3 Kinds Of Ableism

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

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.

"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

Sunday, March 23, 2014

• A Cold War Heats Up

Monday, March 24, 2014

• The New 7% Hiring Goal
• Albany ADAPT Protest Update
• Exclusion
• Photo Of The Day

Tuesday, March 25, 2014

• Blogging The Protest
• "We've been dicking around too long!”
• “Shared Abilities” Blog Post

Wednesday, March 26, 2014

• A Ventilator In A Fraternity House
• Victory In New York State!
• Yes, I’m A Killjoy

Thursday, March 27, 2014

• Let Down By “Girls”
• Photo Of The Day
• “Girls” Addendum

Friday, March 28, 2014

• Friday Favorites
• Photo Of The Day

Saturday, March 29, 2014

• Disabled People Are Confusing

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.

Photo Of The Day

From the Random-Expressions Tumblr blog, via The Perks Of Being Disabled.

Friday Favorites

She Types Things

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.

The Squeaky Wheelchair

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.

Disability Horizons

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.

"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

From the Radically Disabled Tumblr blog, via The Lame Dame.

Let Down By "Girls"

(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.

Yes, I'm A Killjoy

This Unique Invention Will Allow Disabled Children to Walk For the First Time

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!

Common sense won over the New York State Nurses Association!

Protesters end week-long occupation of NY nurses union office

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.”

Tweets:

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.