World CP Day

Cerebral palsy (CP) is an umbrella term encompassing a group of non-progressive, non-contagious motor conditions that cause physical disability in human development, chiefly in the various areas of body movement.

Cerebral palsy describes a group of permanent disorders of the development of movement and posture, causing activity limitation, that are attributed to nonprogressive disturbances that occurred in the developing fetal or infant brain. The motor disorders of cerebral palsy are often accompanied by disturbances of sensation, perception, cognition, communication, and behavior, by epilepsy, and by secondary musculoskeletal problems.

CP, formerly known as “Cerebral Paralysis,” was first identified by English surgeon William Little in 1860. Little raised the possibility of asphyxia during birth as a chief cause of the disorder. It was not until 1897 that Sigmund Freud, then a neurologist, suggested that a difficult birth was not the cause but rather only a symptom of other effects on fetal development. Research conducted during the 1980s by the National Institute of Neurological Disorders and Stroke (NINDS) suggested that only a small number of cases of CP are caused by lack of oxygen during birth.

Types Of CP:
Ataxic
Athetoid/dyskinetic
Hypotonic
Spastic

All types of cerebral palsy are characterized by abnormal muscle tone, reflexes, or motor development and coordination. There can be joint and bone deformities and contractures (permanently fixed, tight muscles and joints). The classical symptoms are spasticities, spasms, other involuntary movements (e.g. facial gestures), unsteady gait, problems with balance, and/or soft tissue findings consisting largely of decreased muscle mass. Scissor walking (where the knees come in and cross) and toe walking (which can contribute to a gait reminiscent of a marionette) are common among people with CP who are able to walk, but taken on the whole, CP symptomatology is very diverse. The effects of cerebral palsy fall on a continuum of motor dysfunction which may range from slight clumsiness at the mild end of the spectrum to impairments so severe that they render coordinated movement virtually impossible at the other end the spectrum.

CP is not a progressive disorder (meaning the brain damage neither improves nor worsens), but the symptoms can become more severe over time due to subdural damage. A person with the disorder may improve somewhat during childhood if he or she receives extensive care from specialists, but once bones and musculature become more established, orthopedic surgery may be required for fundamental improvement. People who have CP tend to develop arthritis at a younger age than normal because of the pressure placed on joints by excessively toned and stiff muscles.
(information taken from Wikipedia and reorganized/edited by me)

Why am I telling you all of this?

Because there is no cure for CP.

But I have to be honest that’s quite fine with me, most days anyway.

That doesn’t mean there can’t be a collective of sorts. Stats are one thing.

Personal stories are another, and even better.

Which is why I collected all the personal stories I could find and put them in one place.

If you have a CP blog, have one that you like, or just know one, leave a comment with the URL

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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

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

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.

 

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.

Spreading The Love

When you first start writing seriously you tend to look for others in your situation, or at least that’s what I did. When you don’t find any, or at least what you were looking for, you start looking at other health blogs for a “similar enough” community to try to emulate.

I found myself reading a lot of CF blogs, and learning a lot from them. I didn’t find everything missing from the CP community that I had been looking for but close enough. I wanted to connect with people in the CF community to see what I could learn and bring to the CP community.

For example: the issue(s) of transitioning from pediatric to adult care since CP & CF are both lifelong conditions that involve transitions.

It didn’t take long before I found Run Sickboy Run. It seemed like every CF blog mentioned Ronnie at least once. Clearly he was good at whatever he was doing.

I’ve been able to learn a lot about self-advocacy as well as blogging in general from Ronnie. If I can have a quarter of the impact on the CP community that Ronnie’s had on the CF community than I’ll consider it a success; because I don’t think I can even come close to what he’s done (like creating a social network for the CF community).

He’s also been kind enough to respond to my comments for him & leave his own for me. It’s truly something that makes a small time blogger happy. He’s also been nice enough to share his knowledge with me when one of my doctors brought up the possibility pulmonary function testing.

It’s from getting to know Ronnie though his blog (& guest posts by other CF patients) that I’ve found the type of community that people with CP should be a part of. In fact I’ve been suggesting to the professions since I started reading CF blogs that we should look to the CF community as a model for medical treatment; and believe it or not someone brought up the same idea at a CP conference.

Simply put, thanks Ronnie for all you do.

There are two other individuals I have gotten to know that blend health activism and everyday life well:

Jessica at Fashionably Ill & Sarah at Back To Carolina

They both show that professional patients are just normal people who just probably more familiar with their doctors.

*A similar version of this post was written on April 14, 2013

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.

 

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.

Remembering Jack

From a school in Copper Valley, to a legacy of thousands.

As the story goes a group of Jesuits and some of their Sister friends went to Copper Valley to open a school for Native Alaskan children.

60 years later the legacy continues to make a world of difference.

One of the Jesuits from that Copper Valley School decided to walk to Bethlehem in the name of peace.

He and his fellow pilgrims arrived in Jesus’ birthplace on Christmas Eve, or so the legend goes.

(Did you think I meant the Bethlehem, Pennsylvania? So do most people when they hear this story)

That same Jesuit joined me in a buffet line one spring in Seattle and invited me (and my community) to a meal at the local Jesuit residence.

Just like people do every day, except this was only the 2nd time I’ve crossed paths with this Jesuit. Typically, this kind of gesture, although nice, would seem odd to me.

Except for the fact that this Jesuit seemed to possess a level of generosity and kindness of spirit that I hadn’t encountered before, and haven’t since. I knew he meant it.

This kind Jesuit with a boundless spirit and unforgettable sense of humor has touched many, a goal many reach for but very few achieve.

People thought he was nuts. I’m sure there were times he though his own ideas were nuts too. But he went for them anyway.

I laugh to myself whenever I wonder if I’m about to embark on something people think is nuts. Jack would probably be one of those people too, the only difference is, He’d tell you you’re nuts with a smile on his face, then tell you to go for it.

What the Lord can do with a restless spirit is truly amazing, and only something the Lord can do.

I have been truly blessed by his example.

fr-jack-greeting-card

Father Jack Morris S.J.
1927-2012

“Our human task, if you like, is to not flee from the ill-being but to transform it.”
–Jack Morris, June 2012

*A similar version of this post was written on October 8, 2012, October 22, 2014, September 30, 2015

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