Tuesday, December 16, 2014

Just Stop It

Scrabble tiles spelling out the word "Words"
I was just visiting a new adaptive product and services website and I noticed some interesting language and branding choices. The website is named “Ethos Disability”. The URL is ethosdisability.com. From context, too, it's clear that the site’s common denominator is disability.

Yet, in the About section and elsewhere on the site, the owners always refer instead to “additional needs” or “additional / changing needs”. I suppose this is yet another effort to solve the non-problem of how horrible the word “disability” is. At least the actual topic is identified elsewhere. Otherwise the site would be really offensively vague … a sort of nudge-wink non-acknowledgement of what we’re really talking about. Which, to me, puts a lot more negative connotation on disability than “disability”.

Just stop it. “Disability” and “disabled" are fine.

By the way, it Ethos Disability really does look like a promising new website.

Disabled TV Character Face-Off: Fourth Round

President Josiah Bartlett beat the original Chief Robert Ironside in the third round.


The fourth round features Geordi LaForge vs. Tyrion Lannister. Which character do you like best?


Photo of character Geordi LaForge
Geordi LaForge
Actor: LeVar Burton
Disability: Blindness.
Role on the show: Major character in ensemble cast.

Photo of character Tyrion Lannister
Tyrion Lannister
Disability: Little Person.
Role on the show: Major character in ensemble cast.

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Monday, December 15, 2014

Long Term Care ≠ Nursing Homes

black and white photo of a pad and pen on top of a computer keyboard
Sarah Kliff, Vox.com - December 14, 2014

Sarah Kliff, who is in my opinion one of the very best journalists on the health care beat, has a very interesting article at Vox.com about how countries pay for “long term care”. Those of us with disabilities and related to disabled people certainly know what a mess it is, but sometimes we don’t know why, and non-disabled people mostly don’t have a clue. Worse, it seems like even the social democracies of the developed world, who usually do human services better, don’t have long term care figured out either.

I hope we get a followup article to this one, because unfortunately, the article equates “long term care” with “nursing homes”. The title says it’s about paying for nursing homes, but the article is about long term care. They aren’t the same thing. Nursing homes is one model of long term care. Others include agency-based and consumer-directed home care, “assisted living”, “retirement communities,” and probably other models, too. It is very dangerous to keep equating the problem of long term care with it’s most outdated, expensive, and, frankly, most hated solution … institutionalization in nursing homes.

In fact, the woman who’s story Kliff cites, a woman with paralysis “from the waist down” is far more likely to need home care than a full-time nursing home. Plenty of people paralyzed “from the neck down” live in their own homes, too, with visiting care and personal assistance. In most cases, this more targeted type of care is at the same time less expensive and less restrictive. The CLASS Act, which Kliff also cites, would have helped with home care as well, and the Community First Choice program is helping in several states as we speak.

Again, this is all stuff that means a whole hell of a lot to people with significant disabilities, and virtually nothing to everyone else … even though it should be common knowledge to everyone. I hope to see more of this kind of work from Vox, and a bit more care in defining the scope of definitions and discussions.

Friday, December 12, 2014

Question for the Disability Community

What do disabled people find funny, ridiculous, affectionately eye-rolling about other disabled people, or about disability culture as a whole? What makes us laugh at ourselves?

Please share your answers in the comments below.

Thursday, December 11, 2014

Class Photo Time Again!

Lauren Zakalik, ABC / WFAA Channel 8 - December 9, 2014

Didn’t something like this happen just last year? Why yes. Yes, it did.

There is one bright spot in this story, compared to the one from last year. Here, the student is extensively quoted in the article, and seems to have at least tried to be involved in the picture setup and negotiations. On the other hand, it bugs me that even in its apology, the school district officials refer to Tyson’s mother, not Tyson, himself … as if the offense was to “Mom”, and not Tyson.

It seems like between schools and the professional photography business, there ought to be pre-vetted procedures for these kinds of stupid dilemmas. Some disability accommodations are genuinely difficult. Taking inclusive class photos should be dead easy.

