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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#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:

 

Get A Job!

At the beginning of my last year of formal education I faced a similar predicament as most of my peers. I had determined pretty quickly that graduate school was not for me; the only post-graduation conclusion I came to faster was religious life was most certainly not for me. I had one choice left.

I needed a job.

A task I failed in such spectacular fashion that it’s only by the Grace of God that I can tell you that there’s hope (and a happy ending) for everybody.

I made the decision to put off applying for jobs until my final semester, something I don’t recommend as a general rule. I knew I was heading into a world of low paying jobs regardless, so why not live in ignorance for a little longer?

I had every intention of going into the entertainment industry, or arts ministry. Neither of which are areas in which your average college career services office can help you with. I think I set foot in career services twice.

Most arts related departments know that they have to fill in the gap. That’s why they have this thing called “lab” or “practicum.” a time when most of the department gets together and discusses work, what you’ve done, what you’re doing, how to do what you want to do. You also spend a lot of time doing seemingly self-centered things, like discussing head-shots and monologue choices (these things do have an actual purpose).

Fall semester of my senior year I had a full load of drama classes. I was also helping put together my classes answer to the Oscars. I was up to my ears in drama, with a capital D. It’s a drama major’s dream, until you’re actually living it.

Living your life at an eleven isn’t all it’s cracked up to be. (Spinal Tap, anyone?)

I decided to put off any auditions or arts related jobs for a while, so I focused on long term service applications, until I printed out a couple. I was finishing my passion project and putting together a production. This “job thing” could wait until after graduation.

Right?

Yes and no.

I think you should know your limits. If you can’t devote adequate time to something you need to let something go. I like having a full plate but I’m not a fan of getting a bigger plate when the one I have is full.

However, my putting things off until I had more time turned into an unintentional gap year; there’s nothing wrong with a gap year, but when you do nothing productive with it you’ve gone from having a full plate to being stuck in a big hole.

I should have taken the advice given to me. I should’ve taken the help that was offered as well. I should’ve taken advantage of the resources around me while I had them.

I should’ve (at the very least) made a resume!

That disability support services office I had a love/hate relationship with? I shouldn’t have had such an “I can do it myself” attitude (emphasis on attitude) when they inquired about my plans for the future.

I went into the job search process assuming everything would all work out, and eventually it did. But people should learn from my missteps.

I should probably also tell you that I’m not that great at interviewing (I’m even worse with auditions) so I could’ve used the extra practice. Yes, I’m saying I should’ve applied for job I didn’t want/didn’t think I’d get just for the interview experience.

Getting a job (& keeping a job) with a disability should be no different than the non-disabled population. Now that I’ve said that, that doesn’t mean that the process is the same.

There are “extras” to consider during the search & application process:
Can I get there?

-If you don’t drive don’t assume that there are transportation options, even if there are they may not be reliable.
Can I perform the duties asked of me with no (or minimal) accommodations? This Includes “other duties as assigned.”

-The ADA outlines reasonable accommodations but I’m leaning “reasonable is up to interpretation. Therefore, look for jobs that keep accommodations to a minimum, as close to none as possible.

Is the workplace accessible for me?

-My current workplace is not accessible for most people with disabilities. When I used a wheelchair full time post-op I had to rely on my coworkers for a lot. We had to set up a mini office downstairs for me to get any work done some days. There are still days when things aren’t accessible for me, but I make do.

Can I handle the workload?

-If you’re prone to fatigue this is something you have to consider. Can you still do your job after a bad night’s sleep? And all that goes along with it?

Is this a job you see yourself in for the long term or the short term?

-If this is a position you see yourself in for the short term don’t stop looking for the long term. That short term may end up being a long one.

Should I disclose my disability?

That’s up to you. There are situations where you should or shouldn’t (as in don’t need to). Don’t lie. Most importantly whatever decision you make don’t let it be motivated by fear.

The ADA has done a lot for people with disabilities but there’s still a long way to go. You may feel like you have to work twice as hard to get half as far as a coworker. That may be true but you’ll be making it easier for the next person who comes in the door.

