Monday, March 31, 2014

Photo Of The Day

Blonde woman in a manual wheelchair, viewed from the side. She is dressed in a aqua and blue patterned dress that matches decorative patterns on her chair

3 Kinds Of Ableism

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This week I am going to do something different at Disability Thinking.

I have been thinking a lot about disability prejudice, also known as “ableism”. Mainly, I’ve been trying to think more precisely about it, partly because I feel like it is awfully easy to throw the term around, and use it to give a name to everything bad that happens to us when we have disabilities. I also think there is some confusion about the questions of motive or intention. Is ableism all about actions and behavior? Can a person be “ableist” in their character? Can institutions or even a whole society be “ableist?”

Well, yes, yes, and yes. The way I figure it, there are three kinds of ableism:

1. Well-Meaning Ableism

2. Institutional Ableism

3. Asshole Ableism

These aren't official terms, of course. The point is, ableism is a concept in flux, so I think my words are as good as any.

I will explain what I mean over the next three days, starting tomorrow, with the variety of ableism that a lot of people … including a lot of disabled people … think is the only kind of ableism that actually exists. They are wrong, but I can see why the think it, because Well-Meaning Ableism is as common as dirt. More on that tomorrow.

"Shared Abilities" Video Commentary

Shared Abilities logo
I contributed some comments to a TED Talk video posted at Shared Abilities. It is a video I had seen before, but I got more out of it the second time viewing it.

Sunday, March 30, 2014

"Vox" Explains: Obamacare and The Debt

The new Vox news website finally has some content other than its introduction. It has also already sparked some controversy due to some of its new hires … plus the inevitable buzz suggesting that these youngish, nerdy, progressive-ish journalists have sold out in some way. I still think the project is worth following, and that the idea of journalism doing more to “explain” the news is a good one.

Here are a couple if videos that seem to represent what their work will look like. They are also on topics of some interest to people with disabilities. The Obamacare / health insurance connection is obvious. As for “The Debt”, well it’s not really a disability issue per se, but I think it’s important to keep in mind the actual nature of the dreaded federal budget deficit when politicians insist that “there’s just no more money” for anything we want to do.

How Obamacare’s individual mandate works … in two minutes

Stop freaking out about the debt

Weekly Wrap-Up

Disability Thinking Weekly Wrap-Up white bold letters against a sepia toned photo of a row of handicapped parking spaces.
Sunday, March 23, 2014
Monday, March 24, 2014
Tuesday, March 25, 2014
Wednesday, March 26, 2014
Thursday, March 27, 2014
Friday, March 28, 2014
Saturday, March 29, 2014

Saturday, March 29, 2014

Disabled People Are Confusing

It seems like a lot of disability blogs and websites have gotten into the same listing trend that made BuzzFeed famous. If I’m going enter the list game, and it seems like I must, I want to do something different.

I started off by listing one or two-sentence concepts about disability that I think are important to understanding disabled people. One fact seemed to run through all of them. Disabled people are confusing!

Please, don’t get the wrong idea. We’re not inexplicable. It’s not that we don’t make any sense. By and large we aren’t dishonest or inconsistent. From the point of view of non-disabled people, though, (as best I can tell), a lot of the thoughts, feelings, and ideas we disabled people take for granted can appear strange and contradictory to others, including some of our clan who have only recently become disabled.

So, here is my list ...

10 Ways Disabled People Are Confusing

1. Disability isn’t always easy to spot or identify. Some people who have very visible, obvious disabilities may be less impaired than they appear to be, while a lot of people have very significant disabilities that you can’t see at all.

2. Everything is fine, disability is no big deal! Except when it’s terrible. Life with a disability is probably not as bad as you might think, but it’s also probably harder, more tiring, more painful than we tend to let on.

3. Depending on the situation, sometimes we have to persuade people of how capable we are, while other times we have to argue that we are, in fact, disabled. Disbelief is a common reaction to our disabilities, and it can work both ways.

4. We like being praised. Who doesn’t like praise? But we are also suspicious of it. We have heard so much of it that is fake and unearned that we have a hard time accepting it when it is real and deserved.

5. We are proud of fellow disabled people who become famous comedians, actors, athletes, or politicians, but we worry about non-disabled people learning the wrong lessons from their examples. You know, yay for the Paralympians and all, but don’t hold your breath waiting for me to play Sled Hockey, okay?

6. Physically disabled people don’t like being treated as if we are also intellectually disabled, but it’s weird because we know people who actually are intellectually disabled deserve respect, too. It’s like old “Seinfeld” episode: “I’m not gay … Not that there’s anything wrong with that!"

7. Most of us are pretty self-reliant, but at the same time it's upsetting when nobody steps up to help us out when we need it. Here’s a tip … It’s always nice to be offered help; it only becomes annoying when it’s forced on us by people who seem convinced we are helpless.

8. We struggle all the time to figure out the right balance, in the right situation, between being a cheerful doormat and an annoying advocate. All the social rewards go to people who are pleasant no matter what happens. The harder stuff, the stuff we need that makes a real difference, often requires us to be tough and confrontational ... a.k.a., a pain in the ass.

9. Good luck getting us to agree on what we should be called. Some of us like “person with a disability”, others prefer “disabled person”. A few of us still have trouble with any variation on the word “disabled”, but the problem is that all the alternatives words are worse … smarmy (“differently abled”), patronizing (“handicap-able”), or so nonspecific as to be functionally useless (“special needs”). That’s one reason why some of just say “screw it” and opt for “cripple”.

