Aphasia

PURRING ALONG
Are you brainy? I expect so. Communicative? Of course you are. Do you know why you can read this? Correct: the language centres in the left hemisphere of your brain are purring along nicely. Truthfully now, do you think you could write a better intro than this? I see, good self-esteem then. Any signs of depression? What, none? And you enjoy playing with words, don't you? Yes. Right handed? Same. 

What happens if we brainy, knowledgeable, confident, critical thinkers, we communicative, literate, opinionated, optimistic right handers have a stroke, a bad hit on the head, a tumour, a gunshot wound, or some other trauma to the left side of the brain, and the injury damages our language centres? Nearly all of us will get aphasia that's what. And about half of all left handers will too. 

WHAM!
The incidence of stroke, which can of course happen at any age, increases as we get older. The risk doubles each decade after 55, with about 72 percent of strokes occurring after you turn 65. Makes you think. Just as you're reviewing your life achievements and settling happily - or perhaps under protest - into the big retirement plans, WHAM! 

If it happens to us, we will still be a brainy lot, still have opinions, knowledge, attitudes and preferences. But our capacity for communication through speaking, listening, reading and writing will be impaired, the probability that we will experience depression will increase dramatically, and our lives and how we and others view them, and our perceptions of ourselves, will have changed. A lot. We might want to, if we could, write about our experiences.

WHAT WOULD HE SAY IF HE COULD SPEAK?
The Internet abounds with first hand accounts of stroke survival by people with both left and right hemisphere lesions. Those that focus specifically on aphasia promote a range of reactions. Sheer outrage is the immediate response to stories that betray a heavy, patronising or exploitative editorial presence. 

Bev's poetry and Bil's story have an authentic ring to them, but elsewhere on the Web there is sometimes a sense that a poem, story or quotation is being imposed on the purported "author" by someone with superior writing skills, or by someone with a condescending air of, "What would he say if he could speak?" As well, one is frequently left with the feeling that something has been posted to the Net without the person behind it really understanding what that means in terms of personal disclosure. 

It's definitely not all bad news, however, and some of the best material on the Net is home grown in client advocate and support groups, like the one in South Australia .

AUSTRALIAN STORIES
Devoid of literary device, and somehow the more powerful for it, are the simply expressed stories of David, Bunt, Betty, and others of the Talkback Association for Aphasia in South Australia, and Gordon and his associates from the University of Queensland Aphasia Groups.

By contrast, the adjectives flow in author Penelope Nelson's personal and eloquent memoir of her father, wordsmith and journalistic legend David McNicholl, and his experience of aphasia.

FAMILY
In keeping with contemporary thinking about life participation approaches to aphasia therapy, identity-based therapies, and person-centered practices both the Queensland and the SA sites, and the Nelson article, are as much about family members as they are about the people with aphasia. Clive's story, for example, is illustrated by him and written by his wife, Carol. Without falling into the trap of hijacking his identity, she writes, "Dreams are something that for the past 10 years both Clive and I have worked so hard towards. They are imperative to our survival!" 

APHASIA FRIENDLY
What is so impressive about both the SA and the Queensland web sites is their serious, and largely successful dedication to making the web experience for their visitors aphasia friendly. The Queensland site provides a free Internet training package for people with a communication or literacy disability, listing the four main features of an aphasia friendly web site, which are: to write in simple words, using big print; to use lots of white space; to use pictures to help explain the words; and, to allow more time to read. [This excellent Queensland site is no longer available]

Simple? Not really. Guidelines such as these pose very real hurdles for web developers who still have to produce attractive looking, high quality, well-designed  pages that will engage visitors' attention, look good in any browser, and at the same time incorporate an effective and intuitive navigation structure. No mean feat.

RESOURCES FOR CLIENTS and FAMILIES
At a local level in the UK the Interact Reading Service, whose patrons are Sir Alan Ayckbourn, Alan Bleasdale and Richard Briers, provides a live and interactive reading service, provided by over 120 professional actors, for people in Britain who have had strokes. More internationally, many people with aphasia participate in the Aphasia and strokesurvivors discussion groups.

RESOURCES FOR STUDENTS and CLINICIANS
According to Sally Byng "...clinicians are often left to deal as best they may with complex, distressing, interdependent, and sometimes impenetrable effects of aphasia." So it's good to know that the Internet has much to offer practitioners looking for books, software, historical and up-to-date information about clinical aphasiology, the latest aphasia research, practical guidance such as the paradoxically titled how I run an aphasia self-help group, as well as the abundance of journal articles, online discussions, listservs and networking opportunities available to ASHA members and affiliates.

CONGRATULATIONS
Speechwoman's Site of the Month for June 2004 is the Talkback Association for Aphasia Inc. Congratulations Clive and Carol, David, Bunt, Grant, Betty, Marilyn ... and friends. 

MORE APHASIA  LINKS
Shirley Porus
The long journey back