The Sad, Weird and Wonderful World of disability

I have been around the disability world for a very long time. I have seen some weird stuff. I have seen some sad stuff. I like to think that over the years the world has come a long way for disability inclusion. I like to think that attitudes have changed. I tell myself every day that things are better now and I should be thankful. Yup, thankful!

A few years ago I was asked if I needed a lift home. This was because the person that offered thought that people who were deaf could not drive. I find this mildly amusing at best. Except that the person offering had worked in the disability employment sector for a decade. Then there was the hearing woman that asked me, hand on heart, how my deaf mate could laugh if he could not talk. Or the instructor of a professional development course who told me I was responsible for bringing my own interpreter because people in wheelchairs bring their own wheelchairs. Not forgetting the professional disability event organisation who offered me a free $2000 registration on the proviso I provided my own interpreter for a day long conference. They reckoned this was smart because paying $900 or so for interpreters would mean that their business would not be viable.  You do the maths.

But it’s better now isn’t it?

Then I read online last week that prisoners who were sex offenders were being used to care for other prisoners who had disabilities. Perhaps we should consider the fact that sex offenders can become better people. You can do that if you like. Me? Well I like to think that people have more common sense than to put people who are already vulnerable and less likely to be able to defend themselves in situations where they can potentially be abused. Maybe it is just me overreacting. Read the article at the link below and be the judge. If true; what were they thinking??

Calls to scrap scheme that paid sex offenders to care for prisoners with disabilities  

This week I was asked to interview for a job interstate that I currently do. I really could not have relocated at this time. I have kid doing year 12, a house to fix, a house to sell and the like. I thought why not do the interview, just to put my face out there if a similar job comes up later when I am in a better position to move.  You know I have been in this role as a senior supervising numerous staff for nearly two years. I’ve been told I am a bit of a gun with the planning process. Without reservations I am happy to say that I am pretty good at what I do.

I just would have thought an organisation involved in the biggest disability program in Australia would have known better. Making an ASS out of U and ME as they say.

Anyway 12 emails later I had managed to educate this new organisation as to how to book interpreters. This was after I requested captioning for the online interview. They preferred interpreters and notified me that that was what they were booking. I wasn’t too fussed but did wonder if they understood the principles of choice. I just would have thought an organisation involved in the biggest disability program in Australia would have known better. Making an ASS out of U and ME as they say.

So anyway they sent me a link for a Skype hook up. The link was on Skype for Business. I was a bit worried as I was linking up on my general Skype account. I sent them an email about 45 mins prior to the interview and said I might have trouble linking up. They replied almost instantly saying that they would get their IT guy onto it.

They had no idea I had connected. So said as gently as I could, “HELLO”

Anyway in the meantime I worked out what to do. Sent them an email and said I had fixed it. I don’t think they read the email because I dialed in and connected. There was no video but the interpreter could hear them on the other end chatting. Apparently they were saying that the fact that I had not connected showed that I lacked problem solving skills. Apparently I needed to have been more prepared and should have identified potential problems beforehand. I watched the interpreter translate what they were saying with amusement for about 45 seconds. They had no idea I had connected. So I said as gently as I could, “HELLO”

The silence was golden. After a good 15 seconds someone piped up. “Who am I talking to.”  I confirmed that it was I. We linked up by video. Throughout the interview I demonstrated to them what thirty years of experience means. And then they asked me if there was any special funding to cover my reasonable adjustments.

I was very honest. I said there is JobAccess  but it doesn’t go far and that if I were to work for them there would be additional expenses to cover my interpreting and that it was not cheap. It wasn’t a very good link but the facial expression on the interviewer when I said this was priceless.

So anyway the interview came to an end. They sent me a link where I had to show my mastery of Office programs and my typing speed. There were lots of questions relating to Excel. I’m not good at Excel. So anyway I did the test as well as I could. Sent it off and waited. A day or so later I received an email that they wouldn’t be processing me further.

I emailed them and confessed surprise. I said you wont find many who have 30 years of experience and who have been successful in the role for two years. I pointed out I was proficient in all the systems of the job too. Apparently I wasn’t progressing because I am not good at Excel, and being good at Excel is mandatory in this organisation. They asked me to consider other positions as they arise. I promised I would and that I would do a crash course in Excel in the meantime.

They professed that they were mightily impressed with my knowledge and abilities but being good at the job is not as important as knowing Excel apparently.  I will leave the reader to be the judge of that one.

And then there was the person that seriously asked if Post It notes as a communication tool could be considered as an alternative to interpreting. And then suggested that perhaps a voice recorder might help. Skillfully the situation in this case was used in a positive way to educate the person concerned. But Post It notes? Just way to weird for me to process.

So that was my week in disability. Just way way to weird! And there was me thinking we had progressed.



