Dear Moderators of the Thinking Person’s Guide To Autism

Dear Moderators of the Thinking Person’s Guide To Autism,

You probably don’t know me- I’m not exactly a ‘big name’ in any advocacy circles aside from my own kitchen table- and I suspect that what I have to say is likely to be ignored given the much more powerful and influential voices that have already spoken to you on this subject. But, nonetheless, I feel compelled to write to you this week, compelled to express to you my disappointment and frustration with the events that transpired in multiple threads of your Facebook page.

I have held off on saying anything, as I believe I have the responsibility to allow Autistics to speak for themselves, first and foremost, on matters that pertain to their well-being. But as I have read the multiple posts (a few of which can be found here, here and here) it has become abundantly clear to me that there may in fact be a place for my point of view in this discussion. After all, your actions were taken in my name: the Allistic* parent.

(It should be noted here that my issues are secondary to those brought up by the Autistic population. It is not my intention or my desire to diminish these voices. Rather, I am hoping to add a new dimension to the dialogue.)

I am not here to rehash or restate arguments that have been made. Instead, I would like to respond to the one argument that strikes me as pertinent but that remains to be addressed: Your assertion that the actions taken (both in how you chose to initially censor the discussion, followed by your deleting the threads) were necessary steps taken to protect parents who were in crisis.

As a parent who was once in “crisis” when I happened upon your site, I feel that this is a subject on which I can fully speak.

TPGA, I want this to be made perfectly clear: Not only did your actions harm the Autistic population that you have claimed to represent and aimed to protect, they also harmed parents, progressive and non-progressive alike.

And there is significant damage that remains to be undone if you want this to be corrected.

First, I consider myself a pretty progressive parent. When I refer to myself as having been in ‘crisis’, this had much less to do with trying to process my son’s different neurology (after all, we did throw him a neurodiversity celebration the day that he got diagnosed as Autistic) and much more to do with the fact that I felt completely alone. I had no tribe. Everywhere I looked, I was bombarded with the “Autism Parent” culture- one in which I clearly did not belong. I needed to relate, but more importantly, I needed to understand. I needed insight. I needed hope. I needed experience.

When I found you, I felt that I found all of these things. There, in the community that you had built, was my village of like-minded parents, being led by those who were like my son.  There, amidst all the vitriol and fear, was a beacon of peace, hope and love.

(Ironically, it was also you who introduced me to Kassiane, who would become a formative role model for me, not only in how to parent my son but also in how to be a better, more intersectional and aware human being as a whole. She would also become my friend, one that it has pained me to see so pained.)

For the past two years, you have been one of the primary sources of my information on Autism and I have found tremendous guidance and support within your community.

But last week, you let me down. And you let down other progressive parents just like me.  How, you ask?

Whether it was intentional or not, by silencing the voices of Autistic people (and their supporters), you sacrificed one of the only spaces on the internet where I have not felt ostracized and rejected for my progressive views. In essence, by deleting our words and silencing our guides, you allowed the majority viewpoint of the ‘anti-Autism’ parent to permeate and poison our community- one of the few where Autistics and Progressive Parents were able to come together and work towards the common goal of Acceptance and love.

This was tragic and disheartening. But the ramifications are significantly worse than just losing my sense of community.

Inadvertently, what you have done has resulted in significantly weakening the headway that many of us progressive parents have made in creating a community in which Autistics and Parents can work together for change.

Over the course of the last week, I have watched as my friends and role models have posted repeatedly their reservations that ‘no space can be safe’ unless it is exclusively Autistic. I have watched the Autistic self-advocacy community recoil in fear of this type of event reoccurring. I have sensed trepidation in my relationships with them; have witnessed the chasm between us growing ever larger.

I believe that, for the most part, I have been able to mitigate this situation, at the very least within my own personal relationships. I have taken the time to reach out to my friends, to express my concerns, to re-identify myself as a committed supporter and friend of the Acceptance movement.

But it would be naïve for me to think that there is not damage to repair. And it would be naïve for me to think that the bonds that bind our two worlds are not weakened by this situation.

A fragile and tenuous relationship has been fractured; our communities once again being presented as ‘divided’.

And what is the most frustrating aspect of that is that the vast majority of posters on those threads, parents and otherwise, were in full agreement with each other. Those who were saying harmful, bigoted things were a very tiny, very vocal minority.

