Blog Bonus: Neurotypical Awareness or, Well, When You Put it That Way…

So clearly, I should have waited a day before writing my last post. Apparently, there are people out there questioning Autism Awareness Month by making memes and writing blog posts that address Neurotypical Awareness. In other words, what it would actually look like if we talked about neurotypical people and “awareness” of their “condition” the same way we talk about autistic people.

And guys, they FREAKING NAILED IT.

I could pick out and describe some of my favorite memes or direct you to a blog post while expressing my own opinion, but other people are doing it a lot better than I ever could. So for this bonus, I direct you to a couple of great links:

http://www.disabilityandrepresentation.com/category/neurotypical-awareness/

Neurotypical Awareness

https://www.facebook.com/NeuroTypical-Awareness-299851036850072/

*Note: I had a lot of trouble copying/pasting these. If for some reason they are not clickable, please type or paste them directly into your browser. Or, simply Google Neurotypical Awareness for more hits and a lot more opportunities to rethink this whole “awareness” construction.

 

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Awareness vs. Acceptance and Why it Matters

Happy April, readers. I hope you all had a joyous Easter and Passover season, as well as a lovely spring break. It’s been a hectic time of year, and if you’re a regular reader, you might know it’s also the time of year for another big event. Yes, it’s that time of year again (groan). Autism Awareness Month.

As we have discussed, awareness in itself doesn’t have to be bad. But one, setting aside one month for awareness of a disability has a lot of pitfalls (March is CP Awareness Month, October is Down Syndrome Awareness Month, you get the idea). And two, as we have also discussed, acceptance trumps awareness.

The argument there is of course, you can’t accept something until you’re aware of it. I’ll buy that. You can’t accept that your loved one has a disability until someone makes you aware of it. You can’t know whether you accept pineapple as a pizza topping until you’re made aware the combination exists (BTW, I do not accept pineapple as a pizza topping). You can’t accept the full responsibility of owning a dog or cat until you are made aware that this is not the same responsibility level as owning a turtle or a hamster. I get it. But this month, I will begin by pushing, again, for acceptance over awareness. Why? Well, let’s break it down.

Awareness says: My primary responsibility is to acknowledge and move on. (Morgan has Down Syndrome. Zane has CP. Jewel has autism. Okay, fine, done).

Acceptance says: My primary responsibility is to acknowledge and respond. (What do these facts mean I need to know about Morgan, Jewel, or Zane? How can knowing these things help me treat them as part of the group)?

Awareness says: Your condition = your story. And we do not need to hear that story unless we are being made “aware.” It’s not always meant like this. For instance, if I give my testimony at a church gathering, then yes, CP is going to be a big part of it because having CP has influenced my relationship with/to God. If I am invited to speak about CP to people who know nothing about it, I will do that. Yet it continues to mystify me that 9 times out of 10, my story is not personally invited unless disability is somehow tied to someone else’s main theme (e.g.: the sermon on “don’t give up,” the lecture on myths vs. facts).

Acceptance says: Your story involves every part of who you are. You are welcome to share any and all of it as part of what we’re doing. Yeah, you might want to know about living with CP, and that’s cool. While we’re at it though, I also happen to be a published author who’s been writing since she was six. I have unique stories based upon my identities as Christian, woman, Scots-Irish, whatever. I have a unique story based on my experiences with certain books, movies, TV series, you name it. Acceptance asks me about those, and cares what I say.

Awareness says: Be wary, be aware. A lot of “awareness” campaigns focus on what makes a disability “wrong.” I was inspired to write this post after seeing a letter from Autism Speaks posted on Facebook. The letter was addressed to a woman with an autistic son, and Autism Speaks asked her for a donation. The letter describes autism as a “burden,” “public health crisis,” and “shocking” disorder. But in the name of “awareness,” that’s okay. According to Autism Speaks and organizations like them, to be aware means to be afraid. It basically means to spread the word like wildfire, like terrified villagers running from Frankenstein’s monster.

Acceptance says: These people are here, they’re not going anywhere, and it is our duty to welcome them. You do not call a person, a human being with a heartbeat and breath and feelings, a burden or a crisis. Just. Don’t. Do It.

Awareness says: Be aware, but know this has nothing to do with you. It inspires distance, and it removes responsibility. It says, unless you yourself or a loved one is a PWD, then the only thing you can do is acknowledge and walk on.

Acceptance says: This disability has everything to do with me. Why? Because the PWD you see is a fellow citizen. He or she doesn’t have to be your family member, or your best buddy, or even somebody you like all that much (yes, some PWDs are unlikable for non-disability-related reasons; check in for more on that next time). But because that person is your fellow human, you must respond to their experiences when they are presented. You must be willing to listen and say, “Okay, now that I know this, what’s the best thing I can do to inform myself more/make things better?” We are moving past the idea that, “If I’m white, black people’s experiences have nothing to do with me. If I’m a Gentile, Jewish narratives don’t impact me.” Shouldn’t it be the same for persons with disabilities?

Awareness says: If I help, I’ve done all I can. Helping is good, but remember that we are neither your charity project nor your good deed. But because awareness campaigns are so focused on help, that’s the unintentional message.

Acceptance says: Real help involves living and moving and being with this person as much as I can. That way, the focus is pulled away from a helped/helper relationship. The relationship begins to grow less stilted and more natural. When help is needed, it’s given, but the main focus is the person’s strengths, talents, and overall growth.

Awareness says: We have to focus on awareness because nothing else will change. I’ve been here, especially living in the place I do. There are very few real services or options, and I don’t see a whole lot of change for the better for PWDs, either in my community, statewide, or nationwide. But I have to believe I’m not the only one seeking change, and so do you. We must stop repeating the same old narrative that goes, “I/my loved one has a disability, and because of it, life is hard.”

Well, life is hard for everybody. As Severus Snape once said, “It may have escaped your notice, but life isn’t fair.” (Yeah, I’m coming out as a member of Team Snape, although, wonderful person he is NOT). Disability may make it harder, but you know what? So does divorce. So does cancer. So does poverty. So does not knowing if your adult child, who rebelled against you years ago, is ever coming home. So is…whatever. Can we all please stop singling out disability as the hardest, most horrible thing, the ultimate example of martyrdom and suffering, anyone will ever experience?

