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Self-advocacy refers to an individual’s ability to effectively communicate, convey, negotiate or assert his or her own interests, desires, needs, and rights. It involves making informed decisions and taking responsibility for those decisions. (VanReusen et al., 1994)
Self-advocacy is understanding your strengths and needs, identifying your personal goals, knowing your legal rights and responsibilities, and communicating these to others.
Self-Advocacy is speaking up for oneself. Until recently it was a concept used more for adults with disabilities, but increasingly it is recognized as a skill that teens with disabilities need to develop.
Background
The term “self-advocacy” can be traced back in the late 1960’s when young adults with disabilities began speaking out about taking an active role in planning their lives and the programs that supported them. You can learn more about the history of the self-advocacy movement on the website of The Minnesota Governor's Council on Developmental Disabilities.
Important outcomes of the self-advocacy movement include the recognition that people with disabilities are people first as well as the push for People First Language. Click here for more information about People First Language. You can also listen to a brief report on NPR discussing the importance of language from the perspective of self-advocates: http://www.npr.org/templates/story/story.php?storyId=6943699
Following the first self-advocates conference held in 1984, self-advocacy groups sprang up all over the United Sates, Canada, England, Australia, New Zealand, and Sweden and continue to grow today. In many states, local groups have come together and formed statewide organizations that have boards of directors (most or all of whom have disabilities) and employees (who may or may not have disabilities) that carry out the wishes of the self-advocates who are the members.
In Texas, the Texas Advocates are one such group: http://www.txadvocates.org/
Another resource is the Human Services Leadership Institute: http://www.hsri.org/topics/self-advocacy
What Parents (and Teens) Need to Know
When our kids are young, we, their parents, are their greatest advocates. But life happens. Our kids grow up, and we get tired! At some point, whether we like it or not, someone else will speak for our child. Who should that be?
Think about it. Who can best speak for you? It’s you! Why should it be any different for our children? Don’t let your child’s disability stand in the way; even those with very significant needs can communicate specific preferences or desires. The adult world will require our children to make decisions; if they don’t, someone else will. They must become their own best advocate.
What does self-advocacy look like? Here are some examples, just to get you thinking:
- Emily is a 35 year old woman with significant cognitive disabilities and some physical disabilities. She does not use words to speak. She receives attendant care services during the day to assist her with bathing, dressing, and going on outings. Emily assists her family in choosing who they will hire as an attendant. She is included in the interview process, and her family watches her non-verbal communication closely to determine her preferences of the applicants. Emily is practicing self-advocacy.
- David is a 16 year old young man with significant cognitive disabilities. He receives special education services through his local school district. David participates in all of his ARD meetings. He assists in determining his course selection, and tells the committee what kinds of supports he feels he needs or can benefit from. He is included in the discussion of IEP goals and is held accountable for his role in trying to meet those goals.
- Matt is a 14 year old with cerebral palsy. He uses a wheelchair. His English teacher unwittingly uses demeaning language that Matt finds offensive, like “handicapped” or “non-verbal.” Matt writes his teacher a polite letter explaining his feelings and includes a “people first language” brochure.
- Kendra is a 12 year old with physical disabilities. She receives physical and occupational therapy but dislikes her therapist intensely. After discussing her feelings with her parents, she schedules a meeting with her principal and her parents to discuss what can be done to change the situation.
- Candace is a 45 year old woman with significant physical disabilities; she uses a manual wheelchair and a letter board to communicate. Candace believes she could use a power wheelchair and an augmentative communication device, but her therapist tells her there is “no way.” Candace asks to see another, outside therapist for a second opinion.
- Michael is a 16 year old with a cognitive disability. He has been repeatedly bullied (name-calling and ridiculing) by another student at the high school and finally tells his parents. Rather than going to the principal for him, Michael’s parents encourage Michael to make a report to the high school principal himself or to a teacher that he trusts. They teach him the steps he can take to eliminate the problem and support him to take those steps himself.
Your child will not automatically have self-advocacy skills the day he/she turns 18, unless you have deliberately provided opportunities to practice along the way.
More resources:
Thoughts About Self-Advocacy, by Michael Kennedy, with Bonnie Shoultz
http://thechp.syr.edu/chp-archives-thoughts-about-self-advocacy/
More Thoughts on Self-Advocacy: The Movement, The Group, and the Individual
by Bonnie Shoultz
http://thechp.syr.edu/more-thoughts-on-self-advocacy-the-movement-the-group-and-the-individual/
Self-Advocacy:
Know Yourself, Know What You Need, Know How to Get It
http://www.wrightslaw.com/info/sec504.selfadvo.ld.johnson.htm
Self-Advocacy: A Valuable Tool for Your Teenager
http://www.greatschools.org/special-education/health/797-self-advocacy-teenager-with-ld.gs
National Association for the Deaf:
http://www.nad.org/issues/about-law-and-advocacy-center/advocacy-tips
“The Riot” – A national E-newsletter written by and for self-advocates: http://www.theriotrocks.org/
Kids As Self-Advocates: A Project of Family Voices
National Youth Leadership Network
The National Consortium on Leadership and Disability for Youth (NCLD/Y) http://ncld-youth.info/
National Collaborative on Workforce and Disability for Youth - NCWD works to ensure that transition age youth are provided full access to high quality services in integrated settings to gain education, employment and independent living. They have a variety of Youth Tip Sheets to help with transition. Topics include: Becoming a Stronger Self-Advocate; Leading Your Transition Planning; Learning Disability History; Getting Involved in Volunteering; Serving on Decision-Making Boards; and Participating in Internships and Work-Based Experiences. Click here for a list of all Tip Sheets, found under Publications.
Self-Advocacy Online – Find self-advocacy groups, view stories from self-advocates, and learn about self-advocacy on this website, developed by the Research and Training Center on Community Living at The University of Minnesota.