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.


-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.


If We Don’t Talk About it, Who Will?

Hello readers,

You know how sometimes you drag your feet on writing about a topic, because you know it needs to be discussed but you hate even touching it? Okay, you might not know that feeling unless you write/blog, but I do. It’s where I am right now. I don’t want to talk about this particular disability issue. But if I don’t – if we don’t – who’s going to? Maybe nobody. So here we go.

A longtime reader named Kitty wrote in with the idea for today’s post. It centers on a recent NPR news story covering the sexual abuse of PWDs, especially those with cognitive disabilities. One such woman, “Pauline,” was interviewed for the story. (I think that’s her real name, but they might have changed it for safety/dignity reasons). Pauline expressed that although she was hesitant at first, she wanted to tell her story to help other women. My reader, Kitty, pointed out that in the current climate, Pauline’s story is one we must hear. In an era of #metoo and constant breaking sex scandals, we must be aware of the sexual abuse committed toward persons with disabilities. More important, we must stand ready to do something about it.

NPR spearheaded a yearlong investigation of sexual abuse toward PWDs before airing Pauline’s story, and the story of this “abuse epidemic,” on All Things Considered. They found that persons with disabilities, both women and men, are seven times more likely to be sexually assaulted and/or abused than people without disabilities. Those with intellectual disabilities are at particular “heightened risk” every day, at many points of their days.

Nancy Thaler, a Pennsylvanian who runs developmental disability programs for PA, said in the report, “If this were any other population…we would be irate and it would be the No. 1 health crisis in the country” (italics mine). Indeed, the vast majority of sex crimes against PWDs go “unreported, unprosecuted, and unpunished,” according to All Things Considered. Leigh Ann Davis, who runs The Arc, found this out recently. The Arc is an advocacy organization for persons with intellectual disabilities and their families/support networks. At a conference, Davis asked anyone who had experienced sexual assault or harassment to raise their hands. All 30 women in the audience raised their hands.

Davis then asked if anyone in the room knew a person with an intellectual disability who had been sexually harassed or assaulted. Two hands went up. Two.

NPR’s yearlong investigation found that people with intellectual and/or developmental disabilities are far more likely to be assaulted by someone they know than a TAB rape victim is. That’s crucial, because even among TAB rape victims, the perpetrator is usually someone they know. The key differences are that one, a temporarily able-bodied person can report the crime; a PWD sometimes can’t. And even if the PWD can report it, there is no guarantee he or she will be believed.

It turns my stomach, guys. It makes me want to hit something, especially when one considers just a few of the reasons for this travesty:

-No communication. As noted, a lot of PWDs who’ve been assaulted are vulnerable because they can’t communicate or have no reliable means to do so. Perpetrators naturally figure these people will never report it, so they go on and do their sick little deeds without reprisal. A person with a disability could conceivably go years or decades without the means to report such a crime. I’m not a gambling woman, but I’m willing to bet you know such a person, or will at some point.

-Broad daylight. Remember, PWDs are vulnerable to assault at many points, if not all, in their days. Because their attackers feel secure, they don’t wait for nightfall. They don’t need to wait until there are no witnesses, although in most cases, that’s already a given. They assault in broad daylight, usually after winning their victims’ trust, which brings me to…

-Trusted attackers/no belief. In many, if not all cases, the attacker is a person the PWD already knows and has put her faith in. This can be a family member, a guardian, a group home worker, a medical professional, a teacher or aide…you name it. NPR found that at times, the attacker is actually another person with a disability who has access to the victim or even lives with her, such as in a group home setting.

So think about this. The person with a disability has been asked – often compelled – to put their trust in one of these people because “You need help/to be taken care of.” The attacker takes advantage of the situation by pretending to be a friend, adviser, what have you. Especially for people with intellectual or cognitive issues, the attacker has an easy inroad (we’ll get to exactly why that is in a minute). The attacker does what they came to do, secure in the knowledge that the crime won’t be reported.

But let’s say it is reported. Let’s say that, like Pauline and so many others, the PWD has the means to communicate. Many times, she’s not believed. The people she speaks to assume, “You’re imagining things” or even worse, “You’re making that up.” Remember how much we’ve talked about PWDs being accused of manipulation? Well, this is a part of the backlash that comes from that. As in, “Well, Laura is naturally manipulative. She must’ve made it up because she didn’t want to do X and Y.” Or, “Well, you know Jeff has a history of aggression. He probably provoked Miss Mary, she defended herself, and now he says she abused him. Whatever.”

