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Hi readers,

I hope everyone had a happy and blessed Easter or Passover, and that if you haven’t had spring break yet or are in the midst of it, that’s going well, too. Since we did just have these holidays, this is going to be one of my posts that is a little more God-centered than normal. It centers on the age old question, if God can cure disabilities, why doesn’t He? More to the point, why does He allow disability, and is it for the reasons we think?

God has proven, over and over, that He can cure disabilities, and that disabilities don’t have to exist. Read the New Testament; there are several accounts in each of four Gospels of PWDs who were completely healed. So naturally many people, especially today’s Christians, ask why God doesn’t seem to do that anymore. Christians, Jews, Muslims–people of all faiths–pray that somehow, the people with disabilities among them would be “made whole.” They entreat their gods for intervention–but one specific kind of intervention. The type that cures, that ostensibly heals. And often God, or Allah, or Krishna, or whoever, says “no.”

Why? Of course, we think we know. We as humans have dreamed up several explanations. We say things like,

“God allowed my child to have a disability because my special child needed a special parent.”

“My child’s disability shows the world who God is, because my child is so compassionate/happy/selfless. She never complains. He always has a smile for somebody.”

“My child was sent to bless others/is God’s special angel.”

“Disabilities exist because there is evil and suffering in the world.”

Now, are those statements true? I don’t know. I don’t know the mind of God. What I do know is, those statements reek of ableism, no matter how well-intentioned they are. That last one in particular gets to me, because while it might be theologically accurate, it implies an individual with a disability is a personification of suffering. I mean, who came up with that? What kind of God would create someone and say, “I really don’t want to do this to you, but I have to because the world sucks?” Again, I don’t know, but I don’t think that’s how God works. God is not an ableist. Nor is He limited in power; He doesn’t have to create PWDs. Due to free will, He allows evil and suffering, but that allowance is acquiescent, not permissive. He doesn’t create PWDs just because the world sucks. So there have to be other reasons, right? Right.

I don’t know what those reasons are, and I’m not going to try to explain them. What–or Who–I do know is the person behind those reasons. For me that happens to be God the Father, God the Son (Jesus Christ) and God the Holy Spirit. So bear with me; if you have a different god, that’s fine, and I hope you’ll find some encouragement based on what I’m about to say even if it doesn’t reflect your belief system.

See, humans have gotten this whole earthly living thing mixed up, and I’m as guilty as anyone. We think because we are here, because we are the highest life form and at the top of the food chain, earthly living is about us. It’s about what we do to survive and thrive. As Solomon said, “Eat, drink, and be merry,” for tomorrow, we die. And I guess if you’re an atheist or agnostic, that works for you. Fine; live as you wish. But for those of us who claim a god, particularly the Judeo-Christian God, life is not about us. It’s about God.

That’s right. We’re here because God wanted us here, not because He had to create us. We’re here because He chose for us–every one of us–to be here in certain times and places, and that includes PWDs. Sometimes I really must struggle to remind myself of this, because I feel like a big mistake. As if God was going along fine and then some clumsy angel flipped a switch and whoopsie! I got CP. I even asked my parents one time, “Okay, so the only reason I have CP is because my heartbeat stopped during birth and the doctor had to get me out right that second. I wasn’t created like that. It wasn’t supposed to happen.”

My parents didn’t have an answer for me, and I still don’t have an answer myself. People have told me CP was God’s will, but I don’t know what He was thinking on January 7, 1986. I know He could see all, knew all, and knew I’d have CP. And I know because of that He didn’t say, “Crap, I blew it!” But would CP have happened if my heart kept beating? Would your child have Down Syndrome if you’d had him at 30, not 40? Would your child be blind if you had pushed her from the womb 15 seconds sooner? Who knows? And really–should we care? Maybe not.

Why not? Because if we, and if the universe, is all about God, He gets to say why PWDs are here. And maybe, like everything else, it’s for one big reason: so the universe and its people will know who God is.

Now, I don’t mean that in the hokey way Christians dress it up in (and other faiths too, I’m sure). I don’t care how happy and compassionate a PWD is, he or she cannot function as a 24-7 representative of God, or the universe, or whatever. But maybe, in looking at disability among all the other differences out there, among all people, we could understand God a little better. Maybe we would see a God who creates everyone with utmost care and purpose. Maybe we would finally see that disability is diversity, diversity is disability, and God says both are good. Maybe we would stop pitying and discriminating against God’s people and instead say, “That’s my brother. That’s my sister. I love them.”

People with disabilities, like TAB people, have opportunities every day to show who God is. Maybe one person does it as a missionary. Maybe one does it as a doctor, or a teacher, or a blogger, or a Wal-Mart greeter. They don’t do it just by breathing, the miracle of creation notwithstanding. They do it through life–real life, not the artificial life given to them by people who take control because their bodies work “normally.”

I don’t know why every single person, disability or no disability, is here. What I do know is, we all need the chance to say, “This is who I am, and I’m here because I was created this way. Isn’t that cool? Isn’t my God cool?”

Don’t waste your chance. Use it. You might change the whole world.

Happy April, readers! It’s Throwback Thursday, so to set up this post, I want to share with you a memory from one of my favorite times in my life.

