Unpacking "I Can't": An Interview with...Me

462 words

4 minute read

“I can’t.” Sarah says, and the words taste like victory in her mouth. Growing up unallowed to say the C word, Sarah relishes it now.  “I can’t open this.”

***

When a friend of mine read this excerpt of my current novel, her reaction was huge.  And she recognized, as a fellow disabled person, how momentous it was for a disabled character to be able to utter the words, "I can't."

That led to a pretty deep discussion and that led us to discussing the possibility for a blog post, and that led Tara to suggesting that we talk to more of our disabled friends and acquaintances to find out their relationship with the phrase, "I can't."

So many friends volunteered and their responses were so good that I decided to share their interviews individually.

Here's mine:

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[A black and white photo shows Tonia, her head in her hand. She's not smiling.]

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Were you allowed to say “I can’t” when you were growing up?

TONIA:  I think, especially in physical therapy (from ages two to twelve) I was not listened to when I said, “I can’t.”  I was instantly told, “Yes, you can.”

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What do you mean as a person with a disability when you say, “I can’t?” (Are there cultural nuances to the phrase that get misunderstood?)

TONIA:  “I can’t,” for me, means I literally cannot physically do what’s asked of me.  Sometimes because of my CP and sometimes even because of my C-PTSD.

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What risks or vulnerabilities exist in saying “I can’t” as a disabled person?

TONIA: At worst?  Assault.

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Do you have any memories of saying or wanting to say, “I can’t?” How was this limit received? 

TONIA:  I rarely said, “I can’t”, but when pushed to walk with one crutch while carrying something in my free hand and being screamed at the entire time.  My spasticity kicked with the stress of the situation and I fell on my knees.  I was pulled to my feet by my hair and told to “stand the **** up!”  

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What message was conveyed to you because of moments like this? 

TONIA:  I felt worthless and degraded.  I felt deeply misunderstood and deeply unloved.

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Have your experiences contributed to the way you set or struggle to set boundaries?

TONIA: The first time I set boundaries as an adult, it was terrifying, and led to rounds of harassment on and off for years.  We still occasionally deal with this, but do our best to keep our boundaries in place.

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Anything more you’d like to add?

TONIA: When a disabled person communicates a limit, practice believing them and offering help, rather than pushing them to ignore it.

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UNPACKING "I CAN'T" SERIES.  INTERVIEWS WITH: 

 Tonia / Tara / Amanda / Alice / Emily / Kayla / Anonymous / K

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What's So Wrong With Self-Advocacy?

1,162 words

9 minute read

“How come you can advocate so well for other people, but you can’t do it for you?”

“[Self]-advocacy only counts if you talk face-to-face, because people take writing the wrong way.”

These are some harmful things I was told 5 years ago in the aftermath of dealing with countless access barriers, blame for those barriers and resistance when I put up a boundary to protect my health and safety.  

Related: Things I Want to Tell You But Can’t

For these reasons and more, Tara and I want to unpack what’s so wrong with self advocacy?

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What do we mean by “self-advocacy?”

TARA: In simple terms, self-advocacy is defined as speaking up for oneself.  

The word seems to have been first used by activists during the disabled civil rights movements of the 1960s and 1970s. Now, though, self-advocacy is most often used by a majority nondisabled population. The education system, and by extension, nondisabled parents of disabled children, view self-advocacy as a central part of most IEPs.

For the purposes of this post, we will be looking at the term through a nondisabled lens.  

TONIA: I honestly despise the term self-advocacy because it seems to now be exclusively used by nondisabled people about us.  They never use the term about themselves.  It seems to be something they feel they need to teach us.

It grates on me the same way “special needs” does in the sense that I don’t believe we need a special term for something that everyone does.

TARA: It does feel like a redundant (and harmful) euphemism!

***

Isn’t self-advocacy a good thing?

TARA: Is standing up for oneself good? Sure. However, self-advocacy on its own in the face of systemic oppression does not lead to systemic change.  Self-advocacy is now largely used to place the onus of systemic oppression onto disabled people.

TONIA:  Thank you for summing this up so well!