What a crock. I mean, really. What a load of caca-doody. What does it say about us as a society – forget society, as human beings – that we would ever make these assumptions? And really, we’re talking out of both sides of our mouths. We claim PWDs, especially those with intellectual disabilities, are the most vulnerable people in society, deserving of protection. And yet when they ask for protection, when they report something…ugh. I need to move on.

-Unquestioning obedience. The NPR points out, and rightly so, that PWDs often don’t report these crimes because they have been conditioned to obey. Especially for a person with an intellectual disability, compliance is king. Any deviation from what others want from that person, is labeled “noncompliance.” Any disobedience is quashed. When advocates point out the flaw in this, they usually get scoffing and questions like, “What, you don’t think children with disabilities should be taught to obey?” They sometimes get rationales like, “Well, if Gloria is not expected to obey, she’ll never do what she’s supposed to.”

Again, I’m smelling some serious caca-doody. First off, PWDs are not perpetual children, and there is a huge difference between teaching a child to obey, vs. teaching an adult to speak up for themselves. Even with our children, we let them know that it’s okay to disobey/say no/run away if somebody wants them to do something they shouldn’t. Think about it – what did your mother tell you? “If a stranger tries to get you in their car, scream or run away. If someone tries to touch you in a way you don’t like, get away and tell somebody. No one is allowed to touch your private areas, ever, except you, your parents, or a doctor. And if your parents or a doctor is touching you, it needs to be for a medical reason or because you are hurt.”

But for some reason, we don’t tell PWDs any of this. Well, back up, I take that back. i know the reasons. We assume PWDs are asexual, so we don’t tell them that they even have sexual organs, let alone what to do with them or who should be touching them. Or, we assume PWDs have no sexual inhibition, so we forcibly sterilize them or figure that if assault occurs, it was provoked or asked for in some way.

More disturbing, the TAB world is often so focused on getting persons with disabilities to conform to their standards – to obey – that they don’t think beyond basic obedience. So think about it. Anna has an intellectual disability, and throughout her life, it’s been assumed she can’t learn or obey without extreme assistance. So when somebody says to Anna, “Go over here,” she does it. “Eat this now.” “You can’t have that.” “Put your blue shoes on.” “Go to the quiet room.”

So is it any wonder that one day, Anna grows up, and some pervert says to her, “It’s okay, Anna. This is what friends do. You do want to be my friend, don’t you? I’ll even let you be my girlfriend. Come on, show me. Take your clothes off. No, it’s okay – I can touch you there. Friends let friends touch.”

And then, too often, Anna hears this afterward:

“Don’t tell anybody, okay? I won’t be your friend if you tell, and if you tell, I’ll say you wanted it. You’ll get in big trouble.”

It’s sickening, and that’s all I’ve got to say about it.

What Can We Do?

First and foremost, speak up. With your mouth, on a blog, I don’t care. Yes, it’s a hard subject, but if we don’t talk about it, who will? After that:

-Educate PWDs and their families. If you’ve got a PWD in your life, he or she needs to know this stuff. No need to get graphic, but spell it out. Your loved one is a sexual being and has the right to say who can and cannot be in control of her body. Teach the person the difference between “good touching” and “bad touching.” Tell him or her what a person might say to make assault feel okay. Give the person options to get away/get out.

-Listen and believe. If a PWD says they’ve been assaulted or abused, listen and believe. Period. I highly doubt any person who has really been abused, disability or not, would “cry wolf” about this.

-Report it yourself. If you know something, say something. Period. People who assault PWDs will go unpunished only as long as no one knows what they’re doing.

-Tighten security. Parents, guardians, loved ones, staff, teachers – I’m talking to you. When was the last time you did a thorough background check on somebody working with PWDs? You would be shocked at the number of Joe and Jane Schmoes who walk in off the street and get jobs working with this population. Jobs with high turnover, like aides, are especially vulnerable. Do your homework!

A Few More Tips:

-NEVER let a PWD be assisted/cared for in a personal way by a caregiver of the opposite sex. Yes, even if it’s a family member. If your daughter has a sleepover at Grandma and Grandpa’s, Grandpa shouldn’t be the one giving her a bubble bath. Yeah, I know how that sounds. I don’t like it, either. But it is the world we live in.

-NEVER compel or otherwise expect a PWD to be in a secured, locked, or otherwise private location with a member of the opposite sex.

