The Art of Inclusion

In 2016 I got a new job. It was scary for me. It was scary because for the best part of 12 years I had worked very much alone. I was part of a national network of disability workers. The basic aim of these workers was to make employment and education more accessible for people with a disability. I covered vast regions. At one time, my region covered almost half of Victoria. Although I was part of a big network, I was the one worker in my region. I had complete control of the budget. Being deaf, I needed access like interpreters or captioning and I could just organise these as required. I had free reign. My manager trusted me and I just got on with it.

Naturally I had to have meetings and the like with the community and stakeholders such as with Government groups and steering groups. No drama because what I needed I got. Each morning when I came into work there was just me in the office. I had no team to worry about. I didn’t need to lip read anyone. The network communicated with me by email and no one phoned. Every couple of months I caught up with my manager and we would review where I was at. I loved it.

But after 12 years it was time to challenge myself. For many years I had been a strong supporter of the NDIS. I decided it was time to put my money where my mouth was and I applied for a position as a senior with Local Area Coordination Services at the Brotherhood of St Laurence. After a long drawn out recruitment process, I was successful. I very nearly did not take the offer. I loved what I was doing and I had freedom to be innovative and creative. I had complete control of the direction of the program in my region. Why would I want to give that up?

In the end, I decided it was time to challenge myself. I accepted the offer and headed off to this brave new world of LAC services. It was going to be different. For a start, instead of having my own office, I was going to be in an open plan office. I was going to lead a team of Local Area Coordinators. I was going to have to be up and ready for communication at any time of the day. Many years ago my hearing flatlined so when I lipread I do just that. I have no access to sound to help me fill in the gaps. I was under no illusion it was going to be tough.

The first two weeks were fully in training with interpreters present the whole time. Interpreters or captioning. Then the third week came where I had to go into the office and start the job proper. I can tell you I was shitting myself. I had no idea what to expect.

Of course there was no way I could have an interpreter with me all day. I was going to have to communicate. I met the team and as is always the case there were those easy to lipread and those who were not. I sat at my desk and started the mandatory online training. After ten minutes, there was an impromptu meeting called. This was common in these early days. You see at that time the NDIS were experiencing a severe computer glitch. We needed to be updated regularly. There were policy directions and advice coming. So at anytime the manager would gather us around to update us. SHIT!

At this first impromptu meeting I understood nothing. This was not going to work. Especially if I was to manage a team. I needed access to information. I went straight to the manager’s office and told her these impromptu meetings were not inclusive and asked if there was a better way to do it, like updating people by email. She said no; this was how it was going to be.

Bloody hell. A second impromptu meeting was called. At the end of this meeting I had a Skype chat with a colleague and asked her what the meeting had been all about. She was happy to fill me in. But for me this was just a stop gap. I needed a better way. I needed ready access. I knew I could not have an interpreter with me all the time. To be frank, I was scared shitless because after 12 years of being in complete control I now had none. I thought momentarily of calling my old boss and asking if I could come back. But no; I am no quitter.

Then something wonderful happened. A third impromptu meeting was called, Silently, my colleague Nip sat next to me and opened up Word. Completely unasked, she started to type out what everyone was saying. I can tell you I wanted to pick her up and hug her. Instead I just said thank you. It was very much appreciated.

But it didn’t end there; the team were switched on. Every time an impromptu meeting was called someone would volunteer to be be my captioner. All of this happened without me asking. I can tell you that I went home that day and sat silently in my room. I had a little cry. It’s hard to explain how stressful it was but it really was. I gave thanks to my workmates who were so willing. I guess working in a disability organisation one would think it would be second nature, but really it isn’t. I was very lucky indeed.

I know this because once when working at a Deaf Society, of all places, I asked the CEO for interpreting. She didn’t refuse but she said she was disappointed because in the interview I said I was a good lipreader and could cope in most situations. No, I am not kidding. Knowing this, I knew how rare the response of my work mates was.

On the second day I spoke to the team. I thanked them for their assistance. I gave them a bit of background of how a deaf person processes information. I spoke about how important overhearing was. Overhearing is where colleagues are talking about an issue and just because you are there, you hear what is being said and learn from it. Oftentimes you can get involved in the discussion and add your views or ask questions for clarification. The Deaf professional in a hearing environment has no access to this valuable information and much learning is lost. I asked for my team to help. I said that if someone was talking about something that would be important for me to know, could they please update me?

Something wonderful happened from that little chat. Not only would the team update me on important info but they would involve me in the social chatter. Some one would text chat me through Skype to let me know what people were chatting about. It might be about someone’s wedding. It might be about someone’s weekend. Whatever it was they would often Skype me so that I was included in the chatter. Maree asking if anyone ever showers with their dog and Nip Skyping it to me will always be my favourite.

