#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

#CPChatNow Recap- 9/11/2019

This past week in #CPChatNow was animated as always. Members talked about things like getting a bad night’s sleep, their routine in the morning, and the age old debate of audio books versus physical books.

Members first talked about something that plagues everyone from time to time, a bad night’s sleep and how long it takes them to recover:

zach asks how long members need to recover from a bad night's sleep. chris said it takes forever, blemi said 2 or 3 days and she needs 7 hours of sleep with 8 or 9 being better, zach said he is best with 8 hours of sleep and i tweeted i feel it the next day with 6.5-7 hours being optimal

Next, Zach asked members if they have to wake up earlier to get ready because of CP:

zach asked if members have to wake up early in the morning to get ready due to disability, I said no, but it does take me 5 minutes to put my shoes and orthotics on, zach said he saves time by keeping his shoes tied

I also recommended a book that I am listening to, Strangers Assume My Girlfriend Is My Nurse. Zach and I discussed what I do when I listen to audiobooks:

I recommend the book Strangers Assume My Girlfriend is My Nurse by Shane Burcaw. Zach asked if I multi-task while listening and I shared I do it on my train commute

Next, members engaged in the new school age old debate, physical books or audio books. Zach discussed audiobooks with Blemi who prefers physical books, but does like to use her e-reader.

Zach discussed audiobooks with Blemi who prefers physical books, but does like to use her e-reader.

Hannah and Dave Smith also weighed in on the audiobook debate with Hannah tweeting that she likes physical books because she can physically turn the pages and Dave tweeting it depends on the thing he is reading:

The conversation about audio books versus paper books continued. Hannah said she likes physical books, but they are a chore with her vision and she often gets distracted in audio books.Dave smith said he likes physical books for favorite authors and ebooks for reading and textbooks.

This brings us to our Extend-The-Conversation Question. I will use Zach’s question and put my own twist on it: Do you have to adjust your routine due to disability? Please share your answers in the comments and join us each Wednesday at 8 Eastern on #CPChatNow.

The Extend-The-Conversation Question: Do you have to adjust your routine due to disability? with Extend-The-Conversation in green above the question, the multicolored #CPChatNow logo, a black alarm clock showing 10:10

Please join us each Wednesday at 8 Eastern on Twitter at #CPChatNow

-Devin

#CPChatNow Recap- 8-28-2019

This past week in #CPChatNow was jumping as always. Members talked about topics like submitting their first manuscript, snapping their fingers, and the bane of many people with CP’s existence, shoes. This is #CPChatNow Co-Host, Devin Axtman, taking you along for the ride on this week’s recap.

First, I would like to recognize #CPChatNow’s resident scientist, Timmy. Timmy is starting his PhD program and submitted his first 1st author manuscript. Good luck this year Timmy!

Zach and Timmy tweet about Timmy's first 1st author manuscript. A paper that condenses his master's thesis.

Next, Zach asked if members are able to snap their fingers, something that is difficult for many people with CP.

Blemi tweets she is able to snap her fingers

Talk then turned to whether members could do things like the Vulcan Salute, sing, and play an instrument.

I tweet I cannot snap or do the vulcan salute. Grace tweeted she cannot do the salute or whistle a melody while she can sing. Zach tweets he cannot sing, snap, or whistle. Grace tweets she has practice but can't play an instrument. Zach tweets practice is important to doing something well.

Next, talk turned to how long member’s shoes last them. Keens and Docs were popular durable shoes. Many members expressed that shoes did not last them long.

Zach asked how long it took member's shoes to wear down. Chris tweeted it depends on the construction, but she has luck with keens. Blemi mentions docs as well. Heather tweets her shoes wear down at different times.
Grace tweets her shoes can wear down in weeks or month, but it can be a year. She tweets her left shoe can wear out faster.

Finally, Zach mentioned a CP life hack he used at a recent wedding, wearing black tennis shoes rather than dress shoes.

zach tweets that he wears black tennis shoes instead of dress shoes as a CP life hack. Blemi tweets zach is lucky he is a guy. Zach tweets he would be a mess in heels

Zach’s tweet about tennis shoes inspires our Extend-The-Conversation Question: What are your CP life hacks? Share your answers in the comments!

