On The ADA Anniversary

This week is the anniversary of the Americans with Disabilities Act (ADA)

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 throne 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 or just want to test yourself 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?

Friends & Big Heads

Not to be confused with friends with big heads, although I have a few of those too.

Being a speaker (and in a sense an advocate) is an odd thing. Granted I’m still somewhat new to “the circuit” (or whatever) so maybe it’ll get less odd over time.

Here’s why it’s odd, at least for me at this point in time. You (the speaker) tend to work with one person (the contact). But you speak to a mass of people and it’s highly unlikely that your contact has detailed demographics on even a fraction of your actual audience.

I’ve also discovered that there can be a difference between your intended audience and your actual audience; another fun aspect one must deal with.

When I made the decision to pursue speaking full time, I joked with my closest friends that I should probably create an advisory board for myself; people who will listen to or read my work and give me feedback before presenting it to the masses, and more importantly call me out on my crap whenever necessary.

One of the challenges of the CP community is that the bar which people are judged is rather low. I think it stems from the myth that there aren’t adults with CP. If you don’t expect someone with CP to be an adult it’s pretty amazing when they go to college, move away from home and hold down a full time job (or multiple jobs), or serve 20+ years in the Navy.

It can be pretty easy to get a big head when people are constantly telling you how amazing you are for one reason or another. That’s why it’s so important to surround yourself with friends and family, to remind you of your expectations rather than what others may deem an “exceptional accomplishment.”

It’s not uncommon for me to tell a friend about a talk I’ve been asked to give. It’s not uncommon for me to ask for their feedback on some of my ideas. It’s also not uncommon to hear, “That’s not great. You’re great, but that’s not what makes you great, that’s average.”

Any chance I had to developing a gigantic ego is pretty much gone after that.

It also doesn’t take long for someone to claim the job of “first reader” once I’m officially booked to talk. Ever call “shotgun!” on a road trip? It’s not much different.

Any danger of thinking I was in this venture all alone is pretty much gone after that.

I went into this venture with expectations that weren’t exactly reasonable, and that’s OK, not to mention somewhat expected. As much as you try to go into something as prepared as possible and with your eyes open there’s always something to learn (or unlearn, whichever the case may be).

I’m so grateful for the support I have while I try to educate (and maybe inspire) others. It’s important for me to keep my head on straight, if I don’t people may get the wrong idea from what I say, and wouldn’t that just defeat the purpose of all of it all?

AFO Or No?

I don’t remember getting my first AFOs. That’s how long I’ve worn at least one AFO. I’ve had periods where I’ve been completely AFO-free (high school & college mostly) but I’ve had some kind of bracing more than I’ve not had it.

Growing up coordinating my wardrobe with my AFOs was a no-brainer. I went to a Catholic school. There were no wardrobe options, unless you wanted a uniform violation. If there was one positive to wearing a uniform this is it, although I’ve never looked at gray knee socks the same way since.

Once I was freed from my uniform I stuck to pants, jeans really, even though I was out of AFOs by then. None of my campuses were ideal for shorts, for one reason or another, and I really didn’t want to deal with another “length debate,” even if public schools are more liberal with dress codes than private schools. I felt “liberated” enough in jeans and a tank top.

I owned shorts. I just never wore them. I always had at least one pair, just in case. In case of what? I’m not exactly sure, but they were there.

A few years ago I started wearing shorts again. Again I’m not exactly sure why. I got tired of the heat. I was past being tired of people asking why I always wore pants. I thought I looked really weird with a nicely tanned upper body and a whiter-than-snow lower body. It was all very un-swimmer of me.

Here’s the kicker, I started wearing shorts again while I wore an AFO. All the years of being pants only were during my AFO-free years. (I’m sure it’s not unheard of, but unusual.)

Summer is the time of year when wearing any type of footwear is difficult. Throw in needing to wear an AFO (or two) and everything that that entails, and you can probably guess why “I don’t feel like wearing shoes today” is a legitimate reason to not leave the house (or is that just me).

Those of us who are fortunate enough to be able to safely ambulate with and without an AFO, even though we do (or at least should) wear one are presented with something of a unique challenge.

“To AFO or not to AFO?”

I tend to wear my AFO in unfamiliar situations or situations where it may get lost. I also wear it when I know I’ll get tired or need the extra stability. I don’t usually wear it all day long, unless I have to for some reason, because I tend to “flex/tone” out of it. I usually end up with a pretty obvious strap mark across my foot after a day of heavy wear (another reason why a wheelchair is often a smarter option).

