i am NOT Kelli Stapleton

I am NOT Kelli Stapleton.  Don’t call me that.

And I sure as hell hope you aren’t either.  Or I have a call to child protective services that I am morally obligated to make.

I have a bipolar diagnosis.  I’ve struggled lifelong with bouts of depression, anxiety, and insomnia.  I’m no stranger to emotional instability.  I can say with some certainty that I will never break.  More on that in a bit.

I can say with absolute, unflinching, unyielding, certainty that I will NEVER break my children.

How can I be so sure?

Because I love my children.  When I am feeling low, you won’t find me on Facebook or Twitter posting nasty little ditties about my kids.

Not like this:
loving mother 1

Or this:
loving mother 4

Or this:
loving mother 5

Because this kinda thing?  It isn’t about mental illness.  It is about a selfish mother who doesn’t have an ounce of respect for her child as a human being.

This?  This is about a mother who has systematically and publicly demeaned and degraded her child–over the course of years.  A mother who does not, and has not, valued her child’s humanity for a very long time.
loving mother 2

If I am crumbling and close to the point of breaking?  I’m not blogging about my hatred for my child.  I’m taking a big old break from the blog and social media.  In fact I am doing that little break thing the moment I start to feel overwhelmed–like I have more on my plate than I can currently handle.

I’m getting help before I get to the point where I am loading my kid and poison into the van.  Well before that.

If I don’t get to choose what help will look like?  Like if around the clock care for my kid is just not good enough, for instance?  I’m surrendering my child to protective services.  to protect her from me.

Kinda like alcoholism.  I have all of the empathy in the world for a person who struggles with alcohol addiction.  The moment that person sets foot in a car and recklessly kills another person?  My empathy dries up.  Not for all alcoholics.  But for that person.  I don’t want to talk about how the system failed that person.  I don’t want to talk about what help that person should have had.  That is disrespectful to the person who was killed and the people that cared about that person.

Does that mean I think we should stop talking about alcoholism and the supports that alcoholics need?  Not even.  It just means that I keep that conversation separate from the one around the crime.

Crumbling, breaking, falling apart parents of disabled children?  The ones with “caregiver” stress/burnout, whatever?  They don’t have the time or energy to pop on Twitter to say something humiliating about their children.  Or to write blog posts filled with intimate details about their children.

This isn’t some vendetta.  This isn’t about vilifying anyone.  No need to vilify a person that is ALREADY a villain.  This is about the methodical devaluation of disabled human beings–and all its possible tragic endings.

This isn’t about discouraging caregivers from connecting with resources.  This isn’t about silencing those that need help.  This isn’t about denying stress or mental illness.

This is about insisting that there is always an alternative to killing your child.  This is about acknowledging that as parents, we are responsible for our mental health.

This is about not allowing the allies of murderers or would be murderers to cloak reality in the guise of lack of services and mental illness.

This is about not speaking about disabled people and especially disabled victims of violent crime in ways which normalize and establish caregiver murder as understandable, acceptable, or even expected.

This is about not allowing ourselves to be indoctrinated, by the murder apologists, with the notion that we could be Kelli Stapleton  This is about all of the would be Kelli Stapletons refusing to acknowledge that they have taken steps down that same road Kelli traveled.  Deliberate steps through the choices they make every single day.

This is about their manipulation tactic:  “You could be Kelli.”

Attempted murder doesn’t happen to just any old parent of any old Autistic kid.  It happens to the ones that don’t love their kids.  The ones that would rather snuff out a life than take a brand of help that is undesirable to them.

I could not be Kelli Stapleton.

Not now.  Not ever.  Not in the absolute worst possible set of circumstances.

I’m not Kelli Stapleton.

If you love your child, neither are you.

The neurodiversity fence

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.

 

Terrorist Threats

Written by Beth Ryan

“We should talk about supports that families need. We should talk about it when there are cuts. We should talk about it when lack of services makes it difficult for us to work, to go out in the community, to perform ADLs, etc. We should talk about supports and services until our faces turn blue – but NOT in connection to murders.

When someone kills their disabled child/children and our response is “this shows that we need more services,” we as a community are taking people with disabilities hostage. The implicit threat is “give us more help or the kids die.” Saying that parents are forced to kill their children by lack of services also destigmatizes child murder and excuses the parents’ actions. The truth is that plenty of parents raise children with disabilities under all kinds of circumstances, without killing or abusing them.

Service provision is so so very important but we CANNOT use child killing as a launching platform for advocacy on this issue. It will do more harm than good.”  Zoe Gross

 

The importance of the statement above, made by Autistic activist Zoe Gross, cannot be overstated.

Image is peach graphic with light pink peace sign. The text reads: ter·ror·ism [ter-uh-riz-uhm] noun the use of violence and threats to intimidate or coerce, especially for political purposes.

