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Coming Out Fighting - 15 May 2012

On 14 May 2012 the Melbourne Herald-Sun published a very long attack on Anne McDonald, Rosemary Crossley, the Anne McDonald Centre, and Facilitated Communication Training. The journalist was Andrew Rule.

Rosemary was offered a chance to submit a short OpEd piece for publication on the following day, Tuesday 15th. Here it is, before the cuts imposed by the subeditor.

Anne with ministers

Anne McDonald had severe athetoid cerebral palsy. She couldn’t walk, talk or feed herself. As she wrote,

I went to St Nicholas Hospital when I was three. The hospital was the state garbage bin. Very young children were taken into permanent care, regardless of their intelligence. If they were disfigured, distorted, or disturbed then the world should not have to see or acknowledge them. You knew that you had failed to measure up to the standard expected of babies. You were expected to die.

St Nicholas was a nightmare. Children with severe disabilities starved in state care, ten minutes’ walk from Parliament House. They lay on the floor, with no therapy or education, no personal possessions, no toys and no affection. None could talk. They saw things no child should see. Nobody seemed to care.

In 1977, when she was sixteen and weighed 13 kg, I found a way for Anne to communicate. Because of her physical disabilities, she needed support to lift her arm – a technique later called facilitated communication, or FC. It was easy to deny her communication, until the Health Commission asked two senior independent psychologists to test her using written material I hadn’t seen. They reported “she did indeed answer the questions, and in each case, had read the material and questions.”

After fighting her way out of St Nicholas in 1979, Anne McDonald lived with Chris Borthwick and me for thirty-two wonderful years before her death, much too young, in 2010. She loved art galleries, the opera, foreign travel, and drinking with friends. We loved her wit, her courage, her insight, and her enjoyment of life. We still miss her terribly every day.

Andrew Rule thinks I’m a charlatan who manipulated Anne for thirty years to make it look as if she was communicating when she wasn’t. Well, I’m a big girl, and Anne is dead now and can’t be hurt any more.

There’s not much point in retracing events at St Nicholas, if only because Anne and I wrote about them in Annie’s Coming Out (available for free download from www.annemcdonaldcentre.org.au - this site. Search Annie's Coming Out). Yes, Anne was a remarkably quick and able student. Her progress would have been more believable if she hadn’t been, but she was. When Anne made an accusation, whatever I thought, it had to be reported to the proper authorities. That was and is the law. Anne passed stringent tests with psychologists and in court – tests that Rule completely ignores - till she thought she’d done enough. Then she stopped.

There isn’t space here to refute everything in Andrew’s lengthy article, so a full response, with citations, will be available on this site.

What counts now, and what has always counted, is that everyone without speech receives the help they need to communicate. Five important points:

Facilitated communication rests on a sound scientific footing. The largest studies (Cardinal et al, 1996; Bernadi & Tuzzi, 2011) found clear evidence validating the facilitated communication of more than 70 people.

Anne McDonald could communicate. She proved this beyond dispute in the Supreme Court of Victoria by passing a message that I hadn’t seen in front of the Court’s Senior Master (Dwyer, 1996).
Usually Anne needed someone to support her arm so she could point to letters, but for some years in the eighties she used a rod on a headband to type without support. It was slow and painful. She gave it away after doing some TV interviews to show she could type.

To find out whether facilitated communication works, ask those who’ve become independent typists (or in some cases even able to learn to speak) - people like Jamie Burke. In 1992 Jamie was a non-speaking wriggly 5-year-old with severe autism. After I sat on him (literally) and held his wrist to make him stay still and focus, he learnt to type. As a teenager he started to type independently and to read out his typing. He’s now about to graduate university. Jamie and friends can be seen in the video Here We Are World (Google Video). Again, the achievement of independence has been repeatedly documented in the academic literature (Bernadi & Tuzzi, 2011).

Some accusations of abuse conveyed through facilitated communication have been confirmed by the courts (Dwyer, 1996), but more have been rejected (as is the case for all abuse allegations; Botash et al, 1994). There’s now a protocol for handling allegations made through FC. Sadly it’s not always followed, with sometimes disastrous results. The remedy, though, is to do it right, not to gag people.

