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Tag Archives: disability

Dear Netflix, thank you for the character of David on “Travelers”

9 Jan

Josh and I have been watching “Travelers”, a Netflix Original Series. He started watching it during season one because he ran out of “Continuum”, so this was suggested (as Netflix does), and I happened to be in the room when he started watching it.

We both got sucked in.

Be warned, there may be spoilers.

 

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[Image description – River Song from “Doctor Who”, smirking, and the word “Spoilers”]

“Travelers” is about people who come to the 21st century from a much more dire future time, trying to fix what went wrong. There’s protocols, and The Director, and other such things. Travelers arrive seconds before a human in the 21st century is about to die, and basically take over their body with their consciousness that’s been sent from the future (it’s a fine moral like, as they’re not taking a life, but they are assuming one, friends and relatives included.)

One traveler is sent into the body of Marcy, an intellectually disabled woman. Marcy has a case worker, David, who instantly notices Marcy goes from an almost illiterate woman who speaks slowly (can we say verbal apraxia?) to a well-spoken, literate, obviously above normal intelligence woman overnight.

Marcy – and therefore David – become a storyline in the show. David is the nicest of all the guys who, when everyone decides Marcy must have been defrauding people for those sweet sweet disability benefits, jumps to her defense. He doesn’t think she’s a cheat or was using the system. He just thinks that obviously some sort of miracle must have happened.

By the fourth episode, I worried more about David, a secondary character, more than most of the main characters. Because they wrote him to be exactly who I would want to be working with and caring for Maura someday. They showed how he paid for things for his clients out of pocket. How he knew what would help calm them, what their favorite foods were, where they were sleeping on the streets. During a pandemic during the second season, he went straight to the shelter to make sure his clients were okay, were cared for – because someone had to, and that someone was him. When he won the lottery, he gave it all to the people he worked for.

He is, for all intents and purposes, a perfect human being. He is who we all should try to be more like. He is the guy I’d want as Maura’s case worker. And that’s saying a lot.

But last night, as season two was winding up, there was a scene where the one character who’s been an asshole the whole first season, and is a recovering asshole in season two, reverts to his asshole ways when talking about Marcy to David.

He called Marcy “the retarded girl”.

I held my breath.

“That’s a hateful word.” David replied.

And I may have yelled “YES!”

David didn’t let me down.

Yes, they used the world I dislike. But then they addressed its ugliness. It was said to be ugly, by someone who’s behavior was ugly in the show.

And then, it’s ugliness was called out.

“That’s a hateful word.”

And the next time the recovering asshole mentions Marcy – two sentences later – he uses a more appropriate phrase – “mentally disabled”.

He was called out on his ugly behavior and it made a difference. David, once again, showed how to make a difference.

There was no big lecture, no big drama around the use of the word “retarded” – just a simple but pointed addressing of it – “That’s a hateful word.” – coming from a man who devoted his life to the people society overlooks or ignores.

For all I’ve seen people defend the use of the word “retarded” in shows and music and books because “that’s just how people speak”, I’ve never seen where then the use of the word is questioned by another character. It’s usually dropped by someone and then life carries on.

But not this time.

This time, some writer for Netflix deliberately chose it. And then deliberately chose to call it out for what it was – a hateful word. And then showed the one who use the word choose a different phrase.

Because while it is a word some people use still, there are those of us who are willing to call them out for that use.

And apparently, Netflix is now one of us.

So thank you Netflix. I know it was just two lines in one episode of a show, but dang if it didn’t mean the world to this mama.

Note – I was totally not paid in any way to endorse this show. No compensation was earned. I do totally recommend this show if you are sorta into sci-fi and like well-rounded characters. 

POST-FECKING-SCRIPT!

Okay, I am now writing from the Great Beyond.

Because when sharing this on Twitter, I did what good social media gurus are told to do – tag and hashtag.

And I got a response.

I got three responses.

First, from Eric McCormack, yeah, the lead actor in the show (and also producer for at least Season 1.) 

 

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[image description – tweet from Eric McCormack]  – “Great Letter, Phoebe, thank you. The writer was @ken_kabatoff, and @bradtravelers created David for @PatrickGilmore because there is no one better at being a great human being.”

