The Deaf Executive

executiveTwo months ago I embarked on my journey as the Senior Local Area Coordinator for the Whittlesea Region that has the responsibility of rolling out the National Disability Insurance Scheme (NDIS).   The NDIS is a huge program. There is so much to be learnt including legislation, processes, computer systems, line items, communication channels and so on. It’s difficult to describe just how big it all is, just take my word for it – IT’s HUGE!!! It’s so huge it is actually scary sometimes. It’s particularly scary for the person that wants to access NDIS and our job is to make that process as smooth as we possibly can.  We do not always succeed, but early evaluations show that more than 95% of nearly 200 people that have accessed the scheme in our region are highly satisfied. I, and all of us in the job, are very proud of that.

As a deaf person I have to admit I had many anxieties about taking up the role. Chief among them were the issues of communication. Put simply there are lots of meetings, and I mean a lot. The NDIS is forever changing. Rules change at the drop of a hat. We all must be aware of these changes at very short notice. Meetings about changes are regular and often impromptu. Being such a huge scheme there are scenarios that we often must query. The NDIS head office is super responsive and when we receive responses these are communicated in the middle of the office floor. Naturally, as a Senior, it is vital that I am up to date with everything. It is impossible to have an interpreter with me all the time so I rely on my team mates a lot. Luckily for me they are brilliant. If an impromptu meeting is called any one of them, unasked, will sit next to me, open up Word on my computer and begin “captioning” the discussions. Without them, I would be lost.

And then there is the training. Naturally because the NDIS is so big there is a lot of training for us all in these early stages, particularly for the executive. My boss, quite often, will say to me that she wants  me to attend training the next day or in a day or so. If you are deaf and require interpreting support you will know that this is a headache. Nevertheless, this is what I am dealing with. I either sink or I swim. Part of the swimming means that I need my interpreter or captioning providers to be on their toes and super responsive . This means I must be supremely organised and connected.

My preferred provider for interpreting is Auslan Services. For captioning it is Bradley Reporting (with apologies to Captioning Studio, who are equally brilliant.) The reason for this is that these two organisations have a supreme understanding of the demands of the deaf professional. Because they have this understanding they respond. Not only that, they want to make sure that the deaf professional has the absolute best access that can possibly be provided. I am connected with these services in different ways. I can email. I can text. I can use Facebook Messenger to get them. I can hop on Skype and find them there sometimes too. Nine times out of ten if I contact these providers I will get a response within half an hour as to what they can do. As a deaf professional this is what I need, it cannot be any other way.

In my fourth week of work I was sent on four days training at one days notice, 9 am to 5pm. Between these two services, within 24 hours, they had found a way to provide me with captioning and interpreting for the full four days. It was combination of live interpreters, live remote captioning and interpreters by Skype. It is naturally a logistical nightmare coordinating it all. It needs a service provider, a captioner and an interpreter who are flexible, responsive and empathetic. Luckily for me all these criteria were met. It is not easy.

Indeed with Bradley Reporting they have often had to find me captioning within a few hours. I will contact them at 10 am and ask if they have a captioner available at 1pm. This has happened at least three times and each time they have met the challenge. With the current demand for interpreting and captioning being so high this is no mean feat. Just think about it. They have a huge day of coordinating services for a huge number of clients. Bloody Gary calls at 10 am and says I need captioning in a few hours. On top of their already huge workload they manage to find time to organise this within an hour. Thats professionalism! As deaf professionals this is the type of professionalism we need! Nay, its what we must demand. It cannot be any other way.

We cannot dilly dally with crap systems. If there is a system for booking on your mobile phone it has to be super effective. If that system doesn’t work effectively it is the deaf professional that is disadvantaged. I can’t waste time with online booking systems that send you the wrong booking form. I cant waste time on a mobile phone booking system that freezes at a certain point. It must work, quickly and effectively. If it does not, I spew. My office know that when I mutter WTF under my breath that something has gone wrong. Its not uncommon for them to come over and ask if I am OK! The bulging eyes and red face must be a dead give away.

And we have a right to demand this. Interpreting and captioning is a multi-million dollar industry. For the deaf professional it is often the employer that is picking up the tab, and at great expense. We get $6000 from the Government, bahahahahahahahahah, mine was all gone within  two weeks. By week four my boss got a combined bill for interpreting and captioning of $16 000. Now at week eight I am sure this has more than doubled. And my employer provides it with out flinching, without complaining. In the UK you can get up to something like $80 000 a year for interpreting in employment from the Government. It all depends upon the demands of the job. But here in Australia it is a paltry $6000. This is something for our new Disability Commissioner, who I am sure is using up interpreting and captioning  dollars faster than he can say boo, to fight for. It has to change.

So here I am entering my third month. I have been inspired by the responsiveness off my team mates. Mostly I have been inspired by the professionalism and responsiveness of Auslan Services and Bradley Reporting. To be quite honest, without their professional and responsive services I am quite sure I would be out of a job and on the verge of a breakdown. Hats off to them.

Welcome to the brave new world of the deaf professional!!!

 

The Deaf Boss

I am not really a boss. I am called a Senior. They call me a mentor and a coach. It’s the new fangled way of describing a line manager I guess. Whichever way you look at it I have staff under me. I have to lead them, approve their leave and even give them permission to go home early if they wish. Last week one asked me, by email, if he could go home 30 minutes early to coach his daughters soccer team. I emailed a reply that went along the lines of  – I am the three monkeys.  He didn’t get it so I sent him the pic below. He gave me a wry grin. I am sure he was thinking that I was a bit left field, never mind that I am deaf too.

monkey

Regular readers of The Rebuttal will know that I have been quiet of late. That’s because I started a spanking new job with Australia’s most important disability program. The job started with a week of full on training, 9 am til 5 pm. I can tell you I was bushed at the end of it. There was so much information to cram in. Legislation, processes, flow charts, reviews, planning, assessments, computer systems, case studies and so on and so on. All of this through two sign language interpreters. My eyes and head were bursting at the end of the day. I thought it would end there but it didn’t.

They decided, because there were a few system glitches, that we would all stay in training for another week. This was Thursday and they needed interpreters full time starting Monday the following week, for five days from 9 am til 5 pm.  If you are a reader from overseas I can tell you that in Australia supply and demand of interpreters is such that organising interpreters for such intensive training, and at short notice, is nigh on impossible. But somehow with the brilliant Auslan Services and some flexible interpreters willing to change their schedules we managed it. First big challenge of my new career met with aplomb.

So another week of training. Another week of cramming. Another week of intense focus on interpreters from 9 am to 5 pm. I was pretty much exhausted by that time and I had not even started the job proper. But on the plus side I was beginning to develop rapport with my new team mates. I began sussing out which were the easy ones to communicate with. Who was easy to lip-read. Which were flexible. Which were a bit more closed and needed guidance to feel comfortable communicating with me. It was a good time to suss this out.

It’s funny, because this is probably something unique to the deaf employee. It’s not a straight in and start talking sort of thing. You have to prepare and educate your team mates. Importantly you have to troubleshoot and identify possible challenging teammates who you will need to work extra hard to communicate with. Thankfully there are not many of the latter. My new team mates are wonderful.

So training complete it was off to the office to begin the job proper. I was very apprehensive. I did not really know what to expect. I was a Senior with higher responsibilities. I had no idea how the office would operate, how the team was structured, what communication systems were in place already. I was going in blind so to speak. To top this off in the office were several new team mates who had been on board for a while. I had to get to know and suss out these teammates, just like I had done with my team mates who attended the training. I was uncharacteristically nervous.

