Monday, September 18, 2017

Parenting Kids with Disabilities: Autonomy and Consent

Previously on Parenting Kids with Disabilities:  Introduction / Accepting Your Child's Diagnosis / Helping Your Kids Accept Their Diagnosis / Accepting a Subsequent Diagnosis / Presuming Competence / Surgery / Adaptive Equipment / Public Interaction / Adapting / What You Can't See (Invisible Aspects of CP) / What Ableism Looks Like / Identity / Inclusion vs. Accommodation / Community / Advocacy 

Dear Parents,

It's hard to believe the final post of the parenting series is here already (aside from the conclusion post next week.)  If there's an area I am passionate about (and that I don't see covered often enough) it's consent and autonomy.


I found a letter recently, from an eye doctor in my hometown, who examined me when I was two years old.  It was a few pages long, and detailed symptoms I had, and tests the doctor wanted to try.  The letter ended by stating that the doctor did the best he could to give me these tests "given Tonia's lack of cooperation."

For context?

I lived  nearly the first full year of my life in the hospital out of medical necessity.  I needed heart surgery and  throat surgery.  I had to be trached and needed a feeding tube.  I was surrounded by medical professionals, and while the nurses loved me and took care of me, until family could come on weekends to visit - while those nurses did their best to rotate on a predictable schedule and stick with me whenever possible so I would not have trouble bonding, I learned early to fear doctors.  (When I mentioned this note from the eye doctor to my Grandma, she was quick to defend little toddler me:  "Well, of course you didn't cooperate!  You didn't like doctors!")


Throughout childhood, I experienced more surgeries.  Physical and occupational therapy.  Countless people putting their hands on my body.  I was taught about strangers, and about being able to say no if people tried to touch certain places on my body, but I found myself unprepared when a child from school came to play and crossed boundaries in every way with my sister and me.

I said I was going to go tell our parents, but the other child blocked the door.  They took advantage of the fact that I could not move fast and made a point to keep us there.  Tara also tried to leave, but the child dragged her further into our room, leaving Tara's back scraped and rug-burned.

When Mom came to check on us, the child from school acted like nothing was wrong at all.  The moment Mom went back upstairs, the torment started again.

We were seven.

[Tara and me on our 7th birthday.  We're pointing to our teeth because Tara had lost one and had a permanent tooth grow in, while I was still waiting to lose any of my baby teeth.]

I could only (finally) tell our parents the next day, after the other child had gone home.

Over the last few years, I have seen more articles about parents teaching their kids about consent and respecting their autonomy, regardless of age.  But I often wonder, where are the kids with disabilities in these discussions?

If they, like us, have experienced the distinct lack of autonomy that comes with needing medical intervention starting at birth, we don't have autonomy.  We are often not asked if we consent to someone else putting their hands on us.


This probably sounds beyond scary.  How are you supposed to protect your child when they might need painful medical procedures to stay alive?  When you cannot be there watching every minute of every day?

First, know that autonomy and consent have been woven into every single parenting post thus far.  If you want, go back and read the tips in past posts.  If you don't have time for that, let me give you the bullet points:

1) Don't Assume Your Child with a Disability is Too Young or Cannot Understand:

Start young and teach your child to respect physical boundaries.  Teach your child names for body parts and that their body belongs to them.  Respect your child's boundaries whenever possible.  Talk about it together.  ("I saw you shake your head no, so I'm going to stop tickling you, because I respect you.")

2)  Laughter and / or Hesitation Does Not Negate NO:

Model and teach that even if they laugh or smile while saying / indicating no, even if they hesitate and then shake their heads, that is them putting up a boundary and it should be respected.

3) Teach the Power of YES:

Maybe you've heard "only yes means yes" lately.  As an alternative to "no means no" (which seems to have lost its meaning.)  Teach your child that saying YES means "This is okay."

4) Arm Your Child With a Way to Alert You or Others If They Need Help:

This might be a whistle they can blow, or a safe word they can say that you know means they are in a dangerous situation and need to leave.  Make it clear you will always believe them if they come to you about a boundary that has been crossed.

5)  Take the Time to Talk About Scary Medical Things:

Talk before and after.  Before, be sure to give your child a heads up (age appropriately) about what is going to happen.  After, be ready to listen.  Your child doesn't need to hear that they needed X procedure for X reason (although this might help some kids) they need to figure out what they're feeling.  They need to know their bodies still belong to them, even though something painful or scary happened.

Please don't leave your child with a disability out of discussions about autonomy and consent.

* If you are reading this and have a disability, please know that any harm you have experienced due to a lack of autonomy is not your fault.


  1. This post (and every post you write!!) is so important. Thank you, Tonia!!!

    That last one made me think of an experience I had when I was about nine years old...I had just been told that I needed another surgery and as a nine-year-old, my way of coping with that reality was to press my face into a pillow and say, "No, it's my body and I'm not doing it!"

    And then I remember that helpless feeling in the pit of my stomach when my parents said, "You don't have a choice."

    I get that as parents they *had* to make that decision for me (and they made the right one), but that loss of autonomy is so scary, especially when you're young and scared and you don't fully understand what's going on. It's such a hard topic to handle (especially when kids are in a situation where they *CAN'T* have true autonomy, like in surgery), and there are no easy answers, but the guide you've provided here is a fantastic resource that will help many, I'm sure!!

    1. Thanks so much for your comment, K! I'm so sorry you've also experienced that powerless feeling. I hope many parents do find it helpful <3

  2. Very good post. Surgery is this regard is always tricky because kids can't consent to that. Sad this is the last post.

    1. Margot, YES. Such an important point. Kids cannot consent to surgery and often it is vital. There will be a post concluding the series next Monday, but this is the last post with new content.

  3. Dear Tonia,

    Here is what Lola wrote on THE ESTABLISHMENT about consent as an Autistic person:

    1. Thanks for this! I'm sharing it! I related a lot to it!