Acceptance says: The disability will always be there, but how we approach it can lead to change. Allow disability to become just one of the circumstances that can make us grow, that can turn us into stronger, better people. Allow it to be organic. Stop feeding on the “harsh reality,” and start snacking on the “real reality.” (Harsh reality = things like, my kid has an IQ of 60 and needs 2-3 therapies. Real reality = My kid will live independently, have a job and friends they want, and bless my life, because I will make it so).

So…now that you’re aware…

Accept.

No One is “Doomed” to Disability

Hello readers,

“It could be worse. You could be disabled.”

“It could be worse. You could not be able to do X at all” (usually under the breath, while gesturing at a person who cannot walk, see, hear, what have you)

“He’s such a bigot. He doesn’t know all it takes is one accident, and that could be him” (in an attempt to make you feel better about the idiot who said something snarky about your disability).

Hands up–have you ever heard these things, or things like them? Have you ever said them, to or about yourself or someone else? Full disclosure: I have, before learning better. I was pretty fond of that last one, considering I have known a lot of people who said stupid stuff or refused to hang out with me because, “She’s weird” or “Well, what can she do?” It made me feel better to think that those people were naive and stupid.

Recently though, I heard a different take on this issue that I’m going to embrace. I don’t remember who wrote it or where I read it, but I read the words of someone who questioned why we constantly use disability in a threatening manner. As in, “Don’t make fun of that person in a wheelchair; one day that could/will be you.” Like many constructs, this one is so common it’s rarely if ever questioned. But being the person I am, who questions everything, I say it’s time we question it.

Why do we do that, as temporarily able-bodied people or people with disabilities? Why in particular do PWDs do it? Of course, I know one answer. We do it to make ourselves feel better, to give ourselves an edge over other people’s bigoted attitudes, whether said attitudes are intentional or not. And using disability as a threat does make us feel better, because technically, it’s true. Remember, disability is the most fluid minority we have. With one car accident, slip, fall, illness–you can sustain a permanent and life-altering disability. Is it a pleasant truth? No. But it’s kind of like, “You can’t eat chocolate three meals a day.” The truth exists and we need to say it, because just like some people live on chocolate, some people don’t realize how prevalent disability is. They have yet to understand that as a people group, PWDs are here and are not going anywhere.

Just because that’s true, though, does it mean we should say it? I’m reminded of a meme I sometimes see on Facebook that goes a little something like this:

Is it TRUE?

Is it NECESSARY?

Is it HELPFUL?

Is it KIND?

If yes to all four, then say it.

Now, the idea that you shouldn’t be prejudiced toward PWDs because one day you could be that person, is true. It’s sometimes necessary. But it’s not always helpful and it’s not always kind. Why? No, not because it’s “mean,” although the statement can certainly be that. And again, I’m not trying to be the Word or Thought Police. I’m asking us to drop this construct because:

-It is not kind, to people with or without disabilities. To people with disabilities, to use disability as a threat is to say, “This person’s life and situation is one you do not want. This is a person you should not want to be/become.” It reduces that person to a thing. They’re not Hannah anymore, or Ping, or Jack. They are their disability. They are a problem.

To a TAB person, using disability as a threat actually reinforces bigotry. It says, “You will one day become like this person, and then you will be viewed like this person, which means you will be treated as less.” And because this world has not yet gotten beyond the stigma of disability, that is a true train of thought. But it is unnecessary, unhelpful, and unkind.

-It enforces the idea that disability is a tragedy. Of course, using disability as a threat does not work for all disabilities. You can’t very well gesture to an autistic person and say, “That could be you!” (Well, I guess you could if that person was undiagnosed, but whatever). The problem is that to frame disability this way, or to say something like, “At least you’re not autistic,” tells people it’s okay to react to PWDs with pity. It tells them it’s okay to assume that living with a PWD is stressful, that he or she is a burden, that he or she has no strengths or skills, and all kinds of crap like that.

-It gives PWDs a toxic, false sense of power. Remember, I’ve said this stuff, and I repent. Why? Because I now understand that I have mostly said or thought it from a bad place. I never said or thought it because, “Well, it’s true, just like it’s true that 2 + 2 = 4.” No, it was meant from a vengeful place, a place that said, “I hope someday you know what it’s like to be me and that it sucks for you, too.”

Now, is that understandable? Yes; after all, I am a flawed and broken human. When somebody messes with me, it is in my nature to think things like, “Someday you’ll get yours.” And according to my belief system, if that person is unrepentant, he or she will be judged. According to your belief system, it may be that person builds up some bad karma and comes back as an undesirable being. It may be that his or her soul disintegrates like Voldemort at the end of the Deathly Hallows. I don’t know. And quite frankly at this moment, I don’t care. Why? Because no matter what your beliefs, revenge is a bad place from which to do or think anything. It’s a wrong motive. As a wise person once said, it’s like drinking poison and expecting the other person to die.

-It gives TAB people a different version of that sense of power. In other words, using disability as a threat makes TAB people sound like, “Okay. I’m gonna judge you, and I’m gonna hope something bad happens to you. You know what that thing is? I hope you have to live with disability, because disability will wreck your life.”

At that point, not only are we back to the “tragedy” rhetoric, but we have set ourselves up as judges no matter what our bodies and brains can or can’t do. We also give PWDs a sense of powerlessness. As in, when a TAB uses disability as a threat, it’s like they’re pointing to a PWD and saying, “Don’t you realize you have it better than poor, miserable Athena over here?” Do they mean it like that? No, not usually. But… And you see where it goes.

-It reinforces the idea that a life with disability is a life without hope or a future. I’m not going to spend a lot of time here, except to say it’s still true. But the only reason this is true is, we as a people have not yet de-stigmatized disability. We have not yet accepted PWDs and their differences as part of diversity. And until we do that, disability will be used as a threat. The negative picture of it will not change – at least, it won’t for some people. You know, the outright bigots, or the people who say things like, “You’re too disabled/not disabled enough to understand where I am coming from. You are not/do not live with my child. You do not have to modify your business/leisure activity/place of worship.”

