I am trapped by deafness and a system that will not give me a cochlear implant. I want to fully contribute and participate in society.
Bay of Plenty
I am in urgent need of a cochlear implant. Had I acquired my deafness through an accident, I would be receiving at least one implant fully funded by the Accident Compensation Corporation through the private sector in no time at all. Yet because I have lost my hearing over time, to qualify for even one cochlear implant in the public health system, I have to be profoundly deaf in both ears. Present waiting list levels mean that I would sit in a state of profound deafness and social isolation, on a sickness benefit and unable to work for 2-3 years before receiving even one implant. The social and economic costs to society of not giving me an implant far out weigh the costs of giving me one. I am looking to raise $38,000 NZD for one cochlear implant. This translates into $34,400 CAD, $25,700 USD or 19,500 Stirling. For every dollar raised I will donate 10 cents to the Children’s Cochlear implant fund.
Here's my story. In 1997 while working as a Social Worker and undertaking my PhD studies, I was diagnosed with a progressive hearing loss and told that I might loose my hearing altogether. This has now happened in my left ear and I have about 20% of remaining hearing in my right ear. This means I cannnot perform simple everyday tasks, such as using the telephone to call my 83 year old mother or the doctor; attend a skype or zoom meeting with my work colleagues (which are more and more frequent); participate easily in everyday social activities like a book club or a night class; or perform basic keep myself safe functions such as hearing a car or cyclist behind me in the street.
I am a university professor, the founder of three not-for-profit organizations www.integenresil.com and Senior Research Fellow for a Māori Health and Development organization in New Zealand. My work is internationally recognized and I am accomplished writer, speaker, researcher and facilitator among other things http://www.kalewiswilliams.com Communication is the lynch pin of my work. Yet because I am increasingly trapped in a largely silent world, society is increasingly missing out on what I have to contribute.
Things came to a head two weeks ago at work, when I was to attend a four day intensive national meeting involving 30 top level researchers around the country. (With so little hearing these kinds of events and meetings are a considerable struggle for me in the best of circumtances). However on the eve of the meeting I developed an infection in the ear with my remaining hearing. Unable to fit a hearing aid, and profoundly deaf in the non-infected ear, I was rendered completely incapacitated in terms of my communication with others and so spent the four days by myself at home. The social and economic losses of an event such as this are many. They include lost networking, contract, research and collaborative working opportunities.
People have suggested I morgage my house to raise the money. However, I am no longer a New Zealand home owner. Due to the deregulation of the New Zealand building industry, I lost hundreds of thousands through the leaky building scam, narrowly avoiding bankruptcy.
From a human rights perspective, no one should be excluded from participation in society when means of inclusion exist. From an equity perspective how the deafness is acquired should not determine whether or not one gets help. From a social economy perspective it is far more efficient to give me the cochlear implant.
I have been fortunate in that I have had opportunities to be of service. I also have a lot yet to do. Please check out www.intergenresil.com and http://kalewiswilliams.com to learn how your help will continue to help me contribute back to society. If you have a fundraising idea please get in touch. I can speak on a number of public health issues, including this cause.
I am fundraising $38,000 for the cost of my cochlear implant. Any surplace will go into a children's cochlear implant fund.
The Big Swtich On! 1 September 2019
Tena Koutou, Dear friends, If you dont know already, Two days ago (the morning after my surgery), my cochlear implant was switched on for the first time. You can watch it here.
It's been a bit of a ride these past two days as I find my self in Day 3 of Switch On! Didnt know a general anaestheic could be this exhausting. The left side of my brain very happy to have all this stimulation, but also tiring. Had my first visit from a friend this am and enjoyed the beeps, echoes, hisses and rolls of the chat, then v. happy to rest!
Left hand side of head is tender and neck sore. Bit wobbly on the old balance (Crashed into bookcase first night and broke mum and dad's sheep from scotland), but now balance getting better. Had my first walk round block today. Bit kind of achey in left side of my head.
Also had to have the taste nerve cut - very unusual. So missing taste to a good part of the left side of my tongue. That is very weird.......
I am trying not to practice this week.......they say just rest the first week. But already I am doing little practices. I cant help myself. Got mum to say three colors behind my back this am. I got red and yellow right, but not the color purple. Not bad. Well I am a bit tired as you can perhaps tell.
This campaign page has just two more days to run. But you shall see more of this amazing journey if you would like! I will be running a "Hearing Journey's" webpage from my own site at http://www.kalewiswilliams.com soon.
Thank you all for all the ways in which you support me and for being interested to learn about this CI journey.