About Speak Up

How does the program affect lives of people in the community?

People who use AAC will obtain information and vocabulary about healthy sexuality, abuse and ways they can protect themselves from sexual abuse. They will be able to access information in a format that they can use if they are unable to turn pages in a book or read. Community counselors, attendants service providers, medical and legal professionals will be more aware of the unique needs of people who use AAC and will therefore be in a position to better meet their needs.

Ontario-wide community agencies (e.g., law enforcement agencies, medical facilities, hospitals, rehabilitation centers, community access centers, residential services, abuse counseling services, consumer and family support groups, sexual education services, transition programs to independent living etc.) will be supported in the development of good practice guidelines in order to safeguard people who use AAC and to meet the needs of people who have been sexually abused.

How do real people benefit from the program? What are their stories?

Story 1:

M. lives at home with his parents. During his birth M. suffered from a shortage of oxygen which resulted in M. having cerebral palsy. Cerebral palsy affects how a person controls their muscles and movements. Due to his cerebral palsy, M. cannot stand or walk independently and he cannot speak. He communicates by looking at pictures on a specially made communication display which contains pictures of the words he wants to say. The person with whom he is communicating watches his eyes and places his or her hand over the general area of the display while saying "Is it in this area?" M. makes a sound to signal "Yes". His partner then points to each picture in the area until M. signals that he/she has touched the one he wants. In this way M. communicates what he wants, asks questions, tells people his news and actively participates in conversations.

M. has a number of caregivers - neighbors, attendants and family members who come into his home throughout the day to assist him with his daily routines such as dressing, eating, washing, toilet, setting up his computer for his work etc.

One Saturday morning, M. became extremely agitated when his mother mentioned that a particular neighbor would be working with him that evening. M's frustration was obvious as he cried, shuffled around in his wheelchair and shook his head adamantly in protest. M's mother asked him to explain the problem but M. did not have the pictures or words he needed to communicate his message on his display. In desperation, M. looked down at his lap - signally to his mother that his message was about his private parts. M's mother asked M if the neighbor in question had touched him inappropriately. M signaled "Yes".

M. decided that he wanted to press charges and obtained the support and the vocabulary he needed to communicate his story in detail to the police, legal professionals and finally to a judge in court. His neighbor was convicted of sexual abuse.

The amount and type of support that M required in order to bring his case forward was the inspiration for the Speak Up Project as the services and resources he required were not and continue not to be available within existing community based agencies.

Story 2:

J is in her 30's. She has a severe physical disability and cannot speak. J. cannot spell out what she wants to communicate, so she gets her message across by pointing to pictures in a specially designed communication display. She tends to give "key" elements in her messages and relies on her communication partner to "fill in the blanks." For example, J. might point to the pictures of "I" "home" "weekend" and the partner would then guess what she wants to communicate "You're going home at the weekend?" or "You went home last weekend" or "You want to go home for the weekend". J. immediately recognizes when her partner says what she means and nods her head to signal that it is the message she wants to convey.

A number of years ago, J lived in a group home along with 10 other residents - four of whom had severe communication disorders. She relied on personal attendants to assist her in her daily routines such as getting up, going to bed, personal hygiene etc.

J. had been living in the group home for 6 months when she was sexually abused by an attendant during the process of putting her to bed. She was extremely upset and humiliated.

J. reported the incident to the supervisor by pointing to the picture of the person and certain body parts in her display. At J's request, the supervisor called the police.

The police officers that interviewed J. had never met anyone who used an augmentative communication system. There was nobody present who could assist J. in communicating her message to the police. J. reported later that the police spoke to her as if she had a severe intellectual disability, that they spoke loudly thinking she might be hard of hearing, and that they could not make sense of the way she communicated. The supervisor was informed that J. would not make a credible witness and the case never went further.

J's story and many more anecdotal reports from AAC users illustrate their experiences of being treated differently from other members of the public, of not being taken seriously, and of being considered unable to appear in court and make a reliable testimony.

What is Speak Up?
Who is Speak Up for?
What will Speak Up do for people who use AAC?
What is the story - why is Speak Up needed?
How does the program affect lives of people in the community?
How will Speak Up be implemented?
Speak Up Team Members
Speak Up Advisory Committee Members