Hi Miggy, I am happy to be part of your spotlights. I always read your spotlights and have been awed by the strength and endurance that the different families portray. I know my story is a little different from most and I hope I get my message across. Thank you for letting me share my story.
Miggy: Welcome Lynn. I'm so glad to be featuring you and your story on my special needs spotlight series today. Let’s start at the beginning shall we? When you were 2 ½ years old you had viral meningitis, and when you were 5 it was discovered that you had lost over 75% of your hearing. Can you tell me what those early years were like for you as a child with significant hearing loss? Is it appropriate to use the word deaf to describe you? How did your family and you adjust to this new life?
Lynn: As you’ve mentioned, I had viral meningitis when I was 2.5. I have no memory of this or the fact that I had lost a large portion of my hearing. It was while attending kindergarten that my teacher noted that I was inattentive during story times etc. I thank her every day for being so observant. My parents immediately set about getting my hearing tested. I have a sensorineuralloss and wear bilateral hearing aids. My degree of hearing loss is considered severe to profound depending on the sounds.
I received my first hearing aids when I was 4 years old. I was so proud to be wearing them and thought I was super special because nobody else had them. I started off with a really old style hearing aid and in one of the photos I sent you can see the outline of the hearing aid under my outfit. I wore that style hearing aid right up until I was 15 years old. After that I started wearing behind-the-ear aids and I still do actually. As I was so young when I started wearing my hearing aids, I don’t know what it is like to not wear one, which in many ways has made life easier. I do recall feeling frustrated with how often my aids would break down and I would have to wait for them to be repaired. My hearing aids allowed me to hear more sounds like voices etc., but it didn’t change my HOH behaviour. By that I mean, I was still hard of hearing and my awareness of environmental cues around me was very limited. A deaf or HOH person isn’t able to locate where sounds are coming from easily or at all. Sometimes I will feel a sound before I actually hear it. Most times, if I don’t hear a sound…then it simply isn’t there...that sound isn’t imprinted in my brain and I have no awareness of it. This was a worry for my mum when I was young because I frequently had to be reminded when outside playing to look out for cars, bikes or people etc.
I don’t think my hearing loss diagnosis changed a lot for my family in that day and age. My parents were quite young and already had a 14 month old when I arrived. I don’t believe they received any extra assistance or support. The one thing they were advised was to enrol me in a regular school rather than sending me to a school for deaf students. I believe that was a good decision. I did have the odd visit from an itinerant teacher for the deaf who was associated with the school district I was in, but I never learned to use ASL instead I became a fluent lip reader. I didn’t learn lip-reading, it is just something I picked up.
In terms of referring to me as deaf…that is all I was ever referred to as until I was an adult. In fact I recall the first time I was confronted with the fact that I was not considered ‘deaf’, but rather, ‘hearing impaired.’ I was born and raised in Australia, but currently live in BC, Canada. I am not sure if the two countries have different perspectives on what is considered deaf or hearing impaired, but these days I usually refer to myself as having a hearing impairment. However, the politically correct term for my hearing loss is that I am considered hard of hearing (HOH).
Miggy: As a school aged child, how did having significant hearing loss affect your day-to-day life? Did you face discrimination from your teachers and fellow students? If so, wow did you and your family cope with those things?
Lynn: As a child in elementary school I wasn’t faced with a lot of discrimination from my peers and I felt relatively normal. I knew I had a hearing problem, but it wasn’t a big issue for me. Many kids would ask me what the box thing was that I wore and why. They accepted my explanation and life went on. This changed as I entered my teens and into adulthood. At elementary school and in the classroom I was frequently puzzled as to why the teacher was shouting at me. I understand now that the teacher was probably shouting because he/she thought I would hear them better. Sometimes I just didn’t hear certain instructions and would get into trouble, but like I said earlier, if I don’t hear something…then it doesn’t exist. I remember being asked constantly, ‘Why didn’t you listen?” I was a fairly passive child and a people pleaser so to get into trouble was huge for me. Expectations for me were low and it was usually coupled with the comment…”Oh well, you know she is deaf!” I didn’t understand stigmatism then. I also recall trying to answer questions when they were asked in the classroom and being made fun of because I had either misheard the question or somebody had already answered it and I hadn’t heard. I had no IEP when attending school and no adaptations were ever made for me. Despite all of this I coped with elementary school and moved onto high school.
My high school years were short…I dropped out just before I was 15 years old. High school was much harder not just academically. I could cope with that, there were many other issues. At elementary school, you are usually in the same classroom with a regular teacher. That gives a HOH child time to acclimatize to their surroundings and find what works for them…the noise is limited to what the teacher allows and you work with it. This all changed in high school for me. I had to change classrooms and teachers frequently who all came with their own ways of teaching and talking. For example if I had a male teacher with a moustache or beard it was way more challenging to lip-read him. Many of the teachers stood in positions where I couldn’t lip-read such as standing in front of the window, which put them in the shadow. The frequent cross chatting between teachers and students increased and I found it very difficult to follow. I never raised my hand to volunteer information because I was so scared of getting it wrong and being ridiculed. My peers thought I was different and my hearing aid at the time was highly visible and I felt very self-conscious. All of these factors added up and I got dejected and gave up. My self-esteem was very poor as I felt such a failure academically and socially. I had no confidence in my ability to do well. At that time of my life I really fitted a lot of the criteria that is associated with HOH people, which is that I was a high school drop out, and unemployable. My family were supportive, but felt helpless. It wasn’t until I was almost 22 that my older brother convinced me to sit for the mature-age exam for entrance to a teacher’s college that I returned to school. I completed my three years at college to get a teaching diploma. I later returned to school and completed my Bachelor of Education. I was more assertive about needing extra help during my college and university days, but it was very limited in what was offered. This frustrated me when I saw that ramps were being built for wheelchair bound people or described video was provided for visually impaired people...and that is what should have been happening, but there was nothing provided for students with hearing losses.
Miggy: As an adult and a teacher how do your hearing loss affect your day-to-day life now?
Lynn: To me I have always been HOH so answering this is question was quite challenging because everything I do is normal in my world. I am of course older now and have come to terms with what I can and cannot do. Sometimes I have moments when I wonder what my life would have been like had I been a regular hearing person. The biggest effect my hearing loss has on me is how it has shaped me socially. In my personal life I have a small, but understanding group of friends who know I don’t do well in large crowds so we tend to meet in quieter places. I do force myself to go to large gatherings at times though because it is not a perfect world and it is not all about me. There are times when I just wish I didn’t have to think about how noisy something may be and if I have the energy to cope with it. In the classroom, I am in control of the noise for the most part so that is not usually a problem. When I am having a problem hearing a student, I simply ask another student closer to me to repeat what they said or I walk closer to the student who was talking and ask them to repeat what they said. Outside of the classroom it is more difficult and I navigate that by trying to limit what I want to hear. For example, I don’t always eat in the staffroom because it is way too noisy with people talking, microwaves pinging and PA announcements going on. I love modern technology…using the phone has always been my least favourite thing to do so texting and chatting online are perfect. I have captions on my TV all the time too. When I was younger I felt like I had missed out on so many things that are taken for granted. An example of this is music…I can hear the music, but struggle to make sense of the lyrics because I can’t lip-read them. Thankfully there are apps now on my iPod that allow me to follow the songs by reading the lyrics. It opened a whole new world for me. I have also learned to be highly visual of the environmental clues around me so that I can be safe. For a HOH person it takes a lot of concentration to listen and it soaks up your energy.
Miggy: Now for a lighter question, I’m a big believer in seeing the humour in life and learning to laugh, are there are funny conversations/moments directly tied to having significant hearing loss that you can tell us about?
Lynn: Oh my goodness, there have been so many occasions when a simple misunderstanding of a word has led to utter confusion or hilarity. My dad is also deaf, but it is unrelated to my loss, so at home there was always something going on, my poor mum. So many conversations were started with, ‘Are you switched on?” as I had/have a habit of switching my hearing aids off when the noise overwhelms me. I recall an occasion when my dad and I were painting a room and he called to me from another room and asked me if I knew where the cloth was that we were using for spills. I told him it was in the sink…he was totally confused as he looked in the sink for the ‘clock’ he had asked me for! As I can lip-read fairly well, the classroom is a mecca for catching inappropriate words or phrases being uttered and the total astonishment on the student’s face when I call them on it is hilarious…well at least on my part! As a young child I had difficulty hearing and pronouncing the sound ‘ch.’ It all came out as ‘sh’ and of course my favourite movie at the time was “Chitty Chitty Bang Bang.” It took a long time for me to realise why everyone thought this was so funny!
Miggy: In your email you talked about being a teacher and letting your students know about simple things they can do to adapt to your needs. I'm curious to know how kids generally react to this request. In general what do you want people to understand about making these kind of adaptions and how can we as a society be more flexible in this realm?
Lynn: Over the years, I have learned that people respond to me better when I am honest with my hearing loss rather than trying to hide it. I make a point of chatting to my class early in the year about my hearing loss and the fact that I need to wear hearing aids. I tell them why I am hard of hearing. I explain my hearing aids to them and how they help me. I usually ask them what are some noises that really bug them and I get a range of answers that can be quite hilarious. This leads to me explaining how some noises are really amplified with my hearing aids and how they can help…so we talk about tapping pencils or feet, drumming hands, whistling, humming and a thousand other sounds they come up with. The children are very receptive and understanding. We also have a different discussion about the fact that I need to have them facing me when they talk because I lip-read. This is probably my biggest challenge still as we are talking about kids here and they forget, so frequent reminders are necessary. I consider it a miracle I haven’t maimed a child yet due to them coming up behind me and I have stood back etc. Society in general doesn’t realise the challenge HOH people have and I get that. I think if I could just say to people in general, please be patient and understanding when someone is having a hard time hearing you. The following tips may be helpful.