It’s May of 2007, and I’m in London. My college got a grant to take one English major and one history major on a ten-day trip to London and Paris, with the theme of A Tale of Two Cities, and I was the lucky English major. On this particular morning, the history major, our mutual professor Dr. M., and I are watching the Changing of the Guard at Buckingham Palace.

Dr. M. has been a lovely chaperone thus far, making sure things are accessible and safe, and that I have what I need so I can enjoy the trip. In doing so, I can tell she’s built up some questions about my disability, but until today she doesn’t ask. Today she says,

“I’ve noticed you’re really determined to do everything everyone else is doing, and you only ask for help when you really need it, or when I kind of push you.” (True; for example, we brought a wheelchair along in case the extensive walking around London and Paris got to be too much). “How do you decide when to ask for help, or bring up your disability as a reason to do something differently, or not do something?”

And I thought, that’s a really good question. Writing this blog now, I still think so, because as we’ve discussed, people with disabilities often struggle with when to ask for help. I know I do, all the time, because I really would rather never do so. At least, not where my disability is concerned. I’m perfectly okay with saying, “Hey, my hands are full. Can you grab the door?” In school I was okay with saying, “Mr./Mrs. So-and-So, I’m not sure I understand what you just said about buildingsroman novels/why is the answer to this math problem 5.58 when I got 3.76?” But bring my disability into it, and I kind of–no, not kind of. I do feel like a doofus. As a high school junior, I once had to ask a teacher to tie my shoes. Can we say “humbling moment?”

It has taken me a long time to be comfortable asking for help in those situations, and I sometimes still fight it. People with disabilities are simultaneously taught that they need to be independent, yet need help with everything. (Yet another instance of double-talk, although it’s not always intentional). Speaking from experience, that dichotomy can cause a lot of discomfort when you legitimately need help or can’t do something. But it also allows you to think carefully about what you can do. When should you challenge yourself? When should you work, move, or participate independently? When is your disability a legitimate reason to do or not do something? When do you, or don’t you, “play that card?”

As with a lot of things, the answer is different for everybody. If you have severe disabilities, those will probably influence a lot of what you can do, and that’s fine. Yet every situation is different. If your severe disability impacts your ability to speak, it’s absolutely fine to say, “I need X agency to spend money on a speaking device.” But if your severe disability does not impact how you feed yourself, it’s not okay to take someone else’s time and ask to be fed, just because you want the service.

With milder disabilities like mine, it’s a bit trickier. If your disability is mild or invisible, you may have been taught it’s never okay to “play the card.” That’s wrong, because there are situations in which it is okay. I told Dr. M. that my personal rule is 80-20. As in, 80% of the time, I do my best to act independently, to do the things TAB people are doing, and to blend in. And usually, that works. But the other 20%, I do have to say, “I have CP and it’s going to affect this situation.” Example: Later on in our trip, we toured a historic European castle. The problem was, the castle was highly physically dangerous–stairs with no railings, slick surfaces, dark passages, etc. By that time, I had also pulled a knee muscle walking. So on the advice of Dr. M and my classmates, and for my own safety, I said, “That’s fine. You guys go; I’ll grab a bench and chill.” Did I miss touring the castle? Sure, a little bit, but I wanted to be safe. And sometimes that’s the way it is with disabilities. You choose the option that’s safest or best for you in the moment. The people around you should understand that, and if they don’t, that’s their issue, not yours.

The rule is not always 80-20. Sometimes it’s 50-50. For instance, if I go to a picnic or festival, I might be able to participate in half the games or races. And sometimes there’s not a ratio at all. But, are there instances where it is always okay to use the disability card? Yes. Some are, but are not limited to:

1. Life-threatening emergencies. For instance, if you are a PWD caught in a natural disaster, it is okay to ask for medical and other services to see to your needs first. That’s not abusing services; that’s saving your own life.

2. Non-life-threatening, but unsafe situations. See the castle example. And, I learned the hard way, if the bus has priority seating for PWDs, take it. Do not try to stand just because the bus is already crowded and you feel awkward asking somebody to give up their seat. You’ll end up in the aisle the minute the bus moves.

3. Situations in which you could do what is being asked, but are legitimately unsure you could do so successfully. For instance, when my brother and SIL were dating, they came over to play cornhole. I’d never played and gave it a shot, but found out I wasn’t good at it. So I chose to sit out because I’d rather do that than play unsuccessfully. Another example: Let’s say you have a learning disability, and your friends want to play a word or numbers game. That’s your choice–you can participate with them, or you can nicely say, “How about we do something else?” As long as you are not insisting on having your own way, or accusing people of leaving you out when that’s not their intention, you’re fine.

4. Situations in which the other person doesn’t know about your disability. This happened all the time, especially in college. Remember, there are no IEPs at the university level. Therefore, my professors didn’t always know I couldn’t write, unless they had me before. (Even then, I had some profs say, “I’m sorry; I totally forgot.”) In those cases I had to basically say, “CP, remember? But that’s okay; I’ll get someone to take dictation.”

5. Situations of blatant discrimination. Self-explanatory. Never be afraid to blow the whistle on a person or people treating you badly for a disability.

Situations in which “playing the disability card” is not okay:

1. You’re literally playing a card. As in, bringing up your disability exclusively for sympathy or to manipulate a person or situation. Not cool.