10. We can hold two, three, even four or five vastly different concepts of disability in our minds, simultaneously. Is disability a dread disease, a social identity, a character-building challenge, an embarrassing scar, or an invisibility cloak? Is it part of who we are, or is it something that gets in the way of people seeing who we really are? Is it a natural variation, or an abnormality to be avoided? We’ll have to get back to you on all that ...

Disabled people are confusing sometimes, but that's partly because it is confusing to be disabled. Plus, even if we can't give non-disabled people absolute rules and truths about disability, there is value in knowing what we are conflicted about. Our internal and external conflicts and contradictions say a lot about who we are, and about disability as it is actually lived.

I hope that cleared things up. Your welcome.

Friday, March 28, 2014

Photo Of The Day

Woman in wheelchair hugging a horse, her head rested on horse's head

Friday Favorites

I like this blog, by an Australian disability blogger, because while her general orientation in the disability world is similar to mine, she is also very good at presenting thoughtful arguments for positions I don’t agree with. For instance, she made one of the most persuasive arguments I have ever read for why it might be okay to support both inclusive education and “separate schools”. Often, people who blog their “contrary” opinions do so in a deliberate attempt to be provocative, to be mavericks. “She Types Things” really believes what she says she believes, so her arguments are strong, but not aggressive or smug.

This is simply a very well-written blog that I have just recently started reading. I added it to my Disability Blogs list after reading a beautiful piece on CP Awareness Day. It made me think in a new way about some of my own disability-related quirks. Anyone who can show me an unfamiliar perspective on disability is someone I’m going to follow.

This is as close to the kind of disability website I would like to create as I have ever seen up and running. It looks great. It is updated often. It covers a wide range of disability issues and perspectives. It’s run by a small but diverse team. Its overall tone is more or less in line with my thinking about disability. It combines personal blog-type articles with more objective news and feature stories. It has an easy to locate and explicitly defined mission, so there’s no sense of mystery about what the site is actually about. And its execution and scale seem to be in line with its ambitions. In other words, the Disability Horizons team seems to have set a reasonable goal and they are achieving it. I have seen several other “full featured” disability websites, (as distinct from more narrow, personal blogs), and too many of them either fall well short of too-ambitious goals, or are a little confusing, because they seem like they are semi-secretly affiliated with some vague sort of business venture that may or may not match up with the website’s topic and tone. The only slight drawback is that Disability Horizons is based in the United Kingdom, and is generally oriented to British disability issues. Still, that’s good I suppose, since it means there’s still room for something like this here in the US.

Thursday, March 27, 2014

"Girls" Addendum

(This is a followup of a post from earlier today Let Down By "Girls")

I've come up with a way to undo the damage of the "Girls" end of season disabled character story debacle.

Once Beadie recovers, and Jessa is tidying things up and talking to her a mile a minute, as she is wont to do, she mentions something about Beadie considering suicide because of her disability. Beadie interrupts saying, "What?! I didn't want to die because I use a fucking wheelchair! I've been using a wheelchair for three decades! No, I wanted to die because I'm depressed, and my photos have sucked for the last five years!"

Jessa says, "But, I thought ..."

Beadie, interrupts. "Jessa, honey, you've watched too many Lifetime Movies. Disability is the least of my fucking problems."

From there, Jessa becomes Beadie's aide for awhile, picking up a shit-ton of grown-up wisdom while she helps Beadie with the logistics of her photo shoots, which, incidentally, start to go a bit better because even Jessa knows a thing or two about art.

Boom. Stereotype acknowledged and busted. Meta-commentary made. Bold statement about life with a disability delivered.

There you go Lena Dunham ... a nice story thread for Season 4. I'll take my $100,000 now please.

Photo Of The Day

Young white woman sitting in a wheelchair taking a selfie with a smartphone, wearing a white frock dress and light pink hat
From the Radically Disabled Tumblr blog, via The Lame Dame.

Let Down By "Girls"

Promotional poster for "Girls" TV show
(Beware ... spoilers ahead)

I guess I should get in line, because pretty much every discernible social group in the country has been let down by Lena Dunham's "Girls" at one time or another. I just caught up on the last two episodes of Season 3, and at first the wheelchair-using guest character of "Beadie" excited me, then utterly crushed me.

Obviously, Girls isn't about pleasing or representing constituencies, and I respect that. And I really like the show. However, I have to say that making your first physically disabled character an older woman in a generic hospital wheelchair who wants Jessa to get her drugs so she can kill herself ... this is very disheartening to watch as a disabled person.

Listen, there are physically disabled people who wish to end their lives. Some of them have to try to get others to help them do it. And there is a whole libertarian argument that this should be legal and accommodated.

At the same time, there is a strong counter-argument ... one that has nothing to do with religion or a "right to life" point of view ... that the reason some disabled people wish for death is usually a completely unnecessary lack of support on many fronts. To many of us, it is a truly bitter irony that in general, people are more aware of the terms of debate on assisted suicide, than they are about assistive technology, accessible buildings, and home care ... all of which can make life dramatically more livable for people with even the most severe disabilities.

Set all that aside, though, and you still have a character in Beadie who we are supposed to believe is at the end of her rope. Her body is "gone" and she's in horrible pain, justifying her desire to die and placing a kind of moral obligation on Jessa to help her do it. Yet, other than being in the wheelchair, we see no evidence of how horrible her life is, at all. She looks pretty healthy. She's got reasonable use of her hands ... though inexplicably she needs people to push her wheelchair. She is a talented photographer, who probably has enough money to support herself and hire aides to assist her. She certainly ought to be able to buy a wheelchair that she, herself can operate, instead of that clunky hospital chair they probably found in prop storage at the last minute. She's got a strong will and a sense of humor, so even if she's more impaired than she appears to be, there's a good chance for her to have a rich "life of the mind".

