Bill Peace was the first disabled writer to introduce me to the notion of “The Bad Cripple,” the title of a blog he kept. He did something remarkable there. He told the truth. He wrote with astonishing wit and rage against ableist institutions.
Alongside disabled satirists like Ingrid Tischer and Danielle Perez, Bill declined to play the role of the good cripple, the inspirational cripple, the super-crip. The company of these disabled writers and thinkers gave me liberty to perform as the nondisabled character, Tipsy Tullivan, on YouTube for five years.
Here is a video titled “EZ Breezy Assisted Suicide” featuring Tipsy and Bill Peace.
On his blog, The Bad Cripple, on April 24, 2019, Bill wrote: “I am going to the same hospital as Carrie Ann Lucas. I have the same insurance company. I assume at some point an arbitrary insurance denial may lead to my death as well.” He was right. He died of insurance denial on July 2, 2019.
Why do disabled civil rights leaders die this way?
I feel the need to ask this question before asking the other questions: Why did Northwestern University, and a band of feminists, censor Bill’s writing? What is so scary about disabled sexuality that it must be purged?
Northwestern University published “Head Nurses” in the Winter 2014 issue of Atrium. The issue was titled “Bad Girls” and edited by Alice Dreger. Shortly after the essay appeared, Northwestern took down Bill’s essay and shuttered the magazine. The Chicago Tribune reported: “Story of sex with nurse prompts censorship claims at Northwestern.” Alice Dreger resigned in protest.
In 2017, I sat down with Bill to talk about the fall-out from his essay “Head Nurses.” Our conversation rambles. We were in his apartment and it was a sunny afternoon.
Why resuscitate this conversation now? I recently withdrew from the American Society for Bioethics and Humanities Conference due to censorship.
I had proposed a panel on Cyborg Ethics. I only recognize cyborgs who are disabled and/or trans and I write about that at NYT in an essay called “The Dawn of the Tryborg.”
The conference informed me that access to the conversation would cost $300-$700 (tiered registration) and that it would never be available to disabled people in the general public.
Who sponsored the conference? Northwestern. When I joked about Northwestern’s enthusiasm for censorship, given Bill’s essay, to another radical activist attendee, she had never heard about Bill’s essay, the shuttered magazine, nor Alice Dreger’s resignation. So I offer this interview, as both transcript and audio, to remind us of where we have been as a culture. Wherever we are going, I hope it’s in the direction toward disabled people’s sexual liberation and license to say whatever we please.
My gratitude to Elizabeth Ellen and HOBART for working with me to present the complete transcript of the interview and the audio with Bill.
***
Bill Peace Interview July 16, 2018
SUMMARY KEYWORDS
Atrium, culture, devotees, disability, disabled, essay, hospital, men, The Mighty, NYT, nurse, paralyzed, people, rehab, sex, talk, Tokyo, UTIs, veterans, Vice, women, world.
SPEAKERS
Jeannie Olvera Novack [bystander], Jillian Weise [interviwer], Bill Peace [interviewee]
Jillian Weise 00:00
I'm just gonna put this [tape recorder] near you okay, Bill
Bill Peace 00:02
Okay.
Jillian Weise 00:02
Uh and so you met her [devotee] in Baltimore.
Bill Peace 00:04
So I met her in Baltimore we went out to dinner. And, uh, it was [pause] Her point is devotees get a bad name, there are creepers out there. But most devotees it's more of a fetish.
Jillian Weise 00:22
Mhm
Bill Peace 00:23
And she likened it more to like stockings, you can't get off.
Jillian Weise 00:27
Oh, stockings, okay.
Bill Peace 00:29
Or a blonde.
Jillian Weise 00:30
Okay.
Bill Peace 00:31
Or or a brunette or redhead or
Jillian Weise 00:33
Yeah.
Bill Peace 00:34
Everybody has a particular type and she said our type is just really unusual and that there is a range of devotees. So she'll be very quickly, very quick to acknowledge some men are grossly clinical.
Jillian Weise 00:52
Mhm.
Bill Peace 00:53
And she disavows herself.
Jillian Weise 00:55
Yeah.
Bill Peace 00:56
But to think of devotees on a spectrum.
Jillian Weise 01:01
Yeah.
Bill Peace 01:02
It's probably to me a little more accurate.
Jillian Weise 01:05
Yeah.
Bill Peace 01:05
Because it's easy to demonize these people.
Jillian Weise 01:07
Mhm.
Bill Peace 01:09
You know, and then you add on just being disabled and sexual.
Jillian Weise 01:14
Yeah.
Bill Peace 01:14
Well, you're not supposed to do that.
Jillian Weise 01:15
Yeah.
Bill Peace 01:19
That's a real [pause] that hasn't changed to this day.
Jillian Weise 01:25
Oh, yeah, no it has not.
Bill Peace 01:26
It... I mean, the vets were the first people that put it in front of other people's faces.
Jillian Weise 01:32
Mhm
Bill Peace 01:33
Like Vietnam guys.
Jillian Weise 01:34
Mhm.
