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

Acknowledging Your Personal Puzzle

There are a fair number of analogies of what it’s like to live with a disability, I find some more accurate than others, but countless people disagree with me, which is why there are so many analogies.

There’s also something to be said for basic language around disability, person first, identity first, whatever.

There’s so much to be said about so many topics that divide the disability community but I think I’m starting to find a common thread in all of them.

The path to self-acceptance or one’s own disability.

While I sometimes forget I have Cerebral Palsy, it took me a while to accept the fact that I had Cerebral Palsy, and that it did in fact inform every aspect of my life.

Once I figured that out I thought my life would get easier, at least somewhat, mentally, but it’s not really like that. It can actually be hard to be conscious of how your disability is integrated into your everyday life, especially if you find yourself thrust into the world of activism.

At what point do you highlight your disability, especially if it isn’t visually obvious?

How do you identify as disabled?

To what extent do you bring attention to your disability?

The Cerebral Palsy community is an interesting one, for various reasons, but not limited to how much a person allows CP to be part of their life. It’s always a piece of the puzzle, but the size of the piece is the question.

Some get to make the choice, others don’t, to some extent.

Making the conscious decision to embrace it, and all the opportunities that come your way because of it is a completely personal decision.

As someone who didn’t embrace their disability until their 20s I wonder just way I waited so long. I’ve gone back in my head wondering what and/or when I would’ve done something differently multiple times and I can’t come up with and I can’t come up with something, anything, that I would willingly change.

I guess that’s one of the pieces of my own puzzle.

Of Ice & Pies

I admire what the Ice Bucket Challenge has done to bring awareness to ALS. However, I was completely over seeing videos take over my feeds within a matter of minutes.

I’d don’t have objections to “fundraising stunts,” I really don’t. Anyone who has ever been involved in soliciting donations knows anything that can get money (and attention) is good, almost.

I know funds from ALS research are at an all-time high, even after the hype of the Ice Bucket Challenge has long died down. I’m not going to try and tell you that I have a problem with that, because I don’t (you’d have to be a certifiable loon to have a problem with raising money for underfunded research).

However, the whole thing seems so backwards to me.

The object is to NOT want to pour ice water over your head. Therefore, you donate money.

Your F@cebook feed SHOULDN’T have filled up with videos of people dumping ice all over themselves.

Right?

Well apparently not.

There’s also the issue of ALS awareness, as in, what ALS actually is.

It, like CP, is greatly misunderstood.

(What is it about neuro –muscular conditions? It feels like “misunderstanding” is part of the conditions themselves.)

While I’m not the biggest fan of disability simulations on the whole I think any fundraising “stunt” should bring awareness to the actual condition. ALS does not make you cold as ice/ice water. It does however rob a person of any and all muscle usage.

I should also tell you that the (F)JV that’s still alive and well inside me has a real problem with wasting water, especially when areas of the country are experiencing severe drought. It’s probably not as drastic as one of those “cutting off the nose to spite the face” deals, but I think you get where I’m going with this, if not just think about it for a while.

I have watched (and posted) few ice bucket challenge videos (or relevant posts) so I’m not entirely blame free here. So watch Father Kyle Sanders’ video & read Maria Johnson’s post if you want to know what I consider “cream of the crop” of all this mess.

I’ve heard rumblings of wanting to do “ice bucket challenges” for other illnesses/conditions, even now. While it’s tempting to “strike while the iron is hot” there’s also the danger of “fundraising fatigue,” not to mention lacking originality and creativity.

Speaking of striking while the iron is hot, there was another “fundraising stunt” going around the interwebs not long after the ice bucket challenge. I’m not that familiar with it so you’re going to have to cut me some slack if I get some of the details wrong.

It involves CP funding & pie.

As I understand it you’re “tagged” and you have to donate $10 to CP research and hit yourself in the face with a pie within 24 hours, if you don’t you donate $100.

It gets points for originality, thereby partially, avoiding “funding fatigue,” but I can’t say I’m all “gung ho” for this either.

(F)JV me isn’t too happy about the waiting of food thing. People in the world are starving, and you’re throwing food in your face? Not too cool.

