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

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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 September 28, 2016

#SayTheWord

Language & disability is a hard thing to navigate there’s no right thing to say, or right way to discuss it, that will make everyone happy.

I have varying points of view on the subject myself.

However, there’s one aspect disability language I do have a firm view on and I don’t see it changing anytime soon, if ever.

Disability is not a bad word.

Somehow it became a bad word, a word people avoid using whenever possible, even if it means coming up with terms like “special powers,” “differently abled,” or “physically challenged,” which for the record bother me far more than the word “disability” ever has and probably ever will.

One of the blessings of my degree program is the community that comes with it. We aren’t a bunch of people sitting behind computers interacting with each other, basically we are, but there’s a community aspect that I don’t think you get with other online degree programs.

One of my classmates in particular is involved in special needs ministry and had plans on discussing things for a while but never got around to it until I appointed myself the “good bye committee” since I totally sucked at being the “social director.” It just goes to show you should never appoint an introvert a “social director” without their OK.

We talked in the dark hallway, literally, for a while.

She wanted to know what was so bad about “special needs.” I pointed out that my needs were not any more special than most people’s. Also the feeling that I have that “special needs” has a shelf life and creates an awkward situation in terms of self-advocacy.

If you’re 3 and say you have “special needs” people will probably have a clue as to what you mean or they’ll at least be understanding on some level.

If you’re 33 and say you have “special needs” people will probably think something completely different, and along the lines of “diva,” “high maintenance,” and difficult to deal with.

She understood my point after that, but wasn’t ready to embrace the word “disability,” because it’s a bad word.

I pointed out that people, largely people without disabilities themselves, made it a bad word. It wouldn’t be a bad word if so many people didn’t insist on treating it as such, however it still states the truth regardless of personal feelings.

I read a tweet recently that puts things nicely:

Not long after this conversation with my classmate I noted #SayTheWord on social media. While I can’t say I agree with everything that’s been attached to the hashtag (but can anyone say that about any hashtag?) I do think it’s about time we have the conversation.

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

Trust & Disability

Having a disability can create a whole host of trust issues, but I’m not going to talk about any of that. I’m sure plenty of people have said plenty on the subject already.

After an already full day and then hitting the gym I tried not to look like a hot mess (although I probably stank of airplane & gym sweat) I went down to the hotel lobby for something to eat. Knowing my history of stomach issues after a travel day I wanted something small so I settled for eating at the bar rather than a larger meal at the restaurant.

Typically I hang back and people watch before making my approach, especially if I’m in my wheelchair and I have to interact above eye level (like a bar). But I didn’t see anyone ordering or eating at any of the tables so I was on my own.

I ordered my food and told the server (or bartender?) that I’d be at a nearby table when she brought out my food I asked if I should her or at the bar when I was finished. She said something to the effect of, people usually pay when their food arrives, but it was OK because she trusted me.

I didn’t think anything of it in the moment, probably because I’d been running on fumes for hours, but then I thought about it.

She trusted me. Great.

But why?

(Call me a skeptic.)

I watched everyone around me while I ate my meal.

She didn’t seem to “trust” anyone else, nor did any of the other staff.

I couldn’t help but think (and still think) she trusted me because I have a disability; that I use a wheelchair.

Because someone in a wheelchair won’t even think of stealing, never mind actually do it (and full disclosure I did consider “forgetting” to pay when no one was looking just to prove a point, but I had no interest in going to confession the next day so I didn’t).

Someone in a wheelchair wouldn’t think of stealing; just like people with disabilities can’t possibly be attractive.

I’m sure no harm was intended on her part, and many people who read this will probably think I’m being oversensitive, but the reality is she’s been taught in some fashion to believe that people with disabilities are different than those who are able-bodied. And by treating me differently than everyone else who had a bill to pay she’s furthering the misconception that those with disabilities are “different” and/or “less than.”

I have news for you; people with disabilities are capable of stealing too.

We’re capable of a lot of things, just like the able-bodied.

We’re not all trustworthy.

We’re not all nice.

Some of us have left bills unpaid (intentionally and unintentionally).

Some of us can be rude.

Some of us are attractive.

Just like everyone else, because we like to include ourselves in the “everyone else” crowd.

It’s nice when someone extends a kindness towards another person, but if you won’t extend the same kindness to someone else, then please don’t. Everyone desires to be treated equally, regardless of ability.

If you wouldn’t trust an able-bodied person to pay a bill after the fact, for example, then don’t trust a disabled person (whatever your rationale for that might be). Also it’s not the best idea to go against company policy, if there is one, just in case you end up losing your job because you felt bad for someone who doesn’t need the pity.

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?

The only disability in life is a bad attitude

*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.