The Anne McDonald Centre sees people with little or no speech with many diagnoses. We recommend all sorts of remedies. We don’t just use FC. Many people we see can point independently, and they’ve still gone five, or twenty, or even seventy years without anybody offering them a communication device. It’s easy for carers and teachers to overlook the possibility of using technology like iPads to replace speech.

If you know someone who can’t speak, don’t assume anything about their intelligence. Read to them. Offer them opportunities to choose. Develop their pointing skills. Stand up for their rights. Don’t let them get discouraged. Remember Anne’s words from her plaque in Melbourne General Cemetery:

If other people without speech
are helped as I was helped
they will say more than I could say.

Free the still imprisoned!

ABC TV - 7.30 Story - March 13, 2012

On 13 March 2012 the ABC's 7.30 program put to air a segment on Facilitated Communication Training. In response, the Centre issued a statement, which can be read in full here. We apologise to the people without speech whose communication was unjustifiably called into question by the program.

The Centre Relaunch - November 13, 2011

On November 13th we celebrated twenty-five years of the DEAL Communication Centre, and we changed its name to the Anne McDonald Centre to celebrate the work of Anne McDonald, who died suddenly late in 2010. So we had a party... with cakes and balloons...

And speeches.

Here's the inspiring address from Maree Ireland (above), Australia's first non-speaking lawyer.

Good afternoon. My name is Maree Ireland and I have the privilege of been asked to be involved in the opening of the Anne McDonald Centre. However, this does have an element of déjà vu, as I was also privileged to be involved in the opening of the DEAL Centre almost 25 years ago.

25 years ago – 1986 – I had decided to leave a Scope sheltered workshop and had started volunteering as a teacher’s aide at Dame Mary Herring Centre. If only I had had communication technology of today, for example, a version of the Lightwriter or any other machine that “talked.” It would have made communication so much more effective and easier. One of my roles was to hear people read and correct their pronunciation – rather difficult with a Canon Communicator, which only produced long strips of paper tape.

I then started a five year journey doing a Law/Arts Degree at Melbourne University with a Canon Communicator. Although most tutors and a few students were receptive of my communication I remember one incident where I had to participate in a moot court as a lawyer. Students verbally presented their submissions to the mock court. I had arranged with my tutors that I would write my own submissions and have a fellow student read them out for me. However, the Law Students Society objected saying it would give me an unfair advantage. Needless to say, the objection was quickly laid to rest.

After completing my Law Degree, I then attended Leo Cussens Practical Training College to gain my Articles. At this time I was using a Memo Writer (which produced wider strips of paper) with the backup of the Canon Communicator. A few students became friends and accepted my way of communication. Half way through the year I was fortunate enough to be able to trial a Lightwriter with Dectalk for 6 weeks. The difference in my acceptance was amazing. People who never talked to me started talking to me; I was able to participate in classes more effectively. After my 6 week trial was up I had to return it and students tried to fundraise and advocate on my behalf to gain a Lightwriter. Unfortunately funding only came through in the last week of the course.

Yes, it is 25 years ago and for some, we were a lot younger then but hopefully we are now a lot wiser -- or are we?

I would just like to take a few minutes now to reflect on what has changed for the better -- and what has not changed for the better -- for people with little or no speech.

Over the last 25 years we have seen great leaps and bounds in the area of technologies to enable people with little or no speech, like myself, to communicate and be heard and listened to respectfully.

Fortunately, for myself I am able to access technology independently. But I cannot imagine the frustration of not being able to access communication devices on one’s own or losing the physical ability to access a device. This is why the development of facilitated communication was a vital breakthrough in assisting people like Anne to communicate and achieve all that she did.

Despite the cynicism around facilitated communication, the DEAL Centre has been able to assist people to communicate effectively.

Another change has been the growth of human rights legislation in the area of disability where the intention is to enshrine in law the rights that everyone here has - for example, the right to shelter, and food, and all the other rights that most people take for granted, including the right to communicate – and to extend them to people with disabilities.

Despite these two great improvements, -- in technology and in law – something that has not changed for the better is the continued unwarranted and underlying scepticism, fear, tension, or just plain ignorance, that people who use facilitated communication are still not communicating and are not treated with respect.