A similar version of this post first appeared on an old blog on March 5, 2013

 

Proof Of Disability

I’m one of those lucky individuals whose state issued identification and handicapped parking permit expire at the same time.

I know it happens, so I knew it was going to happen to me, eventually.

I wouldn’t have to do this if the state had kept their policy of lifetime handicapped parking permits.

What’s that they say about bad apples?

Anyway, back to the paperwork……

Naturally one can not just get another parking permit at will, because that would be just too easy, and make too much sense.

Instead I have to prove that I am still disabled.

Stupid, yes. But not the stupidest part.

Knowing about the paperwork I tried to plan ahead, tried being the important word here.

I wanted to bring it to my last PM&R appointment, but it was too early, you know because disability, even permeant ones, come with a timeline.

So that leaves me with one viable option, the fax machine, and hope nothing lapses.

Why are we still using fax machines?

Is it wrong to think that life would be just a little bit easier for everyone if we eliminated fax machines?

I understand why the policy change had to happen, but I also know it’s ridiculous. There’s no way I’m going to become able-bodied, no matter how hard I work at trying to change it (if I really wanted to).

Bottom line: having to prove disability is necessary, having to prove it again and again is redundant and pretty pointless.

Think for a minute of the life cycle of paperwork:
-I take it, fill it out and send it to my doctor
-My doctor’s assistant, or someone else, passes it on to my doctor
-My doctor has to take time out of his schedule to fill out said paperwork
-My doctor’s assistant, or someone else, sends it back to me.
-I receive the paperwork, review it, and send it to the DMV
-The DMV reviews the paperwork and sends me a new parking permit, that is if they don’t loose the paperwork or forgets to mail my new permit

It’s 3 pieces of paper that could eat up hours in the day of multiple people, time that could probably be spend doing other, and possibly better, things; like things that affect everyone, not just those with disabilities.

I understand the need to prove my disability, because the scams run wide and deep, but do I really have to keep proving it?

Labeled

The concept of labeling can be a complicated debate especially when you have a disability. For a long time, I avoided being labeled like the plague, partly because I wanted to avoid any discussion of my disability at all costs. My thoughts on labeling have changed a bit since then (as you’ll see from the rest of this post). All labels have their place but I wonder if we’ve gone too far in both directions, yes at the same time, meaning we want to label everything and we avoid labeling so much that it’s almost ridiculous, and I wonder if it’s becoming dangerous.

_____________________________________

Do you ever find yourself being shoved into a label that just doesn’t fit?

Do you want the short answer to that question or the long one?
The short answer is…….
Y-E-S!

The long answer goes something like this……
Here’s just a list of labels that have been applied to me:
Cerebral Palsy, Palsified, CP-er (which I hate), Premature, Special Needs, Special Ed, Disabled, Handicapped, Crippled, Dyslexic, Stupid, Slow, Dumb, Learning Disabled,
Different thinker, Adapter, Creative, Problem solver, Easily distracted, Attention Deficit Disorder, Bouncer-backer, Inspiration, Survivor, Thriver, Independent, Stubborn, Pigheaded, Closed off, Loaner, Anti-Social, Social Butterfly, Fast talker, Quiet, Courageous, Deep thinker, Over emotional, Latch-key kid, Damaged goods, Teacher,
Motivation, Friend, Enemy, Nice, Hard ass, Sweet, Sassy, Tree hugger, Hippy, Weird,
Conservative, Driven, Closed minded, Free thinker, Catholic, Addict, Artistic, Heathen,
Atheist, Non denominational, Christian, Miracle, Scattered, Fighter, Free spirit, “Mom,” Flighty, Lover, Hater, Lazy, Boring, Amazing, Spastic, Spaz, Athlete, Introvert, Extravert, Warm hearted, Cold blooded, Caring, Mess, Demented, Retarded, Big mouth, Planner, Over reactor, Disorganized, Volunteer, Recruiter, Person
…….and on and on and on

These are just a few labels I’ve been given in my lifetime. Do I feel like any of them fit me? Not really. No. None of them “fit” me. I feel like I get forced into at least one of these labels at least once a day. Other people have given them to me and force me into them, but sometimes I force myself into them for lack of knowing what else to do. No matter how much I don’t like labels they do help make things easier. I find myself relying on them in new situations or when I find myself too frustrated to be able to explain things to the best of my ability.

