#CPChatNow Recap- 09-27-2017

Posted on October 4, 2017 by zacharyfenell

Another month in the live cerebral palsy Twitter chat #CPChatNow’s history came to a close Wednesday, September 27th, 2017. I am original #CPChatNow co-founder and current co-host Zachary Fenell, here with highlights for all. You know what I am talking about, recap time!

Familiar faces returning gave the night a reunion-like feel. First, past participant Timmy Le popped in.

Unfortunately, at the start “everyone” only included Jen and myself. However with time, more individuals started showing up.

My co-host Devin Axtman apologized for his tardiness, citing a tough March! Devin quickly realized his misspeak.

Regular Hannah Pike noted forgetting the month signifies a long month. I jokingly theorized the mix-up related to cerebral palsy awareness initiatives. The United States acknowledges March as CP Awareness Month. Meanwhile an international awareness initiative, World CP Day, remains days away!

A short while later another name from CPChatNow’s past re-surfaced.

Kate found time in her busy nursing school schedule to check in with us at #CPChatNow. Devin expressed admiration towards Kate’s desire to go into nursing. The course load proves challenging in general, let alone with the additional obstacles cerebral palsy may cause.

Potential cerebral palsy caused obstacles also came up regarding interacting with children. Recently becoming an uncle, I possessed curiosity about others with nieces or nephews and how CP impacts their abilities as an aunt or uncle.

Susanne Kate Brasset responded, mentioning kids’ ability to adapt. Sentiments Jocelyn supported, talking about her niece and nephew.

The stories Jocelyn shared about her niece and nephew displayed children’s willingness to learn and their thoughtfulness. Maybe you hold insights helpful to the subject. Keep the conversation going then!

Answer for the week’s extend-the-conversation question, “Have you found cerebral palsy hinders your ability to be an aunt or uncle at all?”

Leave your reply by commenting below. Until next time!

-Zachary

#CPChatNow Recap- 9-20-2017

Posted on September 25, 2017 by devinaxtman

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- 09-13-2017

Posted on September 19, 2017 by zacharyfenell

Disability’s presence on the big and small screen proved a popular topic during the cerebral palsy Twitter chat #CPChatNow Wednesday, September 13th, 2017. Here to provide you some highlights circa the weekly recap, I am co-host Zachary Fenell. So just like you might at the movie theater sit back, relax, and enjoy.

As per our usual, #CPChatNow opened with participants sending each other greetings and pleasantries. Long-time regular Hannah Pike metaphorically called “action,” directing the conversation to the previously mentioned topic.

Personally I found the read thought provoking. You can form your own judgements reading the Deadline piece “Actors with Disabilities Find Little Work in TV, But CBS & FOX Lead the Way in Hiring.” Hannah and I agreed discussing the issue remains important. I pointed out how seeing someone you can identify with on the small screen may boost self-esteem. That leads to today’s extend-the-conversation question.

“Has there been a certain movie or TV character who helped you see disability differently?” Answer in the “Comments” section. Meanwhile you might notice the piece Hannah tweeted exclusively addressed disability on TV. Talk additionally transitioned to movies courtesy another long-time regular, Blemi.

She recalled seeing a movie trailer for the film Stronger and cringing. My co-host Devin Axtman believed he reacted similarly when he saw the trailer. However, upon me finding the trailer and posting he recanted.

Devin explained the trailer differed from what he originally thought. Further dialogue pursued while we tried understanding our differing opinions. Amidst the chatter Devin noted he enjoyed the way the trailer portrays adjusting to disabled life as non-static. All the movie discussion left veteran participant Jen asking about a separate disability related trailer.

We all seemed to find the Jeremy the Dud trailer hilarious. Beyond the movie and TV talk, Devin also announced our September 2017 Google Hangout date.

Every month we hold a video chat via Google Hangouts. For privacy reasons we do not post the Hangout link publicly. If you want to join us, please send us a message through our Facebook fan page. Devin, our co-host Jorge Oteiza, or myself will respond to you.

Mentioning responses, remember to respond to the week’s extend-the-conversation question.

“Has there been a certain movie or TV character who helped you see disability differently?”

Reply below! I hope to speak with you again soon.

-Zachary

#CPChatNow Recap- 9-6-2017

Posted on September 12, 2017 by devinaxtman

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-

Devin A 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- 08-30-2017

Posted on September 6, 2017 by zacharyfenell

During #CPChatNow Wednesday, August 30th, 2017 participants discussed assorted topics. I am co-host Zachary Fenell, here with some highlights. Like usual these come packaged together via the weekly recap.

One characteristic which the recaps seem to showcase entails our community’s ability to empathize with each other. Prior to joining #CPChatNow many never talked to someone else with cerebral palsy before. Chatting with a peer who understands can feel dreamlike. Thanks to regular Hamda, we at #CPChatNow may now credibly boast about our dreamy status.

