Revisiting: The Roll Call

Since I’ve been musing about the possible death of blogging and the importance of not overstepping boundaries when it comes to storytelling I thought it would be a good idea to revisit (and then repost) the database of Cerebral Palsy related blogs, with a few vlogs thrown in.

It’s worth noting that many of these blogs haven’t been updated in years and are written by people who have family members who have CP, both facts that bring to light my previous points. However, they all have content worth looking at if you’re interested in getting to know a few individuals that make up the CP community.

This same list will be updated and expanded on an as needed basis here.

A Life Less Ordinary

A.J’s Awesome Adventures

A Place To Write Things

A T-Rex Life (Videos)

A T-Rex Life: Cerebral Palsy And Me

About The Small Stuff

Adapted World

Adventures In Mattyland

Amazing Amelia

Amazing Syafiah & Co

An INFJ With CP

And The Wheels Keep Turning

Andersen Family Blog

Ayla’s Rainbow Connection

Better Than Normal

Bird On The Street

Brace Yourself Declan

Brendan’s Life With Cerebral Palsy

Brielle and Me

Bringing The Sunshine

Caleigh’s Corner

Caneable

Cerebral Palsy Baby

Cerebral Palsy Daily Living

Cerebral Palsy Family

Cerebral Palsy Mamma

Cerebral Palsy Soccer

Coley’s Corner

CP Shoes

Cracks In The Pavement

Crip Video Productions

Dealing With My Life With CP

disABLED guy

Do It Myself Blog-Glenda Watson Hyatt

Drake And Lulu

EMDeerx Muse

Endless Jubilee

Finding My Way: Journey Of An Uppity Intellectual Activist Crip

Following Elias

Free As Trees

Gas-Food-Lodging

Hannah’s Adventures of Living Her Dreams

Hanpike

Henry’s Heroes

How Life Happens

I Heart Milo

I Will Skate

In Bloom

In My Eyes: Life With Cerebral Palsy

In The Words Of A Green Giraffe

Insights From The Sidelines

Isla’s Journey

Jake Olver (Videos)

Jentry Holthus (Videos)

John W. Quinn (Videos)

Journey With CP (Videos)

Jude, The Diary Of A Baby and A Stroke

Jump In For James

Kaitlyn’s News- Living A Happy Life With Cerebral Palsy

Katherine Hayward, My Life With Cerebral Palsy

Kelsey Can

Kendall’s Hope

Kristen’s Life With Cerebral Palsy

Lieck Triplets

Life And Family, Steve Wampler Is Living With Cerebral Palsy

Life In Holland

Life With The Loraines

Living My CP Life (videos)

Love That Max

Making My Mark

Mark Henry

Massagermommy

Mattes’s Madness

Micro Preemie Twins: The Story Of Holland & Eden

Miss Charlie

Missy’s CP Journey

My (dis)Abled Life

My Life With CP (Videos)

My Spelling Sucks

Nich Vaughan

No Superhero

Off Balanced

One Day At A Time

Our 3 Little Miracles

Outrageous Fortune

Painting For Hailey

Premeditations: Reflections On Preemie Parenting

Riley’s Smile

Rob J. Quinn

Ryn Tale’s Book Of Days

Sammy’s Walk Through Life

Smith’s Holiday Road

So… How Did You Break Your Leg Then?

Spashionista Report

Speak Up, Sit Down

Special Momma

Stories With Sam

Team Aidan

That Crazy Crippled Chick

The Blessing Counter

The CP Diary

The Deal With Disability

The Fabulous Adventures of a Four-Legged Woman

The Galli-ringo Family

The Girl In The Wheelchair

The Grappler Within

The Nest

The Writer

Three Chocolate Brownies

Tonia Says

Trailblazing With CP

Trousdell Five

Tutti Frutti

Twingle Mommy

Unexpected Lessons

Updates on Lewis Jack

Verses Of Vaughan

Victor’s Smile

View From A Walking Frame

Welcome Blessings

Welcome To Elijahland

Wherever He Leads We’ll Go

Writer In A Wheelchair

Zachary Fenell (Videos)

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Speaking, Again

The last podcast recording I meaningfully took part in was about a year ago. I was feeling that it was time to move on, because podcasting is more work than I had anticipated, even though I basically just show up and talk.

However, the fates had other plans.

I stopped watching Speechless halfway through the season. It wasn’t intentional, but it was a perfect storm that made it pretty easy to stop watching & not feel like I missed anything.

Instead I watched other things, on network TV, cable, and Netfl!x; and noticed a lot of portrayal of disability (and lack thereof, etc.).

Some of it was good, some was great, some was downright horrible. I asked Daniel if he would be interested in recording a podcast on the subject, and he was.

So, we did.

