#CPChatNow Recap- Reflecting Back and Looking Forward Focus Chat

This past week in #CPChatNow was especially lively as we celebrated #CPChatNow’s 4th birthday!  We decided to do a focus chat with various questions focusing on changes in member’s lives, questions about #CPChatNow, and a discussion about #CPChatNow’s future.  This is #CPChatNow Co-Host, Devin Axtman, taking you along on this special recap.

The first question focused on what has changed in members’ lives in the last four years.  Members shared many things, but it was interesting that many members had common changes:

Zach asking what has changed over the past 4 years. I answered with some changes including a master's degree, girlfriend

Blemi discussing a new job and boyfriend when talking about changes. Seth discussing cruises and burying his grandpa

The next question was about how members had heard about #CPChatNow.  Members shared various things such as discovering it on their timeline to seeing CP celebrities like John Quinn tweet about it:

Hannah tweeting that #CPChatNow showed up on her timeline

Me stating that I stumbled on #CPChatNow in a search, but I saw John Quinn tweet it

Zach also shared the story of the creation of #CPChatNow.  A collaboration between John Quinn and @HandicapThis.

Zach sharing story of #CPChatNow's creation

The next question related to specific questions or conversations that have stuck out to members.  Hannah shared the long running #CPChatNow joke of the story when someone asked if her CP was caused by getting ran over by a train:

Hannah tweeting the train conversation is her favorite #CPChatNow conversation

Jen tweeted about the focus chat with @The_CP_Swagger and Hunter Gandee who has made national news by carrying his brother with CP on his back to raise awareness:

Jen tweeting her favorite chat was with CP Swagger

Zach chimed in with the exercise chat led by Erin while I said the dating or accessible gaming ones:

Zach and Devin discussing their favorite conversations

Members also mentioned liking that the conversations in #CPChatNow tend to happen organically and do not feel forced:

Members discussing the joy that CPChatNow conversations tend to happen organically

Finally, the last question in the Focus Chat was regarding who members would like to see be a guest on a future focus chat.  Members were consistent in requesting Micah Fowler of Speechless fame.

Jen tweeting that she would like to see Micah Fowler on a future chat

Now this brings us to our next Extend-The-Conversation question and I will use #CPChatNow’s fourth birthday as inspiration.  What has changed for you in the past four years and what would you like to see in the next four?

This week's extend-the-conversation questions asks "What has changed for you in the past four years and what would you like to see in the next four?"

Answer in the “Comments” section.

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#CPChatNow Recap- 11-29-2017

Assorted conversations occurred Wednesday, November 29th, 2017 during the cerebral palsy Twitter chat #CPChatNow. I am co-host Zachary Fenell, here to summarize the dialogue into your weekly recap. Tone throughout the night varied from empathetic and humorous to more serious.

Rachel shares she almost fell earlier in the day without a sense of what happened.Both co-host Devin and I empathized with Rachel when she shared she almost fell earlier in the day. Rachel described the situation tweeting in-part, “don’t even have a sense of what happened… my muscles just decided to go on strike.”

Her description made me recall the second fall I endured amidst my marathon Sunday, October 8th, 2017. Meanwhile Devin noted experiencing similar scenarios. For him he ends up going backwards. Devin and I additionally each answered a question raised by participant Seth.

Seth asks if anyone knows a republican with cerebral palsy.Curiosity sparked Seth to ask if anyone knows a republican with CP. I mentioned seeing social media posts containing republican ideals published by others with CP. However, I added not asking about party affiliation. Close-minded attitudes make political discourse difficult to enjoy in my opinion. Devin agreed, expressing indifference towards the two main parties. Furthermore Devin voiced frustration regarding another subject.

Devin is tired of a society where individuals with disabilities are never seen and even worse, killed in an act of "mercy."Retweeting a news story emerging too often, Devin vocalized disgust. The piece centers around an adult woman with a disability who some “never seen” and her parents. The father killed the mom and daughter prior to taking his own life. Actions certain people in society reacted to with sympathy. A reaction tiring to Devin.

