I really didn’t want to write this kind of post, but with some of the building noise related to Terri Schiavo, it’s become pretty clear that silence isn’t an option. Wednesday, March 31st is the fifth anniversary of Terri Schiavo’s death. I already had something planned for the blog that was bound to make some people unhappy, but very different than this post. (That other post will be published on this blog – on Wednesday at the latest.)
Last week, the show “Family Guy” opened with a short piece titled “Terri Schiavo – the musical.” Sorry – no link. It was offensive and inaccurate.
Of course it was. No shocker there. I decided years ago that I didn’t want to watch the show. For me, the real problem was that – out of four shows that I watched – two of them contained “gags” revolving around the humorous side of adults having sex with kids (or attempting to). I don’t see the humor in those kind of “gags.”
There are people I know who like the show and have told me I should watch it because there is material on the show I would find funny. Based on my limited experience with the show, it’s kind of like telling me I should go grope around in an unflushed toilet because someone dropped something really good to eat down there and I’d enjoy it.
Predictably, the Schindler family reacted. I guess I don’t blame them. But in a press release they included this:
The Foundation is calling on all disability rights organizations and pro-life organizations to join us in admonishing the producers and writers of The Family Guy.
To my knowledge, no disability rights organization, including NDY, has chosen to join them.
This hasn’t gone unnoticed by June Maxam at North Country Gazette. In her article “Where Are They Now?” Maxam lists the national disability groups that were involved in fighting the removal of Terri Schiavo’s feeding tube. She then suggests that the “silence” from the disability community on “Family Guy” is “condoning and advancing the prejudice, bigotry and hatred of the disabled.”
The fact is, we’re busy with real crises – and the “Family Guy” skit doesn’t come close to being a “crisis.” NDY is directly involved with coalitions opposing assisted suicide and euthanasia in 4 states, active in a major “futile care” case in one other, involved with a developing court challenge over guardianship limits in another state, providing technical assistance to disability advocates on state legislation, and monitoring the media for grossly inaccurate reporting on the Final Exit Network and individual homicides of people with disabilities. On top of that, we are working with other national disability groups on other disability rights issues through a national network of advocacy organizations that are run by people with disabilities. The majority of our work isn’t that visible -we’re seeking change, not headlines.
On the state level, every disability advocacy group is fighting looming draconian cuts to life-sustaining services – cuts which, if implemented, will result in early and unpleasant deaths for many people with disabilities through an indirect, backdoor euthanasia via neglect and abandonment.
Which one of these things do the Schindlers and June Maxam want us to put aside while we go support the Schindlers in their outrage over this show? It’s not like this is the worst thing the show has ever done – I think the bits I saw that turned me away were on an even lower level than the crappy piece on Terri Schiavo. If a show that features gags around sexual innuendo and kids remains on the air and has no trouble finding or keeping sponsors, outrage over this skit won’t scare them away.
Speaking of disability advocacy, tomorrow the Family Research Council is hosting a panel on Terri Schiavo’s death. Bobby Schindler is on the program, which describes him as follows:
Robert Schindler, brother of Terri; full-time pro-life and disability rights advocate
I’m sure the Family Research Council loves the conflation of disability rights and “pro-life.” That’s one thing they have in common with prominent “lefty” bioethicists. No one in the actual disability rights community appreciates it, though. And we don’t appreciate the description of Bobby Schindler as a disability rights advocate.
During the fight to prevent the removal of Terri Schiavo’s feeding tube, the Schindlers showed little understanding of disability rights – or of the potential importance of the involvement of national disability rights organizations in the debate. Surrounded by their prominent prolife supporters, they almost never mentioned the disability rights organizations supporting the struggle to save her life. If they’d made a habit of mentioning that, it would have been harder for news organizations – Fox, MSNBC, CNN, the networks, etc. to pretend this was all just one more battle in the “culture wars.” Unfortunately, framing the fight in terms of the culture wars suited “handlers” like Father Frank Pavone and Randall Terry just fine.
I wish I could say that I have any evidence that the Schindlers have any better understanding of the disability rights community and disability rights issues today than they did back then. I don’t. They are not involved in any of the battles mentioned above – and play almost exclusively to Christian Conservative audiences.
I don’t blame the Schindlers for whatever decisions they made back then – they were desperate, exhausted, grasping at whatever straw presented itself. They lost a daughter and a sister in a long, drawn-out nightmare.
But it’s a little hard to swallow the claim that Bobby Schindler is a disability rights advocate. When the Schindlers ride into town, the “culture wars” ride in with them.