The team were great. They all made the effort to communicate whatever which way. Email, writing, lipreading, typing out on the computer, they were all just brilliant really. Here was me the senior and they were taking the lead and making every effort to meet me half way. It is a very rare thing. It made my job that much easier and settled my nerves straight away.

But it was not all plain sailing. The team had this strategy of calling impromptu meetings.  Someone would have an issue to discuss and it was on. It might go something like this. “Listen up people I have a message from the head office we have to discuss how to deal with the delay in delivery of new laptops …” And there in the middle of the office floor would begin a full scale meeting. Of course there was no way that I could follow and I began to glance about me anxiously every-time someone stood up.

I made a note that I would need to talk about this with my manager because it was obviously disadvantaging me. I understood the need but I was obviously missing out on vital information. Just as important, the team were missing out on the benefits of my experience as I was unable to contribute anything to the discussions. I was just about to head into my managers office to discuss this when they called another impromptu meeting in the middle of the floor.

I must have looked really stressed because what followed was something I have never had happen in 30 years of my work life. A colleague sat down next to me with her computer and began typing out everything people were saying. And she was as good as any live captioner I have ever seen. She was so fast I was even able to stop people occasionally and add my two bobs worth.

It didn’t stop there. There was another meeting half an hour later and someone else volunteered to scribe. During the week there were several more impromptu meetings and every-time, and without being asked, someone volunteered to type out the discussions. A proactive workplace. I can tell you I have had wonderful workplaces in my career but I had never experienced that. I was very grateful and humbled. Even now as I type this I get a little teary. It is just a wonderful  and very rare thing.

I entered the second week of life in the office with a warm glow thinking how lucky I was. Then the boss hit us with a bombshell.  Once again she was sending me and a few others to training for four days, starting the next day. I asked her how she thought I was going to get interpreters at such short notice, or even captioning for that matter. “Do your best”, she said with a laugh, ignoring the filthy look I was giving her.

And some how I managed it. Overnight, with assistance from the brilliant Barney and Jason from Bradley Reporting, I managed to secure live remote captioning for virtually every session. Where captioning could not be made available the terrific Auslan Services filled the void, somehow finding interpreters either live or by Skype. Yes, I am unashamedly advertising the services of these brilliant agencies. They go above and beyond the call of duty to assist. Do not underestimate the importance of attitude and service when booking communication support. All deaf professionals need it to be spot on and these two agencies consistently meet the challenge.

Then I was allocated my staff. How lucky I was. Two were hard to lipread, and one really easy.  Of the two that were hard to lipread one preferred communicating by email anyway. Short and sweet communication just like me.  The other preferred face to face but we overcame that using the iPhone voice recognition technology.

We just go into Notes, touch the littler microphone on the keypad to launch the voice recognition and she speaks into the phone. What she speaks comes up in text. It is surprisingly accurate. Sometimes it turns off at the wrong time but she just patiently touches the microphone again and we are away. You would be surprised how fluent the conversation is between us. And whats more we have a record of everything we agreed in notes. It is really only good for one on one meetings but it is brilliant.

I know some people are asking – where are the interpreters. Well as an office operates, unless you have one on duty full-time, interpreters simply cannot be available all the time. So you have to improvise. That’s exactly what my team mates do. Whether its using technology, volunteering to scribe, using email, sending me texts or chatting on Yammer or Skype, they find a way. And that is life for the Deaf Professional today. Years ago none of this would have been possible. Attitudes were different and technology non existent. But not now.

That’s why I can be a boss now. But how lucky have I been to come into a team who meet me more than halfway at every opportunity. It’s brilliant! The world is made up of beautiful people, more than we care to acknowledge!

NDIS – Interpreters in the Crossfire

changeLet us start this article with an apology to the interpreters of Australia. In my last article I stated that they were grumbling about the changes to their pay and conditions that have been introduced by the National Auslan Booking Service (NABS). I meant not to offend and it was a poor choice of words. They have legitimate concerns and this article will try to explain some of those concerns. In the debate as to whether NABS should be kept out of the NDIS I am keen to get accurate
e information out there. I may err and if I do please correct me.

To the CEO that wrote in taking umbrage that I had mentioned a memory of an old article that suggested that most funding for disability organisations was swallowed up in management costs, overheads and let’s add consultants … I apologise not at all.  For too long large disability agencies have had too much control as to what services and how much service a person with a disability can get. The NDIS aims to give more control over funding to the client with a disability. Have they fully achieved that yet? No, but that objective is a good thing. It is all about choice and control.

This article aims to try and explain the concerns of interpreters that have resulted from the introduction of the NDIS. The aim is to further inform the Deaf community and Deaf sector. I want the Deaf community and Deaf sector to better understand that the changes that the NDIS brings with it raise a number of challenges for the interpreter industry.

An open letter from NABS released on 27th June suggests that the decision to place medical interpreting within the NDIS rests solely with the Minister responsible. NABS also note that they have known of the transition of NABS services to the NDIS umbrella for the last three years. They claim that repeated requests to meet with the Minister concerned have been denied. NABS state that they have lobbied hard to keep NABS as it is. (Click on the blue writing for the full text of the NABS open letter.)

It is the view of NABS that they are a service similar to the Translating and Interpreting Service (TIS) that services Culturally and Linguistically Diverse Communities. (CALD) NABS feel that their service does not fit into the NDIS criteria and is more aligned with TIS services.

Despite NABS protestations the Government has clearly classified Auslan interpreting in medical situations, and indeed all situations, as a disability issue. As NABS note, the decision has been made by the Minister responsible and only the Minister can reverse the decision.

The NDIA have to work with what they are given as do the Deaf community.  NABS note that as a result of this Government decision they have received significant funding cuts. Consequently they have had to make decisions about capping services and changing how interpreters are paid. Clearly it has not been an easy road.

Indeed the capping of services is already having ramifications. A number of specialist medical services that Deaf people have previously booked interpreters for have been cut. I understand that some of these specialist services include occupational therapy, X-Rays and naturopathy to name a few. NABS indicate that interpreting funded by NDIS plans will cover the services that have been cut. While this may sound good it does not help those Deaf people who are not within an NDIS roll-out site or have chosen not to have an NDIS plan. Indeed for many the NDIS will not be a reality until 2019. These cuts have left the treatment of many Deaf people in limbo.

It would seem from the NABS letter that the Government aims to phase out NABS. While this will not occur fully until 2019 it clearly has ramifications after 2019. What this means, as alluded in the previous Rebuttal, medical interpreting for people over 65 or Deaf people not on NDIS plans is an unknown quantity after this date.

The crux of much of interpreter concerns comes down to the conditions that the NABS are imposing on them as the result of the Ministers decision. The Minister has instructed that Deaf people who receive NDIS packages must use these funds to pay for private medical interpreting.

The criteria for using NDIS funds for medical appointments is apparently the same as the current NABS model. It can’t be used for public hospitals, it must be a private medical appointment, there are conditions around how interpreters can be used for hospital stays and so on. While NABS doesn’t cover everything it provides a good service and an appropriate remuneration. This remuneration recognises the unique conditions that interpreters work under. It takes into account travel costs and time to travel so that interpreters are adequately compensated when they travel. This means they can service regional and rural areas too. This was the old NABS anyway.

