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It’s been about 18 months since I decided to make a life change and advocate for myself (and, coincidentally, since I’ve updated this blog, oy…). I took six months to do things I hadn’t done in far too long.

I slept.
I hiked and I kayaked.
I laughed.
I got healthy, mentally and physically.
I renewed relationships and spent more time with friends.
I got to know all of the Housewives.

I remember sitting in my favorite Troy coffee shop during that time, confiding in a friend that I was scared of being suddenly jobless. That there were demons creeping back. Memories of the years where I wasn’t able to find employment due to disability and moments of consequence that had left permanent scars. I remember the look on my friend’s face hearing the dehumanization I had experienced. And it made me remember how I felt during the years it happened. It made me angry, but determined.

In 2012, after that coffee shop conversation, I wrote:

As I sit here contemplating what will come next after resigning from a perfectly profitable company, I won’t pretend that these fears and these moments aren’t still with me. They are. A small part of me is terrified. But the larger part of me knows that we all have to act as our own advocates and fight for the things we need, when we need them. Even when it’s hard. Maybe especially then. That’s what I’m doing.

At the time, I didn’t know advocating for myself would land me in a role, and with a company, that I love. Newly inspired and constantly creative.

I didn’t know meeting my friend for coffee that day would introduce me to other great things, like an agency called Disability Rights New York (DRNY). But it did.

DRNY is the designated Protection and Advocacy System and Client Assistance Program (P&A/CAP) in New York State. Its goal is to protect and advance the rights of adults and children with disabilities through advocacy, coalition-building and litigation. DRNY fights and advocates for people who don’t always have a voice to ensure they are heard and that their rights are being met.

As of this week, I get to help them with that goal.

I’m quite honored to have been voted to DRNY’s Board of Directors where I will be able to lend my experience and my insight, both as a marketer and an adult living with a disability, to the agency’s fight. A fight I’ve always faced for myself, by myself. Now I get to do it for others, and with back up.

This is a new moment of consequence for me. One that I hope will lead to even more positive change. I am once again determined, and also inspired.

You’ll be hearing a lot more from me about DRNY and the work that has to be done. You can read more about its protection and advocacy programs on the DRNY website and, of course, you can also follow them on Facebook .

It’s kind of spectacular when you think about it…through coffee and a blog post, a new adventure of advocacy begins.

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Six weeks ago I resigned from my position at Outspoken. Since then I’ve been thinking more about the other moments that have shaped me along the way. Maybe it’s because I know I’m in the middle of A Moment right now – after all, saying “yes” to any of the offers on the table will change my course – but this is also the first time I’ve been unemployed since I was a recent college grad. And while eight years later my situation and my circumstances are (thankfully) quite different, it seems inevitable that the memories from that time would creep back.

And they have.

We all have those moments of consequence, those defining stories that, when you put them together, create your story and your lens. It’s your job to remember them. Even if at the time all you want to do is forget.

I remember sitting in an oversized green chair at that Starbucks in Camarillo, CA waiting to meet her.

I remember staring at my resume, staring at my references, and staring back at the floor, in loop.

I remember trying to convince myself that I deserved this help.

Then my case worker walked through the door. I had a case worker now.

Her name was Pat and she was with the Department of Rehabilitation Services, an agency that provides advocacy for people with disabilities and helps them become employed in their communities. She was warm and genuine. She was my case worker. She was going to help. Read more »

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If you haven’t watch Ze Frank‘s An Invocation for Begninners, carve out three minutes of your day and do so. There aren’t too many pure voices left out there on the Web. But Ze’s is one of them. And I couldn’t be happier that he’s back making videos. And I couldn’t be happier that he’s made this video. Watch it and then be it.  

I’ve transcribed some highlights below, things that stabbed me in the chest and stayed with me.  I’m sure you’ll find your own soundbytes. But only if you’re smart enough to hit play.

 

“Let me think about the people who I care about the most. And when they fail or disappoint me I still love them, I still give them chances, and I still see the best in them. Let me extend that generosity to myself.”

“Let me find and use metaphors to help me understand the world around me and give me the strength to get rid of them when its apparent they no longer work.” 

“Let me thank the parts of me that I don’t understand or are outside my rational control like my creativity and my courage. And let me remember that my courage is a wild dog. It won’t just come when I call it. I have to chase it down and hold on as tight as I can.”