Bill Peace 01:35
And they didn't do it in a very productive way. But at least there was an idea that there is sex after disability.
Jillian Weise 01:45
Yeah.
Bill Peace 01:49
And it was really backwards.
Jillian Weise 01:50
Mhm.
Bill Peace 01:52
It was highly medicalized.
Jillian Weise 01:55
Mhm.
Bill Peace 01:56
And seen, as you know, very unusual.
Jillian Weise 02:01
Mhm.
Bill Peace 02:01
And that, and that hasn't changed.
Jillian Weise 02:04
No, not at all. Well, like Vice has a disability problem column.
Bill Peace 02:12
Yeah, oh god.
Jillian Weise 02:15
Right. And it's like, “disabled people can go to bars”. And it's been like, “I need a sex surrogate.” And I'm like, why is this? Vice I like! Why is?
Bill Peace 02:26
I-
Jillian Weise 02:27
Vice has some really cool reportage. Why is the disability column stuff like this?
Bill Peace 02:33
I mean, look at The Mighty. I mean, you ever want to make me crazy?
Jillian Weise 02:37
Yeah.
Bill Peace 02:37
Start talking to me about The Mighty. And it is ...Those people are just reprehensible.
Jillian Weise 02:44
Yeah.
Bill Peace 02:44
I mean, and I've met those people.
Jillian Weise 02:48
I love how you meet them, Bill. I love how you’re like, let's talk about devotees, also I met X.
Bill Peace 02:54
But you've got to understand these people. Where are they coming from?
Jillian Weise 02:57
Yeah.
Bill Peace 02:58
And the guy that runs it got 3 million bucks, from The Times.
Jillian Weise 03:02
Okay.
Bill Peace 03:03
To create this website. And it's just clickbait that, you know, they're going by advertising. There. It's money.
Jillian Weise 03:11
Jeannie, that's awesome, thank you, that's awesome. Yeah.
Bill Peace 03:16
Yeah, It's a little intimidating.
Bystander 03:19
Trust me, I know that there is a standard.
Jillian Weise 03:24
Okay, so here's my question about the devotees though, do you feel like the disabled men and women have agency in those relationships? Or is it within a spectrum?
Bill Peace 03:36
I think gender here plays a giant variable. I think. Do you read The Crippled Scholar?
Jillian Weise 03:43
Yeah.
Bill Peace 03:44
She just had something up.
Jillian Weise 03:45
Yes. Amazing. Yeah, really good.
Bill Peace 03:47
Really top notch. I can say as a disabled man, I'm really never worried about being attacked. I just, I am who I am. And I saw disability more as a filter than anything else, but it never made me feel like I was not worthy of dating or . . . The struggle was not attractiveness, the struggle was being asexual.
Jillian Weise 03:58
Yeah. Mhm.
Bill Peace 04:20
You know, so I think women struggle. My sense is that the, the agency is very, very different. Where women struggle with appearance, and being attractive, and being sexual; With men it's either you are sexual or you are not in that there's no in between. And the assumption is you are asexual. And that's really in your face, where I think what women experience is a lot more subtle.
Jillian Weise 04:39
Mhm. Okay.
Bill Peace 04:50
It's really culturally based just like disability is culturally based. I've gotten to know a few female scholars. From Ntozake, you remember from Japan, and she was married, you know, she went to mainstream schools and, really, disability in downtown Tokyo when you are mainstreamed doesn't really mean a whole lot.
Jillian Weise 05:19
Okay.
Bill Peace 05:20
The Tokyo system subway system is 100% accessible.
Jillian Weise 05:23
Oh, wow. Okay. Finally!
Bill Peace 05:26
I had no idea these things existed, but. Do you even know what it is? You the subways, the escalator.
Jillian Weise 05:34
Yep.
Bill Peace 05:35
At the top of the escalator is a little button, you press the button and five steps fold out flat. It doesn't pause. It doesn't do anything. Just makes a little platform.
Jillian Weise 05:49
And you just roll on?
Bill Peace 05:50
And you just roll on.
Jillian Weise 05:51
Wow, that's really cool.
Bill Peace 05:52
So, a woman with a baby stroller.
Jillian Weise 05:54
Yeah.
Bill Peace 05:54
A guy with a walker. Uh, people with luggage.
Jillian Weise 05:55
Mhm.
Bill Peace 05:58
It's used all day long.
Jillian Weise 06:00
Yep.
Bill Peace 06:01
But go to China, radically different culture. And Mei, you've met, she would have to marry a lower class now.
Jillian Weise 06:06
That at her class level, at a very high educational level, no one would marry her. No one above upper class, Chinese man, would even consider her. Wow.
Bill Peace 06:28
Okay She, if she wanted to get married, would have to go into a rural village and find this male of a lower class. This is waaay different. So I think what women experienced in terms of their sexual agency is very different. And men struggle in a different way.
Jillian Weise 06:51
And Bill, You said men are either read as sexual or asexual and mostly they're read as asexual.
Bill Peace 06:56
Absolutely.
Jillian Weise 06:56
Okay.
