On The ADA Anniversary

I’ve often wondered if the ADA creates more problems than it solves for some, if not all, people with disabilities. It helps A LOT, but it also causes a lot of headaches.

I’ve come to realize however, that the ADA isn’t really for people with disabilities. It’s for the people who can’t even imagine what life is like to live with a disability.

Kind of like how birthday parties really aren’t for the people they’re thrown for but for the people that go to them.

Kinda.

Without knowing it I managed to grow up just as the ADA was finding its “sea legs,” which probably explains why so many aspects of my life have become, in a sense, easier even though my mobility had had an endless ebb and flow.

I once heard it said that, “those who don’t need the law are truly freed from the law,” or at least that’s the best my brain remembers it as.

The idea being (I think) that we wouldn’t need as many laws (or any) if everyone operated with the same level of moral decency.

As great of an idea as this is I doubt it will ever happen, ever. Sorry all of you who dream of world peace.

It would be nearly impossible for someone to be able to imagine what it’s like to live with a disability, unless they do in fact live with a disability themselves; besides the fact that imagining it and living it are two different things.

That’s why the ADA is so important.

It gives people a clue into what’s needed in order for people with disabilities. Although it should be pointed out that what’s deemed ADA compliant doesn’t mean it’s accessible for those who need it to be, but it’s better than nothing.

(So if you don’t know anything about the ADA feel free to read up)

As much as I (and countless others) benefit from the ADA there always seems to be something new to learn.

Such as how many loopholes there are.

Like the loopholes for already existing buildings and/or religious institutions.

As a Catholic who works in a building that’s been “grandfathered in” (multiple flights of stairs and no elevator) I curse such loopholes often.

It would be nice if there were less (or no) loopholes in the ADA but that’s only a short term dream. Someday I’d like it if the ADA was an afterthought, making it in a sense unnecessary because access for all is a natural thing.

It seems so wildly unrealistic, but I can hope right?

*A similar version of this post was written on July 22, 2014

Cerebral Palsy Awareness Day

I’ve made no secret that I’m not the biggest fan of awareness days, yet I feel obligated to participate in them. Tomorrow is National Cerebral Palsy Awareness Day in the US, not to be confused with World CP Day which occurs during the fall.

Last year there was (finally) a senate resolution officially designating March 25th as National Cerebral Palsy Awareness Day.

I’m not one to keep up the daily goings on of the senate, or any other governing body, so I don’t usually read official documents, but I read the resolution to see what it entails.

S.Res. 400 is a bit of a disappointment, unless I’m misunderstanding the purpose of senate resolutions, and if that’s the case someone please feel free to explain it to me.

All it says is what we already know, or information that can readily be found during a basic internet search.

I was hoping for something more, even just a little bit more.

I know the government is deeply divided but if this has become standard operating procedure in order to get our elected officials to agree to known facts than maybe we need to reexamine how things are run and who we are electing to run things.

So the government needs to agree that a condition that’s been around for 100s of years before agreeing that it needs recognition. Does this not sit well with anyone else, or is it just me?

We have a resolution that says tomorrow is National Cerebral Palsy Awareness Day. But what does that really mean? More importantly, what comes next?

march-25th-is-like-and-share-cerebral-palsy-awareness-day

*A similar version of this post was written on March 25, 2016

It’s Not Easy Being Green

When you think of March what color do you think of?

I’m guessing green since St. Patrick’s Day is in March & St. Patrick’s Day is all about green (at least the “rated G” version is).

Guess what color Cerebral Palsy awareness is?

Green.

I believe I have figured out one of the barriers of raising awareness for Cerebral Palsy.

Allow me to take you through my thought process.

October is breast cancer awareness month.

The color for breast cancer awareness is pink.

A color most associated with October is orange, due in large part to Halloween.

Would breast cancer awareness be as big as it is if February were its month?

Something tells me the answer is yes, but it’s still something worth considering (especially for the sake of this argument).

There are too many similarities in the basics of St. Patrick’s Day & CP awareness. There’s not enough curiosity of “check it out” factor to make awareness easier (but that’s just my opinion).

There’s also been talk of why green is the color for CP. Green happens to be one of my favorite colors so I have no problem with it, but I know not everyone is a fan.

I’m curious as to why March ended up being CP awareness month. Let us also remember that the r-word day and Down syndrome day are also in March.  It just seems kind of odd that a lot of disability related awareness is in one month. If this was on purpose then why isn’t March “Disability Awareness Month”, which is actually in October (or has that now been deemed “Disability Employment Month”).

Is the confusion part sinking in yet?

I’m not suggesting that we change CP awareness’ color or its month. It’s too “late” in the game for that. Changing any of those details now would just add to the confusion and just continue to feed into the attitude of “un-awareness”.

