I'm done talking about Sarah Palin soon, I promise, but I do need to share this.

The one moment in last night's speech that caught me off guard was this one:

To the families of special-needs children all across this country, I have a message: For years, you sought to make America a more welcoming place for your sons and daughters. I pledge to you that if we are elected, you will have a friend and advocate in the White House.

As she said it, I felt something I hadn't expected to feel during her speech --- a sense of being reached out to, a sense of community. That was a surprise, and a welcome one.

As I read over that passage this morning, though, I noticed things I didn't notice last night. "the families of special needs children." A "more welcoming place for your sons and daughters." My family is the family of a person with a serious cognitive disability, but that person is not my daughter, and she is not a child. She is my sister. She is my daughters' aunt. She is my wife's sister-in-law. She is a friend. A colleague. A woman.

The day came nearly two decades ago when my sister was no longer a child. The day will come when she no longer has a father or a mother. But our family didn't stop fighting to help her carve out a place for herself in this country when that first day came, and it won't stop when the second one does. That is the reality facing my family, and Palin's own.

It may be churlish of me to pick apart Palin's phrasing like this --- she has been the mother of a child with a disability for only four and a half months, and it's not so strange, given what she's been dealing with this year, that she would think of the families of people with disabilities primarily as the parents of children with problems.

But I see that Palin slashed outlays for schools for children with disabilities in her most recent budget, and that she used her line-item veto to cut funding for computer and library equipment for the Alaska Brain Injury Network, for a new van and some furniture for a juvenile mental health services facility, for a sports program for disabled veterans, and for ADA compliance at the Alaska state fair. If she has been an advocate for people with disabilities and their families --- their parents or their siblings or their children --- as governor, it's not immediately apparent in her budgetary choices.

Marc Schmitt writes this morning that his "least favorite trait in modern conservatism" is "the carving out of a sympathetic exception for the single family need or health problem that you have personal experience with." These days, he says, every Republican "has his or her little platform issue ... that shows their soft side between bouts of "cutting taxes and slashing Medicaid. The lesson in having a child with special needs" isn't, he says, that "we need more attention for kids with special needs." It's that "life hands out lots of difficult circumstances and lots of families need different kinds of help, so we're all in it together."

What he said.

Tags: disability, politics

A bunch of my friends have put up great pieces for Blogging Against Disablism Day today. Really great pieces. Y'all should head over to the BADD main page if you get the chance, and poke through everything that's going up, but if you don't get the chance here's a taste of what my friendslist has brought me so far today:

Tigtog of Hoyden About Town came out as a person with a disability, and inspired a bunch of folks to share their own stories in comments.

lauredhel, of LJ and Hoyden About Town, noted the underrepresentation of people with disabilities in the Australia 2020 Summit (six out of a thousand participants), and the resultant botch of disability issues in that group's initial report. (Lauredhel is a frequent and eloquent blogger on disability issues --- check out her LJ for much more.)

I couldn't get my act together to do more than reprint a post from two years ago about the presumption of literacy, but I'm making up for that laziness right now.

oddprofessor put up a great, long intro to issues relating to deafness and Deafness, from the perspective of a hearing person who's been working in the Deaf community for three decades.

willendorf5761 posted a dispatch from the Ladies Auxiliary of the Gimp Militia, and, later, a short heartbreaking story about blithe disregard for accessibility from people who really should know better.

ptomblin_lj wrote about his harrowing experience with chronic pain, and about the insights it has given him into disability (even as he doubts whether his experience qualifies him as disabled).

All that, and it's not even two o'clock yet. I'll update this post later if more comes in.

Update: I haven't read lignamorren's piece yet, because Casey is insisting I give her a chess rematch. But check it out anyway.

Tags: disability

My sister can't read.

Her disability usually isn't obvious when you meet her. And when she's home visiting my parents, she spends a fair amount of time out in the city on her own. She takes the bus, she shops, she goes to restaurants. She gets her nails done.

My dad gives her her walking-around money as five-dollar bills to limit how much she can lose if someone decides to cheat her when giving change.

