Monday, November 11, 2019

Recognizing Subtle Ableism

This was originally written as a guest post for the now-deleted blog "The Disabled Muslim" in April of 2018

Ableism (discrimination against the disabled) is everywhere.  Most nondisabled people recognize that it’s ableist to overtly mock a person’s disability-related symptoms, to park in an accessible space or use an accessible stall if one is not needed, or to bar a disabled person from consideration for a job or entry to a building due to their disability.  But ableism can present in subtler ways.

If you’re out running errands, and you see a visibly disabled person, pay attention to how people around them are treating them.  Chances are, you may any of the following 6 sneaky ways ableism can masquerade as other, less damaging things.  Rest assured, though, ableism is ableism, and it is always damaging.

Pity / Burden:  

It’s human nature to react with sadness and sympathy over the sudden injury of a friend or loved one.  In this context, sadness and sympathy is expected - even appropriate.  It’s discouraging, painful, perhaps even traumatizing to lose abilities you once possessed, even for a short time.  It can be daunting to have to ask for help if you’re not used to it.  To have to rely on others for things you are used to doing for yourself.

But the reason many feel like they become burdens when they become injured, or suddenly disabled has a great deal to do with how we, as a society, treat disabled people.

If you listen carefully around any disabled person (child or adult), or any parent with a disabled person, chances are good you may overhear an exchange such as this:

Stranger:  Oh my God, what happened to your leg????
Disabled Person:  Nothing.  This is just how I walk.

Or this:

Stranger:  What’s she got?
Parent of a Disabled Child:  Down Syndrome.
Stranger:  Oh, I’m so sorry…

The important thing to remember is this:  growing up with a disability feels the same to those of us born disabled as it does for you to grow up without one.  It feels normal.  There is no need to pity us.  No need to think of us as burdens on our families.

If you feel bad about access barriers and discrimination we face, come alongside us and help us fight that.

Inspiration:

I bet you’ve seen the news stories.  The latest I can recall is about a kindergarten aged child who shocked his parents by learning and reciting the Pledge of Allegiance with his classmates.  The child was largely nonverbal.

Now, is this an accomplishment?  Absolutely.  Those are complicated words, requiring a lot of work to memorize and articulate.  But this child’s accomplishment is a personal one.  One to share with his parents.  People who love him.

It crosses the line when the child is objectified for a fluff piece read largely by a nondisabled audience.  An audience who will likely feel that kids like this boy are a burden.  That his disability makes him an object of pity.  Nondisabled readers consume this media to feel good.  But it is at the expense of disabled people’s personhood.

[Me, on the beach with my crutches in Mexico, 2007.  Not in any way accessible.  But I promised my little brother I'd touch the ocean before we left.  Doesn't make me an inspiration, just a keeper of my word.]

I was once walking outside of my residence with my crutches.  The caretaker in the building was sitting outside visiting with someone.  She stopped what she was doing and said:  “Are you taking your daily walk?  To inspire me?”

At the time, I could not think of a way to respond.  So, I didn’t.  But now, words are there:  No, I wasn’t out walking for her.  I was walking for me.

We do not exist to reassure the nondisabled population: “It could be worse.  You could be me.”  (Seriously.  Would you like it if someone thought this about you every time you walked past them?  Would you like it if they were bold enough to tell you to your face?  I bet not.  I bet it would make you feel pretty terrible.)

We are living our own lives.  Just as you are.  Let us inspire you for the same reasons your nondisabled cohorts inspire you: because we accomplished a personal goal after a lot of hard work, because we earned something.  Not because we’ve gotten out of bed.  If you personally know someone for whom it is an accomplishment to get out of bed, then by all means, encourage them in that.  But don’t assume that the disabled stranger or acquaintance you know is an inspiration just because you assume their life is difficult.

Remember: our life is normal.

Lack of Wheelchair (or Other Mobility Device) Etiquette:

This one is a bit of a mouthful, but let me see if I can streamline it:

Disabled people such as myself who depend on mobility devices to get around view our adaptive equipment as extensions of ourselves.  Our wheelchairs function as our legs.  Our crutches, or walker make it possible for us to ambulate.

