Crossley, McKay and Biklen, from ABC Ramp Up 24 May 2012, reporter Stella Young.
Following Andrew Rule’s feature on the relationship between Rosemary Crossley and Anne McDonald in the Herald Sun in recent weeks, Crossley and her supporters want to set the record straight.
Editor’s note: Herald Sun journalist Andrew Rule’s three part feature on Rosemary Crossley and her relationship with the late Anne McDonald painted a damning picture of both women and the communication methods they used for many years. All three parts of the feature are available here
Rule also published “Rosemary Crossley defends her methods”, an interview in which Crossley is minimally quoted. Crossley later wrote an op ed for the Herald Sun seeking to defend herself and also McDonald’s legacy. The Herald Sun published an edited version of that piece; we have published it in full. Ramp Up has also received copies of two Letters to the Editor of the Herald Sun that were not published. All three pieces are published below.
We feel that publishing these pieces in full gives a valuable insight into facilitated communication, and the role it played in Anne McDonald’s personal and professional life. It also raises questions around the right to retain the legacy you earn in life, and how, even in death and despite proving herself over and over again, McDonald’s intelligence is continually questioned.
Coming out fighting, by Rosemary Crossley
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 just 13 killograms, 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 myself and my partner Chris Borthwick 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 – she 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 here). Yes, Anne was a remarkably quick and able student. Her progress would have been more believable if she hadn’t been. 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 – until she thought she’d done enough. Then she stopped.
There isn’t space here to refute everything in Rule’s lengthy article, but 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 learned 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. 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 is 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!” – Anne McDonald
Letter to the Editor, Herald Sun from Ros McKay, Anne McDonald’s youngest sister
I am Anne McDonald’s youngest sister, Ros. I am the only family member who chose to become involved with Anne after she began living with Dr Crossley, and consequently I had the privilege of getting to know my sister for the last 16 years of her life.
Facilitated communication (FC) is not fantasy and is not a skill obtained overnight or on demand. It is something that varies from one person to the next, depending on their disability. Success in using FC can be affected if the person communicating is experiencing spasms or pain, is tired, or is not ready or wanting to speak, the same as any able-bodied person. FC can be physically draining and nerve racking for the person communicating. It requires patience and consistency from the facilitator and the person communicating, over a period of time.
Anne’s ability does not automatically prove other people’s abilities but I can verify my sister’s. I communicated with Anne using the alphabet board. This was no fairytale.
I am deeply grateful for Rosemary’s and Chris Borthwick’s involvement in Anne’s life. They have proven to be good stewards and became Anne’s cherished friends.
I am not a doctor, psychologist, lawyer, speech therapist or policeman – I have no letters after my name: no career to bolster, no book to write, no face to save. I know what I know because I turned up and kept trying.
Letter to the Editor, Herald Sun from Professor Douglas Biklen, Dean of the School of Education, Syracuse University
Shame on Andrew Rule for conducting a crude and ignorant editorial assault on Rosemary Crossley and Anne McDonald. Rule accuses Rosemary Crossley of peddling “false hope to the broken hearted.” He calls facilitated communication “not so much pseudo-science as pseudo religion.” My response to Rule is: read the research!
There is an extensive body of research literature in which the method has been validated, including:
research that involves video eye-tracking showing that the subjects gazed at letters sequentially before ever moving the hand to type them (Grayson, Emerson, Howard-Hones & O’Neil, 2011) and documenting the different pace of typing by subjects even when they had facilitators in common;
linguistic analysis demonstrating that the individuals with disabilities employ significantly different patterns of word use than their facilitators and that they were different from each other even when sharing the same facilitator (Zanobini & Scopese, 2001; Tuzzi, 2009)
evidence of speech before and during typing (Broderick & Kasa-Hendrickson, 2001; Kasa-Hendrickson & Broderick, 2009), and
message passing, where individuals demonstrated authorship by conveying information that was masked from the facilitators (Cardinal, Hanson, & Wakeham, 1996; Sheehan & Matuozzi, 1996; and Weiss, Wagner & Bauman, 1996).
True, facilitated communication has many detractors as do people with disabilities. And indeed there are a number of studies that have critiqued the method. Quality journalism would examine the research, for and against, and seek out the complexity of what is a fundamentally important topic. Any careful discussion of the science would reveal that none of the research that critiques the method negates the research in which people with disabilities prove their competence.
Similarly Rule’s brutal attack of Anne McDonald’s competence cannot erase the fact that she proved her competence before a judge. And it is because of Anne’s groundbreaking role that today there are numerous people who have learned to communicate via facilitation and are now able to type without physical support, like Jamie Burke (see Biklen & Burke, 2006) and Sue Rubin who was the writer of the Academy Award nominated documentary about her life, entitled Autism Is A World (2005).
Frankly, I am shocked that Rule is so incredulous that people with cerebral palsy could be literate. Many literate people with cerebral palsy have deeply impaired speech like Anne McDonald. One would have thought that such prejudice was a thing of the past, that knowledge of trailblazers like Christy Brown (My Left Foot), Christopher Nolan (Under the Eye of the Clock), and Dan Keplinger (King Gimp) would be enough to have educated the world, especially journalists, to know that great difficulty with speech is not evidence of a lack of intelligence.
Perhaps I should not be so shocked at this latest assault on competence in a disabled person, after all, many others before her have had their competence ignored and disputed. Even the now-lionized Helen Keller was in her own lifetime deeply questioned about her communication and literary abilities (Hermann, 1999).
I knew Anne McDonald for more than 20 years, had dinner with her on many occasions, invited her to present at conferences in the U.S., saw her use her communication devices in social as well as professional settings, and came to know her humour, her insights, and her leadership in disability rights. Nothing you can say about Anne will diminish her stature as hero and role model for people who are fighting to have a voice.
Professor Douglas Biklen
Dean of the School of Education