On Being Disabled: [and maybe an illusionist?]

I have referenced that the name of this blog (Jen Schwartz: Actual Person) came from a session with my writing group, after I shared a recent experience in the Nova Scotia Health system. This is a version of that piece of writing.

This post is intended to be yet another glimpse into the realities of being a person with a disability, in a world that often sees our ways of existing as being somewhat miraculous or applause-worthy.

Note: I do understand that often, folks are well-intentioned. I believe that's the case here as well, so this is not meant to be a direct callout to an otherwise lovely healthcare professional. But, education, awareness, (and maybe some sensitivity training) could have also gone a long way here.

~

It’s a world of both/and.

It’s easy sometimes to begrudge being born disabled.

It’s easy sometimes to tell people not to pity me, because it’s all I’ve ever known.

But some nights, *I* pity me.

Lately I’ve been really aware of my body.

I've hit a point in life at almost forty, that when mysterious aches and pains crop up, I now have a laundry list of things that could be the culprit:

Is this weather-based? Am I experiencing Peri/menopause? Is it my cycle? Hormonal changes? Overexertion? Underexertion? Post-treatment pain? Or is it just because I'm a person with Cerebral Palsy?

Fun fact: It could also be a cross section of any, all, or none of those - add my anxiety into the cauldron, and I also often wonder if it could be something more serious that will get overlooked by myself and or/by professionals, being categorized under one (or all) of the above.

In case you're wondering - this is maddening.

It's one of the reasons that having a disability or chronic-anything can be a full time job for folks. Appointments, research, self-advocacy, scheduling care support, specialists, staying on top of medical equipment and medications, not to mention all of the "regular" stuff (you know, like having a job, some dreams—or a social life?!?!) it never ends.

So, as you can imagine, I've been dealing with some big feelings about all of this.

I've been rattled that I didn't appreciate my body at 20 years old that was active and could go running around Saint Mary's University campus (relatively speaking) all day and then go out to Open Mic the same night, without needing to shift positions, lay down, take a nap, or see a medical professional in between. (Yeah, I know, there's some stuff to unpack here. Don't worry. My therapist is on it.)

I’ve been pissed about the fact that when people say how cool it is that I’m a twin, they paddle it back when I tell them that my sister is full-care, and nonverbal. Like somehow it’s less special because we can’t get into some Parent Trap shit. I'll have you know, my sister has the most hilarious twisted sense of humour, and could out-process any of you when it comes to a good sarcastic quip, thank you very much.

I’m angry. Like, red hot rage angry - about the fact that nobody bothered to tell me what to expect when I hit my thirties. That somehow no doctors seem to know, or care, what an experience of being a disabled adult is - because you’re only valuable to the health system, if you’re inspirational, or have some kind of grant attached.

-

I went to the emergency room for nerve testing a couple of months ago. 

The kind where they literally take a medically approved cattle prod and zap you to see if your brain and your body can respond in kind. At least, that’s the best of my knowledge.

I’m anxious as fuck.

I ask the tech how long the tests would last. 

“I don’t know”, she sighs. “It’s really different for each person”. 

More anxious. I have to book a fucking taxi you know. And it’s harder for me than most, so, could you just….I interrupt my own thoughts, to ask a different question.

“Will this hurt?”

I’m transported back to my seven year old self, waking up in the post-op section of the hospital. I’m sore, and I want my mom. My dad got me a stupid Lion King helium balloon that said “Hakuna Matata - NO WORRIES!” fat chance. I told him I wanted Minnie Mouse, because she’s cheerful. “But this is more grown up, " he told me.

Now I’m 38 - and I want my fucking mom again.

Cut back to this woman in the testing room, who clearly didn’t want to talk to me.

“Well I mean, some people don’t mind it, some people go screaming outta here. It all just depends, but you’re young. So you should be fine.”

You’re young.

The tone of her voice told me that she didn’t  think I should be here.

“Have you been having seizures?” She asked.