Being that I wear a to-the-knee (or is it a below the knee) AFO on one side and an orthotic (like a shoe insert) I struggled on how to handle the socks issue. Call me vain if you wish.

I decided against wearing short socks under my AFO early on. It’s also been drilled into my head that it’s a big “no-no” in regards to skin health. Sweaty skin covered in plastic isn’t good, not to mention gross. Plus I tend to sweat a lot (in my opinion) so subjecting myself to conditions that could produce more sweat, no thanks.

I thought I’d end up wearing knee socks with shorts. I mean, I wear them almost every day anyway so it made the most sense, for 5 minutes. Have you ever seen adult knee socks? They’re either really lame or really cool, but neither case is ideal for summer wear. Also many of them are fairly thick and that brings us back to the sweat issue. I can’t afford those fancy pants socks that reduce moisture, or whatever, and even if I could afford them, they’re socks, not something I want to spend a lot of money on. Some people can afford it and want to, whatever works for you.

Also are knee socks fashionable these days? I want to say no. I think the last time I saw anyone wearing them on a regular basis (other than myself) is on some special with Hef’s girlfriends. Possible moral issues aside, do people look to them for fashion advice? Again, I want to say no, since you didn’t see an explosion of knee sock fashion.

As funny as I thought it looked (and still do, to be honest), I settled on a short/knee sock combo. It’s not for everyone, but it’s what works best for me. Plus I can usually get two pairs (or two uses) out of one pair of ankle length socks (so I didn’t need to do more shopping!).

If you were AFOs (or one) how do you handle AFO related issues, like socks or “to wear or not to wear”, or anything else? Do you have any AFO related questions? Don’t be shy.

*Now that I’ve written this I think I remember doing something similar to this before.

Why I: Don’t Comment

It has been brought to my attention, directly and indirectly, on multiple occasions that I have somewhat unconventional blogging and social media practices.

I can’t say I disagree with you.

I don’t think I’ve ever left a comment on my own posts. If I have it was a mistake and I’ve deleted it asap. The great thing about WP is that all comments (at least the ones left with email addresses) get emailed directly to me. I can usually get back to people fairly quickly.

If comments pour in on a particular post then I usually decide to do a follow up post. It seems to work out well so why change things?

I started blogging before social media ever existed so the best way to get people to read your blog was to comment on other people’s blogs, and hope they returned the favor. Sometimes it works, sometimes it didn’t.

I’m glad the practice went away, mostly because I felt like come kind of “comment prostitute” who said a lot but not much at all, and all at once. I’d usually laugh out loud when someone called me a “genuine and caring person” because of a comment I left, when all I was trying to do was get noticed.

As much as I find social media overwhelming I’m glad it’s taken some of the pressure off in regards to driving traffic.

These days it’s much more common that I want to leave a comment but I’m not able to, whether it be because of profile settings or the internet ate my comment before (or sometime after) I clicked “submit.”

I was reading a CP-related blog, written by a mom with a school-aged daughter with CP. At the end of the post this mom asked that if anyone had suggestions or advice to offer and if they did, to leave a comment. What followed was a rather spirited debate over the “right” thing to do, if you want to even call it that (depending on what your definition of debate is).

None of it was/is surprising. It happens a lot in the CP community (and I suspect the same goes for other health/wellness communities).

It’s just another one of the many glaring examples why I don’t comment on posts as much as my 1st instincts tell me to, as much as I value my instincts. Also diplomacy is not my forte, so crafting my thoughts before shooting off my mouth serves myself, and the greater good, much better.

The more I’m in and around the world of “health blogging” (and to some extent blogging in general) the more I learn. The more I learn about other people, like what brings them to blogging and what they bring to it. I’ve also learned what people have come to expect from me as a blogger, whether they know it or not.

I know a lot about living with Cerebral Palsy. After living with it for close to three decades (and hopefully longer) I’m something of an expert. However I am not a doctor. I have no formal training. I can only speak from personal experiences and secondhand accounts. I can provide insight but I’m far from infallible.

Every case of Cerebral Palsy is different, and mine is no exception.

