invariably comes into the picture as soon as a child is diagnosed with a hearing difficulty or deafness. It is important to acquaint hearing professionals in a variety of ways, as there is a already a lot of technical expertise but for example, in the field of psychology there may not yet be enough research information due to the short history of the cochlear implant.
I feel that the discussions currently taking place around CI-children and young people are pretty one-sided (in Finland at least). Positive experiences take a lot of space in the public view. Negative experiences regarding cochlear implants are far less often highlighted or shared, although it is important to share those as well since we’ve noticed that the CI-families who aren’t doing well with the rehabilitation are more likely to isolate themselves from peer support (due to the fear of being judged by succesful CI-families, maybe?). This, of course can at worst lead to families getting burnout when left alone and the child will be not receiving enough support for their linguistic and hearing development. A CI-child may be on fairly weak ice if they live and communicate only with the help of cochlear implants, so it’s important if we could be able to support families with sign language in the future. I think it’d be ideal if the three worlds were to be connected so that the child develops a strong CI-identity with good sign language skills.
Last words: deafness is not something fixable and we have to accept that. It’s only the ableism that makes our lives hard. What needs fixing is our ableist social system and people’s prejudices towards the disabled. A deaf child with or without CI’s is not responsible for discrimination against people with disabilities or a reduction in sign language services but the majority, hearing adults, have a responsibility to shape the general attitude to a more accessible direction and to ensure the deaf community won’t be paying a great prize for the generalization of the cochlear implant. We have to see the big picture so that we can build a more accessible society for us deaf and hard of hearing.
Why did I write this text? As you’ve read you probably can agree with me when I say that I am unfortunately an example of what happens when a deaf cochlear implant user’s needs aren’t met. This text was written to warn parents and medical experts on things that cannot be overlooked on a child with a cochlear implant or two. My own story is not over yet and there is still hope for me. There are still plenty of blank pages. I hope that in the future I will learn the ways to to make myself understood and heard.
I hope I won’t be left alone, unheard.