2. Situations in which you legit need services, but are abusing them. This is the kid in a wheelchair who can participate in P.E. with modifications, but flat out refuses, or accuses the teacher/coach of “making” him do what he can’t/being unreasonable. It’s the blind employee who freaks out when a colleague, with no malicious intent, says “See you later.” It’s the college student who needs extra breaks during tests, but uses them to “go to the bathroom” and stuff cheat sheets down his pants. (This last one is true. My first college job was as an assistant to the school’s Disabilities Office director. One of her colleagues at another university had that happen to him).

3. Your disability should not/does not affect the skills you need to complete a task. For instance, I have auditioned for plays before and requested a chair, since nerves sometimes affect my balance. That’s fine. What would not be fine is claiming that, because of my specific case of CP, I need a script in large print. I don’t, and if I asked for one, it might take that resource from someone who did.

4. You overplay the card. This is what would happen if, say, I went jogging with friends and not only asked them to stay off rocky trails (legit) but constantly asked them to slow down/asked them to hold my arm the whole way/asked for a break every 10 seconds (not legit).

It can be hard to determine when you really need help and when you’re fine, when your disability should and should not affect certain situations. Sometimes your disability will influence situations unexpectedly–another legitimate reason to bring it up. But remember that as long as you are congenial, and as long as you are addressing actual needs, your disability is always legitimate. No one has the right to deny you help you truly need, or to tell you you’re making stuff up when you’re not. That disability card could be the ace up your sleeve. Be careful when you use it, but never be ashamed of the fact you have it.

Ding-ding-ding! Welcome to the bonus round! It’s been awhile, so I thought you guys more than needed one. Plus, I’ve got a pressing topic that will not wait until next week.

While scrolling through Facebook a week or so ago, I came across the story of a young woman with Down Syndrome whose “dream came true” when she got to report the weather for a local news station. Of course, it was your basic inspiration porn headline, so I was hesitant about reading the article. The article itself isn’t what caught my attention, though. What caught my attention was the comments.

As you might expect, many people wrote in to show their support for this woman, which is great even if they’d taken the inspiration route. Yet others wrote in to say how awful the story was. Not because it was inspiration porn, but because it had been written at all. In their eyes, it was cruel to let this woman report the weather just because she has Down Syndrome. “She is not capable…it is cruel to tell people with disabilities they are just as capable as everyone else…what was she doing reporting the weather…she can’t even read and write.” (According to the article, she really can’t, but that’s not the point). Many of these comments were harsh, derisive, and offensive. When commenters got called on that, they came back with questions like, “Why are people so sensitive?” and, “Since when is acknowledging reality awful? This whole setup was cruel,” and the like. Basically, this story reminded me of a basic truth. Many people out there still believe disability rights are a fantasy. People with disabilities will never be normal, to pretend otherwise is cruel, and people who say otherwise are whiners.

Many of these same detractors claim PWDs should be given every chance at life, and that they deserve love and respect. Frankly, that makes me ill. I understand these people have good intentions; they don’t mean to sound prejudiced, and they probably don’t know much about disabilities to begin with. But this construct is still double-talk. It reminds me of how some slave owners of antebellum America used to talk about their slaves. “They should be treated kindly, but they are inferior to us. They should not and cannot learn. They cannot sustain bonds.” Like I said, makes me sick.

As you know from the last post, I do believe the “like everybody else” argument has a lot of flaws. It is inaccurate, and yes, at times cruel, to tell a PWD he or she can do whatever everyone else can–but not, as some people believe, because the PWD is of a different class of human. That argument is inaccurate and potentially cruel because it takes away individuality. Nobody is like everybody else, disability or not. Nobody can do every single thing another person can, disability or not. But, when you strip a person of his or her basic rights to participate in life, just because you believe “normal” people all do things the same way–that’s what’s cruel.

Do this with me–replace “disability” for a minute. What if, instead of a woman with Down Syndrome, that article had featured a black woman, or a Jewish woman, or a lesbian? Would commenters have said, “It is cruel to tell that woman she can report the weather. She’s capable of reporting the weather under ‘special’ circumstances, but she’s not capable of doing it for real. It is not hurtful or offensive to acknowledge she is different, and will never do/be X, Y, or Z.” Of course not. Number one, under those conditions, that article wouldn’t even be written. That circles back to the inspiration porn problem. But two, it’s just a prejudiced argument. It sets PWDs up as “other,” as “less,” as people who can’t do “real” things. And because of that argument, their lives and experiences continue to be artificial. Their civil rights are ignored because to many people, the rights of people with disabilities don’t exist. They are a fantasy, an idealized construct set up by a fringe group of touchy-feely, bleeding-heart advocates (like yours truly). People who persist in this line of thinking seem to forget, there used to be entire populations of Americans without disabilities who couldn’t read, write, maneuver vehicles, whatever. They went their whole lives without doing any of those things, and they largely were not judged for it. Yet, we continue to judge persons with disabilities. We continue to say things like, “How dare he or she be allowed to do X? She can’t even read and write!” (Well, until about age 5 or even beyond, neither could you, buddy. And by the way, did anyone ever try to teach her)?

