Muscular Dystrophy Mike

I’m sure glad that that which makes me crippled isn’t contagious. Life would sure suck if it was.

That which makes me crippled would then become the indelibly central feature of my name and identity. I’d be like Typhoid Mary.

That which makes me crippled is called spinal muscular atrophy, I think. I don’t really know or care. It is what it is. When I was a kid everybody called it muscular dystrophy. So if I was contagious, I’d be known as Muscular Dystrophy Mike. That has a catchy, alliterative ring to it. It’s much easier to remember than Spinal Muscular Atrophy Mike. And this would be vitally important to remember, if I was contagious, because permanently attaching that which makes me crippled to my name would serve as a warning to innocent citizens everywhere to stay away from me, lest they suffer my fate.

If I was contagious, I trust that there are many liberal people who would stand up in defense of my human dignity. They would demand that I be referred to in “people first” language. Put the name of the person before the name of the diagnosis and call me Mike Who Happens to Have Muscular Dystrophy, so as to emphasize the person first. I mean, contagious people are more than just contagious. They have hopes, dreams and aspirations, just like the uncontagious. They should be judged by the content of their character, not by their potential to spread lethal pathogens.

Look at poor Typhoid Mary. What does anyone remember about her other than she gave a bunch of people typhoid as was quarantined for it? For all we know, she might have been a great cello player. She might have been able to communicate telepathically with whales. We don’t know and that’s my point. As soon as someone is hung with the label of contagious, we all rush to demonize them.

Imagine if everything that makes cripples crippled was contagious. Beside Muscular Dystrophy Mike, there would also be Down Syndrome Debbie, Bipolar Bob, Alzheimer’s Annie and Lou Gehrig's Disease Lou. The sanitariums would be teeming.

But through the grace of God, none of us are contagious. But that’s no guarantee we won’t be quarantined anyway. People who are schizophrenic aren’t contagious but they’re locked up in asylums all the time. A lot of people who are crippled for the same reason I am get locked up in nursing homes. It’s usually because they can’t wipe their own asses and they can’t afford to hire someone to do it for them. I guess that freaks people out as much as if we were contagious.


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Bathroom Standoff

Sometimes the double wide cripple stalls in public bathrooms are occupied by a homeless person. The same is true of those double wide outdoor cripple port-a-potties.

And I get super frustrated because I know that the homeless person is probably camped out in there for the long term. And my first instinct is to bang on the door and pull rank. “Come outta there! I gotta pee and you’re occupying my space! Cripple trumps homeless, dammit!” But then my second instinct is to feel ashamed of having such a shitty first instinct. If it was some douchebag businessman hogging up the cripple stall, I’d gladly bang the door down. But that homeless person in there, like everyone else, is just looking for a place that’s warm and safe and comfortable. And the cripple accessible stall or port-a-pot may be their best option, especially for free.

And that’s when I get super frustrated because the fact remains that I still gotta pee. And I can’t hold it in until we address all the political inequities that created this situation in the first place.

So what do I do? I don’t want to involve the authorities because I know how they’ll react. If I press the issue, they’ll resort to evicting the homeless person and all their possessions. But that plays right into the hands of the oppressor. He wants us to blame each other for impeding our progress. But he’s the one who caused this conflict. That homeless person isn’t camped out in there just because they feel like fucking with cripples’ heads today. But where else are they gonna go? If the oppressor gave a shit, he shouldn’t have a hard time creating spaces that are more safe and comfortable than a putrid port-a-potty.

The long term solution of the authorities is often to lock the accessible stalls and port-a-potties so that neither cripples nor homeless people can use them. That way, the oppressor gets to fuck over two for the price of one. I was strolling through the National Mall in Washington, D.C. one day a few years back and I felt a sudden urge to pee. There was a line of about 50 port-a-potties that were placed there precisely for occasions like this, but the four or five cripple accessible ones were all padlocked shut! I had to go find a fucking Starbucks!

A crippled buddy of mine told me he recently landed at JFK airport and he really had to pee. But all the cripple stalls were locked! Fortunately for him, he can sort of stand and walk enough to use a standard stall.

