Self-Advocacy

Self-advocacy means speaking up for yourself, making your own choices about your life, learning how to get information so that you can understand things that are interesting to you, finding out who will support you in your journey, and reaching out to others when you need help and friendship. It also involves knowing your rights and responsibilities, solving problems, listening and learning, developing self-determination, the freedom to live as you choose and make choices on your own. Some examples are:

deciding to paint your bedroom black
choosing to have a medical procedure
asking your boss to be treated equally in your workplace

In any situation, self-advocacy is the basic idea of asserting yourself for yourself. You know yourself better than anyone else knows you.

The first step in self-advocacy is learning everything you can about your needs, disability, strengths, and challenges. As you learn more about yourself, it is important to find out exactly what your rights are and where you can go for help, support, and information on standing up for those rights.

When it comes to your life, you are the person with the biggest interest, and you’re the person who should have the most control over it. People 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 for yourself, you need to understand everything about your own 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 early in life helps you make choices that will impact the rest of your life. All youth transitioning from teenage years into adulthood need to be able to make individual choices and should be encouraged to have as much independence as possible so they can plan for their future.

Anyone can be a successful self-advocate, regardless of major challenges or complex needs. Having role models and peers to guide you along the way will give useful insight and lessons because they have experienced similar things. Watching other people successfully advocate for themselves helps everyone realize that people with all abilities can have success through self-advocacy.

Speaking up can be a hard thing to do. It’s very scary at times, especially when you’re just starting out, but the more you do it, the easier it gets. You are the number one expert on your own life, and the more you speak out, the more confidence you’ll have to speak up.

When speaking up for yourself, remember that 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 vital 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 keep eye contact, smile, and even keep your arms uncrossed so you appear more open, confident, and friendly.

Self-advocacy is a lifelong skill that all people need to keep building. Managing your services and supports depends on it. Here, we offer a few tips for learning 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 talking to someone, don’t forget to listen and ask questions! It’s important to understand the other person’s point of view.
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. Not talking about it 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 taken care of.

Don't wait for someone to know what you need or expect others to advocate for you.
Come up with ideas about how you can get your needs met while respecting other’s time and abilities.
Don’t give up because the process is long or the situation is hard.
Don’t accept “NO” from someone who doesn’t have the authority to say “YES”. You have the right to speak with a manager or director if you feel you need to

Express negative thoughts and feelings in a healthy and positive way.

Allow yourself to be upset or angry, but always be respectful.
Do say what's on your mind, but in a way that doesn’t hurt or blame someone else.
Control your emotions as much as possible by thinking over your ideas before speaking.
Stand up for yourself with people who challenge you and/or your rights.
Remember that firm communication is NOT forceful communication.

Receive criticism and compliments in a positive way.

Accept compliments kindly.
Know that it is okay to make 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 things.

Always be ready.

Get ready for meetings ahead of time.
Be informed about on the topic you’ll be discussing. Do research, and listen, so you can find out others’ thoughts on the issue.
Take notes and keep records of all meetings, conversations and correspondence.
Work together: having partners goes a long way.
Look at problems and provide suggested solutions.
Keep an open mind. Come up with 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 can 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
This website offers groups, stories, guidance, and a series of videos about learning self-advocacy skills

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.

Center for Parent Information and Resources (DOE)
Parent centers in every state provide training to parents of children with disabilities and provide information about special education, transition to adulthood, health care, support groups, local conferences and other federal, state, and local services. See the "Find Your Parent Center Link" to find the parent center in your state; 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 or local independent living centers.

The Arc of the United States
Provides fact sheets, webinars, and a lot of other information on public policy and disability rights for families. The Arc works to protect people with intellectual and developmental disabilities and their families on the federal level through public policy efforts. Many local chapters are available.

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

National Disability Rights Network
Provides legally based advocacy services to people with disabilities in the United States and is a good national resource for looking into the legal rights of people with disabilities.

Youth Leadership Toolkit
Good video site for youth and young adults to learn about employment and related topics in an easy access online format. Developed by Independent Living Research Utilization (ILRU) in collaboration with the Center for Persons with Disabilities and the Becoming Leaders for Tomorrow Project.

Authors & Reviewers

Initial publication: December 2005; last update/revision: January 2020

Current Authors and Reviewers:

Contributing Authors:	Robin Pratt
	Barbara Ward, RN BS
	Joyce Dolcourt
	Kristine Ferguson
	Teresa Such-Neibar, DO
	Lynn Foxx Pease
	Helen Post
	Roz Welch
Reviewer:	Tina Persels

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

Authoring history

2014: update: Gina Pola-Money^CA; Shena McAuliffe, MFA^R

2008: first version: Alfred N. Romeo, RN, PhD^R

^AAuthor; ^CAContributing Author; ^SASenior Author; ^RReviewer