-For group home staffers/similar professionals: Sometimes PWDs will assault each other. To prevent this, watch closely for signs of aggression/boundary pushing. I hate to even suggest this, since PWDs, like anyone else, are going to want to go out on unsupervised dates and they should be allowed to do so when at all possible. But at times, in certain situations and for certain people, supervision is needed. You may have to step up your game.

I’m going to leave this here; if you have questions, comments, or other tips, please leave them. Remember, if you don’t speak, who will? Speak up, and give PWDs a safe way to do so, too.

#speakup #listen #believe #report


Part of the Community, Not “Community Service”

Hello readers,

Community service is on my mind today. My pastor just started a sermon series on spiritual gifts and how to use them, which I am excited about. He sent the church the link to a spiritual gifts inventory, so now I know my top three gifts and am looking forward to using them. In case you’re curious, those gifts are mercy, discernment, and knowledge. If you’re a Bible reader or just want to know more, check out 1 Corinthians 12, Romans 12, and 1 Peter 4 for what those words/gifts mean in a Christian context.

Community service, using your gifts, loving your neighbor – those are all wonderful things. As to the loving your neighbor thing, the Bible even commands it, so even if I didn’t want to, I couldn’t get away with *not* doing it. (And trust me, I’ve got some “neighbors” I don’t like – you know what I’m talking about. The kind of people who drive you nuts with their apocalyptic theories, swear you’re crazy because you prefer cats over dogs, and leave their Christmas lights up until March 31). But there are some hazards to this community/spiritual service thing, and I bet you know what one such hazard is.

Yup, you’re right. I’m talking about when temporarily able-bodied people use people with disabilities as a way to “punch their cards,” so to speak. This is not the same thing as the caregiver or therapist who thinks they’re a hero for doing their job. It’s not the same as inspiration porn. However, it’s in the same neighborhood.

This phenomenon occurs when TAB people see people with disabilities primarily as “other,” or a marginalized group. They may or may not feel pity for PWDs, but they tend to see them as innocent, wounded, and in need of help or care, more than as actual people. When this happens, you might hear a TAB person say stuff like, “Oh, this is a fundraiser for The Disabled. We need to help and be compassionate toward The Disabled. My son Ben has a Friend With Special Needs, and I am so proud of Ben for extending the hand of friendship.”

Now, is it good for Ben to extend the hand of friendship? Yes. Is it good that TAB people want to help people with disabilities? Yes – mostly. The problem comes in when the person with the disability is treated like a project. I have read true stories about parents whose kids come over to play with classmates who have disabilities – as part of a community service or “kindness” project. Parents once ran a story from a mom who was flabbergasted when a fellow parent asked if her son could spend time with her son, who has a disability. Why? Not just for fun, not as a playdate…but because the TAB kid was about to undergo his bar mitzvah, and spending time with a PWD would be seen as a mitzvah, or good deed. Basically, the kid and his mom were looking for class credit.

It doesn’t even have to be that blatant, although mostly it is and it drives me up the wall. (*Healing breath* Love thy neighbor, love thy neighbor…) Sometimes this phenomenon happens because people really do want to help PWDs be part of the community, but their messages are mixed. A prime example is Night to Shine, a prom for “people with special needs” put on by the Tim Tebow Foundation. Does the foundation have good intentions? Yes, but they are still holding a segregated prom and asking for donations/assistance in the name of charity. (We’ll be talking more about this next month, especially since my own church is going to be an event location).

I cannot stress this enough: Spending time with, or even acting friendly toward, a PWD should not qualify as community service. Doing so does not make you a saint or a hero, and it does not mean you are using God-given gifts to the best of your ability. In fact, the idea that it does, smacks of ableism. Why? Because it keeps the line between “disabled” and “non-disabled” separate. It reinforces the idea that there is an “us” and “them.” In this case, PWDs are the “them.” They are people to be pitied, people who won’t have friends or experiences unless someone who is able (unlike “them”) steps up and helps out. This is not true, and the people who believe it is true should not get credit for it, no matter how benevolent their intentions.

I hear you. You might say, “Chick, you don’t get it. My loved one with a disability needs a night to shine and a prom of their own. I don’t care if my kid with a disability gets played with in the name of community service, just so long as he has a friend. You’re just saying this because you’re mildly disabled and offended.” Well, I understand you, but I disagree. First off, if you think I’m only saying this because I’m “mildly” affected, that’s pretty much the same as saying, “You’re not disabled enough to know what you’re talking about.” Trust me, I am. Mild, moderate, severe…I know people with all degrees of disabilities, and their loved ones, who would prefer not to be treated as community service credit.

