You are entering the Independence Zone!

Hello readers,

If you stop and think about it, our everyday lives are made up of little tasks we do each day. We get up, we groom and dress ourselves, we clean house. We go to work, take our kids to school, and have some leisure time. Many of us work out in order to stay fit and healthy.

Workouts are a big part of my everyday, though not quite as big as they were about 10 years ago. Back then I was in my “nearly anorexic” phase. Now, I try to mix stationary biking, Zumba, and jogging with days off and a healthy relationship with chocolate (I have a sweet tooth). I also sometimes like to watch people compete athletically.

It occurs to me that, even though I want to be healthy, athleticism has never been part of my daily life. It’s never been something I enjoyed or pursued with passion. Some of that is non-disability related; I’m pretty sure I was created to be an artsy bookworm rather than an athlete. But sometimes I can’t help looking at kids, teens, and adults with athletic gifts and wondering if I missed out. I’m not referring to jealousy. I’m referring to the part of me that says, “I wish I could do that. Would I be brave or strong enough to do it? Could I, with modifications?”

There was a time I thought I could do anything, because I didn’t think cerebral palsy mattered. I thought it was just something I went to therapy for once a month, and the reason I had to wear leg braces. I don’t know if I thought CP would go away, but I saw no reason I couldn’t do everything exactly the way other kids did. It wasn’t on the radar.

Back then–when I was in late elementary/middle school and my little brother was in early elementary–we watched a lot of Nickelodeon when we could get Dad to turn off the news. Two popular game shows we liked were Legends of the Hidden Temple and Guts. I especially enjoyed the latter, particularly rooting for the female athletes, of which there never seemed to be enough. And even though I would’ve been afraid of the heights and water of some events, I still wondered in the back of my mind if I could do it. I wanted people to know I had guts. I wanted to wear a blue, red, or purple uniform and have a cool nickname. I wanted to win a gold, silver, or bronze medal just like in the Olympics (the show was basically the Olympics for kids, after all).

But I never told anybody that, and they never would’ve figured it out. Athletics wasn’t enjoyable for me. The only exposure I got was in P.E., where I was either constantly corrected or separated from other kids to do inappropriately modified activities. Special Olympics was not an option at the time and even if it was, I’d have been made fun of for competing against kids with cognitive disabilities. In fact, I probably would have been judged “not disabled enough” (and how weird is that)? By the time I was in late middle school, I was afraid of anything having to do with sports, shy, overweight, and lacking in confidence.

Of course, I got through that. I found exercises that worked for me, and discovered I enjoyed competing against myself much more than I did competing on a team. I know I have the spirit of an athlete even if I can’t jump off a 7-foot bridge and hit a target, or collect buoys on my arms while swimming through simulated waves. While I’m always working to make my body better, and to balance body, mind, and soul, I’m okay with not being a superstar athlete.

I wonder though, how many kids with disabilities are out there right now who have felt like me? How many enjoy Special Olympics but want to compete with kids of all abilities? How many want to move beyond sports and games “just for” people with disabilities, and test what they can do? How many once thought they could do things, only to hear, “No; your legs aren’t strong enough and never will be. You can’t swim well enough; you’d drown and die.” (My mom actually once used the phrase “drown and die.”) “You can’t judge distance well enough, or move fast enough, for that obstacle course.”

I’m not suggesting we let people pretend disabilities don’t exist, for the sake of athleticism. I personally am glad somebody told me it would be dangerous to attempt the obstacles I saw on television, as well as some of the stuff played in gym class (for example, because of my lack of depth perception, you will never see me playing dodgeball). What I am suggesting is, let’s take another look at athleticism. Why is it a door closed to so many PWDs? Why are their only options segregated sports (because as much as I respect what Special Olympics is trying to do, they are segregated).

There are people with disabilities who have made great strides in athletics, and they should be celebrated. Too often though, their accomplishments are made less because “Oh, you know, that’s in the *disabled* arena, not the *real* one.” Inspiration porn runs rampant. Many kids with disabilities learn to eschew athletics, so they end up under- or overweight. And then they’re blamed for not being active. Do me a favor, okay? Stop blaming PWDs for not doing something, when you haven’t given them the proper avenues to do it.

I say we need to bring ability back into athletics. We need to slowly, but significantly, move away from segregated sports and encourage people of all abilities to compete together. Modifications can be made. Sometimes it’s hard, but if people think long enough and try enough times, they’ll figure something out. Come on guys, we can put a man on the moon. We’ve perfected penicillin. We figured out we don’t have to run around in loincloths grunting at each other. Surely to heaven we can figure out a person with CP to compete on a TAB sports team, with help. It’s already being done in schools across the country; why not move it into competition? For example, let’s say an ambulatory person with a limp or club foot wants to figure skate. Can he or she rely on moves that would not hurt that foot? Could a blind swimmer swim competitively, if given modifications to help him or her “see?”

