I read this article a couple of days ago, and it got me to thinking and writing about what our journey with a Deaf child has been like. There is also some great advice in here about understanding the ‘capital D’ Deaf world and Deaf culture. Worth a read.
And then there was this article today, written by a deafened woman (a hearing person who loses their hearing). Interesting take on cochlear implants and the idea of wanting to be ‘fixed’
It’s been a journey for me to have settled on whether or not to use the capital ‘D’ in describing my child as being Deaf. You see, using the word Deaf as opposed to ‘deaf’ (small ‘d’) denotes her inclusion as a person who is part of the Deaf culture. But I wasn’t sure that describes who Kate is, or was going to be, and then I realized it wasn’t for me to decide, it was for her to decide – or to show us who she is.
The small ‘d’ / big ‘D’ description of being a deaf/Deaf person is complex, and as a hearing person I feel reluctant to try and describe it here and really do it justice. Big ‘D’ has to do with being culturally Deaf, born to Deaf parents and part of a very close Deaf community where aided hearing and use of your voice are not seen as something that are important to being part of the community (and sometimes discouraged). Big ‘D’ Deaf people could also be born to hearing parents but schooled in ASL, having attended Deaf school, and finding that their comfort lies more with the Deaf community than the hearing community.
Small ‘d’ deaf is using your voice, integrating into mainstream school, using hearing aids or cochlear implants and relying largely on your hearing to engage with the world. Often, small ‘d’ deaf people don’t identify with being deaf at all, and wouldn’t use the word ‘deaf’ in describing themselves. They are fully integrated into hearing culture.
And of course both of these, small ‘d’ and big ‘ D’ reside along a spectrum of choices, cultural priorities, language, interacting with the world, and decisions about aided hearing and use of voice.
Our Journey of Understanding
It wasn’t devastating for me when I found out Kate had moderate to profound hearing loss at 12 months old. I had suspected for some time and had been advocating for her to get hearing tested. It unfortunately took some convincing of her doctors. I didn’t realize the impact that being hard of hearing would have for her over the next few years. I thought with moderate to severe loss, with her cute little pink hearing aids, she would be able to hear us (‘normally’) and would learn to speak. I hadn’t had much exposure to persons who were hard of hearing or Deaf, only to my grandparents who wore hearing aids in old age (not the same). But over the next 6-12 months, I gradually came to understand that being hard of hearing was going to be a challenge for my child – and for us as a family. After her initial diagnosis, Kate continued to lose her hearing until at 20 months, she was diagnosed as profoundly deaf.
Deaf people don’t like to be described as having hearing loss, they don’t see it as a loss and prefer to be referred to as hard of hearing and/or Deaf. But you see, it is a loss in so many ways – and that doesn’t need to be construed as something negative in the long-term, but it is a loss. It was a sadness for us, and we did grieve that loss for our child. I don’t see this as a slight against my Deaf and hard of hearing friends, in fact I know some of them would agree. I do understand their need to carve out their identify and separate it from the word ‘loss’, so in that context, I think the word ‘loss’ has be to understood to have two different meanings. When you are describing a Deaf or hard of hearing person, you don’t describe them as having ‘hearing loss’, it is offensive to them and an inappropriate way to refer to who they are as a person. But the grief and sense of loss for the family is real and has to be appreciated.
When Kate’s profound deafness was confirmed, I started to move out of having my (incorrect) expectations that this journey wouldn’t be difficult. I knew then that Kate also had serious developmental delays, and an undiagnosed rare disease to contend with as well. I knew immediately that we needed to give her access to everything possible to aid her in communicating and interacting with her world. At that time, I remained unaware of the deep-seated philosophies and cultural identity of the Deaf community. As with most beliefs, it lies across a spectrum. There are Deaf people who believe CIs are parallel to eugenics or an act of ‘genocide’ against the Deaf community by the slow elimination of their community and language. They feel the medical community sees Deafness as a sickness to be cured and hearing parents as trying to turn their deaf children into ‘normal’ hearing children. They feel losing their culture, their language, and being seen as persons with a disability in need of medical intervention – they certainly do not see themselves this way and consider it highly offensive.