***

How is self-advocacy connected to ableism?

TARA: Self-advocacy attempts are too often not taken seriously. They are fodder for a cute story on Facebook or an “inspirational” moment. The other side of the situation is the reality that sometimes, self-advocacy of a need or a boundary leads to abuse. Both the inclination to minimize and abuse are rooted in ableism. 

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How is self-advocacy about nondisabled people?

TARA: Nondisabled people will often center themselves or each other in a disabled person’s self-advocacy attempt, because of their role in helping the disabled person to master the skill. Either the disabled person is expected to share the achievement, or their achievement of self-advocacy is solely due to the tireless work ethic of nondisabled individuals in a disabled person’s life. 

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How might disabled trauma responses be at odds with self-advocacy?

TONIA: My primary trauma response (when not encountering threat or violence) was to fawn -- that is to immediately move to people-please to avoid any conflict.

That meant that telling someone who wanted to help me “I can do it myself” felt dangerous.  Because as a lot of nondisabled people know, refusing help by nondisabled people can make them mad.

[Tonia and Tara just before their eighth birthday, quietly ogling a wedding cake.]

Being forced to say no to offers of help (even from authority figures) felt like trauma to me and often moved me into my other primary trauma response, which was to freeze.  Either way, I was not doing self-advocacy right according to nondisabled people in my life.

TARA: There is an entire compliance culture that is specifically in place when a person is disabled. Disabled people are expected to endure painful or downright abusive therapies, surgeries or other "treatments." We often rely on a freeze or fawn trauma response as our only course of safety. And then, somewhere down the line in school during an IEP meeting, we are "called out" for the involuntary ways our brains are trying to keep us safe. We are too compliant for the education system. We've failed at being assertive and need a new goal - self-advocacy. This puts the onus of our oppression onto us. Any new issue that pops up is not due to systemic oppression, it is due to our failure to self-advocate. 

(And if we succeed at it? Well as I shared earlier, that is either really cute or inspiring, or our parents and team pat themselves on the back for doing such a good job with us.)

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How is self-advocacy weaponized to keep disabled people compliant?

TONIA: Having grown up with self-advocacy as a goal on several of my IEPs, I know firsthand how this goal is used to silence us.

My so-called “goals” for self-advocacy were based on my teacher's and or my peers' judgement. They (as nondisabled people unfamiliar with my disability) were in charge of determining what I needed help with and what I did not.  

So, nondisabled people decided when I needed help.  Add to that the layer of forced politeness.  I had to “appropriately turn down help.”  And I also had to instinctively know when to thank “helpers” who swooped in and gave help I did not need, lest I get noticed by a nondisabled adult and the issue reported at the next IEP meeting.

And yes, I went to school a million years ago, but I see evidence of this even today.  Nondisabled parents will say:  “I taught my child self advocacy, and they used it against me!” when their disabled kid wants to choose their own hairstyle.

Self-advocacy is used as a tool to keep us compliant and to control us.  Because whenever I (or other disabled people) actually advocate for ourselves?  We are called rude or angry or ungrateful.  The flipside of this?  We are also blamed for being “overly compliant” even as teachers and parents admit having compliant disabled students is easier for them.

TARA: You touched on a really important point, Tonia. Tone-policing is a major problem for marginalized individuals. When it comes to self-advocacy for us as disabled people, the nondisabled expectation is that we do so in a calm, polite and mild manner. Attempts to stand up for ourselves that fall outside of these expectations are labeled as outbursts. Nondisabled reactions to a disabled outburst can range anywhere from disapproval to punishment, abuse, incarceration or homicide. Multiply marginalized disabled people tend to face more severe reactions to outbursts.

WHAT CAN YOU DO?

- Make it safe (no consequences) for a disabled person to communicate a limit.

- Recognize that everyone naturally advocates for themselves, because everyone communicates in some way.

- Don’t put limits around ways disabled people can advocate.  Don’t force face-to-face interaction, verbal communication or politeness.

- Trust the disabled person in your life if they indicate that they are encountering ableism.

- Don’t expect a disabled person to navigate ableism alone.