And at the Family Research Council panel tomorrow, the topic will be the “culture wars,” not disability rights, since there is no one from our community sitting on that panel. –Stephen Drake
Fantastic post Stephen. Thank you for laying out the controversy over Family Guy in a rational and clear way.
Steve,
Thank you for this entry. It is brave and honest, and I imagine was hard to write. I wish I knew how to get prominent folks on both the left and the right to understand our issues stand on their own, and that we won’t be pawns in the so-called culture wars. I haven’t figured it out yet. If you do, though, please let me know.
Josie
“lefty” bioethicists? Is that necessary in a really good posting – the making of some kind of awkward balance to “right”? Not clear to me. Ouch. With love.
Ann,
I admit I’m surprised to see this kind of praise. Why? You’ve tended to conflated prolife and disability advocates in your own writings.
Josie,
I don’t know if this entry qualifies as “brave.” But thanks.
There are basically two ways, I think, to get political players to respect us as distinct stakeholders, since minorities are always subject to attempts at exploitation and co-opting in politics:
1. Build our political power as a community. -I think that a growing number of disability organizations have been working with increasing effectiveness on this front and the progress is slow, but encouraging.
2. Make a scene when it’s called for. That’s where groups like ADAPT and NDY are most effective.
Sanda,
Ouch. I probably should have said that it put them in agreement with pro-euthanasia and assisted suicide groups.
I was tired and thinking ahead at that point to a future blog entry – the press might not have noticed the disability community much, but a fair number of bioethicists did.
Instead of arguing on the merits – or debating in an open forum – the articles published tended to knock down straw man versions of disability perspectives with a good helping of “guilt by association” – meaning we were on the same side as prolifers. Please note that this is a similar tactic to Sarah Palin’s attacks on Obama about “palling around with terrorists.” But the bioethicists slimed us like that years earlier. So much for intellectual debate.
check your ego at the door Drake. Who in hell do you think you are? You’re no more than a great pretender. What a phony. Sounds to me like you have a problem because the Schindlers have more name recognition than you. As long as there are people like you taking the road you take, you’ll never get anywhere. And that’s unfortunate. You’re too busy patting yourself on the back to have any semblance of credibility.
Hi Stephen,
Not true that I always conflate pro-life and disability activists. Read me more closely. My advocacy is and has always been for patients’ rights and autonomy.
I write that the patient should have agency in their medical decisions, not the church, the state nor the medical profession. I would like to see all discrimination removed from care delivery. And I mean all discrimination: against women, the disabled, the elderly, gays, minorities.
I just think that the common slippery slope argument that is often associated with disability rights activists re; aid in dying is more complicated than we let on. The arguments tend to be flat and remove all nuance from the discussion.
I admit that the fear the disabled have of discrimination is legitimate. I just don’t think it should be used to inhibit the rights of others. It should be addressed on its own terms.
Great post! I look forward to more dialogue.
During the fight to prevent the removal of Terri Schiavo’s feeding tube, the Schindlers showed little understanding of disability rights – or of the potential importance of the involvement of national disability rights organizations in the debate. Surrounded by their prominent prolife supporters, they almost never mentioned the disability rights organizations supporting the struggle to save her life. If they’d made a habit of mentioning that, it would have been harder for news organizations – Fox, MSNBC, CNN, the networks, etc. to pretend this was all just one more battle in the “culture wars.”
First of all, I am a big supporter of NDY and disability rights, and I am angry about the tendency of the right and left to couch this issue only in terms of “culture wars” and not disability rights.
However, I do think you’re being a little hard on the Schindlers. Many people do not understand social oppression of certain people groups until they experience it, and when they do, they don’t always know how to react. My guess is that the Schindlers didn’t talk as much about the disability rights organizations trying to assist them because they didn’t fully understand the significance of tbe disability rights movement, like most people in society. I don’t think it was their fault that the media couched the issue in terms of the culture wars-the media always does that regardless of the players involved. For instance, every time Kevorkian enters the news, the culture wars come up and disability rights organizations are ignored.
Also, the Scindlers were pro life before all of this happened to them, and still are, thus, the conflation of disability rights and life issues seems natural to them, even if it is not necessarily politically helpful. I don’t think it’s fair to fault them for seeking help wherever it was offered, it is the media’s fault for ignoring the disability rights component to all of this.