I have seen a number of people who started communicating through the assistance of facilitated communication who have moved on to communicate independently. For example, Lucy Blackman, who started to type on a Canon Communicator with facilitation when she was 14, now has a Masters Degree, has written a book, and types independently. And there’s Penny Clough, daughter of my old teacher Mary Clough, who lost her speech and became a quadriplegic following an attack of encephalitis. Ten years later, to everyone’s surprise and the scepticism of many, she started to communicate again by spelling with facilitation. In Penny’s case the scepticism was laid to rest when she unexpectedly regained her speech after 4 years of facilitated spelling. She then went on to regain her typing and handwriting skills.

Yet there are still people out there throwing doubt on peoples’ ability to communicate with the assistance of facilitated communication. Sometimes this doubt and opposition is straightforward through written articles full of mistruths and just plain ignorance and maybe fear of what people might say. Then there is the underhanded opposition where people who need facilitated communication are “forbidden” to see the people who assist them. Yes, “forbidden” (in this day of human rights) - forbidden to do what they want, either through policy direction, family direction or service direction. I’ve heard of people even having their communication device taking away from them and being left alone in their room with no means of communication – yes, still, in this age of human rights.

So there is still a need to fight for the right to communicate, which brings me to the name change to the Anne McDonald Centre. You see, when I, and most of us who really knew Annie, think of her, we think of her as the Personification of de-institutionalisation and the fight for the right to communicate.

At the start of this speech I asked “Are we any wiser 25 years on?” Let’s hope, through the memory of Anne and her fight for the right to communicate, that those who are not wise will wake up from their stupidity and recognise the need for facilitated communication and the work done by the now Anne McDonald Centre.

Facilitating Communication, Changing Lives

DEAL Communication Centre (now the Anne McDonald Centre) has been providing people with little or no speech with the tools for self-advocacy for twenty-five years. One of the tools we've developed over that time is facilitated communication training (FCT), which we use with some people who have difficulty pointing and making the sequences of controlled movements needed to create sentences on communication aids.

In FCT literate students are given support to access keyboards while they acquire the hand skills and co-ordination necessary for independent typing. At the same time they learn to use AAC strategies requiring single selections such as Yes/No and multiple choice independently so they are not totally dependent on facilitation. The method has been successful for many people and is used around the world. Some agencies call it supported typing.

Recently I attended the Communication and Inclusion conference held at MIT in Boston where three hundred people came together to hear about the latest developments in facilitation research and practice. The conference was dedicated to Anne McDonald.

jamie

The first keynote was delivered by Jamie Burke, a young man with autism. Jamie started to learn to type with facilitation aged 5, and now types without support. He started to speak at age 13 after getting a Lightwriter which said what he typed. Jamie's now 22 and in final year uni. He read his presentation fluently and then took questions, typing complex answers quickly and independently and reading them out.

Arriving back with new ideas for using the i-Pad to develop hand skills, new DVDs of people typing independently, and new validation research involving eye-tracking, to be greeted by a campaign against facilitated communication which appears to rest on data from the last century was a shock. To put the record straight, attached is a list of articles, books and videotapes, including research studies that validate facilitated communication.
[Please see Attachment #1 - Select Bibliography of FCT].

Like any therapeutic strategy, facilitation may be misused, but there's ample evidence to support its effectiveness when best practices are observed. Because journal articles only get you so far, the best evidence for the value of facilitating communication is the people who have used it - real people, communication aid users whose lives turned around once they could demonstrate their competence, first by communicating with support and then by acquiring through long practice the hand skills needed to use communication aids independently.

Lucy

Lucy Blackman, above, is featured on the Queensland Department of Communities calendar for August 2011. (Please see Attachment #2 - Lucy's Story Aug 2011). She's just one of many - and, luckily, the technology is now available for you to be able to see them.