Just imagine yourself focused on writing a report and someone Skypes you a message like that. I was really blessed.

And you know, even when we had one on ones, the team did all they could to communicate with me. Sometimes this could be hilarious. Like Leila signing “Humping” when she was actually trying to tell me and another Deaf colleague she was going to the gym. Or the legendary Maree trying to tell me there was a group and accidentally was signing vagina instead. Mind you I had my own embarrassing moments. Like when Janna was trying to talk to me with a mouth full of food and I uttered the immortal, “Swallow lady, swallow”. The look on her face was absolutely comical.

This was my workplace for the last two and a half years, It was a place I truly looked forward going to nearly every single day. Recently I accepted a position for six months to further my knowledge and it was with great regret I had to leave my work mates. Right until the end, they made sure I was part of the team and included. They put up with me and my bad jokes. They put up with me and my noise. There were so many times that I would not realise someone was on the phone and everyone would be waving to me to be quiet because I was too loud.

But I was lucky. A hearing workplace for a deaf person can be a soul destroying place. It can be incredibly lonely. So to the Brotherhood of St Laurence who made sure I wanted for nothing and my awesome Whittlesea teammates, I say thank you. Words are really not enough. See you in six months.

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My Nightmare

I once was the victim of subtle bullying at work. It is hard to describe how it happens. There were two of them. My department manager and my direct supervisor. Together the two of them conspired to make my life hell. My line manager was incredibly patronising, Each morning she would come to my desk, veer through the glass partition, grin widely and wave to me as if I was a child. It was infuriating. I ticked it off to just her being uncomfortable with my deafness. I now think it was just part of a tactic to systematically devalue me.

The bullying was not obvious. It was sly and cruel. For example the department manager would deliberately place roadblocks to prevent me completing my work. She refused to approve surveys for distribution. She would promise to do so but not do it. This would prevent me from completing my research. She did this for a year. My direct line manager would then pressure me to beat deadlines that I could not because the department manager refused to release the surveys. My line manager would claim that I was lying and making excuses. No matter that I provided her with copies of 51 separate emails requesting approvals from the department manager. I provided nearly as many from the department manager stating that she would do so within a week.

One day my line manager asked me to provide her with details of the social, medical and economic models of disability. This I did. She would ask me what I felt were key components of a disability action plan and how I would set the objectives. She would ask me for contacts for consultants for whom she could use to run workshops  and consultations. I dutifully obliged. Come the day of the release of the disability action plan she had used virtually everything that I had provided her, word for word. I asked if she was going to acknowledge my input. She laughed sardonically and said … ” No…its all mine.”

One day I won an award as part of a working group. I received a certificate for this. I took a photo of it and posted it on Facebook with the line – “I wonder if my boss will offer any praise for this,” A few days later my line manager  approached my desk and handed me a letter. I was to be disciplined for not completing the research and undermining the management. They had been monitoring my Facebook and they provided me with a copy of the offending post.

At this point I lost it. I ran down to Human Resources and stated that I wanted to make a complaint. I broke down and sobbed. I continued to sob for many hours. I phoned an interpreter friend to come and help me. HR were organising for me to see a counsellor through EAP. They managed to get an appointment.  I texted my wife and told her I had broken down. She came immediately. The interpreter worked pro-bono for me at that first counselling session. I went home and told my wife there was no way I was going back to work there. She said that I didn’t have to. I sobbed all night. I was a mess.

I sobbed all weekend. It was so bad that my family took turns to hug me. My wife would hug me and need a toilet break and Tyler would take over. I would go sobbing out to the deck and Aden would follow and give me bear hugs. It was hell for me but it must have been worse for them.

The breakdown happened on Friday and by Sunday I was still a sobbing mess. I told my wife I needed help and she drove me to the GP. Because everything happened so quickly we could not get interpreters. My wife, who is deaf, had to interpret. The Doctor was from Middle East Asia and had a thick accent. My wife struggled to understand him and ensure I understood his questions. This is what it is like if you are deaf and have mental health issues that need support urgently. Family members have to take on the load because the system just cannot provide the interpreting support that is needed at short notice.

The Doctor gave me a month off work. He gave me some valium to calm me down. He offered me anti-depressents which I refused at the time. In time I calmed down. In moments alone I would cry. I would take my middle son, Finlay, to hospital for his treatment and I would basically sit in a corner crying every hour. It was an awful time.

About four weeks into this I was contacted by the police. I had apparently, while helping a friend move house, sideswiped someones car mirror. This was with a rental truck. I was unaware that I had hit the car. But getting the news was the straw that broke the camels back.