So what do I do when I find myself in this kind of bathroom standoff with a homeless person? Well, if it’s a public bathroom, I go use a wall urinal. I realize that when I do this, I’m copping out by asserting my male privilege. I know I’m not doing anything to confront the oppressor and address the root cause of the problem. But when you gotta pee you gotta pee.



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Drooling Barbies

In 2017, the Mattel Toy Company committed a heinous act of cripple genocide.

Twenty years earlier, the company started making a Barbie doll friend that used a wheelchair. They gave her the cornball name of Share a Smile Becky, but at least it was something.

But then some kids started complaining that Becky’s wheelchair was too wide to fit through the doorways of Barbie’s fucking Dreamhouse. And Becky’s long hair often got tangled in her wheels.

So how did Mattel ultimately respond? They stopped manufacturing Becky. Just like that—poof—she was gone! So long! Adios!

Whatever executive made that decision must’ve derived a certain sadistic pleasure from it because it didn’t have to be that way. Mattel could’ve started making Becky as upright and bipedal as all the other Barbies and pronounced her cured. But no, they had to go and kill her off. They had to make an example out of her. It delivered a harsh message to all the ungrateful spoiled brats about what happens when you complain too much.

Okay I guess it wasn’t technically genocide because Mattel allowed all the Becky dolls already in circulation to continue to exist. They didn’t send their stormtroopers door-to-door ransacking little girls’ bedrooms, confiscating their Becky dolls and hurling them into a bonfire. They were content to let Becky dolls become extinct by attrition.

But now Mattel says that in the fall they will roll out not just one but two new crippled dolls. One is in a wheelchair and one has a removable prosthetic leg. Mattel says it’s their way of reflecting the full spectrum of human diversity.

So I suppose they think that makes up for everything, huh? We’re all just supposed to forgive and forget what they did to our crippled sister Becky.

But I say hell no! Don’t let them off the hook. Now is the time to bitch louder than ever!

If Mattel wants to represent the full spectrum of human diversity, they can’t just plop a doll in a wheelchair or give one half a leg and say they’ve got cripples covered. There’s a full spectrum of human diversity among cripples too.

Mattel ought to be making an extensive line of crippled dolls. What about a blind Barbie? A deaf Barbie? A Barbie with hemophilia?

A dwarf Barbie? A Barbie with a trach in her throat? A Barbie with Obsessive Compulsive Disorder who’s constantly washing her hands? An autistic Barbie? How about a Barbie that drools? I know the technology exists to make that doll. When I was a kid there was a doll that cried real tears. All you had to do to make tears was remove the hatch on the back of the baby’s skull and fill the chamber with water. The same principal can be applied here, except you fill the chamber with spit.



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A Self-Care Coma

Some people are big advocates for making video games more accessible for cripples. I’m afraid they will succeed.

I know it’s a sour grapes thing. It’s true that it’s hard or impossible to push all those video game buttons and flip all those switches if you don’t have much hand strength or dexterity or if you don’t have hands at all. But so what. That’s good. Video games are a colossal waste of time. You fritter away half your adult life striving to reach the 57th level of Intergalactic Dragon Quest and when you do what have you gotten out of it, besides carpal tunnel?

Or at least that’s what I tell myself. But I think the real reason I’m glad video games are inaccessible is because if they were accessible I’d be tempted to play. And once I get started I might not ever stop. I’ll get addicted fast. I know how damn competitive I am. After emerging from a stupor after a weeklong binge, I’ll hate myself and vow to seek help. Then I’ll go do it again.

I feel the same way about hammocks. Maybe one of my brawnier pit crew members could lift me into a hammock. But those things sink down so low that it would take the Army Corps of Engineers to lift me back out. So I’m glad hammocks are inaccessible because those things look so goddam comfy that if I ever laid in one I might never get up.

I avoid video games for the same reason I passed up many opportunities to take acid in college. I was deathly afraid I’d enjoy it too much. And once I start really enjoying myself, look out! There could be no turning back.

