Wednesday, May 7, 2014

Real People

Some will accuse me of perseverating or refusing to let go (of something that wasn't even exactly atoned for but whatever). I really don't care, because clearly this is something people don't yet understand.

Under. No. Circumstances. Say. Some. People. Aren't. Human. EVER. DO NOT DO THIS.

Others will declare I am being too literal, but the history of these declarations, particularly for Autistic people, demands I be literal.

It's not just the changeling legends of old. It's how they live on in systemic dehumanizsation of Autistics & other disabled folks, a legacy we will never escape without radical changes.

People will say "well I hate people, so be glad you aren't one," but I am so very not being even a little facetious right now. This is not a topic for levity at this moment.

People deciding we aren't human gets us hurt, it gets us killed, it does tremendous emotional damage in addition to physical. It makes self loathing just a little bit easier.

I knew I wasn't a real person by kindergarten. Real people don't need to stand up sit down stand up sit down stand up sit down good girl MnM. Real people's names aren't at the top of a behavior star chart when everyone else is mean and scary and in their personal space (so much for ABC, eh?). Real people are allowed to laugh and to cry.

Real people are allowed opinions, even unpopular ones. Real people's socks & underwear aren't scrutinized daily to make sure they aren't inside out. Real people don't have everything they love leveraged to make them perform.

And then I was declared a good facsimile of a real person-but that was no better. Real people are allowed bad days; facsimiles are not. Real people can have quirks and odd habits. Real people can say "no".

Even today the changeling & demonic possession myths live on: real people aren't almost drowned in exorcisms (the first murder of an Autistic I followed closely? The boy was suffocated by a minister kneeling on his chest 'casting out demons'. That makes the holy water drowning look tame). Real people aren't scared within an inch of their lives to "bring you back to me". There are lines one does not cross when dealing with real people, lines that are trampled over when it's just us.

Because we aren't real people, & don't even get the rights of them when we pretend our damnedest.

This is the history--and the present--you dredge up for our community when you say someone, anyone, "isn't human". It's a history where people start from that assumption & where anything is justified to change that. And nonpeople are always scrutinized so closely we're never going to meet the moving standard.

It isn't funny, it isn't cute, and it isn't acceptable. Think, really think, before you write.


Vlad Drăculea said...

Well said!!!!!! And even if this were perseveration, this is a really, really, *really good* thing to perseverate on: society needs to hear this message again and again and again till it finally sticks!

ratherunique said...

Keep on perseverating!

That blogger and her community are trying to sweep this under the rug.

They need to know that we are human. Period. Not mostly human, not kind of human, not different human, not quirky human. Human. Period, end of discussion. As in as human as they, with the same rights as they.

We should not have to defend our human rights to people time and time again. Especially to a supposed ally. I hope her and her 100k followers read these posts daily and give a real apology. Like "I'm sorry this thought ever crossed my selfish mind".

I'm sick of privileged people sharing their selfish, antisocial angry thoughts for purposes of creating community empathy for themselves. If you think a sick thought like "f*ck autism".....yeah you should feel bad about it. Even more important than feeling bad about it, you should let that thought go and never voice it. You don't deserve empathy for thinking negative things.

adiaryofamom said...

Kassiane, Thank you for this. For continuing to talk about something so horrific and traumatic for the sake of educating those like me who may try to get it but sometimes, clearly, need to be reminded of the scope of the ramifications of badly chosen words, no matter their intent. When I told my NT friend that she “wasn't human if ..,” I did not make the connection to the dehumanization of others. As I said to you in an earlier conversation, you might think me terribly dense for not having seen that, but the truth is that I didn’t. I’m grateful to you for explaining that to me and, here, to others.

To ratherunique, While I cannot argue that many of my readers urged me to “move on” when I continued to talk about how badly I’d screwed up, I would argue that I did not sweep it under the rug. I wrote five posts about what had happened in an ongoing attempt to explain to the readers who wanted me to “just move on,” or, as some put it, “stand my ground” why I wasn’t going to do that. In one such post, I wrote, “ to those who imply that I should "stand my ground," and not be swayed by those who were hurt and offended by my words, I pose a question…If I were to tell you that (my daughter) Brooke came to me one day and said, "Mama, what you wrote on your blog hurt me. While you have every right to your feelings about me and my life and my struggles, the way in which you chose to express those feelings was hurtful to me and to those like me," would you tell me to "stand my ground"? Would you tell me not to be swayed by her opinion because she doesn't know what I live and feel as her mother?

