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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.”

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.