A reasonable explanation that would invalidate all of this would simply be that she's clinically depressed ... mentally ill basically. Which means she needs treatment and therapy, not an overdose. It would be interesting if Jessa, of all people, would have suggested that to Beadie, instead of wrestling over whether or not to buy her drugs. After the year she's had, Jessa would actually have been kind of perfect to deliver a bit of an intervention to Beadie. But suicide is cooler, more "edgy" I guess than earned, realistic character development.

I get that the point here was to provide a revealing situation for Jessa, not to make a social point about disabled people. But still, you can't just make shit up! It has to ring true. And this rang very false, even though the character was generally well played by Louise Lasser (who, incidentally, played the title character in the cult comedy TV show Mary Hartman, Mary Hartman). I would have totally bought a kind of mentor / Man Friday relationship developing between Beadie and Jessa, with Jessa becoming Beadie's assistant, helping her function more effectively in the art world than maybe she's able to on her own, without help. Maybe that's what they have in mind for the next season. After all, the suicide story took a slightly more hopeful turn at the end.

An even simpler question is, how can Lena Dunham ... who I really do think is a brilliant and fairly aware writer and director ... how can she have been unaware of how much of an overused TV trope this storyline is? Ten minutes of research into what interesting, "creative type" disabled people really think about things would have yielded a dozen better ideas than this one.

I think the answer is that for some reason, disability is still not part of the default knowledge base of your standard-brand liberal / socially aware American. In the absence of any meaningful engagement in disability as a social issue and identity, otherwise socially conscious people simply fall back on a few rudimentary ideas they maybe picked up from "old timey" pop culture ... because "old timey" is hip, you feel me? And if you get your disability reference points from decades old culture, they are going to be bad.

Anyway, that's my theory. Yet, I hope that a year from now, "Girls" will do something genuinely fresh and interesting with Beadie and Jessa. Because I really liked Beadie, until she basically said that anyone as disabled as her would of course want to die.

Wednesday, March 26, 2014

Yes, I'm A Killjoy

Elizabeth Plank, PolicyMic - March 26, 2014

It's getting to the point where I think I know a little of what it must be like to be a feminist ... compelled to ask uncomfortable, confrontational questions just when everyone is having a good time.

I had a strongly emotional reaction to this story, which has been making the rounds of first British, and now American newspapers and websites. But not the kind of emotional reaction one might think. I mean, who can resist that lovely photo, right?

Once I finally read the article, my first reaction was to be very upset. Not just intellectual disagreement upset, but personally upset. It seemed to me that either the article's writer, or the Upsee company, or both, were saying that the great thing about this Upsee invention is the joy it gives the parents to see their disabled kids "walk" and look more normal. This, despite the fact that compared to an operable wheelchair, crutches, or a walker, this device makes the child more dependent for mobility on their parents, not less.

Also, the article itself, when I read it, led with inflammatory language like "bound to a wheelchair," some of which I think have since been removed, though the tone of story is basically the same. Parents are "devastated" by their children being disabled, possibly having to "spend their life in a wheelchair." Then along comes this clever invention that allows their kids to "play like other children." Whether intentional or not, there's a lot of emphasis on how great the parents feel, a little less on the practical use of the Upsee, and nothing at all about how the kids feel about it ... or will feel about it when the novelty wears off and they realize they are still, literally, tied to Mom and Dad.

On further investigation, in particular having a look around the company's website, I do see that the Upsee has two other, more substantial uses. One, it is apparently a good tool for physical therapy, and may lead to permanent physical improvements that can result in greater long-term independent mobility. As a person who might well have "spent my life in a wheelchair," if not for aggressive surgery and physical therapy in childhood, I can't really argue with such a goal or results.

The second benefit I see, though, is barely mentioned ... and that is that the Upsee looks like a very flexible, multi-use mobility device / carrier for very young disabled children. For really little kids it's probably more functional than a wheelchair. It also reminds me of the jury-rigged contraption my parents and a local bike shop "invented" for me when I was very young and had two legs in a cast. I'm all for devices that make it easier for parents to care for very young disabled children, and this Upsee looks like a great example of that.

But back to what upset me initially, and still does. It is the implication that this thing is the answer to a very particular kind of parents' prayer ... "Please let my child be more like other kids." This is a wish I cannot bring myself to oppose, but which really does wound me at the very core of my being. Whenever someone or something seems to confuse real, functional improvement with symbolism and masking of difference, it upsets me.

What worries me, too, is the children who will never be able to walk independently, with or without an Upsee. Will they go through an even longer phase now when they crave the appearance of normalcy over functional mobility? As it is, children and youth with disabilities waste years trying in vain to walk and talk and act "normally", often while letting more practical mobility skills and tools gather dust.

The Upsee looks promising, but there are so many basic questions to be asked, and everyone seems to be too busy cooing over the cute kids and their parents to think of asking.

Like I said, I'm a killjoy.

Victory In New York State!

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Common sense won over the New York State Nurses Association!

Jon Campbell, Politics On The Hudson - March 26, 2014

“ADAPT has raised important and valid concerns about access to care and the ability of all New Yorkers to live independently in their own homes, and we feel that our proposal fully addresses these concerns,” the union wrote in a statement before the end of the sit-in."