“Let me remember that the unintended meaning that people project onto what I do is neither my fault or something I can take credit for.” 

“Let me remember that the impact of criticism is often not the intent of the crtitic. But when the intent is evill, that’s what the block button is for.” 

“Let me not think of my work only as a stepping stone to something else. And if it is, let me become fascinated with the shape of the stone.”

“There is no need to sharpen my pencils anymore. My pencils are sharp enough. Even the dull ones will make a mark.”

“And, God, let me enjoy this. Life isn’t just a sequence of waiting for things to be done. “

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It was the summer of 2008 when I received that first email from Rick Calvert. He was working to put together a Blogging for SEO panel at the second-ever Blogworld. Lee Odden had been tasked with casting it and, somehow, my name came up as a possible speaker. It wasn’t the first time I had ever been asked to speak at an industry conference, but it was the first conference where I wanted to say yes. And that presented a problem.

Or, more accurately, it presented a meltdown. Because at that point in my career no one knew that I stuttered.

My initial reaction was that I wanted to do it. That this was the right opportunity and the right audience. But before I could agree to the panel, I felt it was only right to let both Rick and Lee know about my speech difficulties and to make sure they were comfortable with it. To their credit, neither one of them blinked.

Unfortunately, I did.

I told them I wanted to think it over.

And I really did think it over. I consulted with close friends and colleagues and asked for their advice. Most told me to go for it. That I’d be great. That people could benefit from what I had to share. Two people told me to let it pass. That I wasn’t ready. That I needed to start smaller. That they didn’t think I was ready for the comments that would surely come about the girl who can’t talk.

And because it’s easier to listen to the people who confirm your fears than those who challenge you to break them, I chose not to speak.

Three years later, I still haven’t. Read more »

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While I’m focused on separating the soggy label from my beer on a visit home, my dad recounts my childhood stories. Conjured up is Liz Farkas (my once-best friend), John Matthews (the boy who promised to marry me at 5), but then he mentions one story I wasn’t expecting.

“Remember when you stole thousands of dollars from me and moved to California?”

My beer shatters hitting the concrete.

You have to know that this isn’t the man I grew up with. Age and disease have given him a kindness and a light in his eyes that wasn’t there before.

Growing up, my dad was the type to hit, break, and ask questions later. When you have money, the hole in the wall is a remodel. It’s that you wanted a new television, not that it shattered at the bottom of the stairs. Money makes rationalizing easy. So easy that you don’t notice the nervous wife or the three shaking children behind her.

But we always stayed. Like many abused women, my mother didn’t work and had been cut off from friends since before I was born. I’d sit with her on the couch as she’d rock herself back and forth in the dark. She’d cry for her freedom, always calling him by his first name. As a child, that’s how I learned to separate them – Frank and daddy. When I reached my teens, the lesson she was giving seemed obvious: If she had money, we could have left. Money made you safe.

So I became a hoarder. Read more »

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Five days in New York City and my body, my brain and my mind need a break. Summoned down for business, I’m heading back to Albany fresh out of firm handshakes and forced smiles. I grab my bags, exit the Hilton on 6th, and hail a cab a few blocks away from the hotel congestion. This isn’t my first rodeo and I need to get out of here. Almost instantly, a cab stops.

“P-penn station, please”

I slink into the backseat low enough so I can no longer see my driver in his rearview mirror. It’s easier for me to turn off if I can pretend he’s not there. I let out what I’m sure is an audible sigh. He surprises me by responding:

“Do you know that you’re blessed?”

Please, not now, I think. He repeats himself.

“Do you know that you’re blessed?”

“Yes? I mean…What?” “Are you familiar with the story of Moses?”

Three years at St. Anthony’s High School on Long Island, memories of spirited debates in Mr. Kelley’s 7th period Theology class and one itchy Confirmation dress remind me that I am familiar.

Moses is the stuttering prophet. I’ve been discovered. Read more »

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Last week Twitter bud Ryan Knot sent me this video. In it, TED speaker Sharon Emery talks about the disabled listener and how the reaction of a fluent speaker (I like to call them “show offs” ;) ) can impact a stutterer’s speech and the size of our voice, without the other person ever realizing it.

Please watch.

