On Respecting the Privacy of Disabled Children

This week, the parents of a preteen autistic boy took to Twitter to document his meltdown – without his consent, obviously. I will not link to the specific tweets because I don’t want to contribute to his violation. Suffice it to say, I think that there are some ways we should and shouldn’t talk about our children.

Dehumanizing Language is a No

Don’t describe your child in dehumanizing ways. Don’t talk about them being “soulless” or “inhuman”. Don’t tell the world you fear your child as you bully that child. Don’t use one of the most public avenues of social media possible to shine a spotlight on your child’s darkest moments, inviting the whole world to gawk in horror at them. Don’t talk of your child as being “gone” when they are right here.

Empathize

If your boss provoked you to tears, and then started filming you as you cried, how would you feel? If you were in the hospital and soiled yourself, would you want the nurses describing it in great detail on social media later?  How about right during? Would that make you get more upset, and maybe even act out a bit? If someone’s having a meltdown, what they need is quiet safety and understanding. Parents who film their children’s meltdowns are doing so to elicit sympathy and attention for themselves, not to make their child safer or calmer.

Don’t Share Those Videos

They aren’t some deep insight into autism and they aren’t showing you something “brave” that parents should be lauded for bringing our attention to. Those videos are abuse. The person holding the camera is abusing the child during filming. The person who uploads the video is abusing the child again. And everyone who watches and shares those videos is contributing more to that abuse, a third time. It is horrible enough that children are trapped with unsympathetic and abusive parents. Joining in with the parents to heap abuse on their children is wholly unneeded.

Remember the Golden Rule

If you wouldn’t want your boss or partner posting it about you, you probably shouldn’t post it about your kid. And honestly, ask them if they want something on the internet. “Can I share this story you wrote?” will more likely get a yes than “Can I share this humiliating video of you crying, scared and in pain?” If your child says no, or if you think they’d say no, err on the side of not being a terrible parent and don’t share it with the internet.

Have a Support Network

Often parents who engage in this kind of internet over-sharing will say their reason for doing so is that they need support and solidarity. It is your responsibility as a parent to seek out a support network to meet your needs in ways that don’t abuse your child. Period. Whether that means a mental health provider or respite care or hiring a babysitter and going out for a date or with friends or just to have quiet by yourself. Yes, there are lots of things that make that harder, but no, those things don’t excuse blaming your child’s condition for your mistreatment of your child.

To the “Intersectional” Feminists of Skepchick

Earlier this week, the atheist feminist blog site Skepchick put up a post that was ostensibly to/complaining about the people responsible for a recent DDOS attack, titled “A Love Letter to our DDOS Hackers”. However, they used multiple instances of unnecessary ableist language. When called out on it, they doubled down and insisted that none of the language they used is ableist. So, for the sake of argument, let’s pretend they really don’t get it and make it easy to understand.
The Skepchick post contained a text segment and an image with words. The text on the image on the Skepchick site is as follows:

FUUUUUUUUUCK THOSE GUYS.

I got shit to say

and you’re a fucking idiot if you think I can be shut up.

For real.

You are the stupidest mother fucker on earth.

Like, I’m literally impressed you remember to breathe every day

if you think taking down a few blogs

for a couple of days 

is going to do anything

other than prove us right. 

 This is ableist. “Idiot” has a history mirroring that of the term “retard”. It became so pervasive a slur it could no longer be used as a diagnostic label. The word “stupid” is likewise ableist, though so accepted that most people fail to recognize it. But the truly astonishing phrase is “I’m literally impressed you remember to breathe every day.” I have friends with a variety of conditions that cause difficulty breathing, including difficulty “remembering” to breathe. These are life threatening impairments, not a joke, and they have NOTHING to do with a DDOS attack or anti-feminists or whatever the hell these people did that was actually egregious (a point not actually established amongst all the ableism.)

