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?

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

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On Dignity & Disability

I’ve been told that it’s a good idea to set up internet alerts to keep up with the news that may interest me. While I think it’s a good idea and I have come close to doing so on more than one occasion, I’m glad I don’t have any of it. There are plenty of days when I want to pull the plug and throw my computer out without additional influence. Can you image what would happen if articles ended up in my inbox the second they were published? No thanks.

Over the last few weeks there have been a few articles that have grasped my attention and just won’t let go (and raised my blood pressure exponentially).

Please note (and respect) that I will not be linking directly to or mentioning any specific details of these articles. I’m choosing to use my “linking power” wisely.

I’m not expert on dignity but it’s been a recurring topic in my continuous inner dialogue lately. What is it? How does one achieve it? How should you go about protecting it? I think you get the idea.

The issues surrounding dignity or lack thereof and disability are really starting to get to me. I’m not the most diplomatic person (read: at all) & I have a temper, so my first reaction is usually anger and it takes me a little time to get my thoughts out so someone else can know what I’m trying to say and want to listen.

Dignity in regard to disability is not a new frontier. However, it is one that needs exploration by the able-bodied (and those related in any way to someone with a disability). It can be a tricky subject to approach in mixed (ability) company; it probably has something to do with sympathy vs empathy, or other similar topic.

I remember the first article I read that made me question how people saw dignity for people with disabilities. It made me so angry I just sat on my feelings for a while, because I wasn’t “into” being a disability advocate then so throwing my feelings out there would’ve been shocking to everyone. I kept my feeling to myself, mostly, but it’s never left my mind.

I’m pro a lot of things but I draw the line somewhere before preforming medical procedures to stop individuals from growing up, literally, because someone going through puberty and adulthood are more difficult to care for.

It’s a fact of life, disability or no disability. There shouldn’t be a separate set of rules for those with disabilities. That’s the exact opposite of what so many people fight for.

If the same thing were to happen to an able-bodied person masses of people would be up in arms and it wouldn’t even make it in front of an ethics board, never mind be approved by an ethics board.

Let’s not even discuss what would happen if a child were to ask to stay child-sized forever, because I think we can all guess what would happen.

One area I tend to struggle with my thoughts the most is in an educational setting. I’d like inclusion for all, of course, but there are situations when I wonder if it’s really possible. I’m against self-contained classrooms mostly but I’m not completely against them. If you want to reinvent the mold for your child to fit into the mold that’s fine, but not at the expense of other children, that’s not OK. A child needs to be given the best environment to flourish in the long term.

Creating a short-term solution and hoping that it “just might” evolve into a long term plan is not only irresponsible but further proving the long held myth that people with disabilities are handed opportunities because they can’t afford them for themselves.

Let’s not forget about a certain photo controversy that’s become a virtual powder keg of opinions.

To be clear the differences of opinion are with the photo. I haven’t read a single comment from someone with a disability who has a favorable opinion of the photo. At the same time the majority of positive opinions have come from parents (or caregivers etc.) of a child with a disability. While both groups (PwD & parents, etc. of PwD) are part of the disability community each comes to the community with a different point of view.

I will not be talking about the point of view of parents, etc. because I am not a parent and I am not close enough to “the etc.” to be able to speak on it effectively.

Speaking as a person with a disability I can tell you that the photo was an immediate turn off. I’ll often read articles even if the photos turn me off the subject. I’m a visual person so I understand the value of a well-placed visual, whether positive or negative. Sometimes I have to “override” first instinct and give something a chance. However using this particular photo was foul play on the part of journalists and parents.

Just because you’re OK with complete access (and/or are given it) doesn’t mean it’s OK to take advantage of it.

How many pictures have sparked controversy because a parent posted it online? Pictures of able-bodied minors in a diaper or even a questionable outfit are posted every day and someone somewhere always had an unfavorable opinion of it. And if the backlash is big enough social media accounts are suspended.

Why isn’t the same courtesy extended to an older individual who cannot speak for themselves just because a relative or caregiver gives the OK?

And what would happen if someone who could speak for themselves is perfectly fine giving a journalist full access and a similar photo was used? I doubt people would have a similar reaction. In fact I doubt a photographer would even take such a picture.

I’m going to take it one step further (maybe a step too far even). Child predators toll the internet 24/7 looking for images of people, most of them are seemingly innocent images.

People get upset and “cry porn” if a mom posts a picture of a three-year-old proudly wearing her “big girl underwear.” Yet it’s a “beautiful image” to see a disabled 16-year-old wearing nothing but a diaper.

Isn’t this a double standard?