-Using disability as a threat places PWDs in the position of choosing between their lives, and death. There are still people out there who think it’s better to be dead than have a disability, even if they would never say it. And it sets us – I’m including myself in there – up to agree.

What do I mean? Well, you guys know, I watch a lot of medical shows. I’ve thought a lot about what I’d do if offered a cure for CP, and what it would cost me. I’ve thought a lot about what I might do if I were faced with the choice of dying, or living with a severe injury that took my brainpower, my ability to analyze, my personhood, away. And I’ve come to the conclusion that….well, I don’t know. I don’t think I would be “me” without those things, disability or not. And my faith does teach, to live is Christ and to die is gain. But if forced to choose, or if God took me to Heaven and then said, “Go or stay, your call,” I just don’t know. Because if I feel the stigma now, if I struggle now, how much worse would it be if my CP were compounded or “worse?” Because as long as we use disability as a threat, or set it up as a tragedy, that stigma still lives on.

-It minimizes other people’s lives, experiences, and problems, disability or not. The idea that, “It could be worse, you could have a disability,” not only sets up disability as the worst thing that could happen to you. It also looks at people who have other struggles and experiences, and scoffs at them. It says, “Because you do not have Down Syndrome or autism, because you can walk, because you are not blind or deaf or living in chronic pain, your struggles are not real. Your experience does not matter and you have no right to speak.” And that’s not a truthful, kind, helpful, or necessary thing to say to anyone.

It’s gotta change, guys. I know that won’t happen all at once. But we can start with little changes, and I’m telling you now, it starts with me.

I may slip up. I may have a vengeful thought now and then. But I promise anyone out there who’s listening, and the God I know is listening – disability is part of my life and personhood, and it’s part of theirs, too. I promise to no longer use it as a threat, or an excuse to tear somebody else down.

Anyone out there with me?

Good. Let’s do this thing.

Getting Beyond “Behavior”

Hello readers,

How do you behave? Now that you’re an adult, do you even think about it much? (I’m assuming most if not all of you are law-abiding citizens who actually *care* how their behavior affects other people, so as long as you aren’t openly flouting anything, you don’t really think about it). Sure, you have moments where you behaved badly and look back on them with regret. And certainly we all have moments where “good behavior” helped us get where we wanted to go in life. But after a certain age, I doubt most of us go to bed thinking, “I was good or bad/my behavior was good or bad today.”

And yet, that’s not the case for many people with disabilities, child or adult. Their behavior is analyzed to death, almost from the minute they can understand what that word means. Even as adults, PWDs don’t determine what acceptable behavior is. Other people determine it for them, and those people, usually temporarily able-bodied, have some stake in controlling their behavior. Many PWDs, especially those with intellectual, emotional, and cognitive disabilities, cannot stop this control because they have no means to do so. Or if they do have means, they might allow the control to go on because it’s easier to give in than to fight back (and then be chastised again because of “behavior.”)

Now, I know what you might say to this, because I’ve said it to myself. “Chick, everybody has to behave, or the world devolves into chaos. And disability is not the only determining factor in whether your behavior is controlled. My boss controls my behavior at work. My spouse doesn’t control me (we hope not), but his or her behavior feeds into mine, so we try to be mutually beneficial to each other. My faith controls my behavior because I want to please my chosen deity.”

Okay, I’ll buy that – but only up to a point. Why? Because in all three of those cases, you still have free will. People with disabilities have free will, too of course, but the key is, the TAB population has an easier time exercising it. That is, if you don’t like something your boss is doing, you can go to him or her and say so. Hopefully, you’d do that in a respectful manner and your boss would respond to what you needed. But even if you walked into your boss’ office and screamed, “You can’t fire me, I quit,” that would ultimately be your decision. Unless you breached security or got violent, no third party is going to track you down and tell you that you exhibited “bad behavior.” You are not going to be penalized for quitting that job because it violated another human being’s schedule or plan for you. The same is true for your spouse or your deity. You can choose to sin, but your deity still accepts and loves you (depending on your religion, you may have to do penance, but that’s coming from the God of the universe, not some human team that thinks it knows better than you). Your spouse too, may argue with you, but he or she will still love you and treat you as an equal partner.

For too many people with disabilities, this simply isn’t so. Now, we’ve talked a lot about behavior plans and how ridiculous it is that they’re placed on people who have no say, especially adults. I’m not reopening that part of the discussion, but it has occurred to me: when and how do we get beyond “behavior?” Where people with disabilities are concerned, do we see only the “behavior” or do we solve the real problems? Why do we focus so much on behavior, and when did we start doing it? Is this fair to our fellow humans, just because they can’t walk, talk, turn in schoolwork, eat, or use the bathroom the way other people can?

I’ll give you an example, which inspired this post. It’s from Pinterest, an excerpt from an elementary-level behavior plan. The plan is written for a hypothetical student named Liz. It’s divided into sections such as Behavior (what is Liz doing that others don’t want her to do) and Function (why is she doing it)?

At first, the plan seems pretty straightforward. Liz is blurting out in class. Her teachers, IEP team, whoever, have determined she does that to get attention. Under “Function,” it is written that Liz receives no positive attention from her classmates and has few friends. Therefore, she blurts out in class. If P, then Q. A + B = C. I’m tracking with ya.

But then we get to the nitty-gritty, the place where the team writes down how to solve the behavior. They list three “reinforcers”: iPad, dolls, and M&Ms. In other words, Liz gets one of these if she “behaves” by not blurting out. She is also monitored throughout the school day to ensure she does not “blurt out.” Liz is encouraged to self-monitor, along with her teachers, and give herself “cool points” on a behavior chart–but ultimately, those in authority decide when and if she receives reinforcement.

Is there anything wrong with the reinforcement itself? Potentially, no. I bet there is not a parent or teacher among us who has not used positive reinforcement at some point. And if Liz is an elementary student, these reinforcements may be appropriate for her. Too often though, students are given reinforcement that is not appropriate. (I still clench up when I remember Cora, a “special ed student” in my high school who had to “work for” rewards daily. Every day, her chosen reward would be posted on the white board for everybody to see–ex.: Cora is working for ____ (a drawing of a can of Pepsi). Now, Cora had a low IQ, and she probably loved Pepsi. But gosh, she was in high school. After she’d been working hard to “behave” and “control herself” all day, did she really want that soda – or did she want the soda, but maybe something more meaningful, too?

