Choosing the Path of Advocacy – A Personal Commitment

guidetoheartI have always followed my passions for as long as I can remember. I have always been very goal oriented and my goals follow my passions. I go where my passions lead me; unfortunately the road has been anything but easy. I am an autistic adult. To be more specific, I have Aspergers, but I didn’t know it until I was 36 years old.

For one of my classes, I was required to read Indian Creek Chronicles, written by Pete Fromm. This book is a personal journal of Fromm’s account of seven months spent alone in a tent guarding salmon eggs in the Selway River Valley in Idaho. Unlike Fromm, who had opportunities “fall on his lap”, I had to plan and work hard to follow my passions. I grew up not knowing I was autistic, I didn’t have any help and I struggled, but I was determined.

Growing up, I didn’t have to listen to the things that are said about autistics today. I wasn’t told that, because I am autistic, I couldn’t get an education, or be gainfully employed, or have a family, or be considered a danger to society. This is what kids are hearing these days and it is totally false. These days more and more kids are getting services at school, teaching them skills that for most people seem to be intuitive. I never got services, but I persevered and I followed my passions. It cost me though.

Autistic burnout ListI have experienced Autistic Burnout multiple times. The first time was the worst, because it was associated with me developing PTSD from a medical trauma.  We didn’t know I was autistic at the time and did not understand what was happening to me. I got the wrong help and it took years to climb out of the darkness I had fallen into. Autistic Burnout can cause a person to lose their ability to function. At the time all I knew was that I had two little people who needed me, my son and my daughter. I had to keep going. I still feel the pull of that darkness from time to time.

To keep myself from falling back where I was I have to pay close attention and make sure I rest when I feel overloaded. I have to reduce triggers whenever I can. This can be very difficult as a teacher. Even though I love to teach, it has taken a toll on my mental and physical wellbeing. I have had to make adjustments. Even though I am an adult, I still experience meltdowns. You don’t grow out of them; you just learn how to handle them better. I have to allow my body to go into what I call “shutdown mode”. I need to allow my body to reboot itself so I don’t go back to that dark place.

C-S-Lewis-Integrity-e1368209736261Through my journey of discovering my neurology and that of my children, I have found that I am very passionate about advocacy. Due to what I have been through, I have an understanding of the struggles many people face.  Social justice is something that seems to be felt strongly amongst the variety of autistic people that I have encountered.  I am no different.  I seem to have this very strong inclination to always do the right thing, whatever the right thing may be even if it hurts me in the process.  Things such as honor, integrity, and respect are all virtues that I hold very dearly. These virtues were not necessarily taught to me.

I come from an emotionally abusive home life, and I was determined to rise above it, not allowing the abusive pattern of generations of my family to be passed on to my children.  I was determined to put an end to it.  This determination spread out not only to my children, but to my students and then to my community as well.  The abuse, the lack of understanding, and the lack of willingness to provide accommodations and modifications that allow another to reach their potential needs to stop.  We are all humans regardless of our neurology.  We all feel emotion.  We all think. We all have a “voice”.  We all have our individual strengths and weakness.  This means we all need each other to make it through our days. No one is fully self-reliant.

declaration-independence2How do you get people to see that a person who does not function in a typical fashion is still a valuable member of society, that they deserve the same rights and as the others that do function in a manner that is typically expected? This is where advocacy comes into play. Advocacy is when you not only fight for change in policies that negatively impact peoples’ lives, you are also providing a possible solution to a problem and building support for acting on both the problem and the solution.  Examples would be fighting for the right to be educated, marriage rights, voting rights, housing rights, and reproductive rights, disability rights, fighting for clean water and clean air, and fighting for healthcare for all.  If advocacy is about fighting for your own rights and the rights of others, then what is self-advocacy?

According to Wright’s Law, “Self-Advocacy is learning how to speak up for yourself, making your own decisions about your own life, learning how to get information so that you can understand things that are of interest to you, finding out who will support you in your journey, knowing your rights and responsibilities, problem solving, listening and learning, reaching out to others when you need help and friendship, and learning about self-determination.”

Wright’s Law also explains the reason why self-advocacy is so important. It is “so that you have the knowledge needed to succeed and are given the chance to participate in decisions that are being made about your life.”

KeychainThis is why organizations such as ASAN (Autistic Self Advocate Network), GRASP (The Global and Regional Asperger Syndrome Partnership), AWN (Autism Women’s Network), and many local organizations such as ANUE (Advocates for Neurodiversity and Unique Empowerment) in Spokane, WA, for which I am a Founding Member of, are so important to people like my children and I. These various groups are membered by advocates and self-advocates who provide, information, support, and possible solutions to problems that people are having.   These organizations give a voice to those that may have not found their own yet or help make voices that are being silenced and ignored even louder.

