Speaking Up: What Is Self-Advocacy and What’s in It for Me?

Posted by Reeve Staff in Life After Paralysis on September 30, 2020 # Lifestyle

By guest blogger Lauren Presutti

When I started elementary school – rolling up in my pink power wheelchair – many adults were discussing what they believed would help me thrive in my education. I was blessed to have resources and dedicated professionals who would advocate for me. The only problem was that I was often left out of the conversation. For many people with disabilities – particularly for children – it can be hard to feel included in the discussions that directly impact them. Although professionals in schools, workplaces, and healthcare settings, may have good intentions, self-advocacy directly from individuals with disabilities is significantly more effective for achieving positive outcomes.woman in wheelchair at beach

I learned this through countless experiences growing up. Living with a neuromuscular disease, I had no choice but to learn how to ask for help, how to explain my needs to other people who didn’t always understand, and how to be a strong self-advocate to maximize the quality of my life. Now, as a professional advocate, I work with people and families affected by disabilities so they can reach their fullest potential. But instead of speaking for others, my mission is to teach people how to become their own self-advocates so they can successfully fight for their needs throughout their lives.

What Is Self-Advocacy?

There are many definitions in the literature, but I define self-advocacy as:

  • Confidently speaking up for yourself
  • Assertively explaining your needs to obtain something
  • Being able to make your own decisions about your life
  • Utilizing information and resources to your advantage
  • Knowing what your rights and responsibilities are
  • Using the support of other people to accomplish your goals
  • Not giving up or backing down when faced with barriers

Essentially, a strong self-advocate is someone who can understand what their needs are and can communicate their needs to accomplish their goals. The goal of self-advocacy is for YOU to decide what you want and then develop and carry out a plan to get it.

Self-Advocacy Includes Asking for Help

It is a misconception that being a strong self-advocate means that you have to do everything independently. Sometimes being a self-advocate means recognizing that we need additional help and then strategically utilizing resources to help us succeed. Often when we need accommodations, we have to navigate an incredibly complex system. If we tried to do everything ourselves all the time, it could be impossible or exceedingly frustrating to overcome those barriers, and we may not be successful. We shouldn’t have to do everything by ourselves – we shouldn’t have to go through difficult things alone. We should be able to reach out to other people, whether they are professionals, friends, family, or other people in our support system so that we can utilize multiple perspectives and different types of expertise to accomplish our goals.

Self-Advocacy Requires Speaking up

Self-advocacy might also mean disclosing personal things about our lives. If you live with a disability that is not well-known or easily understood by able-bodied people, it might feel overwhelming to have to speak up and communicate what your needs are. These feelings are valid, and I recognize that it can be difficult. But remember, your ability to thrive and to promote positive change in our community for disability awareness lies in your ability to speak up. Think about what can result from speaking up. It is not only critical for accomplishing your goals, but also for educating others about different human needs. Your needs might be different – but it doesn’t make you any less important or less deserving of equal access and opportunities.

Self-Advocacy Means Being Unapologetic

When self-advocating, you may be tempted to apologize for needing accommodations or services. Still, the bottom line is that you should not have to apologize for your disability-related needs. You should never have to apologize for needing something that can help you live your best life. In the United States, we often apologize for things that are not our fault. Have you ever accidentally bumped into someone and apologized even when it was not your fault whatsoever? This is a normalized practice and considered polite, so this “automatic reaction” of apologizing can surface in our minds when we are explaining a disability or asking for accommodations. Challenge yourself to avoid this when self-advocating and remember that your disability-related needs are not your fault. You didn’t ask for your disability. Your needs are important. Speaking up in a way that resembles assertiveness and confidence – without apologizing – more often leads to success.

Self-Advocacy May Bring Opposition

Sometimes, being a strong self-advocate means that we have to experience difficult conversations with people of authority. Anytime we are talking to someone with more power than ourselves, it can feel intimidating to speak assertively about what our needs are. Being a strong self-advocate means that we have to tolerate this discomfort so we can push forward and remain dedicated to our goals. When you face this type of opposition, ask yourself how you can take care of yourself at that moment. How can I deal with this discomfort, how can I cope with these negative feelings, how can I remain confident about what I need to accomplish without allowing this other person and this opposition to make me feel powerless or helpless? This requires practice – you may consider strengthening your coping skills, taking breaks, considering alternatives, utilizing social support, exploring other approaches, or working with a counselor or coach. Very rarely, the solution is to give up. There is almost always something more that can be done

What’s in It for Me?

Ultimately, self-advocacy is about having your voice heard. It is about empowering yourself so that you can be in control of your life. It eliminates the possibility of other people speaking for you, who may not understand you, or what your needs are. Self-advocacy allows people to live up to their own expectations – rather than the expectations of other people. It allows people to be more included in the world, access equal opportunities, and obtain the resources that they need to maximize their health, education, independence, or employment goals.

To learn about River Oaks Psychology, visit www.riveroakspsychology.com and follow River Oaks Psychology on Facebook, Instagram, Twitter, YouTube, and LinkedIn.

Lauren Presutti is a psychotherapist and advocate for individuals and families affected by disabilities of all types. Presutti Counseling provides mental health services, while Presutti Advocacy provides consultation and advocacy support services. Born with Muscular Dystrophy and using a wheelchair throughout her life, Lauren is passionate about helping others overcome barriers and reach their fullest potential. Lauren also enjoys writing, speaking, and providing education on subjects relating to mental health and disability advocacy.

The National Paralysis Resource Center website is supported by the Administration for Community Living (ACL), U.S. Department of Health and Human Services (HHS) as part of a financial assistance award totaling $8,700,000 with 100 percent funding by ACL/HHS. The contents are those of the author(s) and do not necessarily represent the official views of, nor an endorsement, by ACL/HHS, or the U.S. Government.