The introduction of the NDIS has led to pay structure changes. The NDIS has made the decision that interpreting services can be billed at a maximum of $115 an hour. Unless an interpreter is booked direct they will not receive the full amount because agencies receive a fee to cover management and booking costs.

I understand, as the result of the introduction of the NDIS, that NABS have reduced the minimum booking from 1.5 hours to just one hour. There have been other reductions in the payment of travel time and so on.  These changes will impact on the pocket of interpreters who can least afford it. I have been informed by an interpreter that they stand to lose up to $15 600 through the changes to pay and conditions that interpreters have had imposed on them by NABS.

In the previous Rebuttal we established that Deaf people over 65s can still access NABS. We have established that Deaf people not on NDIS packages, or not in an area that the NDIS is currently rolling out, can still access NABS. In theory no Deaf person should be disadvantaged but this is far from the case.  We now know some specialist medical services where NABS previously provided interpreters have been cut. We do not know whether all people who are Deaf will be expected to have an NDIS package to access medical interpreting after 2019. We do not know the fate of access to medical interpreting for people over 65 after 2019. Very clearly the new pay structure introduced by NABS is severely disadvantaging interpreters. There is much uncertainty.

Ill try to give a few examples here of how interpreters are disadvantaged. Minimum booking time previously was 1.5 hours. What this means is that if an interpreter worked for 30 minutes they still got paid for 1.5 hours of work. Now this has been reduced to an hour. That means if an interpreter was to do four medical jobs in a day they would lose two hours of pay. Over a week that’s one full day of pay that they have lost. What this may lead to is that interpreters will simply not do medical jobs. They will do jobs that compensate them adequately like education or employment.

The reduction in the minimum booking requirement by NABS also means that if there are huge delays in seeing a doctor, as is often the case, after one hour the interpreter might simply have to go because they have another job waiting. The current 1.5 hour minimum at least provides greater flexibility. All of these changes could mean, in the long run, less interpreters for medical jobs. This has the potential to put Deaf people at risk. It is a real concern.

I understand that NABS have changed conditions in a a number of other areas such as reductions in payment for periods of waiting and the abolition of reimbursement for parking and tolls. The end result is that the interpreters income is being severely reduced. It seems that all of these changes that have been introduced were more or less imposed on interpreters with no consultation and only one week until the changes were due to start. The bottom line is that if an interpreters standard of living is impacted by reduced income they may get jobs elsewhere. This may leave fewer interpreters available to work for Deaf people.

The NDIS rolls out may mean that many interpreters may choose to go solo rather than go through an agency. They will do this because they will be able charge the full $115 an hour rather than have to be paid at the agency rate. It might seem that $115 per hour sounds a lot but interpreters work under unique conditions.

For example most interpreters are usually only able to work a maximum of 4 hours/jobs per day in the medical field because of travel time between jobs. As a result, for a full day, many interpreters really only earn $57.50 per hour. From this interpreters going solo have to cover their own insurance, administration costs, car expenses, preparation time and ongoing professional development among other things. They also must put money aside for sick days and holidays. It doesn’t leave much left over.

As was pointed out in the previous Rebuttal the Deaf person has the right to choose who they book and with whom. Deaf people on self managed packages can even book any interpreter they see fit whether or not they are registered as an NDIS provider. The only condition is that the interpreter have an ABN. As a Deaf person I like this control but interpreters are right in being concerned that this will impact on quality control and the continued skills development of interpreters.

Agencies, including NABS, provide professional development and ensure that interpreters that are allocated to jobs have the skill set to do that job (in theory anyway.) The NDIS claim that they have a rigorous process for registering as an agency or interpreter as a provider under the NDIS and they do. The NDIA also, rightly in my view, claim that the Deaf person knows who is best for them. This is why many have preferred interpreters.

But for interpreters this is a real concern because medical interpreting is a specialist field. An interpreter who is inadequately skilled could place the Deaf person at risk through interpreting medical information wrongly. Interpreters, many who have spent years and a lot of money honing their skills, are well within their rights to be concerned about this lack of quality assurance.

They are very fearful of an influx of “cowboys and cowgirls” that may see the NDIS as a means to make a quick buck. I have already seen one piece of marketing material where an interpreter has set themselves up with the line that goes something like- See me for your NDIS needs.

One must also consider that interpreting work is largely seasonal. During holiday periods there are often down times for interpreters where there are very few jobs. This means when they are in demand they must maximise their income. If interpreters are being hit in the hip pocket they will seek other employment. This will mean less interpreters  for a system that already cannot meet demand.

Changes to payment for travel time may mean interpreters are less likely to want to travel. This may mean that Deaf people in rural areas and the outer suburbs will miss out.  The reality may well be that interpreters will just decide to give medical interpreting a miss and choose the more stable jobs that provide a better income. If this happens the Deaf community may be put at risk in many medical situations. Some interpreters may simply give interpreting away altogether.

Lets look at some of the issues that the Rebuttal has established with todays article and yesterdays article.

  1. People who are Deaf and use Auslan as their primary means of communication are seen as people with a permanent and significant disability. They are eligible for NDIS services.
  2. Deaf people who are not currently on NDIS plans can continue to access NABS services as usual.
  3. Deaf people over 65 will be able to continue to access NABS services.
  4. Deaf people who decide to establish an NDIS plan must use funds for interpreting to pay for medical interpreting. If they become very sick requiring extensive treatment and more interpreting is needed then packages can be renegotiated
  5. There is a question mark as to what will happen after 2019. It seems that the aim of the Government is to phase out funding NABS completely and use only NDIS packages to fund medical interpreting. This raises questions in regard to medical interpreting for Deaf people over 65 and also Deaf people who choose not to access NDIS packages after 2019.
  6. There are flaws in the “self managed” packages in that Deaf people can basically book whoever they want and are comfortable with. Quality control and monitoring of “unqualified” interpreters will possibly become an issue.
  7. The NDIA, on their own admission, have very few case studies to go by. This means developing an appropriate assessment tool to work out how much interpreting is needed is problematic. It will take time.
  8. NABS have received significant funding cuts and have had to drastically change conditions in how they remunerate interpreters.
  9. These changes mean that interpreters will be paid significantly less. This is a concern for many of them.
  10. Changes to conditions and the NDIS pay structures MAY mean that interpreters decline to service areas where there are significant travel costs involved.
  11. Ultimately interpreters need security. If this can not be provided they are likely to choose work that remunerates them appropriately. Indeed some may actually leave the profession altogether leading even greater stress on a system that cannot meet demand.
  12. NABS and many in the Deaf sector see NABS services as the equivalent of services that are currently provided to CALD groups through TIS. Consequently NABS believe that medical interpreting should be funded separately from the NDIS. The Minister responsible clearly disagrees and sees interpreting as a disability issue and not linguistic one.
  13. New NABS rules has seen a cut to the specialist services that they will provide interpreters for. This is already raising questions as to how deaf people will continue with ongoing treatment that they may be receiving.

This is where we are at. The Minister has made a decision that is unlikely to be reversed in the short to medium term. If the Deaf community and the Deaf sector believe they are being disadvantaged they must collectively lobby and collate evidence to show that they are being disadvantaged by that decision. The NDIS is in the difficult situation that it must implement some not well thought out decisions from the Minister.

Luckily the NDIS was developed to be a flexible system and the NDIA have indicated that they want to liaise closely with the Deaf community to attempt to address any concerns. Whether this will be enough in the long run is anyone’s guess. All we can do is to continue to inform ourselves and make an honest attempt to find solutions before rejecting the NDIS as am alternative for medical appointments outright.