So, just as it would be rude to talk about how unwieldy and inconvenient a person is when getting into your vehicle, it is equally as rude to comment in such a way about a disabled person’s mobility device.  I have heard these remarks countless times throughout my life.  Each time, instead of hearing, “This chair is too heavy,” I heard:

“Tonia should not have come along.”

“This trip would be better, easier, and more fun without her.”

“She is a burden.”

Because my wheelchair enabled me to go places with my family.  To keep up with them.  By remarking disparagingly about it, my family was unintentionally sending me a message that I was too much to deal with, and should have stayed at home.

Similarly, just as it would feel unaccountably invasive and dehumanizing to have a stranger lean on you, or hang their jacket from your body as though you were a coat rack, it’s equally off-putting to have a stranger or distant acquaintance hang their clothing from - or brace themselves on - my wheelchair.  Because it functions as a part of my body, these strangers are essentially all touching me without consent.

This also applies to well-meaning strangers or acquaintances who may think I am struggling and set out to push my wheelchair without asking me first.  It would be in no way okay to pick up a stranger or acquaintance bodily and physically move them where you think they ought to go.  If you would not do it to a fellow nondisabled person, don’t do it to us.

If you think we might need a hand, or a push, ask us.  We’ll tell you whether we do or not.  If the answer is no, respect that.  We have the right to refuse help just as you do.

I Don’t See You As Disabled:

So, I can’t lie.  Growing up, and steeped in internalized ableism, I used to see this as just about the highest form of flattery anyone could give me.  Because I saw disabled people as inferior myself, I did not want to be seen as one.  In fact, because we don’t move through the world in front of a mirror, I identified as nondisabled, all through growing up.  But a kind of...subpar nondisabled.

Being told back then that someone didn’t see me as disabled made me feel that all my work trying to be “just like everyone else” was paying off.  But as an adult, who has worked (and is still working) to confront the loads of internalized ableism I have within me, I have changed how I view this well-meaning statement.

These words are often meant as a compliment.  But let me see if I can point out why it doesn’t feel like one.

Men, if a woman approached you, and said, in a well-meaning, reassuring voice that she “doesn’t see you as a man,” that wouldn’t feel affirming, would it?  Assuming you identify as a man, you’d probably be pretty insulted.

Women, if a man approached you, and said, in that same voice that he “doesn’t even see you as a woman,” like it was supposed to be a good thing…  Would it feel good?  Again, if you identify as a woman, you’d probably resent this man.

Understand, it feels the same when nondisabled people tell us that they don’t see us as disabled.  (Or tell us we are “too pretty to be in a wheelchair.”)  We are disabled.  We are pretty.  We are in a wheelchair.  These are all truths about us.  Aspects of who we are as a person.

If you find yourself trying to reassure a disabled person in this way, remember that the only words we are hearing are:  I don’t see you.

Overcoming Disability:

“She didn’t let her disability stop her!”  

You’ve probably seen this one in the inspirational news stories about disabled people.  It’s nonsense.

It’s nonsense because competing in softball when you don’t have legs or gymnastics when you have a prosthesis or Down Syndrome does not mean a person has overcome their disabilities.  They still have them.

They have overcome ableist society whose closed beliefs and refusal to adapt have often kept people with disabilities from participating in activities we should get to participate in.

This is also problematic because it stems from disabilities being seen as burdens, and/or reasons to pity someone.  And it puts enormous weight on disabled people to fight an intrinsic part of ourselves.  To fight a losing battle to make our disability a nonissue.  To make it as small as possible, for the comfort of nondisabled people around us.

Nondisabled Know Better:

Have you ever heard a waiter ask customers at a table what they’ll have?  Pretty common, right?  What about if that party has a person with a disability in it?  Have you ever heard the server skip the disabled person and ask the next one, “What will she have?”

I know it happens, because I have been that skipped person.  The assumption made here is that the nondisabled people know better than the disabled people what is good for them.

It happens all the time.

A disabled person says: This is an issue for me.  I cannot access this thing.

A nondisabled person responds: No, it’s not.  It’s fine.  You’re just not trying hard enough.  (Because Nondisabled Know Better often coexists with Overcoming Disability.)

