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.

A Little Moxie Summer Blog Hop - "My Connection with Disability: An Introduction"

This is my first contribution to the "A Little Moxie" Summer Blog Hop.

My connection with disability is that I have disabilities. Actually, I have one underlying genetic condition called Arthrogryposis, which produces a variety of impairments.

That doesn't mean that I have always connected with my disabilities in the same way. Looking back, it seems like I have gone through four phases in my understanding of disability:

Aware and Ignore

I can’t remember a time when I didn’t know that I was physically different from most other kids, and it feels like I always associated this with words like “handicapped” and later “disabled”. When I had to have surgery, intensive physical therapy, new braces or orthopedic shoes, I would focus on my disabilities for a brief window of time. Mostly, I ignored them while adapting to them. That is, I never tried to act like I could do everything non-disabled kids did … I didn’t ignore my disabilities that way. But I didn’t think about my disabilities or excessively worry about them during times when nothing in particular was happening with them. Until my Senior year in college, for the most part, the topic of disability in general bored me.

Awakening

I was a Senior in college in 1989, the year that students at Gallaudet University made national headlines with an extremely effective protest that resulted in the appointment of Gallaudet’s first Deaf President. Gallaudet is the nation’s premier university for the Deaf, nearly all of its students are Deaf, and their protest was the first time I became aware of people with disabilities focused on disability but in a militant and empowering way, not pleading or pitying. This was the era when Jerry Lewis was still broadcasting a popular and admired telethon fueled on tears, sad photos of bereft children, and the catchy by in retrospect creepy concept that kids and adults with Muscular Dystrophy were “Jerry’s Kids”. This was disability activism in my eyes, until I saw the Gallaudet uprising. It’s important to note that it was not at all the first mass protest by disabled people in history, just the first one I knew anything about. My attitude towards my own disability started to change then. I began to realize that there might be a connection between a part of myself I sort of despised … my disabilities, and something I had come to love, political thinking and activism. I still didn’t do anything about it right away, but for the first time I could envision another way to think about disability that was both personal and political.

Working

A few years later, after writing a Master’s thesis on depictions of disability on television, I learned that a Center for Independent Living had opened in my home town. I didn’t know what a CIL was, but I soon found out, and got a job there after doing a summer internship. Over the next 23 years I went from a staff position to being Executive Director. No matter what position I held, however, the important thing is that I got to know literally thousands of people with all kinds of physical and mental disabilities, from every conceivable background, with a variety of strengths and human frailties, and facing social, physical, and sometimes most significantly … financial barriers to independence and fulfillment. This experience broadened my horizons, and gave shape to my understanding of things like ableism and discrimination, body shame and acceptance, trauma and empowerment, and how disability crosses with race, gender, education, and economic status. I also developed strong convictions about long term care, education of disabled kids, and the importance of policy in affecting the lives of people with disabilities. And, I got very tired, and very burned out. Worst of all, from my point of view, I started to feel cynical about the people we were trying to “help”. It seemed like “we” in the Independent Living Movement were more interested in independence and empowerment than the people with disabilities we met in our communities. For that and other reasons, I stepped down from my position, and started “disability blogging”. Physically, I needed to rest. Mentally, I needed to refocus and recharge … or else cut my connections for good and do something else entirely.

Listening and Learning

Blogging turns out to have been the perfect choice. I went in thinking that there were few good disability-related websites and blogs, and instead found not one, but several vibrant disability blogging communities that restored my faith in the disability community, and my humility about having all the answers. I found parents of kids with disabilities, whose blogs provoked me, challenged me, and gave me new insight into my childhood and family. I found younger people with disabilities … teens and young adults … who seemed to perceive no great contradiction between complaining when disabilities got hard, calling out ableism in everyday life and culture, and being awesome in their disabled bodies and minds. There are lots of 25 year olds who are more comfortable with their disabilities than disabled people twice and three times their age. I also found that my ideas of disability weren’t necessarily state-of-the-art anymore. Some aspects of newer thinking about disability I have a hard time with, but for the most part, new formulations and ideas have energized me, and given me a renewed respect for disabled people of all sorts who do what they must to survive and thrive.

Finally, this journey has brought me to the point where I feel both more comfortable with my own disabilities, and more unsettled and curious … in a good way.

Blog Changes

I have made a few changes and additions to Disability Thinking recently:

- The title photo and font are a little different, for no particular reason except I think they look a bit better.

- There is a new link list on the right column, “Useful & Entertaining”, linking to my favorite sites not related to disability matters.

- I will be participating in two “blog hops”, which I have added at the bottom of the page. These will show links to blog posts by all participants, including me when I add my own. They are from two excellent disability blogs, A Little Moxie and Down Wit Dat.

- Last weekend, I asked for help developing a snarky lexicon of disability terms and slang. I have since decided to make it more or less straightforward and non-satirical, though it will definitely contain “definitions” from a particular point of view. Expect the first few entries soon!

