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I’ve been away from Tumblr too long.

When I started disability blogging 2 years ago, I also started reading disability-related Tumblr blogs more or less daily. It helped me get a feel for, I suppose, a younger, more spirited, less careful community of disabled people. I carried on with regular Tumblr reading until maybe 6 months ago, and then for some reason fell out of the habit. I kept posting to my own Tumblr, but only rarely latched onto or “liked” other stuff on Tumblr.

I found the following this afternoon, a reblog by WheelieWifee, of an April post at Words N Stuff:

1. Ignore their stares. You owe no one an explanation.

2. If they are rude, be witty. If they are rude, be sarcastic. If they are rude, be ruder.

3. Never sacrifice yourself for their approval. You don’t need it.

4. Laugh in the faces of those who call you “faker,” those who call you “scammer,” those who call you “liar.”

5. Walk as slowly as you like. Let them sigh loudly behind you - you are doing nothing wrong.

6. If they’re in your space, tell them. If they don’t move, make them.

7. Don’t feel obligated to “look sick.” Don’t feel obligated to “look well.” Don’t feel obligated to look any which way except how you do right now.

8. Use their words against them. Take the ones they hurl at you and embrace them. They are yours now.

9. Flaunt your “imperfections.” Show off the things they hate. Put stickers on your braces and tattoo the hip that never stays in place. Don’t let them ignore you. Don’t let their eyes slide over you.

10. If they hurt you, if they slip past your defenses and under your skin, if their ignorance is more than you can handle. If they hurt you. Don’t let them know.

cripple punk

april 26/30//q.e.l.//

I don’t agree with every bit of it. For instance, I think that if “they hurt you,” it’s sometimes important to “let them know.” But it’s all good stuff to think about. It’s the sort of thing disabled people who are still struggling with their disabilities and internalized ableism need to read. I’m talking about youth with disabilities, and people of any age dealing with new disabilities. Parents and families should read it, too. It’s the nuts and bolts of disability pride, in very concrete, non-theoretical words.

Must not forget Tumblr.

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This

"Old Pain I’m used to: the tightness in my hips when I don’t stretch in the morning, the pressure where my legs meet my back when I walk too far. It’s not that I don’t feel it; it’s just been there for so long that I know not to get nervous about it anymore. New Pain is where it gets scary because it stops having a name. I can’t immediately catalog it or diagnose it as benign. At best, disability allows you to create a tenuous peace with your body, and anytime it decides to violate that mutual agreement can be terrifying. You take the time to figure it out — what it likes and dislikes, where it functions best — and stick to that routine, until New Pain reminds you that you’re never quite going to have this figured out.” — Know Me Where It Hurts: Sex, Kink, and Cerebral Palsy

It's only part of a longer, quite excellent piece by a woman with Cerebral Palsy, but I related to this bit so strongly that I just had to take note of it.

This.

Very much this.

Via the Disability Fashion Project Tumblr blog.

Quote

“You listen to me grasshopper. There is going to be a million Buddy Garritys out there, who will try to tell you aren't worth anything. And you just gotta look 'em right in the eye and flip him the bird … ‘Cause the Buddy Garritys of this world, they’re a cancer to you and me.” — Herc talking to Jason, Friday Night Lights.

Quote

“You know, I hope you know anyway, that my default setting is pretty positive. But I have to say it’s really rather hard to try and find a way of putting a positive gloss on that sequence of events. Would you like to have a go?" -- Ian Fletcher (Hugh Bonneville) in the BBC TV series, Twenty Twelve.

I share this quote because it is such a perfectly passive-aggressive putdown, and I can’t help imagining a disabled person using the same words in response to bureaucratic or support service breakdowns.

A Fine Turn Of The Phrase

I don’t know why, but I just really love this description:

"Do you know the feeling of when it is like every step is wading through treacle? You don't need a physical disability to know how that feels. Combine that with a left leg acting like a bung shopping trolley wheel and a left arm that is twisted like a pretzel and it really is a pretty picture.”

Dear Internet: I am an Idiot … yet again

She Types Things - April 30, 2014

Via: Love That Max: Special Needs Blogger Weekend Link-up.

