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.

Advertisements

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.

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.

 

 

Christmas Quickie: Is Elsa on the Spectrum?

Hello, readers,

As Christmas approaches, my mind is on all things whimsical, and what could be more whimsical than Disney? I felt this would be an appropriate Christmas quick post, since Frozen is currently considered a Christmas film (not sure if it actually is, but whatever).

Now, we’ve already discussed the dearth of Disney princesses with disabilities, what representation would or should look like, and all that fun stuff. I’m not here to reopen that discussion, but to examine whether one princess has stronger ties to the disability community, specifically the autism community, than we first thought in 2013.

There is no definitive proof Elsa is or isn’t on the spectrum; nobody at Disney or otherwise affiliated has confirmed she is. If she’s not, or if you conclude she’s not, that’s fine. This is just a theory, and I am well aware that every fan theory has its detractors and supporters. I’m a proponent of some and think others are silly, insulting, or downright repugnant (like the one that says Belle had Stockholm Syndrome and spent the entirety of Beauty and the Beast committing bestiality, or the ones that claim sexual subliminal messages are everywhere). But if you have always wondered if Elsa is autistic, or if anybody at Disney ever confirms she is…well, I wouldn’t be too surprised.

Evidence of Elsa’s Presence on the Spectrum

Before writing this post, I wanted to investigate whether anyone else had the same thoughts I did. It turns out there are others who support this theory and have written about Elsa as a role model or character with whom to identify for autistic children. There are several pieces of evidence to suggest this, some of which come from my research and some I put together myself.

-High anxiety. Columnist Helen Tager-Flusberg of spectrumnews.org brings up this point as her first piece of evidence. Elsa consistently distances herself from other people, even her parents and little sister. This isn’t because she lacks empathy or the desire to socialize. Rather, it’s because Elsa recognizes her ice powers set her apart, and often in a negative way. She has seen them wreak destruction; in fact, the powers could have killed Anna when the girls were little, and they do again a decade or so later. Thus, Elsa internalizes, “To get close to someone is to hurt them.” As an adult, she remains extremely proper, genial, and poised (we’ll get to that in a minute). But as Anna says, Elsa shuts out the world at large.

Anxiety, even high degrees of it, doesn’t mean someone is on the spectrum. However, people who do have autism, especially women, experience this level of social anxiety all the time. They want to socialize, make friends, and have fun. They want to participate – a lot of people with autism ache to participate. But for so many reasons, they struggle to do so or have internalized that they can’t. Maybe that’s because they’ve seen the effects of meltdowns on other people. Maybe it’s because they’ve been told over and over, “You’re autistic, which is different, which is bad.” Maybe it’s because the rigid social scripts they try to use (often to please therapists, teachers, and other experts), don’t work. Whatever the reasons, anxiety, social and otherwise, characterizes Elsa’s life and the lives of people on the spectrum.

-Meltdowns/loss of control under pressure. Tager-Flusberg compares Elsa’s uncontrolled ice powers to autism-driven meltdowns. I don’t think they’re accurate representations of meltdowns for every person, but Tager-Flusberg raises a good point. When Elsa controls her ice powers, they create beautiful structures. She can use them to protect herself and others from real danger. She can use them to bring joy to others (see Arendelle’s new skating rink at the end of Frozen).

Yet often, Elsa cannot and does not exhibit this control. She has never been taught how to manage her powers, and so she fears them. Out of that fear and inner frustration, she reacts before thinking. Huge, threatening ice shards shoot from her palms, surrounding her and the people she loves. The icy structures she creates become barriers and sources of danger. When this happens, Elsa also vents her feelings with exclamations like, “I can’t control the curse! You’re making it worse! I don’t want to hurt you!” And isn’t that the heart cry of so many people with disabilities, but especially those with autism? Yes, we know our disabilities might hurt people, or inconvenience them, or cause undue stress. But like Elsa, we don’t want to hurt anyone, and when the TAB world insists otherwise, it just makes it harder for us to maintain composure. To put it more succinctly: Elsa was called a monster in her world. If you call a PWD, with autism or anything else, a monster, that is what they will become. You may not use that word, but trust me, we’ve used words that are a lot worse. The best thing we all can do for PWDs, especially those on the spectrum, is teach them how to manage what they live with so it can be used positively. And when meltdowns do happen, because they will, then we can take a cue from Anna. Just be there for the person. Understand. Offer help, and keep offering until the person can accept.

