BADD ’17: In Defense Of The Able-Bodied

I’ve wanted to write this post for a long time, but it’s one of those “tread lightly” things, and that’s not my best skill, so I’ve put it off, but I think today is the day.

I’ve written before on whether or not it’s possible for those with disabilities to be ableist towards others with disabilities. While it’s a divisive topic I think it’s an important one to acknowledge and discuss in certain situations.

As excited as I was to join a swim team I knew I wanted to continue when the season was over, which ended up not being in the cards for a few reasons. I also knew the season was really just a start and I needed to find the next step.

I asked people for advice, people who have been around and faced some of the same challenges, but I didn’t exactly go how I thought.

Before I even made a viable connection, people tried to talk me out of what I had in mind.

It didn’t make sense to me, if the end goal was to create a more inclusive environment what was so bad about my plan?

I showed up to my 1st masters swim practice with extreme caution. I wasn’t sure it was going to work, especially after watching the junior team practice, but I needed to give it a try. I had 1 private session with a coach a few months before and I was still reaping the benefits. If I backed out of a chance at team practices I would regret it.

It was a hard practice but everyone seemed welcoming. I’ve kept a list of goals since I started swimming again. I had been steadily chipped away at them but things stalled, until this practice. I ended up crossing off almost everything else on the list.

Then nearly everyone who encouraged me to seek out other opportunities tried to talk me out of it, even when I didn’t ask for their opinion.

It wasn’t good for me to leave people “who are like me” or “could understand someone like me,” at least according to them.

I understand their concern, at least usually, but what confused me was these comments were coming from people actively working towards more inclusive sports. So, why shouldn’t I join an able-bodied team? Especially if it’s a better fit, in almost every way.

I know there are those out there who feel that I’m betraying “my people” but if the ultimate goal is for people with disabilities to be seen as equals to the able-bodied community so we need to become part of the able-bodied community whenever an ideal situation presents itself.

At least that’s what I think.

I’m not going to say that the change has been seamless. It’s been full of adjustments, not so great practices, and at times downright culture shock.

But I can say without a doubt that I wouldn’t be where I am today if I hadn’t made the change.

And that’s made me think a lot more about inclusion.

When we see a chance for inclusion we should take it, we need to take it. It doesn’t always come with the betrayal of the disability community, and if we keep seeing it that way then we probably should change our approach.

Inclusion isn’t a one-sided issue, we can’t just stand around and wait for people to include us. We can’t just yell, and bitch, and moan about it either, there has to be some meaningful effort on our part, and it doesn’t have to be some grand gesture either.

Sometimes “just” showing up and seeing what could happen is enough.

Blogging Against Disablism Day, May 1st 2017

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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, 2014

Am I So Different Now?

One of the best things about relaunching a blog (and pulling down another one) is the ability to not only look back on previous material but also edit it if it feels right. The post I’m sharing is one of the 1st I wrote and kept (there are countless others that hopefully will never be found again). I was planning on editing it so it would make more sense for here and now. After reading it fully, I decided not to. This was one of the first (and at the time few) posts I wrote about disability.
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Last year I got my first wheelchair. It wasn’t my first first but it was the first one built specifically for me. I was so excited the day my rep brought it to my house I practically knocked him over at the door.

As excited as I was to have a wheelchair I could call mine I needed to learn how to use a piece of equipment that was meant for me. Not only did I need to learn how to use something that was meant for me. I needed to learn how to use it correctly, and in the manner, that it was meant to be used. All of this is more involved than you would think. My chair is smaller than any chair I’ve had before, even though I’m bigger. Aerodynamics is a great thing but it can also bite you in the butt.

To help my chair and I become more of a team I went back to P.T. for mobility training. After all, the main purpose of ordering a wheelchair for me was to increase mobility. I couldn’t very well accomplish that without knowing how to get around in a non-wheelchair accessible world in a wheelchair. I spent hours learning how to go up and down curbs (safely), how to propel myself up steep ramps, if you can think of it we probably at least discussed whether I should learn another skill set or not.