Quote Of The Day

“I made a friend! I made a friend! Maybe there’s nothing wrong with me and I’m just a normal person!”

     -- Mark Corrigan, Peep Show

Best Article On Sub-Minimum Wage

When Should Disabled People Be Paid Less Than Minimum Wage? Curtis Decker Says Never

Angelo Young, International Business Times - March 11, 2014

This is the best article I have ever read explaining the issue of sheltered workshops and the 14(c) certificates, which employers to pay certain disabled people less than minimum wage. In addition to underscoring what’s wrong with the practice, the man interviewed, Curtis Decker, does a great job of explaining why anyone still supports this. Here is an excerpt:

"IBTIMES: What do families think of their disabled relatives working in an environment where the employer determines the minimum wage in accordance to the Section 14(c) rules?

DECKER: Some want their disabled relatives integrated [working in a non-segregated environment for a private employer] and making at least minimum wage. But you have others who say, “Listen, leave it alone. It’s OK. She gets her social security check. She makes a little extra money. She gets out of the house every day. She’s not sitting at home watching television. I can go to work and this is a place she can go to. And you come along and want to disrupt this thing, you’re going to make my life miserable.”

IBTIMES: How do you answer that?

DECKER: I have to tell them that this isn’t about them. Our job is to represent the person with the disability. You can go into a sheltered workshop any day of the week and go up to workers and find someone saying they like the job, and that their friends are there. Like anybody else, you’ve been doing the same job for 10 or 15 years. You can’t make an informed decision if you haven’t experienced anything else. We would have the same issue when going into institutions – you find people who are asking you to get them out of there, and others who don’t know what the alternative is, or where you want to take them, or whether they’ll be separated from their friends if they get out."

I have just a couple of quibbles about the article.

Decker correctly points out that the biggest users and defenders of the 14(c) program are other disability-repeated non-profits. However, he fails to distinguish between old-line, paternalistic oriented service agencies and the more advocacy oriented, modern, consumer-driven disability organizations that don’t use the program or anything like it, and are fighting hard against it. That includes the National Council on Independent living and the hundreds of local Centers for Independent Living around the U.S., the Autistic Self-Advocacy Network, the National Federation for the Blind, and the National Council on Disability. In fact, whether an organization supports or opposes sheltered workshops and the 14(c) certificates program is a good way to tell what kind of disability organization you are looking at.

I also think it is important in articles like this to remind readers that this isn’t about a handful of large corporations. There are similar sheltered workshop programs in large, medium, and small communities all over the country. One way to start working on this issue is check to see if your local disability agencies use the practice, or if they oppose it.

Other than that, I’d say this is essential reading for anyone with an interest in disability issues.

Necessary But Not Sufficient

I heard a phrase the other day that struck a chord with me, that I think can help us deal with the idea behind that infamous Scott Hamilton quote:

“The only disability in life is a bad attitude.”

The phrase I heard was, “… necessary, but not sufficient.”

I think this more properly expresses the role of mental attitude for disabled people. Having a positive, optimistic attitude is probably necessary for achieving independence, happiness, or whatever is your definition of success. But attitude alone isn’t enough to overcome the real barriers we encounter. A positive attitude may be necessary, but it is not, by itself, sufficient.

Now, what constitutes a “positive attitude”? That is another question entirely.

"Not The Fun Kind"

From the Demonically Disabled Tumblr blog.

I’m going to break my own rule and add something to this photo. It starts with a comment on the photo from the blogger / selfie-taker herself:

"I never ever ever ever ever ever want to walk again. That was hell. And not the fun kind.”

I am aware that for some people, the notion of disabled people NOT wishing to be less disabled … of wheelchair users NOT working their asses off to walk again someday … is quite controversial. I dare say for quite a few people it sounds utterly irrational, either “crazy” or some sort of contrarian stance. Well, for some of us it is somewhat philosophical. But for others, it is completely practical; doing things the “normal” way hurts, and is just less practical, than embracing tools and adaptations. I walk, it works for me and my everyday needs, and I am glad for all the surgery and physical therapy in my early years that made that possible. But, I used a mobility scooter when I was in college, and when I have to travel through an airport, gimme that wheelchair man.