Unfortunately, because the threads were deleted, that fact will be lost in this discussion. This will be perceived as TPGA favouring “Paaarents”- and all parents, progressive and otherwise, have been tossed under the bus.

That is beyond disheartening. It is dangerous to our larger efforts, and it is harmful to my young son whose success and happiness depend on my ability to forge relationships between the neurotypical and neurodivergent worlds.

So, on that front, you have let me down. And you have let down parents like me.

But that’s not all.

Perhaps the cruelest, most dismaying aspect of all of this, is that you have actually let down the “parents in crisis” as well.

By failing to address the root issues that these parents were facing (ie: the genuine belief that their children are problems that are happening “to” them, as opposed to human beings that need to be understood, respected and connected with), you failed to address the one thing that could actually help them move past the crisis.

Unless the root of a problem is addressed, the problem will continue to resurface.

Parents who refer to their children as ‘animalistic’ or ‘psychotically violent’ are parents whose issues extend far beyond the immediate situation. Yes, they need crisis support. But crisis support, which validates the person, does not necessarily require validating the dangerous and harmful ideologies that are contributing to the crisis. That's one of the fundamental principles of non-abusive crisis management. 

It never occurred to me that I would have to explain this to you- you who have taken a strong stance against harmful language when discussing the murder of Autistic/Disabled people.

Words matter. Language matters. This is particularly true within the Allistic population that places an inordinate amount of importance on the ability to speak.

Just as we cannot allow for words like “empathy” or “understanding” to dominate the dialogue surrounding violence towards those with disabilities, so can we not allow language (and beliefs) that perpetuates dehumanization. This is precisely what words like ‘animalistic’ do.

In the threads, a significant amount of important information was conveyed to the parents ‘in crisis’. Genuine advice and support was offered from people from all walks of life. Yes, some of that was coloured with language that may be deemed ‘unparliamentary’ (though it is equally ‘unparliamentary’ to use ad hominem and attack your opponent without using swears…but I digress). But most of it was good information. Important information. Valuable information.

All of that information was lost. Lost to the OP, lost to those who commented in support of her, and lost to any lurkers in crisis who might have been following along.

So where will these people in crisis turn when the information that they are seeking is removed from them? Whom will they ask if they can not ask Autistic people directly, in a community that is safe for Autistic people?

I don’t have the answers to that. I desperately hope that they find other resources focused on support, acceptance and love. But I know all too well that these are few and far between in the sea of hatred and fear mongering that dominates the Autism Parent discourse.

Yes, TPGA, you let parents down. We came to you seeking guidance.  We came to you seeking help. We sought out the community of people you have built. And you, in what I believe to be a move of panic and fear, silenced this community.

By failing to delete and moderate the harmful comments, you inadvertently validated them.

By censoring and removing Autistic voices, you took away the primary reason that most of us are on your page to begin with.

And by deleting the threads in their entirety, you also deleted the wealth of experience, knowledge, perspective and advice that had been shared by hundreds of likeminded people, Autistic and Allistic alike.

TPGA, I was following those threads very, very closely. You see, I was sick last week and had little better to do than read every single notification that hit my Facebook feed. I read every single post. I took in every single comment. And I, myself, commented often- something that is actually very rare for me to do.

I saw how quickly the threads moved. I saw how overwhelming it all became. I understood your need for immediate and decisive intervention.

But how this intervention was handled was disastrously foolish and short sighted. And the ramifications of the decision will likely continue to divide our already stressed community more than we can afford.

In the future, I hope you will consider the following

1. Apologize. For real. Truly and sincerely. While you can not undo your decisions, you need to acknowledge the harm that these have caused and take responsibility for how that has affected your community. (Yes, this includes apologizing to Kassiane, whom I believe firmly was scapegoated in this situation. I will not touch more on that in this post because others have already said what I have to say. But I am deeply disappointed and disgusted by how she has been singled out and mistreated.)
2. Get more mods. (No, really. Just do it. Like, yesterday.)
3. Learn how to hide threads as necessary to give you more time to properly address them, including culling harmful posts as per your comment policy. There is no limit on how many times a thread can be hidden and unhidden, and this can be a useful tool for moderating discussions that are moving too quickly to moderate in real time. (If you do this, explain your actions and supply an approximate timeframe for when the thread will be made available again.)
4. Consider the implications of deleting threads in their entirety, including the disrespect that it shows every single person who took the time to post on them in an effort to share their knowledge, information and perspectives.
5. Apply your rules fairly, with an understanding and respect for the fact that certain language/stereotypes can be greatly triggering to many Autistic people and can result in ‘crises’ of their own that are at least as valid as those of the parents.

