#CPChatNow Hits One Year Milestone


Graphic (put together by Sarah Wambach) used to promote the first #CPChatNow

This past week the live cerebral palsy Twitter chat #CPChatNow reached the one year milestone! Yes, one year passed since John W. Quinn, Handicap This’ Tim Wambach, and I hosted the very first live #CPChatNow discussion Tuesday, December 3rd, 2013.

As public figures in the cerebral palsy community we welcomed people with CP, their family members, caregivers, and whoever else to come ask us questions about CP. Demands for another live #CPChatNow chat rose leading #CPChatNow to quickly turn into a weekly deal.

Each week new and familiar faces alike joined in. A few months later the demographic shifted to mostly people with CP evolving #CPChatNow into a support group. Every Wednesday at 8pm EST we took to Twitter to announce exciting news, vent our frustrations, and bond over experiences others with CP could best understand.

The connections we made transcended Twitter and the Internet. Two young women with CP who actually attended the same elementary school (albeit grades apart) re-connected due to #CPChatNow. Through their travels Handicap This met different #CPChatNow regulars in-person.

So far I personally enjoyed meeting in-person Blake, a young man with much potential. 2015 should see me getting the chance to meet more #CPChatNow kin in-person. No matter what 2015 brings though, the aforementioned demonstrates the real, meaningful connections made by the live chat.

Now the year also saw other commitments leave my #CPChatNow co-hosts John and Tim to step back from the weekly chat. Upcoming events however should stir new excitement within the live chat’s community.

Like the #CPChatNow Facebook page to stay informed. Join the conversation on Twitter every Wednesday starting at 8pm EST. Do so with these three easy steps listed in the following graphic.

#CPChatNow Instructions

#CPChatNow takes place every Wednesday at 8pm EST.

FYI we do still welcome participation from everyone. In other words cerebral palsy parents, caregivers, and curious strangers. Come join us! You might just find our feedback helpful.


Three-Year Blogging Anniversary

This past week marked the Off Balanced blog’s three-year anniversary. That seems crazy to me. So much from 2011 feels like yesterday. Yet here you and I sit. Well, I’m sitting. Maybe you will read this standing up or lying down. I can’t know that. Enough dickering over such detail though! Allow me to get back on-topic.

Three years ago I stated the following as my blogging goal.

“Blog-wise the title ‘Off Balanced’ still works as a pun, indicating my blog’s goal to throw misconceptions about cerebral palsy and other disabilities off balance. I plan to address these different preconceived notions in detail while also introducing you to various individuals I’ve had the opportunity as a disability beat writer to learn about and interact with over the past few years.”

Happy Three-Year Blogging Anniversary

Image courtesy of Stuart Miles at FreeDigitalPhotos.net

Admittedly I lost my focus some. Last year I used my blog here to keep myself publicly accountable for my 2013 New Year resolutions. Good stuff I believe but at the same time mostly irrelevant to cerebral palsy.

My admission brings about questions regarding Off Balanced the blog’s future. Should I re-focus on my blog’s initial goal? Or, do I move forth carrying a more open-ended attitude with subject matter? The latter may lead to moving my blog to www.zacharyfenell.com, which I’m planning a complete makeover for anyways.

Reader feedback will help me make a more confident decision. Give your input by commenting below, letting me know what you prefer to see from me. Thanks in advance for your thoughts!

Inspiration- A Third Person Concept?

Over the past six plus years I delved deeper into a word which can stir controversy amongst the disability community, “inspiration.” Prior to the past six years I probably like most people did not give much thought to the concept. I found wrestler Tommy Dreamer inspirational for his loyalty to Extreme Championship Wrestling. Additionally I found Cleveland Indians pitcher Charles Nagy inspirational for fighting his way back to the Majors after bone chips in his pitching arm’s elbow sidelined him during the 2000 season.


Image courtesy of Stuart Miles at FreeDigitalPhotos.net

What started the deeper exploration six years ago? My college professor Sister Karita telling me “Zach, you are an inspiration to anyone who has to overcome adversity.” I never considered myself an inspiration before. No, I just do what I need to do to get through each day.

However Sister Karita’s comment weighed on me. In fact they helped me decide to pen my teen memoir Off Balanced. If Sister Karita could find inspiration from my story, maybe others could too.

A few years later I published Off Balanced (buy for your Kindle or Nook) and yes, inspiration remained among the words readers used to describe the book. Interestingly enough publishing Off Balanced led me to write more about disabilities. Doing so introduced me to individuals in the disability community who rejected the praise “You’re an inspiration.”

Seems funny, right? There exist so many more worst descriptive words to object. Yet a closer look reveals valid points. Foremost, what criteria led the speaking party to utilize the I-word? If the reason entails simply living with a disability that will typically sit wrong with the “inspirational” person.