It happens when a disabled person makes a decision regarding their health that is countered by a nondisabled voice.  (Maybe the doctor we are there to see.)  Or perhaps, it’s a bit of unsolicited advice from a friend or family member, suggesting a painful medical procedure or surgery and disregarding our discomfort.  We are constantly struggling for autonomy over our bodies.

This is an issue because it dismisses disabled people’s actual lived experience.  Our own words often do not hold weight in society - often, until a nondisabled person echoes them.

So while you cannot single-handedly deconstruct countless years of ableism as a nondisabled person, you can back us up.  Don’t speak over us, but if you hear us saying that something is a problem for us, join us.  Encourage other nondisabled people to hear us out.  Ask us if we have an idea of what might help.

Remember that the best way to be an ally to a person in a marginalized group is to listen.  Learn.

Be on the lookout for the subtler ways ableism can masquerade.

Thursday, October 24, 2019

Review: Raising Dion and Disability Representation (Season 1) ***Contains Spoilers***

Okay, wow.  I've just finished watching Netflix's Raising Dion...and I'm not over it.


In part, because of the character of Esperanza (played by actually disabled actress, Sammi Haney.)  She was memorable from the beginning, critiquing Dion's lair for not being accessible.

When Dion threw out pillows to make room for her, Esperanza goes inside, and reassures him:  "Now you won't get sued by the city!"

Esperanza's not a wholly angelic character.  She's a bit clingy.  She "makes it weird" with Dion a lot, and she takes on other people's workload.  She's also intuitive, smart (but not in a "in spite of her disability" way) and not afraid to go the extra mile to help her friends.

My favorite episode was 1x08.  Dion (who's jealous of Esperanza's budding friendship with classmate, Jonathan) and sets out trying to impress her by levitating her out of her wheelchair with his powers.  He says, "You'll like it!"

Esperanza doesn't like it.  She insists Dion put her down.  She asks him angrily, "Why did you do that?!"

He says, "I thought you'd like it!  I was trying to make you--"

She interjects, "Walk?"

It's clear that is what Dion means.

Esperanza asks him firmly to open the door.  Then, says, "Thank you," not looking at him.  She doesn't talk to him for a few days.

Meanwhile, Dion realizes that Esperanza has never expressed a desire to be out of her chair.  That he crossed Esperanza's boundaries.  He gets back to school inside in time for the science fair.

Dion apologizes to Esperanza, "I'm sorry for trying to fix you when you're not broken," he says sincerely.  Esperanza gives him a hug.

This type of representation is still rare.  And I loved typical "disability existing to be cured" trope was addressed as something harmful immediately.  We, the audience saw right away that Esperanza was distressed by what Dion did, lifting her out of her wheelchair without her consent.

It's beyond important to see representation like this.  And to see Esperanza as a part of things, playing an important role in the story.  Bringing Dion's inhaler to him, in one memorable scene.  Turning off her tablet before Jonathan could record Dion when he was hospitalized and delirious in another.  And helping Dion and his mom in the final episode, advising Dion's mom that she knows what it looks like when somebody doesn't see you.

This turns out to be pivotal insight.  Esperanza's not just a prop, she's an integral character in the show.

So looking forward to season 2.

(This review was Esperanza-heavy for obvious reasons but I LOVED the rest of the cast, too!  Dion and Nicole's relationship was the best.  Pat was super layered and complex, too.)

Definitely tune in to check out this show.

(TW: Strobing effects might impact photosensitive viewers.)

Sunday, October 20, 2019

Review: The Pretty One by Keah Brown


After months of waiting with anticipation, I finally had the pleasure of reading Keah Brown's book debut: The Pretty One: On Life, Pop Culture, Disability and Other Reasons to Fall in Love With Me.  While not all the essays resonated with me, I'm going to focus on the ones that did.  The ones that made me go: "People need to read this right dang now!"

LOVE YOU, MEAN IT: As a twin myself, it's a rare day when I get to read about the uniqueness that is the twin relationship.  While my relationship with Tara is very different than Keah's with Leah, I found myself feeling so much fondness reading this essay.  Keah's connection to Mary-Kate and Ashley mirrored our own and when Tia and Tamera Mowry appeared in Sister, Sister, we watched every week, thrilled to see another set of twins, even closer to our own age - and who both got to appear on screen at one time!

