Self-Advocacy with Loved Ones and Caregivers is Key to Empowerment

Two people sitting on a park bench, one of them holding a white cane and the other offering assistance

Holidays will bring families and friends together. It’s a good time to remember good self-advocacy practices.

Self-advocacy is a tricky combination of speaking up for yourself and knowing when and how to do it. It requires clear communication about what you don’t need as much as what you do need. Council Executive Director Denise Jess developed her approach to it over time. Initially, she felt hesitant to ask for help, not wanting to be a “bother.”

“Letting go of that took a long time for me,” Denise says. That timeline was perhaps extended by what Denise calls her independent streak, a healthy state of mind that drives a good, “I got this” mentality.

Experience led Denise to a working definition of self-advocacy. “For me, self-advocacy is acknowledging that I’m the one who’s closest to my experience. I know it the best. If I can advocate for myself, I stand a much better chance of getting the results I’m seeking than if I hand it off to someone else.”

For those just starting to be intentional about advocating for themselves more strenuously, Education and Vision Services Director Amy Wurf recommends choosing someone to share and strategize with. “Find someone you can trust, then explore advocacy skills with them,” Amy says. Perhaps a little role playing is in order. “Can I practice this with you? Can I say this?” Amy suggests asking. In general, both in practice and in real settings, Amy says, “don’t feel bad about asking for what you feel is important to you. It’s okay to want the things that are going to help you be your best.”

Denise says self-awareness is important, and it’s something that can be partly cultivated by the exercise offered above. “Just knowing what the situations are where I really could use assistance,” poses Denise. “Having them identified so that when I encounter them, I don’t have to ask whether I can do this thing.”

Denise suggests creating a mental index of tasks you can accomplish independently and which would be better doing with assistance, starting with the no-brainers. “There are simply some things that are going to take an inordinate amount of time,” says Denise. “And I don’t overthink it.” She describes the tedious task of getting something from a high shelf. Why take the trip to another room, find a chair, and navigate back to the kitchen when, if a taller person is around, they can reach it for you?

Of course, while an out-of-reach kitchen shelf can be out of one’s control, Amy reminds us that there are plenty of steps in and out of the home a person can take to empower yourself as much as possible. Those steps may require initially asking for help as part of the empowerment process. “Asking for the menu in a font size that you can read,” Amy offers as an example. “Working your own microwave because you’ve asked for advice in putting tactile markers on the controls to make them accessible. Getting around your home because you’ve asked a vision rehabilitation professional to evaluate the lighting and learned how to make changes that work for you.”

Self- advocacy is as important in the workplace as they are at home. It can also pose a different kind of challenge to initiate. “In an employment setting, people may not want to disclose any disability. The fear is the employer will see them as not being a good employee anymore,” Denise says. “So, there’s all this masking behavior. So just ask for what you need to adapt.”

For people on the job, Amy adds, “If you are experiencing problems, chances are that others are experiencing those same problems, and they just haven’t spoken up.”

Denise also has advice to offer caregivers, friends and loved ones. When it comes to helping, “take the lead from the person who is asking,” Denise recommends. “If I’m at an intersection and ask for info about when the light changes, and you grab my arm and lead me across—that’s not what I asked for.” Another tip for caregivers is to be able to pivot. “If you’re unable to give the person what they need, then find the right person so that you’re not acting out of obligation, because that can clutter the situation.”

Finally, practicing self-advocacy can create its own momentum. “Self-advocacy reinforces self-advocacy,” reflects Denise. “If I advocate for myself somewhere along the line, I’m feeding my own empowerment so that down the line, I have the energy to do it again. People think self-advocacy needs to mean that I have to go it alone. But it really means knowing what I need to achieve and knowing who and what resources are needed that might help me achieve it.”

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