Aside from inappropriate reinforcements, this type of attitude toward students, and especially adults with disabilities, does not help us move beyond “behavior.” It entrenches us more deeply, so we can’t solve the real issues at hand. Let’s go back to Liz. Do you remember what her team determined the function of blurting out in class was? They said she sought attention, and that’s probably true. But they also said Liz does not get positive attention from classmates and has few friends.

Gosh. If that were the case for me, I’d probably spend the whole class yelling! Whoever Liz is – and I’m not talking about the character, but whoever she represents – I bet they are screaming, inside and out. HEAR ME! SEE ME! PAY ATTENTION TO ME!

And yet, behavior plans don’t feed that need. They treat the symptom, not the underlying problem. The sniffle, not the cold. Now again, I understand that sometimes you have to treat the symptoms. If David is spending your entire class period screaming curse words and trying to hit people, he can’t learn and neither can anyone else. And depending on a number of factors, you may need to come up with a “plan” to help David. But:

(1. You have got to make sure the plan really helps. In other words, if David is yelling curse words because he likes to shock people, give him another outlet for that energy. Running and yelling at recess is appropriate (and because of that, don’t use recess removal as an automatic “behavior plan” punishment). Reading scary stories out loud, or telling them to classmates as part of a project, is appropriate. Yelling curse words is not.

Same for Liz. If the real problem is that she has few friends, her classmates pick on her, etc., treat the root. You cannot and should not force Liz’s classmates to be her friends. But you can and should get to know Liz as a person, not the misbehaving student who needs a plan. What makes her tick? What interests her? What does she have in common with her classmates? Is there a club or group she can be part of? With education, will her classmates become more willing to include her? You get the idea. And by the way, if you present Liz as a person instead of a “special” kid with “special needs,” you’re more likely to see more inclusion. Kids include by nature. They exclude only after we tell them to.

(2. The plan is not a god, and neither are you. In other words, yeah. As a teacher or paraprofessional, you may be required to monitor a PWD’s behavior. But for heaven’s sake, quit hovering. We’ve got enough trouble with helicopter parents; we do not need helicopter teachers, social workers, caregivers, etc. In other words, let’s say Fiona likes to communicate by giving people hugs, and sometimes she does it too much or too hard. It’s okay to say, “Thanks, but I don’t feel like a hug” or “Ooh, that hurts. Easy.” It is not okay, especially if Fiona is an adult but no matter her age, to say, “Now Fiona, we talked about this. You are not allowed to hug anymore today.”

(3. Make sure the behavior really is a behavior.

What do I mean by this? Well, I’ll keep it succinct. Persons with disabilities live in the same culture we do, but in myriad ways their culture is different. It has been called a “culture of caring,” where PWDs are so busy being cared for that they don’t get much of a chance to experience life as people first. But there is also the “culture of compliance” where, as others have said, “compliance is king.” We talked about this a little bit when we discussed PWDs and sexual abuse. It’s what happens when so much energy is focused on compliance, on making sure a PWD of any age obeys, that they have no avenues toward self-preservation, self-determination, or quality of life.

Now again, I’m not saying that if PWDs are expected to obey, their quality of life is automatically kaput. What I am saying is that as a society, we focus so much on compliance for this one group – and in turn hold them to so many double standards – that we don’t differentiate anymore. Everything is a “behavior.” There’s no reason behind it or if there is, it’s very basic or selfish, as in, “Lily is only doing this to get what she wants.” We can no longer look beyond “behavior” to see what this person thinks, feels, needs, or yes, wants (and those wants are legit, whether you think so or not). And as you know, when your needs, wants, thoughts, and feelings are ignored, what do you do?

Right. You behave badly.

Behavior exists. The key is, it is not the be all end all, even and especially for persons with disabilities. We say we love, respect, and want to help PWDs. I say it’s high time we behave like it.

 

I’m Not What You Think – But I Am More Than What You Think

Hello and happy March, readers. As winter winds down (le sigh), we gear up for another month here at the Nest. Let’s get to it.

I got the idea for this post after seeing an anonymous post shared on Facebook (because when you’re a PWD who is also a nerd, well, you spend more time on social media than some other PWDs might). The post was titled, I Am Two. It sought to probe into and explain the feelings and actions of two-year-olds–actions that are sometimes unfairly termed bad behavior.

And let’s think about that. If you have a two-year-old in your life, or have even encountered one recently, you know what I mean. Two-year-olds are, well, mysterious little creatures. They can walk and talk, but sometimes not well. They fall down a lot, and you might need to know a little Toddler-Ish to communicate with them effectively. They have words , but their vocabularies are still developing. They know “mad,” “sad,” “glad,” and so on. But they don’t know how to articulate, “I’ve had a bad day because some kid swiped my toy at preschool, but Miss Maxine put *me* in time-out. And then my shoes wouldn’t stay tied, and I had an accident and everybody laughed at me, and NOW you tell me we can’t stop for ice cream? MY LIFE SUCKS, MAN!” Two-year-olds can’t say that, so what do they do? Right–they scream and yell until they get heard, gosh darn it. And, two-year-olds can’t predict long-term consequences. They know, for instance, that if P, then Q (if I finish my vegetables, I can have ice cream). But they may or may not know that if P, then Q, but if and only if R (if I finish my vegetables I can have ice cream, but if and only if my big siblings didn’t eat it all, or if it’s a Friday night, or if…whatever).

It’s tough being two, guys. And the author of this post knows it. Maybe he or she has a toddler at home, or maybe he or she is just observant. But the poster gets right to the heart of it, saying things like:

“I want to dress myself. You say we don’t have time, let you do it.”

“I want to tie my own shoes. You say I’ll get it wrong, let you do it.”

“I can’t reach the book or movie I want. I’m too small.”

“I want to eat the food in front of me, but it smells weird, and I don’t recognize it, and you say I have to have this many bites. And there’s so much food on the plate, I don’t even know where to start.”

“You tell me it takes too much time, I’m too small, it’s too hard. You won’t let me do what I can do or want to do. I get mad and yell or cry, and I want someone to hold me. But you just say no.”