As to what your loved one needs and how you obtain it – okay, I get it. But I ask you to think about this: if the only way your loved one is getting what they need, is through segregated interaction or someone else’s need to serve the community – is that fair to your loved one? What message are you sending? Because the message I often hear in situations like this is, “Unless someone else is serving/being charitable, they have no reason or desire to be around you.” That’s a dangerous message hiding behind noble intentions, folks. It’s sneakier than a snake in the grass, and it will come back to bite you.

So what should we do instead? Should we throw all charities and programs/events aimed at PWDs under the bus? No, but I think we should examine our intentions, the way we talk about what we’re doing, and the options we’re presenting. For instance:

-Don’t couch an event as for The Disabled. In fact, don’t even say “The Disabled.” That’s like saying “the Jews” or “the Muslims,” and lumping a whole population into one group. Now, sometimes that can be used as more a collective noun (“The Jews in our inter-faith organization believe this, the Christians believe that, and the Muslims believe that.”) But I think we can all sense it when somebody says The Disabled. They’re painting that group as the group of poor wounded lambs, the one you don’t want to be in. Stop it.

-If you are a teacher, pastor, imam, rabbi…DO NOT give credit for “being friends” with a PWD. Don’t couch it as a good deed, mitzvah, or activity that people should do to appease God, exercise their gifts of mercy, or otherwise help “those people over there.” You probably don’t mean to do that, but if you’re doing it, rethink why. Is it because you don’t have many PWDs in your classroom, congregation, or whatever? Is it because you don’t know how to integrate? Is it because you’ve never spent adequate time with a PWD – as a person and a friend? Then maybe this is the year to change that.

-If your congregation has a disability ministry, don’t paint it as especially heroic, or “messy” or “untidy.” Even PWDs paint these ministries that way. Joni Eareckson-Tada, who herself lives with quadriplegia, has called disability ministries messy and untidy. Does she mean it in a bad way? No; I think what she means is, “People don’t want to get involved in this ministry because they think it’s hard or messy or whatever.” But guess what? When you use those words, or when you dump praise on TAB people just for “ministering to” people with disabilities, you make us all look pathetic. Please, please don’t do it. (More on this little pitfall in a future post).

-Erase the line. Night to Shine, Best Buddies, college programs specifically for “special needs students”…they are well-intentioned. But too often, they reinforce the mentality “us” and “them.” Erase that line. If your college has such a program, go out of your way to mix up the groups. Get to know those students as real friends, and invite them out to go clubbing or to the movies (what? You think a lady with a disability doesn’t want a nice guy to buy her a Shirley Temple at the bar? Okay, I’m a teetotaler, but Baptist habits die hard). 🙂 If your rec center, church, or organization is having Night to Shine, that’s great. But while you’re at it, make clear that students with disabilities at your school are welcome at your prom (WITHOUT expecting a newspaper write-up for inviting them).

-Invite and encourage PWDs to serve. PWDs have gifts and skills, too – skills that need to be used. We are not perpetually needy, but we need to feel needed. Help a person with a disability in your church take a gifts inventory. Ask them what service projects interest them and then say, “Great! Can I pick you up at X time, Y location? We could sure use your help.”

Serving people with disabilities is part of what communities should do, but it should not be a charitable service. Instead, people with disabilities should be allowed to be part of the community they serve, first and foremost. Who knows? Maybe you’ll find you need to be served more than they do – and some day, they may need to be served, too. It’s all about an equal playing field and paying it forward to each other, so let’s do it.


Let Us Seize the Day

Happy New Year, readers!

I hope everyone had a joyous holiday season and, in the case of the Catholic and Orthodox Churches, looks forward to Epiphany and Orthodox Christmas with great anticipation. (I do, even as a Protestant, since Orthodox Christmas happens to be my birthday).

The new year is exciting, isn’t it? We don’t know what will come, but we hope whatever it is will be good. A lot of us make resolutions, although many of these end up broken sooner rather than later. I used to make New Year’s goals, but those never seemed to work out, either. Still, the New Year is a great time to seize the day, get started on some new things, and anticipate the next phase of life. Yes, even if, and perhaps especially when, you have a disability.

