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Archive for January, 2016

Pigeonholed People: Should We Be Saying “Autism Parents?”

Hello readers,

Words are powerful things, aren’t they? Almost every time I sit down to write a post in this blog, I’m reminded of that truth. In fact, I have an important post about words that I want to write–am convicted to write–but I don’t yet feel ready. So today, we’re going to look at the phenomenon of phrases like “autism parents,” “special needs parents,” and so on. This post is mostly about parents but can apply to other people, too.

I’ve noticed this phenomenon around Facebook and other social media, particularly sites that I like and support such as Shut Up About Your Perfect Kid, the Asperger Women’s Association, and others. Now again, these are great sites and I love the work they do. However, some of their memes are a little disturbing.

You’ve probably seen these memes and phrases. You know, the ones that say stuff like:

-All these parents are talking about honor rolls, ballet recitals, and sports, and autism parents are like, “Woo-hoo! My kid tried a new food and her socks didn’t bother her!”

(In reference to the recent Snowmageddon): A meme shows a woman muscling a huge jar of ketchup into a buggy. The caption reads, “Autism parents be like, ‘This’ll last a week.'”

-Various memes that say things like, “I’m a special needs parent/caregiver. What’s your superpower?”

-Stories put out by sites like The Mighty that feature “games” like “Meltdown Bingo.” These are meant to be a humorous look at autism and other disabilities, and the “behaviors” they sometimes lead to. However, as you probably know, the backlash is pretty intense, and in my humble opinion, it should be.

Again, I’m not one to police people. If your child has a disability and you want to call yourself a special needs parent, have at it. But I am concerned about what this language is telling society about disabilities, and the messages it sends to PWDs themselves, especially children. Let’s take a look at these messages, okay?

  • (Disability) parent sends the message that you are not raising and nurturing a child. You are raising and nurturing a disability or set of needs first, foremost, and sometimes only. This pigeonholes the child or teen so that he or she comes to believe, “My needs, disability, and differences = ME.”
  • (Special needs/disability) parent pigeonholes you as a person and a parent. It sends the message to other parents that you can’t do, feel, or relate to what others do. It sends the message that because your needs and experiences are different, you should be segregated as much as your child is. Inclusion is not best for you, your child, or anyone who cares for and loves you and your child.
  • This language tends to focus on the negative parts of having a disability like autism, CP, sensory processing disorder, whatever. Do those negative parts exist? Absolutely, but they are not worthy to be focused on. For example, every parent or guardian needs to vent, and that’s fine. It’s healthy. But if all you do is talk about your kid’s “meltdowns,” or how he or she won’t eat anything but these X five foods, you are telling yourself and your child, “My child and situation will never change.”
  • This language also perpetuates the idea that the frustrating parts of a disability or disorder are all your child’s fault. I’m going to leave that one here, because I don’t have to explain the damage that does.

For those of you who may be curious, I’m now going to address another question. What if you use this language, not to hurt anyone, but to be humorous and to give these parents a “break”, as it were? Again, I understand that, to an extent. That’s why The Mighty created that Meltdown Bingo post. But as much as I try to sympathize, I’m going to be blunt: you’re playing a dangerous game. Can disability be funny? Sure, sometimes. I poke fun at myself all the time. And if you can’t laugh at yourself, you’ll probably have a much more negative life. But disability and humor is tricky. Whether it works depends on what you’re laughing at and who is laughing with or at you. If the disability community is not laughing with you, you are crossing some important lines.

I’ll also be blunt with this element: Disability humor like Meltdown Bingo often only speaks to one side of the disability story. That is, it allows parents, guardians, caregivers, and the “experts” to express their frustrations and laugh at them–but what about the person with the disability? Why are we so focused on their caregivers’ experiences, while not asking them enough about theirs? When it comes to disability, whose experience matters more? Whose life is it? (Stay tuned for an upcoming post entitled, Whose Experience Is This, Anyway)?

So, to wrap this post up: Yes, sometimes life with a disability is hard. Humorous elements can be found there, for both PWDs and their parents/caregivers/friends. It’s okay to talk about those. However, we need to be careful about the words we use and who is laughing with us.

For more about this, see the December 2011 archives, the post entitled: Disability Humor: What Are We Really Laughing At?

A is For Ableism: What is “Ableist?” What’s Not?

Hello readers,

First of all, thanks to Sue Grafton, whose alphabet-themed mystery novels inspired the title of this post. My theory is that you could probably come up with a different disability-related word for every letter of the alphabet. I’m not going to try to do that, but I may come up with other “letter posts” as the year goes on. Now, on to the topic.