 

If you don’t stutter, you probably just winced your way through that. If you are a Person Who Stutters (PWS), you giggled. Because you know. There’s a lot I could and would like to say regarding that video, but I thought I’d start with this:

I have no interest in playing the role of The Stuttering Friend in the Lifetime movie of your life. And I’ll stop talking to you if you try and make me. :)

I’m told often that I’m “brave” or “courageous” because I speak in spite of disfluency. To me that’s not bravery. Brave is my father learning to walk on two prosthetic legs at the age of 65. That’s pretty gutsy. I’m just using the voice that I have. Same as you. There’s not really a livable alternative if you think about it.

I think that’s one common misconception that people have about stuttering. The idea that because I speak differently that it’s some great feat that I do or that I surely must view myself as disabled. I don’t, I never have, and I’d kick myself if I did. I don’t need fluent speech; I need you to listen to me. Read more »

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My father lives confined to the surgical bed in my parent’s den. A tough existence for anyone, but harder for someone who once ruled Barone Manor with sharp suits and an iron fist. A father who was always loved by his children but, if we’re being honest, they were also smart to fear. 

But that was then. Before a disease got the edge. Today, suits have been replaced by undershirts and he only leaves the house via the ambulance that carts him to dialysis. If you knew him then, you barely recognize him now.

Seven years ago my father lost his left leg, toe-by-toe, to diabetes. He’s spent the last eight months restricted to his at-home surgical bed fighting to save his right leg. Despite staying off it as ordered, the foot is dying from lack of oxygen; it’s becoming septic. The doctors haven’t told him yet, but he knows. We all know. It’s time to save his life and take the other leg. But he’s vowed he’ll die before he sees it happen. Content to avoid the conversation and the anger, the doctors, for now, pretend there are alternatives.

In town for a few days, I visit my parents. My mother and I powwow in the kitchen out of earshot to talk options. When terms like “nursing home”, “rehab” and “long-term solutions” are discussed, I poke my head around the corner to watch him. He looks defenseless, childlike even, chewing his shirt, talking to the people on TV and riffling through his “camp bag” – the blue tote that holds his books and movies for dialysis. He catches me watching him and waves his stump hello like an elephant maneuvering its trunk.

It used to turn my stomach. Now I can’t help but smile. Read more »

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As I mentioned last week I was asked to read my piece The King and Us, Myth and All as part of the Bookmark series that took place during Troy Night Out.  My friend and follow unicorn Pam was kind enough to film it for me.  If you’re interested, check it out below.

Overall, the experience was a really positive one. I think it was powerful for people to hear the words and the voice simultaneously and to be able to connect them. I had several people come up to me after the reading and say they had seen the article in the TU but that they really enjoyed hearing my reading of it.  It was important – both for them and also for myself.

This also marks the first time I’ve seen myself stutter in quite some time. It’s always a bit funny to compare how you think something went in your head to how it actually played out.  I felt good reading it and I’m very comfortable with the video version. It’s not perfect, but it will never be. What’s important is that I shared my story and that a conversation was opened.  That’s worth taking a risk for.

It was a great night. One where many inspiring stories were shared and where I could introduce friends and connect a few circles.  Thanks to everyone who came out to support me. It meant a lot to have so many good friends there and people whom I’d be lost with out. 

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A bit of an update:

The King’s Speech was released earlier this year and opened up an opportunity for those of us who stutter to have a real conversation with the public, one we, perhaps, haven’t had before.  On the heels of the movie and before the Oscar’s took place, I wrote a piece about the myths I thought were perpetuated through the film and where I thought we were actually moving the discussion backwards. I was lucky enough to have my article picked up by The Time’s Union.  If you’re interested in reading it, it’s entitled The king and us, myth and all and is accessible on the TU Web site.

Also worth noting, if you’re local to Troy, NY,I’ll be doing a reading of that piece for Troy Night Out (TNO Facebook page), reading aloud and then answering questions about my process writing it and, I believe, what goes into writing memoir as a whole.  That’s taking place Friday, March 25 at 7pm at the Art’s Center of the Capital Region.  Do stop by, if you can. A few of my classmates will be reading pieces they’ve written and they’re going to be fantastic.

Other than that, with busines and life settling down, expect posts more frequently over here, though perhaps not as polished as the ones previously posted. We’ll see.

Stay tuned. ;)