Thursday, November 21, 2013

Tough Love?

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Love That Max - November 21, 2013

I have started reading Love That Max, a blog about disabilities from a parent’s point of view. So far, it’s the only parent-oriented blog that I follow.

My parents didn’t talk to me much about my disabilities when I was growing up … at least not directly. At least not that I remember. Reading the Love That Max post linked above, I thought of one time when my Mother told me about her reaction when I was born and found to have several complicated “problems” that nobody seemed to have a handle on.

Mom told me that for an unspecified amount of time right after my birth, she was very upset, angry, grief-stricken, whatever. She then told me one day she was unloading her feelings with a close friend … Why me? Isn’t this terrible? What are we going to do? … and the friend said something like, “Well, it certainly would have been a lot simpler for you if he hadn’t been born!”

Mom said that this was a crucial moment that “snapped her out of” her spiral of grief and regret, and refocused her on her love for me as her child, and on the future and what needed to be done.

I’m not sure how I feel about this today, but I remember that at the time I felt really good hearing the story.  For some reason, it satisfied a lot of my questions. I guess the incident must have settled most of Mom's questions, too, or at least made them manageable.

Years later, Mom told me about a similar turning point for her that happened in a similar way. When I started college, I had just gone through a really terrible medical crisis. My recovery from that coincided exactly with the start of my Freshman year. I was at college far from what was then home (Olympia, Washington), and my Mom was there, staying in an apartment near the college. It hadn’t been part of her plan or anyone else’s to stay with me, but she was because like I said, I had just gone through like two months of weird medical problems and hospital stays. Apparently, one day she was talking on the phone to one of her friends back in Olympia … just a casual conversation at first I guess … and suddenly Mom just started unloading all of her confusion, sadness, and lack of direction. I was doing okay, you see, but she was still stuck in crisis mode. Well, according to Mom, the friend just said, “Claire, come home.”

That was it, I guess. Mom told me about this the very next day, literally in the process of explaining why she was leaving. As I recall, she was gone by the end of the week. Frankly, I was extremely pleased at the time. I couldn’t have found the words or the gumption to tell Mom I didn’t need her around anymore, but that’s exactly how it was. And once again, it took a friend … not a relative, doctor, or counselor ... to tell the simple, honest truth in a way that my Mom could digest.

Unless I’m mistaken, Mom and Dad never connected with any sort of disability / parents community. I think they saw it as too “touchy-feely” or something. I wonder, if I’d been born in 1997 instead of 1967, would they have read “special needs” blogs like Love That Max? I feel like that might have been more likely, as blogs allow the option of participating anonymously. Plus, they both loved reading.

Seeing in these blogs how continuous the difficulties of parents with disabled children are, I also realize that they can’t really be solved with a moment of tough love from a friend. Yet, I also sometimes think that’s exactly what more of these parents ... and their disabled children ... need.

Wednesday, November 20, 2013

Video Of The Day

For both informational and entertainment value, this is AmputeeOT’s best video in quite awhile!



I confess, I kind of enjoyed seeing her struggle a bit. Usually, her videos show her being ultra-competent and totally on top of things.

Incidentally, one of the YouTube commenters for this video said that it was “inspirational”. That gave me another little insight into why so many of us hate the word “inspirational” when applied to disabled people and the stuff we do. It’s inappropriate. It is the right general tone … positive … but the wrong word for what we’ve actually seen. This video is many good things, but “inspirational”? Not really. Choosing the wrong word really wouldn’t be a big deal, either, except it suggests that the reaction is more of a reflex than an appreciation … that the person wasn’t really paying attention.

Misery Calculator, Revisited

I’ve simplified my “Misery Calculator” the rating system I was playing around with in early October to try and figure out how a person with disabilities can map out the medical and social factors that make up their disability experience. There are now six measures, three “Medical” (internal) and three “Social” (external):

Medical

Physical / “Spoons” … physical disabilities and / or physical stamina and wellness.
Mental / Cognitive … mental health and / or cognitive functioning.
Sickness … acute illness separate from a disability (i.e., a cold or flu)

Social

Physical Barriers … building accessibility, transportation.
Tools & Resources … adaptive equipment, personal assistance, money.
Ableism … prejudice, discrimination, annoying things people say.

The idea is to give each measure a number value between 0 and 5 … 0 being “no problem at all” and 5 being “absolutely terrible”, or something like that.

This provides two measures of the disability experience: 1) Total Misery Level (total of all scores, compared to the total possible score of 30), and the Medical / Social Ratio (how much of your Misery Level is from “Medical" factors and how much from external “Social" factors.

Here’s me, as of today:
For me, my physical condition makes up the lion's share of my total disability experience, though social factors are part of the picture. Also, my disability overall is sort of in the middle ... less severe than many and more severe than some.