Bill Peace 06:58
From the time I was paralyzed at 18 to this day, people still ask me about sex.
Jillian Weise 07:04
Unbelievable.
Bill Peace 07:05
I mean, the homeless guy,
Jillian Weise 07:07
Mhm.
Bill Peace 07:08
The lawyer.
Jillian Weise 07:09
Mhm
Bill Peace 07:10
My son's teachers when he was in middle school.
Jillian Weise 07:12
Nooo!
Bill Peace 07:14
His science teacher, or you know, just typical science meeting. He's doing great in nerve science. She was a really nice lady. She's an anthropologist. And towards the end, "You know, I don't feel really awkward asking this because I know you're an anthropologist, but can you have sex?" Um, people I've hired to, like, repair a door.
Jillian Weise 07:36
Do you like have a pat answer for them that puts them in their place, or do you just indulge them over, and over, and over with the honest answer?
Bill Peace 07:45
Uh, as I age I ask, "Why are you asking me that question?"
Jillian Weise 07:50
Mhm, ooo nice, yeah.
Bill Peace 07:51
And one out of 100 times, somebody asking me a rude and intrusive question has a really good reason.
Jillian Weise 08:01
Mhm.
Bill Peace 08:02
So...
Jillian Weise 08:03
One out of a hundred! [They both cackle in that knowing crip way].
Bill Peace 08:07
An example, I was whitewater rafting with my son about five years ago, we were in the Pacific Northwest, and the guy was asking all these questions. I was trying to be helpful because he's the raft guy about to get in the white water. I don't want to piss them off, right?
Jillian Weise 08:22
Yep!
Bill Peace 08:22
You know, I want to survive the experience.
Jillian Weise 08:25
Yeah.
Bill Peace 08:26
So I was answering a lot of questions and I said, "Why are you asking me all this?" And he said, "Well, my dad was paralyzed six months ago, and I want to take him out whitewater rafting." And I said, "Oh, okay! And then we exchanged emails.
Jillian Weise 08:40
Yeah.
Bill Peace 08:41
And then it was the floodgates.
Jillian Weise 08:43
Yeah.
Bill Peace 08:44
Open.
Jillian Weise 08:44
Mhm
Bill Peace 08:47
I've had other paralyzed men ask me and generally what they're fishing for is information about fertility.
Jillian Weise 08:54
Okay.
Bill Peace 08:56
Because when I was paralyzed in 1978, no one gave me any information about fertility. And I've spoken, not too many, but that's a news blackout.
Jillian Weise 09:09
Mhm.
Bill Peace 09:09
That sex and reproduction are simply not discussed.
Jillian Weise 09:13
Yeah.
Bill Peace 09:15
Women there fare better.
Jillian Weise 09:18
Okay.
Bill Peace 09:19
Because there's birth control.
Jillian Weise 09:21
Mhm.
Bill Peace 09:21
And they're really good about that.
Jillian Weise 09:24
Mhm
Bill Peace 09:24
Because when I was first paralyzed, it was believed that one couldn't get pregnant post spinal cord injury.
Jillian Weise 09:30
Oh, wow. Okay.
Bill Peace 09:32
Because, you know, after an injury like that, generally, you don't have a period for like, three to six months because of the trauma.
Jillian Weise 09:38
Mhm
Bill Peace 09:40
And you can imagine what happens . . .
Jillian Weise 09:42
Yep.
Bill Peace 09:42
. . . When women were coming back pregnant.
Jillian Weise 09:43
Yeah.
Bill Peace 09:44
So that doesn't happen anymore.
Jillian Weise 09:47
Yeah.
Bill Peace 09:48
But stats associated with women in disability and gynecological care.
Jillian Weise 09:54
Oh, yeah. I don't , but I know the experience of the gynecologist thing apropos of nothing. "You can't have kids, you can't." You know another one, “You can.” You know what I mean? Like there's no tenderness to it, it's like a book you won't...
Bill Peace 10:08
Right.
Jillian Weise 10:08
“You can't, you shouldn't, you may, don't do it.” You know what I mean, like? [Laughs]
Bill Peace 10:14
Or just, did you ever read Christina's Sumansky's blog? It's still up there.
Jillian Weise 10:19
Well, I don't know.
Bill Peace 10:21
She was a woman, lived in New Jersey, was at a party, got drunk in the shower and broke her neck.
Jillian Weise 10:28
Oh my gosh, okay.
Bill Peace 10:29
And she was in a relationship. And she ended up, at the six-year mark which, in the olden days . . .
Jillian Weise 10:38
Yeah.
Bill Peace 10:39
People wanted to die post-injury immediately. Okay. Now that stat's moved out six years.
Jillian Weise 10:45
Oh, okay, okay.
Bill Peace 10:47
Because you're open to clinical trials for six years.
Jillian Weise 10:50
Oh, okay.
Bill Peace 10:51
So you're, you're viable to the docs for six years.
Jillian Weise 10:55
Okay.
Bill Peace 10:56
And then after six years, they cut off.
Jillian Weise 10:58
Okay.