We also need to start telling people with disabilities that they can be strong, be healthy, and be winners. Too often, even benevolently, the message PWDs hear is, “It’s okay for you to lose. It’s enough that you tried.” I cannot tell you how many times I heard “trying is enough” as a kid, and how much I came to hate the word “try.” It was a weaponized word, used either to try to force me to do something I couldn’t, or to reassure me it was okay to fail because I was disabled. I didn’t want to try–I wanted to win. Other PWDs, I bet, feel the same way. Stop telling us to try. Stop patting us on the head and saying trying is enough. Tell us we can WIN! That way, even if we don’t, we’ll know we’re capable of it. And no, PWDs don’t have to win just because they have disabilities. That’s called cheating. But they deserve a fair shot at it, and they deserve for their shots to come from real contests, not segregated ones made laughably easy (yes, I have seen this happen). People with disabilities can be held to high athletic standards if coaches, teachers, parents, and loved ones let it happen.

Finally, athletes with disabilities should be allowed to experience athleticism the way their peers without disabilities do. Example: a couple of years ago, one school decided it was going to have a “special needs basketball team” (not going into the logistics of that; you’ve heard it enough). The athletes on this team were good. They knew the rules, how to legitimately play, and how to win–and they did win games. But their players were not allowed to have letter jackets–because they had disabilities. Other such examples exist, such as players with disabilities only getting participation trophies, or PWDs being allowed to play in one game, for five minutes, when the home team is already kicking butt, just so they can be “inspiring.”

Foul! Flag on the play! Go to the penalty box! Come on, folks. I understand athletics can be dangerous and fast-paced, and that you might be protective of athletes with disabilities. But if those athletes are going to be part of a team, for good golly sakes, let them be part of the team! They are there to learn the game, learn teamwork, and enjoy camaraderie, not fill your water bottles and your inspiration tank. (By the way, that goes for “letting” an athlete with a disability be scorekeeper or referee, too. If they didn’t volunteer, don’t just stick them in that position).

Too long, the door to athletics has been closed to PWDs. Let’s open it, wide! Let’s ask PWDs what they’d like to play, whether they’d prefer team or solo sports, and what we can do to make it happen. Let’s give them chances to compete for real accolades. Let’s let them be part of our teams, with the cool uniforms and the cool nicknames and the inside jokes. It’ll take guts, but I think we’ve all got those.

 

Hello readers,

Some people are so weird, and scary. They’re the kind of people that make me want to retreat to my room and spend the rest of my life working from home, watching Once Upon a Time, and scouting Amazon for 99 cent Kindle deals.

You might think I’m talking about ax murderers, serial rapists, and those people behind the “clown killings” of 2016. And yeah, in a way I am, but I have encountered much more innocuous-looking, yet scarier people. People like therapists and doctors who believed my life would finally be fulfilling if my walking were 10% better. People like teachers and administrators who equated being smart and expressing it with needing “behavioral remediation.” And recently, I encountered another type of scary person.

Last Tuesday’s episode of Dr. Phil featured a woman whose fiancé claimed she needed “wife lessons” before she could marry him. The man constantly said things like, “I need to teach you…you don’t know what it means for the house to be clean. It is not that hard to do things my way. You are lazy.”

Now, this woman did not have a disability, but the relationship between her and her fiancé scared me a bit, because I could definitely see a man being nice to me at first and then saying things like, “You are lazy. I do not want to be your caregiver. You need to be taught how to do things you ‘claim’ you can’t.”

And then I realized, why am I so scared of a man, a potential relationship partner, doing that based on disability, when it’s already been done to me by other people? More to the point, why is much of society unaware that we treat PWDs like perpetual students? Yes, we all learn something new every day. Nobody is past the point where they can learn. But there is a huge difference between learning because it’s what you’re expected to do, or learning for pleasure, and having someone treat you like a perpetual grade-schooler. I have seen this happen a lot. Middle- and high-schoolers with disabilities, who have strong social circles, are still told they need to work on social skills or learn to behave. Adults with disabilities are told they need to “learn how to work” before they can get a job. Or if they already have jobs, they are told they need to learn to do them one certain way; all other ways are wrong. I had this happen this week. After apparently asking for help one too many times, I received an email in which I was chastised for not working independently.

I say this whole construct is a bunch of baloney. Once again, the solution goes back to the Golden Rule. Think about how you, as a TAB person, would want to be treated. After working all day to clean your house, or putting effort into socializing when it’s hard, would you want to be told, “You didn’t do that correctly, nor can you. Is it so hard to do this the right way?” No, you would not. So why do we do it to people with disabilities, in the name of helping them learn? That’s not learning; that’s shoving your expectations and standards down another person’s throat.

The solution to this problem also involves common sense. Let’s go back to the email I received about working independently. After emailing back to express how I felt about that little dig, I’m still trying to figure out what it meant. No one person is fully independent. I don’t care if you can raise five kids, skydive, make a cheese soufflé, and cure the common cold in the same week. At some point you will still need help with something, and most work environments understand that. We treat PWDs as if having a job is some impossible goal, one that if they reach, they are supposed to handle completely by themselves. Otherwise, they are failures. We chastise PWDs for not having relationships and social lives, but out of the other sides of our mouths we say, “You can’t because you need to learn how.” Yet, the TAB population gets to ask for help. They get to be interdependent, to make mistakes, and to manage themselves, because they are able-bodied. They are somehow better and more skilled.

Say what?

