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

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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.

All Cerebral Palsy related posts

People, Not A Project

Although I did my capstone project on persons with disabilities it was to prove that people with disabilities aren’t a project for the Church to do but rather people who could contribute to projects within the Church’s purview. While I was concentrating on the Catholic Church in particular it isn’t a uniquely “Catholic problem.”

Most people don’t want to be someone else’s “project,” similarly people with disabilities don’t want to be the church’s “project.” PWD are not people you do ministry FOR, they are people you do ministry WITH. Disability ministry should be about doing church together.

— Ellen Stumbo (@EllenStumbo) February 25, 2018

 

It seems like a simple problem with a simple fix. However, it’s more layered than that.

Buildings aren’t accessible, the most obvious reason, but not the only reason.

Sometimes people are led to believe that they don’t have anyone who has a disability that attends their church, that is not true. There’s at least one person, and there are many more who wish to belong to your church but don’t for obvious (and not so obvious) reasons.

Decades of inspiration porn is another reason, it’s so engrained in the culture of so many churches that people can’t help themselves for wanting to put someone with a disability on a pedestal. “People with disabilities are more united with the sufferings of Christ,” “God chose them to be different to show us the beauty of life,” and such.

One might think it’s nice to be thought of in such high regard but at its core it separates those with disabilities from the able bodied.

If the goal is equality than the “special projects” and the pedestals within our churches need to be put away and everyone needs to look for ways to start the path to inclusion, because it won’t happen overnight.

I wish more people would recognize this problem within all churches. We’re people who want to work alongside people to complete a project, not the project itself.

On Being An Activist, Not An Inspiration

Typically I write and schedule my posts ahead of time. For someone with some of the worst time management skills on Earth, coupled with ADD, it’s just a better system (and why I can’t manage to post every day without some sort of help).

When the news broke that Stella Young died unexpectedly I changed my plans.

She wrote a letter to her 80 year old self, that people shared all over the place. I read it at my earliest opportunity, which happened to be the night I heard of her death. (I’ll spare you my philosophical and emotional thoughts on that).

Although I never got the chance to know Stella personally I feel a sense of loss with her death. I don’t want to go all, “We few, we happy few, we band of brothers,” but it wouldn’t be the biggest stretch of the imagination since the bonds of the disability community seem to run deeper than the everyday population.

There’s this thing that happens when you’re asked to give a speech, at least if you’re anything like me, you spend more time watching other people give speeches (and thanks to the interwebs this can go nonstop for days on end). You don’t really listen to the speeches either; instead you’re watching their posture, movements, what they do with their hands. Seriously, what to do with my hands always puzzles me.

I really wanted to find wheelchair (or crutches, walker, cane) users giving speeches & how they handled their time in the spotlight. What do they do with their hands? What’s their mic set up? Do they use note cards or have notes on their computer from behind a podium?

And I found Stella.

I watched how she presented herself AND her topic.

She made me laugh, not just because she brought humor to her talk but because there are some experiences that everyone with a physical disability seems to share, and if you don’t laugh about it the inner angry cripple isn’t going to become the outer angry cripple.

She’s also the one who introduced me to inspirational porn.

It’s also nice to see someone else out there who has a similar outlook on life and similar thought process, and has a bigger platform no less.

One of my favorite quotes from Stella is this, “I want to live in a world where we don’t have such low expectations of disabled people that we are congratulated for getting out of bed and remembering our own names in the morning. I want to live in a world where we value genuine achievement for disabled people.”

I don’t like living in a world where working incredibly hard to regain your physical baseline is seen miraculous. It’s not fair to the person with a disability or the one(s) claiming miracle, not to mention a big fat lie.

Stella wouldn’t like it if I ended this by calling her one of my inspirations, so I’m not going to do that. She’s not an inspiration, but she’s shown so many how to advocate and be an activist. That cannot be overlooked.

I read that Stella considered herself to be an atheist ever since she heard that there was only a stairway to heaven. So wherever she is now, if anywhere, I hope it’s universally designed I know many of you out there have no idea who Stella Young is so I wanted to give you a chance to get to know her the same way I did.