-Frequent “masking” of symptoms/hard to pin down autistic traits. This is the reason a lot of people say Elsa isn’t on the spectrum (aside from the fact that the writers didn’t come out and say so). Years of research has taught us that it’s much harder to spot autism in females than in males, because females are often better social “actors.” That is, a boy with autism might go ahead and spill every detail he knows about his special interest to anyone who’ll listen, social appropriateness be darned. (And that’s not always a bad thing). By contrast, research has shown girls usually observe their peers closely, and do what they must to fit in. They’ll imitate certain phrases and mannerisms. They’ll express interest in what their peers like, even if they have to fake it. They’ll study examples of successful social interaction without knowing they’re doing it. For example, girls with autism might internalize the way a movie character with a lot of friends behaves, or act the way a romantic heroine does to try to make boys notice them.

Elsa acts and reacts in many of the same ways, though she’s not a kid or teenager – Disney literature states she’s the oldest of the princess/queen line at 21. She fully accepts her role as Queen of Arendelle and has meticulously studied how a queen should speak, act, react, etc. Until her gloves are literally ripped off in one scene, the people of Arendelle have no clue their queen is hiding a secret, because she’s the picture of decorum. If anything, the Arendelle citizenry might have raised their eyebrows at Anna, who is classically clumsy and awkward, and whose lack of social graces are pretty obvious. Elsa though, has their respect and trust immediately, partially because she knows how to mask what’s really going on. Should she have to do that? No, just as any person with autism shouldn’t have to cover up who they are. But for Elsa, the primness and apparent standoffishness are survival mechanisms, as they are for many real life girls on the spectrum. That’s why I beg neurotypical people – never assume someone is stuck up because they’re acting “too proper.” They’re probably trying too hard to gain acceptance. Let them know they can relax.

-Specialized interests. This is one trait I looked hard for when considering Elsa as a candidate for the autism spectrum. In her film at least, it’s not there – unless you want to say she’s wholly focused on being queen and that her only outlet seems to come from ice. But tie-in literature indicates Elsa is more multifaceted than she looks.

Perhaps the best example of this comes from a picture book titled A Sister More Like Me, by Barbara Jean Hicks. In this book, we get both sisters’ points of view, as each wish for a sister with whom they have more in common. Anna points out that while she likes to run, jump, and play, Elsa prefers to read or do geometry. Anna considers school boring; Elsa thinks it’s fun and gets along well with tutors and nannies. Again, nobody ever says, “Elsa is like this because she has autism.” But Elsa’s bent toward the scholarly, her comfort level with adults, and deep interest in academia at the expense of traditional “kid activities,” suggest she may have something going on. As an adult, her intensely introverted nature lends more credence to this. No, not everyone on the spectrum is an introvert, but it’s a fairly common trait.

-Struggles to maintain friendships/relate on a friendly level. Hicks sums this up in a poignant line of her book: “[Elsa] could be an older sister, but she couldn’t be a friend.” Indeed, once her magic hurts Anna, Elsa is so convinced of her monstrosity, she isolates herself. But even after coming out of hiding, Elsa can’t relate to Anna on a friendly level. She tries, and the young women have some good moments, like their shared love of chocolate. Ultimately though, Elsa sticks to the role she knows she can play – older sister. This isn’t entirely spectrum-driven; since the sisters’ parents are dead, Elsa may feel she has to act as Anna’s de facto mother. Yet even when she should relax, she doesn’t. To go along with that…

-Rigid adherence to rules/routine/what “should be done.” This is a huge trait for a lot of people on the spectrum, and if you subscribe to the theory that Elsa is autistic, she’s no different. “Be the good girl you always have to be,” is her motto, and she doesn’t deviate. At one point, this rigidity wounds Anna, when Elsa refuses to bless her engagement to Hans. “You can’t marry a man you just met,” she says bluntly. She’s right, but her delivery and timing worsen the situation. Real life autistic people often struggle with this; the desire to be right or good can supersede “social appropriateness,” or the need to tune in to others’ feelings. However, this does not mean these people should be shunned. At its core, the desire to be a good, dare I say righteous, person is a positive thing. People on the spectrum simply need more help balancing that with social grace. Be especially aware if the person in your life is also devoutly religious or spiritual. They may engage in what Catholic writers have called “scrupulosity,” or assume God will punish them if they are not always 100% righteous.

-Deep empathy, sometimes to detriment. Taking into account the above, one might assume Elsa has no empathy, the same way they assume all autistic people have no empathy. In real life and fiction, this simply is not true. If anything, people on the spectrum are often empaths – people who feel so deeply, who try so hard to put themselves in others’ shoes, that they actually sabotage themselves. They come across as thinking everything is about them, and neurotypical people say so. Cue the shunning, the frustration, the grim predictions, you name it.