IS THIS THING ON?: This essay might be my favorite in the entire book.  Keah pulls no punches in discussing her identity as a Black disabled woman.  She discusses disability history and problematic euphemisms around disability. This is the essay, more than any other, that made me feel like things are changing in the publishing world.  Though I've seen a lot of these sentiments articulated online, I've not yet seen them published a book like this.  Read this dang essay.  (Better, read the whole dang book.)

YOU CAN'T CURE ME, I PROMISE IT'S FINE: I related painfully well to Keah's essay on church and its teachings on disability.  On just how harmful they can be to people with disabilities just trying to grow their faith and relationship with God.

FREEDOM OF A PONYTAIL: This was the only essay in Keah's book that I'd read previously, and I loved it just as much as I did the first time I read it.  Because in many ways, it mirrored my own struggle in my mid-twenties, trying to figure out how to put my own hair in a ponytail and having nowhere to look for guidance.  (My younger cousin finally taught me by sitting on my lap and reaching behind my head to put a ponytail in my hair, and letting me hand-over-hand it with him.)

And finally, this excerpt of CRY, BABY, CRY blew my mind:  "My family understood that three surgeries at once was a lot for a young girl, or anyone, to take on." (The Pretty One, pg 188)

Reading that passage made me think seriously about my own history with surgeries, the issue of consent and the vital part family support plays.  While my experience does not mirror Keah's own, it's a mark of good writing when a piece can make you realize something for the first time, or completely reframe something from your own past.

I love that this was the very first book I've ever read by someone like me.

I hope to read so much more by Keah Brown.

Tuesday, October 8, 2019

Christopher Diaz Survives on This Week's Episode of 9-1-1


Season 3, Episode 3 "The Searchers" aired on October 7th and opened with firefighter, Evan Buckley, searching for Christopher, who had previously fallen off of a firetruck that shifted during a tsunami.

Buck spends the entire episode searching for Christopher.  Sometimes it's promising (some survivors swear they saw him on the way to The Cupcakery where there was water being distributed) and sometimes it was utterly heartbreaking, as when Buck was urged to check the morgue tent, to see if Christopher is among those who didn't survive.

By the end of the episode, Buck has lost all hope and must confess to Christopher's dad, Eddie, that he lost Christopher.  But simultaneously, a woman (who we've seen moving with a group of survivors throughout the episode) arrives with a child wrapped a blanket.

It's Christopher!

Eddie approaches, and the woman immediately asks, "Are you Buck?"

Eddie assures her, "I'm his dad!"

She responds, "He's looking for Buck!"

I loved a couple of things about this:

First, that it's shown that Buck is not the only adult who is shown to be concerned and actively caring for Christopher.  This woman had Christopher with her for hours, making sure he was warm and not left behind.  (Again, showing the audience that his life has value.)

And second?  That she asked questions when Eddie approached Christopher.  She didn't just hand him off.  She also made it clear who Christopher's looking for - advocating for him - and making sure of his safety before she leaves him.

To finish, we see Eddie dropping Christopher off at Buck's house again.  Buck is startled, feeling responsible for losing Christopher and feeling guilty.  Eddie says, "The way he sees it, you saved him.  Now it's his turn to save you."  (Tara pointed out that in the previous episode, Christopher and Buck had spoken about how they helped each other survive while on the firetruck together.  So, it's possible that Christopher and Eddie had a subsequent conversation about this and Eddie's relaying the information.

Eddie tells Buck that he's happy to have Buck watch Christopher.  He lists all of the things he's packed for Christopher to do: (coloring books, Legos and two snacks), he leaves money for pizza.  He mentions that Christopher is easy to watch because he "isn't very fast" (ha!)  And that he "doesn't make anything that looks like anything" with the Legos, "he just likes sticking things together."

All of this seems to be said in an effort to reassure Buck that he can take care of Christopher.  Eddie does not blame him.  In fact, he makes it clear that he has let Christopher down multiple times.  "But it's up to me," he says, "to never stop trying."