Similarly, I found the news piece sickening. I theorized such instances happen due to the misconception people with disabilities cannot live valuable lives. #CPChatNow regular Shira Sadiky chimed in, saying these unfortunate attitudes motivate her. She wants to prove those people wrong!

Fellow #CPChatNow regular Susanne Kate Brasset also provided her insight.

Susanne considers news stories like the one Devin shared as a communications tool to get word out about what people with disabilities can do.Susanne viewed the scenario partially a communication issue. She sees multiple people with disabilities posting online unfamiliar with available resources. Within her comments Susanne hit upon key advice. “You never know unless you ask.”

Later in the evening chatter returned to advice when I tweeted an article I read previously in the day.

Zachary asks #CPChatNow what advice they would give their younger selves.Building off the article I tweeted, I asked “What advice would you give your younger self?” Long-time chat regular Blemi would advise her younger self to “Keep on keeping on. Life does get better.”

Seth additionally encouraged with his wisdom. “Living on your own isn’t as scary as you think.” Your turn! Ponder your life lessons and answer for the week’s extend-the-conversation question, “What advice would you give your younger self?”

This week's extend-the-conversation question asks "What advice would you give your younger self?"

Answer the week’s extend-the-conversation question with a comment in the “Comments” section.

Leave a comment in the “Comments” section below to respond. No reason the conversation must stop after Wednesday. Keep the dialogue going!

Plus consider following our Facebook fan page. The page shares recent cerebral palsy related stories and will keep you updated on our latest announcements.

Until next time!

-Zachary

 

 

#CPChatNow Recap- 11-22-2017

The chat before Thanksgiving was very eventful as members talked about moving their impacted side(s), difficulty with insurance companies, inaccessible houses during the holidays, and more.  This is #CPChatNow Co-Host, Devin Axtman, and I will be taking you along for this week’s recap.

We begin this week’s recap with Rachel and I discussing having to purposely focus more on moving our impacted side(s):

Rachel and I discussion about movement on our impacted side

Next, Chris and Zach discussed the difficulties of dealing with insurance companies and the added frustration that comes with knowing the proposed treatment would save money in the long run:

Chris discussing frustration with getting her asthma treatments covered

Finally, much of the talk in the chat was surrounding member’s holiday plans.  Talk soon turned to accessibility issues members had while visiting family and strategies they had to deal with them:

Paul and Zach also discussed family member’s houses with stairs and sliding on their butts to go down them:

Paul and Zach discussing sliding down the stairs on their butts

This brings to our Extend-The-Conversation Question: What are some out of the box solutions you have used in inaccessible situations?  Please share your answers in the comments and join us every Wednesday at 8 Eastern at #CPChatNow on Twitter.

The extend-the-conversation question with a picture of a box with a green arrow in the center

-Tweet you later

Devin

 

#CPChatNow Recap- 11-15-2017

Participants in the live cerebral palsy Twitter chat #CPChatNow enjoyed thought provoking conversation Wednesday, November 15th, 2017. I am co-host Zachary Fenell, here to capture the riveting dialogue and allow you to further contemplate the various topics discussed. My co-host Devin Axtman provoked thought early as Blemi and I discussed wait times at the doctor.

While Blemi and Zachary complain about untimely doctors, Devin offers helpful perspective.While Blemi and I joked about untimely doctors, Devin supplied helpful advice and perspective. He plans at least a 30-minute wait into his schedule when he sees the doctor. When waits grow irritatingly long, Devin reminds himself not everyone possesses access to such specialists. What a great mindset!

Dreams emerged another popular topic during the chat November 15th. Seth wondered why so many guys with CP watch wrestling. In my response I suggested a possible “sub-conscious urge to be as muscular and strong.” That idea led Linds to transition the topic to dreams.

Linds asked if anyone in #CPChatNow is ever able-bodied in their dreams. Linds asked if anyone else ends up in their dreams either able-bodied or possessing super strength. Both Seth and I never experienced those abilities in our dreams, but what about you? Answer for the week’s extend-the-conversation question, “Have you ever been completely able-bodied in your dreams?”  Leave your response in the “Comments” section!

