The Caffeinated … Activist?

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,
Your Caffeinated Advocate Activist ✌

The Latest Forecast …

is a 100% chance of a full blown cyclone of intention, showers of radical action, and a brisk declaration here and now that it’s high time I moved forward with The Caffeinated Advocate.

I created a Facebook page in 2015 with an intention to create a social media page to align with a blog to “brand myself” and my work. Children and teens, do you remember the 90’s remember the album “Everyone Else Is Doing It, So Why Can’t We?” (RWG, Dolores O’Riordan). Well, yeah. Why can’t I brand myself, too? Why haven’t I shared more of my story, my beliefs and my thoughts beyond posts with inspiring picture quotes or coffee selfies (#cathyrunsondunkin, baby) on Facebook? Why haven’t I moved forward until now?

If you know me, you know I thrive on and enjoy writing, as I find peace and rejuvenation through written expression. If you have known me for a relatively a long time (and know me well), you know that I started writing a book years ago to document my journey to date through the autism spectrum with Christian. When my portable drive crashed years ago and I lost several chapters I had written, I lost my energy and my nerve. I remember I had stopped at the part where I share the devastating incident that led to receiving my son’s diagnosis of autism. I completely froze! I think there was a part of me that was relieved that I had lost the work, as much as I had put into what I had done to date. I didn’t have to rehash – and *FEEL – every painful moment I experienced from that time period.

Shortly thereafter, I began to struggle with my own demons as I tried to cope with the death of my father, supporting my mother, raising a boy with challenging needs and working (well beyond) full time hours. All of those – and so much more – will be touched upon in future posts, that you can count on.

Back to the word *FEEL … I have finally reached a point where physically, emotionally, and spiritually, I fully embrace how I feel. I am transparent with others about 95% of the time (a gigantic step for me) regarding how I feel. I am confident with how I feel. I am honest with how I feel. I am not afraid to feel and I am not afraid to say how I feel. More than ever, I believe I have found my voice.

You’re going to hear much more of that voice. When I’m silent, I encourage my friends, family, and future readers to nudge me when I’m quiet. Hold me accountable. Ask me questions. Remind me I am a gladiator, even when I feel like I cannot pick up my sword.

As motivational speaker, author, blogger and social media ninja Lisa Nichols (one of my biggest inspirations from 2017) declared long ago to her fans, “your story is NOT your story. Your story is meant to bless others.”

It’s time to open myself up further to this world – this entire world – and show everyone who I truly am … especially now that I have finally learned who I am as a woman. It took almost 40 years to find her, to know her … to … love her.

Hi, I’m Catherine Hughes. I’m The Caffeinated Advocate, and I’m so glad you’re here.