When I see comments like the ones I described, and interact with people who think like this, I continue to be gobsmacked. I mean really, there’s not much else to say except, when will the double standard end? We don’t consider the rights of black or Asian people fantastical. We no longer see Jews or Muslims as less capable people. LGBT people are still struggling, but we as a society have moved to a place where equality is more the norm. People with disabilities seem to be the last group it is okay to treat as unequal, just because they were born with, or acquired, the inability to do certain things. And to me, that is a sorry, crappy excuse. I mean, how would you feel if somebody judged you solely on your inability to skydive? Your inability to carry kids to term, or have them at all? Your inability to speak Japanese? What the heck is going on here?

Disability rights are reality. Unfortunately, discrimination is too, and discrimination is still winning on a lot of fronts. Speaking from experience, it’s easy to get battle fatigue. But nothing will ever change unless you take a breather, pick up your sword, and fight on. Fight, because there is a whole population still waiting for basic human dignity.

Hello readers,

If you’ve ever known a person with a disability, read their books, or heard one speak at a gathering, you might have noticed that they all mention something. They talk about how, as a kid or even an adult, they want to be “like everyone else.” I’ve been there too, and I’ve said it. I’ve said, “I want to do this the way everyone else does it. I want to live in a dorm during college because every other high school senior in the country does. I want to get married and have a family at least partially because that’s what women do. Sure, they can have careers and travel and everything–that’s great. Go feminism. But…” And so on. The question coming to my mind today though is, does “like everyone else” mean what we think it does?

I didn’t start to question this until recently, when the people around me started pointing out how different I was from “everyone else,” whether “everyone” was coworkers, fellow church members, family members, or the world in general. Of course, you might say, “Duh. Didn’t you always know you were different, and isn’t that why you write this blog?” Well, yeah, on one level. I think PWDs know they’re “different,” just like people in other minority groups know it. The catch is, sometimes you don’t make the connection until or unless other people say something, or you see others do something in a different way than you. Speaking from experience, a little kid with cerebral palsy may know she has it, but it may not be a big deal until she realizes, she can’t run and play the way other kids can. The light bulb may not go off until she hears a parent or other adult say, “Kelsey can’t do this thing or that thing the way everyone else can.”

And even when the light bulb goes off, sometimes you don’t care. All my life, people told me I couldn’t or shouldn’t play sports. Who cared–I didn’t really want to. My teachers sometimes gave me modified math assignments in place of ones that required a lot of visual work. Who cared–I hated those assignments anyway. Thanks for the break, Teach! Sometimes I even liked being different, as in, okay, my CP probably meant I was more interested in academics than a lot of kids. Great! I got picked first when my class chose up sides for spelling bees. I could participate in Gifted English and kick butt at Quiz Bowl.

But some days, I’m going along living my life, and a coworker or family member says or does something really stupid. I get an email from a team member at work that says, “All our successful writers can format this client’s work correctly. Sarah’s work gets rave reviews from this client. Your work does not.” My dad wants to know why I can’t get into his truck after he waxed the running boards, because my elderly great-aunt and my mom, who has a bad knee, can do it. And I’m like, “Who cares? Why can’t I just do the things I can do, ask for help when I need it, and live life my way?”

Seriously. I want to do well in my work, but I do not freaking care about what Sarah is doing. It doesn’t really help me to know that everybody who is “successful” can do something I can’t. In the words of Stephanie Tanner, how rude. I don’t care if you have to help me into your vehicle, because you chose to wax the running boards. I’ve actually been like this my whole life. My mom and dad never had to say, “If Ashley and Megan jumped off a bridge, would you do it, too?” Why? Because I could care less what Ashley and Megan were doing. Sure, they were my friends. Sure, I wanted to participate in stuff like they did. But when the issue was doing something the exact way they did it, or just because they could do it, I wasn’t interested. If you wanted to get me to smoke a joint, you needed a better argument than, “Everybody’s doing it.” (Actually, that’s probably why no one ever offered me a joint, not that I’d have smoked it).

And yet, “like everyone else” is an argument the TAB world constantly uses against people with disabilities. As with a lot of arguments like these, PWDs just can’t win. We either say, “I want to do this because everyone else gets to/because it’s a milestone/because it looks fun,” and we’re told we can’t. Or we ask for help with something, or ask to do a different activity, and we’re told, “Everyone else is doing this, so you need to do it. If you want to be treated as equal, you have to do this thing this way, period.” Double standard much? You bet it is, and it doesn’t help anyone.

I think the temporarily able-bodied world, and maybe the disability community too, is downright confused about how to approach equality and disability. Some are less confused than others. For example, a lot of people have finally caught onto the fact that “fair” and “equal” doesn’t always mean everybody gets the same thing. But the problem is, when we approach situations on a case by case basis, confusion and resistance still exists. People with disabilities still get pushback. Let’s say Neal has autism. He’s great at creative writing and baseball, so when he wants to participate in those things, most people find a way to make it happen. But when he has a meltdown in class because of sensory overload, suddenly his teachers are like, “Neal, everybody else has to cope with the noises in this classroom. You need to learn to do that too, or you cannot participate.” Should Neal get help for his sensory overload? Yes, but not because he has autism and can’t interpret sensory information the same way everyone else does. He should get help because he is a human being who happens to have a disability that dictates the need for help. Autism doesn’t make him less of a person. It doesn’t mean he gets no choices in how to participate in or react to things. It just means Neal needs extra help in some areas–like everyone does sometimes!