Wednesday, December 10, 2014

ABLE Act Followup: I Guess I'm In ... It's Your Call

The word "Advocacy" being highlighted by a green highlighter pen
I just got an email alert from the Center for Disability Rights, asking people to call their Senators and encourage them to vote “No” on S. 313, which is the Senate version of the ABLE Act. The email provides a good overview of what’s wrong with the ABLE Act at this point:
There are two major problems with this bill:
1. It caps eligibility by age. Only people who have acquired their disability before age 27 would be eligible. There has been no logical explanation for this arbitrary number and the Disability Community does not accept leaving anyone with a disability behind.
2. It includes budget cuts to vital services for people with disabilities. One group of people with disabilities should not have to sacrifice such services in order for another group of people with disabilities to have what they need to survive.  Things that would be cut if this version of the ABLE Act passes include:
Specific oral medication that many dialysis patients with End Stage Renal Disease (ESRD) take would not be covered by Medicaid until 2024.  People will die because of this.
Vacuum Erection Systems (VES) would no longer be covered by Medicare.  This seems trivial, but it is assistive devices such as this that allow some people with disabilities the opportunity to have a family – the same right able-bodied people enjoy.
As I have written about recently, I am upset by the last-minute changes to the bill … both for their practical consequences, and because I think it signals a failure of cross-disability collaboration. That said, I can’t quite bring myself to ask Senators to vote no at this point. If I thought there was a real chance to revisit the changes and fix the bill, I would urge them to vote it down, but especially with two-house Republican majorities on the way I don’t see that happening.

I do hope that Senators who have supported this bill will take a good look at the limitations, and realize that they really are more than just the usual compromise all bills go through before they are passed. The age limitation, especially, fundamentally changes the bill, by cutting out entire portions of the disabled population. I think I would rather have seen the ABLE Act account limits reduced … either to a bit less than $14,000 per year, or to a lower total account limit than $100,000 per person.

So, go ahead and pass the ABLE Act. See how the model works. Make the case for expanding it to the whole disability community. Build on it, or adjust as needed to make it better. But let’s not let Congress and the media celebrate this “rare example of bipartisanship” without acknowledging how it got done. And, next time a bill like this comes up, let’s all make it clear that we won’t accept “divide and conquer” anymore, or be talked into throwing disabled people a bit different form us under the bus.

If you want to contact your Senators anyway, click here to get started.

Things We Say About Disability

We are fine. Yes, we have disabilities, but that makes no difference to our capabilities. Just give us a chance, treat us like everyone else, and we will succeed.

We could be fine, if we had a few basic supports in place, but because of bureaucratic stupidity, the persistence of bad, outdated policies, and general public apathy, we are still denied access to proven services we already know would work for us.

We would be fine, but we are battered and bruised every day by the terrible beliefs, insensitivity, and severely misguided practices of the people around us. Even our families and closest friends sometimes don’t really “get” us.

Listen, sometimes we aren’t fine at all. We hurt. We feel sick. We feel worthless. Some days we can barely get out of bed, and we never know ahead of time when those days will be. When we are at our best, we can do a lot, but frankly, we’re very rarely at our best. Not enough people understand that.

The trouble is, they are all true.

Tuesday, December 9, 2014

The Best Stella Young Tribute


I have been really impressed with how the ABC (Australian Broadcasting Corporation) and other bloggers and news outlets have written about Stella Young after her unexpected death. I have seen barely a whiff of either “inspiration porn” or morbid fascination with the details of her disability. The ABC’s articles were loving and respectful.

Still, Benjamin Law’s article is by far the best tribute I’ve read so far.

Notes On A Vox Article

Andrea Louise Campbell, Vox - December 9, 2014

It is important to highlight really informative articles on disability that appear in mainstream publications. The general public knows very little about what life with a disability actually entails. Unfortunately, most stories about disability in newspapers, magazines, and news programs focus on individuals and emotion, at the expense of information on broader policy and how it works … and fails … for disabled people across the board.

This Vox.com article is very informative and as far as I can tell, accurate. More importantly, it provides a very good explanation of the income “trap” that so many disabled people find themselves in, because essential supports are part of income-tested programs for the “poor”.

A few thoughts on the article:

- The article is excerpted from the author’s book. It mentions the Affordable Care Act, which suggests that it is fairly recent.

