New Gloves

80 words

1 minute read

For  the first time since high school, I've got new wheelchair gloves!  (Really, biking gloves, but they serve the same purpose.)  I'd seen a post about the good quality of these gloves in particular, and I love how padded the palms are.  Fellow manual chair users who use biking gloves for a bit of protection - seriously check these out.  Affordable, good quality and true to size.  Find them here.

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Kanye West Stops Concert Until He Gets Proof That Disabled Man Uses a Wheelchair

465 words

4 minute read

I've been seeing this moment circulated around a lot of social media recently, under a variety of headlines.  Some people believe it is being blown out of proportion because "Kanye didn't force the man in a wheelchair to stand up and dance," as some headlines might lead readers to believe.

However, as a disabled person, that's not what I take issue with.  I doubt there is anyone with a physical disability who hasn't been in that awkward situation where we're in a large audience and the audience is asked to stand up.  It's just one of those things we learn to deal with.  We realize that we can't and wait through the National Anthem, with our hand over our heart, hoping Lady Liberty will understand we mean no disrespect.  Maybe we sit a bit straighter, if possible, trying to convey that we respect the moment, the country, the speaker, too.

That is not the issue.

The issue is that Kanye West took it a step too far in sending a body guard out to the audience to prove that the man who didn't stand up was in fact in a wheelchair, after complaining about how long he had to wait to continue his set.

How completely mortifying.

No one should have to prove the legitimacy of their disability, especially at a public event they paid to attend.  It's hard enough for us to get to public events like concerts in the first place.  (Not saying this for sympathy but because of simple logistics.)  We have to be sure there is accessible seating available, find a vehicle big enough to carry our wheelchair (if we can't drive.)  And we have to hope that when we get to the venue, it actually is as accessible as it says it is.  Are its elevators big enough?  How about its restrooms?  Does its accessible seating have room for you and a friend or two to sit or do you all have to split up, and still try to enjoy the night?

The sad thing is, when I heard about this, I wasn't shocked.  I wasn't surprised.  Because things like this happen far too often.  This isn't about singling out Kanye West, it's about able-bodied people recognizing that they don't have the right to demand to authenticate our circumstances and the state of our bodies before their public event can continue.

How many people at that concert used crutches or a cane?  Or no mobility aid at all but for whom standing for an entire song would be utterly exhausting?  See where it gets grey?  Not all disabilities are visible.

So, next time, I hope Kanye West will simply invite his audience to stand, and leave it at that.

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The Issue of Patronizing

343 words

3 minute read

(My sis and me on the first day of second grade)

The issue of being patronized to as a disabled person is serious and real.  I recently saw a post on Facebook where a fellow disabled woman remarked that she was sick of people calling her beautiful.  One response was apologetic, a few asked what she would rather they say, but most made sarcastic remarks, one insisted on continuing to refer to her as beautiful and one called her ungrateful.

It brought back my own experiences with similar remarks.  In second grade, I was called "so cute" (in the way that puppies or babies are) by a fellow seven-year-old classmate.  Two years later, my teacher came up with a particularly off-putting nickname for me: Princess.  Neither acknowledged my requests to not be referred to in those terms, or my discomfort at them.

So, what do we, as disabled people learn, when able people in our lives disregard our requests or our discomfort?  We learn that you, the able person and your intentions, mean more than our feelings.  I hear it all the time, and I saw it in regard to the Facebook conversation: "But I mean well!"

Maybe you genuinely believe that.

But before you defend your actions, think of this.  If a fellow able person told you they were not comfortable with language you used about them, chances are, you would listen.  Because you would receive them as whole people, who are capable of making decisions about what we want and don't want.  

If you "mean well" but refuse to listen to us and honor our requests about the language you use to refer to us?  You don't actually mean well.  You mean to keep us small.  You mean to look at us through a narrow lens.  You mean to choose to dehumanize us rather than choosing to respect us as human beings with voices and opinions.

Whether a disabled child or a disabled adult, we are all worthy of that.

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Life in Central America

514 words

4 minute read

Playing under laundry baskets with a little girl in Central America.  2001.

When I was 19, I wanted nothing more than to go on a mission trip.  I was really into church, and mine was into serving in other countries, but I remember feeling hesitant.  At a previous church outing (a camping trip with my confirmation class at a previous church) I got to go, but there was a woman I didn't know who had to go as well.  Just for me.  To be sure I was okay or something.  It was strange and I felt relieved when a longtime friend helped when I needed it, naturally, and without complaint.  (Impressive for a 14 or 15 year old, which we were at the time.)

Needless to say, I didn't want a repeat of having some random person along just to watch me.  It felt weird.