Bill Peace 10:59
You're useless. So, she's at the six year point and she went to Compassion & Choices, found physicians and lawyers. And she did B-set. She wrote about gynecological care and bowel programs. And those are the two things that drove her to end her life.
Jillian Weise 11:14
Wow.
Bill Peace 11:21
Because the bowel program caused all this other thing, but there's this long entry about, what can I do about my bowels and my period, which was very difficult for her.
Jillian Weise 11:31
Yeah.
Bill Peace 11:33
And the gynecologist expected her to bring a nurse, an RN, and a Hoyer lift, and all this gear so she can get on the table. And the doc just sat in her office waiting for her to be in the stirrups. And all ready, and didn't wait. [It was] too long for her to wait for her to get dressed, because it took 45 minutes, and she just talked to her right there. That's not happening to her now.
Jillian Weise 11:49
Oh my gosh. No.
Bill Peace 12:04
Under any circumstance. I mean, I'm ambitious about Yale.
Jillian Weise 12:07
Yeah.
Bill Peace 12:08
But you know, you talk to our agency, I asserted my agency with a vengeance.
Jillian Weise 12:13
Mhm. Mhm.
Bill Peace 12:14
And boy, when they did that, when you do that, everything comes to a standstill. It really does.
Jillian Weise 12:20
Yup.
Bill Peace 12:21
How many people know to do that?
Jillian Weise 12:23
Yeah.
Bill Peace 12:24
And, you know, I was having this stress test and I said, "This is ableism."
Jillian Weise 12:30
Mhm.
Bill Peace 12:30
"This is flatout bigotry."
Jillian Weise 12:32
Yeah.
Bill Peace 12:33
And the woman that was helping me, the patient representative, was Black. And I said, "If I, we exchange Black for being disabled, you'd be furious." But, what's this ableism thing? I've never heard of this.
Jillian Weise 12:47
Oh, she said that?
Bill Peace 12:48
Yeah.
Jillian Weise 12:48
Wow!
Bill Peace 12:49
If I gotta start explaining ableism...
Jillian Weise 12:51
I know, in the fricking hospital.
Bill Peace 12:53
In the hospital, I got a big fucking problem.
Jillian Weise 12:55
Yeah.
Bill Peace 12:55
I mean, I really do.
Jillian Weise 12:56
Yeah.
Bill Peace 12:57
Um, so it's different for men, the whole, the agency?
Jillian Weise 13:03
Well, while we're here though, you were talking about 1978. And I really want to talk about, um, “Head Nurses.” Are you, I mean, are you okay to talk about that whole experience? Or like, mainly um, this is an essay that you wrote, when, recently? Or did you write it...
Bill Peace 13:20
I wrote that essay, like a long time ago.
Jillian Weise 13:23
Okay.
Bill Peace 13:25
And it was the nurse that I was closest to.
Jillian Weise 13:30
Yeah.
Bill Peace 13:30
I mean we were, I would say we saw each other every other day for three years.
Jillian Weise 13:36
Mhm.
Bill Peace 13:37
When you have that extra level of kin, my parents how,
Jillian Weise 13:43
Yeah.
Bill Peace 13:43
We took her to the beach.
Jillian Weise 13:45
Yeah.
Bill Peace 13:48
It was a different era.
Jillian Weise 13:50
Yeah.
Bill Peace 13:51
Cuz it's '78. This is pre-AIDS, pre-herpes, pre-cocaine of the 80s. It was, birth control was free. Not free, it was readily available. It was like the glory days...
Jillian Weise 14:13
Yeah!
Bill Peace 14:13
... Of birth control, we were like. "Wow, there's a pill, I can have sex!" You know? Um, but there was an intensity of rehabilitation that no longer exists.
Jillian Weise 14:24
Okay.
Bill Peace 14:25
So, in my mind, what I was writing was really an homage to the underpaid young women that poured their heart and soul into their job. On the team, they're 21.
Jillian Weise 14:43
Mhm.
Bill Peace 14:44
They're not everybody. Oh, it's a physical therapist, they have to have a PhD.
Jillian Weise 14:49
Yeah.
Bill Peace 14:49
So you're thinking today, you’re out of the box PT is late 20s, early 30s.
Jillian Weise 14:57
Mhm.
Bill Peace 14:58
She's sitting in a room with 10 other patients being treated by physical therapy students and she'll meet me once a month. When I had rehab, it was one-on-one, she was 21, she had just gotten out of school with a BS, had a year of physical therapy.
Jillian Weise 15:21
Mhm.
Bill Peace 15:21
Rehab medicine was bottom of the barrel for, it was a dead-end. Nothing you can do with paralyzed people. So it was really women out of the box that were incredibly hard working and caring.
Jillian Weise 15:37
Mhm.
Bill Peace 15:38
And two years older than me. And they're all, you know, beautiful young women. And they're sitting on my legs stretching out my spinal cord. My, my hamstring. That's not normal physical contact.
Jillian Weise 15:54
Of course!
Bill Peace 15:55
This does not...