Moving on Shira Sadiky joined in the chat expressing her dislike for the term “special needs.” People within our community held passionate opinions regarding the term.

Those in the #CPChatNow community give their opinions on the term "special needs."Devin theorized the term “special needs” remains people’s efforts to make disability “cute.” Shira agreed, suggesting the cuter phrasing enable those without a disability to feel better when thinking about us with disabilities. Talking out the subject left Shira frustrated, asking “They don’t even experience it so why do they get to decide?”

Empathizing Devin referenced the disability rights movement rally cry “Nothing about us without us.” The fact people make decisions regarding disabilities without talking to those with disabilities sickens Shira. I helped place context to the situation explaining how only decades ago many thought death offers a better fate than living with a disability. Said point hit home with Blemi.

Blemi remembers as a little girl telling her father she wished she was never born.Blemi recalled as a little girl telling her father she wished she was never born. Remembering the comment saddened Blemi. Shira and I however understood the difficulty and why little girl Blemi would say what she said.

Meanwhile Devin analyzed the potential reasoning behind the “Better dead than living with a disability” mentality.

Devin speculates an assumption of incompetence as the reason for the attitude "better dead than living with a disability."Assumptions people with disabilities cannot do many tasks Devin believes powers the “better dead than living with a disability” attitude. Any incompetent assumptions get destroyed by looking at our #CPChatNow recap archives. Our community showcases thriving possibilities and will continue doing so. That leads to a couple community specific discussions. First, Devin announced our November 2017 Google Hangout date.

#CPChatNow will hold their November 2017 Google Hangout Thursday, November 30th at 8pm ET.Hopefully you join us for our video chat via Google Hangouts Thursday, November 30th, 2017. We do not share the link publicly for privacy reasons. So if you wish to join us, message the #CPChatNow Facebook fan page.

Secondly, #CPChatNow also stands ready to start planning a new shirt sale. Initial steps involves collecting design ideas. Time to speak up on what you want to see in the next #CPChatNow gear.

#CPChatNow co-hosts want your design ideas for the next #CPChatNow shirt.Think like Shira and let us co-hosts Devin, Jorge Otezia, and I know your design ideas for the next #CPChatNow shirt. Before sharing your shirt ideas with us though, remember the extend-the-conversation question awaiting your response.

Answer in the "Comments" section "Have you ever been completely able-bodied in your dreams?"“Have you ever been completely able-bodied in your dreams?”

Respond below in the “Comments.” If yes, please give some details.

Until next time,

-Zachary

 

#CPChatNow Recap- 11-8-2017

This past week’s #CPChatNow Twitter chat was eventful as always.  Members discussed fixing accessibility problems at work, the helpfulness of blogging, and the independence that something like a parking tag can bring.

A continual theme on #CPChatNow has been working with employers on addressing accessibility related issues.  Zach relayed a story of working with his employer to address a folding mat over a carpet:

Zach relaying a story of working with his employer to correct a folding carpet mat

Next, Lindsey and Zach discussed the importance of blogging in their lives. Lindsey and Zach discussed how blogging is a way to express their thoughts to the world:

Lindsey and Zach discussed how blogging is a way to express their thoughts to the world

Zach and Lindsey also discussed the difficulty of caring what others think:

Zach and Lindsey discussing the difficulty of getting over caring what others think

Next, talked turned to the mixed feelings that using an aid such as a wheelchair, cane, or accessible parking placard can bring:

Zach, Lindsey, and Devin talking about the mixed feelings that come with using an aid that increases independence

Zach and Veronica discussed the assistance that having an accessible parking placard can provide when navigating the giant falling hazards that are known as parking lots:

Zach and Veronica discussing the aid that an accessible parking placard can be when navigating parking lots and the benefits of living in Arizona

This brings us to our Extend-The-Conversation question: What tools related to your CP give you mixed feelings?

Please share your answer in the comments!

