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 





Thursday, December 31, 2015

Rambles About Another Year Gone By

Goodbye to 2015!

It has been a tumultuous year for me in so many very personal ways that I am not able divulge in a blog post because that process would require telling some stories that aren't mine to tell. (and it would also be way too complicated)

But, to sum it up, 2015 was a year that life as I know it changed forever. Life has a way of doing that, though... changing, that is. It's not the first time it has happened and I'm positive it will not be the last. I don't do so well with change. I know not many people do well with change, but it is especially hard for me and it takes me a very long time to adjust.

I pretty much found myself in a midlife crisis of sorts in the midst of all the chaos that surrounded me. I found the safety and security I thought I had finally found after so many years, disappearing. This brought about a lot of tears along with increasing depression and anxiety. This went on for almost the entire year.


So, when I look back on this past year I see a lot of hurt, but I also see a lot of support from people that care about me, too. This is so different from previous times when I have struggled, I believe this is why I was able to climb out of the pit of despair with next to no scars. The support was authentic and catered to my needs. No one told me to get over it. No one invalidated how I was feeling. Sometimes people didn't know what to say to me, BUT they were there to listen and they gave me time.

If you were one of those people... Thank you <3 You mean the world to me.

During 2015 I've also have done a great deal of introspection, along with recognizing where a lot of my issues come from.

For example :

Misogyny.

 I did not ever want to connect a lot of my issues with misogyny. In my mind that was implying that I was influenced by outside forces, that I was not a competent, free thinking individual and most importantly it would mean I was a victim. I don't like being the victim.

However, once I started to learn what feminism and the patriarchy was, the more I understood. I had deliberately stayed away from the term "Feminist", because it is considered a bad word to so many people. Besides, the only time I had ever really heard it before meeting so many wonderful Feminists was through sources that used words like "femi-nazi". To be frankly honest, the word "Feminist" scared me. But, once I figured out that feminism stood for everything in my life that I had ever said or spoke out on that other people told me I was sooo wrong about, I thought maybe there was so much more than I thought I knew... and there was.

The day that my daughter was told to call home from school for a dress code violation along with about 50 other girls in her school, I knew I could never not identify as a Feminist ever again. That was the day she was told by the asst. principal they were trying to protect her from the boys and that her body was a distraction. That was the day she stomped her foot and raised her voice and said very proudly "It's not the girls' FAULT, Teach boys to respect us".  I never want her voice to be silenced like my own was and I want far more for her than what society is offering her right now. One of my greatest fears is my daughter being abused in some way and believing that it was her fault. So, with that said...She needs me to be a Feminist and my boys need me to be a Feminist, too.




 text reads: "And the day came when the risk to
remain tight in a bud was more painful
than the risk it took to blossom.
-Anais Nin"
Text is on green textured
background with image
of a lotus bud.
(Image courtesy of Autism Women's Network)
I took the step of putting a tag line on my blog to signify the transformation I have undergone this year. It is the quote "And the day came when the risk to remain tight in a bud was more painful than the risk it took to blossom." by Anais Nin. I believe it fits quite nicely.

I've learned so much this year and I believe I know that is due to the wonderful connections I have been able to make because of my fellow mods at PACLA , AWN and the team at Boycott Autism Speaks. I feel totally empowered and some what in control of my own life because of them. I am a better person and parent because of them.

This year I've learned how to become even more comfortable with being uncomfortable when it comes to my own privilege. This means knowing my place and understanding when it's time to talk and when it's time to listen. 



And most importantly... I've learned that my heart always has room to love more people, even when it feels like it doesn't. In fact, I learned that my heart has infinite space.

I am ready for the New Year. My heart and my mind are wide open, ready to learn and love even more than the year before.

Wednesday, December 23, 2015

A Letter to the Editor of The Mighty

There has been much criticism about The Mighty within the Autistic and Disability communities. All of this came to a head on Sunday Decemeber 20th when The Mighty published an article called Meltdown BINGO that was making fun of the meltdowns Autistic people have. After a lot of blowback, they decided to remove the article and the next day published a note from the editor apologizing (in a kinda sorta way) and asking for feedback. So, I wrote to the editor and gave her my feedback. If you would like to write to the editor of The Mighty her email is megan@themighty.com

Below is my email. I'm sure I missed some points others may make, that is why it is important that people send in their own concerns to The Mighty. 


Dear Megan,


I would like to start of by introducing myself and telling you a bit about who I am. My name is Kim (on Facebook I am Kimberly Faith, on Twitter I am K1mmyR0cks and I blog at Eccentricities and Introspection on blogger). I am a 36 year old Autistic mother to 3 teenagers with my oldest being Autistic. I volunteer my time with Parenting Autistic Children with Love and Acceptance and Autism Women's Network . I am also one of the major players in the Boycott Autism Speaks movement.

I am invested in Neurodiversity, disability pride, authentic inclusion, presumption of competence, intersectional activism, youth rights and so much more. I am also one of the critics of The Mighty. 


