Through my eyes.. and ears

My story begins in 1967. At the age of three and the third child of three, I was diagnosed with a mild sensori-neural hearing loss along with my six year old eldest brother. We were fitted with hearing aids and continued with mainstream education as our hearing loss was too mild for any specialised education that may have been available back then. When my youngest sister was born in 1969 she was soon diagnosed as well, leaving our other brother and sister unscathed.

Regardless of the hearing aids, our capabilities at school were limited and problematic for several reasons. Overtime we were told our hearing loss was degenerative as demonstrated by regular testing hence we increasingly relied more heavily on lip reading, clarity and volume to understand speech. In class we lacked the confidence and awareness to ensure we were keeping up with what was being taught and instead just bumbled through in an effort to appear ‘normal’ like our classmates. In hindsight, this resulted in poor grades in most subjects except English since hearing impairment brings about a love of reading. There were no gaps in the absorption of words on a page.

As I got older, relationships became more difficult. My inability to flow in conversation and engage easily with peers meant I was in the too hard basket and unable to form lasting friendships. In hindsight I feel this was probably due to a lack of awareness and maturity which was a natural beast in its time. I also know now that I had a lot to offer being a kind, caring and loyal person albeit afflicted with a complex sensory loss that ordained my entire life.

At age seventeen I experienced irritation and fuzzy vision in one eye so booked a visit to the family GP. After taking a look he seemed a little puzzled and concerned while mumbling that he would contact me for another appointment soon and that I was not to worry. Arriving home, I took another look at the eye drops I’d used a few days earlier only to discover they were dilation drops rather than saline and realised I had unintentionally enabled the doctor to easily view the back of my eyes.

Much to our surprise, the next appointment with our doctor also included my parents, my youngest sister, my eldest brother and his new wife. The doctor explained that after seeing my retinas he researched eye conditions and revealed that I, and my deaf siblings, had an eye disease called Retinitis Pigmentosa (RP) which causes blindness by around age forty. Searching further, he also concluded that our dual sensory impairment was linked, confirming a diagnosis of Usher Syndrome – a combination of degenerative deafness and alas, vision loss. He also added, rather tactlessly, that we should consider not bearing children as we would be passing the disease through to future generations. In addition to these mind numbing revelations, he explained that both of our unaffected parents had the rare recessive Usher Syndrome gene that is only passed on to their children if both parents carry it.

Our parents were both born in the same year in the same hospital in a tiny remote country town bordering the Murray River. They were raised in very different families and knew of each other but didn’t meet until they were seventeen then married within a year. The population was approximately 900 back then  so one might logically think that given they both carried the same rare defective gene that surely they must be related. Researching their family trees has shown this is unlikely which obviously causes our family and the fields of ophthalmology and audiology to shake their collective heads in amazement.

What I would like to express to the powers that be and the world at large is that this particular dual sensory loss is extremely unique and in a category of its own. In fact, it’s unique for each DeafBlind person even between siblings which emphasises how necessary it is for each person with any disability to be individually assessed on their very own set of supports. Now that I am fifty seven years young, my own experience dictates that I am the expert on how my disabilities affect me and what it is I need to lead the best life possible. I am not blind, nor am I deaf – I am DeafBlind. If you lost your hearing what would you rely on most? If you lost your sight what would you rely on most? If you lost both, what would you rely on?

The wellbeing of mental health among people with disabilities is largely overlooked by both the general population but more so by NDIA and so called disability support services. Having to navigate the world with a disability or in my case a dual disability is traumatic, isolating, frustrating, depressing and many other negative mental health issues. Where is the Department of Mental Health and Wellbeing for People with Disability?

My youngest sister and I have been very fortunate in recent years after receiving bilateral cochlear implants at a time when our hearing loss had deteriorated to virtually zero. Hearing aids weren’t working for us anymore and the feelings of isolation the hearing loss caused us were so significant we became progressively more reclusive and antisocial. The frustration and chronic grief of gradually losing my hearing and vision with thoughts of a hopeless future where I wouldn’t be able to see my children or grandchildren’s faces nor hear their sweet words was, at times, impossible to bear. Feeling like a burden to others became my own burden which I now accept as inevitable and immutable. While my vision has declined to the very minimal, I am now able to utilise my hearing via cochlear implants to assist and compensate in many ways for my lack of sight.

My current needs as a ‘DeafBlind’ person are very different from a blind person and different again from a deaf person. Technology is my best friend – what I’ve discovered over the last few years is that, generally across the board, factions like the NDIA and disability support sectors have it very wrong. For some reason ‘assistive technology’ only consists of very expensive specialised equipment that is usually clunky and not very user friendly. I happen to have an iPhone and iPad that do all the above and beyond, costing a quarter of the price and easily transportable. I find it so puzzling that smart devices like these are not funded especially for those like myself because these devices, through Bluetooth technology, allow me to hear almost perfectly, therefore enabling me to rest my eyes from the constant strain that is usually necessary to make use of the very little vision I now possess.

The fact that a company, in this case Apple, have cornered the market in accessibility functionality is not harnessed in funding supports for people with disability within the NDIA and other areas is a huge oversight and needs to be rectified.

My final comment is this; the person/s with the disability/disabilities are the only ones who hold the expertise essential for their personal requirements – listen to those who know what is best for them.

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Published on July 19, 2022.