Tweet you later

-Devin

#CPChatNow Recap- 11-01-2017

Another Wednesday passed Wednesday, November 1st, 2017 and with Wednesday comes another cerebral palsy Twitter chat. Obviously I, co-host Zachary Fenell, am referencing our beloved #CPChatNow. For nearly four years our chat has given us in the cerebral palsy community reason to anticipate Hump Day.

The very first #CPChatNow happened Tuesday, December 3rd, 2013. I along with fellow authors John W. Quinn (Someone Like Me: An Unlikely Story of Challenge and Triumph Over Cerebral Palsy) and Handicap This‘ Tim Wambach (How We Roll) joined forces to co-host the special chat. At the time we did not plan to make the chat a weekly deal. However, YOUR feedback quickly turned #CPChatNow into a weekly occurrence.

Truthfully, I felt honored putting my name alongside Tim and John’s as #CPChatNow co-founders. Both individuals I came to know about and respect through my set “cerebral palsy” Google Alerts. Connecting personally with them each started on Twitter. An opportunity no longer available with one.

Zachary shares news that #CPChatNow original co-host John W. Quinn has left Twitter.John decided to leave Twitter due to increased negativity on the platform. As I explained to regular Shira Sadiky the news saddened me because others will not enjoy the same opportunity I enjoyed to connect with John. Nevertheless those around in the early days will surely recall John preaching not to dwell on problems but find solutions. That led me to ask a question.

Zachary and Jen discuss staying positive and tuning out negative forces.Long-time regular Jen looked forward to learning how others stay positive and tune out negative forces. I offered up my tips. Ignore people trolling. Avoid Twitter during highly politicized events. Also hide aggressive and insulting users from your feed so you do not see their tweets.

Your turn now! Answer for the week’s extend-the-conversation question “How do you stay positive and tune out negative forces?”

The week's extend-the-conversation question asks, "How do you stay positive and tune out negative forces?" Reply in the "Comments" section.Respond in the “Comments” section below! Then remember to join us tonight on Twitter at 8pm ET! Twitter recently expanded character limits to 280 characters. That should allow our conversations to thrive more!

Tweet you then,

Zachary

#CPChatNow Recap- 10-25-2017

#CPChatNow had a lively chat as always this past Wednesday. Members talked about changing job duties, football teams letting teens with CP score, and whether intended good deeds are necessary and appreciated. I am your Co-Host, Devin Axtman, and I will be taking you along on the ride for this week’s recap.  Buckle up!

We’ll start this recap with Chris discussing her feelings surrounding changing job duties and the disability accommodation process at work:

Chris discussing recently amended job duties due to illness

Next, talk turned to a recent story out of New Jersey where a 7th grader with CP scored a touchdown when the other team kneeled.  Zach and Timmy both bemoaned the other team’s lack of effort:

Zach and Timmy bemoaning the lack of effort on a 7th grader with CP's touchdown

However, Zach and I also brought up Reese’s feelings in the matter:

Zach and Devin discussing how Reese's feelings were the number 1 priority in the touchdown

Finally, talk turned to helpful good deeds that people think they are doing related to your CP, but that are actually patronizing and harmful.  Zach started the conversation by recalling a story about someone repeatedly asking if he was alright while walking:

Zach asks about patronizing good deeds and discusses a story about someone repeatedly asking if he is OK

Zach and I discussed people pushing me in my wheelchair without me asking, something that happens frequently:

Zach and I discussing people pushing me in my wheelchair without asking while joking that all I have to do is avoid hills

Omens discussed frustration regarding being escorted to the school office due to dizziness and feeling her wishes were not totally respected.

Omens discussing her frustration about being escorted to the office after experiencing dizziness

This brings us to our Extend-The-Conversation Question: What are some not helpful things people do to help with your CP?  Please share your answers in the comments.

Tweet you later!

-Devin
A cream colored notebook paper background. Black text that says: What are some not helpful things people do to help with your CP? A red ribbon with red text that says NOT HELPFUL is in the middle of the page while the multi-colored #CPChatNow logo is in the bottom left hand corner