Hamda shared a dream she enjoyed where our community gathered in-person at a park. Such a gathering would prove absolutely wonderful! Arranging said event in reality though requires navigating multiple logistics.

Our community remains spread out across the United States and internationally too. Plus we possess busy schedules, especially since school recently started back up for our young adults. Back to school actually generated much dialogue August 30th.

Community regular Shira Sadiky mentioned starting back at school earlier that day. This caused Blemi to reflect on her school years. Their conversation expanded with other participants also reminiscing. Eventually the chatter turned to more serious matters, the devastation Hurricane Harvey caused.

Susanne Kate Brasset asked if Hurricane Harvey impacted anyone in our community. Thankfully nobody experienced direct consequences. However both Susanne and co-host Devin Axtman know friends and family directly effected.

Personally I saw the topic as an opportunity to raise an important subject, emergency preparedness.

Responses to the emergency preparedness question stood mixed. Susanne’s time with the Girl Scouts left her more than ready in case an emergency surfaces. Meanwhile Devin admitted to never contemplating the matter. I am willing to wager most people’s answers would resemble Devin’s reply. Actually, why wager? Instead answer for the week’s extend-the-conversation question:

“What is one thing you can do today to prepare for an emergency?”

Respond below in the “Comments.” Thanks for reading. Remember you can partake in #CPChatNow every Wednesday on Twitter starting at 8pm ET. I hope to tweet you soon.

Sincerely,

Zachary

#CPChatNow Recap- 8-23-17

Posted on August 29, 2017 by devinaxtman

#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- 8-2-2017

Posted on August 6, 2017 by devinaxtman

This past week in #CPChatNow brought up varied topics as always. Members discussed issues with healthcare professionals, breaking in athletic shoes, and our Focus Chat next week on accessible gaming with AbleGamers! This is #CPChatNow Co-Host, Devin Axtman, taking you along for the ride.

A common theme this week was discussion of member’s distrust of healthcare professionals. Rachel expressed frustration that medical professionals do not want to discuss Cerebral Palsy, but they are happy to treat the symptoms of CP.

Devin tweets about how doctors blame CP for stuff while Rachel tweets that professionals rarely discuss her CP and just treat symptoms

Rachel further expressed her frustrations with medical professionals predictions being wrong about her abilities.

Rachel expressing frustration about ways medical experts have been wrong about her ability

Next, talk turned to stupid questions asked by doctors when Hannah chimed in with a stunning question from a doctor.

Zach tweeted about stupid questions asked by your doctor. Hannah said she had a doctor ask if she still had CP. Rachel pointed out this is like a Speechless scene

Zach also expressed frustration about breaking in his new athletic shoes. Rachel pointed out this has been issue for her, but she has gotten relief from inverts and a new masseuse.

Zach expressed frustration it has taken awhile to break in new athletic shoes. Rachel pointed out this takes 6 weeks, but she has gotten relief from inverts and a new massuese

Members discussed issues they experienced with extreme temperatures. Zach also shared he set a personal best in a 5K as he works towards completing a full marathon.

Blemi then discussed difficulties her body experiences during extreme cold. Rachel shared she also has difficulties with extreme cold. Zach shared some happy news that he had just set his personal best in a 5K.

Finally, #CPChatNow is incredibly excited to announce that our next Focus Chat will be next Wednesday, August 9th, with the folks behind AbleGamers. AbleGamers is a 501(C)(3) nonprofit public charity that aims to improve the overall quality of life for those with disabilities through the power of video games. Craig also reached out to Rachel after she expressed frustration surrounding video games.

Zach announced the AbleGamers Focus Chat for August 9th, Rachel expressed frustration with video games, Craig from AbleGamers reached out to her to offer assistance.

This brings us to our Extend-The-Conversation Question and it ties in to next week’s Focus Chat: What are difficulties you have experienced surrounding CP and gaming? Please share your answers in the comments. Also, don’t forgot to join us for our Focus Chat next week! A black background with the extend-the-conversation question What are difficulties you have experienced surrounding CP and gaming? in gray text with gaming in all caps. #CPChatNow white logo in bottom left hand corner

Tweet you later!

-Devin

#CPChatNow Recap- 7-19-2017

Posted on July 25, 2017 by devinaxtman

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.

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- 7-12-2017

Posted on July 19, 2017 by zacharyfenell

Wednesday, July 12th, 2017 saw participants gather for our typical Wednesday night #CPChatNow Twitter chat. Considering context though, you could define “typical” with the word extraordinary. At least that remains my biased opinion as #CPChatNow co-host Zachary Fenell.

The communal atmosphere and ability to learn from one another all while enjoying ourselves makes our Twitter chat standout. Do you want proof the above happens? Keep reading!