Many people with disabilities, myself included, are curious and confused about how to do this. We’ve talked about some of the reasons before, such as, PWDs have goals placed on them. They don’t make their own goals and if they try, their efforts are pooh-poohed. They’re told they can’t change and never will, or that they can’t change their environment or trajectory, so be content (which usually is a nicer way to say shut up). Sometimes PWDs don’t know what they want a new day or new year to look like. Speaking from experience, sometimes PWDs only know they want things to be different. But since they cannot express what that means to them, or do not yet know, they’re accused of being dissatisfied and negative.

I say that’s a bunch of crap, but you guys knew that already. So the question is, how does a person with a disability seize the day? I’m still learning, but here are a few nuggets I’m going to do my best to live by in 2018.

-Forget the year. The year as a whole is huge. It’s 365 whole days, 52 weeks, 525,600 minutes (thank you, Rent). And in that time, we all, disability or not, will set objectives for ourselves. Some will work out beautifully and some will not. Some we’ll get a roaring start on, and some we have to wait to begin, so by the time April or June or October rolls around, we might just say “forget it.”

People with disabilities face the same pitfalls, but from experience, they face others, too. One of the big ones, again, is that the people in their lives place goals on them. Not just goals, but REALLY BIG goals. As in, “This year, you will learn to do X, Y, and Z, and you will do it all by April.” As in, “By the end of the school year, Ronnie will read at an appropriate grade level” – even though for a variety of reasons, he’s only halfway there. (And halfway there is not a bad thing)! Because of this mindset, and sometimes because of their own drives, PWDs also set really big goals for themselves (ahem, yours truly). We say things like, “This year I’m gonna get my dream job” or “This year, I will finally move out of my parents’ home/the group home/Section 8 housing.” And then when it doesn’t happen, we brand ourselves failures.

What is up with that? I mean, I know what’s up with that. As a driven woman, I’m as guilty as anybody. When someone tells me, “Take it one day at a time,” I’m inclined to tell them to get out of the slow lane and burn rubber or get left behind. But the truth is, we all have to take it one day at a time. I’m not speaking specifically to persons with disabilities, but I am speaking to you, your loved ones, and your caregivers. Forget that 2018 will end in, what is it now, 362 days? Tell the person who wants you to learn everything by April to shove off – even if that person is you.

Seizing the day means just that: One. Day. One single day. What can you do today, to make the day feel new and promising? Got something in mind? Okay, go do it. Reading at grade level starts with a book of your choice. Brushing your teeth starts with getting the paste on the brush.

-Ask, “What is important to me right now, today?” Of course, moving into housing of your choice is important; in a lot of cases, it’s vital. But since that may not happen today, what is important today? Maybe it’s something as simple as, “I will find something to be happy about, or a way to help out, in the house where I am now.” Over time, these little steps can become bigger ones with the help of those who love or promise to support you (and if you aren’t getting what you need, what’s important today may entail saying, “I am telling you – not asking, telling you – to do your job.”)

The same goes for smaller ambitions (I don’t want to call them goals because that connotes IEPs, IFSPs, and all those other annoying Ps). In other words, yes. It may be important to a teacher, therapist, or doctor that Gerard, who has CP, learns to tie his shoes now. Why? Because “He’s eight years old; other kids already know how.” Well, to be blunt, so what? Is tying his shoes going to help Gerard get a job someday? Is it going to help him prepare to go to sleepaway camp when he turns 10 and becomes eligible? Is it going to make him happy – not just happy that he can tie his shoes, but happy in the long run? Yes, Gerard should learn to tie his shoes, as naturally as possible. But maybe what’s important to him right now is learning to communicate beyond a picture board, or learning to operate a DVD player or stereo. That way, he can specifically say something like, “I want the red shoes, not the blue ones” or “I want to watch Home Alone, not The Lion King. Come on people, I’ve seen that a million times.” In fact, Gerard and his team might find that stuff is a lot more important than shoe-tying. Hello, they have these things called loafers now.

-Allow mistakes. This is exactly what it sounds like. I’m not going to talk a lot about this one because it’s the hardest thing in the world for me to do, and I don’t want to sound hypocritical (I’m still working on it, folks). But mistakes are not the end of the world. Setbacks teach us things we need to know. So allow them. And experts, teachers, members of the Plan team, I’m talking to you: A mistake or setback does not mean “give up.” It does not mean a PWD will “never” do something. All it means is, you now know one way that doesn’t work.