Ableism is a popular word these days. Now, if you’ve been reading this blog for awhile, you know I am not a proponent of political correctness. If anyone ever told me, in all seriousness, that Southerners should all be called “Appalachian Americans,” I’d fall down laughing. (I’m from the South, by the way, and that’s one of our particular jokes). I believe all December holidays deserve recognition and respect, but you can still say Merry Christmas, or not, if and when you want. If your sitcom character with a disability happens to use a wheelchair, I’m not going to jump on you. That’s why I’m very careful about calling something ableist or even using the word. The more we police ourselves and each other, the more miserable we’ll be.

But what happens when words and actions cross into true discrimination? You’ve probably seen this–black people being called the N word or using it on each other. Well-meaning fathers telling their sons not to “act gay.” Somebody making a remark about “getting gypped” or “getting Jewed” at a store. (My living grandmother once did this last one right in front of me, and had we been alone I’d have given her a piece of my mind. Amazing what family gatherings will do for your restraint).

How do you know when words or actions are truly ableist? What are some common instances of ableism? Moreover, what do we do about it? Can we stop it?

 

Example 1: College friends are discussing a class assignment. One student calls it “dumb.”

Is this ableist: In my opinion, no. There are definitely ableism-driven words out there, and we’ll get to those in a minute. However, our culture has evolved in such a way that “dumb” no longer means “unable to speak”; in fact, it’s offensive if used that way. “Dumb” now means “stupid,” “not enjoyable,” and several other things. It’s not polite to call people dumb, and it damages self-esteem if done too much, but it’s not classically ableist.

This said, words like the R word are definitely ableist. The argument is that “it’s just a word,” but words like that are describing whole groups as undesirable, just like the N word does, or like it does to call LGBT people “deviant.” Don’t do it.

Example 2: A teenage girl is having a particularly bad episode of PMS. Her parents say, “Stop acting crazy.”

Is this ableist: Depends. The majority of the mental health community sees this as an ableist word and I am inclined to agree. Why? “Crazy” is used in such a way that it denotes, “This person is of lesser value. This person does not understand reality and cannot participate in it.” This is particularly true if that teenage girl is experiencing/expressing real anger, sadness, or other emotions that others simply don’t understand.

Of course, we all use “crazy” now and then. You might use it when watching a YouTube video showing a man dancing naked through a patch of cacti. You might use it affectionately, as in, “My husband is a funny, crazy guy who brightens my day.” I’m not going to say, “never say this word”–to me, it’s kind of like the Appalachian American thing. That said, be careful when you use it, and never say directly to a person, “You are/are acting crazy.”

Example 3: A restaurant owner or manager comes up to a family dining out with a child or other relative who has autism. Because the person is behaving in a certain way, the family is asked to leave.

Is this ableist: Yes. A PWD should never be barred from or kicked out of any establishment because of the disability, and neither should loved ones. It’s the equivalent of saying, “This is not a colored restaurant.”

Example 4: The owner of a small store has aisles that are too narrow for wheelchairs or strollers in certain parts of the store. Customers with disabilities are encouraged or outright told not to use those areas.

Ableist: Yes. Intentional? No, maybe not. This is why ableism is tricky; a lot of people don’t mean to do it. Then again, a lot of people don’t mean to positively discriminate against Asians by saying they’re all great at math, either. By law, if your place of business is going to be accessible, the whole place must be. You also cannot effectively tell someone, “Stay out of this section.” If you don’t know how to make a business or house accessible, you need to do some research.

Example 5: A hired matchmaker suggests to a client with a disability that he or she “try dating disabled individuals first” or only makes matches with other PWDs.

Ableist: Yes, and it happened in real life. This statement assumes that PWDs are not equal relationship partners, can only relate to TAB people as caregivers, and are better off with “their own kind.” It’s the same thing that happens when a teacher suggests a student be in a self-contained classroom or receive services that are not necessary because he o she has a disability.

Example 6: A school theater director who regularly modifies productions to reflect racial differences, sexual orientation, and national origin only gives bit parts to cast members with disabilities.

Ableist: In most cases, yes. The key is, the director is picking and choosing what to modify, which is unfair to a whole population. However, the arts are tricky. There are three cases in which this would not be ableism:

1. The actor is really only experienced enough for small roles.

2. The entire point/integrity of a role or production is changed if it is modified for disability (i.e., if your lead character will be performing gymnastics tricks onstage, and you can’t get rid of those scenes because the production revolves around them). This goes for modifying for race, orientation, or other differences too, by the way.

3. Disability precludes an understandable performance (for example, you have a deaf actor who cannot speak intelligibly.) However, if you then bar that actor from participating, or you punish their deafness by never letting them do anything meaningful, you are committing ableism.