That said there is likely to be a great deal of pain and anguish in the meantime before consensus can be reached.

 

*** Note that even under the NDIS there are still limits to accessing the hospital system, particularly public and emergency situations that are not covered. The long hard road for advocacy in this area has to continue.

*** This article was developed with assistance from professional interpreters impacted by the changes documented.

The NDIS Facts – NABS and the NDIS

signThe National Disability Insurance Scheme (NDIS) commenced in 2013. For the disability community it was a Godsend. For years disability funding had been controlled by large organisations. Much of the funding was eaten up in overheads and exorbitant management salaries. I remember reading somewhere that as much as 75% of funding was eaten up in overheads and management fees leaving only 25% to deliver actual services.

I am a great supporter of the NDIS. However, even I know that there are teething problems. It is a huge change and the NDIS is not yet running in a way that delivers fair and equitable outcomes for everyone. We have to be patient and allow the NDIS to develop and grow. It is a huge change and a new model. Mistakes will be made. That said, I firmly believe that in time, with the benefit of experience, the NDIS will get it right. But there will be pain before the gain.

Because of this we need to be careful not to knock the NDIS down before it has had a chance to deliver. There are many in the sector who would like nothing more than for the NDIS to fall over. If this were to happen it would be a disaster. We have to give the system a chance to develop and reach its optimal potential.

Recently there has been some uproar within the Deaf community about the NDIS. This has been in relation to the decision to place the National Auslan Booking Service (NABS) under the NDIS pool of funds. For those that do not know, NABS is the service that provides free interpreting for Deaf people who use Auslan to attend private medical appointments.

Deaf Australia have asked Deaf people to sign a petition to keep NABS separate from the NDIS. For better or for worse I think that ship has already sailed. The decision has been made and it wont be reversed any time soon. However, lets not panic. There may be some benefits in having some of NABS services delivered through the NDIS.

There is a lot of misinformation going about. For example people are saying that Deaf people who use Auslan for private medical appointments and who do not qualify for the NDIS will get nothing. Others claim that Deaf people over 65, none of who can get NDIS packages, wont be able to get interpreters for medical appointments any more. Others claim that interpreting under the NDIS will be a disaster because any Tom, Dick or Harriet will be able to set up an ABN and work as an interpreter even if they are not fully qualified.

Some of these fears are valid and some less so. To try and clear the air I met with the head office that runs the NDIS that is called the National Disability Insurance Agency (NDIA)  I asked them a number of questions ranging from eligibility, access for over 65s right through to quality assurance. The answers provided below have been fully endorsed by the NDIA.

Who is eligible for NDIS Services? – Firstly, let us be clear. Every person that is Deaf and whose primary method of communication is Auslan is eligible. AND I MEAN EVRY PERSON! Now there may be some people with relatively mild hearing losses who will not qualify but a Deaf person who uses and requires Auslan to communicate in everyday life will qualify. Furthermore Auslan interpreters are seen as a necessary support and will be provided!

There may be some cases where less experienced NDIS planners will make an assessment where they believe a Deaf person can hear enough and therefore not require an Auslan interpreter. I have some concerns that this may happen. It is a case of watch this space.

(People who are hard of hearing, who do not sign may also qualify for captioning or communication assistance, this area needs to be tested. I did not ask about this group)

How do we work out a reasonable amount of interpreting that is required?  – The NDIS admitted that this will be a steep learning curve and errors will be made along the way. The problem is that Deaf people make up less than 2% of all people that are accessing the NDIS. However, it should be noted that NDIS packages are not set in stone and can be renegotiated if need be. So if a person gets sick and finds that the amount of interpreting is inadequate and they require more they can approach the NDIA to negotiate more. If they are too sick to do this they can nominate someone to negotiate on their behalf. This is a relatively new area for the NDIA and patience will be needed as they learn and try to develop an appropriate formula to calculate interpreting requirements.

What medical appointments can I use NDIS packages for? – Criteria for using medical funds for interpreting is exactly the same as NABS. They can be used for private medical appointments. There are some restrictions as is the case with the current NABS model. For example, despite what I originally thought, NDIS funds cannot be used for emergency situations at either private or public hospitals. Interpreting in these situations is seen as the responsibility of the hospitals concerned. It is for the Deaf person to be aware of what the criteria are. (Sadly the lobby for full communication access in hospitals will have to continue!)

Who can I use as an interpreter for medical appointments? – The real answer to this is – any one you want. You can book an interpreter through any agency you see fit, even if it is not NABS. You can even book any individual you like if  they have an ABN. The NDIA are at pains to point out that they have a rigorous process of registering as a supplier where agencies and individuals must show and document their qualifications and relevant experience.

BUT the Deaf person can, if they so choose, just book any interpreter who has an ABN. This last bit has people up in arms because they fear an influx of unqualified interpreters to the sector. In the words of the NDIA – “If a participant decides to self manage, they can engage anyone they wish. You would expect people who can choose who they engage will know who is good and who isn’t so good.”  I can only suggest that if this is something that concerns you or the Deaf sector that you work closely with the NDIA to raise your concerns.

What if I don’t want an NDIS package, can I still access NABS? – It is entirely up to the individual if they want to sign up for an NDIS package. The NDIS want to see Deaf people signing up for NDIS packages because these packages can offer more than just Auslan interpreting. For example individuals can purchase assistive technology or even upgrade hearing aids. However, beware that their are price guidelines for purchasing hearing aids and they may not cover the total cost of any aid that a person wants. There may be out of pocket expenses.

As of now, any person who chooses not to access  the NDIS, or is not in a region that the NDIS is currently rolligng out, can continue to access NABS as per normal. There will be no change immediately. HOWEVER, be aware that this may change after 2019 when the NDIS is fully rolled out. Remain diligent and raise any concerns with the NDIA. The NDIA are keen to work closely with the community to identify potential problems and solutions.

Also be aware that if an individual chooses to use an NDIS package then they must use these funds for private medical appointments. You will not be eligible for NABS services as they are currently offered. However, use of NDIS funds for private medical appointments must still meet the criteria currently established under NABS, but there will be limits. It will not change greatly except that Deaf individuals will be responsible for booking the interpreter. They will also have to decide whether to book an interpreter direct or go through an agency.

What if I am over 65 and can’t get an NDIS package? – All Deaf people over 65 can still access NABS as per normal.  Word from the NDIA is that after 2019 – ” As I understand they will continue to access the NABS program.”  I suggest that the Deaf sector need to remain diligent between now and 2019 to ensure that this remains the  case.

It is also worth noting that if any individual that receives an NDIS package before they turn 65 can continue to use this package or they can choose to receive support under programs that are provided for aging Australians.

What are the additional benefits of an NDIS package that includes Auslan interpreting? – The current aim of NDIS packages that include Auslan interpreting is to enhance inclusion. There is a great deal of flexibility for an individual to use their package. For example an individual may want to access a local yoga class. They can book interpreters for that. Or a group of Deaf people may want a personal trainer. They can pool funds to cover interpreting costs. Although they must pay for the personal trainer out of their own pocket obviously. There have been circumstances where individuals have used their packages to book interpreters to communicate with trades people in negotiating and carrying out home renovations. For parties, weddings and funerals the lack of an interpreter could be a thing of the past.

Whether or not the NDIS will think it’s acceptable to book interpreters for an appointment with a bank manager or a lawyer remains to be seen. They may see this as the responsibility of the bank or legal firm. Individuals will need to be clear on what is possible and what is not.

