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.

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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

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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