Captain Pike's Weird Dilemma

/
Man with facial scarring, showing head and upper torso, the rest of his body obscured by an encasing wheelchair with lights and buttons on the front
One of these days soon, I’m going to have to do a blog post, podcast discussion, or both about the Star Trek two-part episode The Menagerie. It’s one of the most memorable of the original series episodes, but also one of the most bizarre, especially its depiction of the severely disabled Captain Christopher Pike. For one thing, the show depicts a level of far future high-tech adaptation that has already been surpassed in real life. Then there are the ideas about disability that drive the plot. It’s all based on the assumption that even in the 22nd century, physical disability is just about the worst thing that can happen to someone. Yet, there are small moments and details that nod towards Captain Pike retaining some agency in the world, despite appearing to be an inert lump of flesh that can only say "yes" or "no".

The Menagerie is weird viewing to begin with. For someone familiar with disability issues, it’s doubly hard to untangle, but kind of compelling.

 ----------

Facebook

Disability Blogger Link-Up

/
The word Blog surrounded by word cloud

Time to "spring forward". But first, here

’

s this weekend's Disability Blogger Link-Up!

Use the contraption below to post a blog post or article on something related to disability 

…

 something you want others to read.

To make the articles easier to browse, in the “Your name

” blank, type the title of the article. 

In the "Your URL" blank, paste the whole website address of the thing you are posting.

Then click the "Enter" button. That's it!

If your post doesn't appear immediately, try "refreshing" the page a few times. Sometimes it takes a little while to show up. Also, feel free to post more than one item. Finally, you might want to add a comment at the bottom of this post, to identify yourself or add an explanation or comment about the items you are posting.

Have fun posting and reading! This Link-Up will close at Midnight Eastern on Sunday.

The Politics and Policy of Home Care

/
The word Advocacy on a page being highlighted by a green highlighter pen
Jane Hash, The Mobility Resource - February 28, 2015

I’m sure there are all kinds of quasi-budgetary, quasi-reform proposals currently meddling with generally functional home care systems in other states. I’m blogging on what’s happening in Ohio for two reasons.

One, I’ve been reading Tweets about home care in Ohio for months now, maybe a year. Two, this is the first full explanation of the issues I have seen so far. Three, it’s written by Jane Hash, who I met virtually when she discussed American Horror Story: Freak Show with me on my Disability.TV podcast.

It still amazes me that there aren’t more Republican politicians who buy into consumer-directed models of home care. It’s less bureaucratic, it relies on lots of individual responsibility, and, more cynically, consumer direction has an uneasy relationship with unionized nursing. It shouldn’t, but it does.

Of course, the sticking point is that it involves taxpayer money, comparatively large amounts of it, essentially being given, directly or indirectly, to low-income severely disabled people to manage home care for themselves. Personal responsibility may be a cherished value of conservatism, but giving poor people lots of money and services is definitely not.

I am curious about the issue of the alternative program mentioned, which would, apparently, make consumers the “employer of record”. In one sense, this sounds like a reaffirmation of consumer control. On the other hand, it makes it an all-or-nothing proposition … either you take ALL responsibility on yourself, or you give up all of it to a home care agency.

In New York State, where I live, consumer-directed home care typically involves non-profit agencies that act as “fiscal intermediary”. They don’t decide who to hire and fire, and they don’t train the workers. The consumers do that. But the agencies pay the taxes, cut the paychecks, and even provide decent health insurance to the workers, still at a lower cost and slightly better pay to the workers.

All of this aside, it seems like a bad idea to shake things up too often, even if it’s to implement possibly good ideas. Home care is an extremely delicate, intimate thing. If you’re able to find the right workers and create a healthy, functional system for your care, you don’t need loads of bright ideas imposed on you whenever its budget time again.

 ----------

Facebook

Followup: 2015 Day Of Mourning

/
Alice Wong, Disability Visibility Project - March 3, 2015

This address by Alice Wong, at one of Sunday’s Day Of Mourning 2015 events, is heartbreaking and empowering all at the same time. It’s always tricky to imply, “My life is pretty great so yours can be, too,” but we’re talking about life and death here. Those three kids weren’t allowed to even try.

I still don’t have much appetite for punishment. But the contrast between what life with even the most “severe” disabilities can be, and how hopeless these killers and the news media just assume it is, shows just how far apart and confused we still are about the nature of disability. It’s a vital reminder to the disability community that “disability awareness”, so easily trivialized, really is important. Somehow, we’ve got to penetrate the brick wall between people with disabilities who are happy and glad to be here, and the parents, professionals, and news media who think disability equals suffering and hopelessness.

Lives literally depend on it.

 ----------

Facebook

Old Timey People

/
Word cloud around the large print word "History"
Were the “old days” really as terrible for disabled people as we tend to think? Were people back then just grossly ignorant and callous about disability? Or, is that an assumption we make, or a useful conceit to help people today feel superior?

If you go back far enough in history, I’m sure you can find eras where most people really did think you could “catch" cognitive impairment, that a club foot was a punishment for the sins of great-grandparents, or that blind people were psychic. But we tend to talk about more recent history as if only 2 or 3 generations ago, people's beliefs about disability were universally medieval, and that’s why we had asylums, forced sterilization, and ugly laws.

I think that maybe institutions, laws, and taboos were a lot more terrible than they are today. I’m not sure people were that much worse though. As with slavery, there must have been non-trivial percentages of people in, say, the 1910s who didn’t buy disgusting ideas about disability any more than we do today. If that’s true, it seems unfair to forget about them. On the other hand, one wonders, then, why more people didn’t object when the rest of society was treating disabled people like crap.

 ----------

Facebook

2015 Day Of Mourning

/
Day of mourning 2015: Remembering People with Disabilities Murdered by Caregivers
I can't speak for the organizers, but it seems to me that what this event isn't about is as important as what it is:

 It isn't about saying that caregivers who kill are monsters.

 It isn't about demonizing "special needs parents".

 It isn't primarily about punishing the killers more harshly.

 It is about accountability for crimes.

 It is about ending a double standard ... acquittals and lighter sentences when the victims are disabled.

 It is about changing the media narrative that reverses the roles of victim and victimizer.

 It is about fighting the popular perception that caring for disabled people is some kind of hell.

 It is about remembering the people we've lost, who are too often forgotten.

 Please take part however you can, and we’ll all remember together.

Autistic Self-Advocacy Network

Savannah Nicole Logsdon-Breakstone

Autistic Self-Advocacy Network

David Perry, How Did We Get Into This Mess? - February 28, 2015

 ----------

Facebook