The Helen Keller Myth

kellerThere are many videos of Helen Keller on YouTube. They have a myriad of inane titles – “HELEN KELLER SPEAKS OUT.”“HELEN KELLER IN HER KITCHEN”  – “HELEN KELLER VISITS INDIA” – “HELEN KELLER AND HER DOGS”. It is almost as if our Helen was the original reality TV queen. What is cringe-worthy is that they all seem so staged to inspire. If they were made today I wonder what disability activist would make of them. Stella Young would weep in frustration.

I was sent a link for an old Helen Keller video that is on YouTube. I watched about 20 other similar videos and ironically only one of them was captioned. Some had the YouTube voice generated captions which are no access at all. I encourage you to watch, not for the accessibility of the captioning, but for the fun translations. Like the one below.

Keller
Screen shot of Helen Keller showing YouTube absurd voice generated captioning which reads, ” Million cannot forty  years we really have been in June”

For those that do not know, Helen Keller is a famous woman who was deafblind. Born in 1880 she became deafblind through illness at just 18 months old. It is said that she went languageless until she was six or seven years old. Around this age her mother heard of the work of Alexander Graham Bell, inventor of the telephone and famous for his work educating the deaf. Bell introduced Helen’s mother to Anne Sullivan who set about teaching Keller to communicate with great success.

Apparently Sullivan struggled for a time to get Keller to communicate. Keller, apparently, had a few rudimentary home signs but that was all. As the legend goes, one day Sullivan held young Keller’s hand under running water and spelled the letters water into her hand. The penny dropped. Any one who has watched the movie, The Miracle Worker, will remember the awakening scene when Keller suddenly associates the symbols in her hand with the running water and screams WAH WAH!!!! The rest is history.

Anyway, as I was saying someone sent me a link to a video. In this video our Helen is meeting dancer, Martha Graham. Being the miracle that she is Helen is enjoying the music. She places her hand over Martha’s face and feels the vibrations of her singing, even singing out loud the last line. She puts her hands over the drums while the drummer is playing and feels the beat in the very air. There is a dancer moving his legs  and body gracefully as Helen feels him up.  Its actually quite creepy. Watch for yourself below.

The interesting thing is that Keller spoke using her voice. This is interesting because Keller lost her hearing at 18 months old, this would have been well before she had mastered any speech. Being blind she would not have been able to lipread and she did not get any formal education or therapy until she was six years of age. In one of the videos Keller’s teacher, Sullivan, explains how she taught her to speak.

Apparently Keller’s thumb was placed on the speakers throat where she felt the vibrations. One finger is placed on the mouth to feel how the words are shaped by the lips and another is placed on the nose, presumably to feel the nasal sounds.

There is a wonderful video where Sullivan demonstrates how this was done with Keller. The last line of the video – I AM NOT DUMB NOW, spoken by Keller, has to be one of the first ever examples  of inspiration porn. Watch it below.

One wonders with Keller what is the myth and what is the reality. With her speech she clearly is deaf. Being deaf myself I really can not assess the clarity of her speech so I asked two hearing people to listen to her speaking. It is apparent that Keller’s voice was not easy to understand. When she spoke a person would translate her speech for the audience. Fascinatingly, one of my hearing friends said that even though Keller was hard to understand, she had an accent. My friend said it made her think that she was a person that had been previously hearing and therefore had developed an accent. For myself, watching the video and seeing how the interpreter just translates Keller’s voice with ease, I wonder just how much is actually contrived.

Eerily, some Helen Keller fanatic put together a video of her speaking. It was an animated video that had been put together using computer software called Crazy Talk.  I have no idea what she said and can only assume that the maker of the video wanted to inspire us by showing us how Helen Keller would look if she spoke. I tried using the voice generated captioning feature to get some sense of what Keller was saying but gave up when the caption read – “WANT WONT BOO BOO BOO OF MOO” No I am not joking, that is an actual voice generated caption. You can watch this really CREEPY video below.

I have always been a skeptic of claims about Helen Keller. For me she was a travelling side show. I have no doubt that her minders ensured that she had the best life possible and that as a result Keller enjoyed a very fruitful life. But there is always this cynic in me that says that Keller’s minders were in it as much for themselves as they were for her. In other words their motives were not altogether altruistic.

