Advocacy: Any action that speaks in favor of, recommends, argues for a cause, supports or defends or pleads on behalf of others.
It’s a polarizing word, advocacy. How do you feel about it? To some people it conjures up images of protests and discord. Not to me. For me, it is a symbol of strength; an attempt to make whatever-it-is you are advocating for better for whomever-you are advocating for. When you have a child with ASD, you constantly find yourself in a position to advocate for them. It’s like the mama-bear syndrome on steroids. You see your child in a way others don’t. You understand the abilities they have hidden to most by their “disability.” You want the world to see your child through your eyes and ensure they have all the opportunities worldly available. The weight of advocacy for a parent of a child with special needs can be heavy. Sometimes we might not even realize we’re doing it?
If you think about it, we start advocating for ourselves at a very young age. Negotiating with parents, siblings and teachers for things we believe will make our lives better. For me, I vividly remember getting a new jacket for Christmas when I was 5. My parents said they only wanted me to wear it for special occasions. I wanted to wear it all the time. So, I made my case to them and argued for my cause. Even at 5 years old, for something that now seems innocently-trivial, I recognized the need to make an argument, negotiate and persuade.
Advocacy is an important and relevant part of our lives. Far more so if we are advocating for those who cannot do it for themselves. If you perceive advocacy as uncomfortable and confrontational, I’d challenge you to change the narrative. View it as helpful, collaborative and focused on achieving a win/win result. In advocacy as in life, making an effective argument or pleading for your cause can improve the lives of the people you are advocating for.
Advocation doesn’t come naturally for all of us and most of us will find moments where we are stymied about how to fight on. If you are struggling with how to begin or are stuck, here are some ideas for you.
1. Arm yourself with information. Research and understand the situation at hand. Know the players and their roles. Understand what their goals and win conditions are and compare those to your own. Build your argument and persuasions around finding a common ground. This will give you a sense of confidence and a solid foundation for stating your case. Maybe it’s an IEP meeting where you are working with service providers or transitioning into a new situation. Knowing the basics clearly will help you negotiate for the best outcome.
2. Dig deeper. If the initial answers you find don’t bring the solutions you are hoping for, keep digging. Ask others for help. Talk with friends in similar situations, professionals you may know and network to find out more (MAP could be a great resource. Have you joined our Facebook Group?). The more well-rounded information you have, the stronger your case will be.
3. Stick to your guns. Don’t be afraid to stand firm in what you are advocating for and why you feel it is important. Recognize that those on the other side of the table have their own agendas – which, while they may not be diametrically opposed to yours, they may not fully align either. Their first knee-jerk response may be “no,” as “no” answers are much easier than saying yes, especially if it is something out of their usual purview. So, go in expecting “no” answers when you are advocating. Build your arguments and counter-arguments and be prepared to stand strong.
4. Bring in the big guns. If your advocacy has run into roadblocks with no solution and/or you simply don’t feel comfortable in your role as advocate, there are always people who can help. Rather than cut and run or accept a non-ideal conclusion, if it is important to you or your advocates, seek outside help. At MAP, we have a number of autism-related advocacy groups on our site that specialize in helping people, be it with education, accessibility or inclusion. Recognize that you are not necessarily alone in your fight and, if you believe in your cause, bring in resources that can help impact the outcome.
Recently, I was awed by a woman who founded an organization that advocates for people with ASD and developmental disabilities. Wow. She has taken advocacy to a higher level; going to the state and impacting legislation. With her advocacy, she is bringing awareness and cessation to underfunding the services in our schools and workplaces for people with special needs. Inspiring, right? She has built an organization to educate and provide events to help people learn and advocate for themselves. Spoiler alert! Next month on MAP chat we will be talking with the founder of this amazing organization, Arzu Forough. Stay tuned!
After speaking with Arzu, I reflected on all the ways I have advocated for Macy. And while Arzu has taken advocacy to a very high level, it is important for all of us to realize that we can be advocates in a small, medium or large ways. But we can make an impact, a difference. I invite you to come back next month to watch our MAPchat with Arzu Forough, President and CEO of Washington Autism Alliance. In addition, see all MAP’s resources and information to help guide you in your journey for advocacy. We are here to help and be a support for you in your advocacy journey.
Marikay Cuthill is mother of Maci, a vibrant, curious 16-year-old on the Autism Spectrum, and the founder of Maci And Pebble, a community dedicated to helping people navigate autism by finding answers, direction and peace of mind. Learn more at www.maciandpebble.com
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