Monthly Archives: July 2017

#CPChatNow Recap- 7-19-2017

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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

A street sign behind a clear blue sky with clouds. The sign has arrows saying internet, radio, magazines pointing to the left with television and newspapers pointing to the right. The CPChatNow logo is in white on top of a pink background and the extend the conversation question is also there in white

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#CPChatNow Recap- 7-12-2017

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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 Grace‘s 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

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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

#CPChatNow Recap- 06-28-2017

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The way other people react to your cerebral palsy proved a popular topic during our June 28th, 2017 #CPChatNow Twitter chat. I am co-host Zachary Fenell. For your reading pleasure I gathered some highlights and compiled them into this recap.

To kick off the night’s dialogue, relative newcomer Christine sought advice.

Christine asks the #CPChatNow community for advice on cleaning low places, like a shower.Our community came through with suggestions to help Christine solve her challenges cleaning in low places. I mentioned I use a stool at work to more comfortably organize bottom shelves at the library. Meanwhile co-host Devin Axtman asked a follow-up question to better understand Christine’s situation.

Devin asks Christine for more details on the challenges she faces cleaning low places.Devin related to Christine’s experiences and recommended grab bars. Emotions soon grabbed hold over the conversation when long-time regular Blemi shared a story from earlier in her day.

Blemi shares a story about a stranger who cried after Blemi told him her CP was a birth defect.Blemi’s story really flabbergasted our community. Devin felt dumbfounded regarding how he might react in said situation.

The story Blemi shares about her interaction with a stranger leaves the CPChatNow community flabbergasted.Reflecting more on the situation, Blemi expressed feeling offended and objectified. Her irritation led to the question why someone thinks you can ask such a personal question in the first place.

Blemi wonders what a person thinks before asking a stranger a personal question like "What's with your leg?"I postulated the other person fails to think prior to asking. Instead the question results courtesy impulsive curiosity. Or, “wondering out loud” as Blemi rephrased.

Perhaps you may relate. Let us know by answering this week’s extend-the-conversation question. “What is the most invasive question a stranger has asked you about your CP?” Reply in the “Comments” section.

Continuing the dialogue discussing others’ reaction to CP co-host Jorge Oteiza (previously Blake Henry), recalled explaining his CP to wondering kids.

Co-host Blake Henry explains his CP to the children he works with by saying all people are different.Jorge tells kids wondering about his CP that everyone is different. In my opinion, a great message to tell kids! Differences often cause self-consciousness. Sometimes to severe degrees where the person does not participate in an activity due to his or her differences.

Personally, I like to think I helped reduce the aforementioned last year with the shirt I designed “Run, Walk, Roll, Limp However You Move, Move!” A point I bring up not to self-promote but rather transition to the news I revealed to #CPChatNow June 28th, 2017.

#CPChatNow participants encourage Zachary after he reveals his intention to complete a full marathon this October.Thank you to everyone who offered me supportive words. Enough rambling about me, though! Remember to answer the week’s extend-the-conversation question.

Answer by commenting "What is the most invasive question a stranger has asked you about your CP?"“What is the most invasive question a stranger has asked you about your CP?” Respond below in the “Comments.”

Tweet you soon.

-Zachary