 Above the image there is a block of text trumpeting the social justice creds of Skepchick, which I have to seriously call into question now. Here is that text:

This time of year, like every time of year, we draw a lot of attention to ourselves at the Skepchick Network for being a fierce and outspoken, lady-run blog. We bring up controversial topics like, vaccine awareness and the need for harassment policies at conventions. We talk about the lack of women in STEM and we organize events like the Science Track at Convergence (a.k.a. SkepchickCon) to encourage more women to get involved in those fields. We have the brazen nerve to discuss things like equality for women and minority groups and the highly controversial topic of simply wanting to be treated like a human both online and away from the keyboard. We say hey, you don’t need a god or even a spirit guide to be a great person and to love this one, precious life you have found yourself in. We think life is worth living and learning about without superstition. We support a science based perspective that helps us make decisions on medicine and social science and economics. We think women are funny and valuable. With hot-button topics like the need for safe abortions (a.k.a. reproductive healthcare for women) and the idea that religion is simply unnecessary, we expect and even welcome vocal criticism from people who disagree with us. It’s one reason why we have a blog with a comment section.

But we have set standards. You have to be able to hold a conversation with us. You have to be able to argue your point rationally. You have to be able stand up to us with intelligence and a quality argument. You have to actually add to the conversations being had instead of derailing or just shouting in SUPERCAPSLOCK teenage angst.

And over the years, what we have noticed is that a few of you simply can not do this. These few resort to harassing us on twitter and other social media, they make fake blogs in an attempt to mock us, they email us death and rape threats or tell us to “kill ourselves” or they produce poorly photoshopped images of us doing things they want us to do. We have become their obsession.

Some of our self-proclaimed “critics” have launched multiple year, ongoing harassment campaigns. These people go so far as to make up complete lies about us and contact our employers and patrons with these lies. We have seen these same people post our home addresses online in an attempt to frighten us and hobble our ability to communicate- or sleep well, or to peacefully exist. And every so often, when the photoshopped photos of us and the rape and death threats don’t get our attention to their liking, this same quality of “critic” takes the route of frustrated-cyber-silencer and we see our blog network start to load slow or in the case of last weekend, it goes offline all together in yet another successful Denial of Service attack.

It happens. We expect it.

The thing is this, we actually have feelings about our relationship with these cyber warriors fighting to maintain the status quo. They have a hard time understanding the issues we bring up and their place in the future seems uncertain. We know they are upset and they disagree with us and they want to be heard. We want them to feel special and acknowledged.

And it’s ok.

Really.

In an effort to put what’s wrong with this in words Skepchick editors can hopefully understand, here are their own words, edited to omit ableist (and ageist!) bigotry and suit the topic. You may notice a striking similarity between the above and below, and that is my point. The silencing tactics used against feminists are used against disability advocates. The threats and violence and abuse are too.

This time of year, like every time of year, we draw a lot of attention to ourselves as disabled self-advocates for being fierce and outspoken, and unapologetically disabled. We bring up controversial topics like, Social Security standards that make it financially impossible for many disabled people to marry the person they love and the need for accommodations at conventions. We talk about the lack of disability representation in media and we organize events like Boycott Autism Speaks to encourage more disabled people to get involved in self advocacy. We have the brazen nerve to discuss things like equality for disabled people and the highly controversial topic of simply wanting to be treated like a human both online and away from the keyboard. We say hey, you don’t need a body or mind that functions in the most typical ways to be a great person and to love this one, precious life you have found yourself in. We think life is worth living and learning about without bigotry and ableism. We support a science based perspective that helps us make decisions on medicine and social science and economics. We think disabled people are funny and valuable. With hot-button topics like the the dangers of adult guardianship (a.k.a. healthcare and other life decisions for disabled people) and the idea that ableist language is simply unnecessary, we expect and dread the inevitable endless vocal criticism from people who disagree with us. It’s one reason why we most of us who have a blog with a comment section heavily moderate it.

But we have set standards. You have to be able to hold a conversation with us. You have to be able to argue your point without resorting to ableist slurs. You have to be able stand up to us with integrity and a quality argument. You have to actually add to the conversations being had instead of derailing or just shouting in SUPERCAPSLOCK ageist angst.

And over the years, what we have noticed is that a few of you simply can not do this. These few resort to harassing us on twitter and other social media, they make fake blogs in an attempt to mock us, they email us death and rape threats or tell us to “kill ourselves” or they produce poorly photoshopped images of us doing things they want us to do. We have become their obsession.

Some of our self-proclaimed “critics” have launched multiple year, ongoing harassment campaigns. These people go so far as to make up complete lies about us and contact our employers and patrons with these lies. We have seen these same people post our home addresses online in an attempt to frighten us and hobble our ability to communicate- or sleep well, or to peacefully exist. And every so often, when the photoshopped photos of us and the rape and death threats don’t get our attention to their liking, this same quality of “critic” take other routes to discredit and silence us.

