Loud 'N Clear: The SD Newsletter

Vol. 1, #1     

June 2002                   

 

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

PRESIDENT’S MESSAGE

Welcome to Speaking Differently! As President, I am pleased and proud to present the very first edition of our newsletter.

While this newsletter is new and we have a new name, our group has been around for quite some time. When we first started back in 1998, we were called the Greater Toronto Area Augmentative Alternative Communication Advocacy Group. The brainchild of Dr Bern O’Keefe of University of Toronto (U of T), we started out as a small group with a big name.

Meeting once a month, with only a scant six members, we began our infancy in the basement of the Tanz Neuroscience building at U of T.  As we grew, we moved our meetings to Metro Hall (a city owned facility in downtown Toronto).

 

To ensure that we have a say about the direction of our organization, AAC users make up the Executive. Recently, however, it was agreed that we should have “shadows” who would co-run the organization. The “shadows” are comprised of a speech-language pathologist, a family member, and two speech-language pathology students.

 

When we changed our name to “Speaking Differently, ” we also broadened our scope.  We now want to involve people on a nationwide scale. This is a tremendous undertaking, and we are all excited about the prospect of enlightening people on current happenings related to communication disabilities. If we can, through our efforts, impact and improve a person’s life by providing information and support, our aim will have been met.

 

Not only do we want AAC users to be members; we would like to also recruit family members, occupational therapists, speech-language pathologists, and anyone else with a serious interest to be involved.

An AAC user myself, I go to the AAC section of the West Park
Hospital in Toronto to have my VOCAs (Voice Output Communication Aids) assessed and serviced. On one of the walls hangs a large sign that reads: “Not being able to talk is not the same as having nothing to say.”

Here at Speaking Differently, we believe in the very essence of this idea. Whether you have Cerebral Palsy, ALS, have had a stroke or an acquired brain injury, we believe that you have the right to be heard. We believe that your opinions and input matter. 

 

Most importantly, let us know what you want SD to do for you and for persons who use AAC. I can't wait to hear from you! Contact me, and join us at Speaking Differently, and with others, we can make a difference for people who rely on alternative communication.

Anne Abbott
President
anne@warenda.com

 

MORE ABOUT US

As Anne points out above, our group has been meeting for several years. However, Speaking Differently (SD) itself began in October 2001 with the first meeting of the Executive Council held on November 20. Since then the EC has met six times and has accomplished a great deal including:

 

·       an organizational structure

·       distribution of press releases and brochures

·       a membership drive (financed by a grant from ARCH)

·       establishment of membership and publications committees

·       the launching of a web site

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

·       the beginnings of a
system to keep an eye on legislation that effects people who use AAC

·       the identification of issues that  SD is confronting. Important issues include education of professionals who deal with persons who use AAC, transportation, housing, attendant care, friendship, jobs and leisure.

 

If you are interested in these issues, join with us. (See How to Join SD)

 

Need more information?

Elsewhere in this issue you will find an article by Webmaster Paul Marshall about the SD web site. In the months to come, you will find more and more information on SD and its work on the site.

Need brochures about SD?  Send your request to b.okeefe@utoronto.ca

 

 

 

LISTEN

Don’t just see me, hear me.  Don’t just read my words, listen to them.  Listen to me, then look at me.  If you look first, you’ll probably not see.  Listening is the path to understanding me. Only seeing me, is blindness.

 

I’m not an empty dysfunctional carcass you may see before your eyes, wallowing in a state of despair.  I am filled with joy and passion.   I have a spirit that moves me, frees me, and lets me defy all those who say I cannot live life to its fullest.

 

I have a lot of love inside, with a passionate heart.  I have the humour and laughter of a circus clown.  I have creativity and intellect, and I am a sexual being.

 

In essence, my character identity is stifled by the lack of free flowing dialogue and interaction with you.  Yet, my inner voice often cries out “LISTEN TO WHO I AM, AND SEE ME AS I TRULY AM!!!”

 

We, who use alternative means of communication, need to be heard.  We need to be LISTENED to.  Don’t just read our words; don’t just hear our mechanical voices.  Listen to us as you would listen to others, speaking to you with their own voices.

 

Tony Diamanti

SD Executive Member

tdiamonti@hotmail.com

 

ICE CONFERENCE

April 12, 13 and 14, 2002 were memorable days for the AAC community in Canada. They were the dates of the first ICE conference.  ICE stands for Independence, Community and Empowerment. ICE is Canada’s answer to the successful Pittsburgh Employment Conference (PEC) for AAC users.

 

40 AAC users and their attendants gathered at Geneva Park (near Orillia, Ontario) for the first real conference of people who use AAC in Canada. In addition to extraordinary keynote speakers, discussion groups, and many opportunities for informal dialogue, the town hall meeting was the highlight of the conference.   Comments made during the town hall meeting included:

·       Living independently is a great idea, but is it feasible?

·       Independence makes you feel like a person

·       I have a goal to live in my own apartment, to hire my own attendants and to be in control of my life

·       Make plans for independent living before your parents get older and have difficulty caring for you

·       I love special really truly friends!

 

Over the course of the weekend, there was laughter and tears. Old friendships were renewed and new ones formed. People shared successes and frustrations. It was unlike anything I have ever experienced. It reconfirmed for me the importance of the work that we do together.

 

Many organizations and groups helped to make this a reality. They include the March of Dimes, Ontario Trillium Foundation, Sunrise Medical Canada, DynaVox Systems, Ontario Federation for Cerebral Palsy, Aroga Technologies, SHOUT (Support Helps Others Use Technology), Ontario Barbershoppers - Harmonize For Speech Fund

 

The dedicated and hard working committee that included:  

COMMITTEE MEMBERS:

Nora Rothschild - Chairperson, Jackie Baisley, Lynne Balfour, Andrea Dyrkacz, Carolyn Henry, Penny Parnes, Gerry Schram, Aaron Shelbourne, Alan Sunisloe, Asif Syed, Victor Valentic

OMOD STAFF:

Angela Van Alstine, Catherine Gordon, Donna MacKay, Nancy Hopkins, Jerry Lucas, Cathy Smart

 

VISIT THE SD WEBSITE

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

 

Speaking Differently’s website has developed over the past few months to give our new organization a presence on the Internet. Right now, the site contains:

·       the organization structure

·       interim executive council

·       how to join

·       a membership application form.

 

Over the summer, we are planning to add

·       a link section containing  many popular web addresses for  information about AAC - Augmentative and Alternative Communication

·       a bulletin board for conversations about  issues related to living as an AAC individual. We look forward to your input on this bulletin board!

·       our minutes- so you can keep updated on our latest activities.  We invite your questions or suggestions for the Executive Council.

 

We hope that you will visit the site often and find interesting information that you can use. We hope you will get involved in SD through the site and share your stories, issues and comments as we try to make the gap between the AAC community and the rest of the speaking community narrower. We want to hear and interact with you in the near future.

 

Paul Marshall

Webmaster for Speaking Differently

paulmarshall@cogeco.ca