I am a proud disability advocate. I have always prided myself on being able to say the things that no one else will say. Too often in life we people with a disability are expected to suck it up. We are expected to be grateful for what we get. We are expected to adapt and adjust to a world that simply refuses, for the most part, to acknowledge our existence.
It is always us that is expected to adapt. In the case of the deaf, we are expected to hear better. We are expected to go through painful surgery to do so. We are expected to pay through the nose to hear better and fit in with the norm. We are expected to organise everything around our access … because it’s all our fault.
Even with the NDIS we are expected to accept what is given. We are expected to do so in the name of sustainability. Currently if we have 65db loss in our better ear NDIS is trying to tell us they won’t help us. A 65 Db loss will mean we can’t hear speech and will struggle. No matter, our needs don’t count cos NDIS has to be sustainable. We, of course, have to adapt. Sorry folks, hearing life rules.
I have been ashamed of myself of late. I have been ashamed of myself because I have been grateful. I have been grateful for support. Grateful for money for interpreting. Grateful for money for captioning. Grateful for my job.
For a while I forgot my own value. I forgot what I contribute. I forgot how much knowledge and value people get from my experience and input. I forgot that I matter.
I began to make excuses for the people I worked with. I began to compromise too much. I began to accept mediocrity.
Worse,I began to make excuses for the appalling behaviour of others. I began to say things like … “ … but they are so good and supportive of me.”
I forgot just how good I am at my job and just how much people get from my input. I began to believe I needed others more than they me. The opposite was, in fact, the truth.
And then something changed. An advocate reminded me that everything needs to be reciprocal. He reminded me that it’s not just us that need to adapt but it is the non-disabled that must adapt too. He reminded me that it’s about co-design. This is where the world and systems should be designed with equal input from people with a disability. I already knew this but for a while I forgot because – “They are so good to me.”
And then they began to exclude. It is done in a subtle way. They would impose on me systems where I could not fully participate. They would insist on teleconferences. They would expect me to adapt. Indeed they expected me to arrange all access needs.
I didn’t matter .. I was a burden. If I wanted my knowledge and experience to count I had to do everything to ensure I could participate. No one else had any responsibility except me.
It came to a head when
I was interviewed for a temporary managers position. “8.30 am tomorrow Gaz” …
I waited for the boss to tell me that she had booked interpreters. It did not come. I sent the boss a rather sarcastic message … “ have you developed super powers of communication or have you booked interpreters for the interview?” She replied .., ” Please book interpreters.”
It was about there I knew I had no chance . Why? Because interviewing me was an after thought. If my boss truly valued me she would have made the interpreting arrangements herself.
I got really angry. I was angry because I was being undervalued. I was just an add on. An inconvenience that did not matter.
And then a colleague was treated unfairly. She had been treated unfairly for sometime. I made excuses for the perpetuator. ” … oh but she is so good to me”, I would say.
I had begun to be grateful for being included. I began to think that I owed people. Well cop this. I owe people nothing. The knowledge that I have, very few people possess.. If communication issues exist it’s because two people can’t communicate and any strategy implemented is for everyone ..: not just for me. I owe people nothing.
I became something that I find abhorrent. I became a suck up. I was disgusted with myself.
Then and there I decided I could not condone the treatment of my colleague any longer. I wrote a long email to the powers that be outlining the abuse of power I had witnessed.
It was a healing and cleansing moment. But most of all I was able to support my colleague who had been badly treated. One must never be silent when they witness abuse of power. It must be challenged always.
Let me say this now for the final time. What I have to offer is of extreme value. That interpreters or captioning are needed is because two people can’t communicate .. not just me.
That means everyone must adapt and change. It should not just be me doing all the leg work.
That was my reawakening … I am back and I matter. I owe the world nothing. Watch out world.