Susanne Kate Brasset started getting the dialogue going by asking others about their experiences receiving botox injections. A topic on Susanne’s mind given her next botox treatment loomed.

I shared I underwent botox treatment between the ages 12 and 16. However, we discontinued because the results did not seem worth the hassle. Co-host Devin Axtman also discussed undergoing botox treatment.

Devin explained the botox helped him feel a lot looser but to get the injections doctors needed to put him under general anesthesia. While the botox discussion continued, our resident celebrity Maysoon Zayid made time in her busy schedule to stop in and say hello.

A little later on a newcomer joined in, seeking advice regarding a particular issue.

In an effort to best answer Grace‘s question I asked follow-up questions. I wound up recommending a product I like to use, ICYHOT.

Rachel Folly sought the opportunity to use her “Them’s the rules” line. Comments I explained to Grace represented an inside joke. Not actual rules!

Through continuing dialogue we learned Grace discovered us thanks to Maysoon’s earlier tweets. Anyways, shall we get serious and re-visit Grace’s question? Answer for the week’s extend-the-conversation question, “How do you handle pain caused by changes in temperatures?” Leave your reply in the “Comments” section.

Other noteworthy points coming out our July 12th, 2017 Twitter chat related to our upcoming monthly events. First co-host Jorge Otezia announced the July 2017 focus chat details.

I am very much looking forward to our discussion Wednesday, July 26th. Hopefully the aspiring authors within our group will find the chat beneficial. Additionally, remember the same week, on Thursday, July 27th, 2017 we will hold our monthly Google Hangout video chat. To get added to the invite list contact Devin, Jorge, or myself.

While a big week next week, let us not allow the anticipation to overshadow this week’s chat. The fun begins at 8pm ET! Before then answer the extend-the-conversation question.

“How do you handle pain caused by changes in temperatures?”

Answer below!

-Zachary

#CPChatNow Recap- 7-5-2017

Posted on July 11, 2017 by devinaxtman

This past week was a lively week on #CPChatNow as always. Members discussed finding shoes that fit them, working on a disability pride march, important issues that face the disability community, and invasive questions they have been asked about their CP. This is #CPChatNow Co-Host, Devin, taking you along for the ride. Enjoy!

This chat started out with some happy news as Hannah noted she found some sandals she can walk in:

Hannah tweets that she found sandals she can walk in and bought both shoes. There is a picture of her foot in a pink sandal. Zach replies that it is the little things in life while Hannah responds she is just happy to find shoes she can walk in

Next, Rachel noted that she is working on translating the Chicago Disability Pride March brochure into Spanish. We love to see positive change at #CPChatNow!

Rachel noting she may be working on translating the Chicago Disability March brochure into Spanish or at least volunteering for the march

Then, talk turned to Gabriella Burman’s question of, “What is the most important issue keeping people with disabilities from living a full and independent life?” I started out by saying that I felt the most important issue is a society that is not set up for us. Transportation and attitude also came up.

There was also a discussion of whether attitude is the most important factor when it comes to accessibility. I pointed out that if you don’t give someone a chance, do all of the other variables matter?

There was also a discussion of whether attitude is the most important factor when it comes to accessibility. I pointed out that if you don't give someone a chance, do all of the other variables matter?

Finally, talk turned to what is the most invasive question anyone has been asked about their CP.

Zach asks what the most invasive question people have been asked is. Suzanne reports being yelled at an airport for using the accessible stall. I pointed out that I get questions about why I am walking if I use my wheelchair

Hannah “won” the question (although, I don’t know if there are any winners here) by tweeting that she was asked how she used the restroom by herself.

Hannah tweets that she was asking how she uses a public restroom by herself. Zach says that it is better than being patronizing. Hannah tweeted that she just ignored the question

For our Extend-The-Conversation question, I would like to go back to Zach’s tweet about Hannah’s shoes being an example of “the little things” in life. What are some of the little things you take pleasure in regarding CP?

Be sure to join us every Wednesday at 8 EST on #CPChatNow on Twitter!

Tweet you later!

Devin White text in front of a background of waves crashing onto rocks: What are some of the little things you take pleasure in regarding CP? White #CPChatNow logo below question

#CPChatNow

Online community for those with cerebral palsy!

Category Archives: Weekly Recaps

#CPChatNow Recap- 09-27-2017

#CPChatNow Recap- 9-20-2017

#CPChatNow Recap- 09-13-2017

#CPChatNow Recap- 9-6-2017

#CPChatNow Recap- 08-30-2017

#CPChatNow Recap- 8-23-17

#CPChatNow Recap- 8-2-2017

#CPChatNow Recap- 7-19-2017

#CPChatNow Recap- 7-12-2017

#CPChatNow Recap- 7-5-2017