Tag Archives: Autism Awareness

The neurodiversity fence

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Written by Beth Ryan

ONeuordiversity is not about writing pretty blog posts that appeal to the masses. It is about the human rights of people of all neurologies. It isn't about picking the parts that make you feel good. If you want to make a difference.... GET OFF THE FENCE! loveexplosions.netne of the criticisms that is most frequently hurled at me by other parents of Autistic kids is that I judge people.  I freely admit that I do.  Often.  Constantly even.

But my judgments don’t come from a place of wanting to elevate my own self esteem as so many of these criticisms imply.  I am ever engaged in judgment of what will hurt or improve my daughter’s quality of life.

I’m not perfect.  I’ve done and said and written things which I know have been hurtful to my daughter and her Autistic tribe.  One of my greatest regrets is the fact that I spent so much time fighting AAC and trying to force my child to speak.  That cost her more than I will ever know.

The other criticism I get most often is that I am “PollyAnna” about Autism.  That I want to sweep the challenges my daughter and family face under the rug.  While I choose not to publicly share details which I feel could hurt my child or family, I do not ever deny that some things are really, really hard.  But I cannot think of any obstacles that could not be overcome by a shift in the way disabled people are supported, accommodated, and spoken about.

Recently, there was a stir caused by a very popular blogger’s comment:  “I’m also going to remind you that even in the midst of all the positivity, you’re not human if you don’t have moments where you wish to god your kid didn’t have to struggle and all you want to do is tell autism to f@%k itself. That’s the secret that no one will talk about. But it’s what makes us real, and it’s okay.” 

I judge.  I judge.  Yes, I do judge.  THIS hurts my child.

And I’m judged.  I’m not “human”.  I’m not “real”.

My child is Autistic.  She IS Autism.  Telling Autism to go fuck itself….that’s telling my kid to go fuck herself.  This has never crossed my mind.  Not because I am perfect.  Not because I don’t have bad days.  Not because I don’t want things to be easier for my child in many ways.  Not just because I love my child and this thought would be a betrayal of that love.

Because my child is NOT the problem.  The problem is the way the world responds to my child.  And on the days that I struggle–the ways that I respond to my child.

Being a parent to ANY child is hard.  There are days when bedtime cannot come soon enough.  You don’t have to have an Autistic child to know that this is true.  Those are the days where I succumb to my human weaknesses.  I get frustrated.  I say the wrong thing.  I react the wrong way.  And my reactions make life harder–for my child and for me.

I’m privileged in that parenthood was a choice for me–I do realize that it is not a choice for every person.  When I decided to become a parent, I signed up for the ups and downs.  I signed up for the happiness and the heartache.  I signed up for all of it.  I’m accountable to my child.  I’m accountable to myself.

I judge people.  I do.  I also judge myself.  I’m responsible for judging myself and for doing better when I fail.

I’m responsible for creating a world in which my child can thrive.  I’m responsible for judging the things that stand in the way of my child’s quality of life.

I’ve found that this responsibility isn’t always fun.  And it certainly doesn’t win me popularity.  But we can’t make things better if we don’t talk about the things that are wrong.  I’d love to write a blog which everyone loves and celebrates.  I would love to not receive hate mail.  I’d love to not rock the boat and be friends with everyone.  I’d love it if everyone would think that I am just the bees knees.  Because it isn’t fun when what you say and write is not popularly received.

But I love my child.  And I will stand out in the cold and rain for a lifetime if it means that she is spared even a moment of facing the elements.  Not because I am strong.  Not because I am brave.  But because I’m a mother.  And that’s what mothers do.

My child is more important than stroking the egos of other parents.  Every single time.

My child is more important than my desire to feel liked.  Every single time.

My daughter doesn’t have the luxury of riding the fence.  So I’m not about to climb up and ride it at her expense.

 

scorch the earth #lovenotfear

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Image is a rust colored background. A faded puzzle piece is covered by a heart. The text reads: No more puzzle pieces. Love not Fear. loveexplosions.wordpress.com

Written by Beth Ryan
This post was written as a contribution to the “Love not Fear Flashblog” presented by Boycott Autism Speaks.

You are my child.  You are the child that I have.  And the very child that I wanted.

Your Autistic body is exquisite.
May it always respond to you.  To your will alone.
You owe your gaze to no one.
May you rest it only on that which offers you contentment.
Your flapping hands express your joy.
May they laugh at those that seek to make them table ready.