First and foremost, I'm thrilled that Christopher survived, obviously.  I still really love the storyline.  And there was even a poignant line by Maddie (Buck's sister, a 911 dispatcher) where she talks about the loss of "all the people who couldn't swim."

I couldn't help but think of Christopher in that moment.  But I'm so glad that instead of using his character as a part of a super tragic storyline, 9-1-1 is breaking new ground, making it clear that disabled lives have value and we need to be considered and supported, and rescued in emergency situations.

Thursday, October 3, 2019

What's Remarkable About Christopher Diaz's Storyline on 9-1-1

I've been a fan of 9-1-1 since season 1 featured Alice Kina Diehl (as emergency dispatcher, Stephanie Gaskins).  Season 2 saw the addition of Gavin McHugh as Christopher Diaz (firefighter Eddie Diaz's 8-year-old son).  What makes these casting choices notable?  Both actors have CP.  It's been amazing to watch Gavin on screen every week - to see someone with my CP has been so validating.

Episode 3x01, "Kids Today", (which premiered on September 23) ended with a tsunami imminent and Christopher visiting the pier with firefighter Evan Buckley.  We see Buck toss Christopher over his shoulder, and book it as fast as he can off the pier.

3x02, "Sink or Swim," (which aired on September 30), begins like this:


What's remarkable about this?

Well, a lot.

NORMALIZATION OF HELPING DISABLED PEOPLE IN EMERGENCIES:
Disabled life does have value, even if we cannot contribute to society in traditional ways.  That's shown here, in Christopher's fight to stay alive, Buck lifting him to safety on top of a firetruck.  It might seem like, "Of course, Buck would help Christopher!" But a portrayal like this is the exception, not the rule.

The truth is, disabled people are often not considered in emergencies.  We are left behind, and even reprimanded for trying to save ourselves.  There's often no protocol for disabled children in lockdowns or fire drills.  Disabled adults are left behind in natural disasters and states of emergency. 

9-1-1 choosing to portray Christopher not as an afterthought or a burden is significant in the lives of people with disabilities because seeing media depictions in popular culture is often what begins the shift in conversation and culture.

'HE MUST BE PROTECTED AT ALL COSTS':
That shift is already evident on social media. 

Last night, when I braced myself and checked Twitter for fans' reactions to the episode, I was nervous.  Because even as recently as two years ago, portrayal of disabled characters was frighteningly ableist.  When this happens, the public reacts accordingly.  (If they see a disabled person portrayed as a burden, for example, the public is not going to value that character.)  Needless to say, I was so pleasantly surprised to see the public's response this time around.

You can glimpse the same goodness that I did in this article:  9-1-1 Fans Rally Around Christopher After Dramatic Tsunami Cliffhanger: 'He Must Be Protected At All Costs!' So often, in media, like the popular book Me Before You we see the trope that disabled people are better off dead than disabled.  It is beyond refreshing to see fans rooting for Christopher's survival and angry about his being unprotected.

KIDS WITH CP AND NEAR-DROWNINGS:
Finally, this episode raises important awareness about kids with CP and near-drownings.

I nearly drowned at 13 years old on a family vacation.  The innertube I was in was ripped away from me by a wave.  I sat in the hip-deep water, the surface just above my head.  I couldn't stand up without my crutches and I didn't have them with me.  My twin sister (who also has CP) is the person I credit for saving my life.  She was able to get me to the surface a few times to breathe, in time for someone else to notice and come and help me walk to shore.

This hasn't happened just to me.  This has happened to other people with CP during childhood as well.  And as difficult as it was for me to watch this episode, I was glad to see all these things represented because it really drives home the point: whether a kid with CP is 8 years old like Christopher, or 13 like I was?  If that kid cannot swim, they need a life jacket on at all times near water.  And in an emergency situation, like in the episode, we need an adult who can swim and support us.

Representation like this matters because it draws attention to real life issues that often are just not spoken about.  They're swept under the metaphorical rug, and then they keep happening.  Disabled people keep not being thought of in emergencies.  We keep being looked upon like we are burdens.  We keep nearly-drowning.

My hope is that this episode can maybe help these things happen less often.

