Awareness training

San Fransisco here I come...blah blah blah with the song

As the chair of the access and welcoming committee, one of my tasks is to recommend someone or an agency to do the awareness training of the hotel staff prior to our conference. Well wouldn't ya know it...I do just that kind of training. While the hotel isn't required to use me, our contact at the hotel and I had already developed a rapport - there was a problem with getting an accessible room that had two double beds. Apparently crips aren't supposed to have friends, PCAs or other need to have 2 beds in their rooms. That was worked out nicely and in the process, I found an ally.

Turns out a very cool ally to have.

I'm doing the awareness training. Notice how I use the term "awareness" and not "sensitivity". You can't make someone sensitive to others' needs. They are or they aren't. You can, however, make someone aware of what someone might need, want or of their culture, and hope that that awareness leads to sensitivity. In any case, this training would normally cost at least several hundred bucks to $1,000 or more. What I'm doing instead, and in the process hoping to make connections with Marriott corporate, is to offer the training in exchange for travel, room and meals. That's right folks, I'm getting a free trip to SF. My only real costs will be the rental car to/from the airport here (cheaper than airport limo or risking parking in NYC), meals/snacks in the airports, and any fun stuff I do while there.

I'm also expecting to get my registration for the conference comped.

I spoke with the executive director of the organization a while back and he said that if I could get this trip paid for by Marriott, a significant savings for RID, he would comp my registration fee. I would have had to go to the hotel anyway for a site visit, hence the expense. Whether or not I did the training was up in the air until this past Thursday. The fact that this is the third time I'm on the access committee, second time chairing, and there's virtually NO benefit to us except a pat on the back and recognition in the program book, was also a factor.

With any luck, Marriott corporate will love me and hire/contract with me to do these same trainings around the country. Free travel and hotel stays...not such a bad deal.

westward ho....

180

~~ Sung to the tune of "Food, glorious food" from Oliver ~~

Snow, slippery snow
Ice, what are you good for?

Well I finally broke down and bought 4 new tires today. I've needed them for a couple of months, but the winter has been so mild it hasn't been an issue. Ok, so I've done more than my share of slipping and sliding during the 2 or 3 snow and ice events we've had, but it really hasn't been bad. A curb here, a snow bank there. My trusty Subaru outback has been wonderful, despite my obvious negligence.

Until today.

I was heading to work and took my eyes off the road for a split second (doesn't everyone say that?), and I started skidding. Big time. Thankfully the roads were pretty empty, because I slid into a couple of 90 degree turns - first right, then left, then right again - and then I spun around 180 degrees and ended up facing the opposite direction. Thankfully and oddly enough, I was really calm the whole time. When the car stopped, I very calmly drove to where I could safely turn back around and simply kept going. No fear, just focused on getting to work. I know, I'm nuts. Most logical people would have called the office and told them they weren't going. Nope, not me.

Also right then and there I decided to pay attention to the obvious message: STOP BEING SO FUCKING CHEAP AND GET NEW TIRES!

So when my client didn't show, not surprising, I called Town Fair Tire and was there as soon as possible. $632 and an hour later, I had 4 brand new tires, a full front and rear alignment, and a much safer car to drive. Understandably, I was a bit skittish driving home, but the car was fantastic. Amazing what happens when you're not a cheap asshole.

For the record and all those who will say I spun because I hit the brakes, didn't steer into the skid, etc - my foot was off the brake the entire time, I steered into the skid and at one point I even let go of the steering wheel and let the car do it's thing. No, that's not when I spun out. It actually stopped the skid. That or the inertia of the car.

Either way, I'm $632 poorer, but definitely wiser and safer.

Closing, take 2

We finally did it. The house is sold, papers signed, checks passed around. The closing finally went through without a hitch. Our lawyer kept his arrogant asshole side in check and their lawyer did some of his work and research to ensure it would actually be done. The fact that both parties really wanted this sale to go through helped a great deal. We were able to recognize that it was our lawyer who had the 'tude and made mistakes and their lawyer who was oh-so-picky and we could put all that shit aside and do what needed to be done.

So, FINISH! For you non-ASL using folks, that means done.

Ahhhhh

This is the first weekend in nearly 2 months that I've had nothing to do. Ok, so I have yet to do my taxes and the house could use a good cleaning, but for the first time in nearly 2 months, I don't have to go to my SIL house and clean, pack or otherwise work.

I feel almost guilty. Almost.

I'm not sure what to do with myself. I've done abolutely nothing all day. I woke up late and spent a gorgeous day in the house. Rick came by and dropped off a handcycle that I plan to ride. Rick and I have tentative plans to run the NYC Marathon this year. He's done it several times, I've never done it.

We'll train when it gets warmer. Right now, however, that involves too much exercise on this glorious, lazy day.

and the asshole surfaces

After weeks of no contact and then third party contact telling us to go fuck ourselves, The SIL from hell shows up here at our house.

I'm getting ready to feed the dogs and there's a pounding on the front door. I knew Deb was going shopping so I figured she had her hands full of groceries and couldn't reach the bell. I didn't think twice and opened the door.

In walks stupid, asking what's going on, when she's going to get money and what's happening with storage. Fucking bitch. I should have thrown her out.

Without yelling, which could have turned violent - she's pretty fucked up and volatile - I told her we were pretty pissed that she didn't do a damn thing to help during the entire process, that she told us to go fuck ourselves (didn't deny it), and that her attitude, behavior and zero effort made everything that much harder. I also told her that Art, the guy we hired to do most of the cleaning, will probably charge her for packing and moving her shit, that we packed piss-soaked clothes because we were told by her to "pack everything". I told her that several pieces of furniture that she expected were in the dumpster because they either fell apart when they were moved or were so soaked with rat/mouse/cat piss that there was no way we were putting them in storage. I was pretty damn civil for what I should have said. For her part, she stood there and listened.

I also told her that she looks like shit, is angry and nasty and the only reason she's living in a cleaner environment is because she was forced to move, that if she wasn't forced, she'd still be living in squallor and filth and it's not normal. I told her about the women's center having free counseling and of a friend who offered the same free help. What she does with that information is up to her, but at least I put it out there. I want her to get the help, but I'm sure as hell not going to hold her hand for it. Christ, it's everything I can do not to tell her to go fuck herself and that she's made our lives a living hell.

I was good. I did my mitzvah for the day. Now can I go get a drink?

The closing that didn't

I hate lawyers. I really do. They all have their place in the world, my father was a lawyer, and I wouldn't be here without him, but ultimately, I hate them. They