Emphatically throwing in my two cents to a confused parent seeking advice through their own blog doesn’t typically sit well with me. What works, worked, or hasn’t worked for me, might not be the same for someone else. I’ve been on the receiving end of unintentionally broken promises (especially as a child). I cannot, and will not, do that to someone else, especially to a child who has someone else making all of their decisions for them.

So why do I even have a blog if I’m so cautious about giving advice?

I have a blog because I want to speak for myself and maybe help others in the process.

Leaving a comment is limiting, in my view. You can’t go on forever, and even if you do people will stop reading. Commenting isn’t supposed to be about the person leaving the comment (in my opinion) but rather about the person (or post) you are commenting on. Comment forums on blogs aren’t the place to drag your soapbox. I also find it easier to “hide” behind your comment(s).

If you have something to say you should take ownership over it. If you don’t want to take ownership over your opinions then you should probably keep your mouth (or your computer) shut.

I also find it hard to remember what I said from one comment to another. While it can still happen on a blog it’s easier for me to catch on my own platform and address if needed.

I do find ideas for my own posts from other people’s posts or comment forums, so I can’t be too anti-comment (and I will often link back to the inspiration). However putting my own thoughts on my own forum allows me to take ownership, as well as some level of control, of my experience in my own words. I don’t have to “duke it out” with anyone unless I choose to, and if that happens it’s usually one on one so there’s some additional level of respect and privacy (which is also why I don’t typically tweet someone back and have an unknown number of people know about it).

I don’t comment, not because I don’t have anything to say. I don’t comment because I wish to be intentional with my words and actions. Having my own platform allows me to do this the best way I know how, no matter what the topic or issue at hand may be.

 

On Peaking

Last week I was in the car with my cousin when a song came on the radio. It’s a good song, but I have one particular problem with it, it’s so overplayed I can’t listen to it for more than 5 seconds before I want to listen to something, basically anything, else.

Here’s my problem with this particular song. The whole “prom-posal” thing.

Actually I take issue with “prom-posals” I general. Certain things that surround them, like songs, just agitate the issue further.

As much as I wanted to make a big deal about going to prom I’m glad I didn’t. In fact prom isn’t all it’s cracked up to be, if you want my opinion (and it’s gotten pretty out of control, also my opinion).

I was on my way home after spending the night at my aunt’s house, on the couch. I slept pretty well considering my track record for sleeping in places other than my own bed hasn’t been that great since my last surgery (yes, that long ago). This was after going to the Red Sox game the day before and getting to “bed” sometime around 3am.

Perhaps I wasn’t my freshest during this thought process, but my best thinking tends to come during unexpected moments.

I really am going to make a point here, I promise.

The thing about this particular song is that it could be really meaningful if used in the right “spot.”

Prom can be great, but should it really be “the best night of your life”?

I certainly hope not. Great, yes. But the best night of one’s life? Isn’t that setting the bar a little low?

When I started high school I thought my life would finally start. Instead I watched friends embark on active social lives with relationships and lay the groundwork for future careers. They had everything going for them, while I was waiting for my life to start, still.

You could say college wasn’t much different.

A big reason why I applied to grad school is because I didn’t want to find myself wishing I had in 10 years (or so) from now. It’s not ideal motivation, but it works.

I think you could say the same about a lot of people my age, and even younger.

I’ve been thinking about things from a different angle and some of it is really starting to stick with me (disclaimer, none of this is really original thinking).

If you’re waiting for your life to start then don’t you miss out on life itself?

If you “peak” in high school, or even college, isn’t the rest of your life going to be somewhat disappointing in the long run?

I’m not saying that you shouldn’t have a peak or two early on. You can have a peak without having peaked, I believe. But peaking early on can’t be all it’s made to look like. (Right?)

In an ideal world you’d be living a great life, instead of focusing on trying to string together a series of incredible and unforgettable moments.

Life is a marathon, not a sprint, and should be treated as such (Coming from a non-runner using a running metaphor).

Or try this; life is a series of peaks and valleys. Isn’t it better to focus on the whole journey rather than reaching every peak as quickly as possible? Doesn’t that make the valleys harder to get through? Isn’t it better to look back on your life and see that the peaks were really higher than you thought and the valleys weren’t really that low?

Isn’t it also better to think you’re on the “verge of hitting your stride” rather than currently “hitting your stride” or “having it your stride.”

Is any of this making any sense?

One more thing: THANK GOD I didn’t peak in high school (or college). My life wouldn’t be nearly as awesome now if I did :)