"Darling said the group will now return its focus to the state Assembly in an attempt to get them to back the change before the state budget is passed. Cuomo and state lawmakers face a Monday deadline to pass a spending plan for the 2014-15 fiscal year, which begins the next day.”


ADAPTerBruce: Nurses association supports nurse delegation! ADAPT heads to the NYS Assembly!  @NationalADAPT

NationalADAPT: VICTORY: we who believe in FREEDOM will not rest till we have a CHOICE; COMMUNITY CHOICE! #FreeOurPeople

Now for the New York State Assembly ...

A Ventilator In A Fraternity House

A personal perspective on home care, flexibility, and common sense
"CFC requires states to provide assistance with Activities of Daily Living (ADL's), Instrumental Activities of Daily Living (IADL's) and health related tasks (like medication administration, tube feeding, and vent care) to assure that people have the services and supports they need to live in the community."
"Although New York State has a Nurse Practice Act (NPA) exemption for its consumer-directed program, it needs to amend the NPA to allow attendants under a more traditional agency model to provide assistance with health related tasks with training and supervision from a nurse." -- Community First Choice In New York.
I first experienced the weirdness of this kind of well-meaning but blinkered medical rule when I started using a ventilator at night in the late 1980s, at the same time I started college, exactly the same time.

When I first got my tracheostomy and ventilator in August, 1985, I was in the hospital of course, since trachs require surgery. For as long as I was there, at that hospital, at that time, I had to be in the Intensive Care Unit. Not because I needed that level of care … within days of starting to use the ventilator I was back to almost normal health … but because non-ICU nurses weren’t “qualified” to even touch a ventilator. So, there was the odd spectacle of me attending my first week of college classes by leaving ICU in the morning, going to classes, and coming back to the ICU at night.

That lasted a week, and might have lasted a lot longer, but luckily I was able to move instead into the college infirmary. The college's medical director ran the facility, and had the authority to look at my situations and needs, and agree that I could handle my own ventilator, with help from the infirmary staff, if needed. 

This was still not quite “independent living”, but it was pretty close. I stayed there for a full semester, still going to classes. Actually, it was a great way for me to learn all about the ventilator and tracheostomy care, in a partially medicalized setting where there was competent backup. Mind you, it wasn’t “qualified” like the ICU staff, but they were clever enough to assist me in operating the ventilator, should I occasionally need assistance.

Next semester, I moved into a regular dorm room. There were other students throughout the building, but essentially I was living alone, with my ventilator which I used every night. I didn't have any daily assistance of any kind, nursing or otherwise. I had support of the ventilator company, which made Respiratory Therapist visits every month or so, and supplied me with replacement components, taught me how to clean what needed cleaning, etc. It all worked fine.

In my Sophomore year, I moved into the fraternity house I had joined, and as far as I know, nobody had a coronary or gave a stern lecture about how irregular and unhealthy it all was. This was only a year after the majority of hospital staff had been deemed unqualified to so much as turn the ventilator on. Yet, I lived in that fraternity house until I graduated. Granted, the house had a reputation for being the opposite of the Delta House of “Animal House”, but still. The contradiction was not lost on me.

The key was that I had the physical ability to operate the machine. If I had needed someone else to do so at my direction, I don’t know what would have happened. Given the setting, it would have been an obvious thought to hire a fellow student to help, but would that have been allowed? And if not, why not? If I had the mental ability to take care of my own ventilator, why wouldn’t I have the mental ability direct someone else to do it for me?

As it was, it all might have collapsed anyway if not for key decision-makers being flexible and willing to think "outside the box." Should they have stood fast? Did bending, then changing the rules rob nurses of their proper purview? Did allowing a rank amateur (me) to take care of myself ruin my health? Would I be healthier now if I had a nurse visiting me every day, twice a day, to hand me a breathing tube and push the on button on my ventilator? Such nurses would be paid, of course, but would it be a good use of their time and training?

It took flexibility and a willingness to go with common sense, not the jealous guarding of professional turf or terror of liability, that enabled me to live a fully integrated life ... the kind of life ADAPT is fighting for now.

Tuesday, March 25, 2014

"Shared Abilities" Blog Post

Shared Abilities - March 25, 2014

My most recent blog post at Shared Abilities is up and ready to read. It’s about the 25th Anniversary of the Gallaudet University protests that resulted in the appointment of the first Deaf President of the nation’s premier University for the Deaf, and how it changed how I viewed my own disability.

"We've been dicking around too long!"

Look, I’m not going to reblog every new post about the ADAPT protest in Albany, NY. If you are reading this you can follow events as easily as I can on the Community First Choice In New York blog. But I just had to post this YouTube video of the protesters, who are escalating their occupation of the New York State Nurses Association.

The man who says, “We want them to move the Assembly now. We’ve been dicking around too long!” is Bruce Darling, Executive Director of the Center for Disability Rights in Rochester, and someone I knew when I was an ILC director in New York State. This brings back memories, though none quite like this!

By the way, Bruce was probably speaking off the cuff, but “We’ve been dicking around too long!” could be the new official slogan of the disability rights movement.

Blogging The Protest

The protest in Albany continues, and now they have a blog, linked above. Given how easy it is to set up a free blog, I’m amazed more protests don’t do this. Twitter seems like the best way to update people as events unfold, but you can’t have detailed policy discussions or manifestos in 160 characters or less. Blog entries can be as long as you want, the print can come from anywhere, and adding photos is dead easy.