All of the answers to questions I have put together in this article and have been approved by the NDIA. I hope that in this way individuals can make an informed choice as to whether the NDIS will leave them better or worse off than the current system.

There are still issues we need to discuss such as ensuring the use of qualified interpreters so Deaf people are not put at risk. Agencies may also struggle as the going rate of $115 an hour is much less than they are charging now. The profit margins of agencies will take a hit in some areas. Already interpreters are expressing grave concerns about changes to the NABS pay structure.

As with any change there are positives and negatives. I urge everyone to find out all the information that they can before they reject the NDIS for medical interpreting outright.

I hope that readers find this information useful.

 

Between Two Worlds


tornThis morning I had a funny reminder of just how much information we Deafies miss out on when we integrate with the hearing world. I received a text from my wife, who is also deaf, telling me that we had won the tennis grand final the previous Monday. It is now Sunday and we had been crowned tennis champions for a week and we were blissfully unaware. I had received a text from the organizer congratulating me on our win. I had found this odd, because we rarely lose. As it turns out she was congratulating me on our grand final win and I had no idea.

I am sure our hearing colleagues who make up our team were chatting about the fact that it was a grand final. Not being able to overhear them meant my wife and I had no idea. Most likely they had congratulated us at the net, but my wife and I didn’t hear this either. So we finished the game and headed home. Where we live its freaking cold at night so I wasn’t hanging about. This little story is stark reminder of just how much information deaf people miss out on when they interact in the hearing world.

Hearing and deaf interactions came very much to the forefront recently when a young deaf woman contacted me. Her name is Sian and she is an interior designer. She was seeking advice as to how she might advance further in her career. As it turned out Sian was born into a hearing family and had been the youngest person ever to receive an implant back in 1990. She was just two and a half years old at the time. Four months after her surgery the implantation of young babies was approved by the US Food and Drug Administration. At 19 Sian had a second implant. Deaf babies now have bilateral implants, this was not an option back in 1990.

I will come back to Sian and her original reason for contacting me later. After I met Sian I asked if I could interview her for The Rebuttal. I sent her a list of written questions, which she answered for me. She also asked her mother for her views on some of the questions.

One of the questions that I asked was about the impact at the time she had her implant. Because she was a world first I wondered how people had reacted. Her mother had this to say,

 “Not long after Sian had the cochlear implant, we went to a camp for families with deaf children. Sian’s head was half shaved from the surgery with a massive scar, we wanted to connect with other deaf families but at this event we physically experienced the Deaf community turning their backs on us. This was one of our family’s first experience encountering the Deaf community. Sian was only 3 years old. We wanted to get an understanding of the Deaf community and what it would mean for her. Unfortunately this turned out to be a really negative experience. This was in the early 1990’s. This set the stage of our family not feeling welcomed by the community.”

I well recall this time. In the early days of the Implant some of the more militant factions of the Deaf community reacted savagely to any suggestion that deaf babies should be implanted. They called it child abuse. They screamed that parents were disfiguring babies. They screamed that parents were putting young deaf babies at risk. I vividly recall a prominent member of the Deaf community going on the Today Show to tell the world that cochlear implants had led to paralysis. (It as an over reaction to the fact that a few deaf people had suffered from facial paralysis as a result of the surgeon nicking a crucial nerve during surgery.)

It must have been a horrible time to be a hearing parent of a deaf child and trying to decide whether to implant your deaf child or not. Sadly, because Sian had been the first, her parents seem to have received the brunt of this negative reaction. As a member of the Deaf community I can only apologise profusely to Sian’s mother. I cannot imagine the pain it must have caused. Suffice to say that it was not until Sian was 14 and began to be involved with the Deaf community that the Deaf community began to accept her family.

When Sian contacted me she wanted advice as to how she could progress at work. She is very intelligent. Her spoken language is fantastic. Her written language is superb. She clearly has much to offer but for some reason she had not progressed as much as she wanted to at work. She had  basically been in the same role in all that time. She was not where she wanted to be in terms of her position and skills. She wanted to gain more in her position.  She recounted all of this to me, in tears and clearly very frustrated.

One day I went into my manager’s office and sat down, I told him I was frustrated at where I was and that I was not where I wanted to be. I was in tears, to the point of crying uncontrollably. I told him I wanted more, I compared myself to people I went to university with that have flourished in the industry that are doing extremely well for themselves, in magazine spreads, owning their own business etc; that I was no where near that. I aspire to be like my colleagues, I want to develop my skills and knowledge further, I want more exposure in the industry. I laid all my emotions on the table and my manager took this on board. To his credit, he has been wonderful. Since then, I have been given more than I ever had in the last couple of years, I am being taken seriously and continuously supported to help me to get to where I strive to be.”

Despite her ability to hear well, speak well, write well and do her job competently she had many frustrations working in a hearing organisation. For example she works in an open office that is partitioned off. She hates this because she cannot see any one. She does not know what others are talking about. She does not have access to peer learning nor the ability to be involved n the discussions that her colleagues are having. This is something that many hearing people do not get, particularly in a workplace. One of the ways that people get ahead in their career is simply by listening to what others have to say. In this way they contribute their own ideas and become involved in the DNA of an organization. If they cannot, they are often seen as being the quiet person, content in what they are doing.

The sad thing is that because not much thought is given to how to properly include a deaf person in these “Office Discussions” employers miss-out on the true value of a deaf employee. And as we can see with Sian it can hold back the deaf employee to the point of frustration. Said Sian,

Because I can speak and hear well, my colleagues tend to forget at times that I don’t always hear absolutely everything. The little subtle things can be a huge effort: phone calls; the intense concentration of listening/lip reading; the strain to hear talking across the office; I am proudly continually educating them about deafness and of my needs. Even having to make or receive phone calls have been a challenge, there are people that I can have a comfortable conversation with on the phone, but there are others that I cannot understand a word because of their gruffness in their voice or accents, or speaking too quickly or in particular background noise. I find knowing the context and knowing the voice helps to predict the conversation. I panic when the phone rings at work, I have all these thoughts running through my mind – who is it? What’s the context? What if I cant hear them how do I get out of it?”

 There is always the constant that the deaf employee must re-educate their colleagues as to their needs. Often hearing colleagues are very accommodating but when things get really busy they forget. We deafies constantly have to remind our hearing colleagues of our needs. It can be very tiresome and there are times we just do not have the energy to continuously remind people. Sian has these frustrations too,

“I also get extremely frustrated that I miss out on a lot of information that can float throughout the office, it could be a construction issue or issues with the builder, or any crucial information that would be valuable for my personal development as a designer. The only way I process information is by being told directly or visually.”

And we develop our own strategies too. Sian has some. We all know that the world is designed for hearing people. It often does not stop to consider the needs of Deafies (or any people with a disability) So what happens is we adjust. In Sian’s own words,

“But of late I have come up with a strategy – leave answering machine on so I can listen to the message to know who it is and what they want, I will then figure out if I am able to ring them back or simply email. This is something that I will be raising in my staff review soon. But if its colleagues interstate, I make the effort of telling them to communicate with me via Skype or email. I find this really useful.”

What Sian has described, I call Deaf Life Skills. We really need to teach them to our deaf kids.

