Tuesday, December 20, 2016

No! It Doesn't Take a "Special Person"

This is a piece I started writing in August or September of 2015 and never published. I decided  it is worthy of publishing over a year after I wrote it, typical for me :) 


I'm extremely tired of the "special person" for "special needs" people trope. Sick.of.it.

It is
Dangerous
Bigoted
Hurtful
Condescending

A while back I sat in a meeting with some parents for booster club I joined at my kids' school (which I have now left) and the "special needs" teachers came up (for the record I no longer use the term *special needs*). 

What followed after that was not anything remotely out of the ordinary when these topics come up in conversations,which was how special those teachers were and how sorry they felt for them.

There were more things said, but I stopped being able to hear them because all I could hear was my heart beating in my ears. I was seeing red. The conversation was gross. I couldn't sit and listen to it anymore, I had to say something. I started out with "This conversation is making me extremely uncomfortable can we please stop, you're talking about kids like my son"

After a long awkward silence they started apologizing, but no one changed the subject. One of the moms hugged me, she hugged me because she felt sorry for me because I have one of *those* kids. (and hugging is yuck and gross for me too, but that's a whole 'nother post) 

Now, I can take a certain level of ableism due to ignorance, but I can not take someone feeling sorry for me because my kid is disabled. Having a child with a disability does not make me a victim. His disability is not something he does to me. 

Having a child with a disability also doesn't make me a special person, just like my husband isn't a special person for marrying me.

The other mother proceeded to tell me how it takes special people to *put up with*  kids like *those* and how she knows because she has some of *those* kids. I stopped her and said "No it doesn't take special people, it takes not asshole type people. It takes decent and patient people, but not SPECIAL people"

I shared a bit of how my own son was mistreated in another school district, hoping that I could help humanize *those kids* to them, since they knew him from the school. 

But the response I got to that was :


Image reads the "special person" trope is dangerous.
It allows people to make excuses and justify acts
of abuse on disabled kids/people
because only special people
want to deal with us.
this is on a textured light blue background
"Well, I bet no kid in XYZ school is mistreated". Which I just kinda snickered at her smugness because she obviously has no idea how kids are legally mistreated every day in school especially in special education classrooms. And she must not understand that *those* children are exposed to things that are quite abusive and damaging in the name of "therapy" every single day. She must not be aware of how many of those oh-so-special people she speaks of kills one of *those* kids.

That is why the "special person" trope is dangerous. It allows people to make excuses and justify acts of abuse on disabled kids/people because only special people want to deal with us. If we weren't so difficult more not-so-special people could tolerate us and then maybe we'd be treated like real human beings and stuff. 


Tuesday, August 2, 2016

Remembering Sandy

I have been absent from the blog-o-sphere since January because my life has been turned upside down, inside out and any other uncomfortable way you can think of it turning.

I wouldn't even be writing here right now if it wasn't for the untimely death of one of my very best friends, who was also a fierce disability advocate and ally to the Autistic & Disability communities:  

Sandy Kinnamon.

You may have heard of her.

Maybe you interacted with her online.

Maybe you even had a face to face relationship with Sandy,


Maybe she was on your side.

Maybe she wasn't.

However you knew her, you knew she was fierce and devoted. 



Image via Autism Women's NetworkImage has a photo of a black girl blowing bubbles at left, with the AWN logo, and at right on a pink background, black text: "Autism acceptance means... 'Not changing what fundamentally makes my child who she is. It means respecting her stims, it means respecting her sensory needs,it means presuming that my child is as competent as the next. It means giving her the space and accommodations to succeed with her unique neurology.' - Sandy Kinnamon"

Sandy's intenseness is what drew me to her. I like when I can feel how committed someone is to something. There was absolutely no mistaking Sandy was serious about autism acceptance and disability advocacy. I became official friends with her  mid-late 2013. We clicked immediately.
Sandy and I grew very very close and although we never met face to face, we were best friends. 

I don't have any messages left from her because all of them got deleted, but there are little reminders all over my Facebook... ones like this: 
image is a screencapture of a comments section on a photo it reads
Sandy Kinnamon Kimberly Faith is just beautiful inside and out. She has been a most close friend and confidant. She has been there through alot lately, with me. If I could have her close to me, I'd give just about anything. Kim...I love you like a sister, you are my sister, in my eyes. You're an incredible human being, a once in a lifetime... Kimberly Faith Sandy the same can be said about you dear.  If I were closer I'd be there for you in person... in a heartbeat.Sandy Kinnamon I know. ..There is no doubt in my mind. It has meant everything. You have been my lifeline, literally.


Sandy cared.
She was trust worthy.

She was loving.
Sandy was protective.

Sandy was my introduction to many of the activists I call my very close friends today. This is the same group of activists that jumped to action upon finding out about her disappearance (just some FYI : that was 3 days AFTER she disappeared). This particular group of friends are people I feel I am truly lucky to have in my life and that does include Sandy.

Sandy made sure you knew exactly how she felt about you. She was not afraid to tell you she loved you. She always knew exactly what to say and how to say it...