I could probably go on and on with more examples, in fact I know I could, but I’ve said enough, for now.

A friend said things better than I ever could, “because disability is involved, we accept the notion that disability means less-than-human. We must remember that a person is a person, no matter their abilities. Everyone deserves to be presented to the world around us in a manner of dignity and respect.”(source)

*A similar version of this post was written on July 29, 2014

Revisiting: The Roll Call

Since I’ve been musing about the possible death of blogging and the importance of not overstepping boundaries when it comes to storytelling I thought it would be a good idea to revisit (and then repost) the database of Cerebral Palsy related blogs, with a few vlogs thrown in.

It’s worth noting that many of these blogs haven’t been updated in years and are written by people who have family members who have CP, both facts that bring to light my previous points. However, they all have content worth looking at if you’re interested in getting to know a few individuals that make up the CP community.

This same list will be updated and expanded on an as needed basis here.

A Life Less Ordinary

A.J’s Awesome Adventures

A Place To Write Things

A T-Rex Life (Videos)

A T-Rex Life: Cerebral Palsy And Me

About The Small Stuff

Adapted World

Adventures In Mattyland

Amazing Amelia

Amazing Syafiah & Co

An INFJ With CP

And The Wheels Keep Turning

Andersen Family Blog

Ayla’s Rainbow Connection

Better Than Normal

Bird On The Street

Brace Yourself Declan

Brendan’s Life With Cerebral Palsy

Brielle and Me

Bringing The Sunshine

Caleigh’s Corner

Caneable

Cerebral Palsy Baby

Cerebral Palsy Daily Living

Cerebral Palsy Family

Cerebral Palsy Mamma

Cerebral Palsy Soccer

Coley’s Corner

CP Shoes

Cracks In The Pavement

Crip Video Productions

Dealing With My Life With CP

disABLED guy

Do It Myself Blog-Glenda Watson Hyatt

Drake And Lulu

EMDeerx Muse

Endless Jubilee

Finding My Way: Journey Of An Uppity Intellectual Activist Crip

Following Elias

Free As Trees

Gas-Food-Lodging

Hannah’s Adventures of Living Her Dreams

Hanpike

Henry’s Heroes

How Life Happens

I Heart Milo

I Will Skate

In Bloom

In My Eyes: Life With Cerebral Palsy

In The Words Of A Green Giraffe

Insights From The Sidelines

Isla’s Journey

Jake Olver (Videos)

Jentry Holthus (Videos)

John W. Quinn (Videos)

Journey With CP (Videos)

Jude, The Diary Of A Baby and A Stroke

Jump In For James

Kaitlyn’s News- Living A Happy Life With Cerebral Palsy

Katherine Hayward, My Life With Cerebral Palsy

Kelsey Can

Kendall’s Hope

Kristen’s Life With Cerebral Palsy

Lieck Triplets

Life And Family, Steve Wampler Is Living With Cerebral Palsy

Life In Holland

Life With The Loraines

Living My CP Life (videos)

Love That Max

Making My Mark

Mark Henry

Massagermommy

Mattes’s Madness

Micro Preemie Twins: The Story Of Holland & Eden

Miss Charlie

Missy’s CP Journey

My (dis)Abled Life

My Life With CP (Videos)

My Spelling Sucks

Nich Vaughan

No Superhero

Off Balanced

One Day At A Time

Our 3 Little Miracles

Outrageous Fortune

Painting For Hailey

Premeditations: Reflections On Preemie Parenting

Riley’s Smile

Rob J. Quinn

Ryn Tale’s Book Of Days

Sammy’s Walk Through Life

Smith’s Holiday Road

So… How Did You Break Your Leg Then?

Spashionista Report

Speak Up, Sit Down

Special Momma

Stories With Sam

Team Aidan

That Crazy Crippled Chick

The Blessing Counter

The CP Diary

The Deal With Disability

The Fabulous Adventures of a Four-Legged Woman

The Galli-ringo Family

The Girl In The Wheelchair

The Grappler Within

The Nest

The Writer

Three Chocolate Brownies

Tonia Says

Trailblazing With CP

Trousdell Five

Tutti Frutti

Twingle Mommy

Unexpected Lessons

Updates on Lewis Jack

Verses Of Vaughan

Victor’s Smile

View From A Walking Frame

Welcome Blessings

Welcome To Elijahland

Wherever He Leads We’ll Go

Writer In A Wheelchair

Zachary Fenell (Videos)

Speaking, Again

The last podcast recording I meaningfully took part in was about a year ago. I was feeling that it was time to move on, because podcasting is more work than I had anticipated, even though I basically just show up and talk.