Now, I bet you guys know where I’m going with this, but before we go any further: no. I am not for one minute saying that people with disabilities are grown-up two-year-olds. (Some may have the cognitive age of two or three, but I’m not reopening that can of worms. Basing all your thinking on cognitive age too easily leads to ableist thinking). What I am suggesting to you is, PWDs have a lot in common with two- and three-year-olds when it comes to the way they are expected to live their lives. I read that I Am Two post, and I gotta tell you, I could’ve cried. Why? Because I know how that feels, and I’m 30 years older than two!

I’m sure other persons with disabilities can identify with this, no matter their “functioning level.” As in, I can identify with it because so many people have underestimated what I can do, or overestimated and then blamed me for not meeting expectations. If you have a severe physical or cognitive disability, perhaps you can relate because conversely, people expect little or nothing of you. Neither case is fair, and either case feeds ableism. So think about this for a minute. Let’s put a spin on I Am Two, okay? We’ll call it I Am Different (for now, working title).

 

I Am Different

Everyone tells me I am different. My parents, my doctors, my teachers, the therapist you make me go to. How different am I supposed to be? I don’t feel different.

I want to dress myself, feed myself, groom myself, pick out my own clothes, and style my own hair. You say I’m too slow, there’s not enough time, and we have to be somewhere. Let you do it. You say I can do it when there’s enough time to “practice” these “goals.” But when there is time, I want to play. I want to watch TV, or read, or try to make friends, or hang out with friends and family members. I don’t want to “practice” what other kids can do without thinking. And if I do have to “practice,” why does it feel so boring? Why isn’t it any fun?

I want to choose the meals we have. You say, “When it’s your house/when you pay for groceries/when you can cook, you can pick.” And yeah, I guess that’s something parents, or caregivers, say. But you won’t *let* me do those things, so I may never get to pick. And if I can’t make that kind of decision, how am I going to learn to make solid, permanent decisions about stuff like jobs and marriage? (Well, wait, you don’t let me do that, either).

Yeah, I have a “disability,” but my brain is fine. I want to be in the gifted classes at school; they look like more of a challenge, and so much more fun. But you tell me it would be too much work on the teachers, and besides, I haven’t “earned it.” (How do you “earn” the right to be in the classroom, in a system where education is supposed to be for everybody)?

Yeah, maybe I don’t understand everything you do, the minute and the way you do. But I know if P, then Q. So if I do P, why won’t you give me/let me do Q? Why do you keep changing the rules so I keep having to “earn” Q? Even and especially when Q is something everybody else gets (ex.: Everybody gets to have recess every day – but I can only have it if I get enough stickers on a behavior chart)??? Why do you do that? I may not know everything, but that doesn’t mean I can’t learn. And even if I don’t know what you think I should, I know what “fair” is. I know what’s right and wrong. And what you’re doing may be wrong.

You tell me to stop clicking my pen, twirling my hair, doodling, or echoing what you say. You call it “disruptive” or “noncompliant.” But you don’t say that when Johnny taps his pencil or Suzie twirls her hair. You accept it as a “quirk” or what they do to help them think. Why am I disruptive if they’re not?

Some of the kids or teens or young adults I’m around act their age. Sometimes they don’t. But for them, *not* acting their age is allowed. You don’t “assess” them to determine what their “real” age is (isn’t your “real” age how old you are on your birthday)? But if I don’t act or speak or think on a certain level all the time, you tell me I’m acting like a baby, a child, foolish, or even stupid. You decide that’s a reason not to let me have the job, home, friends, or activity options that I want. And that’s if you even know what I want, because sometimes you just don’t listen.

You tell me that to go to college or live on my own, I must do a whole list of things, to your specifications. And that list feels so long and impossible, I just break down and cry or shut down, or melt down. And then you say, “Fine, then we won’t do it.” No, that’s not what I said!

It’s just hard. I need someone to hold me. To encourage me. To tell me it’s okay, even good, to be who and how I am. But too often, I’m told I’m “noncompliant,” or a “snowflake,” or have “bad behavior.” None of those are true. I’m just different.

And guess what?

You may not know it.

You may deny it.

You may try to hide it.

But you’re different, too.

 

Night to Shine: As Shiny as We Think?

Hello readers,

Last Friday, my church was the location for a Night to Shine prom. If you aren’t aware, this is a nationwide prom, which has since gone international, sponsored by the Tim Tebow Foundation. It is aimed at “people with special needs” (the foundation’s words, not mine).

We hosted over 100 guests and over 200 volunteers for Night to Shine on Friday, February 9. Everyone had a marvelous time and felt loved and important. And you know something? I’m all for that. I’m happy my church got to participate, and that people were able to help each other feel valued.

That’s right. If you have ever participated in Night to Shine or a similar event in any way, I have no issue with that. My goal on this blog has never been to “steal” anyone’s happiness in any way. On this day, Valentine’s Day, anything that makes a person, with or without a disability, feel loved should be given its props. I’m also aware that Tim Tebow has a sister with a disability, so he probably knows the ins and outs of disability culture more than your average TAB person. I am not here to throw Tim Tebow or Night to Shine under the bus, or suggest that we dismantle and discontinue events like it.

But I have found that sometimes it’s best to question events like Night to Shine – namely, what we’re doing and why we’re doing it. That doesn’t only apply to things affecting people with disabilities, by the way. In our current culture, I’ve found it’s beneficial to question everything, even and especially what you think you know. I personally can’t help it. I’m a nerd. I’m a brainiac. I’m a Ravenclaw (well, on most house quizzes). I’m a scholar. It’s what I do.

But even if none of that were true…let’s question.

It bears repeating: I am not here to denounce Night to Shine. But some elements of it, and events, places, etc. like it (Special Olympics, amusement and water parks specifically for “special needs families,” special ceremonies, special education), bother me and always will. I can’t fully celebrate Night to Shine and things like it; it goes against my conscience. Why? Well, let’s break it down.

-Night to Shine is, first and foremost, a segregated event. No, we don’t use that word, but that’s what it is. Unless you have a disability, you cannot come to this prom as a guest and be honored. You cannot dance, partake of the food, or have your picture taken in a photo booth.