If I was upset and hating on someone or something, Sandy hated on it/them with me. She never tried to tell me I was wrong for the feelings I was having or that I was being unfair. She never played devil's advocate. She never told me to look on the bright side.

She stood with me through all of my storms.

Then, when I was ready to forgive someone or at least not hate them so much, she was right there with me too.

She was my person for a very long time.

She was, to me, much like Meredith was for Owen on Grey's Anatomy this past season.

Meredith: I made a promise to Cristina that I wouldn't let you go dark and twisty, that I'd be your person if you needed one.
Owen: I don't want to talk.
Meredith: Okay. You don't have to. But just tell me--Do we hate him?
Owen (through tears) : We hate him.
Meredith: Okay, then. We hate him.

Sandy told me to always trust my instinct, she said I have a good one. I was terrible about second guessing myself and still kind of am. But, I have really been actively practicing not dismissing myself.

That is part of the reason why when I heard of her disappearance I felt much of the way that my friend, Beth, feels too and I just can't dismiss that. You can read about that HERE.

I wish I knew what happened to my friend. 
I wish I knew what happened in her last moments. I can speculate, but that isn't giving me any answers. 


I wish I could know for a fact that she wasn't hurting and lonely in her last moments, but I'm pretty sure she was.

I wish I knew:

Everything.

But, I know I probably never will.



Thursday, January 7, 2016

Throwing Disabled People Under the Bus Won't #StopGunViolence



When the President announced his executive order on gun control he threw those of us with psychiatric and developmental disabilities under the bus. He further stigmatized an already highly stigmatized group of people. Even though the President was correct when he noted that people with mental health conditions are more likely to be victims than to actually commit acts of violence, his actions through his executive order send a much different message.


He conflated the inability to take care of one's finances with the presumption of incapacity (referring to part about those who have a rep. payee going into the FBI's NICS). He is putting certain exemptions in to HIPPA law that will leave psychiatric patients without privacy. The precedent this creates is a dangerous one.


We need to have conversations about mental healthcare, but not at the same time we are having conversations surrounding gun violence. These two things are mutually exclusive of one another.


This isn't about the gun control issue (which ever way you think about it), this is about Disabled people's civil rights. It's about stereotypes and scapegoats. It's about our President creating more fear surrounding those with psych and developmental disabilities.


This can not be allowed to happen.


I'm going to be honest here, I'm scared for all the things that could come from this and you should be, too. 

Wednesday, January 6, 2016

Getting Permission Is Not Enough

Let's talk about that time I made a bad parenting choice...

Okay, well let's talk about one of the times I made a bad parenting choice! (because there have been many!) I'm not immune from being human and making mistakes is part of every human's experience. I'm full of humility. I'm also full of guilt, just like a lot of parents.

My oldest child will turn 18 in March, so it pretty much goes without saying I've probably screwed up a lot! I know the things I know and believe the way I do because of the experiences in my life that have shaped me... especially my mistakes. 


I just got through reading an article on Ollibean titled Six Questions Before Publishing About Children and it triggered some thoughts.

I have always thought of myself as a pretty thoughtful person. I've always thought of myself as a parent who was protective of her children (and I am). I'm pretty much known for telling parents to put their kids' dignity before their own need for support. I am a huge advocate for respecting children's right to privacy. I believe it is a parent's job to protect their children from the world.

But, I have also been a parent who has failed at those things and most of the time through good intentions. I think it would make me a hypocrite if I didn't point out my own failings.


One of the things we tend to ask parents when they start to share details about their children online  is "Did you get permission?"

And most will say yes.

HOWEVER

Getting permission isn't enough, which the Ollibean post goes on to explain:

This piece of the article is super important, and it is one that a lot of parents can't seem to wrap their head around and honestly it didn't occur to me until something happened to my son 2 yrs ago. 


6. Could the information I am publishing be harmful to my child in five years? Fifty years?

If the answer is “No”, then publish it.

The most realistic answer is “I don’t know.”

In Feb. of 2014 an article that my son and I had agreed to interview for was published in our state's largest newspaper. The topic was on how special education in our state was failing students.  My son wanted to do it and he gave permission to be interviewed and written about. I wrote a bit about it HERE (which I had previously published and then unpublished. THEN... I republished with edits when I started writing this).

Anyhow the article ended up being absolutely terrible! (and I refuse to link to the article) The article was nothing like the draft she had shown me and she even put words in my mouth. She made my son sound like a lost cause and even worse didn't put in the things about him being bullied by adults that she had promised him she would do.

The very worst thing she wrote was this "If _________ had been identified in kindergarten, his mother says, he might be eyeing colleges right now or choosing a career.Instead, “I like music,” ____ said recently of his post-education plans. “Maybe I could be in a band.”
Mom never said anything of the sort... that was something she created. I get it, the media sucks and I learned my lesson, but that is also not my point.

I failed to protect my son. I can blame the reporter all day long, and she absolutely had a lot to do with it, but at the end of the day, ultimately I failed at my job to protect him.

When he finally read the article he was so so so upset. He begged me to have it removed and I tried. I wrote a lengthy letter and Gannet refused to remove the article or print a retraction, even though I sent them tons of proof that most of the article was an exaggeration.