Have a look at Here We Are World, a video of a conversation between five adults with ASD at an earlier conference, and enjoy their wit and humor (Jamie Burke, mentioned above, is one of them). It can be seen on the Home Page of the Institute of Communication and Inclusion at Syracuse University, along with other videos about facilitation leading to independent communication aid use: soeweb.syr.edu/centers_institutes/institute_communication_inclusion/about_the_ici/Videos.aspx

The five adults who now converse so readily all started to communicate by using keyboards with hand support, and took many years to achieve their current skills. The two older men starred in the recently released full-length documentary Wretches and Jabberers, chosen by the Autism Society of America as their flagship for Autism Awareness Week 2011. The trailer and purchase details can be found at www.wretchesandjabberers.org
Copies of Wretches and Jabberers are available for short‐term loan from Deal for people living in Australia. If you email dealadmin@ozemail.com.au with your postal address we'll put you on the list.

In the end, though, the most important thing about communication is the power that it gives. That's why everyone should have the right to communicate using the tools that suit them best. Sadly people who cannot speak are just as vulnerable to mis-statements and mis-assessments today as Anne McDonald was in 1979. There's a lot to learn from her experience. (Please see Attachment #3 - A Lesson from Annie).

Anne Anne McDonald 11.1.1961 - 22.10.2010

If you would like more information on FCT please read the short outline of FCT at

www.annemcdonaldcentre.org.au/facilitated-communication-training

Facilitated Communication Training, a textbook about the use of facilitation, is also available on the website:
www.annemcdonaldcentre.org.au/node/39/edit

Breaking the Silence, a short video clip of children just starting to use communication aids, with and without facilitation, may be viewed on the Home page. The full version, 17 minutes long, may be ordered from the www.annemcdonaldcentre.org.au/our-resources

If you have any questions please email us on admin@annemcdonaldcentre.org.au

Rosemary Crossley

November 2011

WRETCHES and JABBERERS

Premiere in Times Square NY on April 1, 2011

Wretches and Jabberers is a full-length doco featuring the communication odyssey of two men with autism who cannot speak, and who have learned to communicate by typing. They travel the world meeting other adults with autism who also use keyboards to communicate. Some participants type independently and some still require some facilitation, but they all report similar difficulties with discrimination and isolation.

All the keyboard users shown only started to communicate as teenagers or adults, using methods developed at Deal.

Chammi Rajapatirana talking with his mother in Sri Lanka

See the trailer at

www.wretchesandjabberers.org

To read a longer story about the movie go to

www.examiner.com/dc-in-national/wretches-and-jabberers-documentary-opens-april-1-for-autism-awareness-month

A NEW DEAL

At the Annual General Meeting on November 30th, 2010, the Deal membership resolved to change the name of the communication centre to The Anne McDonald Centre, with the line below reading A new DEAL for people with little or no speech. The change will be implemented during 2011, 25 years from the opening of Deal as Australia's first centre solely devoted to the needs of hearing people with little or no speech.

ANNE McDONALD 11.1.1961 – 22.10.2010

It all began with Anne McDonald. Back in 1977 Rosemary Crossley began to establish communication with a small group of children at St. Nicholas Hospital – the Beanbaggers (so called because the hospital had no wheelchairs so they all sat in beanbags), led by Anne. The Health Commission, who ran the hospital, did not take
this well. Rose needed help, and we formed the Beanbaggers’ Support Group. For a body that was asking governments for large sums of money that name lacked dignity, and in 1979 we changed it to DEAL (Dignity, Education, Advocacy and Language ‑ A New Deal for the Handicapped). In 1979, too, Anne fought her way out of St. Nicholas, and joined the committee of DEAL as our first consumer representative. She remained on the committee for thirty-one years.

In 1980 Anne and Rose published Annie’s Coming Out, the story of how Anne had struggled through to literacy and autonomy. The methods described there were the foundation of DEAL’s work with successively more groups of people with little or no speech. People with acquired brain damage, people with Down syndrome, people
with autism, and people diagnosed as having intellectual disabilities responded to the teaching strategies and positive expectations developed with Anne.

Annie’s Coming Out was made into a film in 1984, raising awareness across Australia and around the world of the needs and the potential of people without speech. In 1985 DEAL won state and federal government funding to set up the DEAL Communication Centre, to see clients and to change the system and to advocate for those who had no voice of their own.For the next twenty-five years Anne McDonald threw herself into DEAL’s work, writing articles, giving papers, and working with other activists to ensure that the human rights of people with disability were not overlooked. In 2008 she was presented with the National Disability Award for Personal Achievement at
Parliament

i-COOL COMMUNICATION
The Proloquo 2 Go:
AAC at the iStore
WARNING – most of this article is based on the Proloquo2Go web site. As with any communication aid, it’s important to try before you buy!