Now of course, temporarily able-bodied people can and do come to this prom, but as volunteers. They are not the honorees; they are not who Night to Shine is for. They are there to supplement the experience – make it more enjoyable yes, but also, make sure nothing goes wrong (we’ll get to that). You will not see a TAB volunteer crowned king or queen. You will not see a volunteer being cheered on the red carpet. That is for “people with special needs” only. The event is segregated, end of discussion.

-Attendees with disabilities are cheered on a literal red carpet, just for showing up. Now again, there is nothing wrong with this in theory. Everybody needs to know they matter, that they rock, that they are God’s chosen prince or princess. The spirit behind this is fine. But I personally would feel awkward if a whole crowd of people started cheering for me just for getting out of a limo and walking into a building. Showing up at prom is not an achievement. It is a rite of passage and a privilege as a person, but it is not worthy of some of Night to Shine’s display. I mean, for crying out loud, the military shows up to this thing and salutes attendees. That’s fine if they want to do it, but I have to say – what for? Did the military show up at your prom (unless you were already in class with a guy or girl who came in dress uniform – and who was then celebrated because he or she was going to go fight, perhaps die, for his or her country)? Did people cheer you just for coming? Or, like so many of us, did you just go with your date and enjoy being with them and the people you loved? Did you slip in stag, a wallflower, and just hope the night ended early?

It’s more than that, though. Once again, I have to point out that we as people have a serious issue with talking out of both sides of our mouths when it comes to PWDs. One minute, we tell them they’re special, they’re loved, they rock, they’re the best people ever. For one night. And then the next day, we tell them, “You still haven’t met your IEP goal. You won’t do what other kids do. You’ll graduate from high school, but you’ll still come back to life skills class until you’re 22. After that, good luck. You’re special, yes, but only in the sense that your needs can’t be met the way everyone else’s can. You’re loved, but mostly (sometimes only) by family members and professionals.” Why are we doing that? Which brings me to…

-Night to Shine is just that – one night. After that, the clock strikes midnight. Cinderella goes back to scrubbing floors (or stacking boxes, bagging groceries, or filling bins for no pay – or waiting for the school, Voc. Rehab, whoever to help them). It’s a “high” that PWDs and their families look forward to every year – but what happens afterward? As with Special Olympics, many guests go back to being invisible. And somehow, society is okay with that. We’d never say it directly or out loud, but we feel, “We gave them their night to shine, so they should be happy and content.” Wrong! Oh, so wrong.

Night to Shine is valuable, just as prom is valuable. But what happened for you after prom? Did you graduate and then go right back to the same school the next year? Did you keep your first high school job for years on end – which, by the way, you got paid for? Did you continue living in your parents’ home, or do so without any plans to leave (because as we all know, the economy has put that particular milestone on hold for many of us). No. Things changed.

What changes for PWDs after Night to Shine, particularly our young people? Too often, the answer is “nothing.”

-Night to Shine is not a rite of passage. As noted, it is fundamentally different from a “real” prom. For many families, it is the only alternative to the real prom, or any real event where a guy or girl might be treated like a truly special person, allowed to dress up, dance, feel important, whatever. Some schools still do not allow PWDs to attend prom, or they hold a “special needs prom” of their own in a separate room or location.

Now of course, some students and adults with disabilities might not mind that. After all, it is still their time to shine. But what about those who do? What about those who want to go to the real prom but are afraid to because they won’t be accepted? What are we doing to make them feel worthy to shine?

I’ll speak from personal experience here. I didn’t go to prom. Could I have gone stag? Yes, and a lot of girls and guys from my class did. But I knew if I did, I might not be accepted. I would be treated as, “Well, of course she’s alone. She’s not disabled enough for the special prom, but she really doesn’t belong here.”

I wanted a prom date. I wanted to be asked – and not because the guy felt sorry for me or wanted to do a good deed. All through high school, I wanted somebody to take me to prom, or to the Christmas dance, or out on a date, because he thought I was smart, or pretty, or cool. It didn’t happen. And I stayed home that night, rather than deal with the hurt, because I knew the reason. People might ask a girl with a disability to prom, but they would never ask a smart girl with a disability, or a Christian girl with a disability, or a smart Christian girl. One of those things was fine. All three together, along with any of my other idiosyncracies, would have just been too much.

Am I being too harsh on high school guys? Maybe. I don’t mean to be. But that is the place I came from. I didn’t get the rite of passage. And to me, a “special needs prom” surrounded by students with severe disabilities, teachers, and aide workers, would never make up for it. I thought about attending Night to Shine because I still wanted my moment. I really did. But I know it would be artificial, at least for me. I want to wait for the real thing, whatever that looks like.

-At Night to Shine, everyone gets crowned king or queen. Because of how the event is set up, this is not necessarily an issue – certainly not the biggest issue. But it does imply the “everybody gets a trophy” mentality. It also implies to PWDs, “This is the only way you’ll ever get this honor.” Whether or not the PWD makes that connection, I don’t like the implications.

-Volunteers are asked to help in case something goes wrong. Now, of course, that’s not the only reason they are there. Night to Shine volunteers do a lot of things other prom chaperones do. They pin/fix corsages and cumberbunds. They serve foods and drinks. They point people to the restrooms. At Night to Shine, all guests also get a “buddy,” so if somebody needs help eating, or navigating the dance floor, or dealing with sensory overload, they have a trusted person there. That’s absolutely fine.

What I have an issue with is again, not the construct itself, but how it doesn’t match up with how real proms or similar events are handled. For instance, guests are taken to a “sensory room” to cool down if, say, they get upset because they aren’t able to dance with who they want to. (Fine, if the person is really overstimulated or screams or gets violent, but how often does that really happen? Night to Shine implies it happens constantly). Volunteers are coached on what to do or say in negative situations (again, a person gets upset, something doesn’t go exactly as planned). Many guests, including full grown adults, attend this prom with parents or caregivers, who are invited to use a “respite room” to relax, talk – and essentially get away from their loved ones, who are so loved, but oh, so burdensome. (And let’s not forget, after Night to Shine, the stress, the burden, the whatever, it all comes right back)!