Understand that this isn't exactly the breakdown you'd find in every disabled person. The point is that each person's profile is going to be different. One reason why many of us emphasize the "Social" aspects of disability is that for a lot of people, they are more significant than their actual medical conditions. For instance, I can easily envision a paraplegic who is otherwise healthy and emotionally happy, for whom the biggest problems are in the architectural barriers she runs into, peoples' awkwardness around her, and maybe reduced job opportunities due to discrimination.

Another difference among us is that I'm sure some of us will have the same or similar ratings from week to week, month to month, while others might fluctuate quite a lot. And of course, we all go through days when the "Social" barriers all seem to crop up at once ... the days when you are fine, but you probably should have stayed in bed.

Tuesday, November 19, 2013

Here's The Thing ...

There's not much point in making something "almost" accessible.

My Obamacare Experience, Part II

I said back in early October that I would document my Obamacare experience, so here's the next installment.

A few days ago, I went back to New York State's Insurance Exchange website, nystateofhealth.ny.gov. I found that the account I wasn't sure I'd properly set up in early October, was set up properly. I then started a full trip through the website to find out what I might qualify for, given my slightly unusual situation. So far, everything has worked out fine, and I have a pretty good idea of what's going to happen with my health insurance.

First, I'll continue with a slightly different plan that my former employer has chosen, which I'll pay for through the COBRA provisions. Sometime in January or February, if the information I have is correct, I'll move over to Medicaid, which I will stay with unless and until I find a job that ups my income sufficiently and / or provides better coverage. Given the breadth of Medicaid coverage in New York, it may be hard to find a better policy for any price, but you never know.

My conclusions? Speaking only for myself ...

1. New York’s Exchange website worked fine, supported by a helpful and fairly quick phone call when I had trouble understanding one of the questions put to me.

2. It looks like I have marginally more choices in health insurance now than I've ever had before, more possible contingency plans should my employment or money situation change, and a confidence I never had before that my health insurance ... which is absolutely essential to my survival ... will no longer depend on my employment status.

By the way, I once again recommend following Sarah Kliff’s daily updates on the Affordable Care Act, at Washington Post’s Wonkblog. Her reports are easy to understand, sober, and in-depth.

"Should I Stay Or Should I Go?"


advocacy topic icon
That Crazy Cripple Chick - November 12, 2013

Bad Cripple - November 17, 2013

Megan Rogers, Inside Higher Ed - November 19, 2013

Ellen Seidman, Love That Max: Special Needs Blog - November 19, 2013

I’ve read four pieces on accessibility failures in just the last week. That may not sound like many, but it is unusual. Most disability-related stories and blog posts aren’t specifically about accessibility, so this many in such a short time looks like a mini-trend. At any rate, reading them one after the other, I think you’ll find the same themes cropping up.

Of course, the most obvious is that businesses and other public spaces are still not as wheelchair accessible as they should be. The only thing that amazes me more than this is the number of people who are amazed by this. I can’t tell you how many non-disabled people have told me about trying to have dinner at a restaurant with a disabled relative, and asking me, without irony, “Didn’t the ADA require all places to be accessible long ago?” Welcome to our world!

What's really got me thinking though is the variety of ways people respond to accessibility barriers. The person in the first article wrote a letter to convention organizers. The second left the conference to which he’d been personally invited. In a followup, we see that this person did follow up and got some response from the organizers, though their stated action plan seems to me to leave plenty of room for further procrastination and excuse-making. Then we have a mother who comes at the issue from a different angle. As a parent, she’s in some ways more distant from the issue, and at the same time potentially more fierce in her response.

album cover of The Clash - Combat Rock
When I think about what’s the “right” response to lack of accessibility, I’m reminded of that line from that song by The Clash:

"Should I stay or should I go now?
If I go there will be trouble,
If I stay it will be double."

Is it better to leave the place and follow up later, or stay and make your point on the scene, publicly? I think a lot depends on the person, which methods work best for them and fit their personalities. It would have been interesting if William Peace (a.k.a. “Bad Cripple”) had stayed at the conference and called the organizers out for their … no other word for it … stupidity. But I trust he knew himself, and perhaps knew his audience too, and did the best, most effective thing for the occasion. Becki, Izabella’s mother, had other concerns and arguably more at stake. If she’d basically boycotted her child’s pageant, her child would have suffered even more, and at four years old is probably too young to understand the trade-offs and sacrifices involved in self-advocacy.

Every situation and every person is different, but we all have to grapple with the same questions. Am I being unreasonable? Is the access that’s there “good enough”, even if it isn’t perfect? Am I good with confrontation? Can I keep my cool while making a strong impression? Can I even afford to leave and try somewhere else right now? Am I advocating for myself, for now, or for the next visitor with a disability … for posterity? Is the problem a truly "innocent" mistake, or should this person or organization really know better? Does it matter?