If I was bad before I was completely gone now. I howled and screamed, I wanted to punch walls. I would raise my fist to smash a hole in the wall and restrain myself. I wanted to just get in a car and drive away, as far away as possible. In the middle of all this were my family watching in horror. My wife phoned Lifeline for me through the National Relay Service. She watched as I told them I was planning to abscond. She dashed around the house and took all the car keys.

In the end I ended up at hospital. Again my poor wife was the interpreter. Interpreting the nurses. Interpreting the doctors. We requested an interpreter but nothing was arranged. My wife was by my side all through the night. She would have been worried and stressed while at the same time, under great duress, trying to be my interpreter.

Early in the morning she returned home for a time. She needed to change and get the boys off to school. They actually didn’t go, after seeing their father like that they were in no fit state to do so. While she was gone the social worker visited me. She was great except she had cerebral palsy and severe speech impediment. I could not understand a word she said. Eight or nine hours in I was still without an interpreter. I understood only four words the social worker said – “You need a rest.”

My wife returned. The initial plan was for me to be admitted  to hospital. Eventually they sent me home and said the mental health team would visit my home the next day. We asked them to book an interpreter for this. They promised to do so but never did. Again Marnie, my poor wife, had to interpret.

This session went on for a couple of hours. At the end of it all I was given drugs and the mental health nurse was to visit me twice a week for the next two weeks. We asked that they book interpreters for this but they never did. Fortunately the mental health nurse was easy to lipread.

This is what it is like today in Australia for people who are experiencing mental health crisis. When it happens there is no response strategy to get interpreting support or any communication support in place. Families are expected to fill the gap. Often these family members are also deaf. Those without support just have to communicate themselves by hook or by crook while under great strain. It is awful.

I thank fuck for my family in this time. Without them I may well be dead today. I thank fuck for interpreter friends who helped me out. Most of all I thank fuck I have the language skills to at least understand what is happening because for many deaf people experiencing mental health crisis this is not the case.

I got lucky. I am sure others have died because they were not as lucky as I. This is happening in Australia today. It is not good enough. It has to change and now.

 

 

 

Good Health

Few years back I had a friend who self admitted for mental health issues. She attended the emergency department of a hospital and requested an Auslan interpreter to speak with the Dr and mental health people. The hospital staff had no idea what to do. My friend was at her wits end.

She began to text my wife and I. Rapid fire texts every two minutes or so. She expressed her frustrations to us. She just wanted treatment so that she could get better. The hospital staff had an emergency number for booking interpreters and tried their best to contact that number to no avail. I have many contacts in the interpreting fraternity. I contacted one interpreter I knew who had experience in mental health. She said she could be available in an hour or so. I used my contacts with an interpreter booking agency and booked my interpreter friend. I sent a text to my friend to show the nurse. The text explained to the nurse how to call to confirm booking for the interpreter. Although this was against hospital protocol they booked anyway. At least in the short term this meant that my friend got interpreting and peace of mind. Kudos to the nurse because she continued to communicate with me via text to get advice as to how she could communicate with my friend in the interim. This was just the beginning of a long drawn out saga. At one stage my wife spent four hours translating a mental health questionnaire into Auslan for my friend. Interpreter bookings promised did not happen.  It was not for want of trying. It was just that the hospital processes were so unclear no one knew what to do. Suffice to say my wife and I traveled some 160 kms a day to the hospital for seven days to ensure my friend got the support that she needed. We worked with the doctors to ensure that they understood the communication issues and to ensure our friend was disadvantaged as little as possible. Of course somewhere in Australia what happened to my friend will be happening to some other Deaf person. It might not be for mental health reasons. It might be because they have had an accident. It might be because they have had a heart attack. It might be because they or some loved one has been diagnosed with cancer. Whatever it is I guarantee you most of the time that whether they are the patient or the carer that the Deaf person will be stressed. They will request interpreters and mostly be denied. They will request interpreters and doctors or nurses will insist that they try and lipread or will write brief and entirely unsatisfactory notes. At worst they are completely ignored while medical professionals just converse around them. Scared and worried about what is happening they will be denied access to essential information. Children, young children, will be asked to convey complex medical information that they are not equipped to convey. It is hell and this will be happening multiple times in Australia today. It is unfair and scary and Deaf people deserve better. The system is broken on so many levels. Emergency booking processes are inadequate. Hospital staff lack awareness. Supply of qualified interpreters for complex medical scenarios cannot meet demand. Yet it seems to me that just one person in Australia is making a noise about it and copping abuse for her trouble. So much that she fears speaking out now for the abuse she has received. The system needs fixing and we need to talk about it. Because if we don’t, to misquote Einstein,

We who remain silent are guilty of complicity …..