The Lads

I became a groupie. And it was for theatre. Me, a self professed loather of theatre. People prancing about on stage and overacting has never been my thing, I often say, only half joking, that if it doesn’t have a ball it is not worth watching. But Jodee Mundy changed that. Her show, Personal, about her life as the one hearing person in a Deaf family, enthralled me so much that I even flew to Sydney with my wife to watch it again at the Sydney Opera House. It enthralled me because it was brilliant and clever. I think it also had such a huge impact on me because it hit very close to home.

For those that do not know me, I and my wife are both deaf. We have three strapping lads aged 21, 18 and 17 who are all hearing. Jodee’s theatre performance got me thinking about their life. It got me thinking about the challenges that they have had to face growing up with deaf parents. The challenge, as I see it, is not so much the deaf parents but the attitude of others.

You see my kids are easygoing. They believe people are people and that we are, or at least should be, all equal. I mean my middle child rushed to enrol to vote so that he could vote yes to same sex marriage. My eldest wouldn’t shut up about it on Facebook insisting that he could not understand objections to it. I am very proud of them for the young men that they have become.

One of the things that Jodee’s play highlighted to me was that she became a bit of a sideshow freak to others. At six years old she was interviewed by her teacher in front of her class about how her deaf mum and dad adapted to life in a hearing world. She was asked how they used the phone, how they watched TV, how they heard people at the door and so on.  She then had to explain this to everyone. She was just 6 and did a very passable job.

It made me wonder how their teachers, their peers, their soccer coaches and the like all reacted when they had to, and still have to, disclose that their parents are deaf.

The point is; how many other kids are asked questions like that about their mum and dad? It made me wonder how my kids coped having to disclose that their mum and dad were deaf. It made me wonder how their teachers, their peers, their soccer coaches and the like all reacted when they had to, and still have to, disclose that their parents are deaf. I mean, even now, when there are parent teacher interviews they will ask the school to book interpreters on our behalf. It is a lot for a kid to have to deal with.

It must be painful for them to sometimes watch us struggle in a hearing world. I mean I am a shocker. I have spent my entire life bluffing as have many of us. I’ve seen them cringe when I have misunderstood a shop assistants question or not heard it at all.

I’ll be fiddling around in my wallet and Jo Checkoutperson is asking me if I want a receipt or not. Of course I don’t answer. Tyler will be with me and probably as embarrassed as hell has said “He is Deaf”.  That explains a lot of the wide eyed and weird looks I get  when I finally make eye contact with Jo Checkoutperson. It must be mortifying for my kids sometimes.

It must have been hard for him to have to stand back and often watch us muck up.

The eldest, Aden, is a bit of a control freak. When he was younger he would try to save us all the time. Many a time we had to tell him not to interfere. We didn’t want him taking on responsibilities that a little kid should not have. Sometimes he would jump in and try to communicate for us. It must have hurt that instead of thanking him we would tell him to back off. That it wasn’t his responsibility. We would emphasise to him that as adults we needed to deal with things. If we made a mistake it was our problem not his. It must have been hard for him to have to stand back and often watch us muck up.

As parents Marnie and I wanted our kids to be kids. We never wanted them to interpret for us unless it was absolutely needed. This was especially so when they were young, As they got older we asked them to help a little for some things. Like those voice calls to our mobile or a call to someone just quickly to let them know we are on our way.

For example the phone rings – “Fin can you take that?”  Fin does and chats away to whomever it is. Walks around the room not telling us anything while he chats away.  Meanwhile Marnie and I are looking frantically on wondering what’s happening. He hangs up and we enquire what it’s about. ” Just some telemarketer.” will be his answer. It is often anti-climax and hugely disempowering if you are deaf. We try to ask for this assistance as little as we can but the lads are always willing to help if we do. (Mind you we sometimes get teenage attitude when we do ask 😀 )

And I wonder if they hear hurtful things said about us by others. You know comments like, “Deaf, parents, how sad.”  I know my kids have got angry more than once playing soccer with me because someone will have said something nasty behind my back knowing I cannot hear them. I have had to admonish people for trying to pass personal messages to me through my kids rather than communicating to me themselves. I wonder how many kids have teased them about having deaf parents and they have just had to turn the other cheek. That is the kind of world that we live in. It is not always pretty and people, especially other kids, can be cruel,

Possibly I will never know. My kids are not Jodee Mundy. They don’t have the capacity, nor the desire, to lay their souls bare like she did. What my kids are is top blokes. They all men now. They have a great sense of social justice. They accept people for who they are. They abhor discrimination. They despise racism. They believe in equal rights. They take everything in their stride. In short they are well adapted and brilliant young men.

I and Marnie are immensely proud of what they have become. We are especially pround of their ability to see the funny side of life. A sense of humour is a must, especially living with me. This sense of humour is best demonstrated by this video made by Aden about dumb things people ask him about having Deaf parents .. Enjoy, especially the last part.

