#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

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#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

#CPChatNow Recap- Writing a Cerebral Palsy Book/Memoir Focus Chat

Writing a cerebral palsy book or memoir remained the subject for #CPChatNow Wednesday, July 26th, 2017. Yours truly, co-host Zachary Fenell, enjoyed the pleasure to lead the focus chat. I prepared seven discussion questions based off my experiences writing and publishing my CP memoir Off Balanced. However I proved not the only author around to chat July 26th.

Author of Someone Like Me: An Unlikely Story of Challenge and Triumph Over Cerebral Palsy John W. Quinn offers to add his insights to #CPChatNow's "Writing a Cerebral Palsy Book/Memoir" focus chat.Yes! Fellow #CPChatNow co-founder and author to the cerebral palsy memoir Someone Like Me: An Unlikely Story of Challenge and Triumph Over Cerebral Palsy John W. Quinn offered to add his insights to the chat! Fitting since his name came up anyways after I asked the first question.

Zachary asks #CPChatNow participants about what CP books stand out to them.Now I prefaced the question, explaining the importance behind knowing similar books already published. That way you can try emulating the attributes which worked for other authors. In her response to the first question regular Shira Sadiky complimented my memoir, calling Off Balanced “relatable.” I noted I felt the same relation reading Someone Like Me. Co-host Devin Axtman also praised John Quinn‘s work.

Devin Axtman shares Someone Like Me sticks out to him.Meanwhile long-time regular Alena Brand named a trait she enjoys in cerebral palsy themed books.

Alena Brand enjoys disability memoirs that maintain positive outlooks.

Opposed to naming specific titles, Alena mentioned enjoying disability memoirs featuring positive vibes. Other books brought up included Geri Jewell’s I’m Walking as Straight as I Can and Bonner Paddock’s One More Step. Perhaps another title stands out to you. Speak up by answering for the week’s extend-the-conversation question “Do any particular cerebral palsy books stand out to you? Why?” Respond in the “Comments” section.

Continuing on, the night’s second question addressed motive behind writing a book.

Zachary Fenell gets #CPChatNow participants to think like a writer and reflect on why you would write a memoir.

Shira raised two potential motivations. Share your experiences others could relate to and/or learn from others. I resonated with the second, commenting I like reading memoirs from those with more severe cerebral palsy. Remarks Alena made also spoke to the learning theme.

Alena aspires to write a memoir in order to have people understand how she lives.Alena plans to write a book to educate others on how she lives. Yet not everyone possessed author aspirations.

Devin doesn't think his life is different enough to write a book.Devin expressed doubt he lives differently enough to warrant writing a book. I pointed out he could target able-bodied readers to show a disability does not make someone so different. Every story contains value. Sometimes you just need to find the right perspective.

The above holds true with regards to the writing process too. Penning a manuscript can seem intimidating. John supplied another way to view the task.

John Quinn didn't think of himself as writing a book but instead he focused simply on telling stories.John recommended concentrating on telling stories opposed to writing a book. He added practical advice to help enter said mindset.

John suggests not worrying about grammar or anything. Rather "Just write. Edit later."A later question transitioned the conversation from the writing process to the publishing and marketing aspect.

Question five transitioned from the writing process to publishing and marketing, asking "How can a blog help transition you to publishing a book?" Jen postulated bloggers could assist spreading word about your book. Truth based off my time marketing Off Balanced! The dialogue proceeded to discuss marketing specifics. Much I learned reading a certain book.

Zachary recommends aspiring authors read Publishing & Marketing Realities for the Emerging Author by Christine Rose.Seriously, most I know about the publishing process I learned reading Publishing and Marketing Realities for the Emerging Author by Christine Rose. For aspiring authors if you take one tidbit away from this recap, make that read Publishing and Marketing Realities for the Emerging Author.

Book lovers, hopefully you too enjoyed reading the “Writing a Cerebral Palsy Memoir/Book” focus chat recap. Perhaps the chat introduced you to a CP book you didn’t know about previously. Or, maybe you can suggest a book not discussed. Remember the extend-the-conversation question.

Answer in the "Comments" section, "Do any particular cerebral palsy books stand out to you? Why?"“Do any particular cerebral palsy books stand out to you? Why?”

Respond by commenting below!

Talk with you later,

-Zachary

#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

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#CPChatNow Recap- 7-12-2017

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.

Zachary answers Susanne's question, sharing he received botox from the ages 12 to 16.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.

Co-host Devin Axtman remembers undergoing botox treatment in fourth and fifth grade.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.

Maysoon Zayid takes time out of her hustle to say hello to CPChatNow.A little later on a newcomer joined in, seeking advice regarding a particular issue.

Newcomer Grace asks #CPChatNow about remedying pain caused by temperature changes.In an effort to best answer Graces question I asked follow-up questions. I wound up recommending a product I like to use, ICYHOT.

Rachel Folly cracks a joke after Zachary recommends to Grace a product to help relieve pain.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!

Zachary explains the "them's the rules" comment to be an inside joke.

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.

Co-host Zachary Fenell, author of the cerebral palsy memoir Off Balanced, will lead a discussion on writing a CP related book/memoir on Wednesday, July 26th, 2017.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.

This week's extend-the-conversation question asks "How do you handle pain caused by changes in temperatures?"“How do you handle pain caused by changes in temperatures?”

Answer below!

-Zachary

#CPChatNow Recap- 7-5-2017

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