2018-05-02

What do you think about the various portrayals of disability on TV (or media in general? Do you have any favorites? How about aversions?

Not Rare, Nor Diseased

Rare Disease Day is the last day of February. Around that day a few people sent me messages wishing me a “Happy Rare Disease Day,” I appreciate the sentiment, but it’s uncalled for.

Although the media, even credible news outlets can mess it up.

Cerebral Palsy is not a disease.

It is a neuromuscular disability that effects movement, like motor skills.

It can also affect senses, like hearing and/or vision.

It is permanent, but symptoms can change.

It effects each individual that has it differently.

There are 4 main types of CP.

It can affect anywhere from 1-4 limbs.

There are treatments, but no known cure.

It is not rare.

The prevalence of CP is 1 in 323 U.S. children, and over 17,000,000 people worldwide.

It is the most common childhood disability.

CerebFig.2

CP, Aging & Death

Disclaimer: this post isn’t meant to be depressing, but it may end up that way, so proceed with caution.

Around “Rare Disease Day,” yes there is such a thing I received a text asking a simple question.

“Is there any chance of early death with CP?”

Thus, ensued a conversation on whether the direct cause and effect of one’s death can be attributed to CP.

Such a fun conversation, but necessary given the various misconceptions around CP.

For the record, Cerebral Palsy itself does not shorten someone’s lifespan but often other conditions that can come along with CP do shorten a lifespan.

Not long after my conversation John W. Quinn posted a video about age and Cerebral Palsy.

John is the oldest person I know with CP but I may have met another person who is older, but just once and I can’t remember who exactly she is.

Cerebral Palsy within itself does not cause someone to die sooner than expected, unlike other conditions like CF, but it does bring on the aging process at a faster rate.

If you ever heard me get out of bed in the morning you’d know exactly what I mean.

Because our muscles are tight most of the time it puts more stress on bones and joints than the average person causing them to “crack under pressure,” so to speak, earlier than most.

Chronic pain is very common for people who have CP, no matter what age they are.

When talking about CP, aging, and “death by CP” the answer isn’t as clear cut if you have other issues that have an effect on your health, but it’s also not a topic that gets talked about a lot either, again because CP is seen as a “kids disability”.

On Being An Activist, Not An Inspiration

Typically I write and schedule my posts ahead of time. For someone with some of the worst time management skills on Earth, coupled with ADD, it’s just a better system (and why I can’t manage to post every day without some sort of help).

When the news broke that Stella Young died unexpectedly I changed my plans.

She wrote a letter to her 80 year old self, that people shared all over the place. I read it at my earliest opportunity, which happened to be the night I heard of her death. (I’ll spare you my philosophical and emotional thoughts on that).

Although I never got the chance to know Stella personally I feel a sense of loss with her death. I don’t want to go all, “We few, we happy few, we band of brothers,” but it wouldn’t be the biggest stretch of the imagination since the bonds of the disability community seem to run deeper than the everyday population.

There’s this thing that happens when you’re asked to give a speech, at least if you’re anything like me, you spend more time watching other people give speeches (and thanks to the interwebs this can go nonstop for days on end). You don’t really listen to the speeches either; instead you’re watching their posture, movements, what they do with their hands. Seriously, what to do with my hands always puzzles me.

I really wanted to find wheelchair (or crutches, walker, cane) users giving speeches & how they handled their time in the spotlight. What do they do with their hands? What’s their mic set up? Do they use note cards or have notes on their computer from behind a podium?

And I found Stella.

I watched how she presented herself AND her topic.

She made me laugh, not just because she brought humor to her talk but because there are some experiences that everyone with a physical disability seems to share, and if you don’t laugh about it the inner angry cripple isn’t going to become the outer angry cripple.

She’s also the one who introduced me to inspirational porn.

It’s also nice to see someone else out there who has a similar outlook on life and similar thought process, and has a bigger platform no less.

One of my favorite quotes from Stella is this, “I want to live in a world where we don’t have such low expectations of disabled people that we are congratulated for getting out of bed and remembering our own names in the morning. I want to live in a world where we value genuine achievement for disabled people.”

I don’t like living in a world where working incredibly hard to regain your physical baseline is seen miraculous. It’s not fair to the person with a disability or the one(s) claiming miracle, not to mention a big fat lie.

Stella wouldn’t like it if I ended this by calling her one of my inspirations, so I’m not going to do that. She’s not an inspiration, but she’s shown so many how to advocate and be an activist. That cannot be overlooked.

I read that Stella considered herself to be an atheist ever since she heard that there was only a stairway to heaven. So wherever she is now, if anywhere, I hope it’s universally designed I know many of you out there have no idea who Stella Young is so I wanted to give you a chance to get to know her the same way I did.

