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Archive for January, 2017

Passing for Normal? How Much Disability is Our Society Willing to Tolerate?

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.

What is God’s Plan for PWDs?

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

I say: I feel so alone in this.

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

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

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

 

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

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

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

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

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

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

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

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