Another important thing I had to do was strength training. If you’ve seen a full picture of me, or know me in person, you can see that my upper body is more than twice as strong as my lower body so you wouldn’t think strength training would be something I’d have to be concerned with, as far as my upper body is in question. The truth is the muscles you need to get yourself up a curb are the very ones that are underdeveloped in my body. I don’t know about you, but I found it to be kind of funny.

Not only did I learn proper wheelchair mobility. I learned to hate a completely new set of gym equipment; the arm bike can bite me.

The extra P.T. sessions weren’t enough. It’s one thing to maneuver a P.T. curb. The real world provides extra challenges that P.T. can’t prepare you for (sorry to all the recent spinal cord injury people out there who might be reading this). So I had to enlist someone else to help me out, so I wouldn’t flip myself over into the street.

I’m getting to my actual point now, I promise.

I went on a “walk” with my mom down the street. We live in a quiet neighborhood, at least now it is, so worrying about running into someone I knew was going to be extremely rare. It’s mainly why I agreed to go on a walk in the first place, until that day I had just practiced around the rehab where things wouldn’t seem so out of place. Shallow, yes, but everyone has a shallow moment now and then, even if I had been waiting to have my own wheelchair for who knows how long. It’s an adjustment. I still have moments these days.

Not too long into our walk I see someone I think I know, but she ran right past us without a second glance, so I let it go. Not too much longer after that the same person comes back down the street, walking this time. I quickly decide not to say anything. My mom doesn’t either because she doesn’t remember who’s walking toward us, thank God because she has a knack for calling attention to situations when I’d rather just ignore everything going on, like most mothers.

Unfortunately, the person walking towards us realizes she knows me and by the end of our interaction I’m very angry and wishing either she or I were dead so the whole thing would never have a chance of happening again.

This person I ran into happens to be the mother of one of my best friends in grade school. My weekends were either spent at her house or her daughter, my friend, was at my dad’s house. Therefore, my mother does not know her well. They rarely crossed paths, almost never.

What shocked me about our short reconnect was that she talked to my mother rather than me. My mother. She doesn’t even know my mother’s name! Yet she talked exclusively to my mother and she doesn’t even know my mother’s name. So, that last statement isn’t exactly true.
She did talk to me. Like I was a toddler!

Just because I’m lower than your eye level doesn’t mean my IQ has gotten any lower. If you know me talk to ME, not the person I’m with because you think I’m somehow damaged and will interpret your clearly lacking social skills as acceptable.

She then goes on to tell me that her daughter, my former friend, graduated from a very prestigious school with a very high paying degree and how she’s living in New York doing paralegal work, not her field of study, because she’s “trying to find herself.” She then adds that my former friend is also living in one of the best areas of New York City in penthouse with a friend, for free, because this friend is so filthy rich her parents pay for everything. She never thought about asking me, or my mother for that matter, what I’d been up to. She never even asked the customary “How are you?” anywhere in the conversation.

This was when I finally got why my mom was, and still is, against playgroups. Or at least I finally understood her theory on playgroups and why she doesn’t like them. Who the hell wants to deal with all that bragging from people who think you’re less than they are?

Normally this wouldn’t bother me so much. I’m use to people treating me differently when I’m using a wheelchair and when I’m walking around. It’s become water off a duck to me. I just let it roll of my back. People are too ignorant to make the effort worth much. Although rolling over their foot is always an option.

What made this time different was that this was the same person that treated me like I was an adult when I was 9. Now that I’m 23, at the time of the event, she treats me like I’m 2. She knows I have a brain in my head and that I’m capable of expressing myself. She was even the one who pointed out to my father that I needed more structure and stimulation in my life because of my critical thinking skills. She also made sure my dad got me interested in activities higher than my grade level because I needed it to feel good about myself. But on this one day she forgot everything she ever told my dad, and me. She completely made me think twice about who I thought she was, and under minded my respect for her.

I still have a bug in my underwear about it, as you can probably tell.

I was so offended that I had to go home and be alone. If I had talked to anybody after this conversation I would’ve taken out my frustrations on someone who had nothing to do with why I was so mad and didn’t deserve to have to deal with my wrath because of it.

