Why We Don’t Look at Ableism as the Sickness?

Let me make my case....

This is a… Part Four!

And the last part of this week long ramble.

Or week long… trail ride?

(That’s an inside joke we have now, you and me)

Anyways, okay. I have SO many pieces of writing saved up to make up for lost time and I’m so thankful for your support and time!

Here is a super long piece just for you as thanks!

See you soon?

I have been living undercover.

… No one directly knows about my health at my day job right now, and I just finished a glorious weekend retreat with my family where only a couple close humans knew about it.

And let me explain why I’m even explaining this.

I don’t mind talking about my spine, to be honest, because that’s … not that exciting? It’s whatever?

If I say “oh I have some back problems”, no one even remotely will call to mind how many spine surgeries I’ve really had and how degenerative the whole hell hole has been. But in terms of all the missing organs and robot parts and ICUs and stem cell transplants and secret sufferings beyond:

I have truly loved being a human body, lately, whose body no one gives a sh*t about.

And THAT is called privilege (many peers can’t “conceal” what hurts and harms them) and that is also called: Complicated.

Because… Why do I feel this way?

Why do I happily hide certain things, but then write about them with absolutely zero filter here- Where any one could read it?

For me: putting pain into tight little cardboard squares inside my mind makes it feel survivable, somehow. As if, by separating when it’s okay to show or share something to “on paper” or “in person” makes it any less involved to think anyone even gives a sh*t to begin with.

I used to be someone who would annoy anyone I was “dating” because I’d show up at a party or event, and disappear into the crowd making new buddies with strangers.

I didn’t know that things like “arm candy” or even “NOT happily third wheeling with friends” wasn’t necessarily an aim.

I had to learn to not be blatantly rude to my (now) love- who’s an introvert - by not abandoning him completely… because I truly thought the point of socializing as socializing as a human-bean, not just as a couple.

I didn’t even know that that is a cultural expectation that isn’t placed on all women in all cultures.

I’m not an extrovert all the time… I just thought the goal of new environments was meeting new people, not just showing that you’re attached to the ones you already live with.

Point? I didn’t need to wait for someone to carry my bag before my spine got this bad.

I moved my girls and I into our first independent little apartment, and painted a wall “Frida Kahlo freedom red”, and kept us safe all on my damn own. [In a physical sense.]

It’s not that we shouldn’t accept help, or that I didn’t survive life most of the time with a village… but that I didn’t know what most humans will never experience until they’re in elder years:

The world dehumanizes and degrades us [in America] if we need help.

I’ve learned to feel guilty for not being anything BUT a perfect mother… by only one standard of what that means. And when I look at so many Mommas in America today? Posting our personal personification of Perfect™️ on our perpetually patrolling feeds, I know a deep and dark truth that many of us possibly feel down deep, if we allow ourselves to truly sit with:

We are lonely.

We WANT a village.

We WANT a community, something to believe in, belonging.

We NEED the red tent in an emotional and spiritual sense.

We make parents (no gender specification needed) feel expendable and inferior, but then my question is:

What are [majority culture] teaching our children about love right now?

Are we saying it’s a burden to sacrifice for others and not be selfish?

Are we saying that boundaries matter more than balancing healthy limits with that indescribable feeling we instinctively and intrinsically experience when we help someone else?

Why do we all know that feeling if we aren’t meant to feel it?

Why do so many majority cultures say that being insular means strength, and being isolated means weak… When the question is=

“How many of us want our children to grow up alone?”

Or… “Would you rather they feel connection, love, sacrifice, remorse, acceptance, charity?”

Recently, I’ve had to ask myself my own question that’s even harder to admit:

“Will I ever be autonomous ever again?”

And in response, I feel an emotion that can’t fully be named whilst realizing how hard it can be to have an adventure that would have felt like cake to The Old Me… and now: I am not that person any more.

So… am I now less worthy of being a person?

AM I a person?

In the moment, I vacillated between the guilt-riddled culture we often press upon young women growing up, and what I actually believe to be true from seeing the love and light of Deaf or immigrant families in action.

My daughter is a CODA, for example, and has grown up knowing that responsibility, respect and capability is something we can place upon children.

But I have a running ticker tape of Ableism running through my mind at all times too, from viewing myself through the eyes of those who’ve said hateful things many a time. And even tried to use the trope of “you’re a bad mother if you’re a sick mother” to harm the very foundation of our family (successfully)… even when it just isn’t true.

Any one who has said that and believes that IS sick… but can’t see that either.

Do I regret writing about the inner workings of the labyrinthic psychology of someone who is in pain so openly here, online?

And so often over the very many years?

Sometimes, yes.

Because those who read only into what they read online shows so readily in what they later say or believe.

Those who are accidentally ableist treat anyone who “gets the job done but does it differently” differently than they do others in the same job. And it shows.

And I don’t understand why we don’t look at ableism as the sickness (it is your perspective, empathy, compassion that needs medicine) and not the sick person themselves?

Not all pain can be treated, this I know. But I DO believe that all sociological misinformation and conditioning CAN be helped, no matter what the age or background… If the person is just willing to try.

We shouldn’t give up on sick people and we shouldn’t give up on ableist people, but it shouldn’t only be on the backs of those who are sick to help the problem.

We need help.

We are all just souls trapped in bodies. It’s really that simple. So no matter the ‘ism (racism, sexism, ageism, ableism):

We all need to teach as many as we can that being different doesn’t make someone worse.

But you seeing us that way does.

Thank you for this week together, Word Nerd friends!

I’m so grateful for you.

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