This is just really cool.

Monday, March 24, 2014

Photo Of The Day

African-American man in full body armor sitting in a wheelchair
From the Howlingblaster Tumblr blog, via Thalensis.


Stella Young, ABC Radio “Ramp Up” - March 24, 2014

This is another brilliant and emotionally resonant article by Stella Young, a radio journalist at the Australian Broadcasting Corporation. She describes the dual pain of exclusion caused by inaccessible places. We are robbed of the experience that is inaccessible, and at the same time, we are placed in a no-win situation where one way or another, a social wedge will be driven once again between ourselves and our non-disabled friends. She also underscores how failing to consider accessibility is much more than just an oversight, more than a minor detail. In the most practical sense, that little bit of thoughtlessness produce a literal exclusion. That it is unintended makes no difference. That is a key to understanding ableism.

Albany ADAPT Protest Update

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My local Center for Independent Living, the North Country Center for Independence, posted an update on their Facebook page, from the Albany, NY ADAPT action at the New York State Nurses Association I wrote about yesterday. I’ll just quote the whole message sent out from the protest:
"The ADAPT activists who have occupied the offices of the New York State Nurses Association appreciate the outpouring of support from the disability community and others across the nation. It has been over 100 hours since members of NYS ADAPT started the occupation of the NYSNA offices because the union opposes amending the Nurse Practice Act to allow attendants to do health related tasks. Throughout the occupation, we have negotiated with the nurses union in good faith to get their support for nurse delegation so people who need assistance with health-related tasks - including medication administration, ventilator care, assistance with catheters, suppositories and feeding tubes - can get that assistance in the community from attendants."
"By allowing advanced home health aides to do health related tasks, New York State will be able to implement the Community First Choice (CFC) Option. This Medicaid State Plan Option would assure that any individual eligible for institutional placement is able to access services and supports to live in the community. Under CFC, NYS would receive additional federal funding and would significantly expand the services and supports for people with disabilities living independently. Additionally, after expanding the availability of services, it is estimated that CFC at full implementation would generate an extra $340 million a year, every year."
"On Wednesday, when we first arrived at NYSNA, there was significant disagreement about the provision of assistance with health related tasks, and we were concerned that NYSNA’s advocacy was focused on preventing people with disabilities from getting assistance with key health related tasks to live independently. We explained that full implementation of the Community First Choice Option means that no person with a disability should be forced into an institution because they cannot get assistance with health related tasks."
"Through our negotiations, we secured a statement from NYSNA supporting the rights of all New Yorkers to be independent in their own homes, and the rights to any and all care needed to maintain that independence. In that same statement, NYSNA said that “To be clear, NYSNA fully supports the implementation of the Community First Choice program.” NYSNA also proposed alternative legislative language amending NYS education law to allow advanced home health aides to do health related tasks. We are now being told that NYSNA’s language creates a contradiction between education law that would authorize nurse delegation and the Nurse Practice Act in health law that precludes this."
"We are not union lobbyists or lawyers; nor are we governmental officials or legislators. We are people with disabilities who want to secure our civil right to live in freedom in the community. We are also activists, and we will hold the union, legislature and our governmental officials accountable."
"We have fought for 24 years to secure the right to live in the community rather than be forced into institutions. We will not wait any longer, so NYS ADAPT is continuing our occupation of the NYSNA offices."
"Because of the legal problems that appear to be created by NYSNA's proposed language, NYS ADAPT demands that NYSNA immediately provide a compelling legal analysis demonstrating that their language does not - in fact - create a contradiction between health and education law. If NYSNA is unable to provide such a compelling legal argument, it must agree to address the contradiction by supporting the addition of a “notwithstanding clause” to their language or support an amendment to the Nurse Practice Act."
"NYS ADAPT further demands that the New York State Assembly Democrats ensure the civil rights of people with disabilities by supporting budget language that authorizes advanced home health aides to do health related tasks, and if necessary, amends the Nurse Practice Act in order to fully implement the Community First Choice Option, end the Medicaid institutional bias, and FREE OUR PEOPLE!"
Some of the folks from the North Country Center for Independence are planning to join the protest for awhile tomorrow. I’m hoping they’ll send some photos and Tweets.

The New 7% Hiring Goal

Lauren Weber, The Wall Street Journal - March 18, 2014

There is hardly a word in the national press about the new U.S. Labor Department rules going into effect today, requiring companies with federal contracts to aim for 7% of their employees having disabilities, and 8% being veterans. I have seen some stories in random local outlets, but the The Wall Street Journal seems to be the only major news organization taking any time at all to cover this. At first that concerned me, because The Wall Street Journal is fairly conservative and has a pro-business outlook. However, I think that actually helps in this case because while the tone of the article isn’t what I’d call hostile, it does raise some sensible questions. For instance:

- Employers will need to ask all of their employees whether they have a disability, so they can be counted toward the 7% goal. Will that conflict with the Americans with Disabilities Act, which prohibits employers from digging for details on employees disabilities, and protects employees’ right to not disclose disabilities? It seems like it will be fine for employees to ask, in a general way, if employees have a disability, and the employees won’t be obligated to answer. And “answering” seems to amount to nothing more than Yes or No, no details required. Still, it may take quite awhile for everyone to get comfortable with the question itself, and the idea of counting the number of employees with disabilities at all.

- Some employees who actually do have qualifying disabilities might not think of themselves as "disabled", and won't be counted. This is one of those instances when the lack of consensus about what "disability" is, and what terms are preferred, actually could get in the way of a valuable policy.