No matter how big this community may have recently gotten, I feel pretty confident saying that you would not tell me that. If you would, I dare say that you might be in the wrong place. Autistic people were hurt by my words about autism. Every one of those people is someone else's Brooke - ten, twenty, thirty years hence. I fight every day for their right to be heard and to drive the conversation about themselves. I can think of no greater hypocrisy than refusing to listen when they're telling me how the way in which I chose to express myself made them feel.
I protest organizations who will not listen to those whom they claim to support. I will not be guilty of the same.”
As for an apology, I’m not sure if you saw the following, but this an excerpt of what I wrote …
“I am not apologizing for my imperfect journey. We're all on one. But I am apologizing, sincerely and deeply, for a misstep which inadvertently, yet no less truthfully, contributed to the dehumanization of those whose humanity I have made it my life's work to defend.

I am not apologizing and will not apologize for listening to those people when they tell me that what I am doing is harming them.

To those who were hurt by my words, I am deeply sorry. I get it. I hear you. And I thank you for putting yourselves on the line day after day, calling out the same missteps again and again and yet again in the name of what is right. Sadly, I don't doubt that I'll screw up again, but I will keep trying.

And to my daughter, whom I so firmly believe will be able to read this all one day if she so chooses --

I made mistakes, kiddo. Big ones, small ones, and everything in between. I'm so sorry for every damned one of them. I never meant to hurt you. I trust that you know that. But there's more to it, sweet girl. Apologizing when we screw up is important, but it's hollow if we don't look for the lessons, find the opportunities to grow, and figure out how to do it better as we move along the path. I promise you I will never stop doing all three. For you, for your sister, for all of us. And I promise too that I'll never, ever stop listening.” (...)

adiaryofamom said...

cont ..

Although I fear that I’ve gone WAY over any acceptable word count for a comment, I want to share one more thing that I wrote this week. (Kassiane, I apologize for taking up so much space. If you need to give me the proverbial hook, not that it would matter, but I clearly understand.)

“I need to say something. I need to say thank you. To those of you who understood why I wouldn’t — couldn’t — simply “move on” from the events of the past few days. Why it was — and remains — so desperately necessary for me not just to apologize to those who were hurt by my words, but to talk about why that matters as much as it does on as big a platform as I’d said the words in the first place.
To those of you who scoffed at first, who told me it was enough and pleaded with me to move on then came back to say that you now understood why I couldn’t, by God, thank you. To those of you who tried to respectfully guide others toward understanding the same, thank you. To those who stood up for yourselves in all of this, who said, “This isn’t okay,” thank you. To those of you to whom it is still confounding, thank you for sticking around. I hope that eventually it will become clear. Thank you to Jennifer and Kimberly and Chris, and all of the other autistic activists who stuck in there through all of it, taking it all in, no matter how hurtful it got, to make us all better at this. And thank you to my friend, Conner, whose words cut straight to my soul every time, who said, “That is my mom’s promise to me. She will always listen to me. Mom can hear me when I use words and she can even hear me when words do not come. I need her to hear me when words don’t come because sometimes I have loud pain inside me and no words to come. Listen then too.” That, in the end, was what all of this was always about. Thank you for listening with me.”
I am here. I may not always comment, but I am reading and learning and evolving and I continue to be in your debt for educating me for the sake of my daughter and the creation of a far better, more loving world for all of us to share.

Again, I’m sorry for the hurt and grateful for the education (again.)

Jess (a diary of a mom)

Neurodivergent K said...


That is not what I expected/feared, Jess. It is more words but also more heart. So. Ok. I need to recalibrate.

(pattern recognition: accurate most of the time. Like really most of the time. When the pattern changes I'm all like WAIT WHAT HOW??)

My calibration is kind of looking like blinking with no language working well.

Because that's not the pattern I'm used to. Your comment is the kind of thing that comes from a pattern that I'd much rather see.

I read & honor your apology & your words of love for Brooke & look forward to a future with a new pattern of learning and listening to recognize & find familiar. That'll be a good pattern, a better world.

ratherunique said...


