#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!

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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- 09-13-2017

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.

Long-time #CPChatNow regular Hannah Pike turns the conversation to acting and disabilities sharing an article she recently read.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.

Another long-time #CPChatNow regular Blemi recalls seeing a movie trailer recently which angered her.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.

The #CPChatNow community goes in-depth discussing the Stronger movie trailer.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.

Jen asks #CPChatNow about who has seen the trailer for Jeremy the Dud. 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.

#CPChatNow will hold their September 2017 Google Hanout Thursday, September 21st. 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.

Answer this week's extend-the-conversation question in the "Comments" section, "Has there been a certain movie or TV character who helped you see disability differently?"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

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- 08-30-2017

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.

Participant Hamda dreamed of #CPChatNow community members gathering in-person for a picnic.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.

Shira's comments about being back at school causes Blemi to reflect on her school days.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 asks if anyone in CPChatNow was impacted by Hurricane Harvey.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.

Zachary asks #CPChatNow community members how prepared they are for an emergency.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.

Honestly I only thought about emergency preparedness thanks to a past work assignment. When I worked as Handicap This Productions’ Guest Blog Coordinator I connected them with disability advocate Anita Cameron. Her post became a three-part series detailing step by step how to prepare for an emergency.

Zachary links to Anita Cameron's emergency preparedness guest post for Handicap This Productions..I highly recommend reading. Take a look, “Emergency Preparedness- A Common Sense Measure for the Disability Community.” The read will help you answer the week’s extend-the-conversation question!

This week's extend-the-conversation question asks "What is one thing you can do today to prepare for an emergency?" Reply in the "Comments" section.“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

#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- Accessible Gaming Focus Chat

Representatives for the 501(c)(3) charity AbleGamers joined the cerebral palsy Twitter chat #CPChatNow Wednesday, August 9th, 2017. We  welcomed guests Steven Spohn (COO) and Craig Kaufman (Program Director) as they led us in a focus chat about accessible gaming. Personally for me, #CPChatNow co-host Zachary Fenell, the evening proved extra neat because I actually went to junior high and high school with Craig. However, I am sure you could care less about that! So let us get to what does interest you, accessible gaming!

An open-ended Q & A stimulated the night’s dialogue. I started off the questioning, asking how Steven and Craig became interested in accessible gaming.

Craig explains what interested him in accessible gaming.

Steven Spohn shares how he became interested in accessible gaming.Craig’s accessible gaming interest grew from helping a customer with a TBI (traumatic brain injury). Meanwhile Steven faced issues firsthand dealing with his disability muscular dystrophy. Discussion quickly transitioned to overcoming barriers gamers with cerebral palsy encounter. Steven recommended a particular controller.

Steven often recommends people with CP use an accessible controller called Axis. Almost immediately after Steven suggested using Axis questions regarding system compatibility surfaced. Steven replied in-part “Almost every controller is usable with other systems. The only exception unfortunately is Nintendo.” Additionally Steven mentioned specific system accessible controllers exist too, naming his personal favorite.

One of Steven's favorite accessible controllers is the one-handed Playstation controller. The different controllers Steven named intrigued community regular Alena Brand. She asked if a website exists where you can compare these different controllers. Steven revealed AbleGamers remains at work creating such a resource. Although they worry people will buy controllers that end up not working. A concern AbleGamers minimizes through a no charge exchange policy.

Taking a step back and reflecting, all the various accessible gaming options demonstrates the great strides in accessibility made by the gaming industry. A truth put into context courtesy participant Seth’s gaming memories.  Seth recalls playing Atari with his feet.Seth recalled sitting in his walker playing Atari using his feet! Now, like Craig pointed out, some game developers address accessibility internally via control schemes.

Craig notes games like Mario Kart and Fonza have some cool accessibility options within the control schemes.Also, Craig advised considering PC games. He noted some games you only need a mouse to play.

Craig notes a lot of PC games only require a mouse to play. Chat regular Susanne Brasset provided a testimonial to Craig’s suggestion, fondly recalling the ease she enjoyed playing Everquest.

Susanne and Craig praise Everquest for ease of play and commitment to the disability community.Overall the entire accessible gaming focus chat highlighted many technologies the disability community can use to make gaming a more accessible experience. Therefore what a better extend-the-conversation question to ask than, “What technology do you use to help make gaming an accessible experience for you?”

Reply by commenting in the “Comments” section. Perchance this recap increased your thirst towards exploring accessible gaming options, take Craig up on his offer to answer any questions.

Craig encourages anyone with questions about accessible gaming to contact him.Make sure to tweet Craig any lingering questions you might possess. Plus while along your accessible gaming journey discovering what works best for you, remember the following words Steven tweeted.

If you remember one tweet from #CPChatNow's accessible gaming focus let it be Steven's tweet "You can play anything you want to, with the right combination of technology and stubborness.Whatever serves as that right combination of technology for you, do tell. Answer the extend-the-conversation question.

This week's extend-the-conversation question asks "What technology do you use to help make gaming an accessible experience for you?"“What technology do you use to help make gaming an accessible experience for you?”

Comment below and share!

Until next time,

-Zachary

#CPChatNow Recap- 8-2-2017

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