And of course, will I live to see a day when this kind of situation is truly rare?

Monday, November 18, 2013

Photo Of The Day

small boy in wheelchair, man crouched down, playing flute for the boy
From the Disability Curious Tumblr blog. (Child & Flutist)

Disability News

News topic icon
Lucy Berrington, Psychology Today - November 14, 2013

This is a very good primer on the Autism Speaks controversy. I like the way it is structured around the kinds of questions people unfamiliar with the issue are likely to ask. This is the kind of issue outline that should be prepared for all sorts of disability issues that get mainstream media attention. It’s right to complain about journalists’ ignorance of disability issues, but it’s also probably up to us to educate them.

Bob Greene, CNN - November 17, 2013

I honestly thought when I started reading this article that the disabled man was going to turn out to have been killed, maimed, or tortured. I’ll bet he was scared to death, and probably felt extra humiliated because he was targeted for his disability. But, I can’t help feeling that Bob Greene’s tone in the article just doesn’t match the actual severity of what happened. The man was robbed, but he wasn’t injured. I know that’s not saying much, but it’s not nothing. Maybe I’m just naturally contrary about these stories, but I see evidence of a story about a significantly disabled man who lives independently, has full mobility in society, and who is taking a rare but not unheard-of misfortune of city life … a mugging … in stride. Yes, he was targeted because of his disability, but there’s nothing in the article that suggests it was anything like a “hate crime”. I feel bad for the man, and I do think it’s pretty low to target a person in a wheelchair this way, but sorry, I don’t get the “revulsion”.

Ableism In A Nutshell

I’m re-watching the early seasons of “Downton Abbey”, the ITV / PBS series that takes place in England in the ten or so years after 1912. In Season 2, a main character has a spinal cord injury from fighting in World War I. He’s being pushed around the big estate’s grounds in his wheelchair, by his on / off, will they / won’t they lover.

He, the disabled man, says, “I’m strong enough to push myself.” She, the non-disabled woman replies, “I’ll be the judge of that.”

It’s a tossed-off line, not the start of an argument, not even a mild one. It’s just something they say. But what a pure, distilled example of one of the main forms of ableism.

Saturday, November 16, 2013

Photo Of The Day

From the Wheeliewifee Tumblr blog

Daily Doses

I don’t only visit disability blogs and websites. I also have a list of other sites I read pretty much every day …

Press-Republican … My hometown newspaper.

Wonkblog ... Part of the Washington Post website, Wonkblog offers several posts a day on current events, with a greater focus on policy, data, and how things actually work than most editorial blogs. It's a good place to find simple yet thorough "explainer" articles on current hot topics in the news. They also manage to maintain a fairly lighthearted style, while never trivializing important issues. Wonkblog is worth a look for it's coverage of the Affordable Care Act alone.

Salon.com … I’ve been reading this online magazine since the mid 1990s, though I find myself appreciating it a little less these days. I read Salon for its coverage of politics and cultural trends, and for a few of it's columnists, such as Alex Pareene and Joan Walsh.

Eschaton … I admire blogger Duncan Black’s brief style, (which pre-dates Twitter), and generally agree with his political views. He’s especially good at getting to the heart of complex issues, and isn’t afraid to repeat himself, especially ideas that don’t get enough airing.

Matthew Yglesias … A good blogger on economics from a Democratic / moderately liberal perspective. Like most of the other bloggers at Slate, he likes to explore seemingly counter-intuitive, but possibly valid ideas.

Ta-Nehisi Coates … I’m not particularly well read on issues of race, but for what my opinion's worth, Coates is far and away the most exciting, challenging, poetic writer on race, ethnicity, and gender I’ve ever read. I also find that his writings on race have affected my understanding of disability, even though as far as I know, he has never written about disability.

Balloon Juice … An important aspect of the blog’s history is that it’s founder, John Cole, started the blog in the early 2000’s as a staunch Republican, rabid Bush supporter, and loud defender of the Iraq War. You wouldn’t know it now, except that Cole applies the same passion and pugnacity to his writings as a staunchly liberal Democrat. Actually, most of the posts are by an equally excellent slate of bloggers that Cole manages. A good place to learn how to use casual language and an artful touch of crudeness in service of ideas you really care about.

The A.V. Club … My starting point for popular culture of all kinds, and a first stop for reviews on my favorite TV shows.

The Dissolve ... A fairly new website on films of all kinds, both new releases and old classics. If you like movies, and would like to know more about movie history, this is a great site to visit regularly.

What are your favorite daily Internet reads?