Monday, November 10, 2014

Examples of Ableist Language

The title of this post is a search term that led someone to my blog, and one that I believe merits talking about again.

If you are uncomfortable with the thought that you might have to change something as simple as what you say in order to make a huge difference for many other people, click away now.

For those of you who are reading this, thanks for staying with me. Of course we know oppressing people is wrong (at least I hope so!), but what if we're hurting other people with our language and don't even know it? What is ableist language, anyway?

  • Slurs.
This is the first one most people would think of - using the r-word (r*tard) to mean "stupid" or similar words. It is far from the only word society has turned from a medical term to an expression of ridicule, however: some people view words like "moron" or "dumb" in a similar light, as they were once used the same way.
  • Slang or comparisons meant to be unflattering.
There is an internet meme popular among preteens and teenagers in which the term "herp derp" is used to make fun of somebody viewed as less than intelligent. What a lot of people don't seem to know is that this phrase surfaced as a way to make fun of people who could not speak clearly, specifically those with Down syndrome (a characteristic of this disability is low muscle tone).

The second part of this bullet point refers to cringe-worthy sentences such as "he's dumber than the special-ed class" - and I really hope I don't have to explain why this is ableist.
  • Sympathy for the caretaker of the individual over the individual themselves.
Here is where I believe I will lose some readers. You don't have to look far on the internet to find talk about how hard it is to raise a child with disabilities (especially intellectual ones) - and I completely understand that. It can be hard to take care of a child, or even an adult, who is disabled.

However...it is much, much harder to be the person with the disability. Yes, it is hard to explain boundaries to some people with intellectual disabilities, but it isn't you who's going to get in trouble if they don't understand it (at least, not once they hit the age of about ten - a little older if they're lucky). Yes, it is hard to communicate with someone who is nonverbal, but it isn't you who's going to run into problems when they find people who are not willing to compromise.

At the end of the day, it isn't you who's disabled. It isn't you who is going to have to be in that person's body and mind for the rest of their life.

  • Not respecting the wishes of the individual in situations that affect their disability.
Let's say you think it would be nice to take your child to a movie. However, your child has sensory processing disorder and says the movie theater would be too loud (or dark, or crowded, etc). You're sure they'll have a good time anyway, so you take your child to the movies, and when they have a meltdown in the theater because of the concern they mentioned earlier, you get angry with them - when it's you who wasn't listening in the first place.

This can be much more serious than going to a movie. If your child doesn't like a therapy designed to help them, it is time to ask very careful questions. Individuals, especially kids, being physically abused at therapy is far from unheard of. If your child is complaining of not wanting to go, that is reason to suspect something bad may be going on.

  • (Possibly) Not using person-first language.
This isn't one-size-fits-all. For the most part, it's thought of as correct to refer to someone as a person first: "a girl with developmental delays" or "a boy with RAD." The mentality of this is that even without their disability, they are still a person.

However, there are individuals and even communities who prefer to state the disability first - asserting that the disability is a part of them and helps to make them who they are. Some examples of this are the majority of blind people and the Deaf.
  • (Possibly) Viewing the disability as something that needs to be fixed.
I wrote this as possibly because there really are some people, mostly those who became disabled later in life, who would like their disability to be "fixed." This point mainly applies to intellectual disabilities that can't be cured. We can't, for example, cure Down syndrome, because we have no control over how it happens (although some try to "cure" it by promoting abortion of fetuses determined to have it...but that's a topic for another post). If you are born with Down syndrome, you will always have Down syndrome. You won't know what it's like not to have it, just like someone without the syndrome can't know what it's like to be in that body and mind.

So you have this disability, and you're the same person you've ever been, and now people are asking you, "Don't you ever wish you didn't have that?" or talking about ways to cure it. Of course, if you didn't have that disability, you wouldn't be you. You'd be somebody different, somebody you wouldn't understand.

"I wish we could cure Disability XYZ" is often heard as "I wish people with Disability XYZ didn't exist."

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Thank you for sticking with me through the post. I've done my best to make this a clear list, but it's possible I missed something. As always, I am open to suggestions in the comments.

Saturday, November 1, 2014

Angel Tree Warrior

Today is the first day of the RR 2014 Angel Tree. From now until the end of the year, every warrior has a goal of raising $1000 for their child.


