Good morning everyone! And welcome to my brand new series – What I Wish You Knew About _______. The aim of this series is to give my readers and fellow bloggers a platform to tell their story, to help others understand and to open people’s minds and hearts. It is a way for us to learn something new and to dispel misconceptions. People fear and judge what they do not understand. We need to tolerate each other, and in order to do so we need to understand each other. We need to be able to teach our kids to be accepting of different kinds of people and to never base their opinions on someone’s looks or stereotypes alone. If more kids had that lesson growing up – we’d have a lot less adults who are quick to judge and a lot less war.
Please note that the contributors’ opinions are their own, and under no circumstance will I allow for people to make discriminatory or horrible remarks. This is supposed to be interesting and helpful, not a an outlet for trolls. Feel free to ask questions or voice your respectful opinion, have a discussion and share with your friends!
If you would like to be part of this series, pop me an e-mail at email@example.com or fill out the Contact Me form.
Today we feature Chevone Petersen, she blogs over at Chev’s Life and is the founder of Decibles of Love. She was raised by a deaf father and is now raising her own son who also has a mild/moderate hearing impairment. Her passion and commitment drives her to work towards bridging the many gaps in our system and society’s approach to people living with hearing loss – and this is what she wishes we knew …
Gosh, where do I even start? It is invisible, it is extremely complex; often leaving parents of diagnosed children, confused, overwhelmed and isolated.
Hearing Loss. There is no blanket approach to management and intervention. A diagnoses of hearing impairment can vary across a diversity of degrees and frequencies, bilateral or unilateral. It can be conductive, sensorineural, mixed and could even have an element of auditory neuropathy. Like I said, it is complex!
Some examples of this complex reality:
- You may have two children presenting with a mild hearing loss. Whilst the one child may express no behavioral challenges, the other may struggle to hear in noisy environments and intelligibility becomes a challenge, whilst their hearing is good in a one-on-one situation.
- Another person may present with a profound low frequency hearing loss whilst their hearing in the high frequencies are exceptional! This person may hear a whisper, crystal clear clarity, from across a crowded and noisy room, yet they won’t hear you speak when standing next to them. Yes, some people find this unbelievable; the complexity of our auditory system.
Listen to this Flinstone’s Simulation of what different degrees of hearing loss sounds like:
Hearing loss is an invisible disability, and few people take the time to understand the impact it may have on the quality of life. For children, diagnoses and intervention becomes even more critical when considering the auditory cortex and the brains plasticity – its ability to re-organize itself! That is, if the auditory cortex is not receiving input, it does not develop AND other areas of the brain (usually the visual cortex) starts to take over. Yes, our brain is absolutely amazing!
In addition to hearing loss being so complex in its pathology, we now also have to consider the cultural element that comes with a diagnoses of hearing loss. This is an area that is particularly difficult for parents to navigate. Not only do we deal with the emotional turmoil of finding out that our child cannot hear, but now we also have to deal with the universal challenges and conflicting information when it comes to making decisions for our children.
Deaf culture – it is real! However, no one is publicizing the often animosity Deaf culture has towards deaf/hard of hearing/hearing impaired persons who do not use a visual language, persons and families who have chosen a listening and spoken language to navigate their world. Parents are often referred to as traitors and made to feel guilty. In extreme cases, parents are referred to as child abusers for, wait for it… for their decisions to implant (cochlear implant) their severe-to-profound deaf children! Referred to as “fixing” their children, not accepting their children for who they are.
Yes, these are the invisible challenges and emotional turmoil that families of deaf children are exposed to. Please, don’t get me wrong, I am not generalizing. Not all Deaf people are so extreme, but these are the realities that many families face. This is not unique to South Africa. Unfortunately, with the advent of medical technological advancement, some in the Deaf community fear that their culture is threatened and may be dying out with the many diagnosed deaf children receiving cochlear implants. This fear is real and goes back to the history of deaf education in the world. I mean, our own Government has failed to recognise South African Sign Language as an official language! How is that for discriminatory practices at national level?
However, Deaf Culture aside, we need to respect and accept that it is each family and individual’s constitutional right to make decision that they believe are in the best interest of their children – especially in a country where, for many years, very little has been done for the hearing impaired adult and child who uses a listening and spoken language. Many government policies fail to reflect terminology that allows equal rights to access and reasonable accommodations for the Deaf/deaf/hard of hearing/hearing impaired individual.
Yes, hearing loss is complex – not only in its pathology, but also in its cultural, social and psychological impact. Hopefully, one day, we will all recognize that there is no one approach. Often in South Africa, a child who has been diagnosed late with a hearing impairment, who have already acquired a spoken language is placed at an IMMEDIATE lifelong disadvantage if their first language is NOT English or Afrikaans! A child that needs to be immersed in a language rich environment, be it a visual or spoken language, which ever choice the family makes. The lack of resources and services available leaves me more compelled to change our failing system.
Amidst all this, we still have to deal with people referring to people as Deaf and Dumb! Really?! Why is a Deaf person who signs referred to as Dumb – when they can speak, are intelligent, able to function in our world as every day citizens? It is human nature to discriminate against that which we don’t know and don’t make an effort to understand!
What I am sharing with you today is the unspoken truths. You won’t find this on the cover of your national papers, you won’t find mainstream schools going out of their way to accommodate a child with a hearing impairment, you won’t find our government making an effort to create awareness about hearing loss or the fact that some drugs are ototoxic – resulting in hearing loss. We won’t find all government departments working together to better facilitate best outcomes for a child or an adult diagnosed with a hearing loss. NO! What you find is people, diagnosed with a hearing loss, having to navigate this journey with very little guidance and support.
I can write about these challenges of the invisible disability for days, I can talk with great passion about interventions that are needed, BUT this – what you are reading today, is but the tip of the iceberg! There are many of us, advocating for policy changes, advocating for inclusive education to BE INCLUSIVE, not only on paper, but in practice.
The purpose of this article, is to open you up to our world, to the challenges that we face. Challenges that may seem insurmountable. However, we stand tall, we put on our brave faces and we give it our everything! Our everything in a world where hearing loss challenges are not acknowledged, because we are all just so darn good at getting on with it. We make the best with what we have.
Our voices will be heard loud and clear, as we roar through the barriers of this silent ABILITY! Whilst we advocate for equality and recognition of the myriad of challenges faced when dealing with hearing loss. Constantly pushing the boundaries in our isolation…
You can read the rest of the series here.
I must say, I shed a few tears reading this article. Mostly because I am embarrassed – I have never given any of these points a second thought. I recently watched a show called Switched At Birth, and although I know it is not exactly reality – it did help me understand some of the issues the deaf community faces a bit more. I have followed Chev’s blog ever since I started blogging myself – she is a very inspirational women and I am honored to have been able to feature her today.
Did you learn something new today? Post any questions or comments you may have in the comment section below! If you would like to be part of this series, pop me an e-mail at firstname.lastname@example.org or fill out the Contact Me form.