On April 3rd, Robert Robinson was murdered by his mother, Angie (who also committed suicide).  Robert was 16 years old and Autistic.

The conversation following the murder centered around lack of services and sympathy for the mother.  As it always does.  I can say always because this happens with enough frequency to warrant that language.

Why are we not collectively outraged that disabled people are being held hostage by those that are making terrorist threats?

That IS, by definition, what is happening.  A politically motivated group is making threats of further violence against a vulnerable group of people.  Disabled people.

It is tempting to negotiate with terrorists.  Especially when the threats of violence are credible.  And recent history has shown these threats to be quite credible.  But we know that submitting to this type of savagery opens the door to continued–escalated even– violent coercion.  Surrendering to those that use homicide as a negotiation tactic serves to reinforce this as a viable means of political gain.

Productive conversations by peace loving people do not begin with ultimatums of brutality. Not ever.  Parents that love their disabled children do not threaten to do them harm should their demands not be met.  People that value the lives of disabled people do not sympathize with the thugs that make such threats.  Nor do they use the violence already perpetrated by other parents as blackmail to achieve their objectives.

The most compelling argument cannot be entertained when it is dictated that the rejection of said argument will result in the intentional harm of other human beings.  Scores of parents to Autistic children are engaging in this type of threat.  By doing so, they are undermining what is, in many cases, a valid plea.

ALL Autistic people need more support and accommodation.  Caregivers need different and better supports than what is currently available to most.  (I would argue that what caregivers think is needed, in most cases, is actually contrary to their objectives but that’s a whole other discussion).  However, the murder of a disabled person is not a result of the failure to meet these needs.  The murder of a disabled person by a caregiver is an intentional act of hate.  Pairing it with a suicide does not make the perpetrator  more sympathetic, more understandable, or less hateful.  Attempts to make martyrs out of those that execute or attempt to execute (as we see being done with Kelli Stapleton), is consistent with the strategies that terrorists routinely employ.

I demand that my Autistic child and her tribe be treated humanely. And though standing up for human rights and social justice is of critical importance and is central to my beliefs, I haven’t once resorted to threatening violence if my demands are not met. How ironic, then, that those actively engaging in terrorist-style ultimatums and threats, consider me to be a part of some sort of radical fringe movement. Chew on that!

 

 

 

 

#StopCombatingMe: Enough. And not Enough.

Image Description: Black Box with white surrender flag. Text: Surrender is powerful when your war is unjust. Peace, Love, & Support for Autistic people. #stopcombatingme loveexplosions.wordpress.com

Image Description: Black Box with white surrender flag.
Text: Surrender is powerful when your war is unjust.
Peace, Love, & Support for Autistic people.
#stopcombatingme
loveexplosions.wordpress.com

Written by Beth Ryan

The Combating Atutism Act is expires this fall.  As written, it is a source of national shame..  It is, therefore, imperative that this legislation be completely overhauled.  Or it must not be renewed.

My Autistic child will always be my child.  But someday, she will be my adult child.  I regularly get grim glimpses of her future through my involvement and friendships with Autistic adults.

The vast majority of Autistic adults that I know, and I do know many, live in crushing poverty–constantly facing lack of suitable employment opportunities, deciding between heating their homes or buying food, denial of access to needed medical treatment, and so much more.   They lack the supports and accommodations that they desperately need in order to survive.

Autistic people, particularly Autistic adults, have been forever under-represented and under-served.  Our legislators have failed to incorporate input from those that Autism legislation is intended to serve–that is, of course, assuming that Autistic people are the intended beneficiaries.  It would be unthinkable to pass legislation which dismissed the advisement of the population of any other minority group that  it is intended to serve.   Not the parents/caregivers of those minority groups.  Not the big name “charities” claiming to represent the interests of Autistic people, all the while, completely excluding them from meaningful participation.  But the stakeholders themselves.

My eight year old daughter deserves a future and Autistic adults deserve a present.  They are entitled to essential supports across their lifespans.  Reallocating funding so that she, and other Autistic people, have access to education, employment opportunities,medical treatment (especially preventative medicine), etc. will serve the interests of both the Autistic community and the country as a whole.

And for the love of all things holy, rename the legislation.  Combating Autism Act?  That’s a disgrace.  It underscores the fact that the current legislation is focused on eliminating Autistic people rather than supporting them.  Using violent language to describe legislation allegedly designed to enhance the lives of Autistic people and their families is reprehensible.  It is, in effect, sanctioning the dehumanization and discrimination that Autistic people, including my child, face every single day.

Enough combating human beings.  Not nearly enough support.
#StopCombatingMe

 

scorch the earth #lovenotfear

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

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.

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.

pacla new year