Extend-the-conversation question graphic. An easy button with what are your CP life hacks? and the white #CPChatNow logo

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

-Devin

#CPChatNow Recap- 8-14-2019

This past week in #CPChatNow was buzzing as always! Members talked about various things such as therapy they enjoyed over the years, learning to fall, and disaster preparedness with a disability. This is #CPChatNow co-host, Devin Axtman, taking you along for the ride on this week’s recap.

First, we start with a dreaded subject when you have CP, falls. This was sparked by a post in The Mighty about falling. Members discussed things such as learning to fall and their fear of falling. Hannah learned to fall so well she taught others!

Zach asks if members have been afraid to fall. Hannah tweeted she never feared it and she taught a teacher's daughter how to fall

Zach shared his fears about falling were largely about messing up large events. I shared I had to wear wrist guards due to fear of hurting myself. Heather did not have to worry about this since her mom is a nurse:

Devin tweets he's not afraid, but mindful, zach tweets his fears are screwing up big events, I tweet that I wore wrist guards on the playground. Heather tweeted she did not, but her mom is a nurse.

Zach had a security meeting at work with problematic representation about those with disabilities in an active shooter situation. Chris tweets about experiencing similar things and disaster planning for earthquakes:

Zach had a security meeting at work with problematic representation about those with disabilities in an active shooter situation.  Chris tweets about experiencing similar things and disaster planning for earthquakes

Zach and Shira tweet about the active shooter preparation video with Zach expressing dismay about the portrayal of wheelchair users. Zach and Shira tweeted about how you might experience issues with speed if you are trying to escape an active shooter situation in a wheelchair:

Zach and Shira tweet about the active shooter preparation video with Zach expressing dismay about the portrayal of wheelchair users.  Zach and Shira tweeted about how you might experience issues with speed if you are trying to escape an active shooter situation in a wheelchair
Zach tweets about getting nervous under pressure and then states he might surprise himself, but both agree they hope they never have to find out

We have talked about some heavy things in this recap, so I would like to end by focusing on a lighter topic. Therapy is a constant in many people’s lives with CP. Zach focused on therapy that was effective for us. Grace and I discussed horse therapy:

Zach tweets and asks about a therapy that helped you. I tweeted I loved horse therapy and Grace tweeted she had it from 6-18. Zach tweets he had PT on a weekly basis from 3 until starting college.

This brings us to our Extend-The-Conversation Question: What was your favorite moment in therapy? Please share your answer in the comments and join us each Wednesday at 8 Eastern at #CPChatNow on Twitter.

A picture of a woman jumping and smiling before a purple sky. What was your favorite moment in therapy? is above her head in white and Extend-The-Conversation-Question is below her in white with a white #CPChatNow in the lower left hand corner.

#CPChatNow- 7/31/2019

This past week in #CPChatNow was buzzing as always. Members talked about a recent Micah Fowler interview, a computer mouse versus a track pad, coffee mugs, and also a peanut butter debate. This is #CPChatNow co-host, Devin Axtman, taking you along for the ride on this week’s recap.

First, Speechless continues to be a popular topic during the chats. Forbes had a recent interview with Micah Fowler that is definitely worth checking out. The interview sparked discussion during the chat about how Speechless handled family and disability.

zach tweeted his enjoyment of the interview question about how speechless dealt with family. i tweeted about how my favorite episodes were how the show focused on how cp impacts other siblings. zach tweeted his appreciation of the show's honesty particularly the bonfire episode

Next, debate turned to whether members prefer a trackpad or a mouse with opinions mixed between a trackpad and a mouse.

zach asked if people like a trackpad or mouse. blemi said trackpad. i commented i like apple's trackpad because you can move the cursor and click all on the trackpad
jeni tweets she lost homework assignments because of trackpads due to her heel of her palm hitting the trackpad

Also, #CPChatNow weighed in on the age old debate, smooth or crunchy peanut butter.

Next, Zach asked members how they handle their coffee mug. Blemi and Shira responded they handle both the handle and the mug.

Zach asked if members held the coffee mug handle or cup.  Blemi and Shira responded they handle the both the handle and the mug. blemi said she doesn't take chances after spilling hot liquids

Zach shared he uses travel mugs because they do not get hot and they have lids to prevent spills.

Zach shared he uses travel mugs because they do not get hot and they have lids to prevent spills

This brings us to our Extend-The-Conversation Question: What common items not designed specifically for accessibility do you use to meet your access needs?

Thanks for reading this week’s recap! Join us each Wednesday at 8 Eastern at #CPChatNow on Twitter.

-Devin