Monday, September 29, 2008

The Medical Profession’s Charlie Rangel: Dr. Jacques Abramowicz on Down Syndrome

Sometimes it would be better if people in the medical profession, in their own best interests, just made a good decision to keep their mouth shut, however well intentioned their comments.

A major piece on Down Syndrome in yesterday’s Chicago Tribune reported on the push by advocates for people with DS to get out the word that a DS diagnosis isn’t some kind of ghastly living death sentence.

Why should this be necessary?

Because the overwhelming majority of DS diagnoses result in termination of the pregnancy. While hard figures vary a bit, terminations are somewhere around 85-90% of those diagnosed.

Because there is evidence that in most cases, medical counseling post-diagnosis is overwhelmingly negative. While hard evidence is fairly sparse, parents of children with DS report strong medical bias against birthing the DS child.

It’s a fair bet that most expectant parents aren’t up on what DS is or what it means when they receive the DS news. What they most need is a realistic and balanced picture.

The usually don’t get that. They’re much more likely to get the awful without the good. No wonder most elect termination.

Want some proof of how many in the medical community perceive DS?

Here’s Dr. Foot-in-my-mouth as quoted in the Tribune story:

. . . some doctors, including Dr. Jacques Abramowicz, co-director of fetal and neonatal medicine at Rush University Medical Center, caution against providing a picture of the disorder that is "too rosy."

"Whenever something like this is in the media, there is the tendency to make it appear much more beautiful than it is in reality," Abramowicz said. . .

"It is extremely difficult to have a baby with Down syndrome," he said.

Where to start?

First, it’s refreshing to see that MDs can be ignorant, too.

Second: Nobody’s asking for a “rosy” prognosis. How about we begin with balanced, shall we?

Three: OK, Dr. Abramowicz thinks the reality of DS is not as “beautiful” as supposedly portrayed in the media. Well, if anything, it’s this kind of patronizing pabulum that deceives people into believing that those with DS are the walking dead.

Four: Difficult having a baby with DS? 

Oh, yes, I see. 

Have a kid with DS = a very difficult life. 

Have a kid without DS = a wonderful, carefree life.

Yeah, right.

Wednesday, September 24, 2008

Dolts x 2: Charlie Rangel and Saturday Night Live

Two events in the last few days make it clear that we have a lot of work to do in educating people, even very prominent and powerful people, who should know better, about disability issues.

First, Representative Charles Rangel (NY), in an interview with a New York radio station called Sarah Palin disabled:

"Why are the Democrats so afraid of Palin and her popularity?”

"You got to be kind to the disabled," Rangel said.

CBS 2 HD: "You got to be kind to the disabled?"

Rangel: "Yes."

CBS 2 HD: "She's disabled?"

Rangel: "There's no question about it politically. It's a nightmare to think that a person's foreign policy is based on their ability to look at Russia from where they live."

Third time lucky, I suppose.

I don’t know if Rangel just slipped up or if he really meant that Palin was disabled. (He later backtracked quite a bit).

However, what bothers me is that even if he meant to use the term disabled to describe Palin’s lack of foreign policy knowledge, he meant it as an epithet denoting inferiority.

Ergo, disabled means inferior.

Rangel never took that part back.

Rangel made it even worse by observing that we need to be kind to disabled people.

Good move, Charlie: We should look upon “disabled people” benevolently, give them a good-natured pat on the head, and send them off to wherever these curiosities are housed. And, all the while, of course, congratulating ourselves on how kind and sensitive we are to “the disabled.”

How utterly, excruciatingly, patronizing.

Second, was the Saturday Night Live skit about disability that insulted the disability community for cheap laughs and ratings. I’m happy to report that the audience obviously was more sensitive than the writers, as the skit pretty much bombed.

Nevertheless, the skit made the point that Trig had Down Syndrome because of Todd Palin’s incestuous relations with his daughters.

Yeah, real funny.

Here’s what SNL really said to the largest US minority, albeit tongue in cheek:

You are disabled because your parents are perverts.

So much for having come so far in recognizing the rights and inclusion of Americans with disabilities.

Friday, September 19, 2008

Disability as Death Sentence in Nepal

I’ve talked before about cultural aspects of disability.

Some cultures view disability as just another characteristic on the continuum of human diversity. Other cultures, unfortunately, view any form of disability as negative and something to be avoided.

I’ve also addressed the idea that for many people with disabilities, where they happen to live can often be the difference between getting all kinds of help and advocacy and other places where, exclusively because of their disability, they are ignored, oppressed, abused, and yes, even killed.

The grim list of horrors is almost endless.

When cultural prejudice and a hostile geographical location intersect, having a disability can be a death sentence.

Like in Nepal.

Nepalese with disabilities are below the bottom of the social pecking order. They are abused, ostracized, neglected, segregated.

I could try to tell you their story, but, instead, want you to listen to the story of Ramah, and others, whose existence literally depends on the kindness of strangers.

Deborah Strong works in Nepal. She lives in Katmandu. She moves among Nepal’s citizens in villages, towns, and deep in the jungle.

It was Deborah who, several years ago, saved Ramah from certain death, from a murder planned simply to rid the village of someone with a disability.

Disability in Nepal, out of sight, out of mind.

Let’s start to change that.

Monday, September 15, 2008

Why the Palin Disability Debate is Misguided

I’ve said it before, I’ll say it again: I really don’t care which political party Sarah Palin calls home.

I’ll also reiterate this: I am very interested in what people in powerful and influential positions (and those about to assume those positions) have to say about disability issues.