My guess is that Bobby Schindler remains active in the pro life lobby because that is where his political convictions are, but being pro life and being involved in those causes does not mean that someone doesn’t care about disability rights. Most likely he and Terri’s other family members are still learning about the disability rights movement and how the activities of their organization fit into that.
PS. Free speech for all, but you should know that Ann Neumann is very pro euthanasia and is twisting what you said in this article and using her misinterpreation on another site to argue that the involuntary starvation of people like Terri is not a disability rights issue and that you agree with her position on these matters. Just thought you’d like to know where her comment was coming from.
Oops! I’m so sorry I didn’t read carefully, you’ve already noted AN’s dubious motivations. My bad.
you believe in censorship too Drake? You have disabilities all right, mental ones. Your disdain and hate for Bobby Schindler smackes of ego and jealousy. He’s a far better man than you’ll ever be—writer too.
you’re more crass and tasteless than the Family Guy. No wonder you advocate for them
Based on my limited experience with the show, it’s kind of like telling me I should go grope around in an unflushed toilet because someone dropped something really good to eat down there and I’d enjoy it.
you really do eat it
Dear Mr. Drake. As a local resident here in the Tampa Bay area, and having a family member who is disabled, I can tell you that Bobby has helped hundreds of families with disabilities find medical care, legal help etc. with VERY LITTLE RESOURCES. I respect your efforts and enjoy reading your posts. I just hope that ALL the people in this fight can find a united position. I know organizations do use people for their own agenda, but Bobby’s heart is absolutely in the right place. Seeing all the efforts, by having a better vision from a higher place on the mountain is what I would expect from you.
Sometime we need a discussion on who are our “allies”, as people with severe disabilities, and/or aged. Groups. I just had a sad e-encounter with a “left-progressive” group founder, an intellectual who just couldn’t “get it” about society “oppressing” us(his question was:did I think society systematically oppresses disabled people?). I suggested NDY as a source, in one of my examples and
it became clear, he didn’t “get it” about society in re disability (he denied most of what I said)nor “assisted suicide”. His answer was he ” believed in suicide” and it was clear he didn’t understand
what the “assisted suicide” “movement” is. Sad and scary to me. But, I have more hope for the progessive left, which is where I am, based on compassion of some, that we are strong, we are right and most people become disabled before they die and then, usually “get it”, if they resisted. Some, like Howard Zinn, “got it”.
Stephen,
I agree that that Family Guy episode is extremely minor compared to legalized medical killing of the disabled.
But there is a point that I wish that you would make in the Terri Schiavo case that I wish you would make. That point is that it is despicable to argue that someone should be killed because of who you are told the person’s supporters are and that decent people don’t do that.
As I recall, you did an excellent job at the time of explaining disability concerns. But people who wanted her dead would not listen to you. And you are right that some others wanted to define this as a primarily religious issue.
But I still think that you are being a little unfair to the Schindlers. Who care about their allies? They lost a a daughter/sister because of bigotry toward the severely mentally handicapped. That said, it is quite obvious that this pains you and that you look forward to embracing them when they do fully understand.
I should point out that I am used to being in a position where I don’t agree with everything those I associate with do. At Church I am known for being a nuisance about my pro-gay rights views. More recently, I have been a supporter of health care reform. (I was and still am a big fan of Bart Stupak. It was obvious that he always truly wanted health care reform, unlike the fiscal conservatives.)
Dear Anonymous: (the one who said to check my ego at the door) Perhaps you don’t bother to read this blog often or at all. This isn’t about *me* – it’s about the disability community and our right to represent ourselves. That includes the right not to be used as a football by players on either side of the political spectrum.
To Ann Neumann:
OK, let’s say that you try to lump “pro-life” and disability activists together as often as you can.
I’d be a lot more convinced of your sincerity if your replies didn’t consistently avoid those elements of the “right to die” movement that you don’t support – kind of pretending they don’t exist. Whether it’s the wide-open door policy of the Final Exit Network or the endorsement of infanticide by RTD activists like Faye Girsh, you conveniently avoid acknowledging those elements within the “right to die” network that are working a “slippery slope” political strategy (AKA the incrementalist approach).
Safepres –
Never mind the oops – if you read this blog much, you’ll find little evidence that I – or NDY – extends a lot of trust to any players outside of the disability advocacy community.
As for the Schindlers, I don’t control what they do, and they were always entitled to be as prolife as their beliefs led them to be.
Where the disconnect hits is when their organization is portrayed as “prolife and disability rights” – their has been no outreach from the organization to try to understand the community or our issues at all. They are not our representatives – and they really shouldn’t be surprised that there is no response when they want disability groups to follow them on some endeavor.