It seems that I am not the only one. Calvin Klavan claims that Keller was a fraud. Klavan wrote a 675 page book in 2010 titled the Keller Fraud. In his book Klavan claims that Keller had an, “alternate existence” in which she was neither Blind nor Deaf and where she, “..was a con-woman exploiting American sympathies.” Bizarrely Klavan actually claims that Keller’s real name is Kelly Heller and that she was actually a jazz musician and African-American. ( http://glossynews.com/top-stories/201004011105/historian-casts-doubt-on-helen-keller-legacy/ )

Me thinks Calvin may have had a screw loose. But what is actually fact and what is actually myth about Keller we will probably never know. She was clearly very stage managed and probably the motives that some of her minders had were far from pure. Indeed she had her eyes removed because one bulged and was a bit unsightly. The operation was purely cosmetic and after the operation she appeared in public with glass eyes. The decision was made because she was apparently a very attractive woman and the removal of her eyes enhanced her appearance.  Perhaps there was a lot more show than people are willing to let on.

In the interest of balance I urge the reader to read Ozick’s essay – WHAT HELEN KELLER SAW – Ozick is far kinder than I to Keller’s legacy.

Brainless

brain
Young baby with hearing aids. heading reads -These are not my hearing aids. Caption to picture implies that only through the use of hearing aids can the brain develop

It is 1880 in Milan. The date is is September 6th. Delegates from around the world have gathered to discuss deaf education. For five days they meet and deliberate and at the end of the conference they declare sign language is bunk and that oral methods must prevail. It is said that the Milan conference was supposed to focus on a variety of issues relating to deaf education including sign language. Instead the conference was hijacked by the oralist and pro-sign instruction delegates were more or less silenced. At the end of five days eight resolutions were passed that declared that oralism was the only way and that sign language was the enemy of deaf people. Sign language said the oralists,  prevented deaf people from assimilating with society.

The consequences of this conference were severe. Not the least that it created a class of deaf people that were largely languageless and illiterate. For many years after the conference deaf kids were forced to speak at whatever cost. Those deaf students with more profound hearing losses struggled greatly. These young deaf people were largely hidden from view. Those with less profound hearing losses, who had usable hearing, were held up as shining examples of the success of oralism. Meanwhile oralism was creating a class of young deaf people who were illiterate, languageless and who were to struggle to fit into society for the rest of their lives.

It is a period of time that decimated the Deaf community. It is a period of time that caused great anger among the Deaf community. This anger remains to this very day. It is said that if it was not for the likes of Gallaudet and Veditz, both who steadfastly refuse to follow the resolutions of the Milan conference, that sign language would now be obsolete. But deaf people are resolute beings. It is a testament to their determination that not only did sign language not die out, that it actually prospered as did the Deaf community. But make no mistake, the Milan Conference did immense damage.

Much has been documented by Deaf people about the horrors that ensued as the result of the Milan conference. Click on the screen shot below to watch the revealing documentary -History of Deaf Education made by BSL Zone.

deafed
Screen shot of an old man pointing to his head. in the background is a picture of a younger man with head phones. the caption reads – Education should be about using your brain to think.” The screen shot is a hyperlink that takes the reader to an online video about the history of deaf education.

In the days before technology became what it is today hearing aids were very rudimentary devices. Learning to speak was hard work indeed. It is well documented that so much time was spent on teaching children to speak that their language development was severely impacted. Spending hours a day to learn how to pronounce one letter or one word will do that to you. Many deaf people of this time became functionally illiterate. The documentary shows many of the cruel practices that were used to teach deaf children to speak. I was horrified to learn that many kids had their tongue manipulated to the roof of their mouth to get them to pronounce the letter L properly.

The documentary implores educators and policy makers of the day to learn from the mistakes of the past. In the screen shot the caption reads, “Education should be about using your brain to think.” The man in question was arguing passionately that the hours spent on speech impacted on the deaf persons learning, language and ultimately their ability to use their brains to THINK!

Imagine this mans horror if he were to see a recent poster that has been distributed at www.AuditoryVerbalTherapy.net

cochlear
Poster of young girl with cochlear implant. the heading reads -This Is not my cochlear implant. Insert caption implies the cochlear implant is a brain development device that gives access to the world because it gives access to sound.

