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

Advertisements

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)

Telling The Story You Have Ownership Of

During my Q&A in my capstone presentation I was given a piece of feedback that is still sticking to me, like flypaper.

“It would be nice if you incorporated more stories in your website like the ones you just shared with us.”

This wasn’t the 1st time this was suggested to me, so I responded appropriately (or what I felt was) inside I was like this:

inside-out-riley-eye-roll

I understand stories need to be told but if they don’t belong to you, you have little, if no right, to tell them.

Although I read it all the time, it makes me uncomfortable when stories are told about someone, a child, sibling, spouse, etc is being told without their consent. I wonder what they would think if they knew?

Mostly I wonder what a child will think about their parent telling everyone about their lives before they ever knew what they were doing.

I understand that stories need to be told, I won’t be a writer if I didn’t, but where’s the line?

I feel like anyone with a keyboard can call themselves a writer these days.

giphy

It sounds great, but what’s the real price tag?

At what point does sharing information become exploitation?

There’s an argument that true journalism is dead. I wonder if blogging has contributed to this. These days it seems like everyone has an agenda, meaning impartiality is gone.

I’m not saying that we shouldn’t tell stories. What I’m saying is that you should tell your story, especially when it comes to blogging. A child, for example, is under your care but when they grow up they’ll have to handle what you’ve said about them, because if it’s on the internet it’s quite possible that it won’t go away.

Tell the stories that you have full ownership of, yours.

Is Blogging Dead?

I started blogging when it wasn’t a popular thing to do. I didn’t really read other blogs, if I did it was because another blogger left a comment on my blog first. It wasn’t until I was out late one night for a cast party when the director confessed that he often spent hours every night reading random blogs, literally random, he rarely read the same blog twice.

It was only a few years later that my bookmarks were full of blogs, which I checked before starting my day, every day. At times it took up so much time that I was almost late to class on multiple occasions.

At some point I stopped reading my laundry list of blogs and moved on. I’m not sure why but it’s how it happened.

However, I knew the power of blogging. So much so that I compiled a list of blogs that were similar to mine in one aspect. Mainly because I wanted other people to be able to find what I wanted to see for years.

Every once and a while I’d check in on a blog or two that I used to visit daily (or even multiple times a day if called for) to catch up on what’s been going on with that individual, or their child, or their family, or some mixture of any of it.

Some have disappeared. Some of their authors and/or their children have even died.

Some haven’t been updated. Some are still around, a few are even thriving, but it’s not the same as it was.

I suppose it’s a good thing, but I wonder what the downsides are.

These days it’s rare that I read any blog on a regular basis.

These days I grab my phone, 99% of the time before I’ve even gotten out of bed and scroll through social media platforms. I scroll so fast I doubt I’m actually reading anything, unless osmosis is indeed possible.

Some of my blogging friends have turned to Inst@gram I feel like that’s become the new blogging in some ways. I miss the blog posts, but I appreciate that Inst@gam is probably a better fit for their lives these days.

One of my biggest issues with social networking platforms is that I can’t compile a list of people in similar life circumstances that I can with blogs, even if I make a list it’s hard to let others know about it in the same way you can with blogs.

It’s difficult to foster the same type of environment on social media platforms as you can with blogs and the opposite is true as well.

And given how the internet & other technologies have evolved over the years I keep coming back to one question:

Is blogging dead?

My first instinct is to say yes. But upon deeper reflection I’m more inclined to say that it’s just not how it was. It’s just evolved.

#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.

cropped-cropped-14457416_1201462926578091_6244959963288890507_n13

All Cerebral Palsy related posts

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.

 

Not Rare, Nor Diseased

Rare Disease Day is the last day of February. Around that day a few people sent me messages wishing me a “Happy Rare Disease Day,” I appreciate the sentiment, but it’s uncalled for.

Although the media, even credible news outlets can mess it up.

Cerebral Palsy is not a disease.

It is a neuromuscular disability that effects movement, like motor skills.

It can also affect senses, like hearing and/or vision.

It is permanent, but symptoms can change.

It effects each individual that has it differently.

There are 4 main types of CP.

It can affect anywhere from 1-4 limbs.

There are treatments, but no known cure.

It is not rare.

The prevalence of CP is 1 in 323 U.S. children, and over 17,000,000 people worldwide.

It is the most common childhood disability.

CerebFig.2

Why I: Don’t Suggest Giving Up Social Media For Lent

There are certain things I can count on as Lent approaches. Without a doubt, “What are you giving up for Lent?” is the most popular question to ask and/or be asked.