"Samantha" is the girl I'm a warrior for this year. She turned seven last August, and has a diagnosis of Down syndrome. Physically, she is healthy with no heart issues or any other problems. Her profile describes her as active, with good motor skills, but normal language delays. If there is singing or dancing on the TV, she loves to imitate it, and she enjoys "looking pretty." A family would be blessed to have her.

Samantha is in a country it typically costs at least $25,000 to adopt from. The more money she has in her grant fund, the more likely it is she will be CHOSEN and the faster her family will be able to get her home.

Right now, her grant fund is just over a thousand dollars. Reaching her Angel Tree goal would double that. If we can get her fund to $2500, she'll be moved to a special page on RR that lists children with large grants, further increasing her visibility.

So my goal this year is to raise $1500 for her and get her on that page. That divides out to about 43 ornaments. It is a big goal, and I don't know if it will happen, but I know I can try.

You can see all of the children here. It's possible to either make a regular donation of any amount, or to buy an ornament with that child's photo on it for $35.

Thursday, October 9, 2014

OMG, Your Kid is Neurotypical?

So, like, do people stare when you go out in public?

When did you find out? Was it upsetting?

That's so nice of you to take care of a kid like that.

I would have such a hard time being your kid's mom (or dad).

My sister has a neurotypical kid, and it tore her family apart.

That's not catching, is it?

Don't you ever wish you had a child with disabilities?

I'm sorry. This school just isn't equipped to handle a neurotypical child.

Wow, I didn't even know people like that lived around here!

But if there were a way you could flip a switch and have a kid with a disability instead, you'd do it, right?

Don't they still put people like that in, you know..."homes"?

Isn't it really expensive to look after a kid like that? How do you afford it?

My best friend's kid is neurotypical, too. I should introduce you two.

We learned about those kinds of people when I was in high school, but I've never actually met one.

I'm sorry my daughter is so shy. She's never been exposed to a neurotypical before.

But I thought all neurotypical people were happy all the time.

Just wait. They'll find something a few years down the line.

Are you sure? My brother is neurotypical, and he doesn't act like your kid.

I'm so sorry. That must be really hard...

Monday, October 6, 2014

That Time Again

For every holiday season I've been blogging, I've been a Christmas Warrior for a RR child. For those who don't know, this is the biggest fundraiser they have, and it's every year running through November and December. Warriors sign up for a specific child and are given the goal of raising $1000 for their kiddo.

If you donate $35 or more to one child's grant, you get a cute little ornament with their picture on it! These are the ornament designs from the last three years.


In 2011, Carmen was my warrior child. That's her ornament from that year in the top row.

In 2012, I signed up to warrior for Carmen again. The second ornament is of a little boy named Trey, who is also stuck in the closed country. (I should add that this was not the full design of the 2012 ornaments - mine were not handled well in shipping and the "starfish" part of the ornament cracked.)

Last year, I was terrible at being a warrior. I admit it. Those ornaments are for little Andrue and Prudence, both of whom still really need a family. (Prudence also needs a Christmas Warrior this year. Andrue is not on the tree because he already has a large grant!)

I'm going to do better this year.


This little girl (her alias is "Samantha") has been overlooked too long. I'm going to be sharing plenty about her with you from now through the end of the year.

But for the moment, the fundraising efforts haven't started yet. They begin on November first, which means we have less than a month to get every child a warrior.

Here is the list of every child on the Angel Tree. Many of them are still in need of a warrior who will help raise funds for them and lift them above the crowd. If you aren't already a warrior, please consider signing up. You could change a child's life.

Sunday, October 5, 2014

Reminders

A fellow blogger and RR advocate created my header and blog design years ago. I chose four waiting children and asked her to add their pictures to the header, because the primary goal of this blog is to put a face and name to the word "orphan."


The header helps with that. It is also a reminder.

Three of these kids are stuck in a closed country. The fourth (the boy on the lower left) is one I cannot find on the website anymore.

Maybe his birth parents took him home, but I doubt that. He could be anywhere.

These are children who will likely be never coming home. Some days, they're an important reminder of why it's necessary to shout for the orphan. Maybe shouting a little louder could have brought those three home before R*ssia closed down their adoptions.

Numbers are easy to look at. Faces, not so much.

If the doors are not reopened, in a few years those kids will head for one of two outcomes. Either they will be brought to a mental institution for adults to live out the rest of their days underfed and lying in their own waste until they die an early death...or they will be thrown out on the streets.

In order to live, the girls will be forced into prostitution. The boys will turn to crime and wind up in jail. What choice do they have? Nobody will employ them in their country.

