#CPChatNow Recap- 1-15-2020

This past week in #CPChatNow was bouncing as always. Members talked about what they are reading and what gifts CP has given them. Also, we have a focus chat on 1/22! This is #CPChatNow co-host, Devin Axtman, taking you along for the recap.

First, we have an exciting announcement at #CPChatNow. We will be doing a focus chat with member and former Paralympian, Ayden “The Jet” Jent. You can read Ayden’s bio here.

Zach announces a focus chat on 1/22 with Ayden Jent about the Paralympics

Next, Zach asked members what they are currently reading. Members shared a variety of different books and Chris shared Haben Girma’s memoir, the story of a deafblind woman graduating from Harvard Law School and becoming a lawyer for disability rights.

zach asked what people are currently reading. blemi tweeted Nora & Kettle, chris tweeted she is meaning to read Haben Girma's memoir

I bring up reading because in more exciting news #CPChatNow co-host, Zachary Fenell, is going to release his book, Off Balanced, in paperback! You can buy it now in Kindle form here.

Zach announcing Off Balanced is soon to be available in paperback. There is a picture of him holding up the book

Finally, we move to a great question asked by Blemi. She asked what Cerebral Palsy had given people. Members shared a variety of different positives which illustrates the wide variety of experiences in disability.

blemi asked what cp has given people. zach credits his work ethic to cp and to listen to his body, along with a BS filter. i tweeted I do not get too high or too low.
Daryl Perry tweets CP has made him resilient, robyn tweeted resilience and ability to adapt along grip strength. jen tweeted empathy.

This brings us to our Extend-The-Conversation Question: What do you like about your CP?

an orange, blue, and green #CPChatNow logo in the upper right hand corner, extend-the-conversation question in green with what do you like about your CP? in black. The Facebook like button is in the lower left hand corner.

Please share your answers in the comments and join us for the focus chat on Wednesday, January 22nd at 8 Eastern.

-Devin

#CPChatNow- 1/2/2020

The first #CPChatNow of the new decade was bumping as always. Members discussed what they hoped to accomplish in 2020, projects they are currently working on, and the realities of being an introvert on World Introvert Day. This is #CPChatNow Co-Host, Devin Axtman, taking you along for the ride on this week’s recap.

First, members discussed what they hoped to accomplish in 2020:

Zach asks what members hope to accomplish in 2020. Blemi tweets about paying off her line of credit. Zach tweets about paying off his student loans.
Zach tweets he will be publishing his marathon memoir and he has a title in mind

Zach also asked what word members would use to describe their 2020 on December 31st, 2020 and said he will describe his year as extraordinary:

Zach tweets he will look back on the year and describe it as extraordinary

Finally, January 2nd was apparently World Introvert Day. Zach pointed this out and it sparked a discussion on being an introvert.

Zach points out it is world introvert day and asks if people would describe themselves as an introvert
Blemi tweets she feels she is an introvert and experiences anxiety in social situations
linds tweets she is an extroverted when necessary introvert and she used the example of working at a bakery causing her to need her to be introverted

This leads us to our Extend-The-Conversation Question:

Orange, blue, and green #CPChatNow logo in the upper right hand corner. Extend-the-conversation question in green: Do you consider yourself an introvert? in black. An emoji with blue eyes and a zipper over his mouth.

Thank you for reading and join us each Wednesday at 8 Eastern at #CPChatNow on Twitter.

-Devin

#CPChatNow Recap- 12/18/2019

This past week in #CPChatNow was festive as always. As you might imagine, talk centered largely around the upcoming holidays, but other topics were also discussed. Hop in the sleigh for this week’s #CPChatNow recap led by your Co-Host, Devin Axtman.

First, we have an announcement. #CPChatNow will be changing dates to Thursday for the next two weeks due to the holidays.

Zach announcing the next #CPChatNow is Thursday instead of Wednesday

Kate joined us after graduating nursing school and shared some of her challenges of being a nurse with CP. She shared she would feel very fatigued when coming home from work:

Zach congratulates kate on graduating nursing school. kate shared cp added trouble to starting her job.