AAC in your pocket

One of the problems with technology for people with disability is that it has to contend with Moore's Law. Moore's law is, roughly, that the power of computers doubles every two years. This means that people who produce equipment specifically designed for people with disabilities must expect that by the time they get through the process of design and production they're going to have to compete with PCs that have twice the capacity of the ones they were looking at when they started. By the time the equipment has been marketed and debugged (in that order - small manufacturer's simply can't do the amount of testing necessary to release perfect products), not to mention prescribed and trained with, the general purpose computer will have made still more strides.

The latest demonstration of the speed of advance of general purpose computing is an AAC program designed for use with the iPhone or iPod Touch.

According to the manufacturers, Proloquo2Go™ is a new product from AssistiveWare that provides a full-featured communication solution for people who have difficulty speaking. It brings natural sounding text-to-speech voices, up-to-date symbols, powerful automatic conjugations, a default vocabulary of over 7000 items, full expandability and ease of use to the iPhone and iPod touch.

Its obvious selling point is price. iPhones are not cheap, but they're a lot cheaper than most dedicated AAC devices, which can run over $Aus10,000 for aids which combine dynamic screens with the ability to speak what the user types. The software, too, is not expensive (for this field). The company's press release stresses the cost advantage:

AssistiveWare today announced the release of Proloquo2Go for iPhone and iPod touch. Proloquo2Go is the first full-featured communication solution for people who have difficulty speaking not costing thousands of dollars. Finally, powerful augmentative and alternative communication (AAC) comes within reach of consumers and schools without access to funding. Never before was using a communication device so portable and so cool as with Proloquo2Go and the iPhone or iPod touch. Proloquo2Go is a true break-through in price and technology, bringing natural sounding text-to-speech voices, up-to-date symbols, powerful automatic conjugations, a default vocabulary of over 7000 items, full expandability and extreme ease of use to the iPhone and iPod touch.

Proloquo2Go is a perfect solution for anyone who cannot afford spending thousands of dollars on an Augmentative and Alternative Communication device and yet wants a solution that in terms of sheer communication power and ease of use rivals solutions typically priced over 10 times as high. It is also perfect for teenagers and young adults who want a device as cool as the iPhone or iPod touch. Not to mention, this a great solution for children and adults with autism, cerebral palsy, down syndrome, developmental disabilities, or apraxia. Proloquo2Go can also serve adults with acquired disabilities such as ALS, stroke or traumatic brain injury. It can be a useful solution in hospital and rehabilitation settings.

"The price is so compelling," said Dan Herlihy, owner of Connective Technology Solutions, "and the software and hardware platform Proloquo2Go runs on so radically improved over current devices in its category that if not quite a paradigm shift, markedly raises the bar for accessibility, ease of use, and affordability."

"When we set out to design Proloquo2Go we knew we wanted to provide the kind of power typically only found in desktop applications," said David Niemeijer, AssistiveWare's CEO. "The iPhone has allowed us to do just that, develop a full-featured, fully customizable communication solution that fits right in your pocket."

For more information, screen shots, tutorials and videos visit the product site www.proloquo2go.com

Yes, the bar has been raised - if only on cost. We should welcome this new and fierce competitor to the AAC equipment scene.

As with any AAC device it’s important not to buy before you try. Many potential users will not be able to handle the small buttons and will find the changing screens hard to navigate.
But this is about to change. On January 29th 2010 Assistiveware said that
On Wednesday, January 27th, Apple announced the iPad, a device with a 9.7-inch (diagonal) LED-backlit glossy widescreen multi-touch display. Proloquo2Go, along with most of the 140,000 iPhone apps will run on the iPad. Current Proloquo2Go users will be able to download Proloquo2Go to the iPad once the iPad ships at the end of March.

Now PL2Go will really take on the big boys.

Chris Borthwick
February 1, 2010

Anne McDonald Centre. 538 Dandenong Road, Caulfield 3162 Victoria, Australia Ph: 03 9509 6324, Fax: 03 9509 6321

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