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Self-Advocacy

Self-advocacy means speaking up for yourself, making your own decisions about your 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, solving problems, listening and learning, reaching out to others when you need help and friendship, and developing self-determination, the freedom to live as you choose and make decisions on your own. You know yourself better than anyone else knows you.
Self-advocacy applies at school, in health care decisions, or when living independently in the community. Whether you’re in formal discussions with a policy-maker about funding a day program, choosing to have a medical procedure, or deciding to have your bedroom painted black, self-advocacy is the very basic idea of asserting yourself for yourself.
Effective and respectful communication is important for successful advocacy. Regardless of your communication method--spoken words, sign language, assistive technology, etc.--the key is to make yourself heard however you are able. However, it’s important to be aware of your body language when you are advocating for yourself: 70% of communication is nonverbal. Eye rolling, frowning, or crossing your arms will likely lead to misunderstanding. Remember, when you can, to maintain eye contact, smile, and even keep your arms uncrossed so you appear more open, confident and friendly.
The first step in self-advocacy is learning everything possible about your needs, disability, strengths and challenges. As you expand your knowledge about yourself, it is important to learn exactly what your rights are and where you can go for assistance, support, and information on asserting those rights.
When it comes to your life, you are the person with the most at stake, and thus, you’re the person who should have the most control over it. Individuals with disabilities are often the least able to explain their needs because parents and others that love and care for them have always done the explaining, but to advocate effectively for yourself you need to understand everything about your disability and needs. This is the reason to start speaking up for yourself when you are young, so that eventually it will come as naturally as possible. Learning and practicing self-advocacy skills early in life helps you make decisions that will ultimately impact the rest of your life. All youth transitioning from adolescence into adulthood need the empowerment to make individual decisions and should be pressed to have as much independence as possible so they can plan for their hopes and dreams.
Anyone can be a successful self-advocate, regardless of significant challenges or complex needs. Having role models and peers to guide you along the way will provide valuable insight and lessons from those who have experienced similar things. There is a great Chinese proverb that says it all: “To know the road ahead, ask those coming back.” Watching other people successfully advocate for themselves helps everyone realize that people with all abilities can achieve success through self-advocacy.
Speaking up can be tough. It’s very scary at times, particularly when you’re just starting out, or if you’re surrounded by a bunch of experts who think they know best. As with everything, the more you do it, the easier it gets. You are the number one expert in your own life, and the more you speak out, the more confidence you’ll have when you share your expertise.
Self-advocacy is a lifelong skill that all individuals need to continue to build. Navigating the services and system of care depends on it. Here, we offer a few tips for developing successful self-advocacy skills:

Value yourself and your rights
  • Understand that your rights, thoughts, feelings, needs, and desires are just as important as everyone else's. But remember they are not more important than anyone else's, either.
  • When in a discussion, don’t forget to listen and ask questions! It’s important to understand the other person’s point of view. Sometimes finding a compromise may be the best outcome as long as it doesn’t impact your safety, health, and overall well-being.
  • Believe that you deserve to be treated with respect and dignity at all times, and so does everyone else.
  • Don’t be afraid to speak up and describe the problems you’re facing. Beating around the bush just makes the issue unclear.
  • Don’t be afraid to disagree with others, even if it means upsetting the peace.
  • Hold everyone, including yourself, accountable for following through on decisions and actions.
Identify your needs and wants, and ask for them to be satisfied.
  • Don't wait for someone to recognize what you need or expect others to advocate for you.
  • Create ideas about how you can get your needs met without sacrificing others' needs in the process.
  • Don’t give up because of red tape, the status quo, or defeat.
  • Don’t accept “NO” from someone who doesn’t have the authority to say “YES.”
Express negative thoughts and feelings in a healthy and positive manner.
  • Allow yourself to be upset or angry, but always be respectful.
  • Do say what's on your mind, but do it in a way that doesn’t hurt someone else or place blame.
  • Control your emotions as much as possible by rehearsing your ideas before formally speaking.
  • Stand up for yourself and confront people who challenge you and/or your rights.
  • Remember that assertive communication is NOT aggressive communication.
Receive criticism and compliments positively.
  • Accept compliments graciously.
  • Allow for mistakes and ask for help, these are learning opportunities.
  • Accept feedback positively. Be prepared to say you don't agree, but do not get defensive or angry.
  • Sometimes you will have to agree to disagree on certain topics.
Always be ready.
  • Prepare for meetings.
  • Be informed about as much as possible on the topic you’ll be discussing. Do research, and listen, so you can gain other perspectives on the issue.
  • Keep records and document all meetings, conversations and correspondence.
  • Collaborate: having partners goes a long way.
  • Analyze problems and provide suggested solutions.
  • Keep an open mind. Brainstorm creative solutions to problems and challenges.
Advocacy helps you get services you need or want, and it can open new doors in your community. Advocacy and strong communication skills knock down barriers and prepare you for independence. Most of us can benefit from working hard to build our advocacy skills, even if we already have a great deal of self-determination and confidence. There are many organizations within the community dedicated to teaching self-advocacy skills.

