In memory of our dear friend and colleague, Aaron Shelbourne

 

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By Barbara Collier, Executive Director, Augmentative Communication Community Partnerships Canada (ACCPC)

This was originally published in the December 2010 edition of Figuratively Speaking, the national newsletter of the Canadian Chapter of the International Society for Augmentative and Alternative Communication.

Those of us who were fortunate enough to know Aaron, miss him in so many ways.  We miss his great, larger than life, “can’t-stop-once-he-starts” laugh; the twinkle in his eye when he thought of the slightest hint of naughtiness in what was said or meant; the way his great, big voice announced him well before he came into view! 

Aaron’s presence filled a room - whether he was with his friends, joking and scheming against the establishment or seriously advocating for his rights or the rights for others who use AAC.  No matter what the agenda was, Aaron was always true to himself – a determined, smart, caring guy who meant so much to so many people.

In the last few years of his life, Aaron worked with ACCPC on a number of significant projects.  He was an advisor on the “Speak Up project” that explored the abuse experiences of people who use AAC, and he was a presenter at many of our trainings for police, counselors, sexual health educators and clinicians.  Aaron was a very impressive presenter.  I often heard audience members remark that he had “opened their eyes” and changed their perspectives. In 2000, he participated in the DVD and book “Pointing it Out”: a safety resource by and for people who use AAC.  With support from ISAAC Canada, Aaron presented on this project at ISAAC, 2008 in Montreal.

He participated on another DVD – in “Communicating Matters”, a training program for attendants. This resource was very personal for Aaron.  He felt passionately that attendants should be trained to communicate with people who use AAC because communication is the foundation of all personal services. He also advocated that attendants should be accountable not only to their supervisors but to the consumers they work with.   

Since 2006, Aaron worked with ACCPC to increase accessibility for people who use AAC to services within the justice sector and his online video clips (http://www.accpc.ca) are currently used across Canada to educate lawyers, court accessibility coordinators, victim witness services about the accessibility needs of people who use AAC.  In 2007, Aaron participated in an ACCPC federal project on communication assistants. Aaron strongly believed that people who use AAC have the same right to funded human assistance as people who are deaf have the right to sign language interpreting services.  Although he managed to maintain a roster of communication assistants to support him around his medical needs, he continued to advocate that others have access to these services.  

Aaron’s contribution to the AAC field is not limited to his project work with ACCPC. We think it is important that we share some of his life experiences with you as Aaron’s life and many of his struggles reflect issues that are highly pertinent to all of us in the AAC community.

As a child of the times, Aaron lived in an institution and went from there to a small group home.  From there he engaged in a long series of negotiations to get his own apartment in downtown Toronto with agency based attendant services. Over the years he struggled to get the supports he needed to train his attendants to communicate with him. He often stated that there wasn’t always the will, the time or ability to provide him with this basic right to direct his services. For many years he applied for but was unsuccessful in getting direct funding so that he could hire and manage his own attendant services. 

As an adult, Aaron attended an adult literacy program at Seneca College that was taught by Sherri Parkins.  Sherri remembers his amazing ability to do long division questions in his head. He was also a wonderful chess player using a custom board that allowed him to indicate his next move.

A couple of years ago, Aaron decided he wanted to address his alcoholism.  With the help of his friends, he advocated for the supports he needed to get into a residential substance abuse program.  These supports included his request for a communication assistant to communicate with staff and to participate in individual and group counseling sessions.  Despite the existence of Eldridge v. British Columbia (1997), a Supreme Court judgment that obligates organizations to provide accommodations for communication in essential services, it took Aaron over 18 months to get the supports he needed to access the program.  During that time, Aaron bravely sat through meetings where organizations tossed “the responsibility ball” amongst themselves and heard comments such as “With all this expense, how can we be assured that he will never drink again?”

Despite all of this, Aaron not only persevered with getting the supports he needed, he succeeded in managing his alcoholism.

In 2008, Aaron faced the same struggles for communication assistance when he was diagnosed with cancer.  He and his support circle advocated and finally got the supports he needed to communicate with his medical team during his treatments and long battle with cancer.  Aaron passed away in March 2010 with his sister and his beloved communication assistant, Lamia Gibson, by his side.

Aaron should never have had to work so hard to get the communication support he required to live the life he wanted to have.  As members of the AAC community we must find more effective ways to make society truly and meaningfully accessible for people who use AAC.

Thank you, Aaron for sharing your life lessons with us. It is our job to listen and move forward.

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