From the Disability Fashion Project Tumblr blog.
Tuesday, April 15, 2014
Tax Day!
Matthew Yglesias, Vox.com - April 14, 2014
"As the saying goes, the government is an insurance company with an army — it takes care of the elderly and the sick, and it projects force abroad.”
Since today is tax day, I agree with Vox.com that it is a good time to look at the broad outlines of what the Federal Government spends money on. I am also including the chart they use, from the Center on Budget and Policy Priorities.
The quote above seems to say it all, and I must say, put this way, it doesn’t sound so terrible. The “insurance” part … Social Security, Medicaid, and Medicare I happily support. The military? Well, that’s another matter. Still, until we decide to become an entirely different kind of country, it seems like the United States’ position in the world means that the military will always be a big portion of the Federal Budget, with modest fluctuations as circumstances change.
A few more thoughts:
- It is hard to pick out spending for disabled people, because most of our direct benefits are parts of the Social Security, Medicaid, and Medicare categories, plus portions of the 12% “Safety Net” category for things like Food Stamps and Housing Subsidies. This report doesn’t say how much of Social Security is Disability and SSI, and how much is Retirement, which I might try to find out.
- It has been said before, but bears repeating. Non-miliary foreign aid, shown here as “Non-Military International” is only 1% of the Federal Budget. So the notion that we ought to stop spending money on foreigners and help our people here is really kind of an empty idea. The same goes for things like government worker salaries and pensions, and paying Members of Congress. We might begrudge them their perks and benefits, especially when we disagree with them anyhow, but paying them nothing wouldn’t add much to programs we actually like, or reduce the deficit.
- Why is “Education” so low? Because this is the Federal Budget, and most day-to-day costs for public education are borne by states and localities. Federal money for Education generally goes for grants and extra supports which, again, don’t amount to much in comparison to the rest of the Federal Budget.
- Where is Obamacare? It isn’t here yet, in a chart of the 2013 Federal Budget. Next year it will probably be split between the “Medicaid and Medicare” category, and maybe have a category of it’s own for the subsidies people will be getting to buy private insurance.
Monday, April 14, 2014
The Guy With The Sign
Adam Ferrise, Northeast Ohio Media Group, Ohio Media Group / Cleveland Plain Dealer - April 14, 2014
I am deeply ambivalent about this. On the one hand, the man’s specific acts of bullying are so bizarre that maybe there just aren’t any really appropriate legal remedies for them. The judge may have felt that none of the normal punishments available to her seemed right. As terrible as the man’s behavior was, it would probably be overkill to put him in jail for months or years, and it’s doubtful he has the money to pay a really big fine. But you can’t just ignore what he did, and public shaming may serve not just to punish Mr. Aviv, but also to raise awareness of bullying and the more vicious forms of ableism.
Also, it is possible that public shaming is just what Mr. Aviv needs. Maybe over 15 years he's convinced himself that he is the reasonable one, and he needs a reality check that most people do not approve of his actions.
Yet, I can’t help thinking that this is a stunt that will generate a lot of notoriety, and instead raising awareness, it will just raise a lot of self-righteousness as people say to themselves, “Look at that horrible schmuck. Thank God I’m not a terrible bully like him!” While most people aren’t bullies, many people do harbor some pretty awful ideas about disabled people. The difference is that they are self-controlled and smart enough to keep their own behavior in check.
Which leads me to another thought. Doesn’t it seem likely that Mr. Aviv is at least a little bit mentally ill? Nothing in the article suggests he or his lawyer brought that up, but I wonder. I keep coming back to the fact that his acts were not just mean, they were bizarre. So were his apparent motivations … like smells from a dryer. Is this a guy who just can’t function in close proximity to other people? Does he imagine a thousand slights and impingements that aren’t really there? I’m glad the judge also sentenced him to anger management classes, though as I say, a psychological evaluation might be a good idea as well.
I don’t know. Maybe the guy is a racist, ableist misanthrope who just couldn’t stand having a large, possibly noisy and active family next door. On the other hand, when I worked at the CIL, I knew people with certain mental health diagnoses who at their core were decent people, but because of sensory issues combined with garbled thinking, had a terrible time living in an apartment where people were constantly coming and going and talking with each other. I’m talking about people who I wished I had the resources to just move them to a nice cabin in the woods, where nobody would bother them. The article says that the family next door didn’t have the money to move away from their abusive neighbor. Maybe he didn’t have the money to move away from them, either.
Finally, I wonder how things will between Mr. Aviv and the Prugh family after his sentence is complete. My wild guess is that there will be Order of Protection sometime in the near future, because I doubt that Aviv is going to learn any meaningful lesson from holding his sign.