WHAT HAPPENS NEXT?
At the end of 3x02, we see that Christopher has fallen off the firetruck into the water again.  Buck can't find him.  But if I had any doubt about Christopher's survival, you can bet I would not be posting this blog.

We have a long way to go.  The face of disability in the media is still overwhelmingly white and male.  90-some percent of disabled characters are traditionally played by nondisabled actors.

But this is definitely movement in the right direction.

Sunday, September 15, 2019

What Makes Having a Baby With CP 'Unthinkable'?

I've been staring at this empty page for a long time now.  Because I have no idea how to start - what to say - how to say anything that hasn't already been said on this blog.  How do I speak when I feel like I have to speak, but there might be nothing left to say on a topic?

Well, I do it by doing it...because even if I've written about parent grief before, it is still a thing.  In an article I won't link (because why) a mom with a book coming out had an excerpt of it published.  I've searched the book on a couple of platforms, and I'm willing to reserve judgment because it does seem possible that as a whole, it might be beneficial for nondisabled parents just entering parenthood of a disabled child.  I will say - this article didn't do the author any favors.

'UNTHINKABLE':
This author's child was diagnosed with CP.  The same as my sis and I were decades ago, around 18 months old.  But this mom calls a diagnosis of CP "unthinkable".  Why?  Why is it unthinkable to have a child with CP?  We have always been here:


We have always been here.  But we are not seen.  We're not raised in institutions anymore, but in homes where we are pressed to be as "normal" as possible.  Posed with our legs in positions unnatural for those of us with CP.  Those of us who can pass use all our energy all the time to do so.  And those of us who cannot...well...  We try...and try...and try...to be good little nondisabled kids, even though we can't.  And regardless of if we are the child who can pass or the one who cannot, we can feel family members' unresolved grief.

'A DISASTER THAT WOULD DESTROY THE REST OF OUR LIVES':
All I know about my sister's and my diagnosis is this quote, from a relative:

From what I recall, it was rather open ended.  They really didn’t know what to expect.  I don’t remember that there was anything said – here’s what to expect.  What I seem to remember is that it would be unknown until you got older what your prognosis would be.  You were really the first generation of survivors at that stage of prematurity." [My sister and I were born at around 31 weeks gestation in June of 1981 at 2 pounds 4 ounces and 2 pounds 8 ounces.  Previously, no babies as small as we were had ever survived at the hospital where we were.  We were the first they were able to save.]  "Therefore there was not a lot of data to draw on.  Plus, CP being brain damage due to the lack of oxygen, what are and how much damage was unknown.  There was no way to know, so really hard to hand out here’s what to expect.  To be honest, your health issues were the big concern.  Not getting sick and staying out of the hospital.

The thing is, whether a relative remembers everything, or whether they've blocked it out, we can tell.  We internalize how you feel about us.  If you feel that having a disabled baby (or babies) will destroy your life, we take that personally.  It takes a while for children to grasp subtleties and, more than that, our diagnoses of lifelong disability are an inextricable part of us.  Something that defines and shapes who we are.

If our family members (who are supposed to love and protect us) feel that CP (or another diagnosis) has destroyed their lives - we feel like we have destroyed your lives.  Because, if you take CP away?  I guarantee you, you'd have a different kid altogether.

'WHAT I FELT ENTITLED TO':
This is a really important distinction.  Because, when nondisabled parents talk about grieving a disabled child's diagnosis, they are often grieving the loss of this.  To put it more gently, it's grieving expectations.

But children (yes, even those of us with disabilities) are our own people.  We have the right to our own dreams and goals and to determine what we want those to be.  We aren't property you deserve to be given, disability-free, because of reasons.  We are human beings.  And we can't help the circumstances of our birth.  We're here.

We deserve to feel loved.  And that is a really hard thing to feel when our family members are feeling sad they didn't get the 'everything looks normal here baby'.  (No, love is not implied.  Love is action.  Love is your face lighting up.  Love is unconditional positive regard.  Love is seeing your disabled baby as unique because they are!)  No, they won't experience the world like you.  Yes, some things will be harder.  But they probably won't be the things you think...