I hope you consider these actions, but I’ll be honest when I say that I will probably never know if you do or not, since I no longer feel that your community is a safe place for my family and am unlikely to revisit it.

I am not Kelli Stapleton. But I wish Issy had been my daughter.

I am not Kelli Stapleton.

I am Zita, Sam and Charlie’s mom.

I am my own person and I am capable of making my own decisions. I am capable of acknowledging my failings and seeking support and help in being a better person and a better parent to my children every day.

What is often forgotten when discussing what happened to Issy Stapleton is this:

There was a series of events that led up to the awful, horrific climax of the attempted murder on her life. And these were not as they have been so often depicted by the media and by the cult following of the Status Woe.

Yes, there had been a long time struggle; one in which systematic and chronic abuse took place. Yes, there had been fights and yes, there had been harm.

But what is neglected is that- long before the attempt on her life- Issy Stapleton was the victim.

She was the one being fought. She was the one being abused. She was the one being harmed.

It was Issy who was fighting back in self-defense. It was Issy who struggled against dehumanization and degradation. It was Issy who lived a life in fear, in captivity, in oppression, and in abuse.

Long before Issy Stapleton was the victim of an attempted murder, she was the victim of a parent’s oppressive quest to destroy who she was.

What is also forgotten too often by the mass media accounts is this: Issy Stapleton was a child.

Kelli Stapleton was an adult.

Kelli Stapleton held the power in the relationship. Long before Issy had grown to be a strong young woman capable of fighting off her aggressors, she had once been a baby. A toddler. A preschooler. A tween. A pre-teen.

And in each of these stages of her life, Issy held no power.

Her communication was rejected. Her voice- her body- was silenced. Her rights were ignored. Her life was trivialized, ridiculed and even jokingly dismissed.

Repeatedly. For fourteen years.

From her very first posts, Stapleton’s obsession with ‘fixing’ her child indicated a mentality that extends far beyond the scope of mental illness.

So no, I am not Kelli Stapleton.

And I never could be.

Because what Kelli did- what was done to Issy- started a long time before she lit the charcoal barbecue. It started long before she struggled with the school system and reached a breaking point.

It started when she decided that her “wants” for her child should trump her child’s “needs”. It started when she decided that her child’s life was a burden and not a gift.

Kelli Stapleton’s decision to end her child’s life started when she discarded the reality that her child was a human being.

And while I may not be immune to mental illness, while I struggle with my own set of demons and obstacles to overcome, that is simply not something I could ever do.

I could never believe that my child does not have a life worth living.

My child is a person. My child is a human being. My child has the right to life, independent on how that affects me.

These are immutable facts, things that simply can never change.

I am not Kelli Stapleton.

I am Zita. I am Sam’s mom.

And I love him enough to recognize that his life, as unconventional as it may be, is valuable and beautiful.  

That is my truth. That is my reality.

My decision to not be Kelli Stapleton started the day my son was born.

And that will never change. 

I am not Kelli Stapleton. But I wish Issy had been my daughter. 

Issy, I promise you this: I will do better for my son than what has been done to you. 

Your pain will not be forgotten. 

I am Jeffrey Dahmer. (PARODY POST)

This post is a parody of another post that I will not direct-link here, but may be required reading for context. If you would like to read it, please use this link: http://www.donotlink.com/framed?557651

The original post is one that argues that all people are capable of harming their children if they are pushed too hard by stress in life. It uses the case of Kelli Stapleton and argues that Stapleton's story should serve as a reminder to us all that we are all capable of 'breaking' and committing equally horrible acts in moments of hopelessness and desperation like what the author claims Kelli Stapleton experienced. This claim is not substantiated by any research or facts.

I am Jeffrey Dahmer. 

And you are too.

If you think you're safe, if you think you are above succumbing to the insanity of mass murder and rape, you're wrong. 

Mental illness, (in this case 'borderline personality disorder') does not discriminate. Life circumstances don't discriminate. We are ALL wired to break if given the wrong circumstances. (And when we break, we are capable of any amount of evil. Rape, murder, necrophelia....even filicide...) When you are given more than you can mentally handle- and it doesn't have to be the social isolation, tension and abuse Dahmer suffered as a young child with one parent who was a a suicidal drug addict, and another who was a hardly present workaholic- the brain chooses dissociating over enduring the reality that is too hard to battle. 