Next, not surprisingly talk to turned to the upcoming holidays. Talk turned to cooking for family and what made a kitchen accessible and CP friendly:

zach asks heather what makes a kitchen accessible. she likes prep surfaces where she can sit down and cut-proof gloves. zach tweeted he likes sitting uses knives

Zach then asked if people put up a Christmas tree and if CP impacted their ability to do so:

zach asked if people put up a christmas tree and if CP made things difficult. chris said she does not and heather tweeted she only did if she was hosting. i tweeted we have a small tree, but i need a lot of help with decorating

Finally, Zach asked what people’s favorite Christmas traditions were. People talked of getting together with family and looking at Christmas lights.

zach asked about christmas traditions. he tweeted about christmas eve at grandma's and getting in the car to look at christmas lights. kate tweets about liking christmas eve more than christmas. zach tweeted christmas eve is when his extended family got together

This brings us to our Extend-The-Conversation Question: What is your favorite Christmas tradition? Make sure to share your answers in the comments and join us on Thursday at 8 Eastern at #CPChatNow.

-Devin

#CPChatNow Recap- 12/4/2019

This past week in #CPChatNow was busy as always as members got ready for the holidays, discussed unique friendships, cool parts about #CPChatNow, and their doubts about CP.

The upcoming holidays were of course a topic of conversation. Zach asked whether people took disability into account when giving gifts:

Zach asks whether disability was taking into account when giving gifts. Hannah tweeted her grandma bought her shoes that often wouldn't fit and she had to tell her to stop because they wouldn't fit
Blemi tweeted disability had no impact on her gift giving. Zach said he got a baseball glove, but never did play baseball. I tweeted I was there was paralympics for baseball.

#CPChatNow recently turned 6 years old. Members talked about the coolest part of being a member:

I tweeted that the coolest part of #CPChatNow has been watching people grow up and lives change. Zach tweeted about people graduating high school, Blake and myself graduating college, and Blemi entering a long term relationship
Zach tweeted about the genuine bonds that have formed from #CPChatNow and the support system that has formed

Next, talk turned to the unique relationships that can come from online interactions and Yasmin shared that she has formed relationships from online Paramore clubs:

Yasmin tweets about making friendships through Paramore clubs that have stayed even though the forms have shut down. Zach shares that CP brought #CPChatNow together, but we have other common interests

Finally, I asked members what doubts they had as a result of their CP. It sparked some good conversation:

I ask about people's doubts about their CP. My doubt was about getting married. blemi tweeted she was unsure about holding down a full time job. zach worried about pinning his bib number for his 5k races

This leads us to our Extend-The-Conversation question: What is your biggest doubt about CP and what have you done to overcome it?

Please share your answers in the comments and join us each Wednesday at 8 Eastern on Twitter on #CPChatNow

-Devin

#CPChatNow- 10-30-2019

On the day before Halloween, #CPChatNow was busier than a chainsaw in a haunted house. Members talked about carving pumpkins and Halloween plans, inspiration porn, and naming mobility devices. This is #CPChatNow co-host, Devin Axtman taking you along for the ride on this week’s recap.

First, members discussed their plans for Halloween. Zach dressed up as a professional for Halloween.

Zach discussed dressing up in slacks and a dress shirt instead of his typical t-shirt, polo, or long sleeve shirt
A picture of Zach as a professional- zach in yellow dress shirt, brown tie, and black slacks with a brown belt

Next, I shared a story that has gone viral recently, a mom helping her son with Cerebral Palsy experience the skatepark and proclaimed that was better than inspiration porn

i tweeted the video of the mom helping her kid with cp skate at the skate park. Zach and blemi expressed excitement about the story with me saying it was better than inspiration porn

This led to talk about a common topic with disability, inspiration porn. This discussion was a bit different in that it talked about the definition of inspiration porn and how it fit into taking someone with a disability to prom.

Beau c asks if facebook posts inspiring someone are inspiration porn. I tweeted it depends on the intent of the post, who told the story, if it was actually inspiring
Beau C tweets he does not mind people saying him driving his wheelchair across a major highway is inspiring
blemi tweets to her inspiration porn comes from the media giving someone attention for asking someone to prom and feeling like they need to rescue someone. beau tweets they feel the person being asked to prom is in the moment. blemi tweets she feels the problem is people asking for the recognition

Finally, the talk turned to whether people have named their mobility aids. Zach tweeted he was thinking about naming his cane and Blemi tweeted that she is thinking about naming her canes:

zach asks whether people have named their mobility aids. zach tweeted he was thinking of planters since it reminds him of the cane the peanuts guy has. blemi tweets she has 3 canes and zach suggests she names them as a group

Zach wrote a blog about destigmatizing mobility devices and said he got tired of writing “my cane.” Jeni tweeted about naming her elbow crutch, but not naming her AFOs.

zach said he got tired of writing "my cane" while writing a blog about mobility aids. jeni tweeted she is going to let her niece name her elbow crutch, but she doesn't name her AFOs

This brings us to our Extend-The-Conversation Question: Have you ever named your mobility device? Please share your answer in the comments and join us each Wednesday at 8 Eastern on #CPChatNow.