And don’t even get me started on the fact that we tell PWDs they need to learn things, but never let them stop learning one thing and move on to the next. In the TAB world, you are expected to progress. You pass Spanish I, you move on to Spanish II. You learn how to make cupcakes from a mix, you are trusted to try a more complicated recipe. You master your letters in kindergarten, you move on to first grade, where you are taught how those letters produce words, words produce sentences, and sentences produce books. Yet PWDs are constantly stuck in a holding pattern based on the judgments of other people, who often do not see or care about their desires, efforts, or successes.

A lot of people, like that so-called fiancé from Dr. Phil, say they perpetually try to “teach” out of love. And yes, most people helping PWDs have good intentions. Yes, PWDs need to learn things like everybody else. The problem is, PWDs often feel like perpetual students–i.e., children–because that’s what they’ve been taught they are. Many PWDs in school don’t know what grades they are in, because they have been “educated” in self-contained environments where grades, age, and progress are not relevant. Adult PWDs are still being told they need to “learn to be adults,” when according to their ages, they have been adults for years. Maybe the problem is not learning, teaching, or a lack thereof. Maybe the problem is that we’re scared to see PWDs as adults, because once we do, we have to treat them as such. Treating someone as an adult often involves a level of trust we’re not all prepared to give, because we want control. Let me speak from experience: PWDs are some of the most controlled individuals in the world, and because of that, they often lead artificial lives. Yet the people claiming to help them or teach them are never satisfied; they pile on more goals, more standards, more control.

It’s good to learn and to be a student of the world around you, but eventually you have to get out of the classroom and apply what you know. I’d like to see PWDs given more chances to do that. When they get those chances, I’d like to hear less, “Well, uh, yeah, you did it, but not the right way. Let me teach you more.” I’d like to hear, “Nice work! You did great. You’re really talented at this; have you ever considered teaching others to do it?”

Hello readers, and may I say it is wonderful to be back after what might be the toughest work weeks in recorded history. Thanks to a new, top-tier client, I have been absolutely buried in statistical data and blog posts, but now I’m finally back to tackle a topic I’ve been waiting to write about.

During Martin Luther King Jr. Day weekend, I had the privilege of watching a documentary called Light Girls. If you’ve never seen it, I highly suggest getting access to it on a streaming network, television, or the Internet. Light Girls is about the history of light-skinned black people in our country, particularly females, as well as the “colorism” rampant in many communities. In some cases, lighter skin is privileged because it means you are “more” white and “less” black, or Indian, or Caribbean, or whatever your origin happens to be. But in others, light girls and guys get harassed because they are “not black enough” or “not dark enough”; dark skin is privileged. The documentary also talks about the unique experiences of mixed race people, who are often made to feel they don’t fit anywhere. I have a writer friend, G, who is mixed-race, and she has testified to that in beautiful and heartrending ways.

In no way am I trying to appropriate racial experiences. I couldn’t even if I wanted to; I’m not just white, I’m porcelain. Comes from that fair Irish ancestry, I guess. But as I was watching Light Girls, some of what interviewees said resonated with me as a woman with a disability. For example, a featured professor from the New Orleans area talked about encountering passe-blancs in her lifetime, or blacks who were passing as white. As I absorbed her words, it hit me: how many times in my life have I tried to “pass” for TAB, or look as non-disabled as possible? How many times have I been angry or sad or felt rejected when that didn’t happen?

I can remember quite a few times, like the time I told Mom I wanted to go to sleepaway camp like other kids, but not tell the counselors I had CP. I’d gotten the idea from a book in which a 1940s teen who is blind keeps it a secret at camp. I figured, at least I could see, and if she could do it, so could I.

And how about the time I tried out for a youth theater production, knowing I did well in the audition because it was focused on line delivery and expression–only to find out I didn’t get a callback? The director actually pulled me aside to say, “You can’t move well enough; you’ll mess up the set.” I was the only one of all the actors trying out who did not receive a role.

Or how about all the times I’ve walked into college classes, thinking finally my CP won’t mess me up–only to have the professor request that we write down our basic information on index cards during the first meeting? Or to find out that whoopsie, this class requires going outside to hunt for salamanders, or interpreting statistical information from graphs and Venn diagrams? Ugh!

Believe me when I tell you, there is a big part of me that says, “Screw all that. If the world cannot accept disability, that’s their problem, not yours.” And it is, because our society’s view of disability is for the most part negative. Still, there is a threshold of how much disability society will tolerate, just as there was a threshold of how much melanin would be tolerated in skin. Light Girls interviewees described this in sobering detail. Black people often underwent a “paper bag test” to get into certain organizations or buildings. Anyone with skin darker than the shade of a brown paper bag could not enter certain places, including church. Other organizations forced people to pass combs through their hair to prove it was smooth and straight. (I mean, what the heck? Who DOES that kind of thing to a fellow human being? Well, obviously someone who only sees their people group as human, I guess).

Now of course, we don’t have signs on our doors that say, NO ADAPTIVE EQUIPMENT ALLOWED or AMBULATORY PERSONS ONLY (although sometimes we might as well). But think about it. Let’s say you go out to your favorite coffee shop, and you encounter two people in wheelchairs. The first is sitting upright, having an adult conversation with his or her companions, drinking and eating neatly. The second is not sitting up straight, may need to be fed, and is speaking loudly and unintelligibly, or not on a typical level, if at all.