Notice that I did not list Autism Speaks.  Autism Speaks tends to cater to parents and family members of autistic people, not the autistic people themselves.  Autism Speaks has a habit of promoting fear about Autism instead of acceptance.  They promote eradication through their push of finding a cure instead of promoting the message that autistic people have value in our world.

How does one help an advocate and a self-advocate? First, listen to them. Their concerns are valid and ignoring them and explaining that it is not that bad or the problem does not exist does not help people.  It makes the situation worse. Second, help a self-advocate understand their rights and responsibilities.  Self-advocacy is about empowerment and the more knowledge a person has about the problem, the better prepared they are in finding a solution. Third, help with stress management.  Advocating for yourself and others can take a heavy toll on you, mentally, emotionally, and physically.  Self-advocates need support and understanding and so do advocates.

I was never taught about advocacy as a child and I had no idea how to be a self-advocate, but that did mean I couldn’t learn as an adult. I first learned to be an advocate when I became a parent.  Something in me was not going to let the same negative things that happened to me happen to my children.  In the process of learning to be an advocate for my children, I learned to be an advocate for myself.  For me, it has been harder to be a self-advocate than an advocate.  This is why support is so essential.

helping handI have found some amazing people to help me along the way.  Like the people at the Arc of Spokane and the people involved with ANUE.  I have also been able to build a support network online as well.  Help is out there, but it is not always easy to find.  I often tell people right at the beginning that they are not alone.  I spent too much of my life alone, without a voice, and no way to ask for help.  I don’t want anyone to feel like I did.  Even if I can’t help the person directly with their problems, I know that I can at least let them know that they are not alone and that they will make it through.  Appropriate words of encouragement can go a long way in helping a person through difficult times.

The statements below contrast encouraging statements that imply faith and respect with discouraging statements that convey doubt and disrespect.

THE LANGUAGE OF ENCOURAGEMENT (Evans, 1995, Dreikurs, Grunwald, & Pepper, 1982)

Encouragement “I think you can do it.” “You have what it takes.” “You’re a hard worker.” “What do you think?” “I could use your help.” “It looks like a problem occurred. What can we do to solve the problem?” Discouragement “Here, let me do that for you. “Be careful; it’s dangerous.” “Don’t forget your assignment.” “Let me give you some advice.” “When you’re older, you can help.” “I told you to be careful.”
Encouragement “You put a lot of effort into your work.” “You’re a fine person.” “I know you did your best.” Praise “I’m proud of you when you do well.” “You did better than anyone else in the class.” “Next time, if you work harder, I know you can get an A instead of a B+.”

In life, I follow the three C’s – you have to make a choice, to take a chance, or nothing will ever change. My choice is to make the world a better place through advocacy and education.  As an advocate:

  • I pledge to create an environment of encouragement rather than discouragement.
  • I pledge to fight for the rights of others whose voices maybe silenced or ignored.
  • I pledge to fight misconceptions and educate those who insist on spreading those misconceptions.
  • I pledge to provide a respectful ear to those who need to be heard, but don’t know where to turn.
  • I pledge to help people achieve success by providing solutions to problems, instead of just saying it is not my problem.
  • I pledge to do what is right in the face of adversity.

“One voice can change a room, and if one voice can change a room, then it can change a city, and if it can change a city, it can change a state, and if it change a state, it can change a nation, and if it can change a nation, it can change the world. Your voice can change the world.”

– Barack Obama

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References

Berrington, Lucy. (2013, Nov. 14) A Reporter’s Guide to the Autism SpeaksDebacle. Psychology Today. Retrieved from https://www.psychologytoday.com/blog/aspergers-alive/201311/reporters-guide-the-autism-speaks-debacle.

Goodreads. Barak Obama Quote. Retrieved from http://www.goodreads.com/quotes/62978-one-voice-can-change-a-room-and-if-one-voice.

Evans, Timothy. (2005, Feb.) The tools of encouragement. Online Journal of the International Child and Youth Care Network. Retrieved from http://www.cyc-net.org/cyc-online/cycol-0205-encouragement.html

Wright’s Law. Self-Advocacy. Retrieved from http://www.wrightslaw.com/info/self.advocacy.htm.

Zurcher, Ariane. (2013, Nov. 13) What’s Wrong With Autism Speaks? Emma’s Hope Book. Retrieved from http://emmashopebook.com/2013/11/13/whats-wrong-with-autism-speaks/.

** Each image is linked to its source.

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