“No, I’ve been having some unexplained nerve stuff for a few years. My brain scan was clear so they want to make sure I’m firing the way I should be, I guess.”

“Oh.”

Silence hangs in the air.

“How long have you been doing this?” I ask.

“Forty years” - she responds plainly.

“Damn, sis, you deserve a medal or something. This isn’t a fun job I imagine, shocking people for a living. Do you get a fancy plaque, or a watch or something?”

Aha. A grin. I am winning now.

“No”, she says, “but that’s nice of you to say”.

The tech cattle prods me a few times. 

She’s right. 

It’s not pleasant.

I ask her how many series of these we need to do.

She tells me, once again, those famous four words - “it’s hard to say”.

I decide to stop asking, and focus on breathing

rather than asking questions to assuage my anxiety.

Next, she asks me to turn and face the wall. 

I tell her that I can do it but it’s going to look weird.

I know my body, and I know that I can only rotate one way, so I’m about to be a wrapped rotisserie chicken on her table. I take a moment to assure her that it will look odd, but I can do what she needs. I begin my rotation, slow but sure. At the first turn she says “no, no —”.

I interrupt her. “I got you, sis, I just need a minute.”

I continue my chicken rotation, and finally, I am facing the wall.

She tells me “WOW!! THAT WAS AMAZING!!”
(as If I’m Criss Angel the illusionist or something). 

I decide that this is my moment. I tell her:

“So here’s the thing.

Yes, I appear young, but my body isn’t what most would consider standard issue.

So in the future, if you’re working with disabled folks - when they ask you questions, assume it’s for a good reason. Mine is mostly anxiety, but it’s also because I, like most disabled folks, have non-conventional ways of achieving a goal sometimes. As you can see, I can do what you need, and you can trust me to communicate my limitations - but we need to be on the same team.”

At this point, I step down from my johnny shirt soapbox and she’s still amazed.

“WOW!! I just… I seriously don’t know how you did that!!”
She’s the emoji with the stars for eyes.

“Okay. Next time you’re in bed, just pretend that you can’t move your hips.”

“Wow, you have such great humour!”

“No, I’m serious though.”

“Well, thanks for being such a great patient.”

Ummmmm okay.

-

Well lately I’ve been in therapy. (See? Told you she's on it).

I’ve been doing what’s called “parts work”.

Sometimes, my therapist encourages me to think about the things that I wished had been different as a young person.

It’s… not easy.

We’ve talked to 7 year old me, who asked my mom if girls could marry girls

16 year old me, who was shamed for having lesbian friends

And a 38 year old me who is still untangling the realities of what things were, and what they are.

—

In a flipped upside down world, I would understand that my parents encouraged me to be just like the other kids because they thought that was best. Not because they wanted me to grow up to be almost forty, confused, with some resentment for my diagnosis and now working out using my voice about it for the greater good. (Now, I do understand this. I don't hold any blame or resentment toward them for this - it's all of our first times being human, and most of the time, we were all learning together).

But, In a flipped upside down world, for frig sakes, I’d have been born with a math brain, gone to sports camps and been a loner. My sister and I might have been competing against each other in track and field or some bullshit, and some stupid announcer would probably say he couldn’t tell us apart.

Come to think of it, I’d have probably wound up a politically conservative housewife. 

Personally, I prefer living my life in colour, and flipping around like a rotisserie chicken.

--

PS: This is NOT a partnership, or a sponsorship or anything - but if you're a fellow Cerebral Palsy babe (or love someone who is) please check out the amazing work that Cerebral Palsy Grows Up is doing. It has long been my gripe that CP is a disability that is classified as a childhood disability - despite the fact that it's very much a lifelong diagnosis. Even though it's one of the most common disabilities out there - there's precious little information about managing symptoms into adulthood. CPGU is working to change that. Their podcast is funny and enlightening. Their community is one I wished I'd had at 16.

Thanks for caring, and thanks for reading.