Rebekah Taussig’s Insights on Managing Non-Disabled People’s Need to Help

[jesse_the_k]

This essay at TIME magazine captures the "hlepiness" dynamic so well.

I've Been Paralyzed Since I Was 3. Here's Why Kindness Toward Disabled People Is More Complicated Than You Think

It’s 3400 words, and it’s worth every second spent reading. I want to transplant it into the brains of so many people.

But it’s the abundance of kindness that gets me all tangled. It’s the fly that won’t stop buzzing, won’t hold still long enough for me to swat it, won’t die.

It’s harmless, really. What damage can a tiny fly do? But then why do I feel like tearing down the house every time I hear its familiar buzz?

[… snip …]

Disrupting our understanding of kindness is a direct threat to our sense of self and understanding of the world around us. But as a veteran Kindness Magnet, I’ve found people’s attempts to Be Kind can be anything from healing to humiliating, helpful to traumatic.

[… snip …]

We look through the eyes of nondisabled people so regularly that we forget to ask even one of the many questions hovering around the disabled recipients of “help.” Did you want anyone’s help? Was it even helpful? What needs did you have that remained ignored or misunderstood? What could be put into place so that you aren’t forced to be dependent on the kindness of a stranger who may or may not be there next time?

[… snip …]

"Are you telling me I can’t open the door for a disabled person? How do I know when someone does or doesn’t want my help? What are the rules?” These inquiries remind me of the questions that come up when we talk about sexual consent. Human beings are complicated, and communication can be nuanced. “No, please don’t. This is making me uncomfortable” isn’t always expressed through language. You have to pay attention to the human person in front of you.

https://time.com/5881597/disability-kindness/

I use a power wheelchair for community mobility. When difference is readily visible, it means coping with people who want me to be their good deed for the day. (I have non-evident impairments as well and that comes with its own frustrations.)

This essay explains why that's so hard! It’s an excerpt from her book, Sitting Pretty: The View From My Ordinary Resilient Disabled Body due out next week.

hardback
DRM-free audiobook
ebook

Comments

[sasha_feather]

What a lovely essay. :)

[jesse_the_k]

Yeah, I ordered the book right away. She has a way with words.

[davidgillon]

I read it yesterday, and it's so good. But I'm not sure it addresses how threatening that demand to help can be.

I think you're on the right lines with people who want you to be their good deed for the day, but for a lot of them I think it's that they want to be seen helping us as their good deed for the day. It's street theatre with us as the prop, and people don't expect their props to talk back and have needs of their own. And some - lots - of those people react badly to having their star turn taken away from them.

Too damn true

[jesse_the_k]

One of the reasons I love my power chair is it's got two large batteries and altogether we weigh around 500 lbs. That heft helps me feel stronger in declining help because I can literally zoom away at 6mph.

(And that's another reason why last year's tip overs were so fucking scary -- the chair's solidity became my problem instead of my asset. Huh.)

"Street theater with us as a prop" .... yes!

There's a lot of theatrical performances in our society right now -- security theater in air travel; "heroizing" workers in high-virus occupations; redefining police officers as brave soldiers; proforma compassion in the endless emails from multinational corps in support of Black Lives Matter.

[isis]

That was a good read. I was struck by: All I see when I look at you is a beautiful woman. I don’t even notice your wheelchair! It’s meant as a kindness, but it feels like erasure as it reminded me strongly of the bit in White Fragility about why "colorblindness" is actually a form of racism - how people saying "I don't see color! I feel everyone's equal no matter if they're Black or white!" erases the very real differences in treatment between Black and white people, and makes it harder to talk about institutional racism. It's a good reminder that I need to pay attention to my own speech and reactions in this sphere as well.

[jesse_the_k]

Indeed.

I was raised in that colorblind ethos, and bought in to it even as I always noticed and classified people along racial/ethnic/color lines.

When I first encountered it as a wheelchair user, it blew my mind. Yes, I need you to acknowledge that access for the chair determines whether you'll be seeing me at all!

[firecat]

All I see when I look at you is a beautiful woman. I don’t even notice your wheelchair!

Then you'll be in for an unpleasant surprise when my seated mobility device rolls over your toes.

[jesse_the_k]

Roarrrrrrrrr!

[bibliofile]

Whee!!!

[smilingslightly]

That was a good read that I'll be passing along.

That dude standing right there staring, waiting for her to 'prove him right' by failing was chilling.

The whole did a good job I think of pulling together a number of examples and addressing defensiveness while keeping her current writer's voice clear and strong.

It's so frustrating and humiliating becoming someone else's self-soothing object and also such an insidious thought pattern, creeping in when we (I) try to substitute guilty shortcuts for the longterm work of addressing systemic and internal privilege/bias.

Thank you.

[jesse_the_k]

becoming someone else's self-soothing object

Wow! You capture the actual distance we perceive even when the other person feels like they're being a social human.

[bibliofile]

Ooh, good article, thanks. Own voice, so good.

[jesse_the_k]

<3

[tarasacon]

Saving this to read when I have more energy.

[jesse_the_k]

I hope that's as soon as you want it to be.

[tarasacon]

Decided that Right Now was a good time. So many feels! Regret for some of my able-bodied ignorance, back when that was true, for navigating the well-meant interventions now that I use a cane, and for the years in between when my various disabilities were usually invisible.

Thank you for sharing this! Your excerpts are well-chosen.

<3

[jesse_the_k]

...at least we're capable of learning, eh?

Even though I've been dealing with this crap for decades, it was heartening to read that my frustrations are not a personal failing but a society-wide pattern.

[luzula]

Thanks, that was an interesting read!

[jesse_the_k]

Did it teach you anything new? (Not that you need to learn new things, just curious whether it would be a good introductory article.)

[luzula]

Ugh, was slammed with work today. Hands hurt and have no brain. Will reply later!

[jesse_the_k]

Take all the time!

[luzula]

So! Have recovered somewhat, though still tired, and more work this week...

Yes, it taught me something new in the sense that her story of her experience and the unhelpful ways in which people wanted to help her was not something I had thought about before.

But there may be a cultural difference in the sense that Americans are MUCH more likely to come up to a stranger and offer them unsolicited help than Swedish people are, so probably someone using a wheelchair in Sweden would have a different experience.

Thanks

[jesse_the_k]

re: offering vs insisting

I am no longer surprised that a stranger will holler at me from 20 feet away "Stop! Wait! Let me get that door for you!" After three decades, I can calmly wave a hand and say "No worries!" and try to get through the door as quickly as possible before they come to stand in my way.

The thing that still annoys is when the response is "Are you sure?"

re: Cultural difference

Is this a general reluctance to interact with strangers? I'd assumed that your long social-democratic history (and er brutal climate) would support a "help the stranger" aesthetic?

But then upper midwestern US has a high concentration of Norden immigrants, stereotyped as Minnesota Nice -- reluctant to speak out, shy, even passive-aggressive. The MPLS Star Tribune isn't buying it.

Re: Thanks

[luzula]

What the newspaper says: "a tendency to be polite and friendly, yet emotionally reserved; our penchant for self-deprecation and unwillingness to draw attention to ourselves".

Yes, I think that describes Swedish culture pretty well. It's not that people aren't willing to help you, they just don't want to intrude and don't want to draw attention unnecessarily. But I guess you'd have to ask a Swedish wheelchair user about what they experience, too...