Category Archives: Weekly Recaps

#CPChatNow Recap- 11-06-2019

Posted on by

Election Day in the United States came and went, but Wednesday, November 6th, 2019 participants in the weekly cerebral palsy Twitter chat #CPChatNow maintained focus on issues. To tell you more I am #CPChatNow co-host Zachary Fenell. Like always, I will do that via your weekly recap.

Voting accessibility arose in conversation when I asked participants what their accessibility needs for voting are.

#CPChatNow participants discuss voting accessibility.

As my co-host Devin Axtman pointed out, accessibility at polling places is a huge problem. This left our own “Positivity Princess” Linds to ask if there were assistance signs outside where you can call for help. Devin answered yes, but still noted the problematic nature. Too many polling places are located in non-accessible buildings. You cannot help someone unable to enter the building.

Devin’s comments left me wondering how such buildings could be chosen as voting locations. Swiftly the dialogue transitioned to another important subject.

Voting accessibility conversation transitions to talk about the importance of representation.

Using a single hashtag Linds summarized the problem, #ThingsNoOneThinksAbout. Devin furthered her point, giving a real life example he recently experienced. His apartment built a new sidewalk out to the train station, but without a curb cut.

In my opinion Devin and Linds’ comments emphasizes the importance of representation. The decision making process needs to feature diverse voices. Such voices will ensure items like curb cuts no longer go overlooked.

Meanwhile on an encouraging note long-time chat regular Hannah gave a glowing review for her polling place.

Hannah was genuinely impressed with her polling place's accessibility.

Hannah stated her polling place’s accessibility genuinely impressed her. What about your voting experience? Keep the conversation going! Answer for the week’s extend-the-conversation question, “How is the accessibility at your polling place?” Leave your response in the “Comments” section.

Maybe concerns over your polling place’s accessibility led you to speak out, teaching you to advocate for yourself. Similar learning moments highlighted our chat November 6th.

#CPChatNow participants share the moment they learned to advocate for themselves.
Hannah talks about the moment she learned to advocate for herself.

Moments when participants learned to advocate for themselves varied. Both Devin and long-time chat regular Blemi recalled their first real self-advocacy moments happening in high school. Linds remembered connecting with someone locally from Easter Seals and realizing she was already advocating for herself. Elsewhere Hannah learned to advocate for herself quite young, needing to persist that her bus driver drop her off at her house, not the end of the street.

If the highlights above intrigued you, consider joining the conversation live. Our Twitter chat takes place every Wednesday, starting at 8pm ET. Simply include the hashtag “#CPChatNow” in your tweets. Anyone not on Twitter can enjoy our community by following our Facebook fan page and/or answering the weekly extend-the-conversation question. Again, this week’s question asks “How is the accessibility at your polling place?” Comment below with your answer.

Until next time, remember. Don’t blend in. Blend out!

-Zachary

This week's extend-the-conversation question asks "How is the accessibility at your polling place?"
Leave your answer in the “Comments.”

#CPChatNow- 10-30-2019

Posted on by

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- 10-23-2019

Posted on by

Shared experiences captivated the discussion Wednesday, October 23rd, 2019 during the live cerebral palsy Twitter chat #CPChatNow. I am chat co-host Zachary Fenell here to tell you more. The best way I know how too. Your weekly recap!

Early in the night I mentioned feeling a bit under the weather due to a cold. This led long-time chat regular Blemi to ask a question.

#CPChatNow participants discuss whether cold medicine affects their spasticity.

Blemi wondered whether cold medicine affects my spasticity. I answered no, but noted I must take non-drowsy medications. Drowsy cold medicines do not mix well with my baclofen.

Meanwhile my co-host Devin Axtman provided Blemi reassurance, saying cold medicine impacts his spasticity. What about you? Answer for the week’s extend-the-conversation question “Do you find cold medicine really affects your spasticity?”

The usual routine applies. Leave your response in the “Comments” section. First though, let us continue recapping the October 23rd Twitter chat.

Devin asks #CPChatNow, "What situations have you avoided because of your CP that people without haven't?"

Devin fueled the conversation asking participants to share situations they avoid because of CP. Responses truly varied. Our own “Positivity Princess” Linds said riding a bike.

Heather likes to avoid standing and mingling and eating or drinking at the same time.
Blemi tries avoiding situations where she doesn't know if there will be parking off the street. Plus scenarios in people's homes where she doesn't know if they have railings.

Both Heather and Blemi offered different answers. Heather said she avoids situations involving standing and mingling and eating or drinking simultaneously. Surely a trying balancing act when factoring in CP!

Concurrently Blemi raised issues surrounding parking and handrails. Specifically she said she avoids situations where she doesn’t know if there will be parking off of the street. The same avoidance applies to entering homes where she doesn’t know if people have railings.

Avoiding all the above situations remains understandable. However, there stands no reason to avoid answering the week’s extend-the-conversation question. Again, this week’s question asks “Do you find cold medicine really affects your spasticity?”

This week's extend-the-conversation question asks "Do you find cold medicine really affects your spasticity?"