To Aden, Finlay and Tyler, even though the first two are unbearable slobs, thank you for who a you are. Don’t change!

Personal – Just Wow

Deaf on TV, theatre or film has never translated well for me. Usually it is some rubbish romance story about deaf meets hearing and love conquers all  like Children of a Lesser God. I hated this movie and made myself unpopular by insisting that Marlee Matlin was irritating and overacts.

Sometimes deaf portrayals are just absurd. Like VJ of Home and Away having a cochlear implant and  flying to America. There he was mysteriously cured and did not need it anymore. Or there is Tribes on stage where the hero is a super lipreader. He bluffs his way into the policeforce to solve crimes. Shamefully I cried watching Mr Hollands Opus, and look at what melodramatic tosh that was. I have no desire to see any of the latest deafness offerings either. This is despite the Deaf community being in raptures about them. ( I mean Aliens apparently communicating through cochlear implants, who woulda thunk.)

So it was with some trepidation that I attended Jodee Mundy’s stage performance of Personal. This stage performance explores her life as a hearing person in a Deaf family. I expected more of the same.  I could not have been more wrong.

I was not sure how this story would unfold on stage. I was even more perplexed when I saw the stage. There were about six large boxes set strategically around the room. On the stage you could see coloured tape. Presumably the tape was placed so that actors would know where to stand. But this was a one person performance. The complexity of the stage set up intrigued me.

Jodee enters the stage wearing an inconspicuous blue outfit with simple white sneakers. She looks around at the audience to acknowledge all who are present. Most she would have known as members of the Deaf community or the theatre fraternity. She smiles broadly and begins her tale.

She uses Auslan to sign a part of the story and then voices for the hearing people in the audience who cannot sign. She reverses the order, voices then signs. In this way she introduces her story and her family. As I watched I thought to myself that we were in for a long night if this was how the whole performance was to be conducted. And then the lights dimmed.

In the background Jodee can be seen frantically/gracefully rearranging those mysterious boxes. These boxes, as it was soon to become apparent, were to be the prime means to convey her tale. Onto these boxes were beamed old films of Jodee’s family, Jodee as a young girl, trips to the beach, family dinners and so on.

Through rearranging the boxes pictures would change. They would change from small, expand to large or shrink to single shots. It was fantastically choreographed. The boxes were a fascinating sequence of film, light and sound that were all used to convey Jodee’s story.

Sometimes Jodee would hold the boxes aloft so as to capture parts of the film. I am told that each box weighed 13 kgs. Jodee herself is just a wee waif. I am amazed at her strength. I am told that to get the films, light and sound all working in proper sequence there were more than 700 moves programmed into the computer.

In one sequence Gavin, her brother, is being beamed to one of the boxes. Through clever use of timing and questions Jodee and Gavin discuss her life growing up as the only hearing person in a Deaf family. Jodee would come  home from school and her parents would have a list of phone calls that she had to make for them. At first it was just a few. As Jodee became older the list grew and grew.

It became clear that as a child Jodee had to take on an enormous amount of responsibility. She would be talking to adults and conveying adult concepts to her parents. Sometimes her parents would be anxious and want to know what the hearing person was saying. They would be demanding and for Jodee this was likely frightening.

One can only imagine how traumatic this could have been for a young child. This young child having to deal with adult concepts, adult language and then having to ensure her deaf parents and the hearing person understood each other.

She asked her brother through the medium of the box whether he thought this premature responsibility harmed her development and impacted her as an adult. Gavin thought about this for a while and said with a wide grin – “Well it made you a better interpreter.” And we laughed. Jodee didn’t want sympathy. Her subtle humour throughout the performance was a joy.

For me the best parts were the stories of how growing up in a deaf family that led to behaviours and gains. In her first share house she was known for being noisy. Growing up in a deaf household she was used to being as noisy as she liked. She told the story of how she, as a 15 year old, sneaked her boyfriend into the house while her parents sat unknowing and unhearing in the front room. It reminded me of my own kids who would often tell the McDonalds checkout person to get a large coke when I was asked what size I wanted. They did this knowing that I had not heard the checkout person.

The clever thing for me was the use of  the light show to represent how Jodee was torn between the Deaf and hearing worlds. On the boxes were beamed a series of lines and squiggles. Jodee would contort and align her body to fit in with the rapidly changing shapes of the lines. When they curved she curved and when they straightened she straightened. Her face would contort into concern or seeming internal pain as she tried to fit into all the different shapes that the light formed. It was both graceful and haunting at the same time.

Bravo Jodee, not only did you make me enjoy theatre but you also profoundly moved me. It is simply compelling theatre and not to be missed!

Jodee will be performing Personal around country Victoria and in Sydney at the Sydney Opera House. I believe there are performances in Paramatta too. If you can, I urge you to go and see it – You will not be disappointed!

Click on the link below to find out where she will be performing.