The mission trips were announced.  One was going to Ukraine, another to Central America, and even more places that I can't recall now.  Long story short?  I made my decision based on the fact that the Central American children's home was run by my friend's uncle, who also used a wheelchair.

I did the work.  Got accepted for the trip.  Raised the money.  And off we went.  There was no awkward third wheel this time. When I got off the bus at the children's home, all the kids were excited to see that I was "like Mike" who they saw every day.  The kids (thanks, in part, I'm sure, to Mike) accepted my chair as quickly as they did me.  They played peek-a-boo behind it.  They pushed me and each other in it.  They took rides on my lap, and even on my foot pedals.  One little girl did ask what was wrong with my legs, and though I was familiar with Spanish, I didn't quite have a strong enough grasp to have such a conversation.  So my team leader (and Mike's niece) said: "I don't know how to explain it, but it's not a problem for her."  

The thing is, it wasn't.  It was as normal for me as it was for Mike.  And I got to spend nine tumultuous, interesting, enlightening days on a trip that affects me to this day, in positive ways.  I didn't need a third person hovering, like I had to have years earlier.

In fact, the difference was never made more clear to me than when I was cruising down the steep, unfinished sidewalk to one of the children's homes, near Mike, when my chair tipped over the edge into the grass.  Nobody freaked out.  Nobody came running.  Mike just asked over his shoulder, "You okay?"  I assured him I was, got up and kept going.

Though not always common, or possible, if you want to do something, and you're disabled, try finding someone else who is, too, who is already doing it.  That level of understanding can't be taught, or bought.  And it made my whole experience that much better.

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Life Before The Wheelchair

225 words

2 minute read

I was thinking today, "What did I ever do before I got a wheelchair?" and then I found this picture.  That's me at six (possibly seven) years old.  And that's definitely a stroller.

The thing is, though I do remember being a bit self-conscious (after all, one of my brothers, to my left, is also in a stroller at 18 months) I also remember loving it.  It was really comfortable and sturdy, and being as small as I was, it never felt like a tight fit.

I love finding pictures like this and fully realizing all the ways my family adapted for me.  (You can even see the edge of my walker hanging on the back of my little brother's stroller.)  Nowadays I don't know if a stroller would be seen as an acceptable adaptation in lieu of a wheelchair, especially for a seven-year-old, but this was the 1980s.

And being able to come with my brothers and sister and cousin and have cotton candy was all that really mattered to me.  We must have looked like a strange group: at least two adults, five kids under seven, two strollers and two wagons?  It was a regular parade.

But I remember being happy because everyone got to ride instead of walk, not just me.

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How Are Video Games Biased Against the Disabled?

109 words

1 minute read

This video was suggested to me by a friend.  While not something I thought much about, that is largely BECAUSE a lot of video games have become inaccessible to me over the years.  I used to play Nintendo in the '80s and Sega Genesis in the '90s, but now, with the Wii, and other video games that require physical actions in order to play?  It's all but impossible for me to consider playing.

So while I'm not hugely into video games, I am all for their being made more accessible so all of us can enjoy them, too.

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Frustration: Doctors and Pretenders

406 words

3 minute read

Doctors' Ignorance Stands in the Way of Care for the Disabled (an article written by Leana Wen) wasn't shocking for me.  Especially having gone to the doctor myself recently (and having to make appointments for wheelchair evaluations.)  At my appointment last week, I pointed out that though my symptoms could have been caused by my disability, they usually presented when people with CP were older, I suspected another cause.  His response was, "Okay," like he was taking in new information.

Though they're preliminary tests showed nothing, I was lucky that further tests revealed that my hunch was correct.  Today I'm on day four of a seven-day course of antibiotics.

It's why it irked me a bit extra when I read Here Is an Able-Bodied Man Who Identifies as a Man With a Disability (written by Rick Juzwiak.)  Because while I am making appointments, spending hours on the phone trying to find places that are in the network of coverage for my insurance, in order to get a new wheelchair, this guy can just get one.  He makes enough money that he can drop $2,000 on something he doesn't actually NEED.  In order for my insurance to cover a new one (because there's no way I can afford one on my own), I need a doctor to refer me to a physical therapy evaluation.  I need to make sure I find a doctor at that clinic who is covered, coordinate transportation, go in, then call the clinic which will do the PT evaluation. (The second one, because after I scheduled with the first, they called and informed me that though I was referred to them, my insurance didn't cover it.)  And on and on from there.

Ironically, though, men like that, and women like this never get confronted.  They can go on their merry ways, taking advantage of the things that make our lives possible, and they don't deal with people telling them they're not disabled enough to qualify for what they don't need, when we are often made to do a ton of preliminary things just to get what we need to make our lives possible.  We have to go to the doctor, to have them refer us to get what we need, but when we do, the reality is, they probably won't know the first thing about our disability or how it affects us.

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