I have two jobs. I have the one I am paid for and the other one which is mostly voluntary. In the second job I just help people who approach me. It is my pride and my curse that I am a well-known and respected advocate. What this means is that when people are in a difficult spot that they often reach out for help.
This can be for many reasons. More often it is about the NDIS. The NDIS, as they do, make decisions that make no sense to anyone but themselves. So often someone will contact me to help them with their review. You know those Deaf plans with $3000 in them of which almost $1500 goes to a plan manager? I help with heaps of reviews of these things. And get them fixed up.
Sometimes I get paid for this, sometimes I do not. Payment is not that important. The important thing is making sure that the people who contact me get the support that is rightfully theirs.
In the last month I have been contacted to assist with quite a few things. Like the LAC who won’t contact the Deaf mother who is the primary carer of her son because it’s easier for them to call and talk to the father rather than correspond by email. Or the woman that got told by Hearing Australia for nearly three years that her hearing aids were fine and that she needed a cochlear implant. Only to find out that her aids had not been adjusted properly. She visited a private audiologist who adjusted her aids properly, so much that she scored 99% on a word recognition test (true story, and she went four years telling them something was wrong with her hearing aids, but they refused to believe her.)
I help with these things. I use my networks and knowledge of legislation and complaints processes. Mostly things are just voluntary because the system and people within it just piss me off. You cannot just leave people hanging.
It gives me a great deal of satisfaction to help people and to get good outcomes for the people that ask for help. I wish that I could tell you that it’s all warm and fuzzy, but its not. Often it is triggering.
I am deaf. I am discriminated against too. I have been victimised at work. I have had to fight for interpreters at university. These fights for my own equal rights and fairness leave scars. What this means is that when I assist people, paid or otherwise, their issues often trigger past trauma within me.
Last week I met a man who was on stress leave from work. He is deaf and has not been treated well. He is hugely qualified and skilled. But at work they undervalue him. They give him breadcrumbs. Menial work that no one else wants to do.
They exclude him. Don’t include him in team meetings. They don’t ask him for his views or his ideas. They rarely talk to him or show that he is valued. Often, they will say things to him like that he should lipread and doesn’t really need any extra help through Auslan interpreters. In short, they marginalise him.
I suspect that a lot of this is because people cannot accept, don’t want to accept or can’t be bothered to do the things that will make this man feel a valued member of the team. They think that to include him and really utilise his talents would be too much bother. I suspect that they half hope that he will go away. Resign and move somewhere else so that he is not their problem.
What they are doing to this man is hugely demoralising to him. He has high absenteeism because his confidence is shot. Instead of trying to assist the man and find out what is really the issue they blame him, pressure him and refuse to accept responsibility for their own actions.
And you know he has no leave left and no income. He is in the middle of a workcover claim that can take many months to resolve. In the meantime, not only is he stressed from how he is being treated but he is stressed for his future. How will he pay for his house, support his family and so on?
And when you talk to him, he tells his story again and again. He knows he has already told you, but he ruminates. He cannot get it out of his head. As he tells the story he gets anxious. He breaks into a cold sweat. His eyes are wide and he looks around him like a startled rabbit.
At my last meeting with him I asked him if he cried often. Right there and then he burst into tears. He cries in private, cannot even tell his wife. Denies anything is wrong. He won’t consider medication because that will mean he is weak.
Part of my helping him is to help him to accept that he has depression. Part of it is to help him get the right support, the right counsellor and to heal. It is only then I can assist him with his workplace issues.
All of this is hugely triggering for me. I am sure there are other advoctes who experience exactly the same thing, triggers. Part of my being able to help this man is because I have been there.
I worked at a place that under-valued me. I worked at a place where managers committed to do things but would not follow through. I worked at a place where managers refused to respond to emails and follow through with promised actions that they had agreed to. You know, it was always my fault, no one would accept that the managers were behaving in a way that made it impossible to do my job.
When I was assisting this man I had huge flashbacks. I began to hyperventilate; my chest began to constrict. My body became tight and ached. I began to sweat. It took all of my reserves to hold it together.
I write this, not for any sort of sympathy, I write it so that people can be aware of how their behaviours impact on others. We live in an enormously audist world, where people who are deaf have nearly all the responsibility to fit in.
People who are deaf, indeed most people with a disability, have to do all the adjusting. The have to jump through hoops to get support from the NDIS. They have to jump through hoops to get Australian Hearing to accept that their hearing aids are not working. They are excluded because it’s easier to talk on the phone rather than adjust one’s own behaviour to create an inclusive environment. They are blamed for anything that goes wrong at work.
And all because of an audist and ableist society that refuses to change. Some do and that is great but all too often ableist and audist people make it OUR fault because they are ignorant and, in many cases, just cannot be bothered.
And every day they trigger us. They cause us stress and exclude us because we are not like them and they think we should be. This is why mental health issues are higher among people with a disability than others … And the behaviour of this ableist and audist society makes us sick! You don’t believe me? Read this –
It’s not fair, Australia needs to do better.