 

And then Patrick Gilmore, the actor who plays David, chimed in –

 

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[image description – tweet from Patrick Gilmore] “Thank you for your letter, @herdingcatsblog. That scene was all @ken_kabatoff & @bradtravelers. I was blessed to have an Aunt with Down Syndrome. I got into fights in grade school with anyone who used the “R” word. I hugged Ken when I read that line 🙂 @TRVLRSseries @netflix”

And THEN, this appeared from the WRITER HIMSELF, Ken Kabatoff –

 

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[image description – tweet from Ken Kabatoff] “I’m not crying, YOU’RE crying.

 

So now I’m dead, but in a good way.

Now everyone, go watch this show. Because it obviously is made up of a bunch of really decent human beings – and because I already need Season 3.

 

 

 

 

 

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Mixed messages

10 Dec

There’s this phenomenon that happens when your child is being evaluated for any sort of difference.

You are inundated with mixed messages.

Pelted by. Poked with. Swimming in. Slapped repeated by.

Mixed messages.

On the one hand, you’re told “Accept your child for everything they are!”

On the other hand you’re told “What’s the cure for your child’s issue?”

On the one hand, “Relax! God doesn’t make mistakes?”

On the other hand, lists of questionnaires from doctors asking you how you might have caused this during pregnancy.

One hand, “Your child is perfect the way they are.”

Other hand, “I could never handle a child with issues.”

And so on, and so forth, world without end, amen.

This is what I got for…oh…probably three years of Maura’s life. I still get it at times, but for three straight years or so, it was constantly there.

I was told to accept my daughter but cure her, because I shouldn’t really accept her as disabled. I was told to calm down, but that I wasn’t taking this as seriously as I could be, as I should be. I was told it was great that I was laid back, but good moms are Warrior Moms. I was told not to be dramatic about things. I was told how having a child like mine was too hard. I was told having a child like mine was easy. I was told she would catch up. I watched her fall further behind. I was told that everything had to happen by age five or else she’d be behind forever. I was told how that wasn’t true, that development could happen well into her twenties. I was asked “Was there anything that happened during your pregnancy that could have caused this?” in a dozen different ways. I was told not to give up hope. Evaluations hade her sound more disabled than anyone gave her credit for. I was told that I was the expert on my child. I was told that they knew what was best for her. I was told to trust my instincts while everyone around me told me how those instincts were wrong. I was told I wasn’t doing enough. I was told I wasn’t investing enough time in my child. I was told to take time for me. I was told they couldn’t help us.

I was told a lot of things. 

So many things. 

It’s amazing, the moment you say “I think there’s something wrong with my child.” how everyone comes out of the woodwork with an opinion on what you should be doing. Most of those people aren’t their to actually help though. They’re just there to plant a seed of doubt in your brain, which is already an acre of doubt and doesn’t need more seeding.

I don’t know when it stopped with Maura. Maybe when she developed epilepsy? People take seizures pretty damn seriously, and it’s something they know, and is real to them.

Maybe it’s when I was able to stop taking all the “advice” thrown at me. Like when one preschool mom told me the key to potty training was consistency, and I just needed to be consistent with Maura. I told her she could come over to my house any time to help out.

She never did.

But I knew she wouldn’t show.

It was all around the time Maura was four. A year into therapy for myself, three years, multiple tests, and MRI and EEG for Maura.

Three years of mixed messages being thrown at me, I was finally able to send a message to the world.

“I got this. I’m the expert on her. I don’t care what your opinion is. No, I’m not going to rub her down in essential oils because that won’t fix her brain. What’s on paper doesn’t matter, and doesn’t tell the whole story. She is who she is, and if you don’t like that, there’s the door.”

So to you moms and dads who are starting a journey of your own, be warned – there are many many many opinions out there. People will tell you what to do, how to do it, and what to feel. They will be everywhere, and they love to give their opinions unsolicited.

Here’s the thing – 

You don’t have to listen to them.

Just nod, smile, say “That’s nice, but we’re going to keep doing our thing, thanks.”

You do you.

Your path is your own, and you can hike it however you want.

 

 

 

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[image description – My two daughters, both about the same height, walking through the woods, on a dirt path, the sun shining down on them]

 

 

The terms we use

13 Nov

I read a post by a disability blogger I follow, about the use of infantilizing words and phrases we use in lieu of “disabled” – like “Differently Abled” and it’s shorter term “Diffabled”.

I’ve always hated differently abled. Diffabled just is ridiculous.