Ablesim exists, but many of us are still in denial. Fortunately, just as many of us want to prevent it. Knowledge is power, and it is my hope that these examples helped.

 

 

Enter as A Little Child: What Kids Teach PWDs–and The Rest of Us

Happy New Year, readers!

I hope everyone had a joyous and blessed holiday season. Some of my Catholic readers may still be in the throes of the Christmas season since the Day of Epiphany is coming in two days. In honor of that day, and in honor of the place where I got the idea for this post, I’m going to inject some extra Christmas spirit into our time together. I also hope to give you all a fresh perspective for the new year.

Back in December, I was out of ideas for IndependenceChick’s Nest. But this Saturday, a new one found me. I was standing in the book section of my local Sam’s Club, and I ran across this book called 52 Little Lessons from A Christmas Carol by Bob Welch. Now, those of you who have been reading this blog for awhile know I love A Christmas Carol. I’m not a fan of how Tiny Tim is represented, but I’m willing to give Charles Dickens a pass due to the time period. So I was eager to see what lessons Bob Welch had found in this wonderful classic, but short, holiday ghost story.

Standing in Sam’s doesn’t give one the opportunity for deep reading, but I focused on one particular lesson out of 52. In it, Welch describes Bob Cratchit after he leaves from work on Christmas Eve. Rather than being discontented or angry with Scrooge, as anyone would have a right to be, Cratchit joins some neighborhood boys for ice-sliding. He becomes like a child, and that ratchets up his contentment level. It gives him an extra dose of Christmas spirit. It lets him focus on the good things in his life.

Welch goes on to tie this into Jesus’ admonition to enter the kingdom of God as a little child. “The kids are onto something here,” he writes. “Listen to them.” Kids aren’t worried about paying taxes or putting gas in the car or making therapy appointments on time. They just want to enjoy life.

Of course, we can’t always act completely like children; it would be counterproductive. But that’s not what Welch, Cratchit, or Jesus is going for here. They’re telling us to embrace childlike hope and childlike faith.

Now, PWDs get maligned for being “perpetual children” all the time, and that’s straight-up wrong. No matter your cognitive level, you are a human being who deserves to be treated the age you actually are. That being said, if some PWDs indulge in what we see as “”childish” behavior, how bad is that, really? In other words, we act uncomfortable or embarrassed when we see a twenty-year-old woman with a mental disability playing with Barbies. But why is that? She’s using her imagination. She’s engaging in the real play that we as adults say we miss but rarely indulge in because we’re too old. Maybe she’s making sense of her world. And there is nothing wrong or bad about that.

Sometimes, “childish” doesn’t even mean “childish” in the traditional sense. For example, an adult with Asperger’s or high-functioning autism might be called childish, babyish, or bratty because he needs structure and routine, or because he eats a favorite food every day. The people who are supposed to care for him don’t like this, so they use goals and plans and discipline to try to force it out of him. But why? When people without disabilities stick to routines and plans, we say they’re organized and structured. We respect that. When people without disabilities have favorite foods, we say it’s normal–whereas we say a PWD has a food addiction and the food needs to be used as a behavioral incentive. I’ve asked it before and will again: why are we doing this to our fellow people? Are they not of the human race, as the Ghost of Christmas Present said? In fact, I love the way that most little children respond to PWDs. They might stare or ask questions because they’re curious, but often, they aren’t cruel. Like Tiny Tim, they are more ready to accept disabilities and differences than most of the adult world.

I’ll close this post by talking a bit about yours truly. Cognitively, I am a woman approaching her 30s. In fact, I’ve been accused of being an old soul. But sometimes, I want to go back to the way things were when I was a kid. I turn on the cartoons I used to watch on YouTube, or I play Christmas music in August just to elevate my spirit. Over the holidays, I went out and bought copies of Rankin-Bass’ Rudolph the Red-Nosed Reindeer and Santa Claus is Comin’ To Town, because they remind me of my deceased grandmother. But sometimes I hide these tendencies, and certain interests, because I don’t want people to start wondering if they mean I’m cognitively disabled. (More on the disability hierarchy in future). My self-reflection question though, is, if so many people, including the Founder of my own faith, extolled the enthusiasm, love, and faith of little children…

Then what’s wrong with any of that? What’s wrong with going to God and saying, “I’m scared/angry/sad…I need a lap?” Why don’t we do more things like that, and why do we shun the PWDs who have an easier time of it than we do?

Scrooge eventually learned that in order to be a happy, good person, he needed to stop shunning people and start embracing happiness. Now, I’m not saying to be Merry Sunshine constantly–that’s fake and everyone can see through it. But maybe if we stopped shunning children, and treating PWDs like dumb little kids, we’d all be a little wiser. The kids are onto something here. Listen up.