Other Deaf people are more moderate, and understanding that more than 90% of deaf and hard of hearing children are born into hearing families and communities. They understand that with infant hearing testing, we are identifying hearing loss at birth and with new medical technology we can facilitate the ability to support/regain this human sense. They understand the families desire to be able to communicate with their child and offer the best of both the hearing and Deaf world to their children. At a fundamental level, I believe that there are many in the Deaf community who understand that cochlear implants and other emerging technologies such as stem cell treatment and gene therapy (even more controversial) are here to stay. A huge choice is emerging for the Deaf community to embrace this community of deaf children and welcome them to the Deaf community. Families (like ours) want to use both our hands and voices. Not all deaf children will learn to speak, not all will have the option of CIs, and not all families will choose technology.
It is not an easy position to be put in – having a deaf or hard of hearing child. The choices are difficult and often influenced by others, as well as our own initial ignorance and biases. I feel fortunate that we kept out options open. Kate was not an easy cochlear implant candidate because there are risks associated with anesthetic for her. We had to very carefully weigh out all the considerations and scenarios for her. A very possible choice for us was to not risk the surgery for her and choose for her to be a Deaf person with no access to hearing. In the end, we felt that giving her access to hearing and all means of communication possible was her best option. I felt confident that we could support her auditory and verbal learning. I also felt confident that we could learn American Sign Language (ASL), and find support within the Deaf community.
Learning ASL has been a process. Like any language it takes time and commitment, and a lot of practice. In our family, I have taken the lead having studied for 3 years now at night school at our local community college. Others in my family and community haven’t been as interested, or aren’t around Kate as much, so it has come to educators and others in the Deaf community to provide that role modelling for Kate.
Support within the Deaf community has been more difficult. I had to advocate very hard to get a ‘Deaf education’ for Kate. There were many from the hearing community willing to support us; our hospital and our local public health infant hearing program, these were hearing people with skills in ASL, but the Deaf community was much more difficult to access. There was no mentorship from other families, other than to find online support groups of other hearing families with deaf children, and most of those were highly focussed on auditory and verbal. The Canadian Hearing Society had many resources to offer, if you were an adult, but they had nothing for children (and still don’t). The Deaf community was also a very difficult ‘resource’ to access. It took a lot of time to meet Deaf adults who were willing to work with us and support us, and even still, meeting Deaf families with Deaf children has not happened for us. I am very grateful for the Deaf teachers and friends I have, for their support and mentorship and understanding and support for Kate (Denise, Kat, Phillip, Les, Todd), but I feel that there is a lack of resources and outreach from the Deaf community. And this is my difficulty with the strong stance against hearing families and their deaf children who are choosing technology, cochlear implants and full integration into the hearing world/culture. Some members of the Deaf community have high expectations of us with respect to the Deaf culture. They should go to Deaf (residential) schools, they should play with other Deaf kids, they should learn ASL exclusively, they should not be ‘forced’ to learn to speak, we should not be giving them cochlear implants. It is a strong position to hold when there is not much support to the hearing families of deaf and hard of hearing children to access Deaf culture.
Having her CIs has not been easy for Kate either. Because she can ‘hear’, people make assumptions about her; that she can hear them from a distance, or above the noise of a crowded room. They don’t realize it takes a lot energy for her to focus on hearing, that her hearing is digital, and that they should speak close to her microphones, clearly and face her so that she can still see their lips. Though we are grateful she has them, CIs are aided hearing, they are not the same as natural hearing.
I have chosen both worlds for Kate, and as she grows and evolves, I see her ability to communicate emerging. We are now at a crossroads with her as she has had her CIs for over 3 years and still has little language. She hears us (well, we think), she understands us, she has some words, she has some signs – and we have been ‘educating’ her in both equally. But now I see that we may want to try even more immersion in Deaf culture and ASL in hopes that we can support her ability to communicate and develop language even more. This opportunity is available to us now because she is school-aged and can attend the one and only Deaf and hard of hearing program in our local school board.
It doesn’t matter to me if she becomes part of the hearing world, or Deaf world, or both. It matters that she is the best she can be and that she is happy. I think that is what we all want for our children.
I never thought I would hear Kate speak, say ‘mommy’ or tell me that she loves me. She can do both now, in ASL and in speech.
How do I describe Kate? She is Deaf and can hear and she is deserves both worlds.
Julie