Some things are just too much. 

In the years since Jeffrey Dahmer (which include the vast majority of my life experiences), I've battled my own depression. My own mental illness. This awful (terrible, incomprehensible, soul shattering? - there is no word for it) American tragedy has forced me to recognize that if one person can be a serial killer, anyone can. I could be. 

That is terrifying.

In writing a lot about mental health issues, I've encountered many other mothers, fathers, and caregivers that find themselves in Jeffrey Dahmer. That see how things can go so awfully wrong. It's not one week that breaks the backs of those who carry loads too heavy, it's a lifetime of little things, big things, sad things (like the ongoing child neglect and social isolation that Dahmer lived), ...it adds up to a weight that too many crumble under, that too many could crumble under.

So what do we do now? What have we learned from Dahmer's crimes? How do we move forward in a world where we are all one step away from mass murder?

For me, it's finding my voice. It's saying what is the most painful even when I know it's putting entirely too much out there (I mean, really- who tells the world that they feel a strong connection to a child killer?) It's not standing silent in the fact of those who are foaming at the mouth to vilify me (because the death of children is clearly all about me) and anyone else who speaks anything contrary to the idea that killing children is a total understandable thing to do when you've lived a tough life. 

It's speaking the truth of what  I believe too many of us parents and caregivers experience, but are too afraid to say: My life sucks too much sometimes. I should kill people. 

Sure, we could be offered all the mental health support, therapy, medication and even- heaven forbid, intervention with removal of all vulnerable children from our care- but selfishness seeps in. Being overly self-involved and unable to see that my child's life is not actually mine to control or end does things to a person that cannot always be predicted. 

It's also getting help. Well, sort of. Because if you refuse the help and go one to kill a bunch of kids, that's ok too...

It's getting on medication and bleeding in front of you in any damn forum where people will listen to my martyrdom and to my therapists (which I refused...because again, the whole not wanting help thing is pretty big on the selfishness scale).

It's saying, "Today is too much, I need your help." and not apologizing for it. (Or not asking. Because if you don't, it's ok. We get it. We understand that refusing help is a completely natural thing to do. Even if it means that you are going to kill babies.)

But I still get it wrong. I would like to believe that I have all the answers- or even just the ONE answer ("Are you going to kill your child? No.") But the questions change too quickly to keep up (or they don't, and I just want to not answer it).

What I face today will be vastly different from what I face a month from now. And that might be really tough for me. So if I start killing children, I hope you'll show me some empathy. 

There are no easy answers. (Except "Killing kids is wrong." But let's not talk about that one.)

There is only honesty. (Or what I want to project as honesty, while completely evading 90% of the facts)

Have the courage to ask for help (if you want.) And have the courage not ask to help too, because that's your right.  (Dahmer didn't for help...neither did Stapleton)

Have the courage to throw a fit and cry and get it all out (on the internets, where everyone in the world can share in your misery and raise you to hero status...just like Jeffrey Dahmer.)

Have the courage to do whatever it takes to take care of yourself (even kill your children) so that you can take care of your children (wait- I thought this entire post was about the fact that even if you do all the right things, you are STILL just like a child killer and don't have the right to judge or say that you would never hurt your children because you NEVER KNOW WHEN IT WILL BE YOU???)

Because, in the end, if someone like Jeffrey Dahmer could break, anyone can.

Even me. Even You.

This post is a parody of another post that I will not direct-link here, but may be required reading for context. If you would like to read it, please use this link: http://www.donotlink.com/framed?557651

The original post is one that argues that all people are capable of harming their children if they are pushed too hard by stress in life. It uses the case of Kelli Stapleton and argues that Stapleton's story should serve as a reminder to us all that we are all capable of 'breaking' and committing equally horrible acts in moments of hopelessness and desperation like what the author claims Kelli Stapleton experienced. This claim is not substantiated by any research or facts.

Real Bras

Tonight is another throwaway post. Why? Because I went out like a grown up and had a wonderful at a friend's theatrical dance performance. And now it's late and I have to be up early in the morning.

But as I close off my evenings and prepare for bed, I'm moved by a subtle and simple change in my life.

Lately, I've been wearing more and more real bras.