Why so? Consider the implications. Alternatives to inspiring by just living mean sulking over limitations or taking drastic life-ending action. Should the metaphorical bar for achievement in the disability community stand at smiling and possessing a will to live? I say no.

Honestly I felt hesitant typing “disability community” in the above paragraph because this topic transcends the disability community to multiple demographics. The catalyst for today’s post provides evidence, a conversation with my recently departed Aunt Ellen. My aunt died indirectly from cancer last month. I share her story in the video below.

Back in January when I went to Arizona to visit Aunt Ellen we ended up enjoying a conversation about inspiration. Said conversation went something like this.

Me: I think you’re inspirational.

Aunt Ellen: My friend said the same thing but I don’t get why.

Me: To me it’s because you are not letting the cancer and grim prognosis change your personality.

Aunt Ellen: I’m just doing what I can.

During the conversation Aunt Ellen also told me she considers me an inspiration to which I replied similarly “I just do what I need to do.” Reflecting back 10 months later I see a theme. Inspiration remains a third person concept. We see inspirations in others but we do not in ourselves.

Do you agree? Sound off in the comments section below!

P.S. If enjoyed today’s post, you may also like my video “Calling Someone with a Disability ‘Inspirational.'”

Disability and Asking for Help

A subject reoccurred last weekend spent at my alma mater Notre Dame College (NDC) for their Homecoming & Alumni Reunion weekend, asking for help. Friday evening the topic arose while talking to a face from the past. Saturday during tailgating and at the homecoming football game asking for help surfaced through actions.

On Friday I saw Mrs. Clemson, who happened to teach my graphic arts and fiber design classes back in high school. Turns out Mrs. Clemson graduated NDC in 1970. While talking to her I mentioned a specific part from my memoir Off Balanced (buy for your Kindle or Nook) about a time in high school I faced a physical challenge, three step without a rail. Rather than ask a nearby classmate for help I struggled down these steps on my own. Why? I felt too embarrassed to ask for assistance.

HelpMoving forward to Saturday walking over from the tailgate area to the football field I asked my friend to carry my drink since we needed to go across a grassy area. No big deal. I’m so use to asking friends for a helping hand the task remains second nature, a second nature I still appreciate very much and I try not to take for granted.

Anyways the real interesting asking for help came later on. I stayed outside to eat my hamburger and finish my drink. However, my friend went ahead and found seats. After I finished eating and drinking I headed inside Mueller Field. To sit next to my friend I asked four current female college students if I could get past them on the bleachers. They stood up to let me through.

Tentatively I made my way across, but I found the space still too tight to maneuver around comfortably. So without much thinking I asked “Do you mind if I use your hand?” Basically I asked strangers “Could I hold your hands?,” totally a premise to power an awkward moment. Yet I didn’t even think about the potential awkwardness until after I sat down and settled in. Emphasize potential since the girls obliged without a problem.

No I didn’t think about the potential awkwardness because I remained focused on what I needed. Really the situation speaks to a sentiment I blogged about for Handicap This Productions earlier in the year, eliminating “embarrassment” from your vocabulary. One thought I shared in said post echoes today’s point very well.

“Why is the question embarrassing? I need help and I’m mature enough to realize that.”

The same principal applies to awkwardness. Bottom line and the lesson I learned over the past 10 years, do not allow your needs to make you feel embarrassed or awkward. Ask for help if you need help and do so proudly.

*Above image courtesy of Simon Howden at FreeDigitalPhotos.net

Dispelling Cerebral Palsy Stigmas

Too often the discussion about cerebral palsy focuses on negatives, but two individuals look to help change that. Over on Twitter CPers Kate Meuser (@katethemuse) and Timmy Le (@Timmmyy_Le) began a campaign that utilizes a hash tag, #WhatCPLooksLike. As Timmy tells in his August 15th tweet,

“Starting a campaign w/ @katethemuse about dispelling #CerebralPalsy stigmas by using #WhatCPLooksLike to show what CAN be accomplished.”

#WhatCPLooksLike aims to create a positive cerebral palsy reflection

What does cerebral palsy look like to you? Photo: “Make-up mirror” by Jurii – Own work. Licensed under Creative Commons Attribution 3.0 via Wikimedia Commons – http://commons.wikimedia.org/wiki/File:Make-up_mirror.jpg#mediaviewer/File:Make-up_mirror.jpg

Obviously I’m all for the idea given I’m writing this post. Now I’m proud to know both Kate and Timmy from the live weekly Wednesday evening CP chat #CPChatNow (8pm EST). If the #WhatCPLooksLike tweets provide an accurate indicator, others from the #CPChatNow community share my sentiments.

So far according to the hash tagged tweets cerebral palsy looks like academic achievement, leadership, and athletic accomplishments. For instance Timmy shared a video showcasing him breaking a board during a Dan Tae Kwon Do exam.