I mean, think about it. Just think about it for a minute. Why is this event set up this way? Again, I understand having “buddies” for the people who really need them. But one, the buddies are told they must never, ever, for any reason, leave their guests. That gives the guests no real opportunity to socialize without “supervision.” At least during our recent event, a lot of the buddies were also high school kids; I wonder how many of them came to have a good time, but also do a good deed? I wonder how many PWDs wondered, “If this person didn’t have to help me, would he or she be here?” I would’ve wondered.

Oh, and also: the guests are not allowed to refer to anyone as a date, boyfriend, or girlfriend. If they do, they are corrected by a buddy or volunteer, and volunteers are encouraged to send extremely clear “just friends” signals. Now again, I get that for PWDs who may not have grasped social boundaries. But is that their fault? Is it really so difficult to teach boundaries to every PWD, to the point that that person can’t even go to freaking *prom* with a friend, boyfriend, or girlfriend – and know the difference?

Think about it. Was this your prom? Were you corrected for calling your date, your date? If you got frustrated because the guy or girl you wanted to be with didn’t reciprocate, were you escorted out to a separate room? Were your parents there in any capacity – and if yes, was it to make sure you were “okay” or that you “behaved yourself?” Were you followed around by one specific volunteer all night? Were teachers, volunteers, and chaperones coached because after all, you know how fragile these students are. It might get ugly?

No! Your prom had girls crying in the girls’ room and boys smoking in the boys’ room – and we all survived. If somebody did something inappropriate, they were escorted *off the premises* by the appropriate personnel – the police, if it was serious enough. But nobody felt they had to shepherd people into a sensory room just for being upset, or talking too loud, or whatever the excuse happened to be. Volunteers were there to help, but they didn’t hover. And for good golly sakes – this night was fun because we got a break from our parents! If our parents were there, I guarantee you they were not in a “respite room.” I guarantee they weren’t talking about how challenging it can sometimes be to raise us – okay, maybe a little bit. But they probably also bragged because Gracie got into Yale. Mike’s attending Notre Dame on a football scholarship. Pena got accepted into the Navy, and she ships out graduation night. Tommy’s going to join his dad at the family mechanic shop, and maybe later he’ll start his own business. Nobody was talking about life skills classes, or group home placements, or hoping and praying that Voc. Rehab would come through with a minimum wage job.

I want everybody, disability or not, to have their nights to shine – and days, and midnights, and afternoons, as many as can be given for as long as they’re on earth. But not like this. Not in a way that continues to draw the line between “us” and “them.” And if you say, “Well, Chick, my son/daughter needs a prom of their own because it’s the only way”–what does that tell you? Shining shouldn’t take the red carpet, just for existing. It shouldn’t take military salutes and special buddies and respite rooms. People should shine because they exist yes, but because they are accepted. Because they have achieved. Because their lives, and the love given to them, are real. 24-7. Every day.

It’s Valentine’s Day, folks. Today is the day to tell your loved ones they shine. But every day afterward is a chance to prove it. How? Through the chance to live real lives. Through support and encouragement. Through real hope. Through unconditional acceptance, no matter what their brains or bodies can or cannot do well.

If we do that, we will all shine. And at night, when we look up at the stars, we’ll feel good about what we – tiny specks in the galaxy though we are – did that day.

Beyond the Mouth: Talking is Not (Necessarily) Communicating

Hello and happy February, readers!

We’ve spent a lot of time here at The Nest discussing how important communication is, especially for people with disabilities. Many times, PWDs don’t have reliable ways to communicate, or it’s assumed they can’t communicate, so they aren’t given any means. There are methods of communication that some PWDs have, but they may be limited. For instance, a picture board may only communicate certain messages. A picture of a drinking glass is often assumed to mean, “I want water.” Sometimes that’s true, but what happens when what the person really wants is a soda or a Sonic Fizz? Right.

There is inherent danger in not having means to communicate, especially when you also have a disability that precludes or hampers communication. When you can’t talk, people ignore you. They assume you’re stupid, or have no preferences, or that your needs are extremely basic (you drink water whether you want to or not. You get plopped in front of a TV set when what you really want is to play the game everyone else is playing. You get the idea).

But as a friend recently reminded me, talking is not the only way of communicating. And talking is not always communicating. That’s what we’re here to discuss today.

This friend, R, has a son, H, with disabilities. One of his disabilities is a disorder called AHC, which causes major seizures and “episodes” where H cannot talk, move his body, or otherwise engage. H also has autism. Recently, a nurse erroneously told his mother that H’s behavior had nothing to do with autism because well, he could talk. Apparently, as long as a person with autism can talk, their behavior and feelings should never be chalked up to autism; they should be labeled as “being bratty” or “being uncooperative/noncompliant.”

Outside of the fact that it’s obviously time to get a new nurse, there’s a big fallacy in that line of thinking. Listen closely and write or type this down: What you say is not always the best indicator of what you need, think, or feel. It is a big indicator, which is why I still push so hard for PWDs to have ways to speak even without their mouths. But sometimes words fail us. Sometimes our minds and bodies don’t let us use words, or our emotions run too high for them. Just because an autistic person, or any other person, is not talking in a prescribed or “normal” way, does not mean he or she isn’t communicating. Nor does it mean the people around them shouldn’t listen.

So, if talking is not always communicating, what are some other things to watch for? Some of these may be familiar to you, and some may not. Here are a few:

-Body language. This comes up a lot in public speaking classes, career counseling and job training, and just living life. What your mouth says can completely contradict what your body says. That’s why it’s advised not to sit in a job interview with crossed arms or crossed legs. You’re communicating that your body is “closed” and that perhaps your brain is “closed” to what the other person is saying. This is also why public speakers are taught when and how to gesture during speeches. Gesturing too much may make some audiences uncomfortable, but if you don’t gesture and just stand behind the podium all the time, you may send the message that you’re unapproachable.

Body language can also communicate a wealth of things for PWDs, those with and without traditional voices. Let’s say you have an autistic loved one like my friend R’s son H. Watch him or her during a therapy or counseling session. Even if he or she is “complying,” do you see a blank facial expression? Crossed arms or legs? Unusually stiff or lax posture? Your loved one may be saying, “I don’t want to do this now. I’m tired/hungry/grumpy/frustrated. I want to move on to something else.” Listen.