- Get the person’s attention in an appropriate way.
- Face the person and stand close to them.
- Have the light on your face and don’t cover your mouth.
- Speak more slowly than usual, but not super slow that it makes them feel silly. Rephrase the questions in a different way if necessary.
- Raise your voice if you have to, but do not shout.
- Speak expressively and use face, hand and body movements.
- Be ready to use a pen and paper.
I don’t know about other HOH people, but I really dislike being poked or touched when people are trying to get my attention because it usually startles me. I also dislike it when people are yelling/calling out to me to get my attention. I can’t usually identify where the sound is coming from and I feel like everyone is looking at me when I don’t respond. I have lost count of how many times someone has told me that they were calling me and I didn’t answer. Remember, if I don’t hear you, you are not there!
Miggy: You also mentioned that a question you get asked a lot is why aren't you a teacher for deaf students instead of being a typical teacher for typical kids and people. Your answer of course is why? Why shouldn't you teach typical, able-bodied students? One of the reasons I love the TEDTalk from Stella Young so much is that she talks about people with disabilities being used as "inspiration porn" and that we don't see people with disabilities as doctors, teachers, nail manicurists--in short, as regular people--but we the able-bodied community--use disabled people to feel better about ourselves and when we do that, we limit the opportunities for the disabled. I don't know exactly what I'm trying to ask here, but I guess could you elaborate on why that question bothers you and what you would like other people to know about in regards to having a disability AND a job teaching typical kids?
Lynn: I guess my biggest issue with the question of why am I not teaching deaf or HOH children is that it puts me right back into the box that I have been trying to climb out of all my life. I feel that I have always had to ‘prove’ myself. I realise that many people are saying it with kind intentions. However, it is exactly what you said…able-bodied people don’t always have the same expectations for those who have a disability. I also enjoyed Stella Young’s TEDtalk and totally support her thoughts when she says she wants to live in a world where someone with a disability is considered the norm rather than the exception. I don’t want extra attention because of my hearing loss. Sure I need some extra help, but I just want people to recognize that my hearing loss is part of what makes me, me…but it is not all me. I am more than a HOH person and I am capable of doing what everyone else can do…except hear! I don’t teach because I want to be an inspiration to my students…I teach because I love teaching. I would like to recommend another Tedtalk that sums up a lot of what I feel.
Miggy: One of my favourite shows is Switched at Birth, which details the life of a young woman who is deaf and takes the viewers deep into the deaf community. Before that show I honestly had no idea how tight that community is! Do you consider yourself to be a part of the deaf community? If so, can you tell us a little more about that community and what it's like to be a part of it?
Lynn: I have never been part of the deaf community. I was raised in a hearing family who never learned to sign and neither did I. I do regret not learning to sign because there have been so many occasions where sign language has been offered and it would have been great to have that option so that I could understand what has been said. I understand the need though, that deaf people have to be part of a community that is catered for them. Deaf or HOH people must live in a hearing world and communicating with others is extremely important. It is only normal that we seek out those who have similar interests. In the deaf community everyone is the same, whereas in the hearing world, deaf or HOH people are considered different. The deaf community can design their own lives around what they can do, rather than what others think they should do.
Miggy: If you were able to give any advice to a mother who just found out her child had significant hearing loss what would your advice be? Is there anything else you would like my readers to know about hearing loss or disability in general--an overarching message or lesson?
Lynn: I would like people to educate themselves more about how to communicate with a deaf or HOH person. I don’t mean to suggest that everyone needs to learn ASL, but if you do that is awesome. Do the research and become familiar with how you can contribute positively to someone’s daily life that relies on you being kind and patient with him or her, particularly children as they are so vulnerable. If you are a mum of a deaf or HOH child I can only use my own family’s example on how they treated me. I was treated just like any other child and my parents had the same expectations for me as my other hearing siblings. They were also my biggest advocates and that is what helped me get where I am today. Give your child every opportunity to learn how to communicate whether that be speech therapy, ASL or lip-reading or all of them. Advocating for your child and teaching them to become as independent as possible and not enabling them will be the most loving thing you can ever do.
Lynn, thank you. That was wonderful. I'm so glad you shared your experience in high school with us as I think it's extremely important for people to understand how all those small factors added up to big challenges for you. As kids--even teenagers--sometimes it's hard for us to put words to our feelings and emotions or to even properly explain why something is challenging and not working for us. To have you spell out everything from having a lot of different teachers to teachers not standing in a position for you to be able to lip read, makes complete sense to me, but I can see that most kids in your position would feel at a loss to explain these things. What I'm saying is that it's important we as adults and society on a whole don't put children in a position where they have to advocate for themselves. Which brings me to your final thought and is something I would say applies to special needs parents across the board, "Advocating for your child and teaching them to be as independent as possible and not enabling them will be the most loving thing that you can ever do."
Thanks for reading and supporting the SNS. If you or someone you know would like to participate please email me at thislittlemiggy @ gmail dot com.
Have a great weekend!