But like I say, mostly her disability is invisible. And when folks do notice, they're usually cool about it.

(I remember once, years ago, I was out with L and we got into some sort of awkward situation. I wanted to explain to the woman we were inconveniencing, and so I said "she's..." And then I wasn't sure how to finish the sentence. The woman said "a little slow." It wasn't a phrase I'd ever use myself, and I cringe a little typing it, but she said it with love, and when she said it I felt myself unclench. We were among friends.)

But here's something I wish I could tell everyone in the city: Not everyone can read.

I see it at least once a month, when I'm out and around. Someone on the subway or the street or in a shop will ask a question. "Is this the 14th Street stop?" "How much is a Big Mac?" "What kind of iced tea do you have?" Usually, whoever's asked will answer appropriately, but too often they'll glance up and say "read the sign."


My sister will take a menu when she's offered it. But she can't read.

She'll flip through a magazine when she's bored. But she can't read.

She has a library card. But she can't read.

She's 32 years old, and she looks like any other 32-year-old on the subway. But she can't read.


My sister is good at keeping her disability to herself. She likes keeping her disability to herself. When she's out on the street, away from all of us who know and love and worry about her, she's just another New Yorker. But every once in a while, she could use a little help maintaining her public face.

As we all could.

Today is Blogging Against Disablism Day, and you can read. Go read.


(I wrote this post for the first Blogging Against Disablism Day in 2006. Today is Blogging Against Disablism Day 2008. I've updated the URL, but otherwise left the post unchanged.)

Tags: disability, essays, family

Criticized for describing animal breeding as "slavery," Elaine Vigneault comes back with this:

The only difference between a mentally disabled human and a cow is that one is my species and one is not.

Look. I'm sympathetic to the pro-animal cause. I've been trending in that direction intellectually over time, and I've recognized recently that I really should do more to bring my actions into line with my abstract beliefs.

But even in circumstances where the moral and historical parallels are strong, equating different oppressions is a dicey business. Even if you've done all your homework and you've tailored your arguments narrowly, you're going to catch flak. If you haven't done that --- if you just toss out an analogy to appropriate some heft --- you're going to get slammed, and you're going to deserve it.

There is no good ending to a sentence that begins with the words "The only difference between a mentally disabled human and a cow is..." Not any. If you ever find yourself typing such a sentence, make a beeline for the delete key. Press it and hold it down until the impulse passes.

You'll thank me later.

Tags: disability, politics, race

Kind of a weak article in the Times this morning on a fascinating topic --- voting rights for people with severe cognitive disabilities.

The article opens by describing a current dispute in Rhode Island that demonstrates the potential popular appeal of measures to deny the vote to people with certain cognitive impairments. It involves two murderers, each of whom received a "not guilty by reason of insanity" verdict at trial, and each of whom is currently institutionalized. Both would be barred from voting under Rhode Island law if they had been convicted of the murders they committed, and I'll concede that it does seem a little counterintuitive that the fact of their mental illness should be the circumstance that protects their vote. (The voting rights of felons themselves is a topic for another post.)

But advocates for the men make a compelling case that the act of voting is a valuable part of their treatment and a step in the process of reintegrating them into the world. And a local election official's take on the case shows how broadly an adverse precedent could be applied, saying that "if you are declared insane you should not be allowed to vote, period." He continues, "Is insanity a disability? I have an answer to that: no. You’re insane; you’re nuts."

The Times article makes prominent reference to the "risks" of voting by people with cognitive disabilities, but the only examples of such risks it offers are cases in which it was charged that absentee ballots were filed fraudulently on behalf of nursing home residents. And such abuse does not require an "incompetent" voter, as the article contends --- just a nursing home staffer willing to defraud the elderly by submitting illegitimate absentee ballots in their names.

Near the end of the piece, a Columbia psychiatry professor named Paul Appelbaum is quoted saying that "to fail to have any standard that requires a person to have a grasp of what the process is all about would degrade the voting process." This makes me bridle for three reasons.