On viewing this poster he would have been instantly transported back to the days where he was subject to the cruel practices of oralism. He would have remembered the endless hours of speech lessons that occurred at the expense of his education. It is not being overly dramatic to suggest that the poster is likely to cause the man, and many other deaf people that had a similar experience, immense trauma and anger. The poster is insensitive to the extreme.

Apart from that the poster is profoundly misleading. The poster gives the impression that only through speech and sound recognition can the brain be developed. It uses emotive language and suggests that only speech is the “ticket to the wider world.” The poster is not just misleading, it is a blatant lie.

I thought in 2015 we had long since left the old SPEECH IS EVERYTHING argument behind. Speech is not everything, language is. Whether it be by spoken means or through signs. Speech and sign are not language themselves, they are merely tools to convey language.

As we know, no language follows the same rules. Italian is a language that has different rules to English. Likewise sign languages have different rules to spoken languages and so on. What languages do is is allow us to make sense of the world, express ourselves and interact with our fellow human beings. Even if we have a different language to another person the very fact that we have a language allows us to communicate with these people. Indeed knowing a certain language is our key to learning other languages too.

All that speech or signs do is allow us to articulate language and be understood. It is language that is the key to our brains development – Not speech and indeed not even signs – Just language.

This is why this poster  is so profoundly misleading and offensive. It is misleading because it implies that only through speech can our brains develop and this is wrong. It is offensive because it implies that parents that have chosen sign language for their children are in some way impeding their child’s brain development. I know today’s technology has meant that many deaf kids are learning to speak a lot better than in the past. I know that today’s technology has meant that deaf kids are developing spoken language to much better level than ever before. BUT ….

Even with today’s technology language can still be delayed or impacted. This poster implies that speech and listening is the ONLY WAY. Many parents who know nothing about deafness will buy into this message. The consequence of this is that many deaf kids are going to have their options limited. The research is clear – sign language supports speech development. Babies that sign exhibit less frustration and are able to bond more quickly with parents simply because they are able to communicate earlier and this lessens communication frustrations. This communication assists  in the learning of concepts that are an integral part of language. In turn this understanding of language boosts speech development. SIGN DEVELOPMENT DOES NOT IMPACT ON SPEECH DEVELOPMENT – rather the two complement each other.

Let’s be clear, speech and listening alone do not support brain development – Communication and language development do. Lets be clear, even with today’s technology the deaf child has limits on what he or she can hear. Some achieve more than others and the variables are many. No one should ever place limits on the acquisition of language for the deaf child by suggesting that speech and listening is the only way. This is what this poster is doing and for that reason it is profoundly offensive and I dare say BRAINLESS.

 

 

It Ain’t Necessarily So!

dogs
photo shows two dogs looking at each other. A little white dog is lying on a wall looking at a little grey dog that has lost the use of its hind legs and uses two wheels for mobility. The caption reads – The only disability in life is a bad attitude.

I’m not sure who coined the term inspiration porn but the first time that I ever read about it was in the work of the late and great Stella Young. For those not familiar with the term inspiration porn it refers to those quotes, photos and videos that focus on disability and have the aim to inspire. I refer here to examples like photos of amputees where they  are standing on their prosthetic limb, perhaps climbing a steep cliff and the caption reads – THE ONLY DISABILITY IN LIFE IS A BAD ATTITUDE!

We hardened disability advocates hate these sorts of things. Stella Young’s point was that the person with the prosthetic limb is inspiring because they are good at climbing cliffs, not because they do it with a prosthetic limb. Ms Young, who was a wheelchair user, would tell hilarious tales of well meaning people who would praise her simply for getting on a train and even pat her on the head. As she often said  – I AINT YOUR INSPIRATION.

I have been in the disability sector for well over three decades.  I have seen some really patronizing behavior in my time and as a result I am sometimes hardened and cynical. Often this patronizing behavior is well meaning. It’s really hard to tell someone to disappear up their own proverbial when they say things like, “You speak so well for a deaf person.” As I said, they mean well and sometimes it is just easier to turn the other cheek.

Of late I have had cause to question my cynicism. There have been videos of people with a disability doing relatively ordinary things but I have been touched.  I have been asking myself whether I have become too cynical about memes and videos that focus on people with a disability doing ordinary things. I guess there is fine line between inspiration porn and a genuine attempt to raise awareness and challenge attitudes.