- Use your privilege! (Everyone has some!) Safe and effective advocacy against systems of oppression requires the partnership of nonmarginalized (or more privileged) persons. 

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Let's Talk About Cerebral Palsy and High Pain Tolerance

1,029 words

8 minute read

I'm thirteen years old, when I visit a wave pool for the first time.

"Do you want to get in?"

I do.  I get help in.  My wheelchair remains near the edge of the pool.

The water is shallow.  Around my waist as I sit, perhaps a few inches deep.  I recline on my hands and enjoy the feeling of the water.

I have no context for this experience. I've grown up with plastic kiddie pools.  Water that stays where it's meant to stay.

[Tara, left, and Tonia, right, in a kiddie pool at age 6.]

Then, the waves start.

Rather than the gentle rocking I had anticipated, these are bigger waves.  Waves that can easily upend me if I'm not braced on my arms.  It's how I keep my balance.  The result is, I'm slammed into the cement multiple times at an uncontrolled speed.

It's all I can do to hold on.  To keep my hands in position and not let go.  

I think about chancing it and crawling the few feet to the side, but the bottom of the pool is so hard, and I have no way of knowing when the waves will hit.  I have a system that keeps me alive, right now.  If I try crawling and a wave tips me over, what then?

I want to get out, but I just got help in.  

Better to wait until help is offered again.

I hope someone offers me help out.

Waves are coming every 60 to 90 seconds.  They slam me into the cement over and over again.

I don't cry out.  I don't make any noise at all.

But that's not because it doesn't hurt.  It does.  Badly.

It's because pain is something that garners disgust.  It attracts blame: ("What did you do to yourself?")  And then, it's quickly brushed off and moved past.

I watch everyone else play in the deeper end.

Maybe they'll be done soon...

A little girl come to sit near me.  I'd like to talk to her, but I'm shy, and all my energy is being consumed by making sure these waves don't knock me over.

Waves continue to come.

It hurts to sit, and it hurts more when waves come and slam me.

An hour passes like this.  Maybe more.

Finally, everyone is done, and I get help out.

Relieved, I sit in my wheelchair, but wince and shift my weight forward abruptly at the pain that sitting causes -- even in my chair -- even on its cushion.

Bathing that night in the hotel bathroom is almost unbearable. I fold a washcloth into quarters and place it under me, so I can stand sitting in the tub.

Over the next few days, I look for reasons to stand up and walk around, even though my wheelchair is here to save my stamina.

Once home, I continue my washcloth-quartering in order to be able to tolerate bathing.  I do this for months because the pain is still present.

I accustom myself to it.

I don't know when it stops being unbearable.  Only that it does.

***

It's only as an adult that I've learned what actually happened to me in that wave pool:

I broke my tailbone.

Bruised tailbones heal in four weeks.  I was still tending mine in the fall and winter months after we returned from vacation.  Broken tailbones take two to four months to heal.

This kind of thing is often chalked up to 'high pain tolerance.'

The thing is -- as Tara has said before -- "Pain is not an alarm system for us, but something expected that we must tolerate."

I had been forced to tolerate intolerable pain since I was a five-day-old preemie.  When we are forced to withstand torture when most babies are still safely inside their mothers -- is it any wonder that I didn't say anything about my pain?

Because, of course it hurt.

But did it hurt like the medical trauma of my infancy?  Did it hurt like having 13 surgeries at once as a 10 year old?

No?

Then, I was probably good with just keeping quiet about it.

***

Here's what I need people to understand:

If medical professionals are going to recommend off-the-charts painful medical procedures to babies and children with CP, we are going to have a different relationship with pain.

If therapists encourage our grown-ups to ignore us when we cry and scream through painful range of motion exercises?  We are going to have a different relationship with pain.

We are going to stuff it down.  We're going to dissociate just to get through it.

Because we have no choice.

But that doesn't mean it doesn't hurt.  

It just means, we learned far too early that no one responds to us if we show that it does.

The stuff I have been through?  As a baby and as a child?  It would bring nondisabled people to their knees.