However, the fates had other plans.

I stopped watching Speechless halfway through the season. It wasn’t intentional, but it was a perfect storm that made it pretty easy to stop watching & not feel like I missed anything.

Instead I watched other things, on network TV, cable, and Netfl!x; and noticed a lot of portrayal of disability (and lack thereof, etc.).

Some of it was good, some was great, some was downright horrible. I asked Daniel if he would be interested in recording a podcast on the subject, and he was.

So, we did.

2018-05-02

What do you think about the various portrayals of disability on TV (or media in general? Do you have any favorites? How about aversions?

I Wish I Was A Unicorn

On a recent episode of The Accessible Stall Kyle & Emily talked about employment/unemployment. Naturally this topic hits close to home at the moment, so I gave it a listen, naturally.

2018-04-25

You should give it a listen when you’re done here.

Both Emily and Kyle acknowledge that they’re both in the unique position of being gainfully employed but that’s not the part that stood out to me, although it should be noted that it’s highly unusual for two normal (meaning not really that famous) disabled people to be financially self-sufficient.

They called themselves unicorns.

Then it hit me.

I wish I was a unicorn too.

I want to be a unicorn.

I do have a dream job in mind, several actually. I’d like to achieve my dreams but right now I want to be a unicorn.

I am already a unicorn, in a sense, but I don’t feel like a “full unicorn.” I have no upward mobility in my current job. Some days I feel like I’m just filling a spot until someone else comes along or I leave my position. So, I’m more of a non-unicorn than the actual unicorn I wish I was.

There you have it, I’m still looking for a job. If it happens to be my dream job than that’s a bonus. But more than anything I want to be a unicorn, not because I want to be a unicorn, but because I don’t think anyone should go around wondering or knowing if they are the unicorn of their workplace in the future.

#ILoveMyDisability

There was a time when I’d spend my nights reading blogs, but these days I’m more likely to read threads of hashtags.

#SayTheWord & #StopAbleism2015 are two that kept me up late at night scrolling though people’s thoughts. #ILoveMyDisability is just the latest one.

I thought I’d share a few of my favorites, in no particular order, for no particular reason:

 

Maybe I’m Not An Expert

With March coming to a close so goes my blogging blitz. It never ends up how I think it’s going to and this year was no exception.

I feel like this year was different than the others, for a few reasons, less facts, more stories, for one thing, or is that two?

There were topics I wanted to write about but never got around to or have already written about. When I came up short I dove into my archives, probably more than I wanted to, but it worked. I think?

I’ll get to more stories later on, possibly when the timing is better.

One thing that kept getting my attention this year was the focus on children and the desire to treat, if not cure Cerebral Palsy as soon as possible.

This isn’t new by any means, but it seems to be gaining more attention for whatever reason.

In a way my focus this past month has been more personal because it’s how I’ve grown into adulthood and the different phases of life that people, CP or no CP, find themselves in.

Not every aspect of life comes with statistics, and even those that do come with outliers.

So, for now, and probably in the future, I leave you with more stories than statistics because you can find statistics somewhere else.

Life as an adult with CP is an oddity, a misconception which I brush up against every day, so although Cerebral Palsy Awareness month is over that doesn’t mean my efforts are over, at least not completely.

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All Cerebral Palsy related posts

Not All Pain Is The Same

Chronic Pain effects roughly 3 out of every 4 people with Cerebral Palsy. I’ve written about it before, because I am 1 of the 3 out of 4, and I get questions about it a lot.

I have a long relationship with pain, so long I’m not sure when it began. However, it’s changed over the last few years.

I’ve learned that not all pain is the same.

The pain I feel at the end of practice, a swim meet, or even just one race, is drastically different than chronic pain.

That pain, although usually more intense, fades away.

Chronic pain stays around for the long haul, it may fade, but it never goes away completely.

When I first started going to coached practices I was happy that my pain seemed to disappear as soon as I was focused enough on the task at hand, swimming, keeping my body afloat, while trying not to collide with another swimmer in the lane.

When I changed coaches and adapted a more intense training schedule I focused on the same task, especially since I was now sharing a lane with more than one person, and not wearing prescription goggles. But I also had to learn what a “real” workout involved.

Like, a good workout leaves you sore but able to function the next morning.

Some days it works out better than others, and there have been a few injuries along the way, both swimming and non-swimming related.

Chronic pain, still have the ability to leave me unable to function, but those days have been getting fewer and further between, thank goodness.

I’ve had people ask me if I was possibly worried that I would push myself too hard because I have chronic pain. To be honest I’m not sure what they think when they ask that question, but my answer has always been no.