In many ways Sian is fortunate because her employer is very responsive to her needs when she raises them. Sian explains,

“I made a point in a meeting that the office layout needed to be changed especially removing the partitions between desks so that I could have a clear view of people around the office so I could try and see conversations (where appropriate). My colleagues support this, it made complete sense to them and that they had not realised that this was a barrier for me. Despite my frustrations at work, any issue that I raise as a result of my deafness is taken seriously and acted upon. At present I am working on developing confidence around my self advocacy skills.”

 Even so, challenges remain for Sian despite the fact that she gets great benefit from her implants. I winced when she explained that she sits in meetings of up to twenty people. She copes by focusing on the people that talk the most but obviously misses out on much information. I was able to give Sian some advice on strategies to deal with such meetings that she is now following up. That is the value of having a good deaf professional network.

“I got some sound amplication devices that are supposed to be of help with certain situations at work but they were such a pain in the arse to get it working; I would have to stop, make all these switches to tune in – for an example if the phone rang, I would have to had to turn on my loop, press a button on my processor to tune into the phone – it was difficult to do this in a number of seconds the phone rings, it got stressful and frustrating. It also meant that it cut out background noise so I could only hear the person on the phone but I could not hear myself responding back, I would speak so loudly’ with colleagues around. There was another device that I got to help with meetings, it would pick up the person speaking and cut out background noise. But I found this not to be as good as it could have been. It would take ages for it to tune in and if I was to respond, I couldn’t hear myself or control my tone. It also didn’t necessarily pick up other people making comments in a meeting, I still missed out of information. These devices made it a hell lot more awkward for me. However I was luckily enough to get some other devices through a different brand which work a lot better, but the thing is I have to remember to make good use of them. Through out my hectic day, I have to remember that I have these devices that I can use that would help – but who thinks to drop everything in order to make things better for ourselves. It is an effort.”

I asked Sian about some of her experiences growing up. She was educated within a Deaf unit. During her primary and secondary education she generally received good support. She recalls her time at primary school as being very happy. She felt accepted by her friends and she felt just like any other student. Things changed when she attended secondary school. Secondary school brought with it a very different set of challenges. This is how Sian describes this time,

“Secondary school was more challenging. The hearing kids were older and came from different primary schools – mostly from schools that did not have a deaf campus so they would not have the understanding of deafness that the kids I went to school with had. I struggled with my identity, bullying and pressures to be ‘accepted’ “

Sian feels that she was lucky to be part of a Deaf Facility during this time. She saw the Deaf facility as her ‘safe haven’ . The deaf students of the deaf facility are friends right up to this day. But even so there were many things that frustrated her,

“Sitting in groups trying to follow the conversations; having to sit at the front of the class room to ensure that I don’t miss any information. I was encouraged to wear an ‘RF’ transmitter which I gave up in year 8 much to my teachers and parents annoyance (in hindsight would have made a difference). Being a teenager I didn’t want to be any more isolated than I already was, it was a struggle enough as it was.”

Sian has battled with depression throughout her teenage and adulthood life. Much of this related to the struggles and frustrations she faced being deaf. Some of her depression was related to personal issues that she doe not wish to raise here.

“Growing up I have always felt a bit isolated in the hearing world trying to fit in and with my on going frustrations, but then I discovered a whole other world – my identity went into overdrive. I am deaf but I am oral but was learning Auslan. Who am I? Which group do I belong to? The Hearing? The Deaf? The Oral? The Signing? In my twenties, I have come to realise that my world is a whole lot richer that I have access to all these groups. I don’t need to belong to just one group. I can move across these groups fluidly. Having said this, I embrace my deafness, this is who I am. Acceptance has been a long journey but I finally have arrived! My teenage years and early adulthood I suffered chronic severe depression, I was very unwell that I had to retreat to focus on getting myself well again.”

Sian’s experience of deafness and interacting with the hearing world is something many deaf people can relate to. It is not a world that is designed for deaf people, even with the most advanced technology. Sometimes I think we are often set up to fail. If we talk well, hear well and appear to be doing great at school, this is often seen as enough. The internal and external struggles that Sian describes are not something hearing people understand well. Her time at university will resonate with many deaf academics,

I had thought that University would have been a phenomenal experience and I had also expected to make some good solid friendships through out my degree. But it was nowhere near that. My peers were from all walks of life with, I am assuming, not much understanding of deafness. It appeared that they seemed hesitant to approach me because I had a notetaker on my arse, the other students may have not have understood the dynamics between the notetaker and me. They may have also not have understood why I had a note taker if I could hear and speak so well. When it came presentation time, I was worried maybe I would be presenting something completely different to the rest of the class. If I can’t hear or the strain to hear is too much of an effort, I zone out. It is exhausting. I tried my best to be like my peers. To say it was a challenge is an understatement. I wish there was live captioning when I was at university, this would have made a world’s difference to me.”

I asked Sian whether having a cochlear implant meant that many people often had unrealistic expectations of what she could hear and do. Her answer was revealing,

“We need to continually educate the hearing world that just because we have cochlear implants it does not mean that we have 100% hearing, that we are still deaf and we still require support and assistance.”

And we need to educate the Deaf world too. I am still cringing at the backlash that Sian’s parents must have received when they made the very difficult decision to implant her. There are still these elements of the Deaf community that aggressively slam parents of deaf children and the hearing world for pushing cochlear implants. Don’t get me wrong; I also get frustrated with a system that constantly peddles biased information. Even so hearing parents of deaf children are often unfairly targeted and this causes them great pain. Not only does it cause them pain put it also leads to them withdrawing and even shunning the Deaf community. This means that their deaf kids miss out on so many wonderful social opportunities. As I bring this article to a close I ask all my deaf readers to carefully consider this last statement from Sian’s mother,

 I wish now that Sian had contact with the deaf signing community earlier on and that Sian was accepted by them. Being marginalized by the signing community I think caused many problems. It created a situation of us and them. Unfortunately this meant that she was not able to experience being a member of the deaf community until she was about 14 when she became involved in the Deaf community and learned to sign. It was clear that it was what she needed because she flourished in this environment. I wished back then that the Deaf community embraced all people who were deaf or hard of hearing, those who spoke or signed. Considering what we know about the brain’s plasticity now, I may have looked at Sian’s communication needs differently. I may have considered using Australian sign language before Sian learned to speak. But I would definitely have continued with our oral crusade.”

 Food for thought?

Thank you Sian and her mum. It has been a privilege to write your story.

The Nyle Essay

NyleA really positive thing happened last week. Nyle won the American version of Dancing with the Stars. Fresh from winning America’s Top Model he went one further and won the Mirror Ball. He doesn’t even have a last name any more. He is just Nyle. “You know Nyle?” You can ask anyone and they’ll say, “Oh yeah that deaf guy.” Even the Gay Lesbian Bi Transgender Intersex community laid claim to Nyle as the first of their community to win the Mirror Ball. They did note that he was also the first Deaf winner too. The man can do no wrong.

We should celebrate shouldn’t we? I mean what an achievement for a deaf person to win a dance competition. It is said that Nyle and his partner developed a series of taps so that he knew when to do  his moves and to help with his timing. It’s an enormous achievement that shows Deaf people can do virtually anything. We should all party and remember this. But no. There has to be a fight. A fight about what? Well that hearing is better than deaf and visa versa. AGGHHHHHHHHHHHHH!!!!!

You see Nyle is a political animal. He is using his profile to promote the Deaf community and sign language at every turn. Good on him for that. He has a view that every child who is deaf should sign. He does not care whether they have implants or not. He thinks that they should sign. He wants the law changed, similar to what happens in some Scandinavian countries, so that every child diagnosed as deaf, implanted or not, be given access to sign language. He uses strong terms like language deprivation to put his point across. That is his right. He comes from a family that has 25  members who are Deaf. It is something that he is passionate about.

