Editor’s note: Be sure to watch our archived webinar on Self-Advocacy and Low Vision.
By: Cindy Schaffner, VisionAware Peer Advisor
As Melanie Peskoe noted in her recent post on self-awareness, self-advocacy can be a common struggle for people who are blind or visually impaired. Having the confidence, courage, and know-how to speak up for your rights, needs, and accommodations can be mentally and emotionally challenging. In this post I share some tips and advice that will hopefully assist in growing and improving in self-advocacy skills.
What is Self-Advocacy?
“Self-advocacy is the action of representing oneself or one’s views or interests,” as defined in the Oxford Dictionary. Specifically, as it relates to life with a disability(ies), it is speaking up for our rights as stated in the ADA (Americans With Disabilities Act) and our needs such as accommodations, technology, transportation, equipment, etc. The purpose of advocating for our needs and rights is to provide equality in education, the workforce, as well as public areas, services, retail, etc.
Why Is Self-Advocacy Important?
Due to the complexity of our brains and eyes, the spectrum of blindness is vast, and our experiences of sight loss are very individualized. We cannot expect others to read our minds or automatically know our needs without communicating them. Thus, speaking up when you have a need or when needs are not being met is vital to our independence and to successful life endeavors.
As we pursue overall happiness in life, it’s also important to keep in mind that we cannot be happy if our basic needs are not being met. I often ask people to refer to Maslow’s hierarchy/pyramid of needs. If you consider this pyramid of needs and how a visual disability can impact each level of the pyramid, you can begin to see the significance of having your needs associated with your disability met and its importance to your overall happiness.
Tip Number One: Develop Self-Advocacy Skills
Self-advocacy is a learned skill. Whether you are new to sight loss or experience constant changes in your vision, no one is automatically equipped with the knowledge and communication skills it takes to self-advocate right out of the gate.
Give yourself time and patience to figure out what your needs are and how to communicate them appropriately. As we are processing and determining the appropriate language to communicate, we also need time to educate ourselves on resources, technologies, and various ways of accommodations applicable to us. Additionally, we must then consider the time it takes to determine our preferences for such things.
It is perfectly fine to admit you do not know what your needs are yet. Often you can approach self-advocacy by just stating the problem and asking for assistance in determining the accommodations.
Tip Number Two: Discover Your Self-Value
Self-advocacy can be an emotional struggle at times because we do not want to feel different or as though we are an inconvenience. Frequently we must advocate by asking for help which can make us feel very vulnerable. Many of us can relate to feeling like we are a burden when we are constantly asking for assistance and or accommodations. This can impact our self-confidence and self-esteem, which can prevent us from self-advocating adequately.
Again, it may take time and emotional growth to discover your self-value and self-worth with vision loss before you feel confident and comfortable with self-advocacy.
Tip Number Three: Learn to Accept Your Disability
To truly improve and become a good self-advocate, it takes a very healthy level of acceptance regarding your disability. Sometimes we may want to mask, deny, or ignore our disability in social, academic, or professional settings. We don’t want people to perceive us as different from anyone else, however, when we deny our disability, we box ourselves in by not allowing ourselves to advocate for our needs when it is important. Again, this can be a difficult pill to swallow for some at times and accepting your disability completely, is a vital step that frees you up to express your needs and request accommodations. If someone is actively avoiding, denying, or hiding their disability in any way, it’s difficult to self-advocate adequately in those situations.
Tip Number Four: Model Others
One of the best ways to really learn the skills and art of self-advocacy is to model others. For youth, this can be observing parents or guardians advocating for them, or asking your blind/VIP community how they advocate given a situation. There are also many social media platforms such as Facebook and YouTube (see resources at the bottom of this page) where you can ask questions and observe various self-advocacy styles, approaches, and examples of appropriate language when communicating your needs.
I personally learned a lot from my parents going to bat for me at school when teachers failed to provide appropriate accommodations. However, I gained the most confidence when I saw my peers advocating, and in our discussions. It helped normalize so much for me, which really made me feel more confident in practicing self-advocacy.
Tip Number Five: Practice, Practice, Practice
Like many skills in life, we improve with practice. As you continue to self-advocate, you will learn the art of timing and strategy. Knowing when or when not to ask, pitching requests in the most confident way, and showing appreciation can all go a long way to making self-advocacy a more positive experience. As you learn, you will become more comfortable when it is time to really stand up with courage and strength to demand your rights and fight any infringements.
Self-advocacy is an important element of acceptance and overall happiness when dealing with sight loss. It may take patience and time to find the right language to express your preferences for technology and various accommodations, as well as the emotional strength and confidence to discuss your needs. When you’re more comfortable acknowledging your vision loss and any needs/accommodations associated with it, you will self-advocate more effectively. When you begin to feel more confident in yourself and see what works for others, you can begin to really see the benefits of self-advocacy as you practice and improve your skills.
Additional Posts on Self-Advocacy
Cindy’s YouTube channel: Living Blind
Other YouTube channels from people with low vision