Which one looks “more disabled?” Which one is getting more stares and negative feedback? Which one would the TAB population rather be with? Ten to one, the second person is the one less tolerated. True, it’s often not obvious. It’s not the same as marching up to a black person and saying, “I don’t allow Ns in here.” But it’s just as damaging, and it’s crap.

Kathie Snow talks about this–often more intelligently than I could–using the term “disability hierarchy.” As with skin color, disability hierarchy happens when less severe disabilities are privileged over more severe or noticeable ones. Both the TAB and disability communities do it, and it often starts unconsciously in childhood. Let’s say for instance, Kayla is TAB and her little brother Logan is autistic. When people make fun of him or speak gloom and doom over him, her response is, “Where do they get off? It’s not like he’s retarded!” Not only is Kayla using the R word, but she’s also saying mental disability is somehow “worse” than her brother’s form of autism. But because she’s a kid, she may not know better. She just picked it up from the environment.

Or what about privileging ambulatory people over those in wheelchairs, even if they have the same disability? I’ve heard this before. People have told me, “It could be worse. At least you’re not in a wheelchair.” I absorbed that. Sometimes that message made me feel guilty, like when I had to ask for a wheelchair on a guided tour or tough terrain. A little voice in my head would say, “You don’t really need this and you’re effectively stealing from people who do. Everyone feels sorry for you.” And while those messages may not be true, it is true that people in wheelchairs are more likely to be defined by disability than those of us who can walk.

I say it’s time to stop this whole thing, to tear down the hierarchy. People are people, and disability should be irrelevant. No, I don’t mean irrelevant in terms of safety, but in terms of human relations. Stop effectively saying a person with clear speech is better than one with an impediment, that a person with Asperger’s is better than a person with Down Syndrome. Heck, we even do this in therapy! We say, “Okay, James, when you can walk to this line, you will be more independent and one step closer to getting rid of the wheelchair.” What we often mean is, “James, walk to this line to prove to me you are one step closer to my definition of normal.”

What the French?

Stop it, people. Stop drawing lines in the sand and expecting PWDs to cross them before they fit into your world. I mean it – put the pencils away. We say disability is not a civil rights movement, that we don’t mistreat people with disabilities. But at the same time, we constantly shame or exclude PWDs for something they didn’t ask for and can’t help–just like we used to do with skin color. Yes, the civil rights movement is here. Listen up. We’re tired of trying to “pass for normal” to please you, so I suggest you take your normalcy goals, preconceived notions, and other equivalents of the paper bag, and go home. Otherwise, we may all lose our marbles.

Hello and a belated Happy New Year, readers. My, has it been a long time! I meant to get back to the blog after Christmas, but a bronchial infection kept me sick for over a week. One round of antibiotics and countless doses of Mucinex later, I’m finally up to it again.

I struggled with whether to start a new year with this post, because it’s highly personal and something I’m still wrestling with. I’m also aware some of my readers may not believe in God, or at least not in my version of Him. However, I do believe God, or the universe, or whatever your higher power is, has a plan for everyone. I also believe PWDs struggle more than most to find out what that plan is and how they fit into it. So today, we are going to talk about that.

As you might know, many religions teach that a chosen deity has a plan for us. The plan often culminates in the afterlife–Heaven or hell, Nirvana or reincarnation, soul sleep, something. But in the meantime, most religions teach the plan is not cookie cutter. Everyone has a specific purpose, a reason for being, and work they are designed to do. Except, maybe, PWDs?

The Christian church is, I think, especially guilty of this line of thinking. (Notice I didn’t say Christianity itself; I’m slowly coming to understand Jesus is not guilty. Then again, He’s not guilty of anything, so there you go). As we’ve talked about before, the Christian church often buys into this idea that the purpose of a person with a disability is to be disabled. To inspire people. To function as a crippled or even sacrificial lamb (which personally, I don’t get. Christianity teaches that Jesus was the ultimate Lamb, so how come we need more)?

Here’s the thing, though. Inspiration can be a good thing, and you don’t have to be a PWD to give it. So whenever a friend or family member says, “You amaze/inspire me,” I get a little confused. I’ve seen people inspired by what I do, whether it’s writing, getting a Master’s degree, or acting in a play. Those people compliment me not because I have a disability–I hope–but because they are legitimately inspired. But a part of me always wonders, are they privately tacking on “despite her disability?” If I inspire people in any way, does it still count as disability-centric? It doesn’t, but as a PWD who has been called inspiring so many times, that can be hard to remember.

I’ve also really wrestled with the idea of some PWDs being here, allegedly, not to do things but to be themselves. I’m talking about PWDs who literally can do nothing but sit and be waited on. Who need help with basic things. I struggle with that because I still need help with some basic things, too. After all, driving is considered a basic for adults, and I can’t do that. If I want to curl my hair, someone else has to do it because I can’t safely manipulate an iron. Shoot, I can’t even fold laundry. Knowing those things, I wonder if God’s major kingdom accomplishment is for me to bless others by allowing them to help me. I don’t have a problem with that, but when I want to do for myself, to serve others…ugh, it’s so difficult!

