Blindness is a spectrum. In 2018, I was diagnosed with an inherited retinal disease called Retinitis Pigmentosa (RP). RP causes progressive, permanent sight loss and comes with a range of symptoms such as night blindness, tunnel vision or peripheral vision loss as your field of vision shrinks, light sensitivity, visual snow and can lead to glaucoma and cataracts. Glaucoma and cataracts are manageable with regular monitoring and surgery, however RP causes irreversible damage and often leads to legal blindness. There are over 150 known genes which cause it, and the speed of vision loss varies greatly from person to person. There is no cure.
Going blind was one of my biggest fears growing up and in some strange twist of irony, I’ve been quietly living with it my whole life. I first started noticing that my vision was changing when I was around 13-15 years old. I began to find it difficult to see at night and in dimly lit places. I had a few seemingly random accidents, missing a few steps on the stairs, walking into a stop sign, the kind of things you can brush off as ‘being clumsy’ or not paying attention. But these incidents continued to happen and in 2018, I finally admitted that my sight was changing and shortly after, received my diagnosis.
In the last four years, I’ve been living relatively independently, although I can’t legally drive. But something happened recently that has made me question my capability. As the AFL season is upon us, my fiancé Alec and I have been visiting Adelaide Oval to see our favourite team play and I’ve found navigating the stadium grounds at night-time very difficult, especially with so much foot traffic and people going in every which way. I had a run in with an older woman, when Alec and I were heading towards the entrance gates. I didn’t see her in my periphery until we collided.
She spat, ‘That’s perfectly fine, just keep walking into me, no problem,’ in an acidic, sarcastic tone.
I was mortified. I didn’t see her. She stormed off, huffing. What could I say? She’d already decided that I was a bad person. It put a real dampener on the rest of the night. Just two hours earlier, I was almost run over by a cyclist when I got off of a bus and started walking on the footpath. I’m still affected by these events, weeks later – the thought of what could have happened if I’d bumped into the wrong person, if the cyclist didn’t stop.
Vision loss isn’t something you can necessarily see from the outside. To the general public, I look ‘normal’. I don’t use a white cane and I don’t have a guide dog, so I don’t fit into the stereotype of what a blind or visually impaired person looks or acts like. These incidents have made me seriously consider using an ID or identification cane. ID canes are smaller, lightweight canes designed to be a visual clue to members of the public that you have a visual impairment and to take caution when walking near you. They are designed to keep the user visible, independent and safe. The problem is, you can’t just google ‘ID canes’ and buy one from the first website you see. In Australia, you are legally required to undergo some orientation and mobility training before you can use and own an ID cane.
The process so far has been difficult. I rang several organisations for the blind and was told that I need to join the National Disability Insurance Scheme (NDIS) before they will offer me their services. The NDIS is run by the Australian federal government to fund supports and services needed by people living with disability. After doing my own research, I’ve found that to be considered for vision loss support through the NDIS, you are required either to be legally blind (described as having a field of vision less than 20 degrees in diameter) – which is a very specific level and sinister expectation of blindness – or you have to have ‘permanent vision loss’. This gatekeeping of blindness and visual impairment is distressing and prohibitive. There is a large community of people who are not considered legally blind, who desperately need support and aren’t able to access it because of the NDIS’s discrimination and backwards beliefs about blindness.
It’s like they’re asking, ‘How blind are you?’ And saying, ‘You’re not disabled enough’.
Retinitis Pigmentosa causes permanent and progressive vision loss, however it can take many years for your vision to deteriorate before you are diagnosed as legally blind. This is also true for many other conditions and causes of sight loss. Before this stage, you may have to give up your driver’s license (like I did), you may find it difficult to keep working, or have issues with mobility and experience accidents or injuries in your home, workplace or in public. The fact that the NDIS doesn’t recognise or care that people need supports and services before being labelled legally blind is insulting and dehumanising.
While the NDIS has great potential and has positively impacted the lives of many people living with disability, the current system actively discriminates against the same people it claims to help. There is a culture of ignorance, stereotyping, lack of understanding of the complexities of disability, and overall apathy. Despite these glaring issues within the current system, abolishing the scheme altogether would be an indescribable loss for hundreds of thousands of people living with disability across the nation, stripping us of our independence and right to lead full, healthy, safe lives.
In the last month, I’ve joined the Defend Our NDIS campaign, organised by Every Australian Counts – the very same community which fought for the introduction of the NDIS back in 2011, two years before it was first rolled out. As the election looms, they are calling for support from members of the public and parliament to get involved in defending and protecting the NDIS from damaging budget cuts. There is an online petition you can sign, as well as several online and in-person community events you can register for in your state, and t-shirts and stickers available to purchase to show your support. I have my t-shirt and plan to make several awareness posts across my social media in the hopes that we will be heard loud and clear, that people with disability won’t be cast to the side and forgotten.
As a visually impaired person, I am fiercely passionate about dismantling the harmful and outdated stereotypes that society perpetuates about blindness, to change societal attitudes and create an accessible, equitable and inclusive world. I believe that the NDIS has great potential, but severely needs improving so that people with disability can access the supports they need without fear of rejection or the burden of ‘not being disabled enough’.
Bethany Cody is a visually impaired writer and disability advocate living on Kaurna Land in Adelaide, South Australia. She is an ambassador for international disability advocacy organisations Tru Faces and Bold Blind Beauty. She is passionate about dismantling stereotypes about blindness and fighting for an inclusive, accessible and equal world for all people living with disability.
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