The Fallibility Of Men

I’ve stayed away from making any comments about the current climate of sexual assault. It was a conscious decision, one I don’t regret at all, and had no intention of changing, that is until things got too close for comfort.

I’d recently heard that someone I’ve held in high regard has multiple accusations of sexual abuse against them.

(I will not be naming this person because that is not the point of this post and I don’t want to engage in a debate on the subject)

I’m heartbroken, as anyone would be.

What I’m surprised by is the other emotions that have surfaced.

I now have some clue of what people mean when they say, “They would never do this,” or “If this were true I would have known.” Etc.

I can honestly tell you from the bottom of my heart I would have never imagined this person would ever be accused, never mind have the accusations be found as credible.

It effects “other people.”

I thought I knew it didn’t just happen to “other people.”

My brain was wrong. I was wrong.

I’m included in “those other people.”

I understand that people want this person to go to prison, I would too if I could see this objectively without needing to remind myself that I should stay as objective as possible. I don’t want to see them go to prison but if that’s what the law calls for then that’s what needs to happen. How I (or anyone else) feel about the situation should not come into play.

Such acts, like some others, are unforgivable, and inexcusable.

I, also like most people, are wondering what the hell we’ve been a part of for so long.

How could this have happened?

How could it have stayed a secret for so long?

Why didn’t someone say something before now, and even if someone did than why didn’t someone else listen before now?

I can honestly tell you, and anyone else that may have their own doubts, that what you know of a person may not be the whole picture. They could have secrets, even not-so-secret secrets . The person you know may not be the same person other people know, even if they inhabit the same body.

Men (and women) are not infallible.

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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)

I Wish I Was A Unicorn

On a recent episode of The Accessible Stall Kyle & Emily talked about employment/unemployment. Naturally this topic hits close to home at the moment, so I gave it a listen, naturally.

2018-04-25

You should give it a listen when you’re done here.

Both Emily and Kyle acknowledge that they’re both in the unique position of being gainfully employed but that’s not the part that stood out to me, although it should be noted that it’s highly unusual for two normal (meaning not really that famous) disabled people to be financially self-sufficient.

They called themselves unicorns.

Then it hit me.

I wish I was a unicorn too.

I want to be a unicorn.

I do have a dream job in mind, several actually. I’d like to achieve my dreams but right now I want to be a unicorn.

I am already a unicorn, in a sense, but I don’t feel like a “full unicorn.” I have no upward mobility in my current job. Some days I feel like I’m just filling a spot until someone else comes along or I leave my position. So, I’m more of a non-unicorn than the actual unicorn I wish I was.

There you have it, I’m still looking for a job. If it happens to be my dream job than that’s a bonus. But more than anything I want to be a unicorn, not because I want to be a unicorn, but because I don’t think anyone should go around wondering or knowing if they are the unicorn of their workplace in the future.

#ILoveMyDisability

There was a time when I’d spend my nights reading blogs, but these days I’m more likely to read threads of hashtags.

#SayTheWord & #StopAbleism2015 are two that kept me up late at night scrolling though people’s thoughts. #ILoveMyDisability is just the latest one.

I thought I’d share a few of my favorites, in no particular order, for no particular reason:

 

Maybe I’m Not An Expert

With March coming to a close so goes my blogging blitz. It never ends up how I think it’s going to and this year was no exception.

I feel like this year was different than the others, for a few reasons, less facts, more stories, for one thing, or is that two?

There were topics I wanted to write about but never got around to or have already written about. When I came up short I dove into my archives, probably more than I wanted to, but it worked. I think?

I’ll get to more stories later on, possibly when the timing is better.

One thing that kept getting my attention this year was the focus on children and the desire to treat, if not cure Cerebral Palsy as soon as possible.

This isn’t new by any means, but it seems to be gaining more attention for whatever reason.

In a way my focus this past month has been more personal because it’s how I’ve grown into adulthood and the different phases of life that people, CP or no CP, find themselves in.

Not every aspect of life comes with statistics, and even those that do come with outliers.

So, for now, and probably in the future, I leave you with more stories than statistics because you can find statistics somewhere else.

Life as an adult with CP is an oddity, a misconception which I brush up against every day, so although Cerebral Palsy Awareness month is over that doesn’t mean my efforts are over, at least not completely.

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All Cerebral Palsy related posts

Cerebral Palsy Awareness Day

I’ve made no secret that I’m not the biggest fan of awareness days, yet I feel obligated to participate in them. Tomorrow is National Cerebral Palsy Awareness Day in the US, not to be confused with World CP Day which occurs during the fall.

There is a senate resolution officially designating March 25th as National Cerebral Palsy Awareness Day.

I’m not one to keep up the daily goings on of the senate, or any other governing body, so I don’t usually read official documents, but I read the resolution to see what it entails.

