I had a FASCINATING conversation with another “gladiator parent” (whom I will call “Maddie”) on Thursday evening that challenged me on so many levels. This conversation has stuck with me, and it’s no surprise that this dialogue sparked tonight’s blog.
My initial gut reaction to her Facebook post, “Another thing to stop calling yourself and others in 2018 – self-advocates,” was shock and disappointment. I just couldn’t picture someone being disturbed by this term which has fueled my fire for years both personally as a mother and professonally as someone who provides community outreach and promotes programs that will encourage success. No matter how much an individual seems impacted or impaired by their diagnosis, I believe with my entire being that everyone has something to offer this world. I believe that no matter what one’s expressive or receptive delay may appear to be, that a person understands and is capable of so much more than we often acknowledge. I believe that everyone is able to advocate for themselves on some level, and that such advocacy should be encouraged and facilitated.
And … what is wrong with that, I thought? Isn’t this what we want? Isn’t this what parents like myself give our blood, sweat and tears for to ensure optimal independence and civil rights?
Maddie challenged me to think beyond what someone in the disability and neurodiverse community see as an ableist term. “Self advocacy” can be used to describe, for example, a non-verbal adolescent with autism who has difficulty expressing themselves effectively to ask for a drink of water or to use the restroom. They advocated for their needs. Therefore, they “self-advocated.”
As Maddie continued to share her views and explain her stance, I was led to thinking about a phrase I personally cannot stand, which is “children with special needs” or worse yet “special needs children (where we put a label before the child and make their struggles their identity).” Think about the example I just gave. Is drinking a glass of water a “special need?” Is using the restroom a “special need?” Those are essentials. Let’s dig further … is going to school to receive an education a “special need?” Is dressing oneself and knowing how to take a proper shower a “special need?” Is being able to initiate or sustain a friendship a “special need?”
What happens when people – no matter their abilities – self-advocate but also demand that their needs be met, demands that their rights be given, and demand the respect they deserve and should not have had to work to earn?
Maddie pointed out to me that they undoubtedly become … activists.
What is an activist?
They scream, they shout, they cry, they fiercely and unapologetically demand that we take notice of their radical action. They put in, as Maddie shared, “emotional labor” into making this world take notice of their accomplishments, abilities, talents and equal rights. They then take the extra step in showing that others deserve the same without question.
To further support this position, let’s look at MLK Jr. Mother Teresa. Harriet Tubman. Gandhi. Temple Grandin (perhaps the most famous of all adults so beautifully representing the spectrum). Would we call them advocates … or activists? Of course, they are known as activists. These are people who self-advocated for their own rights, and then continued to scream and shout from the mountaintops to command positive change in our world. Activists certainly need the self-advocacy “toolbox” as Maddie agreed. But to suggest that a self-advocate can only want what is best for themelves and not set (or WANT to set) an example for others who face the same struggles and barriers faced can indeed be dismissive. I was reminded of one of the powerful phrases ever engrained in my soul by an autistic activist and change agent, William Stillman – presume competence.
Maddie humbled me so greatly when she said that my work, and my son’s fight to become who he wants to be are both blazing a trail to make the world a better place as her children grow. I hope I never become jaded or numb to the immense gratitude I feel for someone who believes that even the smallest step I have taken has touched their heart.
Our discussion continued for a few more exchanges, and I opened up to her a bit (as I have again in many instances in recent weeks) about what I’ve referred to as one of the most professionally challenging years of my life, 2017. What I am referring to specifically, of course, was being backed into a corner with no reasonable option other than to pack my office and vacate a position that supported my livelihood and put my family at significant risk. I had no “Plan B.” I had no savings. I had no other job secured. I walked away.
But what I took with me – my dignity, my values, my beliefs, my ethics, my vision, my conviction, my courage – were and will always be priceless. I have no regrets, and never will.
During that difficult time, my son who was directly impacted by the situation that triggered my decision, wrote a letter to the person who hurt him so deeply with their discriminatory words. I remember thinking … “wow, he truly is an amazing self-advocate.”
And … he is. Christian is an amazing self-advocate, and a powerful one. That letter, though, isn’t just about him. It’s about each and every person that this organization claims to stand for. He truly has stepped beyond self-advocate, and is an activist.
You don’t need to change seats on the bus or march with signs on giant sticks to change the world, Maddie reminded me. You simply need to use your voice to create a ripple effect that goes beyond yourself and touches others.
Thank you, Maddie, for the brilliant discussion and allowing me to open my eyes and heart even further. I hope this post and this perspective does the same for others.
Signing off for the night, wishing everyone much peace and love,
Advocate Activist ✌