Is it society’s perception about people with disabilities that makes almost everyone act this way? What’s it going to take for people to see that people with disabilities are just as much individuals as people without disabilities?

I am not my disability.
I am not your idea of my disability.
I am a person.
See me as a person.
Treat me like a person

*A similar version of this post was written on November 2, 2008

I’m participating in WEGO Health’s Health Activist Writer’s Month Challenge. If you want to find out more about Health Activist Writer’s Month Challenge visit their blog, Facebook, Twitter. You can find more posts by searching #HAWMC.

 

Asset Or Barrier?

Not too long after graduation I went to New York City for an interview. It was one of the hottest days, if not the hottest, I’ve ever spent in the city, ever. Typically, I would’ve stayed home blasting the air conditioning, but I had ulterior motive.

I wanted a position.

I found a small volunteer program that I wanted to be a part of and they had invited me to the city for an interview. I decided to ask my best friend to come with me and make a day out of the whole thing, because spending 4 hours on a train for a 1-hour interview didn’t make much sense.

My interview was with 3 people, the recruiter and 2 of the people I would be working with if I was accepted, and it lasted over 2 hours.

I had this thing in the bag. Why else would they keep me for 2 hours if there wasn’t some interest?

A week went by and there was no news. Then there was a rejection letter waiting for me, a hard copy, not the email I was expecting.

It took me a while to figure out where things went south. It took me even longer to know that there was nothing I could’ve done to change the outcome.

During the interview the recruiter kept mentioning how hard it would be to insure me due to my disability. I kept reassuring him that it would be illegal if an insurance company refused to insure me.

Something tells me that this was the reason why I didn’t get the position, although one can never be completely certain.

Over a year later I was sitting in a mentor’s office with my area director for the first of three area director visits, a requirement for the service program that welcomed me with open arms.

During that meeting I remembered that first interview. I saw then what a bad fit that would’ve been for me. I was exactly where I needed to be, even if the journey there wasn’t what I had in mind.

For a long time, I saw having Cerebral Palsy as a barrier that I had to overcome (and even hide) when I should’ve seen it as an asset; it took meeting with my mentor and area director to realize that it could be considered an asset, because that’s what they saw it as.

It’s easy to see CP as a constant barrier. 90% of the focus is on the various potential and actual barriers of living with CP. It’s easy to go with the flow and fall into the negative trap with the majority.

Instead of focusing on what you can’t do or won’t be able to do, shift the focus to the potential gifts of CP.  Everyone has limitations AND gifts, CP or no CP so you shouldn’t use CP as an excuse.

Don’t tell people what you can’t do, tell them what you can do, and then show it.

Be honest about your limitations (but don’t downplay them) and highlight your strengths.

Life is too short to waste time trying to please people who see you (or any part of you) as a hindrance.

Surround yourself with people who see you as an asset, not a barrier than needs to be overcome. They’ll make you a better person and you’ll make them better people.

More importantly, see yourself as a valuable asset because that’s what you are.

*A similar version of this post first appeared on an old blog on March 19, 2014

BADD ’16: Ablesim In Social Media

Today is Blogging Against Disablism Day. Blogging Against Disablism Day

I remember one of the first things I learned about the internet was don’t click on banner ads because most of them were viruses that could destroy your computer. As a result, it takes a lot to get me to even glance at an ad anywhere on the internet.

Every couple of weeks something happens to my computer, or rather the internet.
It thinks I speak Spanish.

I don’t know where or rather how it comes to this conclusion. I took Spanish for years in school but I can only remember a handful of words, none of which can be put together to form a coherent sentence.

I know people are worried that the data miners will find out too much about them from their social media habits. I have the same concerns; however, I’d need the internet to get something remotely right before I get that concerned.

In addition to thinking I speak Spanish the internet also thinks I use catheters (among other things) and want to sue people over the fact that I’m disabled.

That last one has made me change my social media engagement practices.

I realized that not paying attention to ads I am being complacent in what people assume I feel about being disabled. Yes, it would be nice to have more money at my disposal but that would mean stating that I think it’s wrong that I have a disability.

