by Cassandra Stafford, MS, CCC-SLP/L, ATP (Speech-Language Pathologist and Assistive Technology Professional), NWACS Board Member
Barney the Dinosaur is on TV again. I hate Barney – and his theme tune. … But no one knows because I can’t tell them. They think I’m an empty shell, which is why I’ve been sitting here listening to Barney or The Lion King day in, day out for the past nine years, and just when I thought it couldn’t get any worse, Teletubbies came along. ~ Martin Pistorius (Prologue, Ghost Boy: The Miraculous Escape of a Misdiagnosed Boy Trapped Inside His Own Body)
There are many reasons we communicate. Certainly, getting our immediate wants and needs met is a powerful motivation to communicate. But imagine having a goal you desperately want to achieve and not being able to ask for the help you need to reach it. Or being interested in space instead of princesses, but having princesses forced on you because you can’t let anyone know of your keen interest in space. Or that a particular person makes you feel uncomfortable – and continually being left alone with that person because you have no way to express how you feel. As a speech-language pathologist, my chief goal for all of my clients (no matter what their underlying reason for coming to me) is that every one of them learns self-advocacy skills.
According to Wrightslaw, self-advocacy is:
“… learning how to speak up for yourself, making your own decisions about your own life, learning how to get information so that you can understand things that are of interest to you, finding out who will support you in your journey, knowing your rights and responsibilities, problem solving, listening and learning, reaching out to others when you need help and friendship, and learning about self-determination.”
The Communication Bill of Rights (NJC, revised 2015) states:
“All people with a disability of any extent or severity have a basic right to affect, through communication, the conditions of their existence. “
The Communication Bill of Rights goes on to list 15 specific fundamental communication rights of all individuals (including those with severe disabilities). These include (among others): the right to express personal preferences, opinions, and feelings; the right to ask for and give information; the right to refuse or reject; the right to make choices from meaningful alternatives.
Self-advocacy is all about communicating. Telling and being heard. Expressing your thoughts, opinions, fears, difficulties, issues, experiences and needs in a way that others can understand your intended message. Being able to effectively work with others toward a solution.
Sometimes it is about preferences:
Adam is a teenager with intellectual disability and complex communication needs (CCN), and is quite small for his age. He loves music: classic rock, bluegrass, blues, rock and roll. He is very annoyed by kiddie songs/music. A few of his therapists haven’t gotten the memo. Adam needs a way to advocate for his choice in music.
Sometimes it is about the environment:
Elan has cortical visual impairment (CVI), intellectual disability, and CCN. Sometimes the light in a room bothers her, or makes it more difficult for her to functionally use vision, and she prefers the lights off. Elan needs a way to advocate for her need to have the lights adjusted.
Sometimes it is about timing:
Rodney is integrated in a regular education classroom. He has early release on Fridays to go to private therapy. His class has been having special activities and parties on Friday afternoons, which he always misses because he has to leave early. While he loves coming to therapy, he is very disappointed about missing out and is starting to feel resentful. Rodney needs a way to advocate for his feelings (and to express why) and to request a change in his therapy schedule.
Sometimes it is about something more serious and urgent:
Did you know that individuals with disabilities are 2.5 times more likely to be victims of a violent crime than their non-disabled peers? [Crime Against Persons with Disabilities, 2009-2014 Statistics] And individuals with intellectual disabilities are 7 times more likely to be sexually assaulted than non-disabled people? [Data run for NPR by the Justice Department from unpublished federal crime data.]
In her blog post, “We Need to Talk About These #MeToos”, Heather Kirn Lanier of Star In Her Eye blog poses two weighty questions:
Are we teaching our kids with intellectual disabilities to be more compliant than typical kids?
Or are we actively teaching them to stand up for themselves, to assert their wills, however inconvenient for those who serve as caregivers?
Providing the means for every individual with CCN to advocate for themselves is paramount. Which is why I included in my prior post, Writing AAC Goals, Got Precepts?, self-advocacy as one of the six core competencies within which AAC-learners must develop knowledge and skills. In order for them to self-report and self-advocate, they need language. They need the words to describe their emotions. The words to report where exactly they were hurt, and how. The words to refuse and reject. The words to express their preferences. The words to be able to say whatever they want, whenever they want, to whomever they want. We need to teach them language AND provide them access and opportunity to use them.
How we teach this may vary greatly from case to case. Erin Sheldon provides some great examples of how this looks for her daughter in comments on Heather Kirn Lanier’s blog post. How do you work on self-advocacy skills?
Wrightslaw Website: http://www.wrightslaw.com/
National Joint Committee for the Communication Needs of Persons with Severe Disabilities (NJC) Communication Bill of Rights
The Sexual Assault Epidemic No One Talks About, NPR All Things Considered
Star In Her Eye blog
Talking With Tech AAC podcast: Rebecca Moles: How AAC Can Help Prevent Abuse and Neglect
Chris Bugaj interviews Dr. Rebecca Moles, a pediatrician who specializes in child abuse, about identifying abuse and neglect, particularly when working people with CCN. Areas covered include why teaching language is so important to stopping abuse of people with CCN, signs that abuse may be occurring, and what happens (and doesn’t happen) when a report is made to Child Protective Services.
Sexual Health Education for Young People with Disabilities by Mary Beth Szydlowski, MPH, CHES (on eparent.com)
“…providing sexual health education provides information and opportunities to assist any youth—regardless of their ability—to develop life skills. Sexual health education provides the opportunity to practice skills and communicate to be more successful in navigating and responding to social and sexual situations appropriately.”
The Power of Core Vocabulary: Life Saving! (YouTube Gail Van Tatenhove)
Gail shares a video of John, an adult with CCN, reporting about an incident with a staff person via his AAC device.
The Centre for Augmentative and Alternative Communication at the University of Pretoria together with Dr Diane Bryan from Temple University in United States developed communication boards for individuals with CCN who may have been a victim of abuse to report it.
Books written by individuals with CCN that more fully explore all of the ways in which their lack of functional communication impacted their lives – and how gaining a system of communication empowered them [I have linked each to summaries I wrote on my blog]:
Petey by Ben Mikaelsen
I Raise My Eyes to Say Yes: A Memoir by Ruth Sienkiewicz-Mercer and Steven B. Kaplan
Care Provider Bulletin: Reporting Abuse and Neglect from the Washington State Developmental Disabilities Administration (DDA). Speech-language pathologists are mandatory reporters in WA State. And any care givers who are paid to care for individuals with intellectual or developmental disabilities are also considered mandatory reporters. This Care Provider Bulletin from DDA provides information about who is required to report and how, red flags to watch for, and prevention.