Disclosure in Exchange for Respect

In our effort to increase awareness and acceptance about disabilities, a subset of people seem to have latched on to the idea that if we just tell people we're disabled, others will suddenly understand be kind to us.

I'm talking about Sainsbury offering extra assistance to anyone wearing a sunflower landyard. Anyone with an invisible disability is welcome to pick one up for free and then shop freely, while displaying their diagnosis to the world in exchange for basic respect.

Or parents buying blue plastic pumpkin baskets or making signs or special treat bags that say, "be patient with me, I'm non verbal." But let's keep it real about what is actually happening: adults are withholding candy from children because they don't say "trick or treat" properly or at all. Who exactly is acting like an adult and who is the child in this situation? It's candy. It's cheap. People come to your home on one specific night a year and you've decided now you are the ableism Halloween candy police and must Lord over the visitors who are requesting candy? Give me a break!
Can we just agree to give candy to whoever comes to your door, without being racist, sexist, classist or ableist? Is it really too much to ask?

No one and no parent, should have to explain or disclose a disability in order to simply exist, shop, work, trick or treat, or just take a walk down the street. I shouldn't have to wear a giant sign on my head to have you be kind to me or use some patience.

Similarily, I had a conversation with a friend online recently where a meme was explaining some proper grammar for common expressions and I posted it not because I care about proper grammar, but because I wanted others to understand that those with speech impediments might get these wrong simply because they're hard to pronounce. My friend replied that people should at least know how to spell them correctly then. I said, "dyslexia is a thing and does not indicate a lack of understanding or intelligence." The friend responded, "people with disabilities get a pass."
No, that's not how it works. How about just don't judge at all? You are not the holder and giver of the "pass." We don't need your judgement. And a "bad speller" stranger on the internet shouldn't have to provide their diagnostic reports in order for you to not pass judgement.

I'm really tired of people suddenly requiring everyone else to provide an explanation for being different, needing some help, or just wanting a bit more understanding, in order to be treated like a human being. 

Not All Opinions Are Equal

In another form of tone policing lives the statement: we all need to come together, get along, and all opinions should be respected.

Actually no. All opinions do not need to be respected. Not all opinions are equal.

You might have the opinion that killing kittens on the weekend is totally acceptable. I am under absolutely no obligation to respect your opinion. Just as much as you have a right to kill kittens, I have a right to tell you I think you're wrong. I am under no obligation to "get along" with you just because we also both happen to like the colour red. I am under no obligation to respect the fact you do it in the privacy of your home. All I can do, is report it to law officials and let them decide, but other than that, I don't need to respect your actions.

Similarly, some opinions are just wrong. I do not have to respect opinions that don't make any scientific sense. I don't have to respect people who shove bleach up their kid's ass because they think it will cure autism. Actually, I think that's child abuse, so no, I will not respect that.

I'm not really sure where this idea of "respecting" opinions comes from. I can agree to disagree with you and move on, but I have no need or desire to respect you or your opinions. Of course, you are free to do the same with me.

When we're talking about a divided community, no, I will not unite with people I can't respect. Especially ones who do harm. I, quite frankly, don't want you on my team or trying to represent me. Because you don't. We have about as much in common as a snail and a car transmission.

When it comes to the autism community, the ones who get the biggest share of the voice pie are actually Autistic people. Then come allies. I don't have to listen to the input of allies, but allies should for sure listen to mine. It's not fair, you say? Well, life isn't fair, is it? I get to be in charge of my story and that narrative, and if you want to help, the best thing you can do is to listen and repeat it. That's it! Your job is complete!

You don't get to change the story or tell me to edit my tone or delivery of it. You also don't get to blame me for dividing the community because you hear something you don't like. Either you're an ally, you're or not. If you no longer agree with the story, you don't have to keep reading it or repeating it. And none of that is my fault. You're in charge of what you do and I'm in charge of what I do.

The autism community is not divided, you just don't happen to agree with some parts of it, but the vast majority of us agree on the major points and either you're with us, or you're not. 

For Anyone Who Has Ever Been Silenced

I don't need to give you a reason

Stop touching me
Stop talking to me
Stop hurting me
Stop hugging me
Stop kissing me

I don't have to tell you why I don't like it

Stop looking at me
Stop invading my space
Stop asking me questions
Stop calling me names
Stop disrespecting me

I don't care if you don't understand
I don't care if you feel hurt
I don't care if other people like it
I don't care if you think I'm too sensitive
I don't care if you think I like it
I don't care if you didn't hear me the first time

My body is mine
My life is mine
Only I get to decide what to do with it. 

You Can Get Angry Without Shaming

TRIGGER WARNING: Discussion of childhood verbal abuse and a video with mature language imbedded

I've written about expressions of anger and frustration before. Rather than qualifying emotions, I simply feel that all emotions need to be expressed and released. Sometimes they need to be shared and sometimes that is beneficial. I also believe, however, that there are appropriate and inappropriate ways to express one's emotions. My basic belief is "if it harms no one, including yourself, it's probably appropriate."

 This means you can hit pillows when angry (since you probably won't hurt your own hands), you can throw ice cubes at the tiles around the bathtub and watch them explode. (Make more ice cubes for others after or buy a bag of ice specifically for this.) You can scream into a pillow. You can go for a run around the block. You can smash Play-Doh in your hands. You can call a friend. There are so many options to let emotions out.

As parents, we need to give our children options for releasing their emotions, rather than forcing them to keep them inside. We need to show them appropriate ways they can calm down and self-regulate. We need to set the example for how we want them to express themselves in healthy ways. This means as parents and the adult role-model in the situation, we need to watch our own anger issues. 