My favorite saying for a long time was “Label jars, not people.” It’s still a favorite but I don’t rely on it for wisdom as much as I use to. It was a title I used for an old blog, now I rarely think about it.

Even though it is a statement I rarely use anymore I still believe in it.

Things need labels.
People do not.
People are so much more than any label can describe.
If you need to label someone than you’re showing off your insecurities.
If you want to label someone label yourself, just know you’re selling yourself short by doing so.

*A similar version of this post was published on November 4, 2008

A Deck Of Cards

I was sitting in a prospective student orientation hearing school statistics. In an effort to create a diverse school environment administrators had percentages they tried to maintain. It didn’t take me long to figure out my admission would be a slam dunk.

And it was. I was admitted; attending was another story.

It’s my first memory of thinking that my “different-ness” could be an asset.

It took me a few years to realize that this was indeed a disturbing thought for a 4th grader to have. That doesn’t mean that there were/are situations where this fact holds true.

There are times when I’ve tried to use having a disability to my advantage. Once you let the genie out of the bottle there’s no getting it back in, so you have to be careful..

 Life consists not in holding good cards but in playing those you hold well.”–Josh Billings

 Some time during high school I realized that my life was like a deck of cards. Sometimes my disability can be my ace in the hole. Sometimes it’s a joke(r). Other times it’s just another card in the deck.

I’d like to say that most often it’s just another card in the deck. Honestly that’s what I’d prefer. However that’s not how the world works, at least not now, but maybe someday.

I don’t walk around highlighting the fact that I have Cerebral Palsy. Just uttering the words “Cerebral Palsy” leaves people dazed and confused. It does open the door for educational moments but most of the time I don’t have the time, or the energy.

When it comes to day to day living I keep things as general as possible, but it’s pretty obvious I’m in the “otherwise abled” category. I prefer to see myself as just another one of “the guys” for a lot of reasons; a big one being I don’t want to hold my disability over people’s heads.

Think of “The Boy Who Cried Wolf” story we’ve all heard. If I brought up having Cerebral Palsy all the time what would that do? It would raise awareness, but would that be for a greater good? I doubt it.

There have been times when I’ve been looking for employment when I wondered if full disclosure would actually work in my favor. I mean companies put disclosures at the end of applications for a reason (& I’m sure they have quotas to fill, just like that school).

There have been times when I really wanted “that” job so the thought of using my different-ness as an asset crossed my mind. But how does someone do that without the potential for backfire?

I’d rather be the best one for the job when compared to other candidates. Not the candidate that filled a quota. I really don’t want to be the person who can’t do a job that everyone knows was a pity hire. (I’d rather not have a job if that’s how I get them)

Having a disability does leave room for other abilities to develop. It’s one of the best reasons to have a disability, in my opinion. As tempting as it is to broadcast my disabilities/abilities for my own advantage, it’s more important to show what I can do and let the work speak for itself.

Life is a deck of cards. Play them well.

*A similar version of this post was written on March 6, 2013

The Matter Of Privacy

Disclosure is a common topic for people with disabilities, so much so that I took a shot at giving my point of view on the subject. But there’s another subject that doesn’t get the attention it deserves. So much so that it’s taken me months of looking at a tweet to formulate some sort of thought process.

 

Privacy is an odd thing when you have a disability, practically one like Cerebral Palsy that can have more variations than can fit into a textbook.

People want to talk to you, and ask you all kinds of questions. Questions they wouldn’t think of asking anyone else in the same manner.

People want to see you, in some state of undressed, yet still somehow dressed. But no one would ever expect you to go out in public like that, and if you did there’d be a problem or two, or twelve.

I won’t say privacy goes right out the window, but it does have a drastically different definition, especially if you have any understanding of HIPAA.

Being an advocate means giving up more of that privacy for the sake of others who don’t want to or don’t feel comfortable doing so.

I understand that people don’t like to discuss certain topics. I’m no exception to that statement, but I do discuss most of those certain topics because there are numerous stigmas that need to end, particularly around more personal issues, like health, relationships, sex, romance, healthcare (to name some examples).

It shouldn’t be anyone’s business when I started puberty, again another example, but it’s not something that’s generally discussed in the CP community, unless it’s related to skeletal maturity, but even then, the relation to skeletal maturity is left out of the conversation more than it’s included.

I know people want to know things, they have questions. I know because I had them too, I still have questions in some cases.

Privacy is a weird subject when you have Cerebral Palsy because so much of it is stripped from you at a young age, sometimes you’re so young you have no idea that you have a choice when it comes to what you want to be private and what you’re willing to share.

There’s also the matter of topics just not being discussed, like those I’ve mentioned, because of the stigmas of having a disability. We’re human, and not human at the same time. So, there are topics that you don’t feel like you can talk about, or even research without raising suspicion.

I sacrifice my personal right to privacy in the hopes that it helps others, and that maybe someday, sooner rather than later, no one will have to anymore, myself included.

 

No Hope For A Cure

I don’t hope for a cure for Cerebral Palsy. I’m not saying that there is no hope, that one can’t/won’t be found. I don’t hope for a cure because I like who I am. Chances are there will be a cure found at some point, and probably sooner than we think. And that’s O.K, I guess.

I’ve always known I have Cerebral Palsy. I didn’t find out what that in fact means, for real, until a few years ago. I’ve always been uncomfortable with the idea of being healed or cured for as long as I can remember.

It always threw me off when teachers and other parents would call me a wonderful child and then they’d turn around and suggest to my parents that they should take me to some kind of healer. If I was so wonderful than why did I need to be healed? I understand that things aren’t so black and white now, but these were not conversations to be had in front of a child.

Do you know the story in the Bible when a man goes up to Jesus to be healed and people ask him, “How has he or his parents sinned for this to happen?” (That’s the story more or less). I’m not for defacing books, but I’ve always wanted to rip that story out and act like it was never there to begin with. I get the point of the parable; it just dances on my last nerve when I hear it.

God, or whatever you believe in or not, made me this way. God doesn’t make mistakes, right? So what’s to heal or cure?

There were difficult times in my life, probably more than most people have, if you add in all the medical stuff. Do most people feel bad that I had to go through it and I’ll probably continue to? Sure. But here’s what none of those individuals will ever understand, I wouldn’t change I thing for one simple reason.

I am who I am today and will continue to be because of how I’ve lived.

As Jack Morris once said, “Our human task, if you like, is to not flee from the ill-being but to transform it.”

Here’s an idea I’ve had recently that you may have never considered. I know what my shortcomings are, well most of them, without having to think about it too much. I have a disability called Cerebral Palsy therefore my balance isn’t awesome, anything requiring that I have great balance isn’t for me. Neither is anything that requires me to be on my feet eight plus hours a day (that’s a mistake you only make once).

This self-actualization extends to what I’m good at as well. Having shortcomings gives you the ability to develop other skills that make you stand out.

Some people spend most of their lives figuring out what they’re not good at and vice versa. So in this aspect I think I have a leg up on things.

Growing up I used to wish that I was more like the other kids, at first. But once I thought about it the idea scared me. I’ve known no other life. The unknowns of what my life could be scare me more than the struggling I know I’ll endure. I wonder if I’d settle for less if things came easier, something tells me I would have.

The only regret I do have, if I have to name one is not realizing I had a learning disability until I was almost a college graduate. I wish I had known it sooner so I could’ve learned coping skills for it earlier on. I can’t really attribute it to having Cerebral Palsy; although it is true that learning disabilities are more common in people with CP it’s not a hard and fast rule.

I don’t hope for a cure because I don’t need to be cured. I am who I am and that’s who I’m meant to be. It makes no sense to hope for something you don’t want. I have other dreams to hope for so I’ll stick to those.