This all started with who I call Ricky Martin in a wheelchair.  Before I comment further, watch the video below.

In this video “Ricky” is having a great time. He is clearly enjoying himself immensely. His smile is broad and his enthusiasm contagious. He is in a wheelchair and he is dancing like no one is watching. He has these huge, muscular and very long arms. The watcher can’t help  but be touched by his up and at em’ attitude. Those arms they are everywhere! If I am honest I actually found the video a little comical and that probably is not fair.

My first reaction was to laugh and groan because I have been conditioned to see such videos as inspiration porn. I saw it as a video that has been made to inspire us all. Man in a wheelchair dancing, wow, how wonderful! The first thing you will notice is that the language is not English.It comes from Chile. Now the man in question is simply asking people to vote for him so that he can get to Miami for a competition and record a song. He is simply doing what he loves and the video is really not inspiration porn at all. It’s simply a guy doing what he loves and proud of it.

Sadly, the cynic in me automatically labelled this video inspiration porn and it clearly is not. For that I am sorry and I really need to clean up my act. Sadly too, there will be many who show the video and who will show it because they want to inspire others. There is nothing like a man in a wheelchair dancing to tug at the heart strings. I am pretty sure the guy in question did not intend to do that. He just wanted to dance and show off his moves. We really need to consider the issue of inspiration porn more carefully.

The same day I saw another video featuring a couple who have Down Syndrome who were lovers. The video tells the story, watch it below:

Now I am a sucker for happy stories. I cry at the drop of a pin and I have to say that I watched this video and went AWWWWWWW. Embarrassingly there was a lump in my throat. I found it very touching. The love that the couple had for each other was absolutely glowing. You had to have been made of steel to not be touched by it. But again inspiration porn raised its ugly head. I started to question my reaction. I wondered if I was reacting because it the couple in question had Down Syndrome and not just because it was a truly touching video of two people in love.

And then the cynic in me started to ask questions. Is McDonalds using this video to shamelessly promote themselves? Has some sharp marketing guy seen an opportunity and planted the idea in the young fellows head and set it up so that there is not a dry eye in the house? Did he plan it so that we are all inspired by the story of these two lovers who have Down Syndrome? And then a little voice in my head said STOP.

Firstly, the video is telling  story. It tells a story of two people with Down Syndrome who are in love and want to live together. Whether we like it or not, our society does not see  people with Down Syndrome like this. Our society often recoils at the thought that people with disabilities might actually like sex. Our society actually recoils at the notion that people with a disability have the same feelings as any other person. The same desires and aspirations. This video challenges all these notions, and for that reason it is brilliant.

To be honest I am now questioning my attitude towards inspiration porn. There is no doubt that inspiration porn exists. There is no doubt that some of the messages that inspiration porn promotes are actually the wrong messages.  Inspiration porn sends a message that being disabled is, for some reason, exceptional. Inspiration porn suggests that people with a disability doing everyday things like working, learning and playing is, therefore, also exceptional. There is no question that there is too much of this type of material around.

But some videos and material that might seem to be inspiration porn are actually not. Some of this material forces people to challenge their perceptions of disability. Some of this material actually creates better awareness and acceptance.

Sadly many of us hardened disability advocates have become so cynical about the way disability is promoted that sometimes we cannot tell the difference. I am one of these people. It’s time for us all to have an intelligent debate about inspiration porn. Because what seems to be such ain’t always necessarily so.

Exclusion Today!

eating
Banner that highlights eating disorders – text includes Anorexia Nervosa, eating disorders, treatment, resistance.

My friend told me last week, in fact she told the world on the Disability Access Wall of Shame page, that she had been admitted to hospital for mental health reasons 131 times. My friend has an eating disorder. Eating disorders are complex. They can be caused by any number of factors that include genetic vulnerability, psychological factors and social cultural influences. Genetic vulnerability refers to appetite, metabolism or reward and pleasure responses among many things. Psychological factors include, but are not limited to, personality disorders, core low self-esteem and obsessive compulsive disorders. Socio-cultural issues refer to things like the Western view of thinness and beauty and stereo typical media portrayals. Whatever the reason for an individuals eating disorder, be in no doubt that such disorders are devastating and require almost ongoing treatment and diligence.  http://www.nedc.com.au/risk-factors

My friend is a great advocate. On Facebook she talks openly about her eating disorder. She tries to create awareness as much as she can . She is particularly loath of fad diets, feeling that they contribute to the stereotypical body image. For her the best diet is simply one where people are eating healthily and adequately. I have learnt much from her posts on Facebook. Even though she is a strong advocate for people with eating disorders she sometimes has relapses. In many ways Facebook is a godsend for her because she is able speak openly about the challenges she is confronting and get enormous support from her many friends.

