Cerebral Palsy Awareness Month: 2019 (Review)

Cerebral Palsy awareness month ends this weekend, which means today is the last day for my month-long marathon of posts. I always say that it gets harder and harder to come up with topics each year, and this year was no exception.

However, this year I managed to stir up more controversy than usual. It’s not something I intended on doing but I’m not 100% sorry for anything I’ve said either. So, I’m in a different position this year than I have been in years past. I’m happy to have a blogging break but I’m taking what I’ve learned this month and I’m going to use it in my future endeavors, in some fashion.

Rather than try and sun up the month with some grand conclusion I’m just going to outline all of the posts I’ve written this year and include some others.

As for next year, we’ll all just have to wait and see what happens.

2019 Posts:
Cerebral Palsy Awareness Month: 2019
That Thing About The Road To Hell
A Question About Questions
Spread The Word
End The Word
Back To Basics
Growing Up Disabled
Cerebral Palsy: Blogs
Cerebral Palsy: On Twitter
Cerebral Palsy: On Instagram
It’s Not Easy Being Green
Cerebral Palsy: Books
Cerebral Palsy & Aging In Community
Difference Is OK
Cerebral Palsy: Movies & TV
7 Questions: A Few Years Later
Cerebral Palsy Awareness Day
Poor Fortunate Souls
Chase Dreams, Change Dreams
Cerebral Palsy In The Future

(Previous posts)

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Cerebral Palsy In The Future

This topic makes me a little nervous, although the title implies some level of boldness, so let’s hope that’s the direction in which this is going to go.

Cerebral Palsy in the future, what will it look like?

Selfishly I hope it’s still around in 20, 30, 40, 50, or more years from now.

Why?

Because I don’t see the need for a cure.

Living with Cerebral Palsy isn’t a walk in the park by any means but I rarely, as in almost never, wish I didn’t have Cerebral Palsy.

I’m not saying that some cases of CP shouldn’t be prevented if there’s a direct case and effect for it, like an infection that then results in injury that results in a diagnosis of CP.

What I’m saying is I don’t think all Cerebral Palsy should be eradicated.

Cerebral Palsy is a disability not a disease that needs to be treated, unlike something like polio, for example.

I don’t see CP in itself a problem, the comorbidities that can accompany it are a different story, the problem with living with CP is more about faults in the healthcare system rather than the diagnosis itself, from my point of view.

I wish more doctors knew about Cerebral Palsy and were willing to have people with CP as their patients. I want to get the same quality of medical care as my able-bodied peers. I don’t want to keep seeing the glazed over eyes and quizzical faces when I go over my medical history, just because I have the most common motor disability in children.

I would rather curing efforts go towards something like epilepsy, which can improve the lives of many people with and without CP.

I also wish there were more studies on CP past the point of the early teen years. I wish I knew more of how my life could look like 10 or 20 years from now. All this effort goes into the pre-adult years but not what happens after. I’ve said it before, and I’ll say it again. Children with CP grow up and become adults with CP so we need to know what we may be facing in the future.

The lack of treatments for adults is another issue that’s probably too complicated to go into here and now, especially with the way things are progressing in medicine at this point in time.

Plus, eradicating something like CP feels like taking a step towards designer babies in a sense. I’m not sure why I can’t put many words to why I feel that way, but it is something I have thought about.

I hope Cerebral Palsy is still around 20, 30, 40, 50, or more years from now. The one thing I do hope for CP in the future is that we have better education and care by the healthcare system that often leaves us looking for somewhere to go or feeling like there’s no place for us.

I don’t think we need to be fixed but we do need to be treated better than we are now.

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

End The Word

I wasn’t going to post this this year given that End The Word has become Spread The Word but I’ve heard the R-word used more frequently than in years past so I just wanted to provide a refresher.

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, 2014

October: A Recap

Can someone please explain to me why life seems to happen in 2 months of the year rather than spread out over the 12 that exist?

No?

OK then.

The month went like this, although nowhere near as linier.

person using macbook

Photo by Burst on Pexels.com

person in blue jeans and pink white converse all star sneakers

Photo by Pixabay on Pexels.com

black and white browsing business coffee

Photo by Pixabay on Pexels.com

blonde hair blur daylight environment

Photo by Sebastian Voortman on Pexels.com

adult art conceptual dark

Photo by Pixabay on Pexels.com

apps black blue blur

Photo by icon0.com on Pexels.com

silhouette photography of group of people jumping during golden time

Photo by Belle Co on Pexels.com

aeroplane air aircraft airplane

Photo by Agata on Pexels.com

apartment bed carpet chair

Photo by Pixabay on Pexels.com

How was your month?

On The ADA Anniversary

This week is the anniversary of the Americans with Disabilities Act (ADA)

I’ve often wondered if the ADA creates more problems than it solves for some, if not all, people with disabilities. It helps A LOT, but it also causes a lot of headaches.

I’ve come to realize however, that the ADA isn’t really for people with disabilities. It’s for the people who can’t even imagine what life is like to live with a disability.

Kind of like how birthday parties really aren’t for the people they’re throne for but for the people that go to them.

Kinda.

Without knowing it I managed to grow up just as the ADA was finding its “sea legs,” which probably explains why so many aspects of my life have become, in a sense, easier even though my mobility had had an endless ebb and flow.

I once heard it said that, “those who don’t need the law are truly freed from the law,” or at least that’s the best my brain remembers it as.

The idea being (I think) that we wouldn’t need as many laws (or any) if everyone operated with the same level of moral decency.

As great of an idea as this is I doubt it will ever happen, ever. Sorry all of you who dream of world peace.

It would be nearly impossible for someone to be able to imagine what it’s like to live with a disability, unless they do in fact live with a disability themselves; besides the fact that imagining it and living it are two different things.

That’s why the ADA is so important.

It gives people a clue into what’s needed in order for people with disabilities. Although it should be pointed out that what’s deemed ADA compliant doesn’t mean it’s accessible for those who need it to be, but it’s better than nothing.

(So if you don’t know anything about the ADA or just want to test yourself feel free to read up)

As much as I (and countless others) benefit from the ADA there always seems to be something new to learn.

Such as how many loopholes there are.

Like the loopholes for already existing buildings and/or religious institutions.

As a Catholic who works in a building that’s been “grandfathered in” (multiple flights of stairs and no elevator) I curse such loopholes often.

It would be nice if there were less (or no) loopholes in the ADA but that’s only a short-term dream. Someday I’d like it if the ADA was an afterthought, making it in a sense unnecessary because access for all is a natural thing.

It seems so wildly unrealistic, but I can hope right?

*A similar version of this post was written on July 22, 2014

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)

#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

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