Social Media and Privacy for People with Disabilities

In social media, I see a lot of things that make me cringe, get angry and sad.

One of those things is how some parents of disabled people – mostly children, but also adults – disrespect their privacy, giving details of every aspect of the disability, apparently not having a second thought about how their children might feel about that.

Social Networking and Privacy for People with Disabilities

Text reads: The truth is, being disabled, being Autistic, and having such moments broadcasted for the whole world can, and will affect how we are treated, and the expectations about us. awnnetwork.org (background is a dark salmon color)

Parents of Autistic children seem to be the most eager to expose their children’s most difficult moments.

Why they do this is beyond my ability to understand. They insist that their love is unwavering, that they want the children to have a full and happy life, that they are just “being realistic”.

Being realistic is good but Autistic kids’ difficult moments shouldn’t be used to show “the real life of parents”. Those moments should be kept private. Our humanity, our dignity should not be conditional to how the world will see us through videos, pictures and comments from such parents.

The truth is, being disabled, being Autistic, and having such moments broadcasted for the whole world can, and will affect how we are treated, and the expectations about us.

Meltdowns, bathroom issues, nothing seems to be out of bounds. The same parents would be outraged if someone else did this to their children, as if the most important is WHO disrespects the children, and not the fact that the children’s privacy is being violated.

Read it again: some people don’t have a problem with violating children’s privacy, as long as a PARENT does that.

Recently, I saw a number of posts talking about how some Autistic adults “suffer” so much because they are “still wearing diapers”. The same posts usually ask where those Autistic adults are.

The answer is, they are everywhere and they will not come out to satisfy this fixation on who/where/how people go to the bathroom.

This is disrespectful. A person’s humanity is not dependent on their bathroom habits.

There is a trend. Some parents post about their children having meltdowns, they write about how their children have trouble in school, they write about “violent outbursts”. Sometimes they post pictures and videos of these moments and the name of the child. It is not surprising, even though it is disheartening, that the same parents would keep violating their children’s privacy by relating their bathroom history in detail. Some complain about having to “change the diapers of adult children” and how terrible this is.

Right. They think that changing diapers of an adult is a horrible thing but don’t care about exposing their children’s privacy in exchange for sympathetic comments,

Let’s be clear:
Many adults are incontinent and rely on the extra protection every day.
There are many reasons why a person might be incontinent.
Many children learn how to use the toilet later in life.
Some children never do, and this does not diminish their worth.
Some people will smear feces, most grow out of it. The ones who don’t still deserve respect.

I also saw excuses like: “being incontinent is not ideal”.

No, it is not.
You know what else is not ideal?

Disabled students in seclusion
Disabled students being restrained
Disabled people being shocked
Disabled kids being arrested for no reason

None of this is ideal. They are, in fact, criminal.

What else is not ideal?

Martyr parents
Autism Speaks
ABA
Segregation

None of this is ideal either. Some of it can be classified as criminal.

And I haven’t even begun to list the “not ideal” things and people around us everyday, people who can influence our lives through policies and political maneuvers.

Want to “fix” what is not ideal? Begin with the criminal, or possibly criminal, acts, organizations and interventions. Leave the bathroom habits of people you don’t know alone. And for fuck sake, stop violating your own children’s privacy.

Privacy is a right.
Respecting people’s privacy makes being disabled-in-public safer.
Autism is also a disability and I expect you to want safe spaces for your own child.

And if you don’t care about the privacy and rights of other people, back off.
Where/how people go to the bathroom is none of your business.