Seeing, and hearing the world in a different way
4 Jul 2021
By Tim Stones
When people meet me for the first time, I am quite certain that the description “deafblind” is not the first thought that springs to mind.
After all, in most interactions, I don’t look or sound like I imagine most people would think of as a stereotypical deafblind person. But the truth is, this is a part of who I am. I am Tim, and yes, I am indeed deafblind.
June is Deafblind Awareness Month. Deafblindness is a unique disability, where the combination of hearing and vision loss affects a person’s ability to communicate, access information and get around independently.
Most deafblind people are not completely deaf or completely blind, often maintaining some degree of use in both senses. However, the combination of the dual sensory impairment has an impact on several aspects of everyday life.
Even where the loss in each sense is mild, the impact can be significant as the senses work together and one sense would usually help compensate for the loss of the other.
I lost most of my hearing through oxygen deprivation at birth.
I have bilateral sensorineural deafness.
This was not picked up at birth, however, and I was only correctly diagnosed and fitted with my first pair of hearing aids just before my sixth birthday, when I learnt to speak and to read for the first time. At the age of 12, diagnosed with myopia, I started wearing glasses as well.
After matriculating from St Andrew’s College in Makhanda with a first-class matric, I proceeded to UCT, ultimately graduating with an MA in religious studies and later a postgraduate diploma in journalism from Rhodes.
After six years working as a researcher with the National Institute for the Deaf, in Worcester, where I designed and led training for deaf people across Africa in leadership and management skills, I served Rhodes University as their disability adviser, before joining the Daily Dispatch as a journalist.
Over the years both my hearing and vision have continued to deteriorate. Three years ago I acquired a cochlear implant in my left ear as I had by then become profoundly deaf.
My audiologist doesn’t fully understand why this progression has been as drastic as it has been, given the source of my deafness was a loss of oxygen at birth and, as such, further deterioration, especially to this degree at my age, would not be usually expected.
Myopia usually stabilises by the time a person is about 20 years of age. Mine has never stabilised.
I am now legally blind — defined as vision that is best corrected to 20/200, or periphery vision of less than 30°.
The way my eye specialists have explained what is happening to me is that I have high myopia, which is also progressive or degenerative.
The biggest issue I face is that my retina is losing functioning, and quite rapidly, as there has been a significant decline in my vision over the past three years.
The cruel irony is that this drastic loss of vision coincided with my hearing deteriorating. I thus cannot rely on either sense to compensate for the significant decline of the other.
When I think of my life now as a deafblind person, I mostly see it as a blessing.
Yes, of course there is no escaping the hard realities that especially the decline in my vision have brought.
I feel this most poignantly in having lost my ability to secure a driver’s licence, as my vision is so far off the mark that the optometrist’s chart used for tests for those who wish to avoid the long queues at the traffic department doesn’t even include my prescription.
And with losing the right to drive comes a loss of independence, a greater need to rely on others when transport is an absolute necessity.
Thankfully my wife and I are very fit, and we live a short walking distance from the shops. Being sporty, it’s become a welcome chance to boost our weekly mileage!
As I still have some vision, and can access sound through my cochlear implant and hearing aid, I do not battle with communication as much as many deafblind people do.
However, navigating communication in the Covid-19 lockdown has been a huge challenge.
One cannot lip-read through masks, and assistive listening devices do not always enable one to follow what is being said.
Coupled with vision loss, and the need for social distancing, there have been many moments, especially at the shops, where much has been completely lost in translation.
Thankfully, most times I have my wife, Mercia, with me. I am her ears (she is also deaf, and relies completely on lip-reading), and she is my eyes.
I help her to know what is being said (when I myself have worked it out!), and she alerts me to what I may not have seen, or might bump into. We make a great team.
The greatest blessing that has come from being deafblind has been the extraordinary opportunities it has provided to experience things I would never otherwise have imagined doing.
I have had the privilege of representing my country as a sportsman in deaf athletics, deaf rugby and para triathlon (and a call-up to the national para cycling team), and have travelled to several countries, experiencing diverse cultures and peoples.
Being active in para sport has played a pivotal role in helping me hold on to joy in the midst of the mountains I face daily.
I chose to respond to learning that I had become legally blind by channelling much of my energy into sport.
As a deafblind person, sport for me has become a metaphor for hope, purpose, and living one’s best life no matter what barriers or challenges we encounter along our path.
I face more barriers these days, more challenges, but sport, and dreams, keep me grounded, focused, and full of joy.
We create our own destiny, led by God, inspired by His constant goodness and grace, filled with wonder and awe that we are because He is.
How can one not marvel and rejoice, despite the mountains we all face in one form or another?
Reflecting on happiness, Helen Keller said: “Your success and happiness lies in you. Resolve to keep happy, and your joy and you shall form an invincible host against difficulties.”
Choose to be happy.
I choose to focus on the amazing adventures and experiences and opportunities that have come my way because I am deafblind.
I see it as a way of being, and an incredible way to experience this world.