So what’s a community to do?

The answer is easy.

It’s the execution that’s more difficult.

The good thing about the CP community is that all its members are used to difficult. It’s practically in our DNA.

The solution?

Be the loudest group.

However, it’s not a “he who yells loudest wins” situation (although that would make things slightly easier).

The CP community needs to be the loudest but it also needs to be the smartest (as well as the stubbornest).

The odds are stacked against the CP community. They always have been, and for way too long.

I think Kermit the Frog said it best, “It’s not easy being green.”

*A similar version of this post was written on March 26, 2014, March 17, 2015, March 17, 2016

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…….

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*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

Why I: Am A Reluctant Advocate

I talk about advocacy a lot but it tends to be a weird experience each time. It’s not that I don’t like talking about it. It’s kind of like talking in the third person when it doesn’t exactly fit the situation.

Why am I an advocate?
-Because there’s a void and someone needed to fill it (or in my case try to fill it).

Do I like being an advocate?
-It depends on the day.

Did I set out to be an advocate?
-No. In fact I’ve done everything in my power to avoid it for years.

But here I am anyway.

Here’s what nobody tells you about advocacy, there are no rules.

Normally I really go for the “only rule is no rules” idea but advocacy one of those extenuating circumstances.

When you put yourself out there as an advocate you open yourself up to a lot. You’re trying to make a difference, and hopefully make the world a better place. However it’s not always a fun and positive experience. There’s always going to be someone(s) out there who wants to tear you down.

The best of intentions can also be dissolved in a heartbeat.

One of the biggest downsides of digital communication is inability to decipher tone. It creates a problem when sarcasm is one of your best traits. Have you ever been told to not use sarcasm in email? The same goes for blogging (or any other online medium) for the most part.
But it’s not the only downside.

It’s hard to put yourself out there as an expert when you feel like anything but. It’s even harder when people see you as an expert. There’s pressure to get it “right.” I don’t want to mislead people.

I’m an advocate, not an expert. Most advocates are in the same boat. But the lines can, and do, get blurred, and that’s really where things get tricky. If things don’t go as you “promised” then there’s backlash. Backlash hurts, and it hurts a lot of people.

There are lots of downsides to advocacy (but there are lots of upsides too).

Will I stop my advocacy pursuits?
-Hell no, but I wouldn’t turn down any supporters.

I never wanted to be an advocate and I don’t want to be even today. But someone needs to stand up (even if it’s sometimes figurative) and say what needs to be said, no matter how reluctant you are.

Are you a reluctant advocate?

*A similar version of this post was written on May 1, 2014

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.

The Thing About Independence

I, like most people who live with a disability (I think) have a thing with independence.

I hang on to it with a death grip. If I can do something myself I want to do it myself because I don’t always have the luxury.

Like being able to open a door or carry my own suitcase through the airport (or even just to the curb). I understand that people want to help, and I appreciate the sentiment, but what many people don’t understand is the significance of being able to do something on my own.

I know a lot of people view me as independent but they don’t realize what it takes for me to be seen as independent (as is the same for many others with disabilities).

I have a pair of pants that illustrates my independence pretty well. My mom bought me these pants because I didn’t want to buy a new pair and she was sick of watching me alternate between the same 2 pairs of pants whenever I go to the gym or pool. As hard as it for me to have clothes that fit well these pants seemed meant to be, basically meaning they fit without need of alteration.

But as far as functionality, they suck.

The first time I wore them to the gym I almost slid off the exercise ball.  My core strength is in fact so unreliable that wearing pants that provide some sort of traction for sitting is always a plus. So wearing these pants to the gym was a no-go. I’d just wear them to the pool instead. No big deal, right? You would think, and frankly I did too, but it takes me a long time to get them on. My feet never seem to want to point the right way to avoid the epic tug-of-war that ensues between my body and itself.

The only thing that stops me from giving up on putting on said pair of pants is the likelihood that I’d get banned from the aquatic facility or arrested.

I’m not saying don’t help someone if they need it. I’m saying if they say “No thanks,” respect that and back off, or ask How can I help you?” if you offer for help has been accepted.

Because even when we (or maybe it’s just me) accept help we really want as little help as possible.

There’s something about being able to do things on your own that is incredibly satisfying. It also provides me with human dignity that I sometimes lack when stepping (or rolling) out into the outside world.

Yes, not being able to open a door leaves me feeling downtrodden and pretty useless.

I have the smarts to work towards a master’s degree but something as “simple” as opening a door can prove to be more challenging (among other things).

How messed up is that?

Independence is something countless people have fought for and will continue to do, probably until the end of time. So before you offer to help someone (or probably afterwards) consider what that act of help says to that person about how you see, as well as value, their independence.

What do you consider to be signs of independence? How do you feel or would you feel if someone took those things away from you?