No one is expecting parents to never get angry. We deal with so many stresses all the time, little things can tip us over the edge. But as adults, we can behave better than children. We have the power to choose how we will react. In any situation, you can react with calmness and empathy for your child, or you can react with contempt, negativity and shaming.

For example, a child can accidentally spill their milk all over the table. In that split second as you see the milk spilling all over the table and the floor, you can say, "why did you do that? I told you to be careful! What's wrong with you? You're so clumsy!"

Or you can say, "oh dear, look at this accident! It's a mess and we'll have to clean it up together."

One teaches the child that there's something wrong with their character and they are inherently flawed. It may also teach the child that your love is conditional on perfect behaviour. The other teaches your child that mistakes happen and that they have to take responsibility for their actions (by cleaning up to the best of their ability) to correct the problem they caused. It makes no statement on their character or value as a person. It just means there is an effect to their actions on the world and they have an opportunity to fix problems as they arise. 

So when I saw this video on YouTube, I not only thought it was funny, but an example of a wonderful relationship between a father and son. One, the son felt safe enough with his father that he knew he could prank him like this. But also, listen to the choice of words the father uses to express his disappointment. He's able to express that disappointment without expressing judgement on his son's character or value. While he does use colourful words (you've been warned about his language), he still sticks to the facts of the problem - it is costly to retake the test and he fears if he has to go again that he will be failed again. At no point does he call his son a name (although he does suggest his son should have used his charm to "sweeten up" the testing agent).

Again, as a parent, you have a choice: react with love and compassion or react with hatred and contempt. How do you want your children to feel about you in the long run? How do you want your children to feel about themselves? Do you want a close relationship with your children or do you not care if you're alone in old age?
I'm not making up extremes. I know of what I speak. I was the kid who was called "stupid" and "idiot" for simple mistakes. What do you think that did to my self-esteem? What do you think my relationship with my mother is like now?

Take heart - if you are not reacting with love now, you still have time to change. You can still repair some damage. It means you will have to take responsibility for the mistakes you made. It means you will have to apologize to your child for all the times you messed up. It's not too late to try. You have a choice. 

Bodily Integrity and Children

Bodily Integrity is most often mentioned when debating abortion, but it has a major place in how I choose to parent my child.

Bodily integrity (or bodily autonomy/body autonomy) is the concept that each individual has rights to his or her own body. They have the right to choose what to do with it and who will touch it and when.

This is one of the reasons I don't believe in circumcision. It's also why I'm against piercing a baby's ears before they are old enough to ask for it themselves. By all means, if my son would like to alter his body with tattoos, piercings or even cut off his right pinky finger, he's free to do so once he's old enough to consent. As it is NOT my body, I do not have the right to alter his body unless it is a serious medical necessity.

What I want to focus on is where it concerns ALL children: expressions of affection. Often you will see parents say things like, "go give Grandma a kiss!" Whether the child wants it or not, they are usually scooped up and covered in kisses. This is extremely disrespectful and sets a precedent for abuse because it disregards the child's feelings. It tells the child that whether they like it or not, sometimes they have to accept being kissed, hugged and held by people they don't want. When you tell them they don't have a choice, that their "no" is ignored, they learn that there are times when they must ignore their true feelings and let certain things happen.

When someone tries to molest them, do you think they are good at saying "no?" It wasn't listened to before, so why would anyone listen to it now?

When they are teenagers and a boy starts trying to kiss or grope them and they don't like it - do you think they will say, "no" or will they accept that sometimes you just have to put up with these things?

This is why I always ask my son if he would like a hug or a kiss. This is why if he says, "no" I respect that and leave him alone. It doesn't matter that I'm his mom. It doesn't matter I don't have bad intentions. What matters is that he is given complete control over his own body and has the confidence to say "no" if he doesn't want someone in his space.

As a mother, it means sometimes I do not get a kiss goodnight. As a mother, it means I may go months or even years without a hug or kiss from my son, if he chooses. Because it's not about me or my body.

When it comes to parenting an Autistic child, it means he is allowed to jump, spin, flap, hum or do whatever he wants to do with his body, as long as it doesn't hurt anyone else. Because it's his body. And by hurt, I mean actually make contact with another person's body, because then that affects their bodily autonomy. Otherwise, if you don't like looking at it, don't look!

Forcing someone else to change for your benefit is not respect, and that includes forced hugs and kisses. A child, in fact any person, is able to express love, emotions and even respect without touching anyone or being touched. 

Y'all Talk Too Slow

I have written many times about accepting my son how he is (here, here and here), but I'll admit, one thing I do not like about Asperger's (and consequently, my husband) is how they talk so slowly and take FOR FREAKING EVER to get to the point of their story. Sometimes it makes me want to die. No really, I have NO PATIENCE. I've been working on it, but I'm a work in progress.

At the very least, I have patience for my son - there is a delay to his responses and he is slow to express himself most days. I have not lost it with him yet, but I fear I will in the future. At some point, he will cease to be cute, small and nice-smelling, with a teeny voice, and turn into a pimply, stinky, gangly teenager, most likely much larger than me. Probably a lot like his father. Will I lose it with him then?

It's a flaw I have in myself. It's a lack of empathy and respect. I know their brains (and mine, as far as I'm concerned) work differently, but I can't always muster those basic things in order to tolerate what I lack patience for. What they have to say is valid, important, insightful, useful. Why can't I just patiently wait for it?

Here are two examples:
http://www.youtube.com/watch?v=VLOJQmsRpag&feature=related

http://www.youtube.com/watch?v=YnoIXREzYmM&feature=related

 This is very much how the Little Man speaks right now: