Independence Checklist

Many years ago, I attended a disability conference where a speaker described a sort of checklist people with disabilities can use to figure out whether they are truly “independent”. The idea was that there are many disability service and support models that include certain “freedoms” and “choices” that feel like independence, but which can easily mask a fundamentally dependent situation. The speaker asserted that his checklist were indicators of genuine independence, not just superficial “privileges”. I can’t remember who the speaker was, or recall every item on his list.

The checklist that follows is my attempt to re-create and expand on the idea. Are you “living independently"?

- Do you have a lock for the door to the place you live, where only you or someone you choose have the key? Do people have to knock and ask permission to visit you?

- Are you responsible for your own finances, regardless of where the money comes from?

- Do you own your eating utensils, towels and washcloths, bedsheets and pillowcases?

- If you live with another person or people, are they people you chose to live with, and who chose to live with you?

- Do your helpers mostly work around your schedule, or are your routines mostly determined by your helpers’ schedules?

- If you did several things people disapproved of, would you risk losing services you need?

- Would you be permitted to eat Oreo cookies for dinner, if you wanted to? (I call this The Seinfeld Condition … after one of comedian Jerry Seinfeld’s famous bits).

- Would you be able to make a spur-of-the-moment trip to a local convenience store, if you got a sudden, intense, 3 AM craving for Beef Jerky?

- If you and another consenting adult wanted to have sex or get married, could you do so?

- Do you have more or less the same rights and responsibilities as non-disabled people your age?

- If some of your rights and responsibilities are controlled by other people, is that by your choice?

Notice that none of these items are about where you live, whether you have money and from where, whether or not you need or have everyday self-care help from others, or how physically or mentally capable you are. A quadriplegic can live independently. So, to some extent, can someone with significant intellectual disability. And, someone with fairly mild disabilities can just as easily live very dependently, their lives largely controlled and regulated by others.

What other items would you include on your “Independent Living Checklist”?

Music For A Travel Day

I’m on the road today, so no posting, except for this, one of may all-time favorite songs, by Jonathan Richman and The Modern Lovers.

Lexicon

Here is my first attempt at writing some definitions for my Disability Lexicon. They're not funny, and I'm not sure it's going to be feasible to make all the definitions funny. I may just settle for accurate and clear. Please comment, suggest different interpretations, or better yet, offer your own, alternative definitions!

Eventually, I want to put all these definitions into a Wiki.

Differently-Abled

One of several alternative terms for “disability”, consciously coined to replace the perceived negativity of “disabled”, and assert the idea that “disabilities” are only differences, not necessarily disadvantages.

The term received mixed reviews among disabled people, and is rejected by most disability rights activists and participants in disability culture.

Some view this term and terms similar to it as patronizing. Others say it fails to acknowledge the real personal and social hardships of disabilities. It is generally intended to express a more progressive, respectful view of disabled people. Yet, it is possible that “differently-abled” was made up not by disabled people themselves, but by non-disabled progressives and academics who knew little about real-life disability experience. [See also: physically challenged, disABLED, special needs].

Ableism / Disableism

“Ableism” is a broad term for any form of disability-related prejudice. “Disableism” is an equivalent term more often used in the United Kingdom.

People First Language

An approach to disability terminology in which the word “person” comes first, modified by “disability” or a specific condition, as in “people with disabilities” and “person with a Cerebral Palsy”.

The idea has two main components:

First is to emphasize that disabled people are, first and foremost, people … with dignity, rights, and agency … rather than being thought of as simply a condition to be studied and examined impersonally.

Second, “people first” language, for many, expresses a specific way of understanding disability, not as an all-encompassing identity, but as an adjunct aspect of an individual with many other traits and qualities.

“People first” language, along with using the word “disability” has been the most broadly accepted “ regressive  or “politically correct" way of referring to disabled people, for around the last 25 years. However, recently, a counter-movement has arisen arguing that “people first” language doesn’t adequately reflect the realities of living with disabilities. The idea is that separating the disability form the person doesn’t accurately reflect the degree to which many peoples’ disabilities become integral, inseparable parts of their lives and personalities. Others argue that to say “I am disabled” more accurately reflects the impact of ableism and stigma imposed by society.

“People first” remains the standard practice in the community at large, and among many established disability advocacy groups, while “disabled” is gaining ground among activists and people more involved in disability culture.

Quote

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

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

"Let Us Now Praise Famous Men"

Pioneer in aiding disabled mourned

Bob Gardinier, Albany Times Union - June 28, 2014

I ran across this article almost by accident, but I found it fascinating in I’m sure a completely different way than what was intended.

Let me say first that I don’t know anything about Mr. Fitzgerald, or about the agency he apparently gave so much of himself for, the Center for Disability Services in Albany, New York … not that far, really, from where I live. For all I know, he was probably completely sincere and well-intentioned, as selfless as his friends suggest he was, and even progressive in his view of disability, at least in the context of his life and times.

That’s just it though. The whole article feels diffused with a very old-fashioned, back-slapping, golf-tourney, rich guys doing good vibe that seems more in line with a Jerry Lewis Telethon than with an ADAPT protest, or even a modest Center for Independent Living.

I’m really not trying to be mean, but the article, unintentionally highlights not only a difference in philosophy … the Center has a sheltered workshop where Mr. Fitzgerald’s own son works, for God knows how long … but in tone and personality between “your grandfather’s” disability agency, and the consumer-driven, activist organizations of today. Except that it isn’t really yesterday and today. In many cities and towns the two kinds of disability agencies live side by side, rarely battling each other directly, but eyeing each other with suspicion and perplexity. In general, they also tend to have entirely different bases of support, and cleanly separated spheres of influence and awareness.

Anyway, I realize that’s a lot to get from a the obit for a local benefactor, but boy did it come through to me loud and clear.

Disability In Comics

With great power comes great disability

Kathleen Hawkins, BBC - June 24, 2014

(Via Media Dis & Dat)

I am fascinated by pop culture, but I have never been a comic book person, so I really appreciate this BBC article about the history of disabled characters in comics. It seems to be inspired by the recent addition of Harper in the Archie series, but it looks back at some successful and short-lived disabled characters and superheroes, including Daredevil and Oracle, (a.k.a. before her injury, Barbara Gordon or “Batgirl”).

I can’t tell from this article, or my superficial exposure to comics traditions, whether disabled characters in comic simply follow the same disability tropes seen in other media, or if the comic book medium fosters either much more sophisticated depictions, or much less. It does seem like the X-Men series may be richer in disability themes than any other of the explicitly disabled characters in comics and superhero universes. It also seems like there is still plenty of room for at least a few more nuanced, developed disabled comic book characters.

Weekly Wrap-Up

Sunday, June 22, 2014

• Things That Make Me Happy

Monday, June 23, 2014

• Blog Changes

Tuesday, June 24, 2014

• A Little Moxie Summer Blog Hop - "My Connection with Disability: An Introduction"
• Olmstead, With Charts!

Thursday, June 26, 2014

• More About Olmstead
• Knope’s Bold Idea

Friday, June 27, 2014

• Disability and Politics
• A Little Moxie Summer Blog Hop - "Coming to Terms with Disability in My Life"

Saturday, June 28, 2014

• Great Video Series

Great Video Series

A little over a week ago, I ran across this video on bullying by the Australian group, Cerebral Palsy Alliance. I was working on something else at the time, so I put it my reading queue, and promptly forgot about it.

I finally just watched it, and I'm really impressed. Most disability awareness campaigns are targeted mainly to non-disabled people. These videos deliver separate messages to two different audiences at the same time ... greater understanding for non-disabled viewers, and believable, credible empowerment for people with disabilities, especially those who are young.

Other videos in the “Making It Real" series:

• Personal Hopes
• Relationships
• Everyday Challenges
• Achieving Your Goals
• Building Confidence

A Little Moxie Summer Blog Hop - "Coming to Terms with Disability in My Life"

This will be an uncharacteristically short blog post for me, because I kind of deal with this issue of “coming to terms” all the time at my blog, Disability Thinking. Just visit there and browse, and you should be able to figure out how I have and have not come to terms with disability in my life.

I will only add this …

I am 47 years old. I have had disabilities all of my life. I have been exposed to a wide range of different ideas about disability, approaches, disability cultures, and philosophies. Yet, although I mostly relate to a generally “positive” view of disability, I can’t entirely buy into the idea that disability is “great” or “awesome” or “special”. Nor does it feel right to say it’s a “tragedy” or “handicap” or “illness”.

To me, disability isn’t a good thing, or a bad thing. It is just a thing. I used to think that was a cop-out, but more than ever, I really think that’s my answer … the terms I have come to with disability. Any other answer seems off-target and reductive.

Disability and Politics

Are you a Democrat or a Republican? A Progressive Conservative, Liberal, or New Democrat? Labour, Tory, Liberal Democrat, or whatever that UKIP thingy is? Are you a liberal or conservative, or perhaps a libertarian?

If you're not sure, or if you think you could do with a bit of a check-in on your political views, take this new Pew Research Center questionnaire to find out your approximate political position, at least in relation to US politics. Be sure to note the emphasis on choosing the answers closest to your beliefs. You will probably find several questions where you like aspects of both answers.

I also recommend this Vox.com article about the Pew Center’s new report on politics in America, which, among other things, subdivides the traditional red vs. blue, liberal vs. conservative formulation into more specific viewpoints. It’s an interesting read.

Then ask yourself, "Does my disability experience have any affect on my general political views?" Or, do your political views influence how you understand disability?

Sometime in the next few days, I plan to post something about how I “scored” on the Pew questionnaire, and how that relates to my understanding of disability.

Knope's Bold Idea

I just re-watched Season 4 of Parks and Recreation, in which Leslie Knope runs for the Pawnee, Indiana City Council. I had totally forgotten the interesting little disability story in Episode 17, which includes “Ramp Up Pawnee”, candidate Knope’s proposal to build a ramp on every set of stairs in Pawnee, in a bid to win the essential Senior Citizen vote.

Considering it is only one theme in an otherwise packed episode, there is a lot to chew on, especially for disabled people who can relate to wheelchair accessibility problems:

- There is the idea itself … that a local politician running for office would think that pledging to improve a town’s accessibility was a good way to win votes, so much so that her opponent felt forced to make a “better” proposal to address the same problem.

- On the one hand, it’s so unusual that the joke fits well into “Parks & Rec’s” absurdist tone. How many real-life politicians make physical accessibility improvements a key priority? It’s practically unheard of, and the completeness of Leslie’s proposal is as absurd as it is awesome.

- On the other hand, it’s not absurd at all. Seniors are an important voting bloc, and accessibility is potentially an important issue for them, not to mention younger people with disabilities. The fact that it’s kind of a joke on the show just underscores what an untapped opportunity it is in actual politics.

- Leslie’s opponent, rich kid Bobby Newport, counters with a “better” proposal … install lifts rather than ramps. I guess it’s better because it’s more expensive. The thing is, in most cases, ramps are easier, and lifts are a last resort when ramps are infeasible. Lifts are, generally, a pain in the ass. On the show, it’s just accepted that lifts are better.

- For some reason, I just love Leslie’s slogan for her ramp initiative: “Stairs are a young man’s game!” It’s not even very accurate, but I like that there’s a hint of pride to it … almost like saying, “Stairs are for chumps”.

- “Not enough ramps is the number three complaint among Pawnee seniors, right behind ‘Everything hurts,’ and ‘I’m dying.’” – Leslie

- When I Googled the episode, I found this fantastic website for the Knope 2012 campaign, including a page on Leslie’s proposal, “Ramp Up Pawnee!"

As has often been said, these brief story lines are a great way for TV shows to help “normalize” disability and disability issues.

More About Olmstead

Because there's always more to say about Olmstead …

Checkered Progress on Disabled Care Despite Ruling

Matt Sedensky, Associated Press / ABC News - June 26, 2014

"Brent Kaderli has a wheelchair-accessible van waiting in the driveway, a hospital bed in a spare bedroom and an electric lift that's left unused. If the 30-year-old quadriplegic had his way, he'd be living here, in his father's house, with help from aides. Instead, he is in an institution, hoping each day for a place that feels more like a home …"

“… Progress has been made in every state to keep more aged and disabled people in their homes and communities, but only half of Medicaid spending goes to such care, with the services routinely denied by a system that favors institutions even though they're typically more expensive to taxpayers.”

This is a very thorough article, making a good case that politics and profit, not health and safety are the main reasons why nursing homes and institutions are still the “default” option for Medicaid long term care.

NCD Statement on the 15th Anniversary of the Olmstead Decision

National Council on Disability - June 22, 2014

"Even as we celebrate the 15th anniversary of the Olmstead decision, NCD recognizes that there is more work to do. As courts continue to apply and interpret what Olmstead means and how best to implement practices and policies that reflect its core principles of self-determination and inclusion, NCD offers the following guidance to facilitate and foster ways that people with disabilities can work, play and contribute to all aspects of American life alongside our non-disabled peers.”

The National Council on Disability highlights how the Olmstead decision is also changing disability policy in employment, and in services to people with developmental disabilities.

15 Years After Olmstead – Our Commitment to Community Living

The White House - June 20, 2014

"All indications are that we are heading in the right direction. We are working to address many of the most imposing barriers facing those who want to live on their own: finding affordable, accessible housing and improving access to quality support and services tailored to each person’s goals …”

“… Can people eat food they like, when they want to? Choose their roommates? Have guests visit when they want? Come and go from their home as they please?”

The White House shares some individual Olmstead success stories, and focuses on affordable, accessible housing, a key component and often a key barrier to people who want to leave institutions and live in their own homes. The statement also notes recent changes in the definition of integrated, independent living. It has less to do with whether you rent or own, live with others or not, or how much daily help you have … and more to do with whether you in a household, or are a patient, resident, or client.

Olmstead, with Charts!

Olmstead 15th Anniversary [Part One] - How Much Progress Has Your State Made?

Information Bulletin #390

Steve Gold - June 20, 2014

This past Sunday was the 15th Anniversary of the U.S. Supreme Court decision in Olmstead vs. LC and EW ... or just Olmstead for short. It is an imperfect analogy, but not too far off to say that Olmstead is to people with disabilities what Brown vs. Board of Education is to racial segregation.

In its Olmstead decision, the Supreme Court applied the Americans with Disabilities Ac, an act of Congress in 1990, in a novel way. It found that "long term care" is a service, like any other, and that state governments that fund long term care must be sure to offer the service in the "most integrated settings", i.e., in peoples' own homes, not just nursing homes and institutions. It also affirmed that a person's choice of where and how to receive long term care services should play a role at least equal to the opinions of doctors and social workers. Finally, the decision ... and the President's Executive Order in 1999 which endorsed strengthened it ... underscored that states and localities might have to change their long term care programs and practices, even to the point of complete overhaul, in order to comply. "The way it's always been done" would no longer be an acceptable limitation, and "We don't offer that kind of service here" could no longer be an excuse.

Let's put it another way. If you, or your disabled child, or your aging parents, need help with everyday self-care every day, or several times a week, and your county or state says the only way they can get that help to leave their home and go into a nursing home, assisted living, group home, or other institutionalized facility ... that is a violation of their civil right to choose getting care in the manner and place they choose. It doesn't say they can't go into the "old folks' home" if they want to, but they can't be forced to just because nobody can or wants to figure out another way for them.

Most people, given the choice, would rather live in their own homes than nursing homes. With this Olmstead concept asserted at the highest level of U.S. law, the expectation was that more people would get care in their own homes and fewer in institutions.

A good way to measure how Olmstead has changed long term care for disabled people is to look at how Medicaid spending on long term care overall is divided among institutional care and community care ... between "facilities" with numbers of "beds", and care provided to people in their own homes and apartments. Steve Gold, one of the foremost advocates and policy analysts on long term care, recently published national and state-by-state data on community vs. institutional Medicaid spending, comparing 2000 with the latest complete data for 2012. Here, in chart form, is some of what he found:

Nationally

We still spend a good deal more than half of Medicaid long term care dollars on institutional care than we do on providing care in peoples’ own homes, but there has been a 20.1% shift towards community-based care. That’s a pretty big shift that almost certainly is the result of policy changes and peoples’ choices, not changes in peoples’ physical needs. In other words, it’s a shift that has occurred because we wanted it to occur, and made it happen.

States

There is a vast difference among the 50 states. It’s interesting to note that the two states at the opposite ends of the spectrum are the neighboring states of North Dakota and Minnesota. North Dakota is still much more invested in institutional care, while in Minnesota, institutional care is still substantial, but also a clear second to community services, a still a rarity when in most states, institutional care still outweighs community services. Finally, it’s encouraging to see that while some states have made only modest changes, and others have a long way to go, every state has improved it’s balance in favor of community care.

Again, these different numbers can’t be driven by differences in need … disabled and elderly people most likely have the same kinds of needs and preferences in both states. Such a huge difference in spending must be due to different policies, and policies can be changed.

What it means for people is that more of the people who need long term care … children, young disabled adults, and people with disabilities from age … now are able to get it in their own homes, and fewer wind up in nursing homes or other institutions against their wishes. That is progress, and it’s far more dramatic than any chart can fully demonstrate.