The same is true for positive emotions. Sometimes people with disabilities get asked if they’re sad or mad when they’re not, because they may not have facial control. Look past the expression. Is this person tapping his fingers to music in the car? Is her posture relaxed while she’s reading? Is she clapping or pumping a fist at a sports arena? That’s happiness, contentedness, or enthusiasm.

-Sounds. Oh, this is a biggie, especially for people with autism, speech disabilities/delays, or intellectual/cognitive disabilities. Oftentimes, these particular people can make sounds, but they are shut down. A scream is assumed to be noncompliance or anger; grunting or syllables are shut down with phrases like, “Now, Ali, use your words.”

Let’s get one thing clear. Ali, or whoever, may have words. He may be trying to use them. But just because Ali doesn’t speak “your way,” or because a sound makes you uncomfortable or confused, doesn’t mean he shouldn’t use it. Would you tell a person who speaks fluent and beautiful Mandarin Chinese to speak English, or that their words are too nasally/monosyllabic/confusing/whatever? No, didn’t think so.

Example: Toula has an intellectual disability that causes speech delay. She has a vocabulary, but it’s not as big or advanced as others’. So when Toula needs something, she often finds it easier to use the words or gestures she’s comfortable with. She might point to a toy and say, “Want, please.” She might pull away or grunt to say, “Please don’t touch me,” or make a pleased whistle or click to say, “Yes, I’m happy to see you. Please give me a hug.”

Now, can Toula’s vocabulary be increased? Maybe, maybe not. But no matter what – I don’t care if she’s 5, 15, or 37 – listen. Use of words or lack of use of words should not be a reason to discipline a PWD, stop listening to them, or chide them. Yes, it can take time to learn what a person with a disability is trying to say with all those sounds. But if you take the time, you will find life is much easier and more pleasant for both of you.

-Gestures. This goes along with sounds, so I’m not going to spend a lot of time on it, except to say, gestures are in fact legit forms of language. We think we know that, but there are still some people out there who act otherwise. For instance, some “experts” who work with Deaf people discourage sign language because “it’s just gestures,” or because they think the only way Deaf people can function in “the real world” is to speak. Baloney. Sign language is a beautiful, legitimate language that levels the playing field for deaf and mute populations, and helps them get stuff done.

-Boards/devices. Again, technology can open up the world of PWDs in ways you would not believe. However, make sure boards, devices, or whatever other assistance your loved one is using, is as comprehensive as possible. See the TV show Speechless for a good example. J.J. has slang and yes, even some profanity on his communication board because well, that’s how teens his age speak. A PWD should not “sound” like a robot or a person who only knows how to use 3-4 specific phrases.

-Aggressiveness/destruction. Before we go any further – no, I don’t condone this for its own sake. And yes, PWDs should be shown other ways to communicate, in a natural and positive fashion. But let’s get real here – it happens. If your normally cooperative and sweet kid with Down Syndrome or CP or whatever, suddenly throws a toy, tune in. Is he upset because he just can’t push that tiny button? Has she had it with Aunt Mildred getting all up in her space and hugging her to death? Worry about the “manners” side of it later. In the moment, do what you can to diffuse the situation and say something like, “I see you’re upset. Let’s go cool down/how can I help?”

-Crying/meltdowns/shutting down. This is another big one, especially among autistic people but other PWDs, too. So often, PWDs are not allowed to be angry. We’re assumed to be throwing tantrums or fits when we express ourselves in anger, even if we’re full-grown adults. I speak from experience: I have been legitimately ticked off at someone or something before and gotten the response, “Good Lord, would you calm down? Come back from the deep end,” or worse, “You’re just hormonal.”

No. No, no, good Lord and for the love of St. Peter – please stop saying this stuff! It makes me, and people like me, feel totally undervalued. It makes us feel like we’re wrong to express ourselves or have certain emotions, that no one is listening, and that people just don’t care. As a woman in particular, let me plead with you: whether she has a disability or not, never tell a woman she’s “just hormonal.” It’s completely insensitive, even if it’s true at the time, and it doesn’t address what she’s trying to tell you.

Instead:

-Know the difference between a tantrum and a meltdown or a shut down. A person who is melting or shutting down is NOT seeking attention or control, the way a tantruming child would. They have reached a place where they cannot otherwise communicate. They are asking you for help.

-Let it happen. If the person can’t accept help right then, you may need to walk away. Give the person avenues to speak openly and honestly later. Make it clear they are not “in trouble” or “being noncompliant.”

-Empathize. Let’s say your female teenager with CP actually is having a bad day and you suspect it’s hormones because you know her. Fine, but don’t brush it off. You can ask, “Honey, what time of the month is it?” You can ask, “Do you need to talk? Is there anything I can do?”

-Listen. When the person does talk to or communicate with you, please don’t say things like, “That’s not true/that’s ridiculous,” even if you think it is. Why? Because that shuts communication down, and makes the person feel like you think he or she is a liar. Don’t say things like, “Oh, this again?” (Because really, if you’ve heard it a hundred times and have not been able to help, that’s not the person’s fault. That’s the fault of something in the environment that just is not working). And unless the person indicates advice is welcome, don’t give it right away. Just shut your mouth and listen. At some point, you might say, “Do you want me to tell you what I think/here’s my opinion” or whatever. But – and this is a reminder to everybody out there, disability or not – sometimes you just need to shut your mouth and listen.

-Offer support. Sometimes there will not be an immediate or easy solution to what your loved one wants or needs. Instead of saying something like, “I don’t know what to tell you/I’m tired of this/what do you want from me,” try a more supportive statement. Say something like, “I can’t solve this now, but I promise I, and we, will keep trying.” Offer something else; say, “What can I do to make you feel better about this right now?” Offer affirmations. For example, there are times when I don’t feel like anything in my situation will ever change. There are times I just don’t see a future for myself. In those times, it’s great to hear, “You do have a future. You’re a great person with many talents who was put here for a reason. I love you. I value you.” Even if the solution isn’t present, those affirmations help, even if only a little bit.

Talking is important, and if you can talk, I encourage you to do it, to make yourself heard, understood, and responded to. But remember, there are myriad other ways to communicate. Look for people using them in your life. When you find them, respond, and encourage all forms of communication.