My daughter, pummelling towards toddlerhood like a speed train, is slowly starting to slow her nursing down. Day by day, the necessity of the staple of my wardrobe for the past four years- the nursing tank- is starting to slowly fade away.

This is bittersweet. Bitter in that I have treasured the breastfeeding relationship I have had with my babies, and this small step forward reminds of the fact that I am coming close to the stage where 'baby' will be a thing of the past for me.

But also sweet in many ways. My babies-to-me are becoming amazing tiny people. They are learning and exerting independence and are constantly surprising me with their knowledge, their wit, their curiosity and their unrelentless and bold personalities.

As my baby days fade into the past, they are replaced by brighter and fuller days of toddler, preschooler, and- soon- child, preteen, teen and adult. It goes by so quickly, and yet is so deeply enriching that I am left nostalgic...not necessarily "wanting more" but panged by a sweet longing and yearning that will follow me my entire life.

And while I am not there yet, I know that soon my body will have done its duty. It will have brought to life two amazing humans. It will have fed them, kept them warm, nurtured them and soothed them. And I wonder if, when all of this is said and done, I won't always remember their phantom hands stroking my body as they nuzzled into me, safe and secure in my arms.

Bitter. Sweet. Like so much in this parenting journey.
Happy. Sad.
Celebration. Loss.
Hope. Grief.

The yin and the yang of life lingering in the space between her face and mine.

It has been glorious to nurse these nurslings, and it will be sorely missed.

But to every time there is a season.

And I'm excited to wear real bras again. ;)

Back on the happy tracks

I'm half way through a real blog post. I was going to finish it but I decided to clean instead.

And then I had a meeting with the kids' (yes, PLURAL woohoo!) new part-time day home provider to discuss supports for Sam during his out of school care.

Then we celebrated the awesomeness of that meeting with french fries.

Then we went swimming. Well, Sam mostly floated around- happy as a clam- while I treaded water like a frantic cat.

And then I decided to go to Zumba. Because I could. And it was awesome.

And then bedtime and dinner and another 30 minute jog to hit my step goal (I've gone up to 15K a day)

And then, an hour of catching up on work since I'm a little behind today...while listening to Orange Is The New Black with my awesome hubby.

And now it's 1030. And I don't want to weigh my mind and my body down by taking on a really serious topic this late at night.

So, you get a throwaway post. Because sometimes feeling good really says it all...

:)

Conversations with Charlie

Charlie: Momma...wassdat?
Me: Charlie, that's a phone.
Charlie: OH! A PHOOONE?
Me: Yes. You know that.
Charlie: I know! So silly! Silly Girl!!!
Me: Sigh...
Charlie: GOOD GRIEF!

***

Charlie: Guppies?
Me: No Guppies until after lunch.
Charlie: Guppies now?
Me: Lunch now.
Charlie: NOOO! GUPPIES!!!!
Me: Hot Dog?
Charlie: Oooo! DIP DIP?
Me: Yes, you can have some dip dip too!
Charlie: DIP DIP!!! GUPPIES!!!
Me: Sigh.
Charlie: NOM NOMMMM <grin>

***

Charlie: Iphone?
Jason: No Charlie, Ipod.
Charlie: Oh...Iphone!
(note: no one in our home currently owns an iphone, nor have they ever.)

***

Seriously...this child.

Charlie, 18 months old. 

Richard Dawkins is an asshole Or "19 Weeks"

(This is a "two day" post because it took me two days to write it due to the significant amount of emotional stamina required to write it. So I think it qualifies for both Day 8 and Day 9 of the SBC)

Content Note: Discusses infertility, miscarriage, abortion, medical malpractice, sexual assault, medical/institutionalized racist/misogyny, ableism.

This post was inspired by Richard Dawkins's ableist and offensively anti-woman comments surrounding the immorality of not aborting fetuses that test positive for Down Syndrome. This blog post touches on some extremely personal and difficult to write about topics and, for that reason, comments on this post have been turned off.

***

I was 19 weeks pregnant.

19 weeks and three days, to be precise.

It was February 5, 2010, and it was unseasonably warm for this time of year. It reminded me of my wedding, back in February 2008, where the sun shone so brightly that it practically melted away all the snow while we were in our ceremony. I had to wear rubber boots to pictures. It made for some interesting shots.

It was a warm, beautiful, perfect day. Like that one.