-Devin

#CPChatNow Recap- 10/16/2019

#CPChatNow was active as always last week. Members discussed things such as what makes someone courageous, how their CP can help them avoid hazards, and the difficulty of asking for help. This is #CPChatNow co-host, Devin Axtman, taking you along for the ride on this week’s recap.

First, Zach asked what it is that makes someone courageous. I shared my opinion that courage is doing something that is needed even if you are scared.

Zach and I discuss what makes somebody courageous. I share it is doing something that is scary, but doing it anyways. Zach shared he felt it was not letting fear stop you.

Next, Zach talked about avoiding tripping at a family clam bake due to being extra conscious of a misplaced step.

Zach tweets he avoided tripping over a step at a clam bake due to being conscious due to CP. Paul tweets he is the same way because of his wheelchair and walking with braces and crutches. Zach tweets he looked for trip hazards at high school reunion.

Next, talked turned to a difficult issue that many people with Cerebral Palsy and disabilities in general face, asking for help. I shared I sometimes don’t ask for help due to the many things I am unable to do and wanting to maximize the things I can do. Zach shared a similar story at the clam bake.

I shared I don't ask for help because there's a lot I can't do and I want to maximize what I can do. Zach shares a scenario of carrying his drink at clam bake and needing to ask for help.

Hannah and Zach tweeted about the feelings surrounding asking for help.

Hannah also tweeted agreement with help sometimes feeling condescending while sometimes she has a sense of appreciation.  She tweeted sometimes it relates to the quality of the relationship and sometimes it's her self consciousness.

Hannah and Zach also tweeted further about the fear of being a bother:

Zach and Hannah tweet about being independent to a fault and the fear of being a bother even if they don't see them that way. Zach tweeted he was nervous about working with the Towpath Marathon. Zach tweets this has helped him build confidence to not be a burden.

I want to go back to Zach’s tweet about the step and the clam bake. I know I have been in situations where my CP spidey sense saved me from a sticky situation that people without CP experienced. This brings us to our Extend-The-Conversation Question: How has CP helped you avoid bad situations able bodied people experienced? Please share your answers in the comments and join us each Wednesday at 8 Eastern on #CPChatNow on Twitter.

Extend-the-conversation question in green. How has CP helped you avoid bad situations able bodied people experienced? below with a stop sign in the bottom right hand corner and the multi-colored #CPChatNow logo in the top right hand corner.

-Devin

#CPChatNow Recap- 9/25/2019

This past week in #CPChatNow was jumping as always. Members discussed things like the perceptions of social media, the perceptions of parents with disabilities and CP, and what the news and society at large gets wrong about CP. This is #CPChatNow Co-Host, Devin Axtman, taking you along for the ride on this week’s recap.

#CPChatNow co-host, Zachary Fenell, wrote a blog post, defending social media while talking about the positive impact of #CPChatNow.

zach writes a blog defending social media and talks about what a positive impact #CPChatNow has had. I share that people like to focus on the negative

Next, the topic of the chat largely turned to society’s perceptions of Cerebral Palsy and what the members wished was different. Zach asked about a common topic in the disability community, news coverage of disability and more specifically CP.

zach asks what people would like to see change about news stories regarding cp. i shared treating us as normal with boring lives. zach shared he sees many stories where he asks why is this news? linds tweeted about focusing on the abilities they do have. zach expressed frustration that the focus is on the cannot

Next, Zach tweeted that he wished news stories focused on what the individual with CP thinks rather than bystanders. Zach feels more people blogging and sharing their experiences will be beneficial.

zach tweets he wishes news stories focus more on individuals with CP rather than bystanders

Zach and I talked about how more direct quotes from the person would be more authentic.

zach feels more direct quotes could diffuse stigmas and an authentic portrayal. i bemoaned that many stories have one perfunctory quote. zach tweets he wonders why even if people use a communication device.

Finally, talk turned to an article Zach shared about an Irish mum with CP using a wheelchair:

zach asked if parents could relate to the article. veronica said no because she was mild and she had no issues caring for her children. dave smith tweets stories like this allow people to escape, tweets about her support and fan base.

I pointed out how it was interesting that the barriers she experienced were attitudinal barriers from the healthcare professionals:

I tweeted about the attitudinal barriers from the healthcare professionals. Zach points out that barriers form attitudes are a lot more difficult to navigate than physical barriers

This brings us to our Extend-The-Conversation Question: What are some attitudinal barriers you have experienced in your life?

Thanks for reading! Join us each Wednesday at 8 Eastern on Twitter at #CPChatNow.

-Devin