I’m sure whatever algorithms used pick up on the fact that I write about disability, and not being human don’t go much further than that. Still nearly 100% of the ads I see portray a negative view of disability.

Last week I started to not only look at the ads in my news feeds but do something about them too.

I’ve alternated between reporting “this ad is not relevant to me” and “this ad is offensive.”

Because 99% of them are not relevant to me, but they could be relevant to someone else.

I want to label all of them offensive because they’re offensive to me, but I admit I may be slightly oversensitive given that I’ve gone to paying attention to virtually none of it to all of it in the span of a day.

The internet is a powerful tool, it provides so much good to everyone who has access to it, but it also provides a lot of bad (and/or useless) information. Anyone can say anything they want and they can get away with it.

What does this mean for the disability community?

It means that ableism can come from anywhere, obviously.

It’s a good thing really. Not that ableism is ever a good thing but it gives advocates, like myself, talking points we might not have thought of if it wasn’t for things that came across our path that we didn’t agree with.

For every 1 ableist item we see we should come up with at least 2 disability items to highlight the positives of having a disability. The disability community may not have the money but we have the numbers, and more are joining the community every day.

For example, (and this is just one of the many examples obviously) the parents of the newly diagnosed child should be able to sit down at their computer and be able to find the good things about being disabled alongside some of the harsh realities. Because being disabled isn’t all doom and gloom, sadness and pity, or worthlessness or being less than.

Would I like ableism to be a thing of the past? Absolutely, but the world is full of ignorant people so, although it may seem like a pipedream now that doesn’t mean it has to be one in the future.

I’ll keep doing my part in small ways, big ways, and every way in-between.

Now about the internet thinking I can speak Spanish thing………

Blogging Against Disablism Day, May 1st 2016

When Cute Isn’t A Compliment

I’ve often wondered if people with disabilities are more likely to be extroverts or introverts because I like being by myself. It’s true I’m an only child so I’m used to being alone. I’m also used to being stared at by passersby, so much so that it’s really easy to ignore, and think I’m in my own world.

I hate getting up early but I like getting places early (or late at night) to have the luxury of interacting with as few people as possible. I don’t hate people but I certainly have a limit, and it’s about the time when people I don’t know outnumber the people I do know in any given space.

There’s this thing that happens when you have a visible disability, people feel that they can come and talk to you for any reason at all (it has it’s good and bad points).

Then there’s another thing that happens, you feel like you’re forced into phases.

For me both of these things have a lot to do with being called “cute.”

In my 3+ decades on this earth I have never been called, attractive, pretty, or beautiful (by anyone outside of my family). I’m always “cute,” and although it’s usually well meaning (I hope) it gets tiring after a while, especially when a compliment is about you but not directed towards to you.

There’s this lady in particular that comes to mind now when I think about being called cute, and why I don’t like it, and how it comes off as insulting.

I see this lady almost weekly in the locker room, once I saw her in the parking lot and didn’t get out of the car until she was in her car, and it’s like a scene out of Groundhog Day.

The first time was nothing unusual, although rude. I had gone into the bathroom stall and I heard her ask my mother if I was her daughter and that I was cute.

The next time we saw her she repeated her sentiment, except this time I was in front of her and she didn’t talk to me. Instead she spoke only to my mother and only smiled at me when my mother told her how old I am.

The next week I saw her and tried to avoid eye contact. I was wearing a new suit and I knew it was highly likely that I’d attract her attention. She did talk to me, but like I was a toddler, telling me that my suit was “very pretty” and getting into my personal space. In fact, if I didn’t back up (another benefit of using a wheelchair) she would’ve touched me, which is never OK. The talking is one “no” the near touching is another “no.”

This lady isn’t the only one who has ever treated me like this, especially lately, but she’s one of the not-so-few that stands out the most.

Her, and being picked up, literally, by an associate. As in “I bet I can pick you up” .5 seconds later I’m in midair.

One incident really has nothing to do with another, other than the being treated as “the other.” Because when you think about it would any of this have happened if I were able bodied? Maybe, but unlikely.