When you published the article explaining why you removed the Meltdown BINGO article you asked for feedback. I really hope that was sincere, because I don't like to waste my time. I am not looking to be featured on your site, I am just looking to help you understand where you all get things so very wrong. It is going to be very hard to get every explanation you may need to fully understand the concepts I am going to touch on in this email, so please ask questions if you need to. 

 I've read your bio on the site and followed the link to the HuffPo post on you being a [good news] porn producer. One of the problems so many have with the mighty is the inspiration porn you produce. Inspiration porn is the objectification of disabled people to make nondisabled people feel good and The Mighty is loaded with it. Are you familiar with Stella Young's TED talk? (I'm sure you are to a certain degree) I'm going to link it here and I want you to seriously consider all the things she says in the video. If you don't have time to watch the video there is a transcript.

http://www.ted.com/.../stella_young_i_m_not.../transcript...

One thing I believe you are trying to do right is include disabled voices. However, you are choosing the voices that still fit your production of inspiration porn. That is not equally representative of the community and it does not help. In order to shift perspectives you're going to have to shake it up and get off the ableism fence.  You can't advocate for the rights, the acceptance and inclusion of disabled people while also giving a platform to ableism. There really is no balance where bigotry is concerned, no grey area. It really is very black and white even though many people have a hard time understanding what ableism really is and/or looks like since it is so prevalent in our daily lives.

I think those of you at The Mighty have a problem seeing the ableism so many of us see and this is why you need what I would consider more radical disabled people on board your team. It’s also very important that you understand that just because someone is a disabled person or parent doesn’t mean they can’t be ableist.

I think another major thing you could have great impact on is changing the narrative surrounding parenting disabled children. As of right now your site plays into the same old narratives as every other parent centric site. Currently the narrative is doom/gloom, pity and martyrdom.


Parenting is super hard. I think it's the hardest job I'll ever have and I would never deny that it is challenging.  I've participated in many online and in person support groups for parents of disabled children and no matter how positive the environment is supposed to be, the same narratives apply and like I said, The Mighty is no exception.

I believe with all of my being that parents need and deserve support. But, they deserve the right type of support and I don't think many parents even know what that looks like. Toxic support is rampant in the disability community and it feels so darn good many don't even see the toxicity. It's akin to an AA meeting being held in a bar where everyone is ordering drinks while talking about their addiction to alcohol and how they really want to get sober but... and the members of the AA group give hugs and tell each other that it's okay it's just too hard. I mean, sure, those people in that AA group feel supported and it feels good, but the outcome of that support is not a positive one. Same applies to the *woe as me* support groups for parents.

Parents of disabled children are often allowed to get away with saying and doing some of the most heinous things because society refuses to tell them they are wrong. The support community built around parenting disabled kids tells everyone that we should never judge a fellow parent because it's just *so hard* This is dangerous. It really is important that someone stand up and tell them they are wrong. Someone has to stand up for the children, but many won’t.

Some other things I've noticed in these toxic support environments is that it is so very rare that anyone wants to learn anything. I've seen the same whining and complaining over and over from the SAME parents that never take any solutions and want to learn nothing. They don't care about their child's dignity or how to help them, they only want pity.

Your site perpetuates ALL those things.

There is a way to write about parenting disabled children without sacrificing the dignity of the child. I think one of the things The Mighty should start focusing on is the fact that parenting isn’t about parents, but it’s about the children we are supposed to be supporting. All too often parents take everything so personally and/or make their child’s struggles about them. I wrote a bit about that here if you’d like to further explore what I am talking about.

I think another thing that would be super important for you to do is to start touching on how parents help their children to internalize ableism. I also wrote a little bit about that HERE if you care to take a look.

You have a huge platform, one that could potentially change so much. So why would you want to be just like every other site out there? Is the popularity worth disabled people’s humanity? Because that is the cost.
text reads You have a huge platform, one that could potentially change so much.
So why would you want to be just like every other site out there?
Is the popularity worth disabled people’s humanity?
Because that is the cost.
background a dark red textured one


I will leave you with a few sites and bloggers you can look into for guidance.


Parenting Autistic Children with Love and Acceptance (a community)
Autism Women’s Network (a nonprofit)
Autism and Neurodiversity in the Classroom (a community)
The Autistic Self Advocacy Network (A nonprofit)
Nonspeaking Autistic Speaking (links to all the blogs Amy Sequenzia has written)
Thirty Days of Autism (A blog by Leah Kelley)
Unstrange Mind (A blog by Sparrow Jones)
We are Like Your Child (a blog with various disabled writers)
Respectfully Connected (a blog)
We Always liked Picasso Anyway (A blog by Lei Wiley-Mydske)
Radical Neurodivergence Speaking (A blog by Kassiane Sibley)
The Giraffe Party (A blog by Jennifer Muzquiz)

Neurocosmopolitanism (blog by Nick Walker)
Ollibean (a community)

And so many more that I am probably forgetting. If you want to get a more extensive list you can reference this list on PACLA’s blog. You can also follow the AWN FB page, it is updated nearly every day with posts from various people.

I sincerely hope you are really ready to make a change.

Thank you for your time,

Kim



You can find my Follow Up On this HERE