Sunday, April 13, 2014
"Serfdom"
The Editorial Baord, The New York Times - April 11, 2014
The New York Times has followed up its very good article on the Justice Department’s agreement with Rhode Island on changing the practice of Sheltered Workshops and Day Programs, with an even better Editorial in support of it.
If nothing else, the Editorial should be treasured for describing segregated employment and service programs for intellectually disabled people as “serfdom”. As a history buff, I don’t really think “serfdom” is an accurate description, but it’s close enough and it is emotionally, if not technically accurate. It is especially apt since serfdom, though not quite slavery, did basically trap people in jobs decided by others. It was also underpinned by an assumption that serfs’ occupations were their natural lot, and it was legitimized by a veneer of benevolence. Serfs were to be grateful for being taken care of by their lords who were supposed to be responsible for them, not just exploit them.
People who defend Sheltered Workshops usually use a combination of one or more of the following arguments:
- Sheltered Workshops provide a job-like experience, and a little pocket money, for people whose disabilities are so severe that they could never make it in a “real” job, so it is better than sitting idle at home. Part of this argument is that those who despise Sheltered Workshops just don’t understand how disabled these people are. This may actually be true, to some extent. On the other hand, the same kind of argument has been made numerous times to justify slavery, serfdom, and other exploitative models. "If you knew what wretches these people are, you wouldn’t turn your nose up” the argument goes.
- Workers in these programs are often paid less than Minimum Wage because they aren’t as productive as “normal” workers, and their pay is calibrated to reflect their actual productivity. It is argued that paying everyone Minimum Wage, even those with extremely low productivity, would make the model unsustainable.
- Ending the practice will result in people being worse off … without any kind of job, no earnings at all, and disruptive lives for people for whom disruption of routines is especially harmful. Of course, there are better ways of accomplishing the same goals. But, even worthwhile revolutions are hard. They are sometimes also necessary.
It may be worth noting that historically, the end of serfdom led for most serfs to systems that were only barely improvements … such as sharecropping and factory labor, which brought a slight increase in income, but arguably less security.
But, would we really trade back? Freedom can be rough and it offers few promises, but most people choose it when they can. I find it interesting that free-market conservatives and capitalists tend to defend Sheltered Workshops, when they take a moment to think about it. You would think that they would champion the idea of self-reliance. But that fails to account for ableism. The key here is that these aren’t “regular” people … they are disabled, and intellectually disabled to boot … so the normal rules and values don’t apply. A "nanny state" is, apparently, fine for cripples, even if it anathema for everyone else.
Part of the problem is that the abilities of just about all disabled people tend to be underestimated. Also, Sheltered Workshops have always been a convenient landing place for disabled people, used by disability professionals and even families when they can’t imagine any better outcomes. Finally, there’s plain inertia. It’s just easier to keep doing the same thing than to try “new” models.
As I have noted before, better ways exist and are hardly “new”. It is truly encouraging that some real movement may just be ahead to end this “serfdom” decisively.
Weekly Wrap-Up
Sunday, April 6, 2014
Monday, April 7, 2014
Tuesday, April 8, 2014
Wednesday, April 9, 2014
Thursday, April 10, 2014
Friday, April 11, 2014
Saturday, April 12, 2014
Saturday, April 12, 2014
In Lieu Of Actual Blogging ...
No blogging today. Spring is really here, and I’m planning to enjoy it.
I’m not usually a fan of band reunions, and the last one I would have expected is The Stone Roses, but this is pretty impressive.
Friday, April 11, 2014
Process Note
I just re-posted my blog post from yesterday, The Airport Analogy. I found that the post was twice as effective, I think, by cutting out whole chunks of it … about 1/3 of the whole in fact. It has me thinking that I should try to institute a routine where on the longer pieces, I write them one day, set them aside, and edit the next day before posting. Short pieces like this I can do on the fly, but the stuff I really care about usually can be improved if allowed to sit overnight.
Another Analogy ...
Dave Hingsburger, Rolling Around In My Head - March 5, 2012
A comment on yesterday’s “The Airport Analogy” post included a link to another disability analogy I really like. Dave Hingsburger suggests trying to write a coherent paragraph without using the letter “e”. It is a good approximation of the mental intensity required to live with physical or mental disabilities. I particularly like this line.
"Disability isn't about not having a cut curb ... well it is but it isn't ... it's about figuring out what to do about the fact that there isn't a cut curb.”
I really think that a good analogy for disability is a precious thing. We should be collecting them.