I've read all your posts on the incident and the numerous comments on your FB page. When I say you've swept this under the rug, I mean you've swept the meaning of what you said under the rug.

I feel as if you said that I, as an Autistic person, am a burden on you and your life. A burden that you lovingly choose to carry rather than cast off, but a burden nonetheless.

I feel as if you love and care for Autistics, but you don't necessarily consider us equally human to you. If you did, you would have thought twice about sharing your negative thought.

Let me try to explain my anger to you with an experience. I went to my Aunt's house for Easter. My sister helps her in the kitchen. My offers to help with food preparation are rejected every time by the way. This is despite the fact that I can cook. I do it for myself all the time.

Anyhow, my aunt dropped a plate of hot lasagna on my sister. She screamed in pain and glass shattered. Uncaring, emotionless golem that I apparantly am, I got out of my seat to check on my sister. I was told to "Go sit down" by her husband. If I were a capable human, I would be a brother checking on his injured sister. But I'm not. I'm an eternal child amongst them. A 35 year old 6'7" 250 lb preteen. That's all I'll ever be to them, despite how many times I prove myself otherwise. Because I giggle at my own jokes, converse with myself at times, I can't keep up with conversations involving multiple people and I stim.

They love me, they care for me, they accept me, they certainly don't want me to not exist. But I'll never be one of them. I'll never be a peer. Never be equal. I may sit at the table, they're nice enough to ask me what I may want from time to time, but not at my whim.

That's a piece of my world. I am treated like this in all walks of life work, etc (I've worked most my life since I was 16, have held current job for 7 years).

But I am capable, I am equal. I bring value to life. I have the mind that I was meant to have and wherever I am is where I belong.

So I have to be skeptical of you after what you published. Because I do not want to be someone you choose to advocate for out of the kindness of your heart. I want to be someone who belongs next to you, and whose thoughts deeds successes and mistakes have the same weight as your own.

SaveRyanWhite PartD said...

So much truth and wisdom, and emotion here, in the initial post and the comments as well. Though new (just a few years in) to having an understanding and a personal awareness of being autistic, I've seen the horror of how dehumanizing a person or a group of people can literally cost them their lives. Words matter, and deeds matter.

So as usual, when I read K's words about this, mind blown. But having also read Jess' responses not long ago, my mind was also blown. Because it is a rare find that someone will so openly and earnestly not only own, but regret their screw up.

When I read the first offending post, I was so taken aback, hurt, and horrified that I was rendered nonspeaking and in tears. Because aside from how awful the words themselves were, the source was so unexpected that I was completely in shock. The words cannot be erased.

But reading through the posts that followed, my bullcrap radar did not go off. It seemed, and seems, heartfelt and sincere, so much so that I felt nearly moved to tears yet again by such a raw, real outpouring of emotion and such a genuine sense of anguish for the hurt caused as well as the profound love for Brooke.

Rather unique makes strong points too. He may very well be right. But I wonder if perhaps what appears to be infantilization on Jess' part may be her way of interacting period, not just with autistics. I hear where he's coming from.

But I know that at least for me, becoming a mom nearly a decade ago really changed how I interacted and communicated with people. Many times, unbeknownst to me, I insulted people, even people whom I revere and deeply admire, respect, and view as equals (and in certain cases, as personal role models) because I unknowingly slipped into "mom mode" in my dealings with them.

I have read a lot of Jess' posts in the last and I've seen her seemingly slide into this kind of familiarity with her readers at times--including her non-autistic parent readers. No, I have never seen her degrade them intentionally or unintentionally the way she did the autistic community with the hurtful comments made several days ago. And I cannot speak with authority about her motives.

But I wonder if, while the points that rather unique made are usually valid and unfortunately very often the reality for many, are not what they appear to be in this case.

I am not a gambling person, but if I was, I would say that I think despite these horrific words, it seems that everything else before and after that indicates a sense of equal footing more than benevolent pity. On the basis of that assumption, I've chosen to forgive her.

It is not a crime to be cautious and to take a "wait and see" approach. I don't fault anyone for that. I respect it. Completely. Because at least though you are skeptical, you are still checking things out rather than writing her off completely. So if she is genuine, as I believe and hope her to be, you will be able to see that firsthand over time.