Apart from fighting her eating disorder my friend is also deaf. She does not sign and relies on what hearing she has and lip-reading. As stated in the introduction, my friend has had 131 separate admissions to hospital to tackle her eating disorder. Her story is harrowing, not only because eating disorders are so devastating, but because the mental health system in Australia simply is not set up to cater for people with any type of hearing loss or disability that impacts on communication.

In my friends own words, the communication issues are very frightening and real. Said my friend, “They never, EVER offered me someone to help me understand what was being said at ward rounds, at the doctor visits or otherwise. I do not sign but am profoundly deaf in both ears. They refused to get someone to write what was being said for me.” One hundred and thirty one times my friends condition has led her to be admitted to what she calls the locked psych ward . Imagine that, locked in a ward, in pain and a great deal of mental distress and no one will make an effort to do something as simple as write down what people are saying. Meanwhile doctors and ward personnel and speaking with concerned and serious looks on their faces – Wouldn’t you want to know what is going on?  This is happening everyday somewhere in Australia.

Then of course when you are very ill you are often required to stay in hospital for lengthy periods. Psych wards are particularly strict. They have to ensure that the patient does not harm themselves in anyway. My friend talks about this in detail, “They even, a few times, tried to take my hearing aids away because they said ‘they have small parts, they are dangerous, you might swallow the batteries”   Naturally for the deaf person communication is a challenge in this sort of setting. The patient who is deaf needs every bit of help that they can get. For lip-reading, residual hearing can be of great benefit. It allows the person who is deaf to be able to pick up vowel sounds and hence understand the difference between many words. Imagine being in a locked psych ward where doctors are already refusing to write for you or provide assistance for you to understand what people are saying. Imagine how you would feel that they want to take away the one thing that can at least help you to understand something, your hearing aids. How horrifying might this be?

But it did not stop there. “They refused to allow me to use my FM system to hear better (the cords are dangerous that are used to recharge it although they could charge those in the treatment room where they allow other patients to charge things.)”  OK I understand that in a psych ward the doctor wishes to minimise risk as much as possible. But what they are doing here is effectively cutting my friend off from the world. They wont adjust their communication. They are taking away the only technology that is giving my friend any semblance of access to her treatment or to communicate with people in the ward. It is not just discriminatory it is tantamount to torture and exclusion. Yet the Doctors and ward personnel seem to be unaware as to what they are doing. “They refused to take on board anything I asked them in terms of facing me, speaking clearly, not covering their mouths etc. It was HARD. Especially when you are extremely unwell and you don’t have anyone to advocate for you.”

But the exclusion is not limited to just the communication with Doctors and ward personnel. “They refused to allow me concessions like being able to use my phone to text people (everyone else has access to the ward payphone 24/7)” Apparently it is common practice to take mobile phones away from patients because the psych ward cannot monitor what the patient is communicating.  Of course a public payphone is no solution for the patient who is deaf. Then of course there is often no access to the television due to the lack of captioning. No access to peers or group sessions because adjustments for communication are not made. Arguably admission to a psych ward is so socially isolating for the deaf person that it might actually do more harm than good. Recently my friend had a cochlear implant. Pointedly she states, “I am scared to go back, to be honest, now that I have a cochlear implant because I can’t see them letting me charge the parts for that every night.”

This is mental health support for the people who are deaf in Australia today. No awareness, no communication and extreme isolation. It is not only horrific but it is also potentially doing more harm than good. There is much that needs to be done to improve mental health care, and indeed all health care, for patients who are deaf.  In recognition of the extreme challenges people who are deaf face in accessing mental health support, Deaf Victoria and its partners will be hosting a mental health conference, Let’s Talk About it – Mental health and deaf people – on the 16th and 17th November 2015. It can not come soon enough.

What has happened and continues to happen to my friend is simply horrific. Drastic changes are needed.