Elsa is no different. Again, it’s not obvious in Frozen, at least not for much of the film. Little kids won’t observe it, or if they do, they won’t know how to square Elsa’s empathy with the seemingly cold parts of her persona. But more mature people (read: Disney nerds like yours truly), can do some heavier analyzing. Elsa clearly loves Anna; even her attitude toward Hans stems from love. When she decides to “let it go,” it looks like she’s selfishly abdicating her position as queen. Yet through her dialogue, we see her first concern is actually for her people. Elsa’s reasoning, again, is that if she has to risk hurting those she’s supposed to care for, she needs to stay away from them. She actually lets herself be locked up rather than take that risk, or stand up for herself. And as we all know, Elsa’s ultimate act of empathy and love comes from recognizing, appreciating, and responding to the sacrifice of another.

So, is Elsa on the spectrum? I say probably so, and that thus, she has traits autistic people can relate to/might find themselves emulating. But again, that’s my opinion alone. You might read this and think, “Chick, you’ve hit the cocoa too hard.” And that’s fine. Just consider this a fun holiday post – a Christmas gift, if you will – to help you think about autism and other disabilities in a fun new way.

P.S.–Do other princesses or characters have disabilities/are they on the spectrum? Possibly. We’ve gone over a few who obviously do, like Quasimodo, and a few who represent disability, like Vanellope Von Schweetz. We may talk about this again; in fact, we probably will. But for now…

Merry Christmas, Happy Hanukkah, Happy Kwanzaa, and goodwill to all from the Nest!

Christmas Book Bonus Round 2

Hello readers,

You all must have been good this year, because you’re getting more book recommendations about strong, independent protagonists and people who aren’t often represented. This is partially because of the snowy conditions of the last post; we didn’t lose electricity but I kind of rushed it because I thought we might.

Also, I need to make a disclaimer for this and future lists: Some, perhaps many, of these books I have not read. But I still confidently recommend them because of who and what they represent. If I know of or suspect a problem like inspiration porn, I will make a note of that. And so, on we go:

Dear Martin (Nic Stone). This YA novel is gaining a lot of steam in the current climate, as it should. Jus recently experienced a scary discriminatory incident, and it’s making him question all he knows about what it means to be a black teen. He starts to notice more microagressions and wonder if he’ll ever be judged by anything other than skin color, or if people are lying when they claim they don’t judge him that way. What I love about the premise is that Jus deals with his feelings through letters written to Martin Luther King, Jr.

Dark Sons (Nikki Grimes). I read this in my brief teaching tenure in preparation to teach it to a class. It’s a modern take on the tale of Isaac and Ishmael. When Sam’s dad, a devout Christian, leaves and marries a white woman, Sam’s world is thrown into turmoil. When dad and stepmom have a baby together, that turmoil increases as Sam struggles with how or if to accept this child, who he is as a person, his racial identity, and many other layers of conflict. The actual story of Ishmael is interwoven, making for one of the most layered books I’ve encountered.

Counted with the Stars (Connilynn Cosette). This is one of my personal favorites; it takes a look at the Exodus story through the eyes of Kiya, an Egyptian slave. The catch is, Kiya used to be a pampered member of nobility. Double catch? She doesn’t believe in the Jews’ One God through most of the book. There are Judeo-Christian themes, but Connilynn is a great author for any audience. As a bonus, Kiya’s brother, a prominently featured character, is a three-dimensional person with a disability. (The book implies cerebral palsy, but naturally, it would not have been called such in that era). Great for teens and adults.

The Girl Who Drank the Moon (Kelly Barnhill). A middle grade novel, this one is also gaining serious steam; I see it in prominent bookstore spaces whenever I visit my local B&N. The book features Xan, a young girl who takes on the task of raising one of the babies sacrificed to a forest witch. As if that wasn’t hard enough, thirteen years later, Xan discovers her adopted daughter has magical powers. They came about because years ago, Xan accidentally fed baby Luna moonlight. And now, life is about to get a lot more complicated…

The Serafina Series (Robert Beatty). I’ve only read the first in this trilogy so far, but Serafina, the main character, definitely fits the parameters of this list. She was raised at the Biltmore Estate, but consigned to its basement so no one could see and be terrorized by her. Without giving too much away, Serafina is only half “normal person,” and she doesn’t know the other half of her heritage. Finding it helps her protect the estate and solve some intriguing mysteries.

The School for Good and Evil Series (Soman Chainani). As a huge fan of Once Upon a Time, these are on my To Be Read list even though they’re “for kids.” The series posits that every fairytale hero and villain you know went to school to become so. But what if one day, two students got switched? Sophie, who expects to be kidnapped, rescued, and trained/treated as a princess, is sent to the School for Evil. Meanwhile Agatha, who has all the characteristics of an ideal Evil student on the outside, is sent to the School for Good. Horrors! But maybe the best thing that could have happened to fairytale world…

Fish in a Tree (Lynda Mullay Hunt). Ally is illiterate, but nobody knows that. She’s been able to hide the truth for years. But her new teacher, Mr. Daniels, is a lot smarter and savvier than Ally bargained for. And Ally’s life, school and otherwise, is about to change.

