a world without boxes

A whopping big yes to this!

a diary of a mom

“Pointless bottling emotions of endless frustration cause words to wither in the recesses of the mind. Biting becomes the only way to stay rooted, but causes everyone watching to respond in loud voices of angry fear. Until there is understanding, you are alone in the terrible confusion of other people’s voices that are louder than yours.

Caution is needed whenever we decide we know what is in the mind of another human being.”

Emma Zurcher Long, once again striking a chord that resonates so deeply in my soul that I simply must share it.

I used to say that we – that I – had a responsibility to speak for those who cannot speak for themselves.

I don’t say that anymore.

This is precisely why.

Our responsibility, our mission my mission, is to do everything in our power to find a way for everyone to communicate in his or…

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Crossing the line: The Danger of Compliance

Thirty Days of Autism

As Amy Sequenzia so eloquently states: “ABA is not only abusive to Autistic children, it makes ableism and abuse acceptable. “Experts” want 40 hours/week of this and parents who don’t comply can lose their children. ABA creates a culture of normalized abuse.”

~

The following is a guest post composed of a series of writings by Bernice Olivas, who has generously agreed to share her experience. Hers is a harrowing story, but one that illustrates the dangers of demanding compliance on so many levels – and it is a story that needs to be understood.

It’s been two years since Nebraska’s Child Protection Services threatened to take away her children because she refused to place them in full-time (40 hrs/week) compliance-based training.

She and her husband were never accused of abuse or neglect, the only reason CPS was involved with her family was because her children are autistic and some…

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“Temporarily abled”

I had read Dressing While Disabled by JustStimming a while back, and it had nudged me into seeing how much we “able-bodied” take for granted about pretty much everything. Seriously, we do. We wake up, get out of bed (with varying degrees of ease, but it’s usually easy), shower, dress, eat, etc., without thinking about it. We just DO things as we move through our day. Because of this post, it’s something I’m now aware of – but it’s a spotty, temporary awareness, that pops in and out of consciousness based on what’s going on around me. It’s not something I’m conscious of 100% of my waking hours.

Recently, there was a reply to my reblog that added another dimension to the Dressing While Disabled post, from tpcoughlinhomespunyarns.wordpress.com:

“When one is not disabled one is part of the “Temporarily Able-Bodied” community. They take most things for granted. If one lives long enough, something will slow them down. ALWAYS! Once you have joined the normal community, you realize you can take nothing for granted and have to take everything and every day, one step at a time.”
STAIRSknee

When I was in college, I tore the cartilage in my knee. This was back in the days when you were in a straight-leg knee brace for SIX WEEKS, with crutches. The above picture is one of the buildings I had classes in at college. See those stairs? My class was up there. I don’t know if there were elevators (this was 30 years ago). That staircase was LOADS of fun – I’m glad I didn’t fall and put myself in the hospital. My dorm room was on the 2nd floor (different building) – no elevators. I couldn’t bend my knee for a while. I was temporarily disabled, but I got better.  I’m lucky.

Present day, my body works fine. A bit achy when the weather’s bad, and I’m approaching 50, so things are going to shift around a bit 😉  But my dad is 90 and his life has changed drastically. I’m not going into the details, but he can no longer drive, he can’t go bowling (he LOVED bowling, was in a league), he can’t do what he used to do. Age, and health have conspired against him and made him disabled

Yes, we “expect” this when we get old, but others in my family are younger, and they’ve had knee replacements, surgeries, etc. Unless we are SUPER lucky, we are all only TEMPORARILY abled. In most cases we will recover – but not all.

Humans tend to be kind of selfish – we tend to think of OUR normal as EVERYONE’s normal. And since most of us are NOT currently disabled, we don’t see the world as difficult to navigate until we find ourselves in that space. We see the world from where we are, and it often takes an outside force to move us from that place to see the world from where others experience it.

I’m not saying we need to worry, fret, whatever about becoming disabled. I’m not trying to be a downer. But I am asking that we open our eyes and minds, and look at the world with an attitude that mirrors Universal Design in architecture. We need to think outside of our experiences – and yes, this takes work and purposeful thinking – and ask how we can make the world around us friendly to as many people as possible. I think that world would be a pretty fantastic place.

Geek culture is my home too.

Really great post – lots of truth!

The "Diane is weird" files

I was ten years old when I found out I was a geek.

I’d just gotten my IQ test back and I knew I was smart. I’d also gotten the worst of my bullying then, and I knew I was a social outcast.

I didn’t know how to behave. TV had no idea what we were like, and I mostly went to smaller schools. The most famous geek on TV was Steve Urkle. I shouldn’t have to explain why I felt like that wasn’t someone I wanted to emulate.

It was roughly 1991 and we visited my aunt and uncle in Virginia. I think we were in that lovely time period that the military gives you between moves because our family was leaving Maine and going to Germany. I think we stopped in Wyoming on the way. . .

But at my Aunt and Uncle’s house was someone who was…

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Our tapestry

Respect is really the only way.

Roses are Red for Autism

Most people don’t know that non verbal autistics are of sound mind. Upon seeing us do moves like flapping, rocking, or moaning, they assume we are unintelligent. People then proceed to talk about us as if we don’t understand what they are saying. This means we have to endure horrible untruths being said about us without being able to respond. No wonder we run off to escape elope. No one can just sit and endure that without blowing a gasket.

Sometimes people ask mom questions about me like:

“Is he low functioning?”

“Is he in regular school?”

“Will he be able to live alone someday?”

“How do you cope with his autism?”

Or best yet,

“Is he violent?”

These are all both assumptions about autism and questions I could answer myself, if asked. Sometimes mom gives the wrong answer but she doesn’t mean to. Other times I want to answer…

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We aren’t your scapegoats. End of story.

Chavisory's Notebook

I am oh so glad to see the anti-vaccination movement finally seeing some serious public blowback, and very, very sorry that it has taken a lot of sick kids to do it.  And alternately thankful at writing like this (Vaccines Don’t Cause Autism, But That’s Not the Point.  Stop Being Ableist.) being all over my Facebook feed, and ambivalent about some of its logic.  (It is still well worth reading.)

IF vaccines caused autism, even in some tiny percentage of vaccinated children, then whether the tradeoffs were worth the risk might be an ethical discussion worth having. (In which I would still give a hell of a lot of weight to “Measles encephalitis will straight up kill you, autism won’t.”)

But it isn’t. Vaccines don’t cause autism, period.

A hypothetical situation: If there were some form of medical treatment that carried a risk of turning me non-autistic, I…

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