17 Things Stella Young Wanted You To Know

How Stella Young Wanted To Be Remembered:’Strong and fierce, not sweet or fragile’

*A similar version of this post was published on December 10, 2014

An Ode To Sweet Caroline

Almost a year ago I (finally) met my new comrade, named Caroline.

Caroline

Yes, my wheelchair has a name.

You honestly didn’t think I’d let a CP Awareness month go by without a post about wheelchairs, did you?

I came across a vlog recently that sums up some of how I feel about wheelchairs, and the choice to use them.

I don’t know why people have such strong feelings, that they feel need sharing, about something that should be a personal decision. For me, a wheelchair isn’t a hindrance. Instead its independence.  Part of the reason why I gave my chair a name is to make it (or should I say her?) more approachable. A wheelchair isn’t a symbol of loss, it’s a symbol of modification.

They Forgot Me On a Plane

Feel free to watch before you continue reading.

My experiences traveling are different than Mike’s although there are enough similarities to relate.

Here’s the thing about traveling with a disability (from my experience), no experience is ever the same; even with something as standard as TS@ procedures.

I have family settling in North Carolina (with Florida being a close 2nd) faster than should probably be allowed. I need to figure out streamlining my air travel to anywhere in North Carolina or else my wallet would continue to be emptied in BWI out of sheer boredom.

There’s also the matter of traveling from point A (my home) to point B (North Carolina) could take anywhere from a 2 hour flight to an 8 hour day (if more than 1 flight & layovers are involved).

I got lucky when I remembered that Charlotte is a hub for a major airline (you can probably guess the airline that shall remain nameless).

At least I thought I was lucky (see: title of this post).

I did everything possible to prepare airline staff of my needs. I told them what I needed & asked questions for further clarification. I got nervous when I boarded the aircraft; due to its size, but sitting by the window helped. I slept the entire flight thinking I was in the clear.

I like to sit towards the back of the aircraft for two reasons, it’s easier on my spine & the ground crew needs time to retrieve my wheelchair, sitting towards the back allows them to do this without agitating me.

As I approached the door of the aircraft to deplane I caught the eye of one of the flight attendants.

“Oh no. We forgot you were onboard. Will you need a ramp?”   

 You what? Will I what?

I look out the door to see a flight of airplane stairs & they’re steep.

I guess that’s what that ‘do not walk behind the wings of the aircraft’ warning was all about. And come to think about it no one asked about whether I’d need assistance upon arrival.

Now I know to bring it up before leaving the departure gate before boarding……

I was tempted to ask the flight attendant just how she thought they’d set up a ramp safely now that half the plane was empty and the other half were waiting, but I held my tongue. I told the person I was traveling with to go in front of me so I would have a better grasp on spatial awareness (by looking at her shoulders instead of the stairs).

I made it down the stairs & I looked for my wheelchair, which was placed (brakes on, to my surprise) in front of the wing, just barely.

While waiting for my luggage to be unloaded I snapped a picture of the plane to send to friends & family, with not so comical commentary, to let them know we had arrived safely. Not long, maybe 3 seconds, after I press send I start getting replies.

“How did you make it down the stairs?”

“Didn’t you tell someone you needed help?”

“What if you couldn’t walk?”

The last question was the one that really got to me. I’m fortunate that I have good enough mobility that I can make do when unexpected situations arise. As unpleasant as being a forgotten passenger was the situation could’ve been worse. I could’ve been stuck on the plane until they got the ramp, however that would’ve happened.

Getting into the terminal was another challenge. I was told, and I’ve also read, beforehand that the Charlotte airport was going though major renovations. I hope this is true, because if things stay as they were the accessibility is pretty terrible.

I hope that eventually, meaning sooner rather than later, that every flight can be given a jet-way that leads straight into the terminal so stairs and/or the need for additional ramps isn’t even a thought.

I’ll probably use the airline & the airport again. It wouldn’t be my first choice. If there is a next time, for whatever reason, I’ll be better prepared. I hope the airline will be as well.

When I’ve retold my experience to others they’re shocked that the flight crew forgot I was on board. It wasn’t the first time it’s happened & it probably won’t be the last. I do my best to express my needs and concerns to who needs to know, and maybe a few who don’t. That’s all I can do. But that doesn’t make it suck any less.

Do you have any interesting travel stories?

*A similar version of this post was written on May 20, 2013

Crazy Little Thing Called CP

I can’t tell you about the craziest thing I’ve heard, true or not, about Cerebral Palsy because there’s been so many. Also, I can pretty much guarantee that at least one of my readers has heard something far more ridiculous so I’m not even going to go there.

Instead I’ll share a few vlogs with you:

I’m participating in WEGO Health’s Health Activist Writer’s Month Challenge. If you want to find out more about Health Activist Writer’s Month Challenge visit their blog, Facebook, Twitter. You can find more posts by searching #HAWMC.