- I was surprised to see no reference to the ABLE Act, a bill very likely to be passed and signed into law in the next few days that would provide at least a partial way around the asset limits described in the article. Unfortunately, recent amendments to the bill might leave the article’s subject, Marcella, out entirely, if she was over 26 years old at the time of her accident. (The article doesn't mention her age, but suggests she was a young adult). If nothing else, the amendment is a good example of how the “social safety net” grew in such a piecemeal way … with lots of arbitrary limits and loopholes added simply to reduce cost.

- Ms. Campbell takes extra care to explain how income and asset “tests” reward low income rather than high. She implies that most sensible laypersons will find this counter-intuitive and strange. It certainly is maddening, but I don’t see why it’s so surprising. Almost all social assistance in the United States is based on economic need, rather than neutral characteristics like disability alone. It’s the way most American voters think they want it … help for people who need help, not for people who don’t. If you make more money, you need less help. That’s the idea anyway.

- Personally, I would prefer a lot less means-testing, even if that meant relatively well-off disabled people getting help, especially for supports almost nobody can afford, like home care and assistive technology. Barring that, though, I think the system could be made fairer and more humane just by revisiting where all the income and asset limits are set, and comparing them to current cost of living in various regions. We don’t necessarily need to overturn the whole system. Making in more economically functional for individuals and families would go a long way.

Sunday, December 7, 2014

Another Teacher Lost

Stella Young has died, unexpectedly, at the age of 32. I am shattered. So are a hell of a lot of other disability folk on the Internet.

In a fairly recent TED Talk, Stella pushed back against disabled people being called “inspirational”. A few commenters here and there had the audacity to say that her TED Talk was inspirational. Honestly, I get where they were coming from, but really, Stella wasn’t “inspirational”. She was “fucking amazing”. There’s a difference.

To me, Stella was another teacher. Mostly through her writing, she taught me to really believe rhetoric that I had previously just recited, about disabled bodies … disabled people ... being beautiful.

Weekly Wrap-Up

Illustration of a weekly calendar with a red pin
Sunday, November 30, 2014
Monday, December 1, 2014
Tuesday, December 2, 2014
Wednesday, December 3, 2014
Thursday, December 4, 2014
Friday, December 5, 2014
Saturday, December 6, 2014

Saturday, December 6, 2014

Learning Humility

When things like the grand jury decisions in Ferguson and Staten Island happen, I have a thousand thoughts and feelings, and dozens of unique and valuable insights that I’m sure are indespensible, for upwards of 20 minutes or even more! That’s plenty of time to gas on about them on Twitter or Facebook, and cringe about later.

So, I’ve been fretting a bit, (boo hoo, poor me), about how to respond to social justice issues that are not mine, but to which I can tangentially relate in some way. For the most part, I’ve decided to read and absorb, and say little or nothing. When the Staten Island decision came out, I Tweeted a few thoughts about cops and disabled people, but quickly found that they seemed off topic and self-centered.

Then this evening I saw the video below promoted in a Tweet from @NaturentheCity, and I found it really helpful.



I will ask and answer another question that isn’t directly addressed in the video.

What do you do if, as an ally, you disagree with something someone says or does in the movement you are allying yourself to? What if you listen, do your homework, and still find a core concept you don’t really buy into?

My guess is that you should 1. Consider bowing out and shutting up, or 2. Focus on what you do agree with and let the other stuff go.

The most important thing, I would think, is to realize that your contrary opinion is probably something that the others are fully aware of. They’ve heard it before, almost certainly. And even if they don’t hear about it from you, depriving the group of your particular stellar idea probably won’t do anyone any harm. In other words, as exciting and compelling as your thoughts are to you, in all probability they aren’t that novel or important.

That’s hard for me to digest and practice, but it’s the only way I can think of to remain engaged in things as an ally, without constantly and pointlessly pissing people off. 

Besides, as a disabled person, I’ve experienced this from the other side, too. It’s amazing how many non-disabled people seem to sincerely believe that their idea about what will make our lives better is something we’ve never thought of … whether it’s eating healthier and losing weight, or asking a doctor about that pain for the billionth time, or not being so proud and accepting help, or any number of suggestions we’ve all heard hundreds of times … each and every one a brand new idea someone just has to share with us, or the universe will implode or something.