Millicent Min, Girl Genius (Lisa Yee). Millicent Min may be a genius, but that label is not easy to carry, especially in the summer. This summer, she’s stuck tutoring Stanford Wong, and has just as many friends as ever – as in, none. When Millicent meets Emily, she seems to have found a true friend – but will Millicent have to lie to keep that friend? Check out Stanford Wong Flunks Big Time and So Totally Emily Ebers for books with the POVs of the other two main characters.

Mockingbird (Kathryn Erskine). This is another of those haven’t-read-yets, and I recommend it based mostly on its uniqueness, not because it necessarily handles disability well. Caitlin has Asperger’s, but her older brother was always there to help her navigate it – until he’s killed in a school shooting. Now Caitlin has two tough situations to navigate, plus people telling her she needs to “work on” herself and her Asperger’s, as if that’s supposed to help. (This is a great way to open the discussion of why PWDs are so often worked on, and have things done to them or for them, but are not worked with or asked for their thoughts/opinions).

Changes for Julie (Megan McDonald). Part of the Julie series in the American Girls Collection, this is the last book featuring Julie Albright, who grows up in 1974. It gets brownie points from me because it tackles both feminism and disability. Julie wants to run for class president, but she’ll be the first girl to do so, and against a popular male student. When she chooses her friend Joy Jenner for VP, everyone assumes Joy is a joke because she’s deaf. Julie tackles these issues without preaching or inspiration porn, and in my opinion, this book provides good discussion fodder for the beginnings of the disability rights movement. If you have a kid with a disability, especially a girl, you might talk about how it might feel to go to school with no modifications, to get in trouble because of a disability, etc.

The Unlikely Hero of Room 13B (Teresa Toten). Adam has OCD, but at least it’s not one of the “tough cases.” Robyn, a girl who he meets in his young adult support group, has OCD too – and her case is so tough she’s just been released from a residential program. Adam decides it’s his job to save Robyn – but who really needs rescuing here? One of the few books I’ve been able to find with a male PWD as the main character, and one I recommend for kids who like superheroes.

My Louisiana Sky (Kimberly Willis Holt). Also on my TBR pile, the heroine of this book is a TAB girl named Tiger Ann. The catch is, both Tiger’s parents have cognitive disabilities (I have *never* encountered that in a book before). Tiger Ann is embarrassed and ashamed of her parents, and thinks a summer with her aunt will provide needed escape. That is, until she learns some family secrets that could change everything.

Nothing’s Fair in Fifth Grade (Barthe deClemens). Elsie Edwards is fat – so fat she can’t see her shoes. She begs other people for their food at lunch because her mother puts her on a strict diet. She steals people’s lunch money to buy candy too, so when the book fair money goes missing, everybody assumes Elsie did it. But the truth may force the fifth grade to rethink how they see Elsie, and what “helping” her really means.

Heartsong (Kevin Crossley-Holland). Laura is an orphan, abandoned at a Viennese orphanage in infancy. Perhaps because of the abandonment, perhaps for medical reasons, Laura can’t speak. But then she meets a composer named Antonio Vivaldi, who unlocks her gift for music.

Matilda (Roald Dahl). Why this book never made any previous lists, don’t ask. I don’t know. Matilda Wormwood is the epitome of a strong and independent heroine, and while she doesn’t have a disability, her family and principal certainly treat her as though she is defective and second class. But Matilda is not about to take that lying down – she’s too smart for that. Even if you know this story inside out, grab a copy for the kid in your life.

The Popularity Secret (Cindy Savage). This one is out of print, but if you can find a copy, snap it up. Teenager Janet had a great life with her adoptive parents, but when they were killed in a car accident, she was consigned to the foster care system. Janet’s social worker promises the Kingsleys will be different – they never send anyone back, “no matter what.” And Bob and Sherry Kingsley do seem like warm and welcoming people, as do Janet’s new foster siblings. The problem is, all but one of Janet’s new brothers and sisters have disabilities, and the kids at school are pressuring Janet to take sides. They think because Janet is a “reg” (regular), she shouldn’t want anything to do with all the “crips” in school. But what are the popular kids gonna do when they find out about Janet living with the Kingsleys? This was one of my favorite books as a kid, and possibly the only one I’ve encountered that shows an ability-integrated school.

Okay – that’s plenty to think about, yes? Happy reading – and if anybody has any recommendations for the next list, feel free to write in!