Thursday, April 10, 2014
Best Article On "Autism Awareness"
Amy Sequenzia, Ollibean.com - April 1, 2014
I have read many great articles and blog posts explaining how Autism is misunderstood, how Autism Awareness is misconstrued, and how a prominent organization like Autism Speaks can come to be viewed as the enemy by the people it purports to serve. This article does the best job at all of it that I have ever seen. It’s not just a specific set of policy disagreements … though a few key changes would make a big difference. It is really a whole different paradigm. At a certain point, I think people are either going to “get it” or they won’t. But first they have to be introduced to the different paradigm. Amy Sequenzia’s post is a good start. Here is another one, which I recommended last month.
Photo Of The Day ... And A Thought
I usually don’t like captions with disability photos, but this is a good one:
"MY WHEELCHAIR AND I ARE FEELING HELLA CUTE TODAY"
"My wheelchair and I... " This is the kind of thing that makes nonsense out of the idea that wheelchairs, canes, walkers, and the like are bad things ... that everyone who uses them are "confined", and want nothing more than to escape from them and discard them one day. It's so much more complicated, subtle, and varied a relationship than that.
"My wheelchair and I... " This is the kind of thing that makes nonsense out of the idea that wheelchairs, canes, walkers, and the like are bad things ... that everyone who uses them are "confined", and want nothing more than to escape from them and discard them one day. It's so much more complicated, subtle, and varied a relationship than that.
The Airport Analogy
The best known attempt to explain disability to non-disabled people is probably The Spoon Theory which describes chronic illness … and arguably disability ... as an exercise in careful energy conservation with limited resources. In the story, a woman with chronic illness uses a bundle of spoons to illustrate the idea of stamina being in such limited supply that you constantly have to make agonizing choices about what to “spend” them on, because there is never enough energy a.k.a. “spoons” to get through a typical day. What will fall by the wayside today? If I cook a full, nutritious meal, will I be too tired to benefit from it? If I attend a family birthday, will I spend the next day in bed?
I love the “Spoon Theory”, but I would like to suggest another analogy to help non-disabled people understand what it is like to live with a physical disability or chronic illness. I call it the "Airport Analogy”. Because, when you have a physical disability or chronic illness, every day feels like a day of air travel.
Air travel is this weird combination of physical exertion, idleness, boredom, panic, and bursts of intense mental frustration. Meanwhile, everyone is judging you, and you are judging everyone else, too.
Air travel is empowering … New York to Los Angeles in less than a day! Air travel is also utterly humiliating. The people you have paid hundreds of dollars to serve you, treat you like cattle, and speak to you like you’re a five year old. At the end, you have accomplished something extraordinary, yet at the same time somehow mundane and exhausting.
Most days with a disability are like this, no matter where we are or what we are doing. When you have a disability, every day is like a day of air travel.
Both disability and air travel are physically tiring. Both are also mentally exhausting. Some days, air travel isn’t so bad, when things go right. Other times, it’s terrible … usually due to a toxic mix of organizational failures and individual stupidity and insensitivity. Life with a disability is like that, too. There are good days and bad days, and you can rarely predict them. There is the strain of trying to remain calm and civil, when you just want to scream at people. There is the feeling of being subjected to surface pleasantries that turn out to be paper thin. There is the feeling of being herded around like so much furniture for the sake of other peoples’ convenience, even though the whole purpose of their work is to serve you. And being spoken to as if you are a possibly unstable child. In disability as in air travel, the customer is often wrong, and the provider is boss.
On the other hand …
As bad as both disability and air travel can be … people go through them all the time.
Some people travel by air a lot, a few nearly every day. Think business travelers. They learn coping strategies. They pack light. They buy rolling suitcases. They know the best times to arrive and where to park. They can find the best place to get a coffee in like 20 different airports. They know which airlines have the best customer service, which ones are good in a crisis. They develop effective negotiating skills. Some of them even develop thicker skin, so they are less bothered by stuff. They actually learn to appreciate some aspects of the experience … turning negatives into positives and taking pleasures where they can find them. Some come to enjoy their travel time, even if it’s still tiring and sometimes frustrating. It becomes part of their routine, part of who they are.
It’s much the same with disability. A non-disabled person can get a sense of the difficulty of living with a disability, through analogies like the "Spoon Theory" and maybe this "Airport Analogy”. But, it is a mistake to evaluate either disability or air travel by the limited and disadvantaged perspective of the inexperienced participant. Once-a-year vacationers tend to have a much worse experience with air travel than regular business fliers. Likewise, as many have pointed out, “wheelchair for a day” events and brief blindfold experiments can make disability seem much worse than it is for most of us, because if we have been disabled for more than a couple of years, we have learned the ropes.
I really think that the “Airport Analogy” could be a useful tool for better understanding. A lot of people can relate to air travel, and like disability itself, it has both negatives and positives.
What do you think? Does the “Airport Analogy” work for you? Or, do you have another idea to make life with a disability easier for non-disabled people to comprehend?
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