S.Res. 400 is a bit of a disappointment, unless I’m misunderstanding the purpose of senate resolutions, and if that’s the case someone please feel free to explain it to me.

All it says is what we already know, or information that can readily be found during a basic internet search.

I was hoping for something more, even just a little bit more.

I know the government is deeply divided but if this has become standard operating procedure in order to get our elected officials to agree to known facts than maybe we need to reexamine how things are run and who we are electing to run things.

So the government needs to agree that a condition that’s been around for 100s of years before agreeing that it needs recognition. Does this not sit well with anyone else, or is it just me?

We have a resolution that says tomorrow is National Cerebral Palsy Awareness Day. But what does that really mean? More importantly, what comes next?

march-25th-is-like-and-share-cerebral-palsy-awareness-day

*A similar version of this post was written on March 25, 2016

It’s Not Easy Being Green

When you think of March what color do you think of?

I’m guessing green since St. Patrick’s Day is in March & St. Patrick’s Day is all about green (at least the “rated G” version is).

Guess what color Cerebral Palsy awareness is?

Green.

I believe I have figured out one of the barriers of raising awareness for Cerebral Palsy.

Allow me to take you through my thought process.

October is breast cancer awareness month.

The color for breast cancer awareness is pink.

A color most associated with October is orange, due in large part to Halloween.

Would breast cancer awareness be as big as it is if February were its month?

Something tells me the answer is yes, but it’s still something worth considering (especially for the sake of this argument).

There are too many similarities in the basics of St. Patrick’s Day & CP awareness. There’s not enough curiosity of “check it out” factor to make awareness easier (but that’s just my opinion).

There’s also been talk of why green is the color for CP. Green happens to be one of my favorite colors so I have no problem with it, but I know not everyone is a fan.

I’m curious as to why March ended up being CP awareness month. Let us also remember that the r-word day and Down syndrome day are also in March.  It just seems kind of odd that a lot of disability related awareness is in one month. If this was on purpose then why isn’t March “Disability Awareness Month”, which is actually in October (or has that now been deemed “Disability Employment Month”).

Is the confusion part sinking in yet?

I’m not suggesting that we change CP awareness’ color or its month. It’s too “late” in the game for that. Changing any of those details now would just add to the confusion and just continue to feed into the attitude of “un-awareness”.

So what’s a community to do?

The answer is easy.

It’s the execution that’s more difficult.

The good thing about the CP community is that all its members are used to difficult. It’s practically in our DNA.

The solution?

Be the loudest group.

However, it’s not a “he who yells loudest wins” situation (although that would make things slightly easier).

The CP community needs to be the loudest but it also needs to be the smartest (as well as the stubbornest).

The odds are stacked against the CP community. They always have been, and for way too long.

I think Kermit the Frog said it best, “It’s not easy being green.”

*A similar version of this post was written on March 26, 2014, March 17, 2015, March 17, 2016, March 17, 2017

End The Word

I stayed away from taking a stand on the r-word for many years on purpose, basically because I don’t feel like “the r-word” applies to me and I don’t have a strong opinion on it (at least not in comparison to others). I’m also not a big fan of banning words. There are words in the English language that I won’t ever say out loud under most circumstances, but I don’t think banning a word and pretending it never existed is a great idea. (But if someone ever wanted to get the ball rolling on banning the word “panties” from existence I’d be game)

I know there are people out there who think my thinking that the r-word doesn’t apply to me as some kind of defense and I’m sure on some level it is.

For the record I have had the r-word pointed in my direction. There have been times I’ve told people that I have CP and their next question is, “So are you retarded?”

Let me just say, no I’m not, for the record.

One of the biggest misconceptions of CP is that everyone with CP, which is a physical disability, also had a mental disability. This is not the case for everyone. I, myself have LD & ADD, but both are relatively mild and neither make me retarded.

I realized that I was saying something by not saying anything directly. I’ve been implying that the r-word is OK with me, and truth be told, it’s really not.

I can sum up my thoughts on the r-word in one sentence.

Ready?

Keep in mind that these are my personal feelings, and my personal feelings only.

Pick another word already.

If you’re going to try and insult me, please be a little more creative. I’ve been on the receiving end of insults for the better part of three decades and they’ve varied only slightly. I don’t even consider them to be actual insults just hollow sounds, think the teacher in Charlie Brown cartoons.

If you want to hurt my feelings evolve with the rest of the world and leave the r-word behind. Finding some other way to insult me will get your mission accomplished. Calling me the r-word will only make you like a fool, at least to me.

In “The Last Lecture” Randy Pausch suggests going for a cliché because they’re clichés for a reason, most people have never heard of them.

As much as I liked listening to “The Last Lecture” and find it valuable I have to disagree on this one point. If you want to get under someone’s skin there’s a 99.99% chance that they’ve heard every cliché, and then some. Stay away from being average if you really want to get someone’s attention.