To the “Anonymous” who said I had “mental disabilities”: You obviously don’t read this blog much. I have brain injury and learning disabilities. And you bring up an interesting question about where the heck you’re coming from – You are obviously outraged over Terri Schiavo but don’t hesitate to use “mental disabilities” as a slur. Please look up “irony” in the dictionary.
To the “Anonymous” who accused me of supporting the show “Family Guy.”: I suggest a refresher course in reading comprehension. It’s impossible for me to see how anyone reading my comments could see me as “supporting” the show.
To Ron Hummel,
I deleted your second post since it didn’t actually have the contact info in it you thought was included. As for seeing things “from a higher place,” I – and other disability activists – are too busy in the trenches to do much more than look up once in awhile to try to see if we can spot incoming crap.
To John,
Thank you for your words, but I don’t really give much thought to when, where or how I will be embracing anyone who somehow “gets it.” Those aren’t the kinds of terms I think in.
We’re trying to reach an audience outside of Christian Conservatives (some of whom aren’t bashful about cutting funding for life-sustaining supports, but I guess they don’t view it as direct killing).
And, frankly, a lot of the Christian Conservatives have set the euthanasia issues on a relatively low priority – certainly way below preventing legalization of gay marriage, which in turn seems to have replaced opposition to abortion as their number one priority.
I looked at the site of “Priests for Life” – closely associated with the Schindlers. According to the site, the “Culture of Death” encompasses being pro-euthanasia, pro-abortion rights, and pro gay rights. I guess that disability rights activists who went to the Florida Hospice to protest Terri Schiavo’s death should have stayed home – the ones who were pro-choice on abortion and the ones who were gay, anyway. That’s the message I get from the organizations most closely associated with the Schindlers.
It’s surprising that you don’t see a connection between the Family guy segment and the draconian cuts about to happen.
Why do you feel the need to be tolerant of the Family Guy humor? Those guys have all of their faculties, gobs of money, great lawyers and they feel free to poke a joke at the disabled.
I understand your reluctance to be yoked to the Right to Life people because it is from a religious spring.
However, just because it is a devout Christian who points out the issue, it is short sighted to jump away from it. The Family Guy humor, if you can call it that, was heartless and made by those with the least amount of understanding of the disabled population. The joke was for those who are not disabled.
Heads up…The Family Guy joke is the apathy that will make the draconian budget cuts possible.
One other thought…
Is your fear of the “Culture War” being included in a faith based movement and thus losing your identity?
You might consider re thinking that strategy. During the Terri Schiavo days, the press gave zero to none coverage of the disability groups involved in the protest. The faith based groups had all of the oxygen.
The Family Research Council is a right to life organization which inherently includes human life in all of its interpretations. If they had invited disability as a separate issue (when they see it as a larger umbrella over disability) you would not have attended because they are faith based…worse…Christian. You’re peeved because they include disability but do not distinguish it?
The era in which our country aggressively supported policy and funds the issues of the disabled, Christianity was not under attack. The “Culture War” at that time had Christians at the forefront.
It seems to me that you want to only hand out with the elite media that won’t give you the time of day and will develop jokes at your expense. At the same time, Christians find you instrinsically valuable but they are an unpopular group in the “culture war” so you hold them at arms’ length.
Kate —
I’ll take your major points and address them:
Re: Family Guy – reread my blog entry. I don’t recommend “tolerating” the show. I made my own decision not to watch the show after being repulsed by humor (IMO) much more offensive than the Terri Schiavo piece. Using humor around sexual exploitation of kids hasn’t hurt its popularity or its advertising appeal. I believe in picking my battles and this just isn’t it.
As to your interpretation of Christian Conservative political groups – it would be more accurate to say they *took* all the oxygen during Schiavo. I don’t want to characterize all Christians, conservatives or prolifers that way as individuals that way, but the political organizations have a history of being every bit as unprincipled in attempting to exploit people with disabilities as political players on the left.
You are right in that we don’t want to be attached to their political baggage. While NDY takes no position on prebirth issues, the majority of disability activists identify as prochoice on that topic. NDY – and most disability activists – believe in full recognition of GLBT rights, including the right to be married. And we don’t agree with the types of “Christian” policies endorsed by these organizations that – even before the economic meltdown – would cut “entitlements” AKA the money and supports that old, ill, disabled and poor people need to live. Those cuts are a sort of slow backdoor euthanasia.