Jillian Weise 15:56
Yeah!
Bill Peace 15:56
You know, that's not normal. So the way we dealt with it was humor. And it was, it was x-rated. It was flat out filth.
Jillian Weise 16:07
Yeah.
Bill Peace 16:08
But it was funny.
Jillian Weise 16:09
Mhm.
Bill Peace 16:10
And they they dished as well as we got. But, you know, I pissed on these women, I barfed on them, I shit on 'em. And it was one-on-one for months, and months, and months on end. And...
Jillian Weise 16:28
Over three years!
Bill Peace 16:29
Yes!
Jillian Weise 16:30
Yeah.
Bill Peace 16:30
That's how long I knew her.
Jillian Weise 16:31
Mhm.
Bill Peace 16:32
But this, how do I? I exchange emails and Christmas cards with all those women because they're only three years older than me.
Jillian Weise 16:41
Yeah, yeah.
Bill Peace 16:42
So it was, you know, that's just so long.
Jillian Weise 16:47
Mhm.
Bill Peace 16:48
Nobody even knows what that was like.
Jillian Weise 16:50
Mhm.
Bill Peace 16:51
So it was in their honor...
Jillian Weise 16:53
That you wrote the thing?
Bill Peace 16:54
That I wrote this. And I was confronted with a dilemma. Right, Jeannie, you're talking about this? My language. It was crass. I talked about dick police, head nurses, and then I got a world class blow job.
Jillian Weise 17:11
Yeah.
Bill Peace 17:12
And it appeared in a peer-reviewed journal.
Jillian Weise 17:13
Yeah.
Bill Peace 17:14
There was one journal in the world that that language was appropriate and that was for Atrium.
Jillian Weise 17:22
Yeah.
Bill Peace 17:22
If you look back ... Atrium did some really, really good things, yeah. Mine was tame in comparison to other stuff they did.
Jillian Weise 17:31
Yeah.
Bill Peace 17:32
And before that issue came out we had a conference call.
Jillian Weise 17:37
But wait a second, I want to slow down.
Bill Peace 17:38
Okay.
Jillian Weise 17:39
You said when you started Jeannie, is she a reader, do you read for him? Or do y'all just talk things out? Or what? Like?
Jeannie 17:44
No we, I read his paper.
Jillian Weise 17:46
Okay, yeah.
Jeannie 17:47
And we talked about it.
Bill Peace 17:48
Because I knew it was gonna be...
Jillian Weise 17:50
But this is important though! Because here you are, like a really self-aware, I imagine, woman. Like, you could have red flagged him or something?
Jeannie 17:59
Well, um, well, first of all, I thought that the paper was very nuanced.
Jillian Weise 18:03
Yeah. Oh, yeah. I'm on your side, though. Don't get me wrong. Like, I'm, like, amazed that a blow job in the 70s can be censored and not appreciated.
Bill Peace 18:12
[Laughs]
Jillian Weise 18:12
But like... [all laugh]
Bill Peace 18:13
But that's what Alice and I, we were, we felt like we went down the rabbit hole.
Jillian Weise 18:19
Yeah!
Bill Peace 18:19
'Cuz Alice kept on saying, "We're talking about a blowjob in 1978."
Jillian Weise 18:25
Yeah.
Bill Peace 18:25
"Taking down a journal."
Jillian Weise 18:27
Yeah.
Bill Peace 18:28
Three people left Northwestern. You know, the journal doesn't exist.
Jillian Weise 18:34
Yeah.
Bill Peace 18:35
You know, it was not just me. But that's a pretty friggin' scary spot.
Jillian Weise 18:41
Yeah.
Bill Peace 18:44
So...
Jillian Weise 18:45
Okay, [to Jeannie] so you're reading it, you're thinking it's nuanced, which it totally is.
Jeannie 18:48
Yeah. I can also see how if you read it with 2017 mindset ...
Jillian Weise 18:54
Uh huh.
Jeannie 18:54
This would be rather shocking. You know, you think of all of the patient provider- Okay. Ethics and how this is still horrible. And given I can't see this happening now, But if you transport yourself to, you know, a generation ago, and you see it with those eyes, you can't really judge um everything that takes place in a previous time by today's awareness. So overall, I just think it's a very, um, it's a very good look at just a a side of, you know, disability that maybe doesn't get thought of or talked about.
Jillian Weise 19:31
Yeah!
Jeannie 19:31
I thought it was great!
Jillian Weise 19:32
Yeah.
Jeannie 19:33
But I could see how it could be kind of jarring for some readers, but you have to again, not not read it with 21st century you have to change the tempo.
Jillian Weise 19:43
Yeah, cool.
Bill Peace 19:43
The first inkling I got. This may be trouble.
Jillian Weise 19:48
Uh oh, yeah, I'm just making sure we're still ... we are, okay.
Bill Peace 19:51
One of my colleagues at Syracuse, Rebecca Garden, who is at Upstate, she read it, she sent me a very long-
Jillian Weise 20:04
Really!