That’s why I never take long vacations. A few days of r&r is all I dare. I‘m also afraid of massages because self-care terrifies me. I have to partake of it in small, precisely measured doses or I could easily slip into a self-care coma and never snap out of it. I could become catatonic. The older I become, the more the risk of that happening increases.

I’m also fortunate that I can’t get myself out of bed in the morning without assistance. One of my pit crew members must physically evict from my bed. If things were otherwise, I don’t think I would ever get myself up. Bed is too damn warm and cozy.

It’s probably also good that I don’t have a lot of money. If nothing else, that would get me out of bed sooner or later. Only rich people can afford to stay in bed every day.



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Millie the Millipede and Her Stages of Grief

Once upon a time there was a millipede named Millie. Millie was probably the happiest little millipede that ever was. She really enjoyed having a thousand legs. And she really made the most of it! Millie entertained all her fellow millipedes with her amazing feats of agility. Millie could play doubles tennis while simultaneously playing a dozen pianos and ukuleles, juggling fifty balls and dancing an entire chorus line. She was well known in millipede circles as the supreme queen of multitasking.

But then one dark day something terrible happened. Millie was injured when a giant foot came down from heaven and nearly squished her. The foot delivered a glancing blow but nevertheless it tore off 26 of Millie’s legs. Millie was devastated. Not only did this terrible freak accident extremely hamper her mobility and agility, it plunged her into a deep identity crisis. Could she still proudly call herself a millipede if she only had 974 legs? Millie felt like a freak.

Some of other millipedes teased her and called her names, like Stumpy. Others took pity on her. They saw her as an innocent victim of a random accident that could easily befall any of them. There but for the grace of God go them. But some of the more maniacally religious millipedes shunned Millie. They didn’t believe in random accidents. God often sent giant feet crashing down from heaven to express his displeasure with millipedes, sometimes in thundering stampedes. Since God doesn’t make mistakes, those squished or maimed by giant feet obviously did something evil to incur his divine wrath.

After losing 26 legs, Millie went through many stages of grief. First, there was depression. Millie drank excessively, sometimes as much as 125 bottles of whisky at once. Then she entered a buoyant stage of denial. She was highly motivated to prove to all the other millipedes and to herself that she was still just like them. She wasn’t going to let having 974 legs define her! So Millie got fitted with 26 tiny prosthetic legs. When Millie re-emerged in millipede society standing tall on her new prosthetics, other millipedes praised her for her bravery.

But deep down inside, Millie still felt discontent. Whenever she came home at night, she immediately shed her prosthetics, like she was shedding a clunky suit of armor. Millie preferred going au naturel like this, as she called it. Millie had learned to zip around effectively and efficiently by lying on a tiny skateboard, which she propelled with her 974 legs. Sure, when she went out in public on her skateboard, other millipedes with their full complement of legs strained their necks staring at her or trying not to stare. But Millie didn’t care. She was much more comfortable and mobile on her skateboard.

So Millie entered the final stage of grief. Sociologists refer to this euphorically liberating state of mind as the fuck you stage. From then on Millie bopped around town on her skateboard and without her prosthetics because that’s how she felt most comfortable and free. And if any other millipedes didn’t like it, Millie flipped them the finger, 974 times.

And Millie lived happily ever after.


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Making America Less Annoying

We’ve come to such a point of national crisis that, as citizens of this great country, we all must ask ourselves a serious question. And that question is, “Am I going to run for president of the United States?”

Personally, I’m still undecided. But I do have a bold platform that isn’t afraid to take on issues none of the other politicians are talking about. And I have a great slogan: Make America Less Annoying.

Who could possibly be opposed to that? Only a dirty, stinkin’ communist!

Here’s some of what my platform calls for:

A moratorium on one-name celebrities. One of the first actions I’ll take to make America less annoying is issue an executive order placing an immediate moratorium on one-name celebrities. Meanwhile, I’ll challenge Congress to pass legislation making the ban permanent. I’ll call it the Anti-Pretentiousness Act. And there won’t even be a grandfather clause exempting existing one- name celebrities, like Cher and Rihanna. They will have 90 days to choose and use a last name or their real last name or else the government will assign them a last name. And it probably will be a last name they don’t like, like Cher Smith or Rihanna Trump. However, I realize that even as the leader of the free world I won’t be able to do anything about annoying one-name celebrities who aren’t Americans, like Sting. The alarming proliferation of one-name celebrities is a global scourge and combating it will require global mobilization. We’ll need some kind of international treaty or something. I’ll put my Secretary of State and my UN Ambassador to work on that right away.