That is all.

Things That Make Me Happy

Guise!

Tattered Obsidian - June 22, 2014

This blog post perfectly illustrates how so many disabled people struggle with conflicting feelings and pressures about using … or not using … wheelchairs, crutches, and other types of adaptive equipment. Also, what a waste it can be to shun adaptations and try to do everything the hard way, especially if it’s because of other peoples’ opinions. And finally, it’s a lovely example of disabled people supporting each other, even when they haven’t even met.

Weekly Wrap-Up

Sunday, June 15, 2014

• Happy Father’s Day!
• Disability History Timeline

Monday, June 16, 2014

• Another Great Disability Song
• Photo Of The Day

Tuesday, June 17, 2014

• Best Article On Being An “Ally”
• Cops, And Rent-A-Cops Gone Wild

Thursday, June 19, 2014

• I Need To Talk About Tywin and Tyrion …
• A Disability Show for Netflix?

Friday, June 20, 2014

• Thought Balloons
• Join The Lexicon Project!

Saturday, June 21, 2014

• Two Takes on Terminology
• Two Takes on Terminology: Supplemental

Two Takes on Terminology: Supplemental

Here’s an appropriate TED Talk to go with the post below. TED Talks have become kind of annoying, but every now and then a really good, relevant one comes along.

Two Takes on Terminology

When “Disabled” is a Dirty Word…Thoughts on Terminology

Girl With The Cane - June 21, 2014

Sex, Drugs, Money, Bodily Waste, Flatulence, Death and Cripples (to Name a Few)

Smart Ass Cripple - June 19, 2014

At first glance, these two articles on disability terminology seem like they might be very similar. Read them through and you will find they are quite different. And yet, think about it again, and you’ll find they both grapple with the same phenomenon. While words like "disability" are seen by a lot of people as negative, there is also something deceptive and grimy about the supposedly positive alternatives people try to use ... like "differently abled" and "physically challenged".

I suspect that the root of the conflict is that people have radically different understandings of language itself. For some, words mean what they appear to mean, their meanings are fixed, and that's it. For others, words' meanings evolve, words mean different things to different people, and we can shape what words mean … especially when they are meant to describe our own experiences.

The debates will probably go on forever, and maybe that's okay. It's another way for us to deepen our understanding of disability ... whatever you want to call it.

Music For A Friday Evening: 25 Years Ago ...

I’ll try to keep my comments from sounding too much like an old fart on YouTube.

It’s hard to describe the mixture of feelings watching old video clips from the 1989 Moscow Music and Peace Festival. First of all, it happened in that really short few years when the Russia was still the Soviet Union, a nominally Communist superpower, but in the process of more or less voluntarily loosening up and generally saying “fuck it” to the whole world domination thing. Then of course there are the hair bands. On of them was Bon Jovi, which is still a going concern, but one of my favorites for a little less than a year was, oddly, Cinderella. Let’s just say I think their music aged a lot better than their look. Two years later, the likes of Nirvana took over everything, and I’m not sorry … but I still sort of get a kick out of these guys once in awhile. And it really does look like those Soviet kids are having a great time. I wish things could have gone smoother for them.

Join The Lexicon Project!

There is something I would like to add to the Disability Thinking Blog, and I’d like some help with it.

One of my favorite blogs for general political discussion, from a particular point of view (generally liberal / progressive), has a three-part “Lexicon”, which gives funny, insightful “definitions” for all sorts of formal and informal terms related to politics, and particularly how politics are discussed on the Internet. You can check them out at these links:

Balloon Juice Lexicon:

• A-H
• I-P
• Q-Z

What I have in mind is a similar Lexicon for disability-related issues, culture, and Internet discourse. Here are some of the terms I'd like to start with:

Disability Lexicon

Ableism / Disableism

People First Language

Spoon Theory / Spoonie

Handicapped

Differently-Abled

Appropriation / Appropriative

Intersectionality

Medical Model

Social Model

Reasonable Accommodation

Accessibility

Universal Design

Autism Speaks

Neurotypical

Intellectual Disability

Retarded

Advocacy

Center for Independent Living

Assisted Living

Olmstead

ADA / Americans with Disabilities Act

Nursing Home

Home Care

Personal Assistance Services

Sheltered Workshop

Supported Employment

Developmental Disability / Developmentally Disabled

Special Needs

IEP / Individualized Education Plan

Special Education

Vocational Rehabilitation

Physical Therapy

Occupational Therapy

Assistive Technology

Devotee

Microaggression

Stimming

I’d like it if all the definitions could have a somewhat humorous, sarcastic tone, but also be more or less accurate. Or, at least accurate from a more or less “social model”, “crip culture” perspective. For that reason, I have mostly left out disability types, since I can’t really think of any sarcastic things to say about them at the moment.

Would anyone like to take a stab at any of these definitions? Would this even work? Should use a different approach … maybe straightforward, without sarcasm?