My Thoughts on the Stop Making It Weird Workshop

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I got invited to attend a workshop (remotely, because reasons) called Stop Making It Weird.  I ended up taking so many notes on it, that it felt like a blog post was in order.

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FIRST IMPRESSIONS:

The first thing I noticed was that it seemed this workshop was led by nondisabled people.  Curious (but by now, I expected it.)  Nondisabled people putting their heads together and telling each other about how not to make it weird for us.

They made sure to reassure attendees that they were not judging anything anyone may have done, because even the presenters had unknowingly 'made it weird' for disabled people.  (One presenter shared a memorable example of how she bent down to hug a child in a wheelchair, by way of a greeting.  She had no idea who this kid was.

The kid smacked her in the face.  

"Okay," the presenter said.  "Lesson learned."

Indeed.

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HOW ARE YOU EXPOSED TO PEOPLE WITH DISABILITIES?

Yes, the speaker did comment on the unfortunate wording here.  As it stands, it really does sound like we (as disabled people) are just a bunch of diseases. 

The speaker also pointed out that some people say that "any exposure is good exposure..."  but like...no. 

So, the question was put to the audience, and I waited, curious to see what would be said:

Media:  Someone mentioned there's a contestant on Project Runway that designs clothes for people with disabilities.  (No word on whether the contestant is, themselves, disabled, or not.  Glee was also mentioned.

Parents of Kids With Disabilities Oversharing About Them on Social Media:  And that pretty much says it all.

Target:  Someone mentioned they see a lot of people with disabilities shopping at Target.

Auto Show:  One of the presenters then chimed in to add that she had once seen "a whole flock" of people with disabilities getting out of a van to go to an auto show...

(Did I miss the memo?  Are we diseases or are we geese?  Oh, that's right, we're neither.  We're human beings.)

Cleaning Crew: People with disabilities have also been spotted by nondisabled people as the cleaning crew at various times.  In this case, it was pointed out that about 5 people with disabilities were all cleaning the same small section of floor, and whomever was supervising them (presumably nondisabled) saw fit to tell them when they "missed a spot."

[Image: A sign that reads INSPIRE in red letters]

As a person with CP myself, I was stunned to hear answers that were so distant.  Statistics say that at least 1 in 5 people are disabled.  None of these people were actually disabled? Just me?

Inspiration Porn:

The audience is now informed about inspiration porn and told of its types - Facebook memes, mostly.  And news stories.  One of the speakers memorably said: "Disabled people don't like inspiration porn because it doesn't add anything to their lives."

Now.  It is true that most disabled people I know (specifically adults who have had the chance to individuate from our nondisabled parents) agree that we don't like inspiration porn.  But it's not because we're looking for ways it can benefit us.  That's the whole point.  And that's where not having a workshop like this led by somebody nondisabled does a disservice.  Because nondisabled people look at inspiration porn in terms of what it gives them.

Watching it makes them feel good.  It gives them a boost.  It makes them feel like their community is wonderful for helping out our own.

All inspiration porn does is objectify disabled people.  That's literally all it does.  In other words? It actively harms us.

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USING DISABLED PEOPLE'S CONTENT / STORIES ABOUT US WITHOUT COMPENSATION OR CONSENT

Stella Young's TED Talk I'm Not Your Inspiration, Thank You Very Much was then shared in its entirety.

Now, I love Stella Young.  I do.  I've shared the same link.  But something about watching her speak for 10 minutes - watching her speech be used in this manner sat wrong with me.

Yes, it's a good thing to share and utilize content by actually disabled people.  Especially when you're speaking for 90 minutes about us.  

But.

Do you know how many times I see on my social media (as I follow a number of disabled people) I see that we are asked to come and speak, but then told there's not enough money in whatever budget to pay us?  We are often expected to do emotional labor for free.

...That's sort of what it felt like, as a disabled adult, seeing Stella Young's TED Talk being used to inform the audience, while there were no actually disabled speakers there (that I know of, anyway.)

