#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?

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#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

#CPChatNow Recap- 6-7-2017

This week was an eventful week as always in #CPChatNow Land.  Members discussed a wide range of things from getting new leg braces, to doing ballet as kids, to underrepresentation in the Cerebral Palsy community.  This is Devin Axtman taking you along for this week’s ride.

First of all, I am humbled and honored to serve as full time Co-Host/Engineer for #CPChatNow.  Blake and Zach will both be staying on as co-hosts and contributing:

Zach announcing I will serve as a co-host

I started the conversation by discussing how I am in the process of getting new leg braces.  Christine and I bonded over our mutual hatred of the casting saw:

Me discussing getting new leg braces and Christine discussing her hatred of the casting saw

Next, Susanne talked about how she did ballet for 15 years and it helped stretch her calves and ankles. This is a great example of non-traditional methods being therapy for CP:

Susanne talks about how doing ballet for 15 years stretched her calves and ankles.

Talk shifted to public figures with CP and what complications are underrepresented in conversations:

Next, talk turned to issues that people with speech issues, a potential complication of CP, face:

Members shared their issues with difficulties with speech and their history with speech therapy.  On a positive note, Susanne shared that her speech issues landed her an audition:

Now, we’ll end the recap on some good news.  The person who attacked a man with CP at a gas station was arrested this week. However, Rachel pointed out that there is still work to do.

Finally, our next Google Hangout will be on Thursday, June 29th:

This brings us to our Extend-The-Conversation Question: What are some complications from CP that are underrepresented? Please share your answers in the comments. Extend-The-Conversation graphic: What are some complications from CP that are underrepresented?

 

#CPChatNow Recap- 5-10-2017

This week’s #CPChatNow Twitter chat was a ride ranging conversation on current events in community member’s lives and topics unique to the disability community.  This is your Interim Co-Host, Devin Axtman, and I will be taking you on this week’s recap journey.

#CPChatNow regular, Dave Smith, started the conversation by posting a video about the Alinker, a walk-assisted device.  Members unanimously agreed it would be beneficial and preferable to using a walker:

#CPChatNow members Kate and Jocelyn returned and debated the proper pronunciation of Cerebral Palsy along with Rachel:

Kate also sparked much engaging conversation about having mild CP and not feeling like she fits in within the disability community:

Members also spoke of their fondness and desire to learn American Sign Language (ASL):

Finally, #CPChatNow Co-Host, Zachary Fenell, ended the chat on a happy note by announcing that he had recently taken a part time job at the local library:

Also, please join us on MAY 25th for our monthly Google Hangout (tip of the cap to Zach for backing up my errant throw):

Finally, this brings us to our Extend-The-Conversation question: Where are some areas the disability community can improve its inclusion of others?  Please share your answer in the comments and be sure to join us on Twitter every Wednesday at 8 Eastern Time. 

 

#CPChatNow Recap- A Serious Chat About Comedy

This week brought up one of our best focus chats yet, as #CPChatNow regular, Susanne Kate Jones, led a serious chat about comedy.  I’m your #CPChatNow Interim Co-Host, Devin Axtman, taking you along for the ride. So, what are you waiting for?  Hop aboard and let’s get geauxing!

Susanne first introduced herself by noting her comedy experience:

Susane describing her degrees from LSU

Susanne discussing the comedy classes she has taken

Susanne came up with some outstanding questions.  Her first question asked about people’s favorite comedian and comedy movie or TV show:

Alena also specifically brought up how the ABC show Speechless is her favorite because it highlights disability:

Susanne next asked about the importance of comedy and humor.  Members chimed in with their thoughts:

Susanne next asked if members felt there were any topics that are comedically off limits:

Members chimed in with various different topics they felt were comedically off limits:

Ultimately, we agreed it depends on the situation:

Next, Susanne asked if comedy could be used to teach about disability related issues. Members largely agreed that it can allow others to relate to CP easier.

 

Next, Susanne asked why members thought there were so many successful comics with CP. Members largely agreed that CP gives comics a unique story that comics can tell.  Members also spoke of comedy as a coping mechanism:

Finally, Susanne asked about ways to make comedy more accessible. Members discussed various ways, focusing on physical and digital access.

This brings us to our Extend-The-Conversation Question, “What role does humor or comedy play in your daily life with CP?” Extend the conversation question with #CPChatNow Logo

Please leave your answer in the comments and thanks for reading!