Loud 'N Clear: The SD Newsletter

Volume 1, Issue2 September 2002

                   

Quarterly newsletter of Speaking Differently - A national organization for persons with disabilities who communicate in different ways.

 

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PRESIDENT’S MESSAGE

                    By Anne Abbott

 

Well, it's September now, and inevitably, that means that fall isn't far behind. And, just like the changing of the seasons, Speaking Differently has new and exciting changes to report to you.

At our most recent executive council meeting we unanimously decided to target not only adults with communication limitations but children as well. By reaching out to parents and their children, we hope to give them support, recognition and information. Lowering the age limit of our organization will raise our expectations and goals. Another change that has taken place is our address. Our new address is:

Speaking Differently
Rehabilitation Sciences Building
University of Toronto
Department of Speech-Language Pathology
500 University Avenue
Toronto, ON M5G 1V7
Please send your questions and comments to the above address, or email to umay@utoronto.ca

The third important item is that we have two new general
members on the Executive Council.  Please welcome Jolene Casella and Carmen Robitaille-Brown, both from West Park Hospital.
 

Anne Abbott
President
anne@warenda.com

 

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New Brochure

 

Soon we will have a new brochure about our organization, Speaking Differently.  If you would like some of these brochures to help tell others about our organization, or know of some people that you would like to give a brochure to, send your request to b.okeefe@utoronto.ca

 

 

Life and Death Issues                 by Audrey King

 

A good friend died recently.  He was a wonderful person, a man whose garbled “dialectically different” speech (as he called it) I never understood.   His preference for sophisticated language and obscure words rather than everyday common lingo certainly added to the problem.

 

Lew was a fighter, a fierce advocate.  Through his writings and letters he challenged the many injustices faced by persons with disabilities, particularly those who couldn’t advocate for themselves.   Lew felt passionately about the right to life and was appalled by the Tracy Latimer case. “Tracy wasn’t asked,” he used to say. “She didn’t get a choice.”

 

Lew was a strong advocate for others but not for himself, it seems. Latterly, he suffered chronic pain in his neck, swollen feet and difficulty breathing. He would fall asleep during the day, with headaches and loss of energy – all symptoms of respiratory failure.

 

Lew went to his family doctor regularly, but anti-depressants and pain pills did not alleviate his symptoms.  He wondered if a sleep study might identify and help resolve his problems, but, like many others with language disadvantages, he was never referred to a sleep lab, to a pain clinic or to specialists. Was his medical management appropriate, satisfactory, and sufficient?  Was it the same as it would have been for an able bodied person complaining of similar symptoms?

 

Lew, who was 60 years of age, had no family to advocate on his behalf. In the North American culture, independence and self-reliance are highly valued traits, traits which Lew certainly had. 

 

He would not use or even consider an augmentative communication device.  A strong proponent of the Independent Living Movement, he insisted that his unintelligible speech wasn’t HIS deficiency but rather that of society around him which was unable and unwilling to understand him. 

 

Did Lew’s physician really comprehend what he was trying to communicate?  Did he have the time to listen to Lew? Was Lew clear about his concerns and wishes, or did he just assume that “the doctor knew best”?   If Lew had accepted it, would a traditionally communicating advocate speaking on his behalf or an assistive communication device have made a difference?

 

 Often an independent adult with a disability harbour fear and avoidance of accessing health care services as a result of past experiences.  In recent research interviews, significantly disabled persons revealed a strong fear of loss of control, particularly in hospital situations where a person’s pre-existing disability needs are not usually well understood. This was the case during Lew’s brief hospitalization.

 

The fact is very few persons with severe disabilities receive annual physical examinations. Inaccessible offices and equipment, lack of assistance with dressing, extra time taken for procedures, staff discomfort, transportation difficulties, even the stamina and energy needed to get to the appointment, make access to routine health care a challenge.  Impaired communication adds to the dilemma.

 

Health care is in crisis.   All levels of service, from daily personal support in the home to complex medical/surgical care in a hospital, are threatened as governments struggle to establish more cost-effective services.  Privately funded health care is advocated by some who have money or influence, but those with limited physical and financial resources, including those who cannot easily communicate will fall even further behind in achieving appropriate and equal access to health care services if this happens.  

 

What are YOUR views on this?  What have YOUR health care experiences been? What are your solutions to 'taking control' in managing your own health care?

We welcome your opinions.

 

Audrey King writes and speaks widely on issues of importance to persons with disabilities. She lives in Toronto. Contact her at kingaj@istar.ca This article was initially published in the ISAAC Bulletin (August 2002).

 

 

 

 

 

 

VISIT THE SD WEBSITE

 http://home.istar.ca/~marshall/Speaking_Differently

 

Blissymbolics in Muskoka

                    By Nancy Christie

 

This summer, with the support of the Trillium Foundation and the Ontario Federation of Cerebral Palsy, the Blisssymbolics Learning Centre was established in Muskoka.

 

Each of twelve campers/ students who use - or used to use - Bliss spent a week in an individualized instruction program in cottage country. Located in a local plaza, the centre gave students an opportunity to experience summer life in the country, and gave people in the community an opportunity to learn about the capabilities of AAC users.

 

Students were active in the community, attending plays, music concerts, went on boat trips, and buying and using fishing equipment.  We are waiting to hear who caught the biggest fish!