Now that social media has become such an important part of our lives it’s natural to consider whether or not to give it up for 40 days. I have several friends who engage in this practice, problem is most of them don’t use social media that much anyway. So is it really that sacrificial or are they really getting any benefit from it?

A point worth considering, but not the one I wanted to make right now.

As I write this there’s a snowstorm outside (I’m a write ahead & schedule blogging type). In fact at one point it was snowing so hard that it was snowing sideways. Thus my plans for the day have been canceled and I’m attempting to stay occupied indoors. In a way it’s going to make the point of this post much more poignant, at least I hope so.

The internet, and social media, has opened up everyone’s world. What I don’t think a lot of people realize is just how much it’s opened up the world for those with disabilities.

I wouldn’t be friends with many people if it weren’t for the internet, or at least I wouldn’t be as good of friends with people if things didn’t start on the internet. Let’s just say as an introvert with a disability it’s nice to get the “getting to know you” stuff out of the way when you only get to see people in person a few times in your entire life.

I can’t forget to mention Sara. If there’s anyone who taught me that just because you have physical limits doesn’t mean you can’t create solid friendships and an intentional community. Our friendship may have been short but it left me forever changed.

I don’t suggest giving up social media for Lent for one quasi-simple reason:

You may be part of someone’s community, and it may be the only community they have access to (especially in the winter months).

Giving up your social media routine for 40 days may seem like a good idea and in some ways it can be beneficial but if you do consider who you’ll be leaving behind for 40 days.

Here are some thoughts to consider:

How much can happen in 40 days?

Also consider your group of friends, do they also give something(s) up for Lent?

Do you all give up the same thing for Lent? If so, do you still have that same sense of community because you have other ways of keeping in contact or are you able to see each other in person?

Do you have one friend (or maybe more) that seems uncomfortable with your plan for a 40 day social media fast?

Have you ever stopped and really considered why someone is resistant to give up social media (especially if you “only” know them virtually)?

Lenten sacrifices are meant to make you a better person, but not at the expense of other people. If your sacrifice is harmful to someone else than are you really working towards a greater communion with the Body of Christ?

Alternatives to consider:

Cut back on your social media practices. Check in once a day or once a week.

Post the same thing on all of your social media accounts (idea borrowed from Pat Padley FYI).

Keep community connected through email or text, or an old fashioned phone call.

Make your intentions known early on, as in before today, so if any of your friends have reservations or objections you can engage in thoughtful conversation.

Have a way to contact you on your social media profiles and make it easy to find. Have you ever received an “out of office reply” with a contact email or number included? Like that.

I’m not saying that you absolutely shouldn’t give up social media for Lent.

I’m not God, Jesus, or the Holy Spirit so I can’t say such things with absolute conviction. But I wish people wouldn’t make the decision as easily as they seem to. Virtual community isn’t the same as in person community but it’s still a community that needs nurturing, attention, and people to take part in it.

*A similar version of this post first appeared on an old blog on February 10, 2016

When Liturgical & Secular Collide

Last year (in particular) I had to juggle multiple schedules. The concept isn’t a foreign one, everyone does it every day, at least in the majority.

Although I doubt a liturgical calendar is one people rarely consult, unless they’re Catholic.

However, it’s one I had to basically live by, not counting the fact that the Church also lives by it.

There’s a certain amount of freedom that comes with not having to worry about commitments tied to a calendar (and then having them be graded) and I’d be lying if I didn’t say I was enjoying it, especially when the following post started appearing on social media:

26111932_921079451375131_6949576866082692673_n

For those of you not familiar with Lent things can get complicated when the liturgical period overlaps with secular holidays, and even birthdays.

My birthday fell during Lent during college, my 21st birthday no less, my roommates planned a party for me (due in part because I was the only 1 of the 4 of us who had a birthday during the school year). It seemed like it was going to be a huge party, at least in terms of what I can handle for a big event, but it was during Lent.

Lent is a time when people tend to give something up (or do something enriching) for 40 days. My friends gave up drinking or sugar and/or took up a stricter practice of personal prayer, so the party ended up being more like an open house for all our friends. Whoever wanted to stop by did, and I took calls from friends apologizing for not coming by, but it was Lent, and they made a commitment.

I understood, some of them I envied in fact.

Why envy? Because some were making and keeping commitments I knew (and know) I wouldn’t be able to keep (even all these years later).

There’s often talk, and concern of what Catholics should consider a higher priority, the Catholic world or the secular world. I understand it and don’t at the same time. It’s an issue of balance, and that looks different for each person, not to mention personal values and priorities.

I, personally, like to see what happens when Liturgical and Secular collide. I like to see what others do, or not. It’s fun for me, albeit in a weird way, and it helps me figure out my own feelings, priorities, and whatnot.