Anxiety Rising ….

download (1)“Does Melbourne have interpreting 24?” This was the rather cryptic message I had on my phone last night at 7.15pm. I sought to clarify, “Do you mean is interpreting available 24/7?” My friend confirmed that this was indeed what he was asking. I affirmed that interpreting was indeed available 24/7 but it was not easy to get at short notice. I asked my friend why the information was needed. “It doesn’t matter.” was the dismissive response.

This immediately set alarm bells going in my head. My friend has a history of anxiety and depression. I pressed my friend to explain why the question was asked. After at first denying anything was wrong my friend explained that he was feeling very anxious and depressed. He wanted to take himself to hospital but did not want to worry his family. He would only go if interpreting could be arranged. I told my friend I would make some queries to see if arranging an interpreter could be fast tracked. He thanked me and said he would have a shower to try and calm himself down.

While my friend showered I located the nearest hospital. I contacted a friend who is involved in the interpreting industry. My interpreter friend asked which hospital would be involved and provided me with some information about booking interpreters at this particular hospital. It seemed that this particular hospital had a contractor that arranged both its spoken and sign language interpreters. I sought out the contractors phone number, which was thankfully listed on the contractors webpage.

I contacted the hospitals mental health intake department through the National Relay Service. I told the relay officer that I was calling on my mobile and apologised in advance for the many typos that were about to follow. Thankfully I got through to the mental health intake reception without delay. I explained that my friend was in some distress. I explained that my friend would shortly attend the hospital to seek support for his rapidly increasing anxiety. I explained that my friend required an Auslan interpreter and it would be advisable to try and get the process of arranging one happening as soon as possible. The Intake worker put me on hold and diverted me to emergency.

Emergency answered quickly. I explained the situation again. I explained that my friend was on his way, which he was. The emergency person asked my friends name which I provided. I again stressed that they should begin the process of arranging an interpreter and provided the contact details of the contractor that serviced the hospital. The emergency person, while empathetic, stated that she had no authority to arrange an interpreter and that nothing could happen until my friend arrived at emergency and hung up on me.

While I understand this, I also know hat arranging interpreters at short notice is difficult. I also knew that my friend might be in some distress when he arrived and that this was going to be an extreme barrier for communication at admission point, especially as my friend is deaf and was coming alone . It is what it is. I hoped for the best.

While organising this I was also talking to my friend on Facebook Messenger, while at the same time dealing with the hospital through the NRS. Technology is good for that. I provided my friend with all the relevant information. My friend typed this into his phone. My friend was not confident in his speech and the plan was to have everything typed into his phone, including he interpreter booking process. On arrival my friend would show what he had entered into his phone to the triage nurse.

It seems that the nurse was actually quite responsive and immediately tried to call the number provided.  It was after hours and no one answered the phone. My friend was probably in a panic at this time. Nevertheless, he managed to suggest that the triage nurse try the National Auslan Booking Service (NABs). They couldn’t get an answer there either. Being a public hospital NABs  probably would not have helped anyway as they only service private hospitals. Apparently my friend provided a number for Auslan Connections too, there was no luck getting an answer there either.

The nurse tried to liaise between mental health intake on the phone and my friend. My friend, by this time fed up and extremely agitated, got up and left. He sent me a message. He said he was in his car shaking and breathing heavily. Somehow my friend drove himself home and managed to find some sort of equilibrium. In the morning he contacted me to say he was alright and aplologised for the drama. I told him not to worry. I was just thankful that he was ok. It could have been so much worse.

I am not sure what went wrong in this case. There are emergency numbers to contact. Vicdeaf advertise an emergency online interpreting service. I am aware Oncall have something similar. It seems that somewhere that the process broke down. I am not sure why, but clearly the process at the shopfront broke down. The nurse, who I must say did her very best, seemed to be unaware of the options. My friend, even in his agitated state, tried to help her understand what options there were to no avail.  It is unfair that the patient should be expected to do this. If you are in great pain or in great distress you are often in no fit state to be educating people at the shopfront as to how to book an interpreter.

What this case highlights is that the health system, particularly when it is a crisis, is not considering nor meeting the support needs of people who are deaf. Something urgently needs to happen. My friend, thankfully, managed to find some sense of balance and calm down. What if he had not. The consequences could have been extreme.