17 Things Stella Young Wanted You To Know

How Stella Young Wanted To Be Remembered:’Strong and fierce, not sweet or fragile’

*A similar version of this post was published on December 10, 2014

Let’s Talk About Porn

Having a blog and a podcast is an interesting experience. Granted I didn’t think I’d be podcasting for that long. I thought it would be a sprint rather than a distance event, which this venture has now seemingly turned into.

I wanted to share our latest recording, and for a few reasons (1) it’s an important topic, (2) I didn’t feel the need to write down what I’ve already said, (3) I want your feedback on the topic.

I’ve talked about inspirational porn before but being able to have a mainstream TV show address it in a relatable way opened a door for me to be able to see the topic in a different way.

Listen to H-E-R–HERO

How do you feel about inspirational porn?
Where or how do you think started inspirational porn?
Do you think inspiration porn started with Tiny Tim or someone else?
Did it start with the saints or maybe the life of Jesus Christ?
Do you think we’ll ever be able to get rid of inspirational porn altogether?

 

The Clichés Of CP

There a lot of crazy (and very untrue) things you hear when you have Cerebral Palsy. In fact it’s often hard to pick just one thing that’s the most untrue. It’s actually pretty funny now, but as a kid it gets really obnoxious. Clearly there are a lot of people out there who don’t know a lot about CP, or at least what they should know.

I wish I could divide comments by age and background; unfortunately they’ve come from all ages and professions (even doctors).

One of the most common things I get is that we’re all retarded. Yup, I’ve had someone come right out and ask, “So are you retarded?” right after I tell them I have Cerebral Palsy.

While it can be true that individuals with CP can also have cognitive issues it’s not true for everyone. Hence why I say individuals with CP, sometimes all people in the CP community have in common is having a diagnosis of CP.

I’ll just say one thing on the word retarded. If you use the word do yourself a favor and update your vocabulary. You’re not only insulting others, you’re insulting yourself. You may think you’re cool, in reality, you’re an idiot.

Another thing I get a lot is, “Are your legs broken?”  I’ve gotten this question (& even phrased as a statement) for longer than I can even remember.

According to my mother I once came close to beating up a boy over it, and I swear I don’t remember this at all. My legs are not broken. My body works differently than yours, which does not automatically mean “broken.”

“Where is your walker/wheelchair?” Not everyone with CP uses an assistive device. I do use a wheelchair on occasion but not on a daily basis. I’ve been out sharing a meal with someone and when I get up from the table they ask me if I need my walker.

Use your powers of observation. Look around. If you don’t see an assistive device nearby it’s probably safe to assume they do not need one (at least in that situation). The same goes for asking, “How do you walk?” if you don’t see an assistive device around, they walk just like you do.

“It’s amazing what you’re been able to accomplish.” I admit this is probably the newest most common statement and it takes me a while to realize what people are talking about. In fact I’ll often ask them what they mean by that; just because CP is seen primarily as a children’s condition that it goes away at 18. At the same time we’re not much different than our average peers, it was expected of me to go to college, graduate, and get a job, and support myself. It’s not amazing, it’s normal.

“You’re most likely to old to see any improvement.” This one comes primarily from medical professions, and it’s probably the most wrong. It’s true that there are no (or few) studies of individuals past the age of 18 but that doesn’t mean making gains doesn’t happen.

I learned to jump, climb stairs without assistance, and pulled socks off my feet standing up (among other things) in my 20s. It’s more a matter of practice and guided coordination than actual ability.

This is just the short list of things I’ve heard about my condition. I’m sure I missed a bunch. Feel free to include your own if you’d like.

*A similar version of this post was written on April 7, 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.

I Don’t Believe In Miracles

One of the things I always admired, and liked, about the Catholic Church, even when I walked away from it, was their necessity to validate miracles. The main reason being, I believe people overuse the word “miracle.”