And so I really, really wrestle with that. I’m telling you, I could probably give Jacob a run for his money. It often turns into this type of conversation in my “prayer closet”:

God says: You can inspire others with what you do, no matter what it is.

I say: Yeah, inspire others by riding a stationary bike at the gym. Big whoop.

God says: It is to Me, daughter. It is to people who can’t do it.

I say: Yeah, I get that. You’re right, as usual. I guess if somebody can’t work, or get dressed, or whatever, I could inspire them. After all, you’d probably like them to do that stuff if they can, right? I’m just confused. See, a lot of other Christians act like I should be content to do just that. The Bible even says so…

God says: Careful. Don’t let your own thoughts twist Scripture. I know what you’re talking about–the verse in Philippians 4 that says to be content. I do want that for you, but that doesn’t mean all I want is for you to “be disabled.”

I say: Then why am I not doing more? If it were up to me I’d probably be ministering to orphans in Romania right now, or running a ministry, or…something.

God says: That’s why it’s not up to you. That’s not your calling. I’ve got people taking care of those orphans. I need you here right now. You shouldn’t do for the sake of doing.

I say: Yes, I know. I should just be. But oh, God, it’s so hard. My body feels so useless, so my brain always feels like it has to be doing something. Sometimes I feel so hopeless, like a lamb you wanted to be crippled.

God says: I didn’t. I know it’s hard. You’re not the only one.

I say: I feel so alone in this.

God says: You aren’t. Tell others they’re not; they might feel that way, too. Come up on Abba’s lap. Let me hold you.

I say: I can’t figure it all out. I try to be content, but I want to reach for more. I know you say that’s okay, but you want me to just be…and I want to do what you say while finding my calling, and you won’t tell me what it is, and…why doesn’t everything fit?

God says: Shhh. Not now. I’ll figure it out for you. Just be.

 

And I wonder now, how many PWDs are feeling the same way? Do you feel you need to compensate for what your body can’t do with your brain, or vice versa? Do you see other people living out their callings, and feel like your deity skipped you? Do you feel you can’t “just be” because the world says that for PWDs, that’s not good enough? Because it does, you know. They say we have to produce, to do, to go, to make up for being what author Mary Johnson calls “failed normals.”

One, that’s a bunch of baloney. Two, I get that it’s hard to convince ourselves of that. Three, I don’t know what everybody’s calling is or what the universe will look like with us in it. But I do know a few things:

-Even if you can do nothing but sit, you are not a crippled lamb. You were not made exclusively for pity, or to make others feel good about themselves. Those who treat you as such are using you, and they need to be called on it. You are here because you’re you. You are here to show that disability is natural and has good traits. You are here to do something for someone, even if it’s very simple. There will never be another Justin, Tonya, Greta, or Reuben. People should love you even if they don’t understand the “package” you came in.

-No two PWDs have the same callings. As God has shown me, “If I wanted you to be like other people with disabilities I’d have made you like them.” So don’t worry that Zach, who has no arms, went skydiving when you have two perfectly good arms but can’t handle heights because of depth perception. That’s nobody’s business but your own.

-If you want to do and be more, you can reach for that. It does not mean you are ungrateful or discontent. You are not a bad person; you are not betraying your deity or holy book; you are not going to hell. In fact, many PWDs don’t reach for more or better when they should, because the people around them teach them to be helpless. Personally, I think it’s time that stopped. I can’t read God’s mind of course, but I’ve got a hunch He doesn’t like it any more than I do.

-Churches, temples, and synagogues all over the world need to start telling PWDs they have callings, because they do. It might not be glamorous. It might not be a calling everybody gets to see, like a missionary or a worship team leader. But it’s there. And please, ministry leaders, stop relegating PWDs to the simplest tasks, or the tasks no one else wants, because of how you see them. See with your spirit, not your eyes.

-You may wrestle with this and other spiritual questions for a long time; I know I have. That’s okay. Wrestle when you need to and rest when you feel the need, or are led to do so. In my experience, sometimes God lets us play mental chess and sometimes He says, “Not now. Now is the time to trust me.” If you don’t trust a god, trust yourself. Neil Gaiman says, “Trust your story.” Of course, he means the literary type of story, but I’m using the quote to mean, “Trust the story that is you and your place in the world. You are you, and you have nothing to be ashamed of.”

What is God’s plan for PWDs? I don’t know, because everyone has a different one. But I know He intended us to be here, so why not do what we can–including inspiring others–while we are here? Maybe we can inspire TAB people to start being inspirations. After all,  why should we have all the fun?

Hi readers,

December is barely here, but Christmas preparations are in full swing. One of the first ways you know this of course, is when Christmas music blasts from radios, iPods, and musical instruments everywhere.