I’ve come to the conclusion that “like everyone else” doesn’t mean what we think it does. It’s not even that accurate a statement, although we still use it. Maybe what we should be saying is, “Neal, Kelsey, anybody with a disability, needs to be treated like a person of equal standing.” What that means is, there’s no double standard. There’s no expectation to hop on some bandwagon related to how everyone else interprets the world. “Treat me like an equal person” allows room for everyone to get the unique help that will make them “equal.” And because “equal” does not mean “exactly the same, all the time, every time,” everybody wins.

Now that is something I can get behind everybody doing, and not just for themselves, but for each other.

Hello readers,

Spring is officially here. The birds are chirping, the flowers will soon bloom, and the sun is out (it’s supposed to get up to 78 where I am today. Not the best news, but I can cope). Around the country, spring fever has likely already struck grade school and college students. But right now, teachers are probably gearing up for last lessons before finals. Often, that involves a lot of review.

Today, we’re going to do a little bit of review ourselves, but much of this post will be new. This blog has plenty of information on how we talk about disability, and things we should or shouldn’t say. For example, there are discussions of person first language (person with disability rather than disabled person), and ableist language (the R word, “cripple,” “spaz,” you name it). Those are still “language barriers” that prevent people with disabilities and temporarily able-bodied people alike from understanding the disability culture and experience. What I’ve noticed, though, is that there are also some common words that cause barriers. These aren’t classically ableist words or phrases. They aren’t meant to discriminate against persons with disabilities. Actually, they’re often considered positive, the way that some labels are considered positive. For example, you remember the label “always happy” for people with Down Syndrome? Yeah, that’s what I mean. Today we’re talking about words that, while inherently positive, have been used to perpetuate the idea that persons with disabilities are “other.” These are words PWDs are tired of hearing, and words we need to redefine. Here we go.

1. Overcome/overcomer.

How it’s used: Often, these words are used to denote that someone is not letting a disability stop him or her from achieving. You might hear a doctor or teacher use it, as in, “I’m really proud of Matthew. He’s done so much to overcome his disability.” You often hear it on TV broadcasts, as in, “Joni has overcome her disability to become a renowned writer and speaker.” PWDs, especially young people, are told, “You can overcome your disability if you try.”

The problem: Using “overcome” and “overcomer” this way implies that people have complete control over how much disability affects them, and the less “disabled” they are, the more accepted they will be in a world where TAB is the majority. It may also imply people who don’t overcome are losers. As in, “Elianna claims she’s in constant pain because of cerebral palsy, but she could overcome that if she tried.” Overcoming can be done, but it’s not about trying or striving to meet an arbitrary standard set by people who don’t have disabilities. It’s about meeting and surmounting obstacles at your own pace. It’s about deciding what you want to do, and what you want to be defined as “overcoming.”

A better way to use this word: Not everything a PWD does successfully is an example of overcoming. I don’t feel like I overcome anything when I write a paper or a blog post or a novel, because I’m already good at that. As speaker and comedienne Stella Young once said, I am not special because I can get out of bed and remember my own name. However, I would consider participating in a physical competition “overcoming,” because my disability does influence performance there. A person with autism might not consider hanging out with his friends overcoming, but he might think he’d overcome an obstacle if he succeeded in a job interview. A better way for the TAB world to interact with this word is to say, “Sometimes Maddie has to overcome things that are difficult for her, but mostly, she’s concerned about helping her community through her outreach to the homeless.”

2. Victory

How it’s used: Often used in a similar way to “overcome.” People with disabilities are considered to attain “victory” if they do something the TAB population automatically assumes they can’t, or would be hard.

The problem: When relating to persons with disabilities, the temporarily able-bodied world takes “victory” completely out of context. They cheapen “victory” because they attribute it to every success a person with a disability achieves. The actual definition is thrown out the window. You achieve victory when you win at something–and PWDs can win just like the rest of us. The problem is, because the concept of victory is cheapened, they often don’t get to win, or legitimately experience the emotions that come with winning. An example would be a well-intentioned parent who says: “Robin wrote her name today. That’s a real victory for her.”

A better way to use this word: I understand where that well-intentioned parent is coming from, because maybe it was a real struggle for Robin to write her name. Yet it would be more accurate to say writing her name is an achievement, not a victory. Achievements are still praiseworthy, and Robin should be praised for what she did. She should be given incentive to continue surmounting obstacles. But she should also be given incentive and opportunities for true victories wherever she can find them. For example, Robin may have poor handwriting, but she may also have a photographic memory when it comes to spelling. If she’s allowed to compete in a spelling bee and wins, or even places, that’s a victory.

3. Inspiration

How it’s used: Yup, this is the biggie, and we all know the problem with it. “Inspiration” should denote a personal achievement that not everyone else can accomplish. It should denote something a person, with or without a disability, is especially good at. Yet it’s applied to PWDs for doing basic, everyday things. We know the pitfalls, so I’m going to jump straight to–

A better way to use this word: If basic, everyday things are a struggle, it’s fine to commend them. If Willow has never dressed herself but masters it, even at age 10, she should definitely get some props. But she shouldn’t be called inspiring for it. Willow’s probably not inspired. She’s probably just happy she did it, as in, “Yeah, I dressed myself. I get that you’re proud of me, but now I have other things to do/be.” Willow should be called inspiring for the things she does outside disability. If she’s a gifted violinist, for instance, she shouldn’t be told, “Oh, Willow, you’re so brave for playing your violin onstage with your disability. You inspire me.” She needs to hear, “Willow, your music inspires me, as do you. Your music is beautiful, and your talent inspires me to pursue my own dreams.”