Bill Peace 20:04
Pointed email. This is misogynist bullshit. I'm deeply offended. And that you're taking away the professionalism of the female profession. You're ignoring how nurses have been exploited for time immemorial. You're sexualizing-
Jillian Weise 20:24
That's not your essay! That's not your essay!
Bill Peace 20:27
That is a line of logic that I was grossly unprepared for.
Jillian Weise 20:34
Yeah.
Bill Peace 20:36
I-I-I read her emails, we went back and forth, I changed the essay because of what she said. I thought I made enough provisos and she just ended our friendship.
Jillian Weise 20:49
Wow! Okay. So you didn't change the essay pre-publication?
Bill Peace 20:53
Yes I-
Jillian Weise 20:53
[Jillian and Bill at once] Because of. Okay.
Bill Peace 20:55
The charge of misogyny.
Jillian Weise 20:57
Wait, so you had sent it to her though?
Bill Peace 20:59
Right, in draft form.
Jillian Weise 21:00
Mhm.
Bill Peace 21:01
Because I thought. I sent it to Steve.
Jillian Weise 21:03
Because of this, this stuff.
Bill Peace 21:04
Right. And I sent it to Rebecca, those were the two people-
Jillian Weise 21:07
Yep.
Bill Peace 21:08
I felt closest to?
Jillian Weise 21:11
Yeah.
Bill Peace 21:12
That would not, would give me real feedback.
Jillian Weise 21:15
Yeah.
Bill Peace 21:17
Because I was worried about the language. And I felt tied to use the language. Because we did refer, in that era, There were Dick Police. There were Head Nurses.
Jillian Weise 21:30
Yeah.
Bill Peace 21:32
And those were terms that were used all over the place. Didn't matter where in the metropolitan area you were, those were common. Everybody knew what it meant. And the Dick Police meant it was the new nurse out of the box.
Jillian Weise 21:49
Mhm.
Bill Peace 21:50
She doesn't have 30 days of experience.
Jillian Weise 21:52
Yeah.
Bill Peace 21:53
Nobody wanted that job.
Jillian Weise 21:55
Yeah.
Bill Peace 21:55
The nurses didn't want it.
Jillian Weise 21:56
Yeah.
Bill Peace 21:58
The gut, we would have, literally we would hide, we'd hear the cart and go run.
Jillian Weise 22:01
Yeah.
Bill Peace 22:04
Put yourself, You're 18 years old and you have this beautiful young woman who's 21.
Jillian Weise 22:12
Yeah.
Bill Peace 22:12
And she's gonna hold your penis and show you how to put a catheter in. That's not normal. I'm sorry. That's a massive mindfuck.
Jillian Weise 22:23
For sure!
Bill Peace 22:25
For you. And so that's why we referred to them. And the head nurse was, it was not-
Jillian Weise 22:33
To refer to them as that is to normalize.
Bill Peace 22:36
Yes, that's right.
Jillian Weise 22:37
Okay.
Bill Peace 22:37
Like, you're avoiding Dick Police, because you don't want to deal with the reality that you have to take a catheter, shove it up there, and that's the way you're going to pee for the the rest of your life.
Jillian Weise 22:47
Yeah.
Bill Peace 22:49
And there's a real knack to that.
Jillian Weise 22:50
Yeah.
Bill Peace 22:51
At the time I did that, and I was learning, it hurt.
Jillian Weise 22:54
Yeah.
Bill Peace 22:55
Every, every time.
Jillian Weise 22:57
Yeah. Now I don't even think about it because the whole world, this whole world of catheterization. Like you only see it on TV.
Bill Peace 23:04
Right, yes, you do see it on TV, yeah. Um, but back then that was very controversial, because in the past, they put an indwelling catheter into a guy. That was it exchange once a month by yourself.
Jillian Weise 23:19
Oh, wooow, okay. Okay.
Bill Peace 23:22
So, everybody got UTIs.
Jillian Weise 23:24
Okay.
Bill Peace 23:25
So, Colombia was on a cutting edge.
Jillian Weise 23:28
Okay.
Bill Peace 23:29
And there are only three physicians in the United States that were recommending that. And there were some men at the time that refused. And just put the indwelling in, that's it.
Jillian Weise 23:40
Yeah.
Bill Peace 23:42
And you know, those guys struggled a lot, but I had two UTIs after I was paralyzed. I haven't had a UTI since I was 20 years old.
Jillian Weise 23:50
That's a huge difference, yeah.
Bill Peace 23:58
I still see the same urologist. And, you know, I was getting sick. And he said, "Look, if you intermittently catheterize you will live a typical life. Just stay with me, and I will, you will stay healthy. Do what I say and this is the future." And now that's the norm.
Jillian Weise 24:17
Yeah.
Bill Peace 24:17
But at the time that was controversial. But no one at the time talked about sex. I mean, you know.
Jillian Weise 24:25
Right, well people obviously still aren't ready to talk about it. I mean, when you were saying that it's like, you get a 2017 mindset. My thought is: it it almost means that since you can't talk about sex in the hospital, the only kind of sex that happens in the hospital is violent, criminal, predatory sex.