First, his use of the conditional mood ("would degrade") suggests that we currently do have such a standard, and that there's a danger in eliminating it. Given that Appelbaum is an advocate of subjecting Alzheimer's patients who wish to continue voting to testing not currently mandated by law, this is a tendentious misrepresentation of the current state of voting rights.

Second, the idea of a "standard that requires a person to have a grasp of what the process is all about" brings to my mind the infamous voter literacy tests of the Jim Crow era. Such tests were never applied uniformly or fairly, and their very existence was --- like the tests that Appelbaum wishes to impose on Alzheimer's patients --- a violation of the principle that all citizens are presumptively entitled to vote.

Finally, Appelbaum's role in this process itself concerns me. Health care professionals should not be forced to serve as gatekeepers for the franchise, and Appelbaum's eagerness to perform that function does not mitigate the impropriety of imposing it on other doctors.

New Jersey's state constitution presently includes a 1789 clause declaring that "No idiot or insane person shall enjoy the right of suffrage." A proposal before the state legislature would bring the wording of the constitution into accordance with state case law by replacing the phrase "idiot or insane person" with "person who has been adjudicated by a court of competent jurisdiction to lack the capacity to understand the act of voting."

This approach is, it seems to me, the right one. It is narrowly tailored to the specific competency requirements involved in the exercise of the franchise, it considers the question of voter competency on a case-by-case basis, and it places the question of eligibility in the hands of the courts, rather than those of doctors or local election officials.

Tags: aging, disability, essays, history, politics

Damnit. I can't believe I missed the boat so badly with that Ebert post. The perfect title was staring me in the face, and I didn't see it:

This is his happening, and it freaks us out!

Sheesh.

Tags: disability, pop culture

This one from jupiter9, on rape prevention, and this one, from lauredhel, on accessibility issues for people with invisible disabilities.

Tags: disability, gender

This is what Roger Ebert looks like these days.

Ebert was diagnosed with cancer of the salivary gland a while back, cancer that ultimately spread to his jaw. A portion of the jaw was surgically removed, and so far two surgeries to replace the lost bone have been unsuccessful.

He hosts an annual film festival at the University of Illinois, and this year's festival was last week. Ebert says a lot of well-meaning people discouraged him from attending, but he went anyway. Here's why, in his own words:

I have been very sick, am getting better and this is how it looks. I still have my brain and my typing fingers.

Although months in bed after the bleeding episodes caused a lack of strength and co-ordination, the Rehabilitation Institute of Chicago restored my ability to walk on my own, climb stairs, etc. I no longer use a walker much and the wheelchair is more for occasional speed and comfort than need. Just today we went for a long stroll in Lincoln Park.

We spend too much time hiding illness. There is an assumption that I must always look the same. I hope to look better than I look now. But I’m not going to miss my Festival.

Good for you, Roger.

There's still a tremendous stigma attached to making disability visible, and because it's usually not visible, folks often manage to forget that it exists at all. I've written about this in connection with my sister's illiteracy, and just a couple of days ago Rob Rummel-Hudson described an incident in which a woman yelled at his congenitally mute daughter on the playground for not answering when she spoke to her. (Schuyler held out her Medic-Alert bracelet to the woman during the tirade, but the woman didn't understand why.)

Ebert did what was right for him, and that's enough. But he also intended, clearly, to do something bigger. Good for him.

Tags: disability, pop culture

From My Beloved Monster and Me:

Today, it suddenly became clear once again why we were correct not to have such a test administered to Schuyler, and why we likely never will. Today, I heard the story of Misty Cargill, a young woman who goes to a job and has a boyfriend who takes her to the movies and who bowls in a league and who can't get a life-saving procedure because someone somewhere has decided that she's retarded, and retards don't deserve to live as much as the rest of us.

Read the rest, if you like.

Tags: disability, parenting

The first Disability Blog Carnival is live, over at the Temple University Disability Studies blog. There's a huge amount of great-looking stuff up.

I'll post links to specific entries as I work my way through, but really, go read for yourself. If you feel so moved, you could even comment here with a recommendation or two of your own...

Tags: disability