4. Determination/Determined

How it’s used: A lot of TAB people picture persons with disabilities approaching life with an unusual amount of grit. They picture PWDs fighting to dress or bathe themselves, and then collapsing exhausted when they succeed, as if they’ve climbed Mount Everest. A lot of PWDs are determined, but that’s more a personality thing than a disability thing.

The problem: As with “overcome,” people often use this word in a way that implies disabilities could go away if the people with them just tried harder. The wrong usage also implies PWDs don’t have the right to try something another way, look for modifications, or even give up because they’re sick of trying to do something they know won’t work for them.

A better way to use this word: As with all of the above words, determination needs to be used outside a disability context. Let’s say Hunter has dyscalculia, a learning disability that makes math difficult. Yet he is determined to get good grades, so he studies hard, seeks out his teacher for extra help, etc. It’s fine for Hunter, his parents, and his teacher to talk about his determination in that context. But if Hunter is also a great runner, and is determined to win track races, his determination and grit should be discussed in that context as well. If, on the other hand, Hunter is determined to get good math grades but not do much else, he should be encouraged to use his grit in other pursuits. For instance, Mom or Dad could say, “I see how hard you work at math. That probably takes a lot out of you. You might not want to do chores when you get home, or put much effort into other activities. But I’d like to help you improve that.” This way, Hunter learns his drive is appreciated whether it’s applied to his learning disability or not. He learns to define himself in terms other than “that kid with dyscalculia.”

5. Brave/Courageous

How it’s used: In a similar way to inspiration; TAB people often think PWDs are brave because they do everyday stuff.

The problem: Besides the obvious–it is not brave to brush your teeth or pick up the mail–this often causes PWDs to experience more fear. It happened to me. Oftentimes my parents or teachers, with the best of intentions, would tell me I was brave for doing something I already enjoyed, such as going out for the school play. I get where they were coming from–everybody gets stage fright, and CP sometimes made auditions hard. But I always felt it was a little dumb to call me brave for doing the things I already wanted to do. I also learned to fear that I wouldn’t have courage if I ever had to do something that truly scared me. Therefore, my parents and teachers wouldn’t be proud of me anymore.

A better way to use this word: It might’ve been easier if my parents and teachers had said things like, “Way to go on winning Quiz Bowl; you didn’t even seem nervous” or, “I knew you would ace that audition.” Then, when something was scary, they could’ve said, “I know this is tough, but you have the bravery to do it. I’ll be here if you need me, and if it doesn’t work out, that’s okay.” As with determination and victory, PWDs need real chances to be brave.

Changing the way PWDs and their temporarily able-bodied counterparts view disability is a long process. It will likely be a lifelong one for me and people like me, but we are proud of small changes we see every day. You can be part of that change, and it starts with how you speak. As you work to help yourself and others understand ableist language, think about how to reuse some positive words that nonetheless encourage disability stereotypes. I think our words will be much more appreciated then.

Hello readers,

My television life improved recently because one of my favorite shows, Once Upon a Time, is back for the second half of season six. I know a lot of people think the show has gotten boring and ridiculous, and is dying on the vine. I see where they’re coming from, and can be an objective voice. But the truth is, I still love the show, and see great lessons in it. One such lesson fits really well into this blog. It comes from the second season but is, dare I say, always timely.

The second episode of Once Upon a Time (OUAT) season two is called “We are Both.” By this time, the Dark Curse has been broken and the residents of Storybrooke remember who they are. Psychologist Archie Hopper knows he’s actually a humanized Jiminy Cricket. David Nolan knows he’s Prince Charming. Waitress Ruby Lucas is Little Red Riding Hood, and so on. The problem is, the residents of Storybrooke struggle with these dual identities. That is, in what situations should Ruby be Ruby, and when should she be Red? When are Snow White’s skills as a bandit/archer/princess needed, and when is she teacher Mary Margaret Blanchard? Has David Nolan become so used to being David that he can no longer function as a prince?

David eventually works through this and helps the others do it, too. “We are both,” he tells everyone in a crisis moment. The residents of Storybrooke don’t have to choose. They now live in a world of “and,” not “either/or.” And it occurs to me, why can’t people with disabilities do the same thing?

Often without meaning to, the TAB population, and sometimes people with disabilities themselves, don’t see this option. PWDs are defined only as a humanized diagnosis. They are remembered for what they can’t do or have trouble with, not what they can do or excel in. That’s a huge blow to their self-concept, and it handicaps their lives more than the actual diagnosis ever will. PWDs quickly and erroneously learn to get along in a world where TAB is the majority, they basically have to say, “Hi, my name is David and I have X.” That, my friends, is just as depressing as the Evil Queen/Regina’s Dark Curse.

Sometimes, this either/or proposition goes the other way, too. People with mild or invisible disabilities are especially vulnerable. It happened to me all the time. That is, teachers, friends, what have you, assumed because I got A’s in school, was creative, and could carry on an age-appropriate conversation, I was good at everything. I never needed help. Thus, they were shocked or even offended when say, I asked for help carrying a computer or going up and down stairs.