I’ll give you an example; I’ve had to relearn to walk multiple times (3 or 4, I think). Each time was during a different phase of life with varying circumstances. The only constants were they were after surgery and it was declared a miracle by multiple people.

Here’s the thing, it only looks like a miracle.

There hasn’t been a single time, during any of those, when I’ve gotten out of bed and suddenly been able to walk without some sort of difficulty during any of those time periods.

That would be a miracle. That hasn’t happened to me.

A lot had to happen in 1 year, 1 month & 1 day (for example) for those first independent steps possible.

The hours of PT.

The hours spent doing an at home PT and hoping you’re doing it right.

The hours waiting for and/or attending doctors’ appointments.

The early mornings.

The sleepless nights.

The pain.

The countless days spent trying to appeal insurance denials.

The hours at the gym because you’ve maxed out your insurance.

The co-pays and out of pocket costs.

The time out of work.

The time away from friends and family.

The prayers.

The hope that tomorrow will be better than today.

Calling someone or something they’re able to do a miracle discounts the hard work they’ve put forth to make this so-called “miracle” happen.

I’m not saying that miracles don’t happen. There wouldn’t be a need for The Congregation for the Causes of Saints, for one thing, if there weren’t indeed miracles. But sometimes we’re quick to “cry miracle” without realizing that it took a lot more than you can imagine to make that miracle happen.

So next time you witness a miracle, take a minute and consider what might be behind that miracle before you make your declaration public.

Can Inspirational Porn Have A Part In Social Change?

My newest advocacy peeve is inspirational porn (in case you couldn’t tell).

I don’t really try to bring it up at any and every possible opportunity, but it happens anyway, somehow.

I was shown a video ad during physical therapy that I had actually seen a few days before and while I like(d) the ad I wondered if it had an inspirational porn quality to it. So I mentioned it.

“Don’t you think you’re being a little sensitive?”

Was I being too sensitive? (Maybe)

But I explained my reasoning anyway.

I also had to explain what inspirational porn is/was.

Then I explained my reasoning again, my thought being that if you’re going to work in the rehabilitation services industry and the like than you should be aware of the current (and lingering) issues of the disability community .

“I think you’re being too sensitive. That’s not what they mean”

Everyone’s entitled to their own opinion, as they say.

Days later I was still thinking about the conversation. I wasn’t thinking about whether I was being too sensitive or not. I wasn’t thinking about how everyone seemed to miss the point of what I was trying to say.

Does inspirational porn have a purpose?

I’m not saying that I’m now OK with inspirational porn. Nor am I saying that there should be an increase in its production. I stand firm in my stance that any and all inspirational porn must stop.

But can it have a part in social change?

Can something that someone with a disability sees as inspirational porn (like a commercial or news story) be used as a tool in engaging the non-disabled community in realizing the issues faced by the disability community?

I think I’m coming to realize that as long as it starts a conversation there’s value to be had. Once you start a conversation, on a separate issue (maybe), then you can address the issues of inspirational porn later on.

What do you think? Can inspirational porn have a part in social change?

*I’m a fan of Scott Hamilton and what he does on and off the ice but this now famous quote that’s attributed to him is one area in which we have to agree to disagree.

Truth Or Porn?

I always try to make a conscious effort to tell the truth but be as positive as possible. However I’m not perfect and my intention ends up being just that, an intention rather than an action.

An all too common problem faced by the disability community is inspirational porn.

If you’re not familiar with inspirational porn let me enlighten you inspirational porn is using someone’s disability to make the non-disabled feel better about themselves or trivializing a person’s disability.

The other day I posted a picture on my Facebook page that I’ve shared before because I thought it was an interesting take on Cerebral Palsy. But after I posted it I had second thoughts.

“Is this inspirational porn?”

I agree (with most of the disability community I think) that inspirational porn must end AS SOON AS POSSIBLE. I understand the intention in most cases but the execution is just so far off that the whole thing needs to end.

We’re more alike than we are different than our able bodied counterparts it’s time to be taken off the pedestal we’ve been put on and stop being objectified to make others feel better about themselves.

What do you think, are these images truth, or porn (or both)?