Bill Peace 24:44
Right.
Jillian Weise 24:45
Because you can't talk about the other kinds of sex that's happening in the hospital. And we all know it is!
Bill Peace 24:50
Yeah.
Jillian Weise 24:50
Like we all know that there's some kind of stuffs happening in the hospital [laughs].
Bill Peace 24:54
Yeah, every day.
Jillian Weise 24:56
It's got to be taboo, or it's got to be, umm...
Bill Peace 25:00
But this is the demonization of sexual sexuality for people with a disability. You have a disability. You're, just it's not part of your life.
Jillian Weise 25:14
Yeah.
Bill Peace 25:15
Um, after my son was born, I was asked for years, "Is he your biological son?"
Jillian Weise 25:24
Oh, wow.
Bill Peace 25:25
Um, I had pediatricians that would not treat him because they deemed me incapable of caring.
Jillian Weise 25:31
Noo?
Bill Peace 25:32
I lived in constant fear of child protective services being called. Um, indeed, when he was born, I didn't want to circumcise him, but that became an issue very quickly. And I realized that I'm different enough. I can't, and that's not an argument-
Jillian Weise 25:52
Yeah.
Bill Peace 25:52
I'm really gonna go down. Because then I just became an impossible parent.
Jillian Weise 25:57
Mhm.
Bill Peace 25:58
You fast forward, he gets older, and he's in college. And he's like, "So how long after you were born was your dad paralyzed?"
Jillian Weise 26:07
Wow!
Bill Peace 26:09
So that is just entrenched.
Jillian Weise 26:11
That's deeply entrenched thinking.
Bill Peace 26:12
It's deeply entrenched.
Jillian Weise 26:14
Yeah.
Bill Peace 26:15
And then when you really think about it, why? Well, the most common sexual dysfunction for paralyzed men is retrograde ejaculation. We don't go forward, we go back. I mean to pop a pill is, you know, is super easy. However, to this day, there are three fertility clinics in the United States that specialize in fertility for spinal cord injured men.
Jillian Weise 26:43
Wow.
Bill Peace 26:44
San Francisco, Michigan, and New York. What's a guy doing in Kansas that's a middle-class farmer.
Jillian Weise 26:54
Mhm.
Bill Peace 26:57
He doesn't know anything!
Jillian Weise 26:59
Yeah.
Bill Peace 26:59
The docs don't know anything. So you get a case like five years ago, Tim Bowers. He's an Indiana guy, lower middle class, has his own little mechanic shop in a rural town in Indiana. He's an avid deer hunter. I suspect he had a little too much to drink, had a fight with his wife who was pregnant, and he went deer hunting. And when he was trying to get into the tree stand, or you know how these work
Jillian Weise 27:32
Yeah, I know.
Bill Peace 27:33
The most dangerous time is falling asleep or getting in it?
Jillian Weise 27:37
Yeah.
Bill Peace 27:37
He fell and he broke his neck.
Jillian Weise 27:39
Oh goodness, okay.
Bill Peace 27:41
So he's brought to the local hospital, family shows up, sister's an RN, ER nurse, get him off the vent. So they had him in an medically induced coma, and they refused to transport him to major trauma center. And they had the bioethics consult, and said, "We want him to make his own medical decision." And they took him out of the medically induced coma. And the next day, they portrayed life for him as a bent, bent quad. Unable to ever hold your child, you will live in a nursing home, you'll never have a job, you'll never hunt. You can't have children.
Jillian Weise 28:19
Oh my god. And what would you decide-
Bill Peace 28:23
Yep. Given that information? And they pulled the vent and he died 30 minutes later. You know, this was seen by the Peggy Battens of the world as this wonderful, empowering,
Jillian Weise 28:39
Wow.
Bill Peace 28:40
Autonomous decision making strategy. And I remember I was at the ASBH, I gave a paper about this and I called it "The End: Compassionate Homicide." They were really upset with me.
Jillian Weise 28:53
Mhm.
Bill Peace 28:54
But I'm sorry, they killed that man.
Jillian Weise 28:56
Yeah,
Bill Peace 28:56
They killed him in a local hospital. You know, and I've seen these things. You've been in a hospital where the shit hits the fan?
Jillian Weise 29:04
Mhm.
Bill Peace 29:05
Where, you know, the ER has a family of six coming in where five are deceased, you know?
Jillian Weise 29:14
Yeah.
Bill Peace 29:15
The whole social structure.
Jillian Weise 29:16
Yeah.
Bill Peace 29:17
And atmosphere.
Jillian Weise 29:18
Mhm.
Bill Peace 29:19
And the family factors. So..
Jillian Weise 29:23
Okay, so go back to, so you get your, so you get your feedback from your two colleagues. You do some revision, then...
Bill Peace 29:31
We move forward. I'm thinking-
Jillian Weise 29:33
Who's your editor, Alice?
Bill Peace 29:34
Alice [Dreger].
Jillian Weise 29:35
Okay.
Bill Peace 29:37
And Alice was really very helpful. You know, she was great editor. And we were really worried about the cover. We thought it'd get sent back as pornographic.