If you’re still using the r-word to offend someone it’s about time you update your vocabulary to something much more cleaver. You aren’t going to get the reaction you’re looking for (at least out of me). I’m more likely to walk past you and call you a dope under my breath.

If you’re using the r-word “because you don’t know any better.” It’s the 21st century, you know better. You choose not to educate yourself.  So, you also fall into the “still using the r-word” category. That’s your problem not mine; who looks stupid now?

*A similar version of this post first appeared on an old blog on March 5, 2018

I’m Not An Expert, But I Play One In Life

March is Cerebral Palsy Awareness month, as a person with a disability, which happens to be CP, I feel obligated to do my part in spreading a greater sense of awareness; because although CP is common few people really know about it.

I’m not an expert in CP. I have not studied it in textbooks, read studies, or analyzed people with the disability, from an objective standpoint.

I’ve lived more than three decades with Cerebral Palsy; I’m not an expert, but I play one in life.

Lecture halls and textbooks have their place but there’s something to be said for the value of living something day in and day out without the sterility that can come with formal education.

So, what do I have to tell the world, or at least the internet?

It all depends.

I used to put everything out there, or at least that’s what it felt like, now I pick my spots, just because I don’t put it out there doesn’t mean someone else can’t put it out there, or just because it’s not out there doesn’t mean it has to be out there.

Boundaries, they’re a wonderful thing, when used well.

But boundaries can, and do, change.

Every once and a while I relax the boundaries, and it’s mainly for one reason.

I can talk about Cerebral Palsy as much as I want but there’s only so much writing and talking I can do without some sort of feedback. There’s only so much yelling into a void anyone can do before losing their voice?

I’ve done this before, and I want to do it again.

What do you want to know?

What questions do you have?

What possible myths have you heard?

What do you know about Cerebral Palsy?

What do you wish you knew, or even had the slightest idea about?

I know parents of kids with CP & young adults with CP read my blog. Both groups have questions and opinions (I would too if I were in their place).

I may not have all the answers to every question or myth that there is out there, but I believe I can provide guidance and provide inroads.

I’ll be the first one to tell you that I’m not in expert in Cerebral Palsy, but I do have live experience to draw on, and that’s not something I take lightly.

World CP Day

Cerebral palsy (CP) is an umbrella term encompassing a group of non-progressive, non-contagious motor conditions that cause physical disability in human development, chiefly in the various areas of body movement.

Cerebral palsy describes a group of permanent disorders of the development of movement and posture, causing activity limitation, that are attributed to nonprogressive disturbances that occurred in the developing fetal or infant brain. The motor disorders of cerebral palsy are often accompanied by disturbances of sensation, perception, cognition, communication, and behavior, by epilepsy, and by secondary musculoskeletal problems.

CP, formerly known as “Cerebral Paralysis,” was first identified by English surgeon William Little in 1860. Little raised the possibility of asphyxia during birth as a chief cause of the disorder. It was not until 1897 that Sigmund Freud, then a neurologist, suggested that a difficult birth was not the cause but rather only a symptom of other effects on fetal development. Research conducted during the 1980s by the National Institute of Neurological Disorders and Stroke (NINDS) suggested that only a small number of cases of CP are caused by lack of oxygen during birth.

Types Of CP:
Ataxic
Athetoid/dyskinetic
Hypotonic
Spastic

All types of cerebral palsy are characterized by abnormal muscle tone, reflexes, or motor development and coordination. There can be joint and bone deformities and contractures (permanently fixed, tight muscles and joints). The classical symptoms are spasticities, spasms, other involuntary movements (e.g. facial gestures), unsteady gait, problems with balance, and/or soft tissue findings consisting largely of decreased muscle mass. Scissor walking (where the knees come in and cross) and toe walking (which can contribute to a gait reminiscent of a marionette) are common among people with CP who are able to walk, but taken on the whole, CP symptomatology is very diverse. The effects of cerebral palsy fall on a continuum of motor dysfunction which may range from slight clumsiness at the mild end of the spectrum to impairments so severe that they render coordinated movement virtually impossible at the other end the spectrum.

CP is not a progressive disorder (meaning the brain damage neither improves nor worsens), but the symptoms can become more severe over time due to subdural damage. A person with the disorder may improve somewhat during childhood if he or she receives extensive care from specialists, but once bones and musculature become more established, orthopedic surgery may be required for fundamental improvement. People who have CP tend to develop arthritis at a younger age than normal because of the pressure placed on joints by excessively toned and stiff muscles.
(information taken from Wikipedia and reorganized/edited by me)

Why am I telling you all of this?

Because there is no cure for CP.

But I have to be honest that’s quite fine with me, most days anyway.

That doesn’t mean there can’t be a collective of sorts. Stats are one thing.

Personal stories are another, and even better.

Which is why I collected all the personal stories I could find and put them in one place.

If you have a CP blog, have one that you like, or just know one, leave a comment with the URL