Reply below to answer. Then set a calendar reminder for 8pm ET every Wednesday. That way you may join the conversation LIVE. Share your own experiences. Enjoy the community. Simply click here at 8pm ET and include “#CPChatNow” in your tweets.

Until then remember. Don’t blend in. Blend out!

-Zachary

#CPChatNow Recap- 10/16/2019

Posted on by

#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- 10-09-2019

Posted on by

Curiosity roared throughout the live cerebral palsy Twitter chat #CPChatNow Wednesday, October 9th, 2019. Here to tell you more, I am co-host Zachary Fenell. Let the recapping begin!

Early in the evening I posed a question. Originally I saw the question asked in a cerebral palsy related Facebook group I belong to.

Zachary shares a question he first saw a mother ask in a cerebral palsy Facebook group.

Within said Facebook group, a mother wanted input on what others consider the best ramp material. Both chat regular Seth and my co-host Devin Axtman deemed metal the best material for a personal ramp. Information I relayed back to that Facebook group.

Elsewhere in our chat Devin raised a thought provoking question.

#CPChatNow participants discuss whether they find World CP Day helpful.

Saturday, October 5th, 2019 marked World CP Day 2019. The recently passed date left Devin asking if we find such days helpful or if all the awareness (World CP Day, CP Awareness Month, National CP Awareness Day) blends in together. Long-time chat regular Blemi said she thinks the occasion is just another way to spread “inspirational porn.” Devin agreed, saying a lot of World CP Day comes across as cliché or just checking a box. I added my thoughts too.

Zachary gives his input on cerebral palsy awareness.

Personally, I believe there remains no such thing as too much awareness. However, I indicated awareness should possess tangible substance. Otherwise you simply end up with awareness as a buzzword. Devin agreed, hitting what I consider an essential point. “Make it (awareness) something people can do something about.”

What do you think? Answer as the week’s extend-the-conversation question, “Do you find things like World CP Day helpful?” Reply in the “Comments” section.

Another intriguing topic arose October 9th when I asked participants about their exercise habits.

Jeni and Zachary discuss their exercise habits.

Specifically I wondered how often people exercised. Jeni showed impressive frequency, explaining she exercises five or six days a week, about 90 minutes at a time. Her exercise regimen has led her to experience less spasms. Others merely find living life with cerebral palsy enough of a workout.

Blemi explains why she doesn't exercise.

Blemi explained she never exercises because she lacks the energy. Daily life and working full-time proves her workout.

Besides a physical workout, exercise that mind by remembering to answer the week’s extend-the-conversation question. “Do you find things like World CP Day helpful?”

Respond below! Then double check your calendar. Make sure you write in #CPChatNow, every Wednesday on Twitter starting at 8pm ET. Until then, remember. Don’t blend in. Blend out!

-Zachary

This week's extend-the-conversation question asks "Do you find things like World CP Day helpful?"
Comment below and answer!

#CPChatNow Recap- 9/25/2019

Posted on by

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- 09-18-2019

Posted on by

A recent news story helped inspire conversation during the weekly cerebral palsy Twitter chat #CPChatNow Wednesday, September 18th, 2019. Here with the full report, I am chat co-host Zachary Fenell. By “full report” I mean your weekly recap. Let the recapping begin!

Early in the night a familiar face resurfaced.

Linds makes her return to #CPChatNow.

After a short hiatus Linds returned to #CPChatNow! Over the years within our community Linds picked up the nickname “Positivity Princess.” Hearing her health upsets now remain stable provided positive vibes.

The optimism continued flowing when I asked a question.

Zachary asks #CPChatNow to fill in the blank for "Cerebral palsy has made me..."
Zachary and Grace discuss CP making them dedicated, stubborn, and determined.

I asked participants to fill in the blank and answer “Cerebral palsy has made me…” Co-host Devin Axtman said CP has made him mentally tough. Meanwhile I replied to my own question, saying CP has made me dedicated. Grace offered a similar reply, crediting cerebral palsy for making her stubborn and determined.

What about you? Answer as the week’s extend-the-conversation question, “Cerebral palsy has made me (Blank).” Leave your answer in the “Comment” section.

Another question I asked Wednesday, September 18th, I based off a recent news story I shared “Arvada boy walks thanks to school resource officer.”

#CPChatNow participants share a time someone went above and beyond for them.

Basically the article highlights a school resource officer who went above and beyond to help a student with cerebral palsy. Therefore I asked participants to share a time someone went above and beyond for them. Devin could not just name one occasion. Instead he expressed how fortunate he feels having an amazing support system.

Blemi highlighted a particular pillar in her support system, her mom. Keeping to the mother-daughter theme, Veronica answered saying the time her daughter got her friends to wear green for CP awareness.

Speaking of awareness, thank you Tinu for helping to spread awareness about #CPChatNow and other disability related Twitter chats.

Tinu tweets out about disability related Twitter chats, including #CPChatNow!

Our chat happens every Wednesday. I hope to tweet you soon. Before then though, don’t forget to answer the extend-the-conversation question. “Cerebral palsy has made me (Blank).”

This week's extend-the-conversation question is a fill in the blank question. "Cerebral palsy has made me (blank)."
Answer in the “Comments.”

Until next time, remember. Don’t blend in. Blend out!

-Zachary