Now, I love Christmas music. I play it in August if the mood strikes. In fact, just to let you guys in on a bit of my personal life, here are my top ten favorites:

  1. God Rest Ye Merry Gentlemen (I can’t hear it without thinking about A Christmas Carol)
  2. Carol of the Bells (yeah, some people think it’s creepy but I’m outside the mainstream, in case you didn’t already know that)
  3. Breath of Heaven (Mary’s Song) (not as well known outside Christian circles but needs more press)
  4. Masters in this Hall (Madrigal; we sang it every year as the opening to my high school chorus’ Madrigal Dinner performances)
  5. The Holly and the Ivy (I want to adopt twin girl kittens and name them after the plants)
  6. O Come, O Come Emmanuel (English or Latin)
  7. Silent Night (English or German, because, of course)
  8. Greensleeves/What Child is This (either lyric set)
  9. ‘Twas in the Moon of Wintertime (less well-known carol; written by a 1700s priest to explain the birth of Christ to the Huron tribe)
  10. Sussex Carol (also less well-known, but you might be familiar with the Wexford Carol from the same region)

However, there are some Christmas songs I can’t stand. You might know a few of these–Grandma Got Run Over by a Reindeer, Here Comes Santy Claus (nothing against the jolly old man, but it is Santa; get it right, people), and Blue Christmas (not an Elvis fan, plus it’s depressing). And even as a Christian, I have a really hard time with the Newsong hit The Christmas Shoes.

You’ve probably heard it, or seen the movie based on it (yes, they made a movie out of this thing). It’s essentially about a little boy from a poor family, trying to buy his mama a pair of beautiful Christmas shoes because she’s dying and he wants her to “look beautiful if she meets Jesus tonight.” Except tonight happens to be Christmas Eve, the kid doesn’t have enough money for the shoes, and so a stranger helps him out and learns what Christmas is about.

On the face of it, there is absolutely nothing wrong with this song. I’d be the first to hand money to a little kid like the one in the song, pray for his dying mother, and probably bring Christmas treats and a tree to the hospital. The song itself makes me cry. I know it was intentioned as a modern Christmas classic.

But here’s the thing. When I get teary over The Christmas Shoes, I know I’m being manipulated. I know that once again, people with illnesses and their families are being used to yank heartstrings. I mean, think about it. How many holiday movies, TV specials, songs and the like have you seen or heard that feature a tiny cancer patient, a little “crippled” child or creature (media’s word, not mine), or some variant? Bonus points if the kid/creature is also an orphan, if the family is low-income, etc.

Of course, that kind of manipulation makes me think about people with disabilities. Remember how in the last post I said you might live with a disability if your “inspiration porn radar” is set to “high” December 1-25? Yeah, that’s because the media loves to cash in on inspiration–and on you–this time of year.

This is one of those things I don’t bring up because when I do, people assume I’m being an Ebinita Scrooge. They assume I am coldhearted toward real PWDs, people with serious illnesses, or poor people (who, 90% of the time in these Christmas movies, also happen to be ill or have disabilities). Nothing could be further from the truth. But I’m sick of people using PWDs as feel-good tools, especially at Christmas. Apparently it’s not enough to paint them as saintly the rest of the year; at Christmas we have to take the whole thing up to eleven.

At one time, I suppose this kind of entertainment had its place, because people without disabilities didn’t know any better. And I’m not saying such entertainment can’t evoke emotion or have artistic value. What I am saying is, the message of that entertainment robs persons with illnesses and disabilities of the chance to be people, yet again. Yet again, it robs them of the chance to be strong. To accomplish things. To have character traits outside of what is “wrong.” To teach people around them lessons through life instead of death.

Do this with me, all right? Imagine what Christmas entertainment might be like if we treated PWDs and people with illnesses like cancer the same as any other character. Maybe:

-A woman with a disability, who works in a large corporation, gets the idea to make Christmas come alive for jaded people through a new campaign, and catches a hunk’s eye in the process.

-A blind man with a wife and children (because yes, that can happen) is determined to find his kids the perfect toys for Christmas. Yet because of comedic mix-ups, some of which are due to blindness and some of which are not, he buys a bunch of random stuff and has to make it work; his kids learn the age-old lesson that Christmas is about more than presents, but with a new spin.

-A child cancer patient decides to throw a big party for all the kids at the hospital. Even though he or she hasn’t believed in Santa for awhile, it wouldn’t be a Christmas party without St. Nick himself. But the kid’s letter gets lost in the mail, marked “return to sender,” or some such. So what does the kid do? Sneak out of the hospital, hot on the trail of the perfect St. Nick. Sickness does get in the way, but so do other obstacles, like say holiday traffic, the risk of being caught by a grumpy nurse/doctor, etc.

-An adolescent/teen discovers a gift in his or her stocking: the cure for a sibling’s disability or illness. But it can only be used on Christmas Day; if not enacted by midnight, the gift becomes null and void. Mom, Dad, Gram and Gramps, and the aunts and uncles are thrilled. But big brother or sister isn’t so sure the cure is the right thing. He or she spends time trying to figure out, is this what my sibling wants? Could God, angels, Santa (whatever your belief system allows) use it, or would they prefer we take some other route? Where did this gift come from, and did the giver have dishonorable intentions? What, really, is the ultimate right thing?

-An adult with a serious or terminal illness decides to have one last huge blowout Christmas. His or her goal is to tie up all the loose ends and die in peace. He or she is ready–until something unexpected happens. Love arrives, in the form of a PWD, another ill person, a hot medical professional, or a person who is TAB but loves the ill person as is. The ill person is told staying alive is key to saving civilization from some kind of holiday apocalypse. A baby is dropped on the person’s doorstep. You name it.