MILESTONES / 'INCHSTONES':
No need for cutesy euphemisms.  Our milestones are just as valid as nondisabled kids'!  We reach them in our own time.  My sister took her first steps months after our second birthday.  I didn't walk until I was four years old (with adaptive equipment - I've never been able to walk without.)  Guess what?  It's still a milestone.  A year or so later, when I took my first steps with crutches?  My grandparents documented that.  Just like my sis's smile is captured in pictures as she took her first steps.

And I know there's a lot of focus on walking and other physical and developmental milestones.  But there are ways to cope.  Like, LAUGHING AT THE “NEVERS” (OR THAT TIME I DEFACED MY SON’S DEVELOPMENTAL QUESTIONNAIRE) and / or making a video like Simeon's First Wheels, celebrating your disabled kid's own milestones.

'IF WE DIDN'T HAVE A CHILD WITH A DISABILITY...HOW MUCH BREEZIER WOULD LIFE HAVE BEEN?'
We feel this, too.  I know I said it before, but when you haven't dealt with your unresolved / uninformed feelings around disability we feel this!  And we internalize it.

Anytime, we went out as a family and something happened?  Someone made a comment about where we were parked, or why I was in a chair, or even letting me know that I had "more of a right than anyone else" to be someplace?  I automatically took that in, and thought this exact thing:

"I shouldn't be here.  I shouldn't be with my family right now.  If I weren't here, this wouldn't be happening and they could just have a nice, normal time."

You don't have to say it out loud - that you prefer your nondisabled child - we know.

You can tell yourself, "It's just a thought," and that "Everyone compares," or "thinks of how life could be different," and that is the truth...but it's also dismissive of the harm it does to disabled children who grow up in these households where we know we are not the child that was wanted or even dreamed of...because we are merely tolerated....sometimes not even that.

Tolerance isn't the same thing as love.  It just isn't.

'BROKEN CHILD SYNDROME':
Most of the people with disabilities I talk to share about having the very real consequences of this mentality forced upon us.  Put through surgeries and other medical interventions, because people in our lives can only see what's 'wrong'.

But we are not the broken ones, friends.

The best thing I've been told by a nondisabled parent about grief is:   "Can we talk about this more? I want to understand your perspective..." and "I'm trying to understand, please be patient with me."

Nondisabled parents, please keep trying to understand.  Because your child with CP is going to grow up.  That child might Google themselves someday and see the proof that maybe they always felt inside - that they were nobody's first choice.

But I hope, what they find instead is, something like this: 

"I had wrongfully received her as a broken baby because of my negative disability attitudes, only to quickly recognize that I was the broken one. " - Ellen Stumbo

Monday, September 9, 2019

So, I have trauma...

Yes, me.

Surprised?

Yeah, I'm not either.

Considering the life I've had, it's amazing I'm here at all.  It's amazing all I have is trauma (and let's be honest, I probably don't just have trauma...)

(NOTE: I'm not looking for direction, suggestion, or commentary here.  This is me practicing positive coping.  Kindly stay out of my comments with what I "should" do, medically or otherwise.)

But listen, because I'm about to blow your mind with something (maybe mine, too.)  I don't want to be one of those infinitely positive people at the exclusion of everything else - and the detriment of myself and my mental wellness.  The thing is...I don't think it's wrong to try to find those glimmers of joy that exist while in the midst of the crapfest that is the fall/winter months and my trauma.

[Image is: Reddish orange fall leaves in sunlight, with frost on them.]


First on the list?

1.  Brainstorming at 7:30 AM with Tara.  Coming up with characters out of the blue and giving them the same name without checking with each other first.  (How's that for twinbraining?) 

2.  The imminent arrival of a new candle (Perseverance!)  I mean, we can't have enough delicious-smelling candles.

3. Also the ability to just tell someone: "Hey.  My whatever-month trauma got nudged."  And for them to get it.  And, yeah, it still sucks.  But it sucks a little less being able to talk about it.

(I'm pretty sure I had more than 3 things on this list.  Come on, brain.  We've got this...)

4.  Taking time once a week to talk to the inner-children.  Today, I told them, I know we're sad.  But it is going to be okay.  Because it is.  Life can't suck all the time.  It's not possible.

So, if any of you are where I am today - and you can't find your own glimmer of joy - here's one:

You're not alone.

We've got this.