I am not as strong as Nyle about forcing kids to sign. It should be a parent choice. That’s just my view but I certainly can understand where Nyle is coming from. I certainly agree that sign language is enormously beneficial for deaf kids. I’ve worked in this area for nearly 30 years and I have witnessed and supported deaf adults who have been language deprived. It happens less now because the cochlear implant is leading to many kids developing great spoken English and English literacy. But it still happens.

Even so, these kids with implants can still benefit from sign language. But for me the key is language. There is nothing worse than a language deprived deaf adult. The great Oliver Sacks said of deafness and language deprivation, “A human being is not mindless or mentally deficient without language, but he is severely restricted in the range of his thoughts, confined, in effect, to an immediate, small world.”  

All too often I have witnessed this and it is for this reason I prefer all deaf kids to learn spoken language and sign language together. I believe that this helps to ensure that they develop the strongest language possible. But still it is the parents choice. One can only hope that professionals will advise parents of the benefits of bilingualism so that they may make their own informed choices.

But this stuff is old hat and has been discussed at The Rebuttal many times. In Nyle we have a wonderful human being. And yeah, as my wife and her besotted girlfriends will tell you, “He is hawt!!” We should be in awe and celebrating what he has done for people who are Deaf, people who are different and people who have disabilities. He is changing attitudes and the world. But no! We can’t do that because apparently Nyle’s form of activism is dangerous for the Deaf community. Say what????

Lisa A Goldstein said as much in her article, Nyle Dimarcos Activism is Dangerous for the Deaf Community. Goldstein is also deaf and believes that Nyle is misleading people. She asks the question, “Would your reaction change if you knew that Nyle could have heard the music if he had wanted to?” Well actually, no. Because he chose not to hear and he still won anyway, that’s amazing. Goldstein claims that Nyle chooses not to hear. She implies that if he had worn hearing aids, or if he had perhaps had an implant, that he could have heard the music if he wanted to.

Now Goldstein is implying that Nyle is misleading us. Hello Black it’s Pot calling.  She is implying that if you stick some hearing aids in Nyle’s ears or give him an implant he will somehow miraculously hear well enough to be able to dance in the same way as hearing people. Perhaps by hearing the music with his aids he would have danced even better. I am sorry Goldstein, but if you are going to imply that Nyle is misleading people don’t mislead people yourself.

We all know that what people hear with hearing aids or cochlear implants varies. We all know it depends on frequency losses, degree of loss, age of onset and a host  of other variables. What we also know is that people with cochlear implants get various degrees of enjoyment from music with their implants. Kate Gfeller acknowledges this in her essay, Music Enjoyment and Cochlear Implant Recipients.

She states that cochlear implants  can impact on the understanding of melody, harmony and tones in music. She acknowledges that other factors associated with hearing loss can have a negative impact on the enjoyment of music. Despite this she also states that many with cochlear implants get great enjoyment from music. But clearly that enjoyment varies. To imply that Nyle would hear just like every one else if we stick a couple of aids in him is misleading to the extreme. Bottom line, he won without sound anyway. Celebrate that. Nit picking is not needed.

Goldstein claims that Nyle is making inflammatory and misleading statements. I laughed at the irony of that. But lets look at what he is supposed to have done. Apparently Nyle has an extreme view of deafness. This extreme view of deafness is that he has chosen to be Culturally Deaf. Coming from a Deaf family he has had instant access to communication, family get togethers, conversations and just everyday things. He has wanted for nothing. He correctly points out that if he had been the one person in a hearing family he might have been isolated. It happens, it’s a fact. It certainly is not an extreme view. But Goldstein thinks it is because, cop this, she functioned well in a hearing family and therefore everyone else can too.

Well I am glad she did well, obtained language, is literate and functional. You would not want the opposite wished on her or anyone. But again she fails to acknowledge the diversity of experience and success of deaf kids in hearing families. Sure it is true, as she says, that kids with cochlear implants are learning spoken language brilliantly. She even cites research on the topic  showing that kids with implants who use auditory methods perform better than bilingual kids. Cool, well I’ll give you another. Lets look at relatively recent research by Lyness, Woll, Campbell and Cardin – 2013

Lyness etal acknowledge that cochlear implants have led to greater speech perception, far greater than for people who are deaf who do not have cochlear implants. This is well and great but they also acknowledge,

“Despite prevailing assumptions, there is no evidence to link the use of a visual language to poorer CI outcome. Crossmodal reorganisation of auditory cortex occurs regardless of compensatory strategies, such as sign language, used by the deaf person.”

More revealing they say,

“Imaging studies show that visual activation during speech reception over time following CI becomes more specific, suggesting that in the CI brain, auditory and visual information mutually reinforce one another.”

I am no expert in academic mumbo jumbo but this appears to suggest that learning speech and sign language together actually assists the child’s language development, certainly does not hurt it. This is just one item of research that I know of that refutes suggestions that kids who have cochlear implants, and who access sign language too, perform worse than kids who are exposed only to auditory verbal methods. Who knows which is right but if the esteemed Goldstein wants to cite particular research she needs to balance this up with research that suggests the opposite. To not do so is to exhibit the bias she accuses others of.

Either way academics make my head hurt. Know this – Kerridge, right now, anecdotally will tell you that kids who sign or kids who speak do brilliantly in equal proportion. Variations occur depending on the child’s access to a language model and other socio-economic factors including access to support and so on.

Let’s stop crapping on about one being better than the other, its rubbish. Each child will be successful depending on any number of factors and will have their own story to tell. What harm will learning sign language do to them? Well none – The harm is done when a child’s language development is hindered through lack of access to proper language models. So there – Kerridge told you.

Now thus far I have been quite civil to Goldstein. I am finding it hard to be so based on some of what she has said. I will remain so because I understand she has been trolled and abused for stating her view. This should never happen and those that abused her should hang their heads in shame. But there is one statement that she made that really riled me. She said this – “I am fully integrated into society. Someone who only uses ASL, like Nyle, can’t interact with society without help from others.” Let me say this to Goldstein, that’s offensive and absolute rubbish.

Firstly Nyle is already part of society. I am betting he goes to his local shop and orders a coffee without an ASL interpreter at his side. I am betting that he uses technology like emails and SMS to get what he needs, order pizza, get a taxi, book his own flights and so on. Probably not now, I would say he is doing pretty well and probably pays a manager or PA  to do those mundane things. But point is, Nyle is a fully functioning human being. He contributes and adds value to society. To suggest that he only does so with “help from hearing people.” suggests that Goldstein may have a very large chip on her shoulder.

Now when Nyle meets a hearing person, the hearing person wants something that he has. At the moment it is his enormous charm, good looks and talent. So he gets on TV and they pay him for it. Unfortunately these hearing people don’t know sign language and so to communicate with Nyle they have to book an ASL interpreter. Looked at in a different way, the interpreter is helping the hearing people. Dang pesky things these hearing people are.

But yeah Nyle has been getting the producers of various  TV shows enormous profits  BECAUSE HE IS GOOD! He is adding value and they need him. He could be a scientist who is deaf, a lawyer or computer programmer – Whatever – he brings value – equal to what any hearing people do. He doesn’t need help, he is the one with the power. The hearing people need the help.