-A PWD is watching old home movies with his or her family, and remembering how easy it was to be a kid, before he or she realized how life-impacting disability could be. He or she prays or wishes for a second chance at life, maybe even writes a letter to Santa. The letter/wish/prayer  is answered, catapulting the person back to childhood and giving him or her the chance to live life over, making critical decisions that will change the way the person lives now. The catch is, time is sped up and these critical changes must be made by December 25 (end of holiday season, starting December 1). What decisions will this person make? What will he or she sacrifice in the original timeline? Is there a way to “fix” what might go wrong? (This one is straight out of my personal experience–the home movie thing, not the time travel thing).

See what I mean? Any one of these plots, or any y’all could come up with, is probably legions better than the sappy stuff characters with illnesses and disabilities are subjected to this season. So I have a message for the media: yes, I know what you’re trying to do. In the interest of staying on the Nice List, so to speak, I’m trying to understand it. But how about taking a walk in our shoes this season–because the only Christmas shoes we need are the ones that let us live life?

That’s right. It’s been a while since the last bonus round, so today you get one.

You might remember that way, way back when this blog was new, I did a post called “Disability Humor: What Are We Really Laughing At?” I took a close look at what passes for disability-related humor in today’s world to find out if it was really funny. Some of it is, and some encourages us to laugh at PWDs, not with them. For example, you might remember some horribly offensive nuggets of humor like, “Why Beer is Better than R-Word People” or “You might have a disability if you get excited over a gadget that lets you wipe your own bum/spend all your time in the hospital/are glad Grandma understands when you wet your pants.”

This type of “humor” perpetuates stereotypes of persons with disabilities as ill, stupid, incontinent, and unpleasant to be around. Just rewriting and revisiting it makes me cringe. However, we could all use humor in our lives, and sometimes living with a disability is funny. Sometimes that’s because the temporarily able-bodied world doesn’t “get it,” or because, as happens for everyone else, things don’t go the way we plan.

So I thought today, I would share with you a list called You Might Live with a Disability If. I have tried to represent several different disabilities and speak to relatable experiences. Some tidbits come from my own experience as well. Here we go:

You Might Live with a Disability If:

  1. You can rattle off the full names for IHP, IEP, and IFSP, and know the differences between them.
  2. You know the difference between an IEP and a 504 Plan, and which one you need/want.
  3. You regularly fight with elderly, yet able-bodied people over parking spaces.
  4. You are tired of explaining to people why they cannot pet your guide dog/service animal.
  5. If you use a laser-guided head mouse or other tech, you have fantasized about setting the laser to “stun.”
  6. Your wheelchair, braces, walker, or cane could be considered weapons of mass destruction.
  7. You regularly pray against the temptation to roll over someone with your wheelchair.
  8. If Deaf, you have ever turned your back or taken out your aid/implant just so that obnoxious person will shut up.
  9. You love cursing at non sign-language speakers, esp. when they think you’re being complimentary.
  10. When you say to a TAB person, “I can’t use a pencil,” you have been asked if you’d like a pen.
  11. You have popped a wheelie while going up or down a curb.
  12. You can spot inspiration porn 5 miles away (your radar is set to “high” from December 1-25).
  13. You love the look people give you when you say you don’t want a cure.
  14. If you hear, “You are such an inspiration” one more time, you are going to scream/potentially maim somebody.
  15. Somebody says, “But you don’t look disabled” and you say, “You’ll blow my cover!”
  16. You know more about universal design than the average architect.
  17. You have used Tourette’s tics for the express purpose of scaring obnoxious people who make fun of/ignore you.
  18. When someone speaks to you verrry slooowlly and LOUDLY or calls you “honey” or “sweetie,” you love to shock them with your knowledge of quantum physics/British Lit/Euclidean geometry.
  19. You tell your VR representative you want to be a professor; he chokes on his coffee.
  20. You say things like, “It’s an autism thing” or “I only look neurotypical.”
  21. You have watched, or participated in, disability simulations and laughed at what the poor TAB suckers got wrong.
  22. You would like to personally punch Dustin Hoffman in the face.
  23. That goes for Clint Eastwood, too.
  24. You own T-shirts with sayings like, “Keep staring, I might do a trick” or “If I throw a stick, will you leave?”
  25. You know those TAB people are underestimating you. It’s okay. They don’t yet know your plans for world domination. (Cue Pinky and the Brain theme music).

I’m open to suggestions for others, so feel free to post them in the comments.

Hello readers,

I hope everyone had a marvelous Thanksgiving. If you are sufficiently awake from your turkey and pie comas, I have a new post for you.

I got the idea for this post while watching a Hallmark Christmas movie (yes, I’m a sucker for them). This one’s called A Christmas Melody and features a single mom and her nine-year-old daughter Emily. They’ve just moved from Los Angeles to Silver Falls, Ohio, in time for Silver Falls Elementary School’s annual Snowflake Pageant (kind of a Christmas-themed talent show). Emily loves to sing, so Mom asks if she can audition even though the family had not moved until after tryouts. The head of the PTA, a grown-up “mean girl,” is unsympathetic. “If I make an exception for your child, I have to make an exception for every child,” she says with a self-satisfied little grin.

