Saturday, January 14, 2017

The Devastating Dismantling of the Affordable Care Act

I have been thinking a lot about the Affordable Care Act and am so sad watching it be dismantled. It's a terrifying prospect for so many people. This feels personal for me too, though I want to emphasize that I am one of the lucky ones that is less likely to be dramatically affected by the ripping apart of necessary healthcare, piece by piece. Because currently I can work, and have health insurance through my job, I am not likely to be devastatingly affected like so many of my disabled friends. 

I do want to talk specifically about the pre-existing conditions clause. This has directly affected me and is likely to continue to affect so many disabled people. 

8 years ago, I didn't have a job. I had spent 9 years at home with my own children. Then my husband lost his job and the company he had worked for no longer existed. So we needed to purchase health insurance for our family of 5 through the private sector.

Besides the ridiculously expensive payments, we were hit with another surprise. I was told I was ineligible to purchase health insurance because I had a pre-existing condition. 

The funny thing was that this pre-existing condition was news to me. I had seen a doctor earlier that year for suspected migraines, and that was the pre-existing condition that made me ineligible. 

I want to be clear that I think everyone should be eligible for health insurance. Anything less is a death sentence for people with chronic illness. That is important. 

It was terrifying to hear that I am ineligible for health insurance because my possible migraine could be a possible brain tumor. So the logic was that the person with a possible brain tumor should be without health insurance. 

It kept me from pursuing treatment of migraines. 8 years later, they are still disabling and still untreated. Because it became too scary. 

So now I sit here in what is really a place of privilege. I have health insurance through my employer. My whole family does. So we will be unaffected. 

But I also come at this from a place of being terrified. I recognize that I need mental health care for my other neurodivergences. And yet, that will just be another pre-existing condition. And what happens if my situation changes? 

So I am by far not even close to the terror that this can really be for so many people. And yet, I am close enough to it to recognize how terrifying this is for so many of us. 

And I want to point out that many people supporting this dismantling of the Affordable Care Act claim to be Christians, supporting life and caring for other people. But I am sorry, this simply can't be true. You are supporting killing us. 

Wednesday, January 11, 2017

Invisible Person

I use this space as a place to map out my thoughts, especially when my feelings are negative and I have unsorted thoughts. So it can be a stream of consciousness,  but it is real, and it helps me sort things out. 

So I am thinking about how I am this invisible person. I've always been invisible, even to people close to me, maybe even especially to people close to me. 

I get it. I'm quiet. I have a hard time interacting with people. If anything makes me even a little uncomfortable, I have an even harder time interacting with people. I don't stand out. I don't have amazing or novel ideas really. I'm certainly not the life of the party.

But what I am is the lynchpin. I quietly hold things together and go mostly unnoticed. Sure I am there if you come looking for me. I'll be there to celebrate with you when you are happy about something. I'll be there to try to help you through it when things go wrong. But it is in a quiet way, steady, slow, silent.

The problem is that while I definitely do not want to be the center of things, I like the background..... I do wanna know people care, that they see me, that they remember I am there, holding things up in the background. Sometimes I feel forgotten. Lost. Because invisible you know. But that doesn't work for me. I need to feel remembered and cared about, or I quietly walk away, because I don't know what else to do. 

Once, as a kid, I had a meltdown, and loudly cried, saying to my family, "you treat me like a speck of dust in the corner." They dismissed this, and laughed about it for years after. But the sentiment holds true today. Back then I was crying out, trying to articulate the same thing I am still trying to articulate today. That I need to be seen. I need to matter. Because even if I am invisible, I am still there, thinking and feeling, and holding things up in the background. 

Tuesday, November 15, 2016

How to be an ally- (from one marginalized perspective)

I have been thinking a lot about allies and what it means to be an ally. What do we want an ally to do? 