- 7% sounds like a high goal, but that's only 3-4 people in workplace of 50 employees. The WSJ article speculates that many companies may already be in compliance, and I tend to agree. That's fine, but since the new goal is supposed to increase employment of people with disabilities, maybe the goal is too modest.

Of course even on paper, this is just a goal, not a requirement or quota. From one point of view, this suggests that the new rules are purely symbolic, possibly a futile gesture.

On the other hand, I think this is one of those rare cases when "awareness" is more than just a platitude. If nothing else, the new rules will make both employers and employees a bit more aware of various aspects of disability and employment. Hopefully it will also produce enough data to figure out whether 7% is reasonable employment goal, or if it's too high or too low. Accurate statistics across all qualifying businesses might also help distinguish between those that really are open to workers with disabilities, and those that might try to parlay a few "heartwarming" hires into some kind of Good Samaratin image.

The rules may also give disabled people looking for work a different feeling about their disabilities. At whatever point during the application process they feel comfortable, they can mention their disability as a potential positive, not something to explain away or minimize.

Sunday, March 23, 2014

A Cold War Heats Up

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Jordan Carleo-Evangelist, Albany Times-Union - March 23, 2014

This Times-Union article does a very good job of explaining the fairly technical, obscure, but extremely important reason why 14 disability activists are camped out this weekend at the offices of the New York State Nurses Association:
"The group took over the union's lobby Wednesday to protest NYSNA's opposition to an amendment to the Nurse Practice Act that would allow a new category of workers, advanced home health aides, to perform some jobs currently restricted to nurses.
Expanding responsibility for those jobs — like administering medicine and assisting clients with ventilators — would make it easier for those in need of those services to continue to live in their homes rather than being prematurely forced into skilled nursing facilities, the occupiers argue.”
There’s also this ...

The nurses are protecting their own profession. If less-trained, lower-paid aides start being allowed to do medical-ish tasks, it threatens the job market for nurses. It’s the same with doctors and nurses. Nurses often argue, with good reason, that a lot of things doctors do for a higher price can be done just as well by Nurse Practitioners, for comparatively less. But doctors tend to resist that, in part because they are protecting their own market. Some nurses may actually believe that only they can help disabled people take pills and operate ventilators safely, but I suspect what they really care about is the prospect of a “race to the bottom”, with all kinds of medical institutions relying more on lower-skilled people they can pay lower wages. That is definitely not an irrational concern.

As for disabled people who need daily assistance, it’s not that they hate nurses, or want them to have fewer jobs and lower pay. Most really smart home care users understand that all sorts of home care providers should probably be better paid overall. The problem is that the more of our daily care has to be done by top-level professionals, the less likely we are to get that care in a way that enables us to live freely and independently.

Then there is this.

I use a ventilator at night. No rules or regulations prevent me from living alone and operating the ventilator for myself, even though I’m not a nurse. I’m just me, and years ago a Respiratory Therapist showed me how to run the machine I rent from his company. He visits me once a quarter to make sure everything is working okay, but other than that, I’m on my own.

The key difference is that I am physically able to operate the machine myself. At issue here are people who are just as smart as me, but can not, literally, push the buttons, turn the knobs, and attach and detach the breathing tubes for themselves. Their physical disabilities prevent them from operating the machine themselves. They need someone to be their arms and hands … under their direction. The same goes for medications. I can take my own meds. If I couldn’t physically open the bottles, pour a glass of water, and pop the pills in my mouth, I’d need someone to do these things for me. But, I would be responsible for which pills to take when, not the person fetching my water.

The nurses association is saying that in these cases, the people helping us have to be nurses, who are at the higher end of the training and pay scale, not “lower level” home care aides. Part of the rationale for this, I suspect, is the idea that it takes more than simple, direct instruction to handle a ventilator or administer medications. They would perhaps say that it takes general medical knowledge and professional judgment. Nurses are not just servants, doing our bidding. They are managers, who run our care according to the rules and procedures of their profession, and improvising as needed with their professional level of judgement. That's pretty great if you have the flu or pneumonia, or are recovering from surgery, but for everyday routine personal care, turning a machine on and off, or handing you a pill, a nurse is more than you really need.

That is the real difference between the disabled protesters and the nurse’s association. Disabled people just want help to do things they would be doing for themselves, if not for their impairments. Doctors and nurses are geared to delivering and supervising total care for profoundly sick patients. These two things look the same, and include many of the same tasks, but the relationships are very different.

I hope that this protest ends in success. More than that, I hope everyone involved finds a way to defuse what could amount to a zero-sum Cold War between disabled users of home care, and professional nurses. Both have important interests to guard. It would be nice if they found a way to do it without penalizing or scapegoating each other.


This is a good opportunity, also, to once again praise ADAPT's political skills. This all started earlier in the week with angry Tweets and behind the scenes advocacy with New York State Assemblymember Deborah Glick, a liberal Democrat, who to many peoples' surprise, blocked what looked like easy passage of the Nurse Practices Act changes this is all about. Later in the week, ADAPT pivoted its efforts when, I presume, they found that Glick was doing this to support the NYS Nurses Association. In political terns, it looks like Assemblymember Glick chose a very established, known-quantity liberal constituency ... a nurses union ... over a chronically misunderstood, overlooked, and mishandled component of the progressive coalition ... the disability community. I think ADAPT was right to shift it's focus to the nurses. However, I hope Assemblymember Glick and other progressive lawmakers get the message too, that they have a lot to learn about the disability community, and about the implications of our vital interests.