Like a recently in-cursed resident of Storybrooke, I have struggled most of my life to determine who I am in the context of disability + competence. Few people have allowed me to be both, especially at the same time. While that’s getting better as I get older, it remains a unique part of my dual identity. And I know if I’m experiencing this, other PWDs must be, too.

This is another way in which I implore the temporarily able-bodied world, and even the disability world, to think outside their boxes. In fact, throw out the boxes. No one is ever just one thing. TAB people are allowed to express this simply because they are human. A TAB stay at home mom is not “just” a mom. She’s also a city council member, an alto in the church choir, or a roller derby queen. A TAB teacher is not just a teacher. He’s a basketball player, a champion fencer, a dog owner, and a guy who loves to curl up with the History Channel and a big piece of lemon meringue pie after work. TAB people are allowed and encouraged to wear different hats, but PWDs are essentially told, “You’re either disabled or you’re not. You don’t get to decide where and when you need help/modifications. We decide for you because we know better. If you want to be known as something other than disabled, do not act disabled.”

What a bunch of hooey–and how unrealistic. What if the world treated TAB people like that, as in, “What do you mean you can’t fix your own car? I don’t care if you’re not a mechanic. You’re a lawyer, right? So you should be smart enough to figure out what’s wrong with your car.”

It just doesn’t work, for anyone. Everyone is competent, and everyone has things they need help with, disability or not. Furthermore, the two don’t always run parallel to each other. They can–for example, if I’m in a spelling bee, I’m not normally thinking about CP because it’s not a major issue in that setting. In fact, growing up, I tried to separate myself into two identities. This half of me is the competent person who can do stuff, this half is the CP person who can’t, and may they never meet. But it often didn’t work that way, and still doesn’t. I go out for coffee or lunch all the time, and I am competent to feed myself, pay for my meal, and carry on a conversation. Cutting food or opening condiments however, can be an issue. Thankfully, most of the people I spend time with understand that. They don’t suddenly shun me because they had to help with my filet mignon (actually, it’s usually more like a gyro or pasta, but whatever). They understand I am both.

If you are a PWD struggling to grasp your dual identity, know you are not alone. Know also that the identity doesn’t have to be duel. You don’t have to separate yourself just because that’s how the world treats you. Advocate for yourself as much as possible. Know that you are both, and that’s okay. Disability does not preclude competence, and competence does not preclude the need for help. You will be a much more well-rounded and interesting person as you learn to be both, and I think the rest of the world might learn something, too.

Happy March, readers!

Spring will soon be here, and although I’m hoping for a few more chilly nights to cuddle with my books and electric blanket, I am almost ready for it. Spring means many new things–new flowers, new births, new weather, you name it. I also hope starting this spring, we can continue to embrace new thinking about disability. But before we do that, we have to define the old thinking and sweep it out, kind of like spring cleaning. One type of old thinking I want to tackle today is, what constitutes “autistic?”

And now, submitted for your approval:

Imagine, if you will, a world in which everyone has chosen one set of rules to determine normal behavior. No one has delineated what these rules are; citizens seem to be born with the knowledge. They shake hands and say, “Nice to meet you” when meeting someone new. They switch subjects fluidly in conversation when etiquette calls for it. They “understand” when plans are cancelled or promises are reneged upon. They take in information from all five senses with effortless aplomb.

Yet there are some people in this world who do not follow the rules. These people know the rules, but only because those rules have been told to them over and over. They don’t really understand some of them. For instance, these people are shamed for being upset when promises are reneged upon. They don’t like their hands to touch, and get confused when they say “Nice to meet you” and hear “What’s up,” or nothing at all. They are told their hands are too active, their way of responding to sensory information is abnormal, and that they themselves are alien. They are called Autistics. Their behavior is called Autistic. Many people don’t know what Autistic actually is or means, but they have a sense it is threatening, or negative, or even tragic. At the stoplight up ahead you have entered…

THE AUTISTIC TWILIGHT ZONE.

Okay, so living with autism doesn’t have to mean living in the Twilight Zone. But sometimes it sure feels like that, especially when everyone around you brands everything you do as Autistic. I got the idea for this post after finding a new pin for my World of DisABILITY Pinterest board. The pin basically says, “Expect people to do what they promise. Get upset when they don’t. Expect people to treat you with respect. Why is common courtesy considered ‘autistic?'”

Why, indeed? And yet, it is. Example: Rami’s dad promises this Saturday, he will take Rami to ride go-carts, but on Wednesday, the family gets an unexpected phone call. Grandma is sick, and Mom and Dad need to help take care of her. Rami and Dad’s plans are cancelled, and Rami ends up at Grandma’s all weekend, but it’s not fun because she’s sick. Rami gets upset. He may have a full-scale meltdown or he may just say, “Hey, I’m mad because…” But because Rami has been diagnosed with autism, his parents write off his feelings as ‘autistic.’ They may even say, “Can’t you see Grandma is sick? This is not all about you!”