Resources

Information & Support

For Parents and Patients

Self-advocacy Online
A series of videos and information about learning self-advocacy skills.

Kids as Self-Advocates (KASA)
KASA is a national, grassroots network of youth with special needs and friends, speaking on behalf of ourselves. We are leaders in our communities, and we help spread helpful, positive information among our peers to increase knowledge around various issues. Those issues include: living with special health care needs, health care transition issues, education, employment, and many more. We also help health care professionals, policymakers and other adults in our communities understand what it's like to live with special health care needs and we participate in discussions about how to help each other succeed.

Advocating Change Together (ACT)
A grassroots disability rights organization run by and for people with developmental and other disabilities. ACT's mission is to help people across disabilities to see themselves as part of a larger disability rights movement and make connections to other civil and human rights struggles.

Center for Self-Determination
Highly interactive working collaborative of individuals and organizations committed to the principles of self-determination. The purpose of the collaborative is to change the nature of the support and service system for individuals with disabilities, using the principles of self-determination to help all persons create the lives they want, connected to and with their communities.

Self-Advocates Becoming Empowered (SABE)
SABE is a self-advocacy organization working hard for the full inclusion of people with developmental disabilities in their communities throughout the 50 states.

Center for Parent Information and Resources (DOE)
A large resource library related to children with disabilities. Parent Centers in every state provide training to parents of children with disabilities and provide information about local conferences, support groups, and finding schools and other local services; Department of Education, Office of Special Education.

National Council on Independent Living (NCIL)
Provides information and advocacy for independent living with links to locate state councils and local centers.

State Government Links
Hosted by the federal government, this website provides links to official websites in the U.S. states and territories.

The Arc of the United States
The Arc works to include all children and adults with cognitive, intellectual, and developmental disabilities in every community. Many local chapters are available.

TASH
TASH is a national organization advocating for disability rights, combining research with advocacy.

National Disability Rights Network
NDRN is the nonprofit membership organization for the federally mandated Protection and Advocacy (P&A) Systems and Client Assistance Programs (CAP). Collectively, the P&A/CAP network is the largest provider of legally based advocacy services to people with disabilities in the United States.

Youth Leadership Toolkit
Guide book and DVD videos for youth/young adults, parents, medical providers, and other professionals with tips from young adults to assist in transitioning to adulthood. Includes transportation, finding adult health care, healthy relationships, employment/volunteering, self-advocacy and independent living. Developed by Independent Living Research Utilization (ILRU) in collaboration with the Center for Persons with Disabilities and the Becoming Leaders for Tomorrow Project.

Transition Handbook: From 'No' Where to 'Know' Where (PDF Document 1.1 MB)
This handbook, from the Utah Parent Center, is designed for parents of children with disabilities to help them be active participants in developing transition goals and activities as their children transition to adulthood and includes information about steps to transition, graduation, laws, roles of players, transition planning, employment, training, independent living, timelines, advocacy, SSI, health care, guardianship, estate planning, and a directory of related Utah organizations.

Authors

Contributing Author: Gina Pola-Money - 2/2014
Reviewing Authors: Shena McAuliffe, MFA - 2/2014
Alfred Romeo, RN, Ph.D. - 12/2008
Content Last Updated: 3/2014

Funding/Support

Thank you to the Utah Medical Home Young Adult Advisory Committee for reviewing this section.