Addendum #2:

Steve Flamisch, WNYT News Channel 13 - March 23, 2014

Another good article on the ADAPT protest. The key quote:
“ … the union has no desire to force anyone into a nursing home or other institution.”
That is a pretty standard spokesperson statement. It is also probably true. Yet, it also suggests a very common type of misunderstanding in the realm of disability rights and disability policy. Policies damaging to the the lives of people with disabilities are almost never intentionally harmful. Few except for extreme medical traditionalists actually want more disabled people in nursing homes. The problem is that policies intended to do one good thing  like ensure higher quality care … often end up also knocking over a different set of dominoes entirely … such as making home care impossible to pay for, thereby forcing people into nursing homes. In this case, as in so many others, it takes disabled people themselves to notice the unintended consequences of policies designed by people who, frankly, only have a rudimentary understanding of our lives.

Weekly Wrap-Up

Disability Thinking Weekly Wrap-Up white bold letters against a sepia toned photo of a row of handicapped parking spaces.
Sunday, March 16, 2014
Monday, March 17, 2014
Tuesday, March 18, 2014
Wednesday, March 19, 2014
Thursday, March 20, 2014
Friday, March 21, 2014
Saturday, March 22, 2014

Saturday, March 22, 2014

Photo Of The Day

Vintage black and white photo of a girl with two prosthetic legs standing for a portrait.
From The Perks Of Being Disabled Tumblr blog.

Best Explanation Of Autism

Nick Walker, Neurocosmopolitanism - March 1, 2014

Since I am neither autistic myself, nor educated on all of the various views and facts about autism, I call this the “Best” only in the sense that Walker’s piece is the explanation of autism that is the most consistent with my general sense of what autism might be, and which I believe helps to answer some of the lingering questions I have about autism … questions that I rarely see addressed by advocates of the “neurodiversity” movement. Above all, it goes a long way towards answering one question:

What do autistic people experience that is different from non-autistics?

Walker writes:
“ … the central distinction is that autistic brains are characterized by particularly high levels of synaptic connectivity and responsiveness. This tends to make the autistic individual’s subjective experience more intense and chaotic than that of non-autistic individuals: on both the sensorimotor and cognitive levels, the autistic mind tends to register more information, and the impact of each bit of information tends to be both stronger and less predictable.”
Of course, I can't say from experience whether this is correct. However, it is a direct, coherent, grounded answer to the question, and it sounds like a very plausible explanation for the various things that autistic people do that are different from what most non-autistic people do. Autistic “behavior” is a rational response to a significantly different sensory experience. That is far less sinister and mysterious-sounding thing how autism is described by even well-meaning autism “experts”. It also suggests that autism really is like other disabilities, which involve doing things differently in order to adapt to different physical or mental input or settings. When you are disabled, it is irrational and maladjusted to NOT do things differently. It seems like the same can be said of autism.

Do read the whole explanation. I have yet to see a better one.

Simpler Than It Sounds

For all its hyperbole and occasional descents into doctrinal nit-picking, Tumblr still has some of the deepest, most interesting disability discussions on the Internet. However, there still seems to be a lot of unnecessary anxiety and trolling around the word “Ableism” and its variants, like “Ableist”. Nobody appointed me King of Terminology, but I do think that this is one of those rare “issues” that really is less complicated than people make it out to be.

1. “Ableism” is simply a more efficient word for disability prejudice, no more, no less. The word is somewhat new, but the phenomenon it describes is not. As far as I know, it wasn’t invented on Tumblr, or in the Disability Studies Department of a major university. It is a perfectly simple and common-sense word that likens disability prejudice to racism or sexism, the types of prejudice experienced by people of various races or genders.

2. The most important thing about ableism is not that it hurts our feelings, it’s that ableism leads to harmful policies that affect disabled peoples’ ability to live fully and independently … even, in some cases, our ability to live, period. Ableism can certainly be annoying, insulting, or even degrading, but these feelings are only the tip of the iceberg. Ableism would still be a problem if we all had some ideal degree of “thick skin” and perfect rationality.

Friday, March 21, 2014

Coming Attractions

Just a reminder that we are a little over two weeks from the return of Game Of Thrones, a show with more disabled characters than any other show on television. That’s not the main reason to watch Game Of Thrones, but it is a definite bonus if you are interested in seeing characters with disabilities.

[slight spoilers ahead]
  • Tyrion Lannister is a Little Person.
  • His brother, Jaimie Lannister is an Arm Amputee.
  • Bran Stark is a Paraplegic.
  • Hodor is Cognitively Impaired, with limited speech.
  • Both Sandor Clegane (“The Hound”) and Shireen Baratheon have severe facial disfigurements which do stigmatize them.
  • Maester Aemon is blind.
I don’t think I’m forgetting anyone, but I wouldn’t be surprise if someone reminded me of others.

By the way, I know she’s not talking about disability issues, but I absolutely loved the bit in this trailer where Daenerys Targaryen and Ser Barristan Selmy have this exchange:
Ser Barristan: “Sometimes, it is better to answer injustice with mercy.”
Daenerys: “I will answer injustice with justice!”
I’m not sure why that struck me so powerfully ...

Best Disability Etiquette Advice

Real Social Skills - March 18, 2014
Via The Lame Dame.

