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.

15 thoughts on “Social Media and Privacy for People with Disabilities”

  1. I get this. Your opinion matters and is valid. I am not a person on the spectrum. I am the mother of one and have been and continue to be the teacher of many children with autism. It’s clique, but knowledge really is power. And some of this power comes from sharing our experiences and in turn being able to identify with the experiences of others. I believe that my sons journey is inspiring. I believe that his hiccups (meltdown’s) are a part of him. I believe that showing more than just the best allows others to see the many faceted sides of a child with ASD. There are glories and horrible moments. Like the rest of us, typical and atypical, autistic children are whole and real. I love my child and I love the support I receive from the parents of other children on the spectrum when i reach out. As my child ages I am increasingly discrete about what I share. As with everything else, it’s complicated . Thank you for sharing and allowing me to share.

    1. If you really HAVE TO share very private things about your child then do so anonymously. It doesn’t matter how much easier life gets for you when you share – you do not have the right to. I have been trying to make my own mother understand this my entire life. My life belongs to me. My meltdowns, anxiety, breakdowns, shutdowns, all of my issues belong to me. They are not hers to discuss with anybody. If she really needs help she can talk to a professional who is bound by confidentiality. Everybody who really needs help can find professional people to get help. It is nobody’s right to make another person’s private issues public. There is no excuse. There is no reason. Love your child? Protect their privacy.

      1. I feel like I can see both sides of this issue. Telling strangers how sick you are of caring for a person on the spectrum is way out of bounds. Talking to a friend or in a support group that you get frustrated sometimes, that you hurt for your loved one, that you’re human and you’ve reached your breaking point? That’s different. There is a difference between gossip and reaching for support. Sometimes just the knowledge that you and your person are not alone, that other people have felt the same, that maybe someone else lived through the same issues and here’s what helped. This is essential I’m on the spectrum and I am secure in the knowledge that my mother loves me more than her own life. I also know that she got angry with me, that I scared her sometimes, that she cried herself to sleep over something I had said or done. If she hadn’t talked about me with her friends, if she hadn’t had the comforts listed above, it might have become violent between us and I might have lost my very best friend. Privacy is a human right and it should be protected by everyone for everyone but I refuse to make someone feel bad about reaching out and sharing what they’re going through. A good rule of thumb might be to think “Would I want people to know this if it were about me.” If your child or adult communicates, ask them first etc etc. But please don’t cut off this avenue of support for those who truly need it to stay sane. That’s not right either.

  2. I am so mad at parents sharing videos of private moments of their kids only because they are trying to show how dificult is their life. Stop crying parents and stop making bad propaganda of their kids.
    I am a Mom and I am pro-my-son.

  3. I agree, with regards to agencies demanding personal and private information about those we take care of.
    What rights do we, the care givers, rep payee, PSW have to not answer the personal questions in order to get services and/or monies that these people need?

    I was just asked about my clients sexual needs, and told I had to give an answer – OMG! It’s none of my business and none of yours!!!!

    As for parents, friends, neighbors talking – yea it’s very disrespectful….. but talking (gossiping) is what people do. I do not know what can be done about it. People love to get attention and sympathy, or have a ‘story’ to tell.

  4. Thank you, Amy. This needed to be said, and especially from a woman living with autism. Now let’s see if the ableist “helping professions” are going to throw their power and prestige behind this message. . .

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  11. I hated it when I’d get upset and scared, then people would try to video me and send that video to everyone. I am not an animal in the zoo. I don’t exist for people to gawp at. All that did would make me feel even worse and put me in a state where I couldn’t do anything except sit in a heap and cry. When they stopped doing that, our relationships improved an everything basically just got a whole lot better. There is good no reason for parents to film their scared, sad and confused children and show it to everyone. I can’t express the shame it makes us feel. People start viewing you as that screwed up child with problems, that child you have to be so careful and sensitive around because they have problems, they can’t see anything beyond that, every little thing you do is a triumph over your terrible problems and it’s so amazing how you’ve gotten this far with all your problems.

  12. My ex-father in law feels the need to continually brand my son as ‘My autistic grandson’ in his social media posts. It’s almost propagandaish. I feel comfortable about this, and I also don’t think it’s safe for my son to be branded as such for the whole www to see, but would i be overreacting for asking him to please stop?

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