-Define yourself, not just your goals. The thing about New Year’s resolutions is, they often point out what we’re not doing that we should be doing. This isn’t always a bad thing, but it can be pretty negative. For example, when we say, “I’m going to lose weight,” we generally mean, “I feel fat.” If we say, “I’m going to de-clutter my life,” what we mean is, “I’m messy/I’m a pack rat.” When we say, “I’m going to spend more time with my kids” we mean, “I’m working too much and missing out.”

Are these things true? Sure, but I’m not sure we’re speaking to ourselves the right way. The same goes for people with disabilities, perhaps especially people with disabilities. They are defined, much of the time, by what they can’t do and/or have not done yet. Thus, they (and when I say they, I mean myself, too) learn to see themselves through a disability-exclusive lens.

I recently had this conversation with a friend I met at a Christian conference. She posted something about not letting Satan’s lies infiltrate your mind and get you down, which I basically agreed with. But I had to ask her, “E, what happens when the lies are somewhat rooted in truth? As in, okay, obviously, ‘You have CP so you’re less’ is a lie. That’s Satan talking. But ‘You have trouble finding a job because you have CP’ is not a lie. ‘You’re not doing what other women in their thirties do because you have CP’ is not a lie. What do I do then?”

Well thankfully, E did not fall back on pat answers. She actually said something I found helpful, and I think would be helpful to all PWDs, no matter their spirituality. She basically recommended defining myself outside CP. You might say, “Duh,” but this is actually a lot harder than it looks, even for people like me with mild manifestations. It’s kind of a catch-22. The milder your disability is, the more you can see and respond to what TAB peers are doing that you feel you should be doing. But the more severe it is, the more other people try to speak for, over, and around you, telling you what you are not, never will be, can’t do, won’t do. It’s enough to make a person want to jump off a freaking roof.

Defining yourself outside disability is hard. In some cases and on some days, it may be the hardest thing you ever do. But the more you do it, the truer it becomes. So seize the day with affirmations. Say to yourself, “I am a ___ and this is my day.” I am a writer. I am a bookworm. I am a lover of fantasy. I am a restaurateur. I am a son, a daughter, a cousin, a sibling, a spouse. I am a Christian, Muslim, Jew, Buddhist, Sikh. I am American. I am Chinese. I am Irish. I am Mongolian or Russian or Nigerian or Israeli. I *have* this thing, but it is not who I *am*. And because of who I am, not what I have, I can be and do what I am meant to be and do.

-Get others behind you. Just as you must define yourself, others must define you in terms of who you are, not what you have or even what you do or don’t do (you walk and talk, but don’t cut your food. Who the heck cares)? Hopefully, you already have those people in your life. If not, speak up in any way you can. Let them know what you need.

-Don’t place expectations on yourself you can’t meet. In New Years past, I always wrote that by the end of the year, I’d have a significant other. Well, I can get a subscription to eHarmony or Christian Mingle – which I have – but guess what? I don’t control that. I don’t control whether a guy puts me in the friend zone and you know what? I don’t need to. I shouldn’t have to. The same goes for getting X job by May 25, or weighing a specific 127.7 pounds, or becoming an expert horseback rider, which may take a long time if you’ve only ever been in equine therapy. (It’s great to want to make that step, by the way, but…) Rest in the fact that you can’t, don’t, and shouldn’t have to control everything, despite the fact that for some reason, “disability experts” think, “If he/she just tried harder…” Baloney. Some things happen when they’re supposed to. Some things are completely up to God, Fate, whatever. As annoying as that can be sometimes, there is freedom there. Let yourself have it.

-Know that something is possible today. Just because you’re not an expert rider now doesn’t mean, skip your lesson today. Just because you haven’t moved out of your folks’ house doesn’t mean you never will. Just because you haven’t gotten the grade you wanted in that class yet doesn’t mean it’s impossible. Something is possible today. Do whatever that something is. Is it asking the teacher for extra help? Is it asking Mom and Dad to make you a hope chest so you can fill it with household items for someday? Is it putting on that one tricky sweater you’ve avoided because despite the tag, the front and back look alike? (That was a personal obstacle when I was a kid, by the way). Then do it! And if it doesn’t turn out like you planned, so what? Tomorrow is another day! Seize it. Experience it. Enjoy it. As for goals, they’ll come when they come. But this is your day, not theirs. Take it.