Another #CPChatNow regular Devin (@AdventuresInCP), tweeted a photograph showing him receiving Who’s Who Amongst Grad Students honors. Susanne Brasset (@hazelmist) tweeted out a photo showing her working as a lifeguard.

For my first #WhatCPLooksLike contribution I posted a link to my latest Youtube video.

Honestly I began working on the above video last month prior to the #WhatCPLooksLike campaign. My goal proved to get others to view exercising with cerebral palsy differently. The intensity displayed during the various Rocky montages make them impactful.

By creating “If Rocky Balboa had cerebral palsy…” I desired bringing a similar intensity to exercising with cerebral palsy. Essentially I aimed to dispel any inferiority stigma surrounding exercising with CP, making the video a natural #WhatCPLooksLike fit.

If you have cerebral palsy, do your part to eliminate CP stigmas by sending out some positive #WhatCPLooksLike tweets. Together, we can change the cerebral palsy conversation.

Goal to Walk a Half Marathon

Me after my Inside the Park Home Run walk

Hanging out around Progressive Field’s visitor dugout after completing the Inside the Park Home Run fun walk.

Last weekend I participated in the Inside the Park Home Run event at Progressive Field, which featured a four-mile run and one mile fun walk. Now I completed the latter, marking my first official mile since elementary school. Heading into the event excitement filled me. The course ended on Progressive Field, sacred land to a big Cleveland Indians fan like me. More so though, the event represented progress in my goal to walk a half marathon.

Flashback three plus years ago to March 2011 when I read Someone Like Me: An Unlikely Story of Challenge and Triumph Over Cerebral Palsy by John W. Quinn. Reading about John’s Navy career left me wanting more experiences for my life. Specifically I desired to challenge my body’s limits the way John did every day at sea serving our country.

At the time two friends I saw weekly Alex (RIP) and T.jaye remained hard at work training for a triathlon, leaving me to think “I’ll run, well walk, a marathon.” Further thought led me deeming a half marathon a more reasonable goal. After all, back then I maxed out at four miles on my stationary bike.

With a goal set, I casually began training. Very casually! To build up my endurance I turned to my stationary bike. December 2012 I completed 13 miles on my stationary bike for the first time. Walking 13 miles however proves more difficult due to my gait. Thanks cerebral palsy!

While I started walking more, again I did so very causally. The Inside the Park Home Run fun walk leaves me motivated to work harder. Following my casual mile completion time 28:01 I’m curious what time I could achieve if I give 100%.

Buying a pedometer becomes a priority for me so I can track my distances walked and work down my times to the point where I can complete a 5k within a reasonable mark, my next short-term goal on my journey to a half marathon.

How about you? What long-term goals do you possess? How do you plan to get there? Share via commenting below.

How Do You Think About Your Cerebral Palsy?

Over the past two months a certain word set appears reoccurring in my blogging and vlogging endeavors, “with cerebral palsy (CP).” Just take a look.

“Shoe Shopping with Cerebral Palsy”
“Concert Going with Cerebral Palsy”
“Going to the Ballpark with Cerebral Palsy”

How do you think about your cerebral palsy?

Image courtesy of Master isolated images / FreeDigitalPhotos.net

This catches my attention because when going about these activities I’m not consciously thinking “Oh, I need to keep this in mind because of my CP.” Last year when I saw Tim McGraw at Blossom I didn’t say “I better bring my cane because I have cerebral palsy.”

Instead I think about my specific symptoms. So take the Tim McGraw example I already brought up. I grabbed my cane before heading out to the concert because I thought “I want to be as far down as possible on the lawn seats. I’ll need the cane so I don’t fall going down the hill that is the lawn area.” In said instance I’m focusing on neutralizing my balance issues rather than the label cerebral palsy.

How about another example? When shoe shopping I’m not thinking “Will these shoes work with my CP?” Nope. I’m thinking “Will my inserts fit into these shoes?” I consider my inserts something I need in the same way a cop needs a badge or a waitress needs to balance a tray filled with drinks or food.

Really internally I rarely use the words cerebral palsy. Only when I share my experiences, do I turn to my diagnosis. The term cerebral palsy maintains one valuable function I believe, to communicate. Us in the CP community can communicate with each other and express comparable life experiences. Similarly we can communicate to the able-bodied world and create better CP awareness.

Inside my own head though, I don’t need to communicate about CP because I already know. I recognize my poor balance and other special needs. However, I view those in context with who I am as a whole person. To me I’m Zachary, a talented writer, avid Cleveland Indians fan who happens to walk a little differently and needs a rail to ascend/descend stairs.

If you have cerebral palsy, let me pose a question to you. How often do you use the term cerebral palsy internally within your thoughts? Please answer by commenting below. Thanks!