And until the doors reopen, there is nothing we can do for them.

But we can speak for the others who are still waiting.

If we do not learn from history, it will repeat itself.

Saturday, September 6, 2014

The Child You "Might" Have Had?

I want you to imagine something with me. It's not a hugely unrealistic scenario - in fact, it might even be something you or someone you know has actually been through, or similar.

You and your husband have a healthy son who is three years old and perfect to you in every way. After a few months of trying, you discover you are going to give him a baby sister. You and your husband decorate the nursery, pulling out all the baby things from when your son was born, and read books to him to prepare him for the baby's arrival. Everyone is very excited and can't wait to meet her.

Maybe you get the news when she's still in the womb.

We think your baby may have Down syndrome.

We're seeing signs of cystic fibrosis.

(At this point you might be pushed to consider abortion. I'm not sure of the statistics for other disabilities, but the abortion rate for Down syndrome is upwards of 90%.)

Or maybe you don't get the time to fret and worry too much before you even meet your daughter. Maybe you hear it when she's born, before you even leave the hospital.

Your child failed the hearing test.

We think there may be some bone density issues.

It could even be that you don't hear these things until she's a toddler, or maybe elementary school age.

It looks to me like classic autism.

We've ruled out everything but child-onset bipolar.

So what do you do? You probably reach out for support, especially if the disability is something you don't know very much about. You want to hear from other parents raising a child with that disability and how they manage certain things, what resources are out there, and what sort of prognosis is expected for your child. And in reaching out, you probably hear one thing over and over from parents who have "been there": grieve for the child you might have had.

I'm not going to tell you that.

Let's go back to your son for a minute. He's three and he does very well in preschool. As he grows up, he's going to be a good student all his life, get a scholarship to a good college, and become an engineer.

You're proud of him, aren't you? Why is that?

Why aren't you grieving where your son is concerned? You might have had a child who grew up to be an astronaut or a lawyer. You might have had a child who had lots of friends, or volunteered on the weekends, or got his first job at fourteen, or went to Harvard, or spoke five languages...

But none of that matters to you, does it? That's because you have your son. You're happy to have your son. You're not grieving for the child you might have had because you have this child right in front of you.

"Oh, but my daughter has this disability and they think she might never learn to walk/be able to hold down a job/live on her own..."

Fine. I want you to go find your daughter, no matter her age, and tell her how sad you are that she wasn't born as someone else.

"But I love my daughter. I just wish she could do what my son did."

If you love your daughter, you need to love everything that makes your daughter who she is. Whether you heard her diagnosis for the first time before she was born or when she was just hours old or when she was two or twelve or sixteen - that is part of who she is.

And unless there was a horrible accident involved, it's been part of who she is from the moment she was born. You have the same child, but now you know more about that child.

Forget the child you might have had. This is the one you do have. How are you going to help?

Friday, August 22, 2014

Holland Has Tulips

There's a story that parents of kids with special needs like to pass around. It's called "Welcome to Holland," by Emily Perl Kingsley. It's very short, so if you haven't already read it, it won't take more than a few minutes to do that now.

I will admit the wording of the story in some places isn't the best. Even so, as I was reading it, there was one bit that stood out to me (emphasis mine):

"The important thing is that they haven't taken you to a horrible, disgusting, filthy place, full of pestilence, famine and disease. It's just a different place."

And that's what occurred to me as I was browsing RR's new additions and came across the profile of a little girl whose screen name was none other than Holland



Of course, adopting a child with special needs is different than having a child with special needs. With adoption, you usually know right from the start that you aren't going to Italy. That sounds beneficial at first. You get more time to prepare for Holland, right?

Well, yes. You also get more time to worry and read up on symptoms your child may never have, health problems they may never exhibit, and so on. It's much easier to lose the child in their disability when you know you're going to Holland.

Why can't we just let Holland be Holland? Why can't we prepare for Holland the way we'd prepare for Italy? You wouldn't go on a week-long vacation worrying that it might rain the entire week, and you wouldn't keep yourself from having a baby just because you're worried they might get colic, or acid reflux, or have problems nursing.

But if it did rain the entire week? That doesn't mean you can't enjoy your vacation. If you found out breastfeeding (or something else important to you) would be impossible? That wouldn't keep you from making the best of things. You'd take it as it came.


Please don't love Holland in spite of it not being Italy.

Love Holland because it isn't Italy, and because Holland has tulips.