It happens. We expect it.

The thing is this, we actually have feelings about our relationship with these cyber warriors fighting to maintain the status quo. They have a hard time understanding the issues we bring up and their place in the future seems uncertain. We know they are upset and they disagree with us and they want to be heard. They want to feel special and acknowledged.

And it’s not ok.

Really.

 

Are you listening Elyse, Amy and Rebecca?

Occupy Safely: Jail

The Occupy Movement has spread now to over 100 countries, and the total number jailed has now surpassed 3500. There are a few safety tips I guess we should discuss. One thing we all have to remember is this: Some of us are going to get hurt. It is tragic, but it is true. However, there are ways we can reduce the risks. I’ll be dividing this into four main sections: Jail, Police Brutality, Weather Exposure, and Tear Gas. Today let’s talk about jail.

For those of you who have never been to jail: It sucks. You will be cold. You will sit on “benches” made of concrete or cinder block or metal – for hours. You may sit in a police transport vehicle for hours before being booked into a jail. You will be bored, uncomfortable, and quite possibly scared. It may be more than 12 hours between your arrest and your next opportunity to have food, water, or a visit to the bathroom, much less your phone call. (So eat before the raid.)

“Food” will also be the most cost-effective substandard fare your area’s for-profit prison system can legally get away with serving. Your dietary restrictions – including legitimate fatal food allergies – may very well be ignored. There is no vegan alternative, so don’t expect it.

You will almost certainly not have access to your prescription medications, no matter how vital it is you take them at a certain time. This is incredibly important. If you need medication to maintain healthy body functioning, jail may be a potentially fatal risk for you.

You may be vaccinated against your will. In Florida, for example, all inmates are required to receive a Tuberculosis vaccine. Exemptions for health conditions that result in lowered immunity are not provided. If you refuse the vaccination, you will be placed in solitary confinement until you are released from jail. So again, if you have lowered immunity or cannot receive a jail-administered vaccination for other health reasons (like you’re on the organ transplant waiting list) try not to get arrested.

If you are female, you will likely be subjected to a urine test (possibly while someone watches you pee: more on this later) to determine if you are pregnant. If you are pregnant, you may be moved to another jail or to another section within the jail. The urine test may also be used to determine if you are guilty of “internal possession” (having evidence of prior drug use in your urine) which is a crime in some states like Hawaii.  Please be aware many perfectly legal substances such as poppy seed muffins and Ibuprofin can result in false positives for drug use (heroin and marijuana, respectively) so check to see if there are internal possession laws in your state. If you are falsely accused of a drug possession charge, get an attorney not a public defender.

Back to people watching you pee though: It’s going to happen. There is no such thing as “privacy” in jail. Your body will be examined and touched by strangers (guards) and there are no guarantees your cell mate or mates will be fellow protesters. If you’re there long enough, eventually you’ll need to defecate and for that as well you will not have privacy. If this is something you don’t think you’ll be able to handle for any reason, you may want to also consider avoiding arrest.

If you’ve decided you can be arrested in defense of your encampment (or for “failing to disperse” or whatever charge they come up with) plan ahead.

• Eat and use the bathroom before an expected raid or camp eviction.
• Leave your cell phone with a trusted fellow Occupier or someone who won’t be present when the police arrive. Alternatively, make sure you put a passcode on your phone so the police can’t delete videos and photos of arrests or police brutality. (It happens.)
• Write the phone number for the National Lawyers Guild office in your city on your arm in permanent marker.
• Whenever possible, have a non-arrested Occupy member get a list of the names and birthdates of each arrested person, and keep your Facebook and Twitter pages updated with their status. (For this using simply numbers is fine like “12 arrested last night, 7 released already, 4 getting out on bail later today, but one being held on possession.”)
• Leave non-emergency prescription medications at home or with a fellow Occupier and for everyone’s sake please keep illegal drugs out of the encampments.

All of these points are made to encourage you to Occupy Safely, not to discourage you from Occupying. Our first amendment rights to freedom of the press, of speech, of assembly and the right to bring grievances to our government are all clearly under attack and we will not ensure by failing to fight for them.