#SayTheWord

Language & disability is a hard thing to navigate there’s no right thing to say, or right way to discuss it, that will make everyone happy.

I have varying points of view on the subject myself.

However, there’s one aspect disability language I do have a firm view on and I don’t see it changing anytime soon, if ever.

Disability is not a bad word.

Somehow it became a bad word, a word people avoid using whenever possible, even if it means coming up with terms like “special powers,” “differently abled,” or “physically challenged,” which for the record bother me far more than the word “disability” ever has and probably ever will.

One of the blessings of my degree program is the community that comes with it. We aren’t a bunch of people sitting behind computers interacting with each other, basically we are, but there’s a community aspect that I don’t think you get with other online degree programs.

One of my classmates in particular is involved in special needs ministry and had plans on discussing things for a while but never got around to it until I appointed myself the “good bye committee” since I totally sucked at being the “social director.” It just goes to show you should never appoint an introvert a “social director” without their OK.

We talked in the dark hallway, literally, for a while.

She wanted to know what was so bad about “special needs.” I pointed out that my needs were not any more special than most people’s. Also the feeling that I have that “special needs” has a shelf life and creates an awkward situation in terms of self-advocacy.

If you’re 3 and say you have “special needs” people will probably have a clue as to what you mean or they’ll at least be understanding on some level.

If you’re 33 and say you have “special needs” people will probably think something completely different, and along the lines of “diva,” “high maintenance,” and difficult to deal with.

She understood my point after that, but wasn’t ready to embrace the word “disability,” because it’s a bad word.

I pointed out that people, largely people without disabilities themselves, made it a bad word. It wouldn’t be a bad word if so many people didn’t insist on treating it as such, however it still states the truth regardless of personal feelings.

I read a tweet recently that puts things nicely:

Not long after this conversation with my classmate I noted #SayTheWord on social media. While I can’t say I agree with everything that’s been attached to the hashtag (but can anyone say that about any hashtag?) I do think it’s about time we have the conversation.

Why I: Don’t Feel Obliged To Advocate

A tweet came to my attention recently that I feel I should address.

However, I must issue a warning that it hit a nerve (or more like stomped on it) for me.  It might even have ventured into “trigger warning” territory with me but you’d have to check with Mac & Katherine on that one to be absolutely sure.

Now it’s an honest question and if I wasn’t part of the CP community in the way I am now, if I were a parent instead (for example), I might have the same question.

As someone who has Cerebral Palsy and is pretty high functioning I’m probably going to get some kind of backlash for my answer, but might get some sort of support too.

In short, I do not feel an obligation to reach out to those who are more severely effected by CP.

Now if we’re talking about reaching out in terms of forming friendships with those who are more severely affected; I’ve felt like people tried to force the issue when I was younger whereas it’s virtually nonexistent now. I don’t think you should be friends with someone just because you share the same disability. For me it would be like everyone with brown eyes being friends. More goes into a friendship than one commonality.

If we’re talking about reaching out in terms of community advocacy, my answer is still no, but longer.

We are one community but we don’t act like it, more importantly (from my point of view) we aren’t treated as one community.

The way I see it we’re 3 major parts of 1 community, and each part has an element of self-involvement, which is its biggest asset but it’s also the biggest obstacle for greater unity in the CP community.

In case you’re wondering, the 3 major parts (again according to me) are:
1) Parents of kids with CP
2) Parents of adults (who can’t advocate for themselves) with CP
3) People with CP

There’s a reason why I listed them in the order that I did with CP often receive the least amount of support (based on my own experience).

I’m sure you’re heard the saying, “secure your own oxygen mask before assisting someone else.”

My whole life I’ve not been what someone or an organization was looking for:
-I couldn’t get a wheelchair as a child because I could walk.
-I couldn’t try out for any age group swim team because I was disabled.
-I couldn’t receive intensive post-operative physical therapy (ordered by my physician) because I wasn’t disabled enough.
-I can’t learn to drive from anyone other than someone appointed by the state because I’m too disabled.
-I can’t receive job searching assistance because I’m not disabled enough.
-I can’t qualify for assistance grants because I can work.
-I don’t receive the most basic medical care because I have a disability & I’m considered too old.

I was in my 20s before I realized help wasn’t going to come and find me, like it seems to do for countless other people. I had to go find it and even finding help doesn’t mean that I’m going to get help. It’s always been a running joke that I’ve never really fit into a mold or set of rules, but this was real life and not a joke.

I don’t feel obligated to reach out to those who are more severely affected by CP because there are more resources out there for them. Also I can’t advocate for everyone in the CP community because it is so diverse. I stick to what I know best, but if that ends up helping more of the CP community than great.

I need to put on my own oxygen mask before I can help anyone else.