I consider myself an ally for many marginalized groups that I am not a member of. I certainly have considerable privilege. I think the biggest thing is to listen to members of those groups though. See what they think it means for you to be an ally for them. I try to do those in things if/when I am able. And I think it is very ok to not be able to do lots of things for people. It's ok to have limitations. 

Activism can look like using your own platform to amplify marginalized perspectives. It can be as simple as retweeting marginalized voices. I think that is really important. You don't really need to add your own voice. You can simply give them your platform. Because if you are in a position of power, more people respect what you have to say, or what you share, than people respect that marginalized person. Share their Facebook post. Don't add commentary like, "what do you think?" Just share the marginalized perspective. 

Activism can look like listening to marginalized people with an open mind. Be less ready with your reason for why they are wrong. Be more ready to say, "I learn so much from you. Thank you for taking the time to teach me." Don't judge our tone. We are angry for a reason and it may hurt your feelings a bit, but that's ok. It's part of the process. 

Yes communities are wide and diverse and opinions vary. Sometimes it's ok to take a step back and refrain from judgment. I do this a lot. If I am not part of a community, I wait, I listen. But I also think that once a community has spoken, and has a general group consensus, that consensus should be respected and not debated by people outside the community. (It's always ok for people within a community to continue to discuss and evolve.) If a community is not at consensus, it's still not your job to tell that marginalized community member that they are wrong. Their experience and opinion are not wrong.

I hear people all over simply asking to be heard. Listen to us, accept our words as valid. Share our message. That's how you ally. 

Saturday, November 12, 2016

As We Grieve~ A Love Letter

The community I love is grieving right now. As a whole, we are angry and hurt and terrified. The reason for this is, of course, the recent American election of Donald Trump. 

We are frightened not only of his policies, but of legitimacy he gives to hateful, bigoted people. I am a disabled queer person who has only embraced my identity in full in the last few years, when it felt safe. Now I face a world that feels immediately less safe overnight. And I know that the world is scarier still for many others. Marginalized people lost Liberty this week. If you think this election is just about "my side lost," then you are too priveliged to feel the real impact. 

But as we grieve, part of what I need to do is to tell my community how much I love you. In a world of hate, I guess I think we need to hear it. I've watched us band together to protest injustice. I've watched us check in on each other and ask if everyone is ok. We offer to help one another, whether that be knitting a cap or making some soup, or talking to each other. 

I love how in this community we are really good at knowing where each other's soft edges are, and caring for those edges. We affirm and reinforce things again and again because it is so desperately needed. We add trigger warnings and content notes to protect each other. We add image descriptions to increase accessibility. I just really love the way we look out for each other. 

So right now I am grieving. I am terrified I am angry that there is enough hate in America that this really could happen. But I am glad I am not facing that alone. Disabled people and other marginalized people are supporting each other through this, and for that I am grateful. 

Sunday, November 6, 2016

Thoughts on trigger warnings, media, and abuse

CN: sexual abuse and childhood sexual abuse, emotional and physical abuse

I have had these thoughts for a while, and I have been in too dark of a place to write about it. It is hard for me to write about, both because it stirs up bad memories that I would rather dissociate from, as well as because I am having a hard time with people that are mostly on my side. 

CN: childhood sexual abuse, abuse
So first I will tell you my story. I don't remember most of my childhood. What I do remember of my p*rents involves a lot of emotional abuse and some physical abuse, as well as some questionable sexual abuse. Then in August I remembered more things, about other people sexually abusing me. I was grabbed in private areas by a family member and then gaslit when he pretended nothing happened. I remember once directly confronting and him directly saying nothing happened. There were other times I said nothing and neither did anyone else say anything.

My brain forgot those things. On purpose. Because I needed to forget. I only remembered *some* of my experiences when it became vital that I remember. 

Then Donald Trump came along and he said awful things because he is a despicable person. I am referring to the Access Hollywood interview here. So.... The thing is yes, he needs to be called out. Of course what he said was not ok! But throwing his words in my face and the faces of those with similar experiences, is also not ok.