I know what pain is, I can pretty much tell when I’ve had enough, and when I can’t my body tells me soon enough, a bruised scapula retaught me that lesson, and I won’t forget it anytime soon.

The truth is I take things too easily, at least at times, because the pain that I feel in the moment feels like it may be permanent, and I don’t want it to become permanent. It’s not until the discomfort subsides that I realize I could’ve done better, that I should’ve done better.

Sometimes I beat myself up about it, but most of the time I resolve to do better, or at least try to do better next time.

I may seem like an expert in dealing with chronic pain, but the truth is I’m still learning that not all pain is the same, even when most of it is chronic.

To Successfully Succeed

Confession: I can’t believe I haven’t written about this before. If I have and someone knows where the post is, would you be kind enough to post the link in the comments section. I’m not that great at virtual organizing so even if I did write something I can’t find it.

 Katy asked,
“How do you define success?”

 My answer to this question has very little to do with the fact that I have Cerebral Palsy, but I’m sure it colors my answer to some extent. I hope my answer gives you more insight into the fact that people with Cerebral Palsy are more like those without Cerebral Palsy than they are different.

This is question that’s like, “Describe your ideal summer vacation,” the answer changes depending on where you are in life. At 5 your ideal summer vacation is going to D!sney World. At 25 you’re just hoping you’ll be able to afford a summer vacation (we won’t go into how I feel about summer vacations these days).

If you asked the pre-college me & new college student me I would define success as being famous and having everything that goes along with it, or at least all the good parts you can think of (not the bad parts).

If you asked my recent college graduate self what my goals were she’d tell you she just wanted to finish the final projects and graduate. I never wanted college to end but I wanted to workload to end. I guess I’ve been a sucker for community longer than I thought.

These days my definition of success has changed a lot. I don’t want to be rich or famous. Nor will I feel unsuccessful if neither of those things happens, especially since that’s not how I chose to define myself anymore.

These days success comes in a variety of different packages.

A work day that involves minimal paperwork and I’ve reached daily goals I’ve set for myself as well as reaching the staff wide goals? Success. Making positive strides to live my word for 2013? Success. Networking to further my business? Success. Being able to pay my bills and have my insurance pay what they’ve promised? Success.

Things seem simpler now, not to mention more depressing now that I’ve written it, but it’s not really. My priorities have changed. It happens with most people, I’m guessing. It would be awesome to be able to travel more or take more “time off” but it’s not in the cards, at least in the recent future.

In terms of concrete things that I would like to be successful at, I would love for my business to do well enough that I’d be able to quit my day job and still be able to support myself. It would be nice to be able to be in a healthy relationship and maybe have a family, but right now I’m not planning anything other than being able to take care of myself. I’d really like to be one of the few small business success stories out there (Inquire if you dare!)

On the first day of classes every semester at least one of my friends would write, “I will do my best to successfully succeed,” it’s been something of a manta ever since. There are days when success is smaller than others, but it’s still success. What I really want is to succeed successfully throughout my life, meaning I want to do well without causing harm to anyone else, self-included.

*A similar version of this post was written on March 20, 2013

Disability & Athleticism

At the beginning of December I was sitting on the edge of the warmup pool debating my cooldown, it’s something I don’t enjoy, if we’re being honest. The warmup/cooldown area at meets is worse than a highway during rush hour which makes my dislike even stronger. The internet memes don’t lie. I literally have to talk myself into the water and keep telling myself to stay in for the good of my body, especially after 1 relay, 4 individual events, and a long ride home.

Before I dropped into the water, my preferred method of entry, I struck up a conversation with another swimmer. I didn’t know her at all (and I still don’t) but our conversation will probably stick with me for a long time (and will make me think again about using the warm down area).

She congratulated the meet organizers on including swimmers like myself in the event, even after I pointed out that it was in the rules that “swimmers like myself” be included in such events, because one must be willing to be an educational moment at a moment’s notice. She then went on to compliment me on how brave I was for being willing to overcome my obstacles and compete regardless.

At that point I just smiled, smirked really, and dropped into the water. There was nothing more I could’ve said at that time to change her prospective (and I don’t think I wanted to put forth the effort at that point either).

Last month I watched a video of various Paralympians discussing various misconceptions about para-athletes and it reminded me of that day in the warm up area.

 

Having a disability, especially Cerebral Palsy in my case, does not mean someone cannot be an athlete.

I work just as hard as my teammates, sometimes harder (according to them anyway), to achieve my goals.

I may be a person with a disability, but I am also an athlete with a disability. Someday I’d like people, who I don’t know, to think of me as an athlete before thinking about my disability first.