April: The Recap

I feel like my brain in on a loop similar to Groundhog Day, same thing, just a different day, with the exception that April is not March so I’m back to monthly recaps rather than daily posts.

I was wondering what would happen after making myself write for a month straight, whether it would spark something or just beat what little creativity I had left to death.

It turns out neither one happened, but I’m still sorting out what I’m doing here, and even if I belong here at all.

I used to love blogging. I couldn’t get enough of it whether it be writing or reading blog posts. I still like it these days, but I don’t think it would bother me if some other medium were to take over, whether I would partake in a new medium would be a wait and see type of deal.

A few months ago, as recently as February in fact, I didn’t think I had anything left to say; if I did someone else usually put thoughts similar to my own out on the internet before I could get the words through my fingertips.

It turns out I do have stuff to say, but blogging may not be the best place for it. A podcast or vlog could be a possibility, if I had any interest in the production value either of those would require, which I don’t. In fact, I’m pretty sure I would have a Y0uTube channel by now if I cared enough to learn about the production aspects of it. I do like production, but as soon as editing comes into play, I check out. It’s not for me and I don’t want to look for someone to do it for me, but if someone were to offer, I wouldn’t automatically say no.

So, I’ll continue to write. It just won’t be here, unless it belongs here.

Not one, but two positions I applied for a less than a year ago have reopened. I’m wondering if I should apply again or take the first no as a final no. As I sit here now looking at the exact same requirements I did months ago I can’t say I can see why I didn’t get an offer but I can tell you so much has changed for me, at least mentally, that I’m looking at the same thing fairly differently. However, my brain is still screaming “don’t reapply” because it just seems like a weird thing to do.

I’m wondering, again, what the perfect position would look like for me.

It’s not what I thought it would be if you asked me what it would be when I graduated from high school, or college, or at the end of my volunteer contract.

It isn’t even what I thought it would be at the start of this year, if I’m being completely honest.

It’s not like I don’t have anything in the works. It’s the opposite. I have a lot going on, but it’s all on a timeline that has varying endpoints. Meaning at some point there’s a high likelihood that I’ll have little to nothing to fill my days with, again.

So, I’m doing what every other sane person does, or would do, in my situation. Keep looking for more work, whether it be something else on a timeline or something more long term. It’s quite an experience, one that I keep getting thrown into, and it’s not always positive.

Normally I would take every ouch of bad news and hang onto it for a while. It can take me a few days to “level off,” normally.

But lately?

Every piece of information that is less than 100% awesome I just think, this is taking me to something greater, and I’m totally fine with that, at least right now, in this moment.

It wasn’t easy getting to this place, and I don’t think this feeling will last forever, but I’m going to take full advantage of it while I have it.

 

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)

Cerebral Palsy: Movies & TV

Because I compiled a list of books on Cerebral Palsy, and was somewhat happily surprised, I thought I’d see what was out there in terms of film and TV shows. The search wasn’t as successful as the search for books was, not even close.

There are more than a few reasons why I deemed this venture “less than successful.”
1) Selection is limited, or maybe it’s just not that accessible by easy search terms.
2) I wasn’t always able to determine whether or not the actor was “cripping up or not” without the help of the internet.
3) Inspiration porn.
4) Lack of actual story.
5) Heavy on documentaries.
6) Just plain bad production value.

I didn’t realize that I was going to be so disappointed by the lack of material until I watched a majority of what was available to me. I think it’s because I was so surprised by the book search, I was hoping for similar results.

For the record I typed in “Cerebral Palsy” or “Cerebral Palsy movies” into various outlets and saw what came up, some addressed CP as a direct topic some just had a borderline reference.

Now I’ve talked about disability in entertainment before, but I don’t think I’ve done so directly here so I’ll do that now.

There’s always a big debate over whether or not “cripping up” (an able-bodied person playing disabled) should be acceptable. For a long time, I said the best actor should get the job regardless, however because of the lack of diversity in entertainment I now think “cripping up” is not acceptable.

That’s why I think shows like Speechless & Switched At Birth are so important and a step in the right direction.

But they aren’t perfect.

I don’t think every episode should be centered around disability but there should be some acknowledgment of when a disabled person’s life deviates from the able bodied, like going through an airport, for example.

I also don’t think you should put a disabled person in a role just because. There needs to be a reason for them to be there other than “we need a disabled person.” They should be characters, not props.

Do I really need to do into inspiration porn? There are articles and such all over the internet you don’t need my input other than, it must be stopped.

There are a few documentaries out there on people with CP but many of those aren’t of the best quality or turn into inspiration porn.

So nothing is perfect, and this venture just proves it.

I’ll end my complaining with a few recommendations (again none are perfect, but these top the list of “least offensive”):
The Long Green Line
Margarita With A Straw
Music Within

Spread The Word

Normally the “Spread The Word To End The Word” campaign would be today. But there’s been a change to the campaign. Now it’s Spread The Word: Inclusion.

Now I’m a little skeptical about this chance, it’s the first year so I think there’s some wiggle room on this one.

What does inclusion look like? It depends on who you ask.

2019-01-12

I have to say I agree with Emily and John.

An inclusive environment means giving disabled people a chance to reach for the same standard as the able bodied.

One of the most common assumptions that people made when I told them I was on a swim team was that it was a disability-based team. When I tell them that it’s primarily an able-bodied team, I got asked why I didn’t choose a disabled team.

The answer is simple, they gave me a chance to become a teammate.

I’ve been (and still am) part of 2 teams, one disabled the other able bodied. They both have their benefits and disadvantages but if you get down to membership fees and team rosters, you’ll find my name right up there with the able-bodied, you’ll find my name somewhere in the middle thanks to alphabetical order.

People think being a more inclusive environment means reinventing your current environment. No. It may mean making some changes but they, more than likely, won’t cost as much as you think, if anything at all.

Most of us know what we need to be included.

We just need to be let in the door.

Everyone Needs A Rabbit

There’s a term in swimming called “being a rabbit.” It comes from dog racing, I think. The idea being to have 2 swimmers race each other, making one push the other to be their best.

I never thought I’d ever have a rabbit so forget about being someone’s rabbit.

At least until a few weeks ago……

I had a few pool-mates heading to a big competition and with nothing on my calendar, at that point in time, I was taking it easy focusing more on technique than speed. The coach was trying to get someone to focus when the magic words came out of my mouth.

“Do you want me to be her rabbit?”

It was an idea. I didn’t think anyone would take me up on my offer.

I spent the next hour “playing rabbit,” a position I never thought I’d be in. Needless to say, I probably wasn’t the best rabbit, because I was focused on my own speed rather than the person I was a rabbit for. Normally this would be an ideal situation (I think) but this was one of those rare times when I probably should have stayed a few stokes ahead rather than more than a few yards.

I considered my time as a rabbit as a “one and done” deal, not because I’m probably not the most ideal candidate, but because of the circumstances. Usually I’m preparing for a meet alongside everyone else, and in all likelihood that’s a more probable situation in the future.

Some time later I watched Cody Miller’s vlog where he specifically mentions the need for a any swimmer to have a rabbit:

Everyone does need a rabbit at times, someone to push you when the motivation isn’t there, when the focus isn’t where it should be, when you just need someone to race (or whatever the equivalent happens to be).

Be willing to see the benefits of having a rabbit and be willing to be a rabbit for someone else.

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)

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