Jillian Weise 29:48
Okay.
Bill Peace 29:49
Because it had to have the double mastectomy, the woman.
Jillian Weise 29:52
Yeah.
Bill Peace 29:52
And that's what we were all worried about. It was not a blip on anybody's screen.
Jillian Weise 29:58
Okay.
Bill Peace 29:59
So what I understand is the new president of the Northwestern hospital. The hospital has just bought, a new president was brought in. And he saw my essay and freaked.
Jillian Weise 30:18
Really!
Bill Peace 30:20
It was pornographic.
Jillian Weise 30:22
So, but that the president of the hospital is even reading Atrium is a bit of a surprise to me and I don't know why. You know what I mean?
Bill Peace 30:29
Nooo.
Jillian Weise 30:29
Okay.
Bill Peace 30:30
Atrium is like the Hastings Center Report.
Jillian Weise 30:32
Oh, okay, okay.
Bill Peace 30:33
It's-
Jillian Weise 30:34
It's passed around.
Bill Peace 30:35
It's passed around.
Jillian Weise 30:35
Okay.
Bill Peace 30:35
So like, you go into Northwestern, uh, rehab.
Jillian Weise 30:40
Yeah.
Bill Peace 30:41
It's in every waiting room.
Jillian Weise 30:42
Oh, wow, okay!
Bill Peace 30:44
So you go to the Hastings Center-
Jillian Weise 30:45
It's everywhere.
Bill Peace 30:46
It's everywhere. You go to any bioethics conference, it's everywhere.
Jillian Weise 30:50
Okay.
Bill Peace 30:50
So, Atrium in the rehab world is everywhere.
Jillian Weise 30:53
Yeah.
Bill Peace 30:54
It's the avant-garde.
Jillian Weise 30:57
Journal.
Bill Peace 30:58
Journal of bioethics.
Jillian Weise 31:00
Okay.
Bill Peace 31:01
And the hospital had just purchased the rehab facility.
Jillian Weise 31:06
Okay.
Bill Peace 31:06
And they had a branding agreement. And that's the new thing and hospital that taglines and remember, in '78. Rehab for spinal cord injury is dead. Fast forward today, it's high profit volume.
Jillian Weise 31:24
Yeah.
Bill Peace 31:25
Because you have exoskeletons, you teach people how to walk again.
Jillian Weise 31:29
Yeah.
Bill Peace 31:30
Giant money being poured into it.
Jillian Weise 31:32
Yes.
Bill Peace 31:33
You've got people with stem cells who are going to China.
Jillian Weise 31:37
Mhm.
Bill Peace 31:38
In '78, they said they came to the room. And they say, "You're paralyzed. You're never gonna walk. You can cry for two days. But that's it."
Jillian Weise 31:46
Yeah.
Bill Peace 31:47
Just move on with life. Injuries were complete and incomplete. And now, with severe spinal cord injury, bruises, whatever. It's really complicated, because they put you in a hypothermic state.
Jillian Weise 32:00
Yeah.
Bill Peace 32:01
They flood your system with steroids. So we have people that 40 years ago would have been paralyzed now kind of walk around a little bit.
Jillian Weise 32:09
Yeah.
Bill Peace 32:10
Or have better sensation, or a lot more return. So there's a huge scale that never existed before. And it's high profit.
Jillian Weise 32:24
Mhm.
Bill Peace 32:24
And I'm not on message.
Jillian Weise 32:26
Okay.
Bill Peace 32:27
To this day, they don't do sexual, the sexual education.
Jillian Weise 32:32
Wow!
Bill Peace 32:33
I talked to a guy last year, newly paralyzed, and I asked him, I said, "What was your sex ed?" And he said, "Oh, it was the weirdest film, it was black and white." And I stopped and I said, "The lady had a full bush. And it was really grainy, and she gets on top. And it's just like, bad porn?" "How do you know?" [Jillian laughs] (simultaneously) "It's the same video." It's 30, 40 years on. They're not talking about, you know, very sub basic fertility issues. How to get the... I mean, I see it in the back of magazines now.
Jillian Weise 33:19
Yeah.
Bill Peace 33:20
Like it's a little home kit. It's no big deal.
Jillian Weise 33:24
But even than it's just about the utility, period. Like what about the actual reproduction? Is that a pleasure instead of a-
Bill Peace 33:26
Yeah. No.
Jillian Weise 33:31
-How can we get pleasure? None of that?
Bill Peace 33:33
Pleasure is never inputted.
Jillian Weise 33:35
Yeah.
Bill Peace 33:37
This is the irony to me, we have a whole range of spinal cord injuries now. So.
Jillian Weise 33:45
Mhm.
Bill Peace 33:45
That range of sensation is very complicated.
Jillian Weise 33:48
Mhm.
Bill Peace 33:50
So where, why are we not talking about that? In the olden days, you could somehow justify it with a complete name plate injury, but now it's this whole range and we're just not talking about it.
Jillian Weise 34:03
Yeah.
