#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- 11-22-2017

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- 11-8-2017

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- 9-20-2017

Last week was an eventful week in #CPChatNow as always!  Members discussed searching for their medical records, the return of the TV show Speechless, their high school accommodations, and the importance of self-advocacy.  This is #CPChatNow Co-Host, Devin Axtman taking you along for the ride on this week’s recap.  Buckle up!

The chat started out on a light note as Mindy discussed the difficulty of finding medical records and Blemi shared in the frustration:

Mindy expressed frustration she can't find her medical records. Blemi stated she found her's with a chocolate stain

Next, the chat turned to #CPChatNow’s favorite TV show, Speechless! Speechless returns Wednesday at 8:30 Eastern! Zach shared a fantastic article covering the show and we discussed the director of Speechless saying a goal was to lose the shackles of the “dreaded disability factor”:

Zach and Devin discussing the return of speechless and the director's thoughts

Talk then turned to high school accommodations and how much members were involved in their own accommodations. Blemi mentioned that her small town in Canada just did the bare minimum:

Blemi and Zach discussing high school accommodations in Canada. Blemi said there is no national standard and her small town did the bare minimum

Blemi reported that her school just exempted her from PE and allowed her to simply write papers.  Simply excusing something rather than accommodating for disability is definitely not the best response:

Blemi reported she wrote papers instead of doing PE

Christine and Zach discussed their evolution from being mad at being included in IEP meetings to taking self-advocacy as a point of pride:

Christine and Zach discussing their evolution from being shy to feeling prideful regarding their disability

Omens also discussed the occasional difficulties of self-advocacy, but rejoiced in the good moments when you find an ally that helps you like their stat teacher:

Omens discusses difficulties with self-advocacy and her stat teacher being her ally

This brings us to our Extend-The-Conversation Question: What memorable stories do you have surrounding CP and self-advocacy?  Please share your answer in the comments!

Tweet you later!

Devin An oranage cat in the lower left hand corner with a shadow of a lion. There is white text saying Extend-The-Convrsation and What memorable stories do you have surrounding CP?

#CPChatNow Recap- 9-6-2017

This past week was an eventful week in #CPChatNow as always.  Members discussed hurricanes, new semesters and houses, and difficulties with transportation. This is #CPChatNow Co-Host, Devin Axtman, taking you along for the ride.  All aboard!

First, we would like to share some good news.  Longtime #CPChatNow member, Erin, is OK following Hurricane Irma.  We discussed her hurricane plans last week:

Erin discussing her hurricane plans with caregivers, food, and water.

Perhaps not surprisingly with the time of year, much of #CPChatNow was focused around school.  Omens joined #CPChatNow to discuss fatigue and school accommodations.

Omens discussing her fatigue at school with accommodations such as an extra set of books, unlimited absences, and ability to leave class early

She also talked about her school providing students laptops to take notes.  This is a good example of Universal Design helping everyone:

Omens discuss that she has a laptop to take notes

Zach relived college by sharing his perceived benefits towards living on campus:

Zach and Jen discuss how Zach living on campus allowed him to learn how to avoid conflict

Next, Jen has discussed in previous weeks how she has been adjusting to her new house.  She shared that she has a device that helps turn on ceiling fans and lights, but wondered if there was a similar device for the bathroom:

A picture of a white remote with gray buttons for turning on fans and lights on a table along with a Jen tweet asking if similar devices exist for bathrooms

Finally, Hailey joined #CPChatNow to let us know that she started grad school. However, she shared her frustration with lack of reliable transportation:

Hailey reporting that she has returned to grad school, but shared her frustration with lack of reliable transportation

I will use Hailey’s frustration about transportation for this week’s Extend-The-Conversation Question: What is the worst societal obstacle when it comes to your CP?  Please share your answers in the comments!

Join us every Wednesday at 8 EST on Twitter at #CPChatNow.

Tweet you later-

DevinA black wheelchair in front of gray stairs with blue text on a gray background of the Extend-The-Conversation question. The Multicolor #CPChatNow logo is in the bottom right hand corner

#CPChatNow Recap- 8-23-17

#CPChatNow was bustling as always this past week as members discussed moving, marathon training, and perceptions of disability.  This is #CPChatNow Co-Host, Devin Axtman, taking you along on this week’s ride.

The chat included some members sharing some exciting news in the disability world.  I shared a cool story from Canada about a woman with CP repelling down a skyscraper to raise money for charity:

Next, Dave shared some news about an exoskeleton helping people with CP with movement.  Technology continues to offer exciting advancements for people with disabilities!

Dave tweeting about a freaking amazing exoskeleton. He shares that working out power will be a gamechanger

Jen shared this was the last #CPChatNow in the house she grew up in and her feelings surrounding the move.

Jen discussing her upcoming move and the bittersweet feelings surrounding it

Next Zach talked about how his October 8th marathon was drawing closer and the organizers have agreed to allow him to have an early start as an accommodation for his CP:

Zach discussing his October 8th marathon and the 31 training days to go. He states he has 31 training days left

Finally, talk turned to the perception of disability in society.  This was started by Zach as he stated that he did not like to take off his shoes during gym class because people would ask him about his DAFOs.  Elizabeth jumped in to the discussion with a question that spurred more discussion about the perception of disability in society largely being something that is to be ashamed of.

A discussion of gym class, DAFOs, adulthood, and disability perceptions in society

For our Extend-The-Conversation question this week, I will use the theme of changing perceptions in the transition to adulthood.  What personal perceptions about disability have changed as you entered adulthood?

Tweet you later!

Devin

A sunset with a desert formation on the horizon. The Extend-The-Conversation Question of What Personal Perceptions of Disability Have Changed As You Entered Adulthood? A white #CPChatNow logo on the bottom

#CPChatNow Recap- 7-19-2017

This past week was a lively week in #CPChatNow as always.  Members discussed marathon training, the impacts of road trips on their CP, media portrayals of disability, and the use of CP in their Twitter handle.  This is #CPChatNow Co-Host, Devin Axtman, taking you along for the ride.

#CPChatNow Co-Host, Zachary Fenell, opened the chat with some exciting news, announcing that he is training for a marathon with the help of original #CPChatNow member, John Quinn.

Zach announcing that he is training for a marathon 22 miles per days with John Quinn's help

John Quinn stating that he did the San Diego marahon

Next, talk turned to difficulties members have on roadtrips due to the time spent in the car making their muscles tight.

Members discussing how roadtrips impact their depth perception and muscles

#CPChatNow member, Shira, also talked about the issues she had with the media regularly putting prominence on a person’s disability over other aspects of their story. Members differed on whether it was to grab attention or highlight the increased risk of violence people with CP face.

Members discussing disability use in headlines

Finally, talk turned to the reasons members do or do not use CP in their Twitter handle.  Members discussed how it is part of their life and that they use it to empower others while others did not perceive CP as something that defines them.

Zach and I talking about how I use my CP Twitter handle as a tool to empower others

Kate stating she had it in her handle so others would know when she followed someone. Blake stated he felt inspiration stuck

Now, for some housekeeping announcements. The first is that Co-Host, Zachary Fenell, will be leading a Focus Chat on writing a CP book/memoir on July 26th!

Also, our next Google Hangout will be taking place on July 27th

Now, to our Extend-The-Conversation question.  I am going to play off Shira’s question for this one: What are some of your complaints about disability and the media?  Please share them in the comments.

Tweet you later!

Devin

A street sign behind a clear blue sky with clouds. The sign has arrows saying internet, radio, magazines pointing to the left with television and newspapers pointing to the right. The CPChatNow logo is in white on top of a pink background and the extend the conversation question is also there in white