But I need you to realize what would have a nondisabled person screaming and writhing in pain, might only make me shift my weight and look for more opportunities to stand up, as it did when I was thirteen.

***

If you are the grown-up in a the life of a child with CP, I need you to know a few things: 

- Just because a kid with CP can't show their pain the way pain is traditionally shown, that does not mean we are not feeling any.  It doesn't necessarily mean they "got over that Botox really quickly."  Or that they are "resilient" or "tough."  It means they need you to pay attention to what they can show.

- Know that our pain scale is likely calibrated way higher than a nondisabled person's.  That means pain signals will be subtle.  Look for them.  Learn them, and tend to them in the same way you would a nondisabled kid with traditional pain signals.

- Your nonverbal child is still giving you signals.  So make a habit of checking them for injuries or pain.  Know there is always a reason when they cry (and that by crying, they are communicating with you.)

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Ask Disabled People For Consent Before Sharing Your Access / Ableism Rant

668 words

5 minute read

We've all been there.

Somebody was just super ableist, or "nicely" ableist, or somewhere public was not as accessible as it should have been.

What do you do?

What human instinct leads all of us to do, I bet.

You tell your disabled friend, because we're the ones who "get it" the most.

But wait.

Before you video call, or text or rage tweet your disabled friend about how inaccessible an event is, I want to tell you a story.

***

A few months ago, a friend messaged us in exactly this moment.

They were somewhere and the access just wasn't up to par.  When they approached someone in charge about it?  This person was less than understanding.

[Image: Uncarpeted stairs and an unstable railing lead to an entryway littered with shoes and rugs.]

The friend came to Tara and I, and let out all of their feelings at the injustice of what had just happened in a flurry of Facebook messages. Tara and I were startled. To us, the rant came out of nowhere.

This was complicated further because our friend is nondisabled.  And I've since made no secret of the fact that hearing this person so angry about access barriers brought me right back to every moment in my life, when nondisabled family members had gone on similar rants.

One, in particular, was nudged awake.

I was in my twenties and had gone to support my youngest sibling on Track and Field Day.  Another family member (nondisabled) also stayed, and ended up commenting all day long on how inaccessible the outdoors of the elementary school was.

Because it was an outdoor event that lasted several hours, I was faced with various access barriers: grass, dirt, lack of curb cuts.  You name it, it was there.  But I was used to it.  I couldn't (and can't) get mad as a wheelchair user every time I can't get somewhere.  I'll have no energy left if I do.

But the family member with me?  They ranted all day, while pushing me, so their words about the lack of access rained down solely on my head.  For hours.  It didn't matter if I answered back.  My nondisabled family member's anger mattered.  That's what was centered.

By the time we were home, their anger had not blown over.

I tried to reason with them:

"I deal with this every single day.  It's fine.  Don't worry about it."

But their anger still took center stage:

"No!  This is wrong!  I can't believe it's like this!  I'm sending an email!"

***

The thing that gets missed in moments like this is that as the person with access needs?  As the person who has experienced access barriers and ableism my whole life?  I come away from that rant from a friend feeling like I am the problem.  Like it's my fault.

It brings back years of those old feelings.

After all, I was, historically, the reason that my nondisabled family would notice and get mad about access barriers.  

So it can get tricky, especially when you are nondisabled and want to share about how the public was inaccessible to your loved one.  

***

Thankfully, in most of my friendships, we ask for consent before sharing an access or ableism rant (especially the nondisabled friends -- but even the disabled ones!)  We know that by sharing with each other we may be unearthing a lifetime of pain, and we want to be sure that the other person at least gets the opportunity to consent.

The disabled / nondisabled (and neurotypical / neurodivergent) cultural divide is complicated to navigate at best. We have definitely had bumps in the road -- particularly in interabled friendships.

But with awareness and care, these friendships can be kept.

When we mentioned to our friend that we'd appreciate being asked before they shared such a rant again?  We saw this in response:

"So sorry about that.  I will do better next time."

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Cerebral Palsy FAQ

932 words

7 minute read

I'm a part of a couple CP groups and follow several pages by parents about CP, and I tend to see the same questions popping up over and over.