So, driven by my fury, I took to my laptop and started banging out his story, the full story, with his approval. I wanted him to get vindication! I had good intentions!  He read and approved every thing I wrote. It was 4 very long blog articles.

They probably stayed up on my blog for a few days before I reverted them back to drafts.

The reason I did that was, I was doing what I advocated against. I was telling his story and putting his information out there to be used however someone else wanted to use it. Even though he approved of it, as a parent I felt I needed to protect him. Just like he didn't understand the ramifications the newspaper article could have or exactly how far it would reach (even though I explained it to him), he probably did not understand exactly how blog posts could be used either.

So, even if you get permission from your child, that still doesn't mean you should publish it. It doesn't mean your child understands the enormousness of the internet or that the internet is forever. They don't understand that in 5 yrs someone else may find that information and use it against them.. and they certainly do not know how they will feel about the things they give you permission to share today 5 yrs from now. 

Image reads: It isn't just a matter of getting permission, 
it's a matter of protecting your child's dignity and humanity above all else. 
No amount of permission from your child to share information about them 
can supersede the fact that parents are the ones 
charged with protecting their children. Background is a bluish color


It isn't just a matter of getting permission, it's a matter of protecting your child's dignity and humanity above all else. No amount of permission from your child to share information about them can supersede the fact that parents are the ones charged with protecting their children.


Telling me you got permission from your child to share something doesn't change my mind when I tell you that you are publicly violating your children's right to privacy and dignity. And I get to tell you that because I've been there and I've called my own self out on it.

Monday, January 4, 2016

Repost : Join PACLA as we pledge to #BoycottTheMighty! #CrippingTheMighty

Image: Two blue outlined speech bubbles on gray background. Top right reads: “Oh, hey! FYI…”
Middle left speech bubble reads: You don’t get to say you are interested in social justice and disability rights while simultaneously posting ableist garbage that portrays disability as something children do to their parents. I do not think those words mean what you think they mean! #BoycottTheMighty
White text reads: “Enough is enough! Join PACLA as we pledge to #BoycottTheMighty!
We will not contribute to or be tokenized by The Mighty.
We as writers will not allow The Mighty to publish our content.
We will not share their content on social media.
We will not stand by as The Mighty continues to disrespect and devalue disabled lives!”


Sign our petition to the editors of the Mighty!
Check out these postings by some of our PACLA moderators to learn more about why we pledge to boycott The Mighty:
Check out these blog posts from other disability activists and advocates on how The Mighty hurts the disability community:
On Twitter you can also check out the hashtag ‪#‎CrippingTheMighty‬
Take the pledge with us and tell The Mighty that their ableism is unacceptable!

The original post can be found HERE on Facebook and HERE on PACLA's Wordpress



I Know You're Lying... Follow-Up on The Mighty

Right before Christmas 2015 I posted a letter to the editor of The Mighty that I had sent. Almost immediately I received a reply from Megan Griffo and I decided that I was not going to share her emails until:

1. She stopped communicating with me (ignoring)
2. If the emails became 'splainy and/or not at all constructive
3. If empty promises were made.
4. If The Mighty continued the same pattern that has been highly criticized by many.

All of the above, except #2, have been met. I was told by someone I trust that the email I received from Megan was almost identical to the emails that others had also received. (which is not a surprise to me). I've not had any correspondence from The Mighty since the morning of Dec 23., but yet they continue to publish/promote ableist articles on their Facebook page. That doesn't sound much like wanting to change. 

Below are the screen shots of her email to me and mine back to her... If you've been in contact with The Mighty, please let me know in the comments



Subject: Re: Feedback on Ableism and Improvements to The Mighty


Hi Kim,

You certainly were not wasting your time in writing this. Thank you not just for reaching out but for supplying me with real resources and insight. A lot of people would have read my post as mere damage control and opted out of answering my questions, and I'm so glad you've maybe given me the benefit of the doubt.

In the next few weeks, our team is talking to as many people in the community as possible. It's a step we should have done earlier; I regret that we didn't do it properly, but what I can do now is move forward from here. The Mighty has grown, yes, but we're still in what I consider our baby stages. This means we have a chance to evolve and get it right. 

I want to take more time to really soak in your email and read through all the links, people and organizations you've directed me to, but I wanted to respond ASAP to let you know how much I appreciate this. You don't know me personally and you certainly don't owe me anything, but please

don't owe me anything, but please know I'm sincere when I say I want The Mighty to actually serve the disability community. It won't happen overnight, but changes will happen. 

If you don't mind, I'll certainly be reaching out with questions that arise. 

I hope you have a wonderful holiday,
Megan

Megan,

Thanks for responding so promptly. I'm sorry I was not able to return correspondence right away, the holidays make me ridiculously tired! I had sent my email before I was able to read the post "Let's have a Conversation" where you also said people could leave you with their phone number. I don't normally do phone calls because of my anxiety. but I am willing to have a real conversation with you guys. I want you to know I am very serious about helping you figure out how to change the narrative. So, my number is [redacted]. If you do decide to call can you please

If you do decide to call can you please give me a 24 hr. heads up about the day and time? 

Thank you again, 

Kim