Your Autistic spirit is on fire.
May it burn bright in sight of those who would extinguish it.
You owe compliance to no one.
May you incinerate the intentions of all those who would force it.
Your worthiness of humanity is infinite.
May it ignite the blazes of love and acceptance to which you are entitled.

Every part of you is Autistic.
And I love every part of you without qualification.
There will never be a “but” after my love.
May we scorch the earth of all that endangers your selfhood.

champions of social equality

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Image Text Reads: You're not actually for equality when you would deny Autistic people the right to--or belittle Autistic people for speaking in favor of their own existence.

Image Text Reads: You’re not actually for equality when you would deny Autistic people the right to–or belittle Autistic people for speaking in favor of their own existence.

Written by Beth Ryan

It is pretty trendy to call yourself a champion of equality.  But here’s the thing folks.  Being a champion of equality?  It means just a smidgen more than being for marriage equality.  Being a champion of equality?  It means just a titch  more than being for gender equality.  Ahem, The Femisit Breeder.

I am NO expert on equality and all that it implies.  Because I am limited both by my own privilege and by my relative inexperience.  But I do know enough to shut up and listen when people of a marginalized group tell me that I should check my privilege, that I am being a bigot/racist/sexist/ableist/whateverist.  I don’t keep talking… unless it is to ask questions.  No, not the kind of questions that aren’t really questions but jabs.  The kind of questions that help me take baby steps towards understanding.

So when a self-proclaimed feminist makes a statement like this one:

I’ve legitimately seen it all now: Apparently I’ve attracted a whole subgroup of folks who think that we shouldn’t be trying to prevent/treat/cure Autism because it’s not a disability, it’s just like being “gay or dark skinned” and if you want to prevent/treat/cure it, then you’re discriminating against the ASD community. 
*Sigh* Congratulations Internet, you’ve jumped the advocacy shark.
–Gina Crosley-Corcoran (The Feminist Breeder)

My jaw hits the floor.  And then I read this from the same person:

I agree it’s totally up to the individual whether they want to be treated, and high functioning folks probably don’t feel they’re missing out on anything. But think about low functioning kids – those kids who’ll never be able to lead a normal life – how can we seriously say that it’s wrong to try to prevent that kind of disability? Being unable to care for oneself is not a “variation of normal” or any other such nonsense. It’s a disability. Of course these people should be treated with care and compassion, but it is not something we should be trying to promote. I find it wildly irresponsible that this so called “neuro-diversity” movement is trying discredit autism prevention and treatment measures as “discriminatory.” If there was a way to prevent depression and anxiety, you better believe I’d support that.

And now I am PISSED.  Because I know that she is referring to people like my daughter. People like Amy Sequenzia, Henry Frost, Amanda Baggs, and Emma.  And I am also damn near certain that she has never actually spoken to any of these “low functioning” people.  Because she obviously doesn’t understand that someone can be far from typical and still happy.  Still a valuable human being.  She obviously doesn’t get that the ability to perform personal care doesn’t guarantee or negate quality of life.

So Ms. Crosley-Corcoran, and the too many people like her, are not actually championing social equality They are championing….well… THEMSELVES.  These people don’t actually give a rat’s ass about ACTUAL social justice.  No.  They are trying to disguise their personal endeavors to acquire power and privilege.

Actually, Ms. Crosley-Corcoran doesn’t really even understand what privilege means.  What the mother?  Huh?

I’ve noticed the same, and I think those folks oughta check their privilege. To be so high functioning that you can see it as a gift is a privilege that so many in the ASD community do not possess. My best friend’s child has ASD and his care consumes her life.

Do you remember when Paris Hilton participated in the “Vote or Die” campaign?  And then it was revealed that she had never actually voted.  Or even registered to do so?  This is all sorts of shades of that.  It is hip to be pro-equality.  Even when you don’t have any idea what that means.  Even when you are clearly and unabashedly NOT for equality.

Social equality.  It is not just a thing that the goofy celebs and wannabe celebs are doing for kicks.  It actually means something.

If you are for it, it means that you believe that ALL people are entitled to the same rights under the law.  ALL people should have equal access to civil rights, to healthcare, to education, etc.  When you exclude a population of people  by claiming that preventing them from existing is acceptable…  you’re DEFINITELY not even close to being for social equality.  You’re just another self-serving douchebag trying to grab yourself some power.

Please check out: Divergent: when disability and feminism collide

Kelli Stapleton. Still relevant.