Oscar Night Followup

I was re-watching Lupita Nyong’o, Academy Award acceptance speech, again appreciating the emotional core of her remarks ...

"It doesn’t escape me for one moment that so much joy in my life is thanks to so much pain in someone else’s.”

Now, Nyong’o was referring to the fact that her role in “12 Years A Slave” (which I haven’t seen yet), was based on a real-life woman who was, in fact, a slave. If I understand her meaning, she was acknowledging the fact that her good fortune is based on the reality of a very difficult life.

While I in no way would compare the life of a slave to living with a disability … a mistake that I’m afraid a lot of people might make if the thought were suggested … it did cause me to wonder what Daniel Day-Lewis said in his acceptance speech when he won the Best Actor Oscar for his portrayal of the real-life man Christy Brown in “My Left Foot". So, I looked it up. Here is the video, and a transcript of his speech:

http://disabilitythinking.blogspot.com/2014/03/another-look-my-left-foot.html

1989 Academy Awards

Daniel Day-Lewis Best Actor Award Acceptance Speech

"You've just provided me with the makings of one hell of a weekend in Dublin."

"I shared Christy's life for a while with a remarkable young actor called Hugh O'Conor. But for everyone involved in the film, all our desire to make the film, all the strength that we needed, all the pleasure that we took in making the film came from Christy Brown. When he was alive he needed very little encouragement to make his voice heard. Now he needs a little more. And I'm truly grateful to you that in honoring me with this award you're encouraging Christy to carry on making his mark. Thank you very much indeed.”

It is a very gracious and succinct speech. He didn’t say anything offensive or condescending. He spoke about giving new voice to a man who when he was alive, struggled in particular to be heard and understood. That suggests D-Day "got it", that he drew good conclusions from his experience “with” Christy Brown. Day-Lewis’ speech doesn’t have quite the empowering ring that Nyong’o’s had, but I think that in a speech about a disabled person, by a non-disabled person, it’s probably best to keep it simple and not try to draw too many dubious connections.

I wonder what Tom Cruise would have said if he had won Best Actor instead, for portraying another real-life disabled person, Ron Kovic, in “Born On The Fourth Of July”?

Also, unrelated bonus for seeing other familiar faces how they looked in early 1990: Jodie Foster, Robin Williams (with a regrettable ‘stache), and Jessica Lange.

Why Disabled People Hate Bureaucracy

Okay, I guess everyone hates bureaucracy, but disabled people hate it more, because we have to deal with it more often, and the stakes are usually higher, and consequences worse, when bureaucracy fails.

Case in point:

"I’ve not had a shower for nearly 18 months, and it’s been about 2 years since my last bath. I have a wet room but no suitable shower chair, which they won’t give me until I have a hoist, which they won’t give me until I’ve had the case conference, which I can’t have until I’ve seen the consultant, who I can’t see until I can get transport sorted (but is meant to be happening in February). Yeah, complicated.”

From a blog post by Dannilion found at livingwithdisability, via too brain fogged for this.

Light Blogging Notice / Keeping It Simple

I’m working on another grant application for my local Independent Living Center, so my posting may be light this week. For today, I just want to share a priceless little post by one of my favorite Tumblr bloggers, wheeliewifee. She’s responding to someone who asked about who should or shouldn’t use accessible bathroom stalls:

"The accessible bathroom question has a very simple answer and I think that’s why I get so impatient with receiving it over and over: If you need it, use it. If you don’t need it, stay out.

I’m not a doctor. I have no idea whether a person [is] capable of shitting in a regular stall. So people need to have a conscience, be a grown up, and figure it out for themselves!”

Sometimes it’s a relief when someone just cuts to the chase. I mean, a lot of these disability issues aren’t that complicated folks, and frankly, some of us who have disabilities are the ones that make them more complicated than they need to be.

Our Religion And Our Science ...

"My religion can never be science. This is the difference between navigating the world and explaining it.” -- Ta-Nehisi Coates, The Atlantic - January 31, 2014

It’s risky to take insightful words meant for one discussion and apply them to another. I’m going to do that now, though, because when I read the lines above in an article by Ta-Nehisi Coates about different ways that African-Americans process their history, culture, and politics, it nearly broke my brain because it seemed completely applicable to a basic duality for the disability community.