Grocery Store Employee Lauded as Hero for Giving Disabled Person Opportunity to Stock Shelves:

We all remember the story.  I'm not going to link it.  Because why.  But there was a Facebook post made about this moment, which resulted in a GoFundMe being made for the employee, and a new car for him as well.  (Apparently the disabled person was offered a job after there was enough public outrage, but his family declined it for him...)

The employee and the disabled person were named (first names only) but in most of the coverage I recall seeing, he was not.

The audience was asked the following questions, which I definitely want to answer:

What do you think about the story?

I think if it was about a nondisabled person being given the opportunity to stock shelves because that was an area of interest....it wouldn't be news.  Plain and simple.  I think it's exploitative.

What message does it send?

Sharing stories like this that laud nondisabled people as heroes for being decent to disabled people send the message that we are not worth very much.  

If you've ever been the subject of an inspiration porn story, you'd know that in actuality?  It is traumatizing to be so thoroughly objectified.  To be used.  To know that someone is benefiting financially because of what they chose to do for you.  We feel like an object.  Worthless.  

We are often not asked if we'd like to be featured in these types of stories.  We are not asked if we consent to our diagnoses and other information can be shared with the public.

(It also ignores the deeper issues that exist when a disabled person is dependent on nondisabled people for basic needs and must comply with the exploitation in order to continue to get our needs met.)

What could have been done differently?

Just don't post about it.  Don't take pictures of moments like this.  It's not news.  By doing so, you're just further ostracizing and objectifying us.

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Faltruism: I did very much appreciate getting a word for the thing nondisabled people do where they do things for us...but it's actually self serving, and it does not take us into account.

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12-Year-Old Nondisabled Wrestler Celebrated For Letting Wrestler With CP Win:

The heading pretty much says it all.  A middle-school aged child with CP named Jared wanted to be on the wrestling team.  He got to be on the team.  The next question he (naturally) had was "When can I get on the mat?"

Jared's CP is quite involved.  He uses a motorized wheelchair to get around.  Without it, his mobility is super limited.

Behind the scenes, adults conversed.  The opposing team's coach was asked if he had a wrestler who was, essentially, sensitive enough to handle this situation with some 'kindness.'

The thing is, no one actually told this other wrestler what to do or how to handle the situation.  He went with his gut and positioned himself under Jared, staying still so Jared "won" the match.

What do you think about this story?

This one just really got under my skin.  As a person with CP myself it just felt gross.  I'm not blaming either child, to be clear.  Jared was just used as a plot device, basically, and the nondisabled kid was put in a position nobody should have to be in - where he was pressured to lose on purpose.  

The kids are named.  Both are present during the interviews, but only the nondisabled kid is actually interviewed.  The child with CP sits quietly while his dad talks.

I found it interesting that an audience member at the workshop pointed out that so often nondisabled people don't know what to do in these types of situations.  Media coverage gives them a template and tells them what to do.  This allows them to be more comfortable, but as the person said, "Don't put me in that situation."

I want to address not knowing what to do:

What you do is educate yourselves.

Read and watch content by disabled people.  (The internet is full of it, trust me.)  And no, we are not a monolith, but I think  you'll see overarching themes that the majority of us agree on.

A parent of a child with CP said she wanted the story to focus on how he was included and what he was doing.  "Don't just let him win."

What message does it send?

A couple people in the audience said it best: "It's showing that disabled people can't succeed on their own merit."

And also:

"[Jared] knows the other kid doesn't respect him.  He knows it's pity!"  (Which, yes!  Absolutely!)

What could have been done differently?

I think this question is really important - because a lot could have been done differently.

First, someone could have talked to Jared, connected him to adults with disabilities who are involved in sports to help him think about accommodations he might need.

Secondly, know that putting him with nondisabled kids is putting Jared at a disadvantage always.  CP affects everyone in different ways.  But the competition would be more fair if it were among disabled athletes and if Jared actually got the chance to practice.  (I suspect he attended practice, but did not get to do a lot of it.  Instead, I feel like he was likely treated as a mascot, which, again...ew.)

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LANGUAGE MATTERS:  

Yes, it does!  And the speakers asked for examples of language used specifically for disabled people (not for the general population.  I cringed in particular at "noncompliant" and "behavior" (because hello!  Autonomy and communication anyone?  No?  Just me again?)