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Written by Beth Ryan

It was always directed toward me.  Her um anger and aggression.  Always toward me.  I wondered if that was a consequence of doing a Lovaas replication program.  Because I’ve been in her face since before she was two years old.  It was always touch your nose.  Touch the apple.  Do this.  Do that.  And you know, um, maybe this is sort of a natural consequence to that.  I’m not really sure.  But I’m sure at this point it is some sort of shaped behavior.  Because sometimes even making eye contact with her will trigger a response.  (Kelli Stapleton–full interview here)

There is no doubt that the tragedy involving Kelli Stapleton and the attempted murder of her child belongs in every single conversation around Autism “treatments”, bullying, and the way that some parents of Autistic children habitually devalue and dehumanize their children.

The fact that so many parents are still willing to make the claim that Kelli’s attempt to murder her own child is “an act of love” means that her name and the road she traveled to get to the place where she was able to harm her child needs to be brought up again and again.

We need to examine.  To scrutinize the ill fated journey that she took to get to that place.  It is uncomfortable.  It is painful.  And it is entirely necessary to talk about that heartbreaking topic.

The how and why are so very important.

The easiest answer is that there aren’t enough services.  That there aren’t enough supports for Autistic people and their families.  And while it is true that Autistic people are in desperate need of more direct services and supports, we cannot say that lack of services are to blame for Kelli’s attempt on her child’s life.  Issy had just come home from an extended stay in a residential facility and Issy had around the clock care.

So we must look elsewhere for our answers.  I believe that the answers are in the way, even as parents, we have come to see Autistic people.  Not fully human.  Not worthy of the rights and respect that most of us take for granted.

If you read Kelli’s blog, you will not think it unlike many blogs written by parents of Autistic children.  For instance, you probably would not dream of posting a video of a typical teenager at his most vulnerable moment.  But parents of Autistic children do so habitually.  When either of my children are having a challenging moment, the furthest think from my mind is snapping a picture of myself comforting her.  Or capturing a video of a meltdown.  These are sacred moments where my child needs me.  Where I am thinking, only, of making sure my child knows that I am present and loving her with my entire being.

Capturing media as fodder for one’s blog should be about the furthest thing from one’s mind.  And I don’t believe that it is with this type of parent.  The martyr mommy/daddy.  Sure they can claim that they are trying to help other parents not feel so alone…or whatever the party line is.  But even if that is true, if my belief that they are attention seeking is wrong, they are doing so at the expense of the privacy of their children.  “Helping” other parents should not override the sacred trust of a parent/child relationship.

Parents prone towards these acts of betrayal of their children are not merely poor parents.  Because the ones that I’ve seen and am speaking of are also prone towards despicable acts of emotional and verbal abuse towards Autistic adults that are brave enough to face their wrath.

This tells me that these parents have devalued, not only their children, but Autistic people in general.  This should not be exactly surprising given the culture of hate and systemic dehumanization of Autistic people that we are entrenched in.  Nonetheless, I continue to be shocked by the lengths that these parents are willing to go to viciously bully Autistic people.  They wield their advantages of the power differential in shocking and despicable ways and maintain the nerve to cry out that they are the victims of discrimination.

Discrimination is a combination of power and prejudice.  Autistic people lack power.  They are a minority group and victims of all sorts of things like media bias, systemic oppression, marginalization, etc.  Autistic people are capable of bigotry.  But they are not capable of the type of discrimination that parents of screaming about.  The continued insistence that parents are the victims is offensive and only serves to underscore the fact that these loud parents are ignorant about what it means to be part of a minority.

I wouldn’t worry so much about what these foolish parents say.  Except that they are so damn loud and aggressive.  I cannot stand the thought of their voices–the voices of murder apologists– dominating the conversation around my daughter’s neurology.  The thought that they are perpetuating the Autism Speaks’ fear and tragedy stereotypes make it impossible for me to ignore them.

And so I stand with the brave Autistic adults, who are regularly targeted and viciously attacked by this insidious tribe.  I stand with them because they are awesome and courageous and kind.  Yes.  Because they are my friends.  Yes.  But also because every single time they hang their necks out,knowing full well that they will be targeted and abused as a result, they are hanging them out for my daughter.

So I’m selfish.  And I’m grateful with every fiber of my being.  As such, it is my moral obligation–the moral obligation of every single parent of an Autistic child out there, to use our advantages to support the creation of a world where our children are seen as whole and valuable human beings.  That starts with the recognition of the fact that the assault against the humanity of any Autistic person is as good as an assault against our very children.

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