Lib’s story

Profoundly deaf and fitted with a harness containing two large microphones the size of small, thick coasters, the harness went over my head with the speakers on my chest and strapped at the back, with two speaker wires trailing up to my ears where they were attached to small earpieces that sat in my ears.

At around 5 years old in the early 70s, earpieces weren’t trendy yet.

I remember putting my jumper over the top of the harness to hide it from embarrassment, but all I could hear was the rustling of the material in my ears and not much else. They weren’t very effective anyway.

Mum put me in a special school for the deaf in the next town, I loved it because I did so well… they decided I wasn’t deaf enough for their school so mum put me in the normal school.

I didn’t do so well anymore. I couldn’t read the teachers lips because she had 20 other kids who could hear her and often had her back to me.

That was infants school.

Primary school and high school followed in the same vein. I graduated to behind the ear hearing aids that still weren’t very effective, but mum said they were better than nothing. She also said I should be grateful I had good vision.

I was very good at English the whole way through school, but not much else.. I do remember doing well in cooking, the teacher had a wonderful clear voice and took particular care that I heard her.

I really wanted to do well in art but the art teacher in year 9 had a very soft voice and I remember feeling frustrated and sad.. I started wagging school after that. Since the special school, I didn’t feel like I fit in or belonged anywhere. I don’t remember ever meeting another student with hearing aids.

I’d discovered books very early, mum would read to us nightly. Books were everything! I never missed a word and was able to comprehend because there was a clear uninterrupted flow of information that I processed almost hungrily.

A deaf person has interrupted flow, they rely on secondhand reruns of the original, which is sometimes not quite correct.

I left school at 16 and after a failed attempt at a bakery, so many voices, trying to serve customers, not hearing their orders and getting them wrong, customers thinking I’m stupid or rude.. I wasn’t asked back.. I got a job at Kmart and did ok.

It was around this time I was diagnosed with Usher Syndrome, which affects the vision and the hearing.

“You are legally blind and may be totally blind by the time you’re 40. I recommend you get yourself on the blind pension because you will likely find it very hard to keep employment, it would be best if you don’t have children so we can stamp out the faulty gene.”

The eye specialist was a kind old fellow who seemed genuinely upset for me. I felt numb and resentful. Mum was devastated.

I had 20 degrees of vision then, it was mainly at night when it affected me most, rendering me as virtually black blind in the absence of light.

I moved to the country where my brother was working in the shearing sheds. He got me a job as a roustabout. It was hard physical work and I thrived because it didn’t matter if I couldn’t hear, I could work hard. I went to Ag College and in spite of only hearing bits and pieces earned my woolclassing certificate.

My vision would gradually worsen over the years by around a half a degree per year.. very slowly. I would walk into things all the time , bruised head, black eyes, scarred shins.. it became normal, I was known as clumsy.

I married a farmer and had children in spite of being advised against it.The marriage didn’t work and I was then a single mum.

My kids are amazing human beings. Growing up with my disabilities has taught them so many things about life and compassion for others. And yet they missed out on a lot because of my disabilities. Support for disabilities in small country towns was and still is minuscule if at all.

Not once, ever, have I or my children been offered support to make sure they didn’t miss out because of their mother’s disabilities.

Because of my low vision it wasn’t safe to drive, so I had a caddy on wheels which I towed behind my bicycle with my two daughters in it when they were just toddlers. I would do the shopping on this. Tucking the full grocery bags in and around the girls, they would wave at people as we rode past.

I relied on family and friends for lifts, no public transport in small country towns.. one taxi that was often in the next town so unavailable and unreliable. We got by.

I met another man. We had a son. He became my carer and received a carers pension from Centrelink.

He became abusive and didn’t take us anywhere, even to appointments.

My family and friends didn’t like him and stopped visiting.. it was so hard to get out of that relationship and took so long. Because I couldn’t hear I avoided the telephone. When I eventually called the police on him I couldn’t hear them.. I had to text my sister who lived far away to call the police for me.

I’m 52 now and still have around 9 degrees left in the middle, so not totally blind.

I now have a seeing eye dog and cochlear implants and my quality of life has vastly improved. It’s wonderful and I’m so grateful for the human beings that come up with such amazing concepts. I’m also blown away by assistive technology on smart devices that keep getting exponentially better. My hearing will never get worse now, only better (marginally)with each upgrade. Sure it will never be as good as natural good hearing but it will never be as bad as it was. And I now have Bluetooth capability that I don’t think many realise how profoundly it helps when listening to Netflix, audible books, phone calls, radio, YouTube.. no lip reading or subtitles needed… I can’t express enough how much these things impact positively on my life. I feel connected now in a way I never thought possible for me.

The NDIS came along and sounded marvellous at first. It is a marvellous concept, it’s just the people running it don’t seem to have disabilities. Or know anything about what it’s like to have a disability. They also don’t seem to realise that smart phones and tablets are cutting edge in assistive technology. They say things like we will gladly fund the assistive technology that costs thousands, is clunky and will soon be obsolete.. then when I say all I need is an Apple iPhone and iPad , oh no we don’t fund those.

Please understand .. iPhones and iPads may seem like luxury items to those that don’t need assistive technology, but the autonomy and engagement with the community they offer to those that do need assistive technology is seamless and invaluable.

• Deafblindness is not recognised by NDIA as a unique distinct disability type in its own unique category with its own barriers ..for example, a person who is only vision impaired will use their hearing to compensate for their lack of vision and the same with an only deaf person who will use their vision to compensate.. in that light asking a person who has a lack of both to identify as either one is like asking a quadriplegic to identify as loss of arms or legs.. which one.. you have to choose. It’s ludicrous.
• As a person who is Deafblind, I have needs that are not the same as a person who is Blind, or a person who is Deaf, so please don’t offer me their support system. I know what my support needs are, I’m actually the expert on my needs.

Ideas for change

We are all humans and thrive on connecting with one another. That doesn’t change whether we have disabilities, are speaking a different language, look different or look seemingly “normal”. We are one but we have different abilities , let’s accept that and teach children to accept that it’s normal to be different, it’s ok and acceptable. If this outlook is adopted by education systems and taught from a young age the future for people with disabilities will be so much happier.

In my opinion it is prejudice and ignorance that stops people with disabilities getting what they need to live a rich, connected life where they feel accepted and that they belong.

Prejudice and ignorance stops people from empathising and stepping into shoes so as to understand what the individuals needs look like. Ignorance is an actual disability.

People with disabilities often aren’t employed. They’re too different.

I would like to see the NDIS employ people with disabilities so that people with disabilities get their needs met by people without prejudice.

The definition of prejudice is.. “a preconceived opinion that is not based on reason or actual experience.”

By Lisa (Lib) Mitchell
Deafblind.