The blogosphere has had a lot to say about Sarah Palin and her youngest, Trig, who has Down Syndrome. However, there’s been way more heat than light, which, I suppose, was predictable, if no less frustrating.

Essentially, everyone seems to have focused on two issues: One: That Palin decided to birth Trig even after the DS was diagnosed. Two: That she made a point in her acceptance speech at the Republican National Convention that, if elected, she would be an advocate for people with disabilities.

Republicans took Palin’s birth decision and her comments as proof of her absolute pro-life credentials and that she would, they hoped, carry that pro-life credential to aid their cause when elected.

Democrats jumped to other conclusions. They saw Trig’s birth as a shot across the bow at pro-choice voters and that her mention of disability advocacy was a cynical attempt to sway the country’s largest voting majority: people with disabilities.

And so it goes. Disability as political football.

And it completely misses the point.

Everyone is so intent on blaming the other side or defending their side, that, as usual, the true, crucial, and very pressing issues that the disability community still faces in this country are, once again, marginalized.

The more I learn, the more I’m convinced of a couple of things:

First, advocacy with, and on behalf of people with disabilities is dangerously fragmented by all sides that get sidetracked with things like party affiliation and a host of other distracters (for example, gender issues, ideological red herrings, decidedly unpragmatic approaches to solving problems, etc.).

Second, these distracters quickly overwhelm the original focus of what actually matters most – the disability issue, pure and simple.

Third, is the amazing inability or unwillingness of many disability advocates to talk to each other, agree on what they can, put aside that which they cannot, and rigorously focus on the disability angle alone.

I don’t care if, as someone who wants to advocate with or on behalf of disability issues, you are Independent, Democrat, or Republican. Or whether you are an atheist, Muslim, or Christian. Or you are (fill in the blank).

You get the picture.

I’m not suggesting that a raft of other, extraneous factors don’t impinge on how we advocate for people with disabilities.

Let’s just try, shall we, to make them the background, and disability, and disability only, as the foreground?

Thursday, September 4, 2008

Cindy McCain Refutes Ethnicity as a Disability

As readers of the blog know, I’m African.

I’ve had my detractors, since moving to the US, about whether I can even make that claim.

Most bizarre, perhaps, were the charges by people, who should know better, that I couldn’t possibly identify myself as African because, as my photo attests, I’m white. I’ll note for the record that these detractors were not of my ethnic identity, not of my culture. They were American, and had never graced the shores of my beloved African continent.

I’ll note further, that in sharing this bizarre state of affairs, my African brethren, informed of my American colleagues’ epithets, were, above all, amused.

I told my story to a prominent national community leader in Zambia. He listened quietly and respectfully, as is the African way. When I was done, he asked me a question that healed my heart: “If you are white, and cannot be African, is it also the case that that, if you are black, you cannot be American?”

In a Johannesburg craft market, I shared the same story with a Congolese trader. He looked at me for many, quite uncomfortable seconds, eyes growing ever wider. Then, as is the African wont, he burst out laughing, shook his head, and told me that my story was so implausible that I must surely be making it up. Assured that I wasn’t, he shook his head and said, “I am sorry, my brother.”

Enough said.

I was reminded of this issue listening to Cindy McCain a few minutes ago, because she talked about Rwanda, and about Rwanda’s suffering in the genocide of 1994.

In 1994’s Rwanda, tribal identity was a lethal, and official disability: Hutu, you live. Tutsi, you die.

Cindy McCain acknowledged a guest in the audience, Ernestine, of Rwanda, a woman who had survived the genocide, and who works for healing and reconciliation, in spite of her painful past.

Making difference a disability is never right. Making disability a difference is no better.

Sarah Palin Scores for the Disability Community

As I mentioned in an op-ed several months ago, the disability community has been terribly frustrated about how they have been studiously ignored by both major parties in this election cycle.

A big mistake, I think, seeing that people with disabilities are far and away the largest minority and special interest group in America.

Well, last night changed the picture dramatically.

Republican vice presidential nominee Sarah Palin put both her supporters and detractors on notice that people with disabilities would no longer be ignored in civic life.

Palin chose not to genetically discriminate against her unborn Down Syndrome child, Trig.

She chose to show him off (proud mom that she is) along with her other children.

She faced the camera squarely and said what no other politician on either side of the aisle has, so far, been willing or able to say: That all people with disabilities matter, that they will no longer be ignored. That they have a rightful and unmistakable place at the table of civic life.

That they are, before anything else, Americans.

Tuesday, September 2, 2008

End Discrimination Against People with Down Syndrome - Now

I really don’t care what new Republican Vice-presidential candidate Sarah Palin’s political views are.

But here’s what I do care very much about: She refused to discriminate against her unborn child when the Down Syndrome diagnosis came in.

As a society, we prattle on and on about equality, diversity, and "access.” The notion of inclusiveness-everything rules the day. Well, almost everything - as long as we’re not talking about people with an extra chromosome.

The evidence is irrefutable that those with Down Syndrome have been deliberately left out. When Down Syndrome is thrown into the equation, suddenly our high-mindedness sags. Inexcusably, I think.

For years advocates fought to have people with Down Syndrome brought from the shadows of institutionalization to their rightful place in our communities and lives.

Lately, though, there are fewer and fewer of them around.

Why? Because the vast majority of in-utero Down Syndrome diagnoses result in abortion. The numbers don’t lie: When it comes to people with Down Syndrome, they’re considered defective.

The message is clear - we’d rather just not have them around.

Good for Palin for standing up to the pressure from the medical community, which almost always recommends termination of the pregnancy.

Good for Palin for making the statement that needs to be made much more often:

Genetic discrimination against people with Down Syndrome must stop.

Now. No excuses.