I see memes talking about "pussy grabs back." I see political ads that remind us of his words. And the thing is, the people you are defending, you are harming us more. Because it is everywhere, without warning. And this is far too raw for me right now to just be ok with this. 

So yes, vote against this creep! Yes, call out his actions! But add a trigger warning. Remember the people you are defending before posting. 

Sunday, October 23, 2016

Disabled Self Worth

I have been thinking about how afraid I am to talk to people. I assume people don't like me, don't want to spend time with me, and unfortunately, this is not uncommon among Autistic people. 
It began because I read the words of another Autistic, describing those dreadful calls for pity of an Autistic person, inevitably arranged by an abled loved one, to send birthday cards. You can read that post here. Other times it asks that we simply "like" the photo to tell the disabled person they are beautiful. It may feel like abled people are helping, telling us we are beautiful, but the message is clear. You are not enough on your own. Abled people can take time to give you a thrill now and then though. 

We are so much more than this. I'm a teacher and a parent of Autistic kids. They interact with abled kids and abled teachers and therapists. They are amazing and I fall in love with them each individually, not in spite of their autism, because of their autism! When they can't stop talking about languages because they love languages that much, or they use a script that so accurately tells me just how they are and what they need at that moment, more than trying to describe it ever could, when they marvel at the beauty in a drop of water as it hits the light. How could you not love that? 

But we are taught that we are less than. People say we can not care for other humans. That we are heartless. Nevermind that Autistic people have made me feel far more like they see me and care for my emotional needs than any abled person has. We hear that a man so deplorable it sends shivers down my spine to think he may become our next president, must be mentally ill, because of course a neurotypical person could not be that deplorable. We see depictions in haunted houses and Halloween decor of the scary mental patient. Nevermind that most violent crimes are committed by people without a mental illness. 

So I hide. I avoid people. I assume people hate me. Because let's be honest, they probably do. I act strangely, go out of my way to be weird. I don't make eye contact. I can't do small talk. And all you've ever been taught is to feel sorry for me. Send me a card on my birthday. Take me as your pity date to the prom. Do a Best Buddies project with me. 

It's no wonder so many of us struggle to feel like real people. Wanted people. Loved people. If you are a parent, therapist, teacher, etc., do better. Show us that you see us for real.

Saturday, February 27, 2016

Value in Diversity

One of the most common themes I see is people belittling others based on intelligence. Use of ableist slurs is so common that people don't even bat an eye when ableist language is thrown into G rated movies without a thought. Why is this? People are equating lower intelligence, learning disabilities, and slow processing time to being a bad person, unworthy.

In fact, I think the value of a person is not based on intelligence at all. Qualities I look for in a person include kindness, compassion, and support for equality. But people don't hurl bigoted at another person as an insult, like they would an ableist slur...

There has been a campaign on social media recently called #SayTheWord. The word they are referring to is disabled. So many people are afraid to use this word, fearing it is an insult or disrespectful. Why do we think this? Because nondisabled people see themselves as superior to disabled people, like we are inherently broken. 

I have slow processing time. So it can be hard to have a verbal conversation with me, because the conversation has changed by the time I have processed and responded. Sometimes it is also hard for me to participate in written conversation when it moves too quickly. I have sensory difficulties, so it is hard for me to join in activities the way others do. 

I am not broken though. I am the friend that will sit with you all night, talking as long as you need. I am the parent that loves their kids fiercely, celebrating the glorious diversions from the mainstream that they are. I am the teacher that helps kids' first school experience be a safe and positive one. 

I'd like to see a change in the way people view other people. Ableist slurs can and should become a thing of the past. Separation between Autistic people, as some seek to separate us into gifted and learning disabled, as if those are the binaries we all exist under, should be done away with. No, we are not all the same. But our differences go far beyond an IQ score. I celebrate that diversity.