Now, can Rami’s meltdown be dealt with if he has one? Yes. Does he need to be kind and empathetic to Grandma? Yes–and he can do that. He’s probably already learning how, despite what people say about autistics having no empathy (what a bunch of ding-dongs). But, does he have the right to feel angry because Dad promised him something and can’t follow through? Yes. Even if Dad had a good reason, Rami can still be upset. He’s not “being autistic,” he’s having normal feelings. He’d have even more reason to be angry if Dad reneged for a selfish reason, such as a last-minute trip to the sports grill with his buddies to watch the game. But for some reason, people with autism are somehow expected to “understand” when this stuff happens, while neurotypical people are often told, “I understand how you feel.” A lot of times, people with autism don’t even get a basic apology for this kind of thing.

Another example, and one I’ve heard quite a lot: Adalyn has been diagnosed with autism, so her parents send her to social skills therapy/training. Her social skills coach tells her that the proper way to greet someone is to shake hands and say, “Nice to meet you.” So naturally, Adalyn tries this on a classmate of hers (let’s say these girls are anywhere between 10 and 14). The problem is, most kids don’t shake hands. They greet each other but don’t say “Nice to meet you.” Adalyn gets a bad reaction; maybe the classmate looks at her weird or says something hurtful. When Adalyn reports this back to the social skills coach, he or she simply assumes Adalyn didn’t “do it right” or didn’t understand instructions because she’s autistic. Adalyn will probably be written up as “failing” to meet a social skills goal.

Here’s a third one, which is more common in the adult world. Celine works at a large creative firm–we’ll call it a publishing company since I’m familiar with that world. She has been diagnosed with autism, but only her supervisor knows. During lunch, Celine shares an idea for a marketing campaign with several coworkers. At the next day’s team meeting, her colleague Brooke claims Celine’s idea as her own. When the women are alone, Celine demands to know why Brooke stole her idea. She’s visibly upset. Brooke reports this to the supervisor, who calls out Celine for acting “autistic,” though perhaps not in those words. Celine is expected to understand that her idea was not copyrighted; therefore, Brooke has some right to it, especially since Celine shared it. Celine is accused of being aggressive or having an outburst, as she has been before when responding to disrespect.

Call me kooky, but in the spirit of upcoming St. Patrick’s Day, this all looks fishier than green beer. Yet it happens in the real world all the time. Autistic people are penalized for being themselves, and “autistic” is used as a byword for something other people don’t want to be. Now yes, I do understand that sometimes social rules can be complicated. If Celine yelled at Brooke about stealing her idea, yes, that would be considered disruptive. If Rami disrespects his parents because he’s upset that he can’t go go-carting, that’s a problem. My question though, is why we are redefining common courtesy, more to the point the expectation of it, as something only autistic people engage in.

Think about it. Would you say to a Muslim colleague who greets someone in Arabic, “You’re doing that because you’re Muslim, but this is America.” Would you say to a black child, “White kids don’t throw tantrums when this happens; why are you doing it?” Would you tell a lesbian coworker, “I didn’t steal your idea. It’s not stealing if it’s not copyrighted. Do you think I’m discriminating against you or something?”

No, hopefully not. So why are we holding people with autism to an entirely different set of standards, yet changing those standards whenever we feel like it? Why are we telling them they have to be polite, let others go first–in general, “play nice”–when we ourselves don’t do it? Why do we shove down autistic people’s throats that they have to respect others, when neurotypical people constantly disrespect them? Show me the exit to this Twilight Zone ride, I want off!

So, what should we do instead? Let’s go back to our three examples and see what happens when we treat autistic people’s feelings and expectations as normal and right.

Rami is upset with Dad because their plans were cancelled. So Dad sits down with his son and says, “Gee pal, I know this must be a disappointment. Why don’t we think of ways you can help Grandma feel better? If things aren’t too serious, maybe you and I can slip out for a little guy time later. Mom and I will make sure you have fun things to do, and that we spend as much time with you as we can. Do you have any questions about what we’re doing or what’s happening with Grandma?”

Adalyn tells her social skills coach the “nice to meet you” thing didn’t go well. In some cases, her parents or guardians may get involved, suggesting that certain techniques may not be best. (Remember that if Adalyn is a minor, she may need some help self-advocating). Ideally, the coach says, “Okay, let’s try something different. How about X, Y, Z?” Ideally, the coach also asks Adalyn how, with whom, and under what circumstances she’d like to socialize. The coach then tailors Adalyn’s work to that as much as he or she can. After all, you socialize in a different way at the mall than you do the park, or attending a friend’s game or recital.

Brooke does tell her supervisor she’s upset because Celine yelled at or demanded something from her. The supervisor listens, but ideally, she also gets Celine’s side of the story and believes it. The supervisor may say something like, “I didn’t know that’s what happened. Would you like me to speak to Brooke or do you have another idea?” If Celine has a mentor–which all people should, autistic or not–maybe the mentor can say, “Wow, that was unfair. Do you want to talk about it?” Then maybe the mentor can explain, in an appropriate way, why yelling didn’t work, or how Celine might approach the situation next time.

See the difference? I do, and I like it. Yes, people with autism should have that part of themselves acknowledged. Yes, sometimes it requires thinking outside the box, but I never liked the box. Instead of saying, “Oh, he/she is just doing that because of autism,” I suggest we try saying, “Oh, he or she needs something I’m not giving. Let’s work together to figure out what that is.”