There was talk of businesses with horribly euphemistic names around employing disabled people.  Talk of a "make believe mall," where disabled people could 'practice' shopping without actually buying anything.  The idea being - without the stress / fear actual shopping trips might evoke.

HOW SCARY AND DANGEROUS IS THE REAL WORLD?

An audience member commented above here.  Lightly.  In a joking manner.

But the truth is, nondisabled people must recognize their privilege.  Because for disabled people? The world is very scary and dangerous.

We are abused at higher rates than the nondisabled population - even killed - but more often than not?  No one is charged with a crime, because the crime of harming us - or worse - is viewed as "understandable, given the circumstances."

Every single time I go out anywhere, I brace for ableism.  It's the exception, not the rule, if I somehow, make it home unscathed.

Ableism is abuse.  Ableism is harm.  

GOOD INTENTIONS:

I heard a lot about good intentions.  How the Make Believe Mall was made with good intentions because then "people with disabilities have the opportunities to shop without getting arrested for stealing."

Um, what.

People with disabilities deserve to have experiences in the real world as often as tolerated.  But often, we are not taught the things that nondisabled kids are taught, because it's assumed we can't do them.

Give us the chance.  Discuss things with us beforehand (a lot, if necessary...with clear and straightforward language if necessary.)

I was glad this was also pointed out in the workshop - as was the reality that we are more likely to be abused in segregated situations and the reality that the longer we are segregated, the less nondisabled people will interact with us.

The truth is - most ableism I experience is immediately dismissed because "the person probably meant well."

Yes, maybe so.  But that doesn't mean they didn't also harm me.

TRY TO MAKE IT...LOOK LESS WEIRD:

As a final example, one of the presenters talked about going to the State Fair and saw a bus full of people with disabilities arriving.  She saw a woman put on gloves and then proceed to lather the man's head with sunscreen.

"I wanted to cry," she said.  "Seeing him get treated like that.  Imagine if that was you, and try to make it less weird...or at least look less weird."

I have so many questions.

First, absolutely, there should be a conversation between the woman with the gloves and the man.  She should, at the very least, ask his consent before touching him.

But...

There is nothing sad about a man getting help with his sunscreen.  There's nothing sad about it happening in public.  (How many times do you apply sunscreen in public?)  Is it sad that he's being helped?  Sad that she is wearing gloves?  What's the sad part?

The point of the workshop was about, essentially, recognizing ableism in order to call it out and stop it. Hence, Stop Making It Weird (which, we can discuss how not calling the workshop what it actually is is harmful at another time...)  But when you veer suddenly from "call out ableism" to "make it look less weird," that is problematic.

Because, again, it becomes about nondisabled comfort.  Nondisabled people centering themselves.  Their discomfort becomes what matters.  Again.

THINGS THAT MAKE IT WEIRD:

- Nondisabled people teaching other nondisabled people how NOT to 'make it weird' for us.

- Touching disabled people without consent.

- Othering us / talking about being 'exposed' to us like we are a disease.  Or a flock of birds.

- Using our content without asking consent

- Inspiration porn

- Telling us we are being 'noncompliant' when we try to have autonomy and that we are exhibiting 'behaviors' when we are communicating with you.

- Assumptions that the world isn't dangerous for disabled people

- Your good intentions

- You feeling like us getting help in public "looks weird."

HOW YOU CAN STOP MAKING IT WEIRD, ACCORDING TO THE WORKSHOP:

- Universal design (The focus on universal design as a good thing because of how much it benefits nondisabled people felt gross to me, honestly.)

- Speak directly to a person with a disability

- Take time to listen

- Treat people how they want to be treated (Ask preferred language and then use it.)

- When you hear ableism or see it, call it out.

- Always, constantly check yourself

ALSO:

I would add...

- Talk to actually disabled people.  Invite us to speak on issues that concern us.  (Pay us for the time.)

- Know that we (disabled people) are constantly put in the position where we must cater to nondisabled people's feelings - even at the expense of our own safety.

- If we say something harms us, BELIEVE us.

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