A moratorium on songs that rhyme love and above. I’ll call this one the No More Lazy Lyrics Act. Wouldn’t it be refreshing to know that no new song will rhyme love with stars/heaven/skies/Lord/etc above? It’s so annoying. I say it’s high time we stopped coddling these lazy, overpaid lyricists. We don’t allow other professions to so blatantly shirk their responsibilities!

Reclassification of the word extraordinary as an insult. Because that's what it is. And it’s so annoying that everybody thinks it’s a compliment. Wake up, people! What is extra-large? Larger than large, right? So then extraordinary means more ordinary than ordinary. So when someone says I’m extraordinary, they’re saying I’m more mediocre than mediocre. I would find that very insulting, so it’s a good thing nobody ever calls me that.

Establish a minimum original member standard for old bands. Like for instance, the Kingston Trio is still traveling around and performing even though all three original members are dead. That’s not the Kingston Trio, dammit! That’s a cover band! This kind of thing happens far too often with these bands from the 60s and 70s doing nostalgia tours. It’s annoying. So I’d require them all to have at least 60 percent original members or they’d have to use another name. Otherwise what’s to stop me and my two dogs from getting together with Ringo and calling ourselves the Beatles? If you got duped into buying tickets for that, wouldn’t you be annoyed?

If I decide to run, I hope you’ll support me. Together we can work to ensure that the America we leave for our grandchildren is a lot less annoying. This will be our legacy.

Blame it on Mama

Someone once told me my middle initial should be L for litigious. They meant it as a compliment and I took it as such.

I appreciate the accolades, but I really don’t deserve them. I’m not nearly as litigious as I could/should be. Hell, if I filed an access complaint every time I took a notion to, I’d spend more time in courtrooms than the judges. In my neighborhood, a lot of the buildings were built in the late 19th and early 20th Century, before the great cripple migration. So every day I pass buildings with a step or three on the front that I can’t get into.

I’ve been involved in a few lawsuits. I helped sue Chicago public transportation agencies in the 1980s for not having accessible buses and trains. In the 1990s I sued an apartment building management company for refusing to rent to me. But I prefer airing my grievances through street protest. The courts are too fucking fickle for me. You can file a lawsuit and hire the most brilliant lawyer and make the most eloquent case but still lose if you get some asshole republican judge. But with street protests, I just feel like if you stay up in the assholes’ faces long enough, eventually they do something.

But whatever. If I'm quick to get agitated and go around suing or protesting, it’s because of the way my mother treated me as a child. Here’s a graphic example: (Trigger warning. If you are upset by instances of extraordinary maternal nurturing and character building, stop reading now.) My mother bought a small sled and one day after it snowed a bunch she broke it out. But since my sister and I were crippled and had shitty sitting balance, she knew we’d fall off of a moving sled and crack our skulls. So she built a seat on the sled out of a wooden fruit crate and put straps on it so she could strap us in securely and pull us down the sidewalk on the sled yelling, “Wheeee!”

Here’s another example: When we were criplets, a big yellow school bus picked us up and the driver carried us up the stairs on and off the bus. But when we got too big to be lugged like that, a small yellow van, like the size of a florist delivery van, was dispatched to take us to school. The driver deployed a ramp from the side door and pushed us in our wheelchairs up the ramp and into the van. Mom was so impressed that she soon purchased a van like that and had the same ramp installed. I knew some crippled kids whose families didn’t even build ramps on their houses.

So when my mother treated me like that, it put crazy ideas in my head. It made me think that I deserved to go places and do things. So to this day, when something gets in the way of me going places and doing things, I get grouchy. I have a hard time letting it go.

My mother did that to me. It’s all on her.




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