This is not an isolated case. Communication in the health system is crucial, particularly where diagnosis needs to be made. Get it wrong, provide the wrong drug or have the patient not understand how to take the drug then death can be the result. If not death, serious injury can occur. It has happened.

Being able to communicate with a patient is vital for obtaining an accurate and comprehensive patient and family assessment, formulating and implementing a treatment plan, determining the effectiveness of nursing care, and evaluating outcomes of care. ****  In Australia at the moment this simple and straight forward concept is not happening in regard to healthcare and communication for people who are deaf. Something needs to be done now before someone dies, is injured or injures another person. This could so easily have been my friend last night. We need to act – and soon!

**** http://www.euromedinfo.eu/using-interpreters-in-health-care.html/

 

A Definition of Contempt

downloadThere is  lot being written at the moment about the movie The Tribe. This movie has taken the world by storm. It is unique in that it is filmed entirely in sign language, Ukrainian Sign language at that. There are no captions, there is no translation and the watcher must follow the movie entirely through visual mediums. Philip Debs, a Deaf man, went to see this movie and he enjoyed it immensely. Said Debs, “The story line and the actions throughout the movie make it very easy to follow.”  I asked Debs if he found it easy to follow because he is deaf and used to visual mediums for communication. I asked whether it might actually be more difficult for a hearing person with less experience to interpret visual story lines.  He was forthright in his reply, “I think it would be probably be very challenging for them (hearing people) and less challenging for the deaf (sign language users)” 

Nevertheless the movie has received much acclaim. It has won prizes at the Cannes Film Festival, The London Film Festival and from the American Film Institute.  I wonder how these hearing people that are applauding The Tribe as a cinema masterpiece would react if they had to watch movies without knowing what the characters were talking about everyday. I am sure the novelty would wear off very quickly.

Deaf people that attended the movie were interviewed as part of an ABC TV story. They all seemed to enjoy the movie. Interestingly Debs took the opportunity to raise the issue of cinema access for people who are deaf. This was canny of him. Canny because it was an opportunity for hearing people to empathise with how people who are deaf are expected to access the cinema almost everyday and compare it with their experience of watching The Tribe.  Debs took the opportunity to highlight the issues of the awful Captiview device such as eye strain, headaches and constant device failures. Debs disparagingly labelled Captiview with the term Craptiview.  This is, of course, the none to complimentary label that the deaf community have given Captiview.

The ABC showed this story on Lateline. They tried to interview the cinemas responsible for the introduction of Captiview. Only one cinema franchise would respond, this was Village Cinemas.  Village proudly proclaimed that they provide five devices per screen and an open captioned session once a month.  Looking at the Village movie schedules in Melbourne there are movies that are closed captioned in the next few days including Saturday and Sunday. However,  most cinemas only have one or two movies captioned.  The choice is extremely limited. Certainly there would appear to be virtually hundreds of Captiview devices just gathering cobwebs, especially if there are five per screen. Sadly, there appear to be no open captioned sessions at all, which is what people who are deaf prefer.

What I don’t get, even though Captiview is much loathed, is why they cannot provide captions for almost every session. Consider this:

  • In total there are five devices per screen in a cinema complex. This means, if Village are to be believed, that every screen has the ability to provide closed captions, even if it is through Craptiview.
  • In the next three days  there are 10 movies with closed captions sessions through Captiview.
  • Of all the mainstream movies on show only one, Tomorrowland, does not appear to have any captioned sessions. This means ALL the movies except Tomorrowland have closed captioned files.
  • There are some foreign movies with subtitles.
  • Nearly ALL the closed caption movies would also have an Open Captioned file. Indeed we know that even closed captioned files used by Captiview can be programmed to appear on screen. The cinemas stubbornly refuse to provide open captions any more than once a month. (According to Village anyway.)

On the surface it looks like there is a fair bit of choice for people who are deaf if they want to risk the perils of Captiview. I can see the pro-Captiview people sitting up  haughtily and saying – “SEE I TOLD YOU SO” But consider this – Every movie on show at Village at the moment, bar one, has a closed caption file. This means that if the cinemas care enough all they have to do when they get the movies from the distributor is request the closed caption file. Once they have this file they simply need to ensure it switched on at the start of the movie.