And you know we deafies have so much power. Cochlear couldn’t be rich withouts us. Hearing aid companies make massive profits because of us. Captioning companies make massive profits and sign language interpreters are getting fed tonight on the backs of deaf people. There is a whole economy out there that relies on deaf people. Take them away and the world is poorer for it, not just for diversity but for dollars too. All I can say is that the relationship between a Nyle that uses sign language and any services or technology he uses to assimilate with society is a reciprocal and even relationship. Nyle doesn’t need help but by golly they need Nyle – Savvy!

One thing I do agree with Goldstein on is that it should be a parents choice. But parents should be aware of the choices. Likewise deaf people make their own choices. Goldstein prefers her oral club – both deaf and hearing it seems. Nyle prefers his community and wants to see more deaf kids learning sign so they can choose to be part of that community. That’s his choice too. These choices exists and and they are all viable choices.

Let’s also be clear that there are very few deaf members of the Deaf community who choose not to hear in total. Most like hearing but what they do know is that the Deaf community offers them more than a hearing community alone can. OK, Goldstein has not made that choice, good for her, but that is no reason for her to talk absolute rubbish and suggest that Nyle is misleading the people.

He is not. He is just talking about a viable alternative, an alternative that is of great value to many deaf people. And he is right, language deprivation can and still does happen, although thankfully it is much less now. Bottom line for me is that sign language will do no deaf kid any harm, whatsoever. In most cases they will get enormous benefit.

It all comes down to the strength of the language models that they are exposed to. If that model, be it spoken or signed, is not strong then language deprivation can ensue. Goldstein is wrong to deny that. For her to suggest that sign language might contribute to poor language development in a deaf kid is bordering on a lie.

Poor form Goldstein. That said I am sorry for all the abuse that you copped. People should play the ball not the person.

 

Audism in Your Backyard

audismWhat a week it has been. It started when I innocently decided to critique Edan Chapman’s article, We Are the Deaf. I thought it was a fairly measured critique but apparently not. Out came my mate Paul who said that by critiquing the article as I did I was the equivalent of the Alexendar Graham Bell Association, that bastion of oralism. On the other side of the coin some aggrieved parents labelled poor Edan mentally deranged and called me an anti-oralist. And then there was Jane who had this to say,

“An old classmate of mine saw you at the Deafness summit. He commented that you were possibly the only level headed speaker there and really appreciated what you had to say.”

From the Antichrist to a hero in 60 seconds. It was totally bizarre.

But anyway, as I do, I decided to write about it, particularly of the response of some parents at the Aussie Deaf Parent’s page. ( Not its real name, but they got upset when I used the real name.) Basically in this article I outed the abusive parents who attack anyone that expresses a view contrary to their own. Indeed my own wife, for venturing a balanced view, got asked in no uncertain terms to leave the group. This is in part what she said.

“.. As they grow older they develop more conscious, they become aware of the little incidents that may or may not deliberately exclude them. As you get older you get told no more. More barriers get thrown up. It’s exhausting. It’s exhausting and even the best hearing amplification and language skills are not always enough. Its not always easy being human, let alone a deaf human.”

So for this bit of personal insight she basically got told to fuck off. There is no kinder way to put it. In disgust she quit the group.

My article basically condemned the pack mentality. I asked that the “PACK” back off and not bully those whose views they found confronting. I then praised those who were more open minded and accepting of different viewpoints who are part of the group. The latter, I believe, are firmly in the majority.

It was then my intention to not write for a while. You see the response was just overwhelming. I did not know what hit me. And then they kicked me out of the group. The administrator  contacted me and said I had maligned the group and upset the parents, therefore I had to go. But the bullying and victimisation of people posting alternate views was left unaddressed. The whole thing is a fascinating study of Audism.

Audism is often seen as a dirty word. But what is it? Alex Jones in his Vlog for AI Media defined Audism simply as the world viewing deafness as bad. Jones describes other aspects of Audism where sign language is seen as inferior and speech superior. He describes how deaf people  have been oppressed over the years and made to speak, even banned from signing. This view of hearing as superior and deafness as an inferior and bad thing is what Audism is all about.

Audism is a very controversial term and one that really ruffles feathers. Indeed even our deaf organisations exhibit Audism. For example Deafness Forum currently have a very clever Hearing Health campaign happening. They want to see deafness listed as a health priority.

This campaign is not just about preventing deafness or fixing it but it is also about deaf people accessing the health system. This can be done by providing appropriate communication support and response to people who are deaf. As such it is a very broad campaign.

But even Deafness Forum pander to the masses. They know that to convince hearing decision makers to part with their money they must target what these decision makers know. Of course, by and large, decision makers are Audist. They see deafness as a bad thing. Hence Deafness Forum unashamedly use hearing and sympathetic/emotional imagery of kids hearing for the first time. Indeed the slogan ‘Breaking the Sound Barrier’ smacks of Audism.

For me this is almost like selling your soul to the devil. All it does is reinforce the stereotypes that we try so hard to breakdown. But  Audism takes no prisoners. It demands that deafness and all people deaf be eradicated.  If this is not possible then the unfortunately afflicted must fit in with the hearing norm. There can be no value in deafness for the Audist.

That  is how our society works. Everything is designed for hearing people with little thought to the needs of deaf, or any disabled people for that matter. A deaf person goes to hospital they are expected to hear and lipread. If they cannot often they get looks of pity or exasperation. Watch the nurses roll their eyes knowing that their time is going to be taken up with communicating with a deaf person. Watch doctors continue to talk even after you ask them to write. Watch the excuses about cost start to roll out once you ask for interpreters or captioning.  This is the attitude of an Audist society

This exists everywhere in all services and in education. Deaf have to fit in with hearing. Rarely is thought given to design of services so that all needs are met. Nearly every time it is about responding rather than being proactive. Not all the time – BUT JUST ABOUT EVERY TIME!

Understandably this small group of parents on the almost fictional Aussie Deaf Parents page, who all have deaf kids, are Audists too. I say understandably because for many their deaf kid will be the first time, ever, that they have experienced deafness. Understandably they want their deaf kids to be like them. They want them to experience all the things that they value. When they see their kids learning to speak and doing well they see their decisions being vindicated. I get that but deafness is such a broad experience. When the child leaves that protective environment of the family and the school, real life starts. It is not always pretty.

We deaf people know this and we want to help parents navigate this  minefield. We want them to understand what may happen in the future so that they may help their kids develop the life skills and resilience to deal. “BUT”, say these parents, ”IT’S DIFFERENT NOW. My kids school captain, my kids in the music group, my kids in the Footy team, my kid had hearing  friends for a sleep over last week… IT’S DIFFERENT. My kid thinks he isn’t deaf because deaf kids can’t speak and HE CAN!”

All these things happened in the past too. In the past and now there were and are successful deaf people. Tradesmen, teachers, lawyers, doctors, architects, social workers and even nurses. Deaf people have been successful since forever. BUT, by and large, they had one thing in common, they worked doubly hard to get where they are. They had barriers, attitudes, discrimination and prejudice to deal with. Everyday they deal with this almost everywhere that they go.

That does not mean they are all basket cases, though for sure many become that way because they struggle to deal with this crap on a daily bases. It means that they know how to deal with the crap and there is so much parents and deaf kids can learn from deaf people that have walked the talk.

To cut them off because one finds their experiences as too confronting is just denial, and that is not the name of a river in Egypt. But that’s Audism for you. To those parents I say, again, open yourselves to the experiences of deaf adults both good and bad. It may well be the best thing you ever do for your deaf kids.