So I thought a post was in order.  An easy, one-stop post that answers these questions once and for all.

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What is Cerebral Palsy?

Cerebral Palsy is brain damage that affects the signals sent to muscles in different parts of our bodies.  (From just one, to all four limbs.)  It impacts our ability to balance, our coordination, our strength and our posture.

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Can Cerebral Palsy be cured?

No.

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[Image: Photo caption reads "Tonia - 11/22/81 - 5 months]

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Help!  My baby with CP is not reaching milestones!  Are they okay???

CP is a developmental disability.  

That means they will be on their own timetable when achieving milestones.  

Some with CP will walk after their second birthday, for example.  Others, like me, may be unable to walk without adaptive equipment.  Still others may not be able to walk at all.

Grasping, rolling over, talking, sitting, standing and potty training all are included in possible areas you might see delays.  

This developmental delay sometimes includes growing (if your baby was a preemie and / or spent a long time in the hospital.)  And even teething.  My sis and I did not start teething until 14 months.  As kids, we lost teeth late.  (I didn't start losing my baby teeth until after my seventh birthday.)

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But my baby's doctor said their CP was mild!  Why aren't they doing X, Y, Z yet?

When you replace "CP" with "brain damage" perhaps it will make more sense when I say that "mild" brain damage is still brain damage.  Your baby still has CP which will still impact them in various ways.

(Also functioning labels stigmatize.  Those with more involved CP are often more isolated and spoken over / spoken for.  And those with less involved CP are often put under pressure to perform closer to a nondisabled standard, which is not always possible.)

***

But should I look into Botox?  Surgery?  Therapy?

If so, you should also look seriously into Medical Trauma and CP.

In my opinion, surgery and Botox should be a last resort.  And therapy should be done with an eye toward what your child wants to learn, and perhaps, pain management.  

Kids with CP deserve childhoods.

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How and when can I tell my child they have CP?

Check out How and When to Talk to Your Kids About Their Disability

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When did you first know you had CP?

I've always known I had CP, but not because of a sit-down conversation anyone had with me.  I listened at doctor's appointments.  I listened as my classmates were told about me and my CP.  And my sister also has CP, so we saw it in each other our whole lives.

But the result of not being told directly and not having CP be an open conversation, I felt a lot of shame around it.  It was never brought up around my house growing up, except in a negative context.

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Why is my kid with CP having accidents even though they are potty-trained?

"Holding it" can be difficult for those of us with CP, because it's hard to isolate just those muscles. 

With CP -- it can often feel like "all or nothing" in terms of muscle-engagement. So your child may "hold it" but then not be able to move, and when they do move? They may not make it to the bathroom in time. 

It also is a common issue, I think, for some of us with CP to not necessarily know exactly when we have to go unless it's super obvious / almost too late. 

That said, be patient. Be understanding. Know your child is not being naughty.  If they are hiding wet clothes or bedding, it is likely out of shame.  

Talk to them calmly.  Apologize if necessary.  "I'm sorry for losing my temper.  I didn't understand, but now I know you're not doing this on purpose.  You can always tell me if you need something washed.  I'll wash it for you and I won't get mad."

And if they need it, look into pads for incontinence -- even if they are not fully incontinent -- this helps to keep things drier.

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How did you deal with the emotional side of things and feeling like a burden?  What did you need from your grown-ups?

As kids, we need to hear that you are happy to help us.

When you say this, make sure your face and voice matches the words you're saying.  If you're gruff or impatient, or snap at us.  We get an inconsistent message and may still come away from a situation feeling as though we did something wrong.

So, make sure your kid sees your love for them.  Talk about a family member or friend they love to help.  And then tell them, "It's like that.  That's how I feel about you.  I always want you with us."

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I really want my kids to have friends.  My kid's school has offered to assign them a friend.  Isn't this a good thing?

Check out: The Danger of Forced Friendships Between Disabled Kids and Nondisabled Peers

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Are there any books out there that won't make my kid feel like they are the worst for having CP or being disabled?

All About CP and Me

We Belong

Mia Lee is Wheeling Through Middle School

The Chance to Fly

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