Morénike said...

Note to self...make sure you are logged isn't the right Google account when you are posting. That last comment was from me (Morénike). Oops.

jess said...

I can't tell you how much that means to me. Thank you. Truly.

jess said...


Thank you for taking the time to respond and for sharing that story, no matter how hard it must be to recount. Given that background, and the fact that it's so damned common an attitude, no matter how horrifying, I understand your skepticism.

As I tried to explain in the post, what I was actually expressing was anger that my daughter hurts and struggles with things (many or most of which are, in actuality, very much NOT autism (anxiety, epilepsy, etc - NOT autism) but I fell into the trap of wrongly conflating her struggles with those things with her neurology. It was wrong. Extremely wrong. And I can't possibly be more sorry for having done it.

I kept that conversation going on diary because others didn't seem to understand why I was acknowledging how wrong - and hurtful - it was because I didn't want it to be a lesson for me alone, but also for those who didn't yet get what I could now see.

All of that said, I again get your skepticism and can only hope to earn your trust through my actions as we move forward.

Thanks again for taking the time to engage.


jess said...

Oh, Morenike (please forgive me as my phone won't make the accent), I am now the one in tears. Thank you, from the bottom of my heart. That's all I can manage, and the words aren't nearly big enough. Just ... thank you.



Myra da Whovian said...

Hi! I'm doing a paper in school about Autism since I have Asperger's (although technically due to the DSM-V thing, Asperger's doesn't exist anymore, just a single autism spectrum disorder thing). I was wondering: do you think any therapy should be used on Autistics? I hear a ton about ABA and how horrible it is, but what would be an effective way? I have never had any therapy for Asperger's so I wouldn't know. Thank you :)

MamaMaria said...

This message needs to be heard. As the mom of a 12 year old autistic boy with a delightful and wry way of being, I cherish his unique attributes. We are all human. None have cornered the market on human-ness, no matter what the APA says. Each brings a unique perspective and contribution to this world, and if God didn't think it was needed right here, right now, He would not have made so many unique people! How dare ANYONE ever suggest that you or anyone else who is different is subhuman or less than human!

I am doing my dissertation on two subjects: The experience of parents of autistic children as they share their Catholic faith (those of us in this situation KNOW how hard that is with the existing structure of the church) and a separate study examining the lived experience of autistic adults, both verbal AND non-verbal, as they see themselves, their world and their relationship with the Spiritual Element and Creator (aka, God).

If you know of anyone who would like to add their voice to my study as I attempt to explain the autistic community and culture to my neurotypical (and sometimes equally disabled by it) world, please contact me at mtaheny1atgmaildotcom. I will begin both studies in September, but the one for the autistic experience will extend to May of 2015.

Keep speaking your mind. I think the world is beginning to hear you!

Jackie Yoshi said...

Your post had me thinking about how recently I was thrown off yet another disability board for being too negative. It reminded of the times I was told in school to be happy all the time. Of course, that led to the extreme opposite of me becoming Goth and liking Marilyn Manson.

It seems no one wants to hear that we have problems, and they are significant, because then people might have to actually do something about them. Or it's for our own good that we act happy all the time, like we can be restricted only one emotion while people without mental disabilities have all different emotions they can have.

When you mentioned having things loved leveraged to make you perform. I was thinking of what I think might be a strange idea, but what if there was an episode of Criminal Minds where someone with a mental illness did all the things that were done to them as revenge on those who did those things to them. I don't know if specifying them as teachers would be too controversial, but the idea would be they'd end up acting stereotypically mentally disabled and would know how it feels to be dehumanized like that. It'd also be interesting to see what Reid would think about it, because he has Asperger's Syndrome. I don't know whether to suggest this on the show's Facebook page or not, as it could backfire and become about how mentally disabled people are mean ect. Although the idea that the unsub acted out because of years of abuse from school and society over their mental disability might cause people to empathize more with how we're taught to constantly watch and restrict our behavior.

I really enjoyed your post what you said about people seeing us as non-human is sadly true. I hope that things get better, and I know with brave people like you speaking out they will.

Ettina said...

We are human.

And even if we weren't, we shouldn't be abused. My cat is deserving of more respect than many people give autistic children.

Humanity isn't some special club that you get to kick people out of. It's just a species.