And I could not believe that I was going to get to see my 19 week old baby.

Fetus. I was going to get to see my 18 week old fetus. That's what they call it, after all.

But after years of infertility and 7 miscarriages, all I knew was this. This fetus moved inside me. It had finger nails and eyes. It had a personality already- I knew it's playful times and it's quiet times. So, while I won't argue with the medical community about the fact that it was a fetus, please try to understand that- to my heart and to my soul- it was every bit as real a baby as a baby can be.

And in only 22 more weeks (or so) it would be mine to hold.

The ultrasound went beautifully, though the baby wasn't inclined to show me its gender. It didn't matter. "Healthy baby" is all I cared about.

"Born alive" was my personal mantra.

I was filled with beauty and joy, but still didn't share much about the experience on facebook or otherwise. No belly pics. No ultrasound images. No daily updates.

I'd been burned before, too many times to take the risk.

One week later, on February 12th, I received an extremely unexpected phone call.  It was from my OBGYN's office, asking me to call them immediately. So, despite being at work and surrounded by colleagues, I picked up my cell phone and called.

I was expecting an appointment to be rescheduled. I was expecting possibly a problem with my doctor's schedule, requiring a change of practitioner.

I was not expecting to be transfer to my doctor, to be told that he would have 'preferred to tell me in person, but that since he was leaving for Mexico for two weeks and the window for termination would be closed by the time he got back, this was the only choice.'

I did not expect him to tell me that there were some "irregularities" with the pregnancy- and showed what appeared to be a pericardial effusion, a pleural effusion, some dark spots on the brain (probably a subdural effusion) and a 'two vessel chord' (single umbilical artery), all of which lead him to conclude that the fetus likely had a condition called Fetal Hydrops.

I could barely get the words out of my mouth: "What does that mean?"

He launched into some complex medical explanation, and I cut him off:

"But doctor, what does it MEAN?"

"It means," he responded, "that your baby is unlikely to survive to term. And if it does, it will likely have little to no quality of life and will die shortly after delivery. It also means that there is a risk of hydroencephalis, a condition that could lead to fatal complications for you if it develops too far."

"So...my baby is going to die?"

"That is likely. And continuing with the pregnancy is extremely risky. We are going to want to have serious discussions surrounding whether or not you should consider termination. Babies born with these types of conditions have no quality of life to speak of."

No quality of life to speak of. 

The words felt like they were hanging in the air.

The conversation went on for several minutes. I don't remember much of it. I do remember telling the doctor that no, we would not be terminating the pregnancy- certainly not without receiving a second opinion, and I remember insisting that we be booked at the perinatal clinic for follow up and  My husband and I had already discussed this several times throughout our marriage- what would we do if?- and we knew that it was not a route that we could take. Not after 7 miscarriages.

(This is not a religious or moral statement on abortion. We are both supporters of a person's legal right to body autonomy, including the right to terminate an unwanted pregnancy, and Mr. Dulock is agnostic, bordering on atheist. But again- you have to remember- emotionally and psychologically speaking, this was our child. And we were invested. We were as 'all in' as you can get. We knew and understood the risks, but this was our child. Our child who kicked my belly. And had finger nails. And got the hiccups from 10am until 1130am every single day...)

Of course, it was still a conversation to be had, and it was a tough one. Many tears were spilled over the course of the next several days. There were so many unanswered questions. So much fear. So much confusion.

And we were alone, abandoned by the medical system that was supposed to guide us.

So, I did what I do best. I turned to the books. I started to pour over medical journals, by the dozens. I learned absolutely everything I could about the various irregularities, compared studies examining quality of life in FH, read about care for fetuses born with FH as well as antenatal treatment options. I discovered that up to 50% of effusions on ultrasounds can actually resolve themselves and can be the result of issues with the U/S picture quality, angle, or even caused by excess fluid if the mother has had cold or flu recently (which I had).

I also read up on the laws surrounding abortion in Canada. I learned that my doctor was making a very preemptive recommendation based on what I can only assume was outdated information and a desire for expediency. It is also possible that he was trying to 'spare my feelings', but I'm not the notion of what was really best for me was that strong a motivator given that he gave me the news on the phone, while on his way out the door to Mexico.

He lost my trust. The entire system lost my trust.

I armed myself with knowledge- not from Dr Google, but from actual doctors and scientific studies.

I was ready for battle when I walked into the perinatal clinic two weeks later, ready for my war to begin...