I also come from a family who holds pie in the highest regard. My grandmother made apple pie that’s the stuff of legends, literally. She died when I was a toddler so I never got a chance to taste it for myself, or if I did I don’t remember it. I’m sure Grandma wouldn’t be too crazy about her favorite grandchild participating in any event that involves pie, unless you’re going to eat it.

Although I have to confess, I wouldn’t mind if my social media feeds had a few “pie in the face videos,” if for no other reason than to be proven wrong.

As much as I hate seeing pie be wasted, I would love to see people trying to bring awareness and funds to CP; because as much as I don’t want to cure CP I can’t deny that treatments and assistance for those who need it just isn’t there (speaking from experience).

I  saw less than 5 pie videos appear on my feeds (I saw more than that, but indirectly, not through original posts or shares). I won’t lie; I wish CP would become the “next big thing” to support, even if it’s just for the day, because sometimes life gets lonely when people aren’t giving you the time of day (especially if you’re an adult).

Throwing a pie in your face doesn’t tell you anything about what it’s like to live with CP either. If you want to know what it’s like to have CP ask someone who has CP, while every case of CP is unique to the individual, you’ll get an idea.

So what’s the point of all of this seemingly senseless rambling?

Save your pie for dessert & your ice water and buckets for summertime fun, putting out actual fires, or gardening.

Get out the checkbook (or debit card) and give your money, or better yet your companionship

*A similar version of this post was written on September 19 & 24, 2014

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.

 

What Is Cerebral Palsy?

For the past couple of years I’ve devoted my writing efforts during March to Cerebral Palsy.

Why?

Because despite being the most common disability among children very few people know what Cerebral Palsy is. Now for a medical condition that was first studied in the 1860s, (but probably first identified during the time of the Ancient Greeks) the fact that the everyday person probably doesn’t realize that they’ve probably at least seen 1 person with CP during their lifetime is, well, I don’t know what to call it.

Sad?

Disappointing?

Shocking?

Not surprising at all?

All of those, and then some more.

There are people who have heard of it but have more misconceptions than actual facts about what it is and what it isn’t.

And honestly, I wonder if it would be better if some of those people knew nothing at all, because their misconceptions run so deep and are so flawed that it might be better if they (or rather we) started from square one.

So here I go again.

What is Cerebral Palsy (CP) Anyway?

It’ll get into the technical aspects soon but I wanted to start with something simple for today:

keep-calm-its-only-cerebral-palsy

After I get into the basics I’ll get more personal, probably, because I can’t speak for everyone with CP; for two reasons (1) Cerebral Palsy effects each person that has it differently. No two cased of CP are exactly alike. (2) Also I don’t want to pretend I know everything so I can’t in good conscious speak for everyone who has CP. That just wouldn’t be fair to the CP community or everyone wanting to know about CP.

In previous years I’ve taken questions from readers and it’s been overwhelmingly positive so I’ll continue with that tradition, because if it ain’t broke….

If you have any questions, feel free to leave a comment or fill out the contact form. You can even send me an email if that works better for you.

Until then…….

BhqYV8QCYAAt8k1

*A similar version of this post first appeared on an old blog on March 1, 2016

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

International Day Of Acceptance

When I started gaining attention for being an “adult with special needs” (seriously that’s what I’ve been called, more than one should), I spent time reading other blogs, mainly seeing if there were any common myths out there that needed to be debunked (not many worth debunking, for the record).

I noticed that a few people, mostly CP moms (as in moms who have kids who have CP), would mention something called 3E Love. Curiosity got the best of me so I checked out 3E Love for myself.

I bought my 1st wheelchair heart tee shirt (& sweatpants) at my first Abilities Expo. I LOVE the sweatpants. I wonder how I ever traveled without them.

I bought my dad his first shirt before his first Abilities Expo, and did the same for my cousin (it’s become a tradition I guess).

Several people in my life have 3E Love products; my dad even uses a 3E Love sicker to cover up a ding on his car.

I was able to hear Stevie (also known as Annie’s brother) share the story of 3E Love & speak to him personally a few times.

I never had the opportunity to meet Annie but I have a feeling I would’ve liked her based on what I know about her. Our shared skill of using kitchen tools as accessibility aids notwithstanding, I’m pretty sure she was an awesome person to know.

3E Love & the Wheelchair Heart were created by Annie (also known as Stevie’s sister).

wheelieheart

Stevie & his family started the International Day of Acceptance as a way of remembering Annie.

Join in the movement of acceptance.

IDoA

*A similar version of this post first appeared on an old blog on January 20, 2014

Now What?

This is the 3rd time I’m participated in HAWMC. Each year it comes at a less than ideal time and by the end I can’t wait to write the last post. This year is no different. As much as I get out of blogging everyday this time I just need to be able to check this off the list and move onto the next thing.

What is the next thing?

Practically speaking, there’s a paper to write, podcasts to record, and Christmas shopping to finish (which should’ve been finished by now, because I’m one of those people who shops throughout the year to avoid the added stress).

Ideally speaking, I have a project coming soon. Just how soon? It’s at the editor’s but I’ve already seen what may well become the final product. It turns out I’m very bad at providing feedback short of ripping something, anything, to shreds.

Then there’s grad school to finish which includes a capstone that needs writing. I feels like I’m in the middle of a triathlon I couldn’t find the time to train for, after I signed up and paid the entry fee, so I kind of should do it.

All of this pretty much leaves my career up to chance, word of mouth, and pure luck. It’s not that I haven’t wanted to speak and write more in the last year. It just hasn’t happened. I’m trying to see it as a positive, to give me the time to devote to other things without having to decide what to do or overextend myself.

That doesn’t mean that my life as an advocate is going to be put on the back burner. Another degree will add another dimension to my business, to my advocacy work, at least that’s the plan anyway. HAWMC isn’t the end of the line, it’s a stop on a journey to something greater. But like I’ve said already, the month has been long enough. It’s time to move on to the other things I have on the calendar on the way to where I eventually see myself being.

However, I’m available if someone needs me.

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.

Challenging Victories

Being an advocate is full of challenges and victories that no one should take for granted. One of the best things to remember is each one of your challenges will make a victory closer to the next person to travel the road; each one of your victories came off the shoulders of another person’s challenge.

Here’s a short list:

5 Difficulties

-A big community with very little resources that serve the whole community

-Misconceptions longer than your arm

-Undereducated medical professionals

-Lack of access

-Pushback from other advocates

5 Victories

-Being valued for what experience I do have

Being able to take part in the changing landscape of healthcare

-Finding a career

-Building genuine relationships

-Trusting people have my best interests at heart, or at the very least in mind

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.

Highlights Of Activism

Being an activist can be a thankless job. Sometimes it can feel like you’re doing a lot of work for very little return. Many activists spend hours upon hours, of their free time, pouring themselves into projects and passions for no money.

I fell into the life of an activist completely by accident, but I stayed in it because of passion I have for it.

A friend of mine had to write a paper, and decided that I should be the main subject. I wasn’t expecting anything to come of it, but I did ask for a copy.

During a clinic visit I happened to mention the paper to someone and they asked if they could read it. I’m sure more than just that one person read it because during the visit after a few people seemed to know about it.

I was asked to speak at the next conference, and that started it all.

I knew there wasn’t a lot of information out there about people like me for people like me but I was hoping someone had it.

In reality, no one has “it.”

People have pieces, but even when you put all the pieces together there’s not a whole picture.

For a disability that’s been around for centuries people, doctors included, are just getting to the point where adults with CP are being recognized.

We haven’t been able to get adequate medical care, even if we are disabled enough, because there are few medical studies for the demographic.

A few years ago, there were no studies, at least not reliable ones.

There’s progress.

It’s just really slow.

There has been no one highlight of this journey because it seems like everything is a highlight in some respect. Although it can be a thankless job when the “thank you”s do come it’s pretty awesome, they make it all worth it.

It also helps to take the long view, seeing the good that’s done as a whole, rather than seeking out short term goals, getting what you want/need with little regard for the whole.

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.