They gave me $5 700. A quarter of that was to pay a plan manager. $5 700 in my budget and over $1400 of that goes to the plan manager. Meanwhile I get a couple of thousand for capacity building but no communication support. No interpreting nor captioning, nothing. Quite how I am expected to do capacity building and not be able to communicate effectively is anyones guess.
And then I get $400 for low cost equipment. OMFG. What am I supposed to do with that. $100 apparently is to pay for my Office of Hearing Service Voucher. Just exactly what I am expected to spend $300 on I do not know. I wanted to make my house safe. I wanted flashing smoke alarms. A flashing door bell. I wanted to link it with my smartwatch so it notified me. $300, let that sink in.
I never wanted to apply for the NDIS. I dreaded it. I have had no luck with access in the past. It’s been a long hard struggle. I am constantly fighting the system and never ending audism. I am constantly fighting prejudice and I am tired. My mental health is shot. I am on anti-depressants. I have lost faith in the world.
I am deaf. I have two cochlear implants. My implants help me. But they have their limits. I need assistance in big groups. I need assistance to communicate and participate. The assistance is not just for me, it’s for hearing people too. I learnt Auslan later in life to help me to communicate. I work as a deaf professional in the disability sector.
I have studied and worked with people who I expected to understand disability. Funny that these people are the ones that often give me the hardest time. I asked for interpreters at university and I was at first denied. Too expensive they said. I had buddy note takers who forgot to give me notes and I was for ever chasing them. Study was hard. It was a constant battle.
When I complained about my “peer” note takers I was seen as a trouble maker. I was shunned. Peers stick together right? Don’t believe it. University was a lonely place for me. I was seen as a thorn in the side and a trouble maker because I fought for access, demanded interpreters and demanded extra support. Threatened them withe DDA and so on. Hearing people don’t have to deal with this shit. It’s tiring.
I work with hearing people who are professionals who supposedly understand disability. Bahahahahahahahah. My first boss would hang up on my Facetime calls. I preferred FaceTime so that I could lipread her. She would keep calling me despite knowing of my struggles. My 35 years of lived experience as a deaf person meant nothing to her. I was going to do it her way or it was the highway. I wonder just how much she did learn from her university education.
I had another boss who thought it was OK to walk up behind me, lift up my hair and ogle at my cochlear implants. Yes, behind me. So sorry if I jumped up startled when she did so. I don’t have eyes in the back of my head you see. She seemed to think that I was some sort of interesting specimen. She could just touch me and interfere with my boundaries at any time. “Oh Deaf girl over there, what an interesting thing, I will just go admire the fact that she is alive.”
Hearing professionals who work with disabled people never cease to amaze me. I was banned from using the National Relay Service because it upset clients, apparently. I have to attend conferences to keep my qualifications up to date. Hearing professionals seem to think it’s ok to cancel captioning or interpreting because in their opinion the workshop nature of the event will be easy for me to access. And anyway they have assigned Bobbie to help me if it gets difficult. FFS these people are supposed to get the impact of disability. They are totally fucking clueless!
And fucking government agencies like Jobaccess and NDIS who keep calling me. Look at my fucking file, it says don’t call. I mean just today to discuss my NDIS plan they called. Then they emailed. Then when I emailed back they called again. I have a bloke helping me with my appeal. He sent them a strongly worded email and said that if they called again I would be complaining to their boss and the NDIA itself. But why must I always fucking complain.
Then there was my boss who gave me a verbal warning because there were parts of the job I couldn’t do properly because I couldn’t hear. Well fuck off!! You knew I was deaf when you employed me. And fuck it, if you are such an expert on deafness why didn’t you give me proper access to start with.
It’s been a hard slog. I am emotionally spent. I have depression and sometimes I just cannot cope. I had a breakdown once in a learning environment. Did they help me? Did they fuck! They sent me home because I was distracting the other learners you see. These are people that work with disabled people and are supposedly trained to do so. They have no fucking clue.
I finally got around to applying for NDIS last year after much cajoling from my cochlear implant audiologist. Because they would cover the cost of batteries. (I use two 675 batteries, per processor and every 24 hours). Because they would cover the cost of repairs of my cochlear implants. Because they would… promise me the earth and the sun and the moon. And all the planets in between. And it would be very easy, she reassured. As I had no residual hearing left, it would be very likely that I would get automatic approval.
So I applied. But fuck me I wish I hadn’t. It is more stress than its worth. Already I am crying. Already I am having anxiety attacks. Every time my phone rings I think it is them. I go on Facebook and I see that the NDIS have fucked up with so many people. Some poor parent can’t get a wheelchair for her kid. Her kid has outgrown his chair. He is in pain. He has pressure sores. They can’t even tell her where her application is up to. I realise that’s what I have to look forward to if I choose to appeal. My anxiety goes through the roof!
Is it worth it? I don’t think it is. Just fuck off!! I am done!