I got what this blogger was saying, because I’ve seen grown adults do gymnastics to avoid the word “disabled”. Like the one I heard, where the person used the term “special abilities” – I interrupted slightly and pointed out that the phrase they used made them sound more like Superman. My daughter isn’t a member of the X-Men, she is disabled.

The part of the post written by the disability advocate that made me pause was that they considered “special needs” basically as bad as “differently abled”.

There is a part of me that gets it. It is a bit cotton candy of a descriptor, and it’s something that people usurp unnecessarily. “We ALL have Special Needs.” they’ll quip in a show of false solidarity. No Gladys, your preference to mayo over mustard on your sandwich is not the same as my daughter’s apraxia. Thanks for playing.

But there’s a part of me who has had the experience where we’ve had to use it to describe our daughter, and would still use it even though I kind of knew better. 

Why?

Well, part of it is because of society. When you think of the word “disabled” or conjure up a picture of a disabled person, what picture pops up in your mind’s eye? I bet there’s a wheelchair involved, or a person with Down’s Syndrome. Those are the disabilities we’ve come to know as society.

If I walked out of the disabled toilet with my disabled daughter in tow, we will sometimes get a stink eye from those waiting. Because my daughter doesn’t look disabled, therefore, we have no right to use it. Even though she IS disabled.

Society reminds me that my daughter doesn’t fit the visual of “disabled”. 

Add to that, the fact that my daughter doesn’t have a diagnosis. We can’t say “She has autism.” or “She has Fragile X Syndrome.” So we have no label that society can embrace warmly and say “Oh, I’ve heard of that because some celebrity’s kid has that.”

Frankly, we weren’t even allowed to use “disabled” with her for the longest time, partially because we didn’t have that qualifying diagnosis that made her legitimately disabled in society’s eyes. Oh sure, the girl wore ankle braces and was in OT/PT/ST and had a laundry list of issues – but the school kept checking off the box of “developmentally delayed” until it was ridiculous. As the special education director didn’t like spending SpEd money on SpEd students, I’m pretty sure ticking off the “delayed” box meant that they could spend less on her.

But even before that, I had people tell me that I was overblowing Maura’s issues. That she’d be fine. That it wasn’t like she had a real disability like other kids they knew. Doctors at first said she’d probably outgrow her delays. They were, after all, just delays. They weren’t real disabilities. If they were, surely she would be worse off, have a label, have a diagnosis.

You can see how we hesitated to use the term “disabled” with our daughter. Not because we saw it as a dirty word – but because in many ways, we weren’t allowed to use it. 

It wasn’t until we moved to Ireland that we started feeling like it was okay to use the phrase “disabled” with Maura. Mainly because in Ireland, they looked at her and said “Yep, she’s disabled, here’s a school for disabled kids, here’s some disability benefits, what do you mean people in the States didn’t think she was disabled? And what’s wrong with being disabled anyway? Nothing. Nothing’s wrong with that.”

Just like that, we were legit – though I still got a bit of a stink eye coming out of the disabled toilet with her at the shopping centre at Christmastime with the long lines. I swear, we weren’t cheating! She is disabled!

Because at the end of the day, Maura still doesn’t look disabled. We still don’t have a diagnosis. All we have is “intellectual disability”, which is a mouthful and honestly, I don’t think really describes her well. It’s too generic, and doesn’t take into account her savvy ways and cleverness.

Just today though, I came across a blog written by a mom of a child with physical disabilities. And the tag line for it stated how she was writing for disability and special needs awareness. I wondered – if they’re both supposed to be the same, why the “and”? They aren’t two different things.

And just like that, I understood better the disability advocate’s point of view. That by using “special needs”, we’re downplaying actual disabilities. 

Something I should know already because it happened to us.

Or maybe, because it happened to us, I was too close to things, and needed that fresh perspective.

I’ve been working to phase out my use of “special needs” – but I need society to catch up with me, to follow my lead.

So please – I’m asking you – call my daughter disabled. Consider her disabled. Her disabilities are legitimate. Her disability is real even if it doesn’t have a name, or if we don’t know the cause of it. In a way, we’ve worked really hard to earn that label of disabled. It isn’t an insult…unless you think being disabled is a sad burden of a life. Then you need to rethink a lot of things, because my daughter’s life is a fabulous one.

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Maura – 2011 – Killiney Beach, Ireland [image description: little brown haired girl in a light pink top and darker pink skirt, wading slightly into the Irish Sea, hands up in surprise as a wave hits her ankles]

 

 

 

 

 

 

 

 

 

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