 

Disability & Body Image

Body image is a big issue and so is disability so disability and body image is a big(ger) issue. I’ve watched a few videos related to the “body image tag” from Robyn, Annie, and Gabby in particular, and it got me thinking (not enough to start a Y0uTube channel mind you). Here are my thoughts, in the hopes that maybe it’ll help someone in some way.

1) Do you think you are “traditionally/mainstream” attractive? Does it matter to you?

I don’t think I’m “traditionally/mainstream” attractive for a few reasons but the one I’d like to mention is because I have a disability. Mainstream society, thanks in big part to the media, doesn’t find disability traditionally attractive. So no I’m not traditionally attractive, but there is “a lid for every pot,” as they say, so I’m attractive to someone (hopefully not in that devotee way).

It doesn’t matter to me that I’m not traditionally attractive. I’ve put too much work into my body to make it functionally and “workable” for myself, but I’d be lying if I didn’t say I sometimes care, even slightly. What matters more to me is the devotee issue. From my experience I struggle with people finding me attractive without some sort of fetish attached to it

2) What was your biggest insecurity when you were a teenager? What is it now? How has your body image changed?

My biggest insecurity as a teenager was that people would notice that I was disabled. In hindsight it seems pretty ridiculous since it’s obvious that I have a disability. I wasn’t big on using mobility aids as a teenager because I wanted to blend in, plus I didn’t think I needed them.

My biggest insecurity is wondering if people are looking at me and why.  I know people look at me. It’s so commonplace in my life now that I hardly notice it but when I do I wonder why they’re looking at me. Are they shocked? Inspired? Unimpressed?

My body image has changed a lot especially in the last few years and it has a lot to do with my last surgery. I know most people think/feel that your self-image should be tied to an event or something else and I used to say the same thing. Then I turned 30 and things became solidified even more. I’ve come to appreciate what my body has become and the work I put into it. I’ve also come to accept that I’m probably not anyone’s idea of “perfect” but I am who I am take it or leave it.

3) How does your style play into your body image?

Style does play a part in my body image. I try to put some effort into my style knowing that in a way how I portray myself will impact how someone else will view people with disabilities. I don’t spend hours getting ready every day but I do make sure my clothes match and are suitable for whatever I have planned that day. Also when I feel like I look good I tend to tend to be in a better mood.

4) How do you define your beauty?

Is it bad that this is the hardest question for me to answer? I know I’m not obviously beautiful and I’m totally fine with that. But it’s not like I can point to one thing and tell you that’s what makes me beautiful either, probably because it depends on the day. I do have this odd sense of satisfaction of seeing a good photograph and realizing I’m either in it or I took it.

Why I: Am An “In-Between-er”

I’m always looking for topics to relate to or give my two cents on. I’d like to say it’s because I like to keep up with what’s going on in the disability community, particularly for those living with CP obviously, but the truth is sometimes it’s just hard to think.

There’s one video in particular that I tend to think of when I’m asked about my physical abilities.

I, like Amanda, am very much an in-between-er.

If you ask anyone who has been involved in my medical care I’m pretty sure they’d agree as well, at least medically. It’s been a case of “this or that” ever since I can remember.

If I stopped to think about it my day to day life hasn’t been much different either.

-I’ve been labeled “too disabled” and “not disabled enough” in the same conversation.

-I may have hiked one of the most famous mountains in the Northwest but I can’t get through the grocery store without some form of pain, and let’s just not talk about discount stores.

-I can navigate some of the biggest airports in the world but I can’t drive myself down the street.

-I can swim faster than most people I know but they can walk faster than I can run, ever.

-I’ve taken care of groups of children with great success on my own, yet I’ve had people doubt my ability to care for a child of my own (and I don’t even have a child, at least not yet).

-People assume I live off the government, which is wrong, I don’t receive any government assistance and I am currently debt free.

-I have a learning disability but I was often in the top percentage of my classmates in my academic career.

-I can cook dinner for a group of friends but I can’t carry a cup with something in it without causing a spill, usually.

-I can lift (and/or press) more than my body weight, but if someone bumps in to me, even slightly, I’ll often stumble.

-I’m seen as young and capable in the everyday workplace but too old and risky in medicine.

-As much as I’ve accomplished I’m constantly having to prove myself.

-I have been judged for being too disabled & not disabled enough in the same conversation.

-I’ve had once in a lifetime experiences that not everyone gets to experience yet I struggle to complete tasks people do every day.

-Just because I can or can’t do something today doesn’t mean I’ll be able to do it tomorrow and vice versa.

*A similar version of this post first appeared on an old blog on September 19, 2013