As with so many of these situations, I understand her logic. There are situations in which it holds up. For example, if a child in Emily’s school who had known about the auditions but chose not to try out at the appointed time suddenly wanted to do so, yes. I could see saying “no exceptions.” If Little League is only for kids ages 6-12, it would be unfair to make an exception for a 13-year-old who was twice the size of the other kids and whose birth certificate clearly stated he was 13. If a school chooses to go peanut free because a high percentage of the kids have allergies, I could see saying, “All snacks/desserts absolutely must be peanut free.”

However, I question this idea we have that exceptions are always a bad thing, or always mean the person requesting them is an entitled little snot. For example, Emily didn’t know about the pageant, and it’s not like Mom could’ve called the school and made arrangements ahead of time–would it kill the PTA to let her try out, even if she didn’t get a part? If a child’s family does not celebrate Christmas, is it such an “exception” to acknowledge his or her holiday?

This is a particular conundrum for people with disabilities and their loved ones. It often starts in childhood. Let’s say Max is in the second grade, the year when handwriting starts becoming a major focus. Max has cerebral palsy, or another disability which makes his handwriting illegible and makes writing painful for him. However, he can type on the computer. Yet his teacher insists to Max’s parents that,

“Every child in my class must complete handwriting assignments. If I make an exception for your child, I have to make an exception for every child.” Meanwhile, Max’s classmates are expected to learn to type as well as write, because it’s part of technology. His classmates are rewarded with computer time, but Max is exempt because, “We don’t want him taking the easy way out.”

Another example: Ashlyn is in middle school. She has a sensory processing disorder (SPD) that makes eating certain foods unbearable. Her parents are not able to pack Ashlyn’s lunches, so Ashlyn must eat in the cafeteria. Her school follows a program that says children must eat X number of calories and X types of food each day. Leaving aside how ridiculous I think that is, these programs do exist. Ashlyn has tried to explain her SPD, as have her parents. The response they get is,

“If we make exceptions for your child…” You get it. “Plus, Ashlyn is too old to be a picky eater.” (By the way, I know a little girl with an SPD like this. It is far more than picky eating, just as other SPDs are far more than itchy clothing or other troubles. But SPDs continue to be highly misunderstood).

Last example. This one is partially ripped from the headlines of Disability Scoop. Sabine is a middle school student with Down Syndrome. Per IDEA and laws regarding least restrictive environment, Sabine is entitled to an education in a general ed classroom alongside peers without disabilities. Despite the family’s objections, the school continually pulls her out of general ed classes for several hours a week in a segregated classroom. The rationale given is, “This is how we educate students with needs like Sabine’s. If we make an exception…” Along with phrases like, “This is what is best” or “This is what Sabine’s evaluations indicate she will benefit from.” Never mind what Sabine or anybody else thinks.

This whole “exception” thing really burns me up, for a couple of reasons. One, exceptions are made all the time, for people without disabilities, for a number of reasons. The Jewish child in your kid’s class is allowed to go to recess with other kids instead of watching a Christmas movie, if he or she wants. A black high school student is given an alternate English assignment because he or she legitimately feels a book that uses the N word and other slurs is offensive. An adult invited to a wedding at which no vegetarian dishes are served is allowed to make an exception for him or herself by bringing food from home or speaking to the chefs ahead of time.

Yet, people with disabilities are “entitled” if they ask for exceptions. I’m not talking about reasonable modifications here, although those often get shot down, too. I’m talking more about alternatives that could be presented when reasonable modifications aren’t available. I’m talking about exceptions that can and should be made to ensure people with disabilities are afforded dignity, respect, and a level playing field.

In many cases, these exceptions don’t exist or are not allowed. The TAB world rationalizes, “We can’t make exceptions because it encourages entitlement/is the easy way out/is too hard.” They say people with disabilities cannot do the same things everyone else can–but in the same breath, they expect PWDs to do things one way, or not at all. Let’s return to the example of Max and the computer. His teacher could, and should, allow him to use the computer because it is his one means of legible handwriting and possibly passing that part of the curriculum. Yet he or she decides, “Well, majority rules, so like everyone else, Max should only get computer time when he has earned it.”

It’s yet another of the double standards PWDs confront and fight every day of their lives. Often, as is the case with families like Sabine’s, they lose the fight. Why? Because “the system,” whether that be the school, the college, the court, whatever, persists in thinking “fair” and “equal” means “everybody gets the same thing.” No–I cannot say this enough. Fair and equal only happen when everyone gets what they need to level the playing field. It’s common sense, so why don’t we use it?

Besides that, when the TAB world continually refuses to make exceptions for PWDs, they label them with more negative stereotypes. As in, “People with disabilities are lazy because they’d rather use the dishwasher than wash dishes/eat out than cook/type than write. They are entitled and spoiled because all they do is ask for modifications and exceptions. They will never be like us, so it’s better if we segregate them.”

Wow. It blows my mind that people would rather do that to their fellow human beings, than make slight exceptions that could level the playing field. Think about it. If we made exceptions when we needed to, what might we learn about PWDs?

Perhaps we’d finally see the truth about them–that they are capable, can learn, can function, and can contribute. Perhaps we’d learn these people are exceptional, not because of disabilities but because they are humans with whom we share our world.