It was pretty anticlimactic, as far as 'wars' go.

The ultrasound showed a few abnormalities that would "need to be monitored" but the perinatologist said that he saw no indication of pleural or pericardial effusion, that the brain appeared to be developing properly ("if perhaps a little on the large side...") and that he saw "absolutely no reason to recommend termination of the pregnancy."

In fact, they weren't even sure why I was at the clinic to begin with, aside from the fact that I was showing signs of HELLP syndrome, a condition which would eventually land me an extended stay in the hospital and a premature delivery.

Developmentally, the baby was pretty close to perfect.

When I asked how the information could have changed so dramatically over the course of just to weeks, I got an 'unofficial' explanation that it was not uncommon for doctors to jump the gun on termination around the 18-20 week mark because otherwise women aren't able to access an abortion if things get worse.

"Abortions in Alberta are only performed up until the 20th week of gestation, unless there is a medical risk to the mother's life."

My jaw dropped.

Could that really be what just happened here? On the off chance that the complications did not resolve themselves, the assumption was that I would want an abortion, would regret not having one and would no longer be able to access it as a medical option?

That was when my rage turned to fury.

You see, part of my 'privilege' package is that I am rather well educated and a very strong reader. I also have gifts when it comes to information recall. My formal education was in political science and sociology, which results in my having a better knowledge and understanding than many of Canada's history and laws.

And I knew as a fact that abortion in this country is completely legal and un-legislated. There are no laws outlining how and when a woman should have access to an abortion, which inevitably results in the fact that women have the right to terminate their pregnancies up to and including the moment of birth.

However, it is slightly more complex than this.

You see, in Canada, the professional medical societies enforced their own standards of abortion law by creating unanimous policies regarding abortion access. Absent medical need (read: risk to the mother), women have an extremely difficult time accessing an abortion in this country past the 24 week mark.

Now, I am not going to comment on whether women *should* be able to access abortions passed this point. Nor am I going to entertain debate on whether or not abortion should be legal. But it does concern me gravely that it is doctors that are controlling women's rights to choose- doctors who have not been elected, are not held accountable to the public body in any way, and do not have to exercise transparency in their medical or policy decisions. There is no platform for debate, no special witnesses from outside the medical profession who can offer scope beyond the 'body' and discuss the social implications of abortion access.

And, I'm sorry but that's not how a democracy is supposed to work. Doctors should not be lawmakers.

It shouldn't be up to doctors to use policy to dictate what I do with my uterus; nor should it be up to bio-ethicist like Richard Dawkins to attempt to use their influence to do the same. Women must maintain the legal right to their bodies, but this legal right is meaningless if there is no practical way to apply it.

(Again, please note that our decision to not terminate our pregnancy had already been reached here.)

But the thought of how many women who had never had the opportunity to have long discussions surrounding disabilities, or who lacked the resources and skills necessary to conduct thorough research on their own, or who lacked the ability to self-advocate and demand a second opinion...the thought of them being in my shoes, being told that their baby was going to die and was possibly going to kill them while at it...that thought turns my stomach.

Let me be clear on this fact: I believe that women should have the legal right to terminate pregnancies for any reason they so choose. The law is not there to legislate morality (really, it's not.) and there is no way, at thist time, to protect a woman's right to bodily autonomy and integrity without this fundamental right.

I believe that women should have the right to choose this for financial reasons, for personal/emotional reasons, for medical reasons and- yes- even because they do not want to give birth to a baby with disabilities. I believe that a woman should never have to justify or rationalize to me- or any one else- her reasons for choosing to exercise control over her own body.

Women should have that right just as much as I had the right to know that there was no circumstance under which an abortion would be the right choice for me. (And given this story, I feel pretty comfortable saying that...) My choice is no more or less valid than any other woman's choice; my choice should impact no one's body but my own.

I do not have a stance on "gestational age" because the percentage of terminations occurring past the "20 week" mark are infinitesimal and are limited almost exclusively to situations where the mother's life is at risk. This is as true in Canada (less than 2%) as it is almost all over the world (in US, 0.08% of abortions are conducted post 24 weeks).

I believe in the right to choose, even when this choice is vastly different from the one that I would make.

BUT I DO NOT believe that the medical system should have the right to sway that woman's opinion because of a systematic and incomprehensible disdain for the lives of individuals with disabilities and differences.