Which led me to think about how I’ve been referred to over the years. I can’t ever remember being called attractive, or beautiful, or pretty, or anything else. Then I pretty much ranted for days on the subject.

I won’t go as far as to say that I live for the day when someone calls me something other than cute. My worth isn’t solely based on what others think of me, especially people I don’t know well enough to trust their opinion. But cute isn’t a compliment when you’re hearing the same thing, and in the same way, in your 30s as you did at 3.

At some point “cute” isn’t as much of a compliment anymore (and someone in their 30s is well past that point, if you ask me).

What Is Cerebral Palsy Anyway: A Review

Cerebral Palsy Awareness Month is drawing to a close. Tomorrow focus will shift to other topics, diseases, and getting taxes done (among other things). To be honest I can’t wait, every year I think blogging for so long on one topic I know so well will be easier than the year before. It doesn’t get easier; it just gets different.

This month didn’t go how I thought it would. But when does my life go exactly how I planned? So there wasn’t as much new content as I had planned on nor did I cover all the topics I wanted to but I had plenty of content to repost, and I have a few ideas to develop for later on.

The month may be over but that doesn’t mean Cerebral Palsy goes away until next March. It still effects people every day so the need for greater awareness should happen every day. So I’ll still be here doing my part and hoping you’ll do the same.

If you have any questions or topic suggestions, please be in touch. I try to cover a variety of topics as efficiently as possible but sometimes I don’t cover something as much as someone would like, or I miss it totally.

This Month’s Posts:

What Is Cerebral Palsy Anyway?
End The Word
Put A Label On It
What The GMFCS?
SDR: Thoughts Almost 30 Years Later
Why I: Use A Wheelchair
Wheels Of Their Own
Being Special
The Letters
From Here To There
Standing Is Stupid
Let’s Get Spiritual
It’s Not Easy Being Green
Of Malpractice & Men
Practice Makes Almost Perfect
Things That Go Jump In The Night
No Hope For A Cure
The Difference Between Want & Can
Cerebral Palsy Awareness Day
Suffering, Cerebral Palsy & The Media
Illness & Cerebral Palsy
Thoughts On Doctors

Relevant Posts From Last Year:
Cerebral Palsy Awareness Month posts for 2015
HAWMC posts for 2015

Suffering, Cerebral Palsy & The Media

There’s a common, and undying, misconception that everyone with a disability suffers daily and suffers greatly. I don’t know when or how it started but I wish it wouldn’t be such a big focal point. I even took a class on the Catholic understanding of suffering in an effort to understand something about why suffering is such a focus for people.

And I have to tell you I just don’t get it, from the point of the sufferer or the observer of suffering, and I’ve been firmly planted on both sides, sometimes simultaneously.

One of the biggest things that annoys people in the CP community is that almost all press we receive starts with “suffers from Cerebral Palsy” or “has overcome Cerebral Palsy.” Now I can’t speak for everyone, although I’m not the first person to say this, but I do not suffer from Cerebral Palsy.

Yes, there are days when I am in constant pain, but I cannot call that suffering. Pain can be a cause of suffering but I wouldn’t go as far as to say this is the case here.

I’ve heard it said, I’ve also read it and said it, that “A disability doesn’t make someone feel disabled, the fact that no one thought to build a ramp does.”

Just what does that mean exactly?

Simply, or maybe not so, disability often it is not the disability itself that causes suffering. It’s other people’s perception of disability that creates the suffering.

I suffer (and so does the rest of the CP community) when people portray us as suffering. It’s not true for one thing and the fact that it’s not true just feeds into the misconceptions the able-bodied community has of the disability community.

Then there’s the idea that we can overcome Cerebral Palsy. No, Cerebral Palsy is part of who we are. You can’t overcome part of who you are, just like you can’t overcome having a certain hair or eye color. You can cover it up but it’s still there underneath.

The other thing is I don’t want to overcome who I am. Wanting to overcome who I am leads people to think that there’s something wrong with who I am and there isn’t. Granted that’s just my opinion.

I know I complain a lot about Cerebral Palsy not getting enough press so you would think I’d be happy to take what I can get.