This means, potentially at least, that almost every session – AND I MEAN ALMOST EVERY SESSION – potentially can be captioned. Village cinemas can provide full access from the moment they open until the moment they close. But they don’t! And it costs them nothing because the closed caption files are part of the cost for hiring the movies that the cinemas show.

Most Village cinemas are showing the same movies. For example they have popular blockbusters like Mad Max, Entourage, The Avengers, San Andreas, Spy, Aloha and so on. All of these movies have a closed caption file and are being shown at various locations across Melbourne. At Airport West, which is a Village franchise,  They are showing Mad Max, Entourage, Aloha, San Andreas  and several other movies that are being shown with closed captions at other locations. Yet Airport West are only showing Entourage with captions and nothing else.

Why are they doing this when clearly there are caption files for all the movies they are showing? It is a similar story at other locations although some are showing more than one movie with closed captions. The most would be three movies at any one time. Yes, most people who are deaf hate Captiview but this is besides the point. The point is that the cinemas, not just Village, are treating patrons who are deaf with absolute contempt.

They have the capacity to deliver closed captions to every session. It will cost them nothing and all they have to do is switch on the captions at the start of the movie. Not only do we deafies have to put up with a device that is a health hazard but we are having our choices limited by mega rich cinema franchises that have the capacity to deliver captioning for virtually every single movie at NO EXTRA cost!

Our advocates who sold us up the creek with this device when we were clearly being screwed also have a lot to answer. They with their playing of politics and fancy semantics have a lot to answer for. We cannot turn back the clock, whats done is done. But surely we should not stand for being treated in this way. The cinemas simply do not care. It is a disgrace!

Those hearing people who are enjoying The Tribe so much, enjoy it while you can. Enjoy it with the thought that it is probably he only movie you will ever watch where you do not fully comprehend what is going on on screen. Just thank your lucky stars you are not treated like dirt which is how the Big 4 cinema franchises treat deaf people!! The way they treat patrons who are deaf is the definition of contempt.

Mad Max: Fury Road a Feminist AND Accessibility Triumph – By Ricky Bryan

charlize
Character Furiosa from the recent mad Max Movie. Shown here brandishing her amputated arm while fighting with and ultimately killing a bad guy. She is sitting astride the bad guy about to shoot him with a sawn off shotgun.

There has been a lot of talk lately surrounding the feminist themes of the new Mad Max movie Fury Road. Aside from a few concerns, those themes are definitely there, definitely welcome and they were definitely intended. Vagina Monologues author, Eve Ensler, was a consultant on the movie so you know it was in the frame from the start.

What has gone unmentioned, however, is that the movie is also a triumph for disabled people. The lead character, (not Max! He’s really a supporting actor), but Charlize Theron’s, Furiosa, has an amputated arm and she wears a steam-punk style prosthetic limb.

The arm is never explained, never used as a plot device and no one ever tries to tell her she can’t do something because she’s missing an arm.

She is simply and utterly a total bad-ass. She drives a truck, shoots better than Max does, kills the bad guys in hand to hand combat and throws her stump into action in a way pop culture has never shown before.

Traditionally amputees are shown nursing their stumps, dealing with them gently and with great care. We are suppsoed to pity them and admire their triumphs. We know this is not the case. In real life amputees stand on their stumps, bash items into place with their stumps, hit balls, fight their siblings and effectively carry on as normal with the bodies as they are.

Furiosa’s stump simply shows that this is harsh world and at some stage she lost a limb. She didn’t let that stop her from being the best truck driver in the wastelands. She just fashioned a prosthetic and got on with things.

A nice touch is the artwork on her truck, it shows a skeleton arm on the door, her disability has become part of her personal brand but it doesn’t define her.

The movie also features actor and disability advocate Quentin Kenihan. Although his role is small and his character’s relationship with his giant brother in the film is more a nod to the Master/Blaster character in the third movie than it is anything to do with the plot. Still its great to see him show up in the movie so many years after first coming to fame as a child.

Of course a lot of praise must go to the strong performance Ms Charlize Theron.  Many viewers are angling for her, not Tom Hardy as Max, to be the title character in the sequel.

Mad Max might not be your cup of tea, but if it is it’s worth a watch. We should be praising the film makers for both for their revisionist take on the action blockbuster but also for their depiction of disability.

For more of Ricky’s writing, particularly on marketing go to:

http://martsketing.blogspot.com