I do not believe that it was ok for the medical system to use very scant information to make a premature judgment and attempt to influence my decision by using vague and undefinable terms like "quality of life" to encourage me to terminate my 'irregular' pregnancy.

And I certainly do not believe that it is ok for them to do so because their own policies make it complicated for women to abort after a certain time frame so adding pressure on them to make quick (and possibly even) premature decisions to fit into "20 weeks of less" Canadian status quo

When the medical system throws around terms like "Quality of Life", a term that lacks both definition and context, and fail to provide sufficient time and support for women to sort through the information regarding the decision to terminate a complicated pregnancy, what they are doing is creating a layer of pressure and exerting a completely inappropriate amount of authority and control over the decision-making process.

The reality is that women who choose to use medical practitioners in their birthing journeys put a significant amount of trust into these individuals. We expect them to be transparent with their biases, and to be supportive of our decisions and our right to oversee our own medical care. We also expect them to comply to the ethical concept of "informed consent", a process that requires not only a full transparency in the information provided (pros and cons of the procedures itself, and of the decision to not have the procedure) but also should include a disclosure of personal bias when one exists.

Few would argue that a doctor treating a woman whose fetus has tested positive for Down Syndrome, who happens to be the parent of a child with Down Syndrome, must be transparent of her likely bias towards continuing the pregnancy or must- at the very least- recognize this bias and ensure that it does not interfere with medical care. This is likely not a point that would be argued by many.

However, what we fail to recognize is that the same must be true for the doctors who have an ableist bias- a pervasive belief that anything that is not deemed 'typical' in terms of is somehow inferior, or a problem to be fixed. This mentally has been the dominant one in the medical field, likely since the birth of the field itself, and has led to the medical profession performing atrocities that- to this day- boggle the mind.

Let us not forget that it was doctors who created and undertook the Tuskegee Syphilis Study (In the Negro Male) which followed a group of 600 poor, African-American men, 399 with untreated syphilis, for 40 years to examine the effects on their bodies. These men were not only refused treatment for their illness, their families were as well.  This is only one of many historical examples of medical racism.

Let us also not forget that it is the medical profession that gave us the term "hysteria", blaming 'wandering uterus' and other nonsensical conditions of both the physiological and mental variety (research today indicates that the symptoms used to diagnose hysteria would most closely fit those of PTSD, usually resulting from sexual assault), allowing medical practitioners to assault women's bodies to 'manually manipulate' or 'orgasmically stimulate' as a cure. Again, this is just one of many examples of the atrocities the medical system has perpetrated against women.

Let us also not forget the fact that, up until 1974, homosexuality was considered a "mental illness", and curing the condition was something strongly advocated within the medical community. (Note: "Curing" homosexuality used the exact same process that many people still use against Autistic people to attempt to "cure" them of their condition.)

So let's not kid ourselves about the fact that the medical system, while oftentimes an indispensable force of greatness, is also often a force of great harm. Bioethicists (which, ironically, is the profession of Richard Dawkins) must begin to consider that social/medical bias against disabilities is a topic that must be acknowledged, discussed, and- ultimately- discarded in order to protect the interests of this all-too-often vulnerable population.

Continuing to forward arcane ideas of "quality of life" without either a) a sufficient and comprehensive definition that includes not only the medical disability model, but also the social model, b) providing women with as much objective and comprehensive information regarding not only the risks but the positive outcomes of those living with complex medical conditions, is a failure to acknowledge bias and prejudice towards those with disabilities and- unchecked- results in a continued, unrecognized predisposition towards eugenics.

It is also a continued violation of the principles of women's right to body integrity. Making the choice to terminate or not terminate a pregnancy is only really a choice when the information that you are using to make that choice is accurate, comprehensive, and as objective as humanly possible. In the absence of objectivity, a balance of opposing points of view should be provided to allow for as thorough an understanding of the situation as possible.

Failure to ensure that these measures are in place is to allow doctors to continue to exercise a completely inappropriate amount of influence over a mother's decision to terminate a desired pregnancy, a terrifying reality that I have lived first hand.

Put bluntly: If my doctor had his way, my son would not be alive today.

I am grateful that I knew and understood that the choice was not his to make. 

(*It should be noted that I used the same doctor for the birth of my daughter. With this exception of this one issue, his care was exceptional and when I made my intentions clear regarding my pregnancy, he respected my right to do so.)