But I’d rather the media get their facts straight before putting individuals with Cerebral Palsy into the spotlight.

We get so little attention that when we do it can be frustrating when what’s deemed as “facts” aren’t. We’re getting the attention but it’s not in the best way. Because contrary to what so many people seem to think now not all press is good press.

What I’d like to see is for more articles, videos, news stories, etc. telling the real story of those living with Cerebral Palsy. We’re just like normal able-bodied people achieving our goals and dreams, not suffering, not overcoming in spite of our disability.

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

Standing Is Stupid

Being the occasional reader of What Do You Do, Dear? I came across a poem by Shel Silverstein, not surprising since Mary Evelyn is an elementary school librarian, that made me laugh and shake my head in agreement. I don’t remember if I ever heard or read it during my early school days, but even if I did I think it takes on a different meaning for me now.

It goes….

“Standing is stupid,
Crawling’s a curse,
Skipping is silly,
Walking is worse.
Hopping is hopeless,
Jumping’s a chore,
Sitting is senseless,
Leaning’s a bore.
Running’s ridiculous,
Jogging’s insane-
Guess I’ll go upstairs and
Lie down again.”
Shel Silverstein, A Light in the Attic

I don’t know why, or when it happened, but for some reason standing, and walking even more so, became “the line in the sand” for people with Cerebral Palsy but it is.

I regularly get emails asking if I can walk, or asking at what age I learned to walk, or if I think someone else (often whom I’ve never met) will ever walk.

I am not a doctor, although I’ve always thought it would be cool to play one on TV.

I need to also tell you that doctors, although smart, do not know everything; nor can they inconclusively predict the future. Plus, technology and medicine is growing so much more quickly than it did even just 5 years ago, even I have trouble accepting a conclusive prognosis of anything.

I’m not saying that if you’re told your child or yourself will never walk to accept that and move on. It takes a lot to learn to walk when you have a condition that makes nero-muscular coordination difficult, so not only does it take a lot of work it takes time and money and often it does take a village. I’m not saying it’s not worth the effort but it will come with some sacrifices with no real guarantees of the desired end result. So it’s worth weighing the pros and cons, and often more than once.

Walking isn’t always all it’s cracked up to be.

In fact, able bodied people spend time trying to figure out ways how to walk less but when you have a disability that’s all anyone seems to want to focus on.

I used to say to people, “I use a wheelchair but I can walk,” even when no one asked; even I felt like I had to tell people that I can walk.

I no longer volunteer such information because a person’s ability to walk or not does not give their life value. Because a person can walk does not mean their life is more meaningful than the life of someone who cannot, or even makes the conscious decision not to for the good of one’s own health (in my opinion).

The fact that I can walk around the grocery store doesn’t mean much if I’m in too much pain to put away the groceries when I get home.

The ability to board an airplane without an aisle chair is fantastic but it doesn’t help me when I have 20 minutes to get from one gate to another if the terminal is the size of the small city.

The capability to walk down the sidewalk isn’t worth much if every time you do it you’re at risk for falling and hurting yourself, or getting blisters on your feet so large that you shouldn’t put on shoes for a few days afterwards.

Being able to enjoy a rare lunch out with friends loses something if you know you’re going to end the day early in part to the side effects of high powered pain killers and pure exhaustion.

The idea that you can do something doesn’t always mean you should, and yes that does apply here as well.

If the use of one’s legs was really so important to someone’s daily life, then wouldn’t they become lifeless the moment their legs couldn’t do anything? You need a brain, a heart, lungs, and a host of functional organs to live. If you really think about it, your legs don’t have to be able to allow you to stand up, walk, or run, in order to live.

Wheelchair users, or anyone else who uses assistance for mobility, can and do live full and productive lives, and they’re happy while they’re doing it too. A wheelchair doesn’t automatically confine a person or make them “less than.” In fact, for many people using a wheelchair, or crutches, a cane, or a walker, opens up a world of opportunities.

So next time you’re thinking about what makes a life more or less meaningful consider the words of Shel Silverstein and then try and learn something about someone who doesn’t walk as much as you might.