*A similar version of this post first appeared on an old blog on March 27, 2013

The Matter Of Disclosure

What if you can’t keep your disability a secret (or what if you don’t feel comfortable doing so)? When should you disclose that you have a disability and how?

It can be challenging, but not impossible.

I’m no disclosure expert but I do have thoughts on the subject. Thanks to a few personal experiences, both positive and negative.

I feel compelled to reiterate that these are my personal thoughts and I do not claim to represent anyone other than myself.

There are two questions you should ask yourself when it comes to disclosure. The first is: should I disclose my disability?

If you can answer “no” then you can stop reading and go on with your day. Just think about what the consequences of that “no” could entail. Question 1.2: Are you comfortable with the potential consequences? If your answer is still “no” then, have a nice day.

If your answer to the first question is “yes” then proceed to the next question which is: when (or how) should I disclose?

School: I’ve done both so obviously I’ve seen the positives and negatives of both sides fist hand. The most important thing to know is there are rules/laws out there that can help or hurt you at every stage. Know them before hand, even if using them isn’t part of your plan, because they may have to become part of the plan.

Speaking strictly about college (because I completed basic education in the dark ages) the important thing to remember is services are available but it’s up to you to ask for them (and then make the effort to get them). No one is going to come to you and ask you if you need additional assistance or resources. You’re considered to be an adult so they’re going to treat you like one. One of the biggest benefits to college is that you can have more control over who you disclose to. You can disclose as much or as little as you want as well. But again, make sure you’ve thought about the consequences to not disclosing as much as disclosing.

My suggestion is that you disclose to the disability services office and develop a relationship with them. They can be in your corner regardless of whether or not you disclose to individual professors (which I have both done and not done as well).

Work: Do as much research as you can before you accept a position. You need to be confident that you’re the best person for the job before you can expect others to see you in the same light. I’ve not disclosed my disability more than I’ve disclosed it in the workplace but it’s pretty obvious that I have limitations. You’d have to be blind to not pick up on it. In the workplace I think it’s more important how and when you disclose rather than the actual disclosure. If you bring it up in the interview process be cleaver and casual about it.

Point out what you bring to the table more than the potential barriers; which is basically the same advice you’d give an able-bodied person (I love when life works out like that).

Dating/Relationships: Admittedly this isn’t my most favorite subject but it’s a common occurrence in everyday life so I’ll bite the bullet.

My advice for disclosing while dating or looking to date is similar to my workplace advice. It’s more a matter of how and when you disclose rather than if you should or shouldn’t.

If you’re looking to meet someone online then keep things close to the vest for a while. If you blast it all over your profile then you’ll probably turn people off, or worse attract nothing but creepers and devotees. My only exception to this rule is when it comes to profile pictures; if you feel comfortable showing off your wheelchair or other assistive device in a picture than go for it. In fact it can, for lack of a better term, take some of the disclosure pressure off of you; if they have questions than you can answer them without worrying about whether you’ll scare them off or not.

If you’re planning on meeting in person and you haven’t disclosed then it would be a good idea to say something before meeting, especially if you can’t really hide your disability. You don’t want to seem shady for keeping secrets (from the other person’s prospective). One you’ve met face to face you can disclose as much or as little as you want, just be open to their questions.

If you’re meeting in real life as opposed to online then trust your instincts, as you would at the beginning of any other relationship.

As for disclosing to friends, very few of my friends knew of my textbook diagnosis until I became more involved in the disability community and advocacy, which is a pretty recent development given the length of some friendships. It wasn’t really something I was hiding. The fact that I’m not the same as they are physically is pretty obvious so I can’t exactly hide it, even if I wanted to; if they asked me what my disability was or if it was somehow relevant to group conversation than I said it.

The most important thing to remember about disclosure is that there is no one size fits all answer. Ask for advice because there’s always going to be someone who’s been there before you, but when it comes down to it you just need to listen to your gut. And if someone’s not going to like you (or whatever else) based on your disability then turn around and walk right out the door. You’re better off without people like that in your life no matter the circumstance.

*A similar version of this post was published previously on June 6, 2014