What’s our duality?

On the one hand, there are things we as people with disabilities can do, and ways that we can behave, that can help us navigate this world successfully. We can educate ourselves, master our disabilities as best we can, plan the accommodations we need so its easier on everyone else, dress well, and practice ignoring the stares and always smiling. These things will help, and not doing them usually makes life harder for us.

On the other hand, the problems we face aren’t primarily because of things we fail to do or how we act. “Putting our best foot forward” doesn't remove the fundamental barriers that confront us. They exist independently of us. The world isn’t designed for people like us, and it’s getting better only very slowly. Being polite doesn’t cause ramps to materialize. Education does’t guarantee a job or even a decent shot at one. Smiling in the face of prejudice is often impotent, or worse, complicit. People have misguided and even hostile impressions of disabled people that they’ve learned on their own, whether they’ve met lots of disabled people or not. The roots of ableism are very, very old, lodged still deep in the lizard brain.

Which is why the quote rocked me so hard. I believe two contradictory things with equal conviction:

1. Every disabled person has available to them tools and strategies for making their lives better, and we are individually responsible for locating and using those tools to the best of our ability. If we aren't sure what those tools are, or where to find them, there are a lot of us around who are willing to help each other. I believe this to be true.

and

2. The most significant barriers we face aren’t of our own making, and nothing that we do individually is going to shift them an inch. There is hope for change if we work together, but it won’t always be fun, it won’t be easy, and it will sometimes make people uncomfortable. But if we don’t engage and try, then the only successes we’ll see for disabled people will be the kind of anomalies and one-off lucky breaks that get featured on slow news days. And thank God for them! They remind us of what success can look like, and chip away at non-disabled peoples’ preconceptions. It’s just that there are hard realities and quantitative facts at play that individual moral fortitude alone isn't going to change. I believe this, too.

The first is about self-help, and you could say it’s our religion. It’s a faith that if we try to be the best people we can be, we will see some reward. Also like religion, we commit to it for it’s own sake, even when we can see that it makes little difference to objective reality. 

The second is the objective reality that resists attitude, pluck, and even hard work, but can be analyzed, mapped out, and understood. And if understood, changed or at least shifted with smart, thoughtful collective action.

“My religion can never bee science. This is the difference between navigating the world and explaining it.”

It has never been clearer to me that we need both in the disability community, and that we need to evaluate each effort differently, by different criteria, because they have different, though complimentary goals. It's why Centers for Independent Living do both services and advocacy.

For what it’s worth, it feels good to be able to think about it this way.

Don't Wait, Don't Hide

"I used to read about  certain countries in Europe after they threw bananas at some black soccer player, and say to myself, "I'll never go there.” But I am a little older now, and I am more confirmed in the fact of this one-shot life. And knowing that this is not a dress rehearsal, and knowing, too, that questions are burning in me, and feeling that my whole purpose here is to observe, I simply don't much care anymore. I am past the age where one can afford to sit around waiting for the world to autoliberate from its various hatreds. And I have had my hatreds too. Like most humans.” -- Ta-Nehisi Coates, The Atlantic.

Coates here is writing about no longer letting the possibility of prejudice deter him from exploring and engaging with the world. Mostly he's talking about racial and ethnic prejudice, but his words speak to me as a disabled person, too. If we rely on people to "autoliberate" themselves from ableism before we'll engage with them, we'll have a very long, boring wait. We should definitely speak out about ableism, but we should also try not to hide from it.

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“There is a huge difference between, ‘Be empathetic, care about other people, think of somebody other than yourself,’ and ‘No matter how badly you’re being treated it’s wrong to be angry’ … It’s good to be the bigger person, but you're not obligated to not be angry."

— Linda Holmes, “Pop Culture Happy Hour”

Quote

Just read this. Had to share it:

"I have heard a thousand times over, 'I’d rather be dead than in a wheelchair.' Oh. OK. Then could I have a taster on hand before I eat dinner at your place?"

 -- Disabilityaware.tumblr.com