The title of this linked Tumblr piece really should be something like, “A More Useful Disability Etiquette”. The problem is that it came in the middle of a conversation about the social pressure on disabled people to keep things that bother us to ourselves … to “protect” non-disabled people we meet socially from having to know about the physical barriers and ableism we face every day. Someone had then said that he or she didn’t want to be shielded, but wanted to make real, respectful connections with disabled people, and how should they do that?

The list of suggestions from the Real Social Skills blogger is the answer to that question.

There is a complete disability etiquette seminar in there, and much better than the usual boilerplate, obvious stuff that usually passes for disability etiquette / awareness content. I wonder if anyone has ever done a comprehensive study of “disability awareness” content. I have felt for a long time that disability awareness guides, curricula, and exercises need to be overhauled, but have never figured out how or exactly why. This list seems to me like a great start, in part because it addresses what people really want to know … what really makes them anxious: How do I talk to a disabled person without putting my foot in my mouth?

I would only add one item the list:

Just as a surprising change of pace, if you want to connect with a disabled person, instead of asking about their disability, which can often be intrusive, ask them whether they experience barriers or discrimination. For most disabled people, the subject of our actual disability and how we become disabled is boring old news. What continues to engage us every day are the barriers and discrimination we face, and talking about them is kind of taboo on us, as noted above, because we don’t want to be seen as whiners. Inviting us to vent can be most welcomed, and at the same time will give you a glimpse into what life with a disability is like.

Be prepared to listen though, not argue. Don’t invite the conversation only so you can engage in some kind of “devils advocate” debate, or to expound your theory that accessibility is a waste of money, or that there are too many handicapped parking spaces. “Reasoned debate” is incredibly valuable on these topics, but there is a difference between discussions designed to hash out truths, and sharing to increase understanding and intimacy.


I just noticed that Real Social Skills posted my original Tumblr reply, which incorporates some of what I have said here. I suggest just going to the Real Social Skills blog and browsing all of the responses on this thread. They contain a lot more good suggestions from others.

Friday Favorites

Love That Max is the first "Special Needs Blog" focused on parents of kids with disabilities I really liked. During the week, the blogger, Ellen Seidman, generally does one post per day about her son Max, an 11 year old boy with Cerebral Palsy. Her posts are personal, funny, and refreshingly light. Even when she talks about difficult, painful, or weighty situations, she does so mostly without drama and extra layers of significance. She never sentimentalizes Max, which I like to think is an example to other parents. I can read pretty much anything Ellen writes without feeling weird as an adult with disabilities who used to be a disabled child ... something I can't say with a lot of other parent bloggers. Honestly though, the best thing about Love That Max is the "Weekend Blogger Link-Ups". Every weekend, guests can post links to any blog posts or web pages they want. This results in collections of disability-related blog posts, articles, videos, and the like. Most of them are parent-centered, but a good few are always on a broader array of disability topics. I post there pretty much every week, and some of my most interesting comments have been left by parents who read Love That Max. The Weekend Link-Ups make Love That Max a richer, more diverse blog, and a great place to visit if you have any interest in disability issues ... whether you are a parent or a person with a disability.

I can’t deny the nostalgia appeal of this blog, which is by a young woman with Cerebral Palsy who has just started college away from home. Nostalgia isn’t always pleasant, and the blogger here has ups and downs. What I find particularly striking is reading about her reactions to situations that at first seem pretty simple and not so terrible to me, but then remembering how I would have felt about them when I was 20 or so. Not that she’s fragile. The flip side is that she occasionally goes through trials that would crush me even today, and while they clearly affect her, I can sense that in some regards, giving up is not only an option for her, it’s not even something that occurs to her. This is what I think non-disabled people praise as “bravery” or “perseverance”. I suppose technically it is, we disabled people don’t shrink from those praises just to be humble. We tend to think it’s inaccurate to call us “brave” when we literally did not perceive any alternative. “Stubbornness” and “denial” might be more accurate, and they aren’t always insults. These qualities can work for us in the long run, as I think they do for the Transcending CP blogger. In any case, it’s fun to follow her progress.

If you have ever complained about the lack of visibly disabled people on television, but haven’t watched “My Gimpy Life”, what’s wrong with you? Okay, so it isn’t technically a TV show … it’s a web series. But, the 9 episodes so far of this comedy series created by and starring wheelchair using actress Teal Sherer do I think provide a sort of prototype or preliminary sketch for what truly satirical, edgy, risk-taking comedy show about disabled characters might look like. I emphasize the satire, edginess, and risk-taking only to differentiate from disabled characters in a more traditional, broad-appeal sitcom, like “The Michael J. Fox Show”. I have nothing against “safe” sitcoms, but since they are an endangered species, I don’t think they make good shovels for breaking new ground in disability-themed popular culture. It is way too tempting in a series that relies on the tried-and-true to depict disability according to old, moldy narratives. “My Gimpy Life” is a bit rough, but it demonstrates that there are hundreds of legitimate disability-based story and character ideas just waiting to be employed. My favorite aspect of the show is the friend / rival relationship between Teal the wheelchair user and “Teal Too”, the little person … both aspiring actresses who subtly struggle with the fact that with disabled character parts extremely rare in Hollywood as it is, two young, blonde, disabled women named Teal can’t avoid competing with each other. I also love Teal’s roommate, introduced in the Second Season. He isn’t disabled, and his comedy has nothing to do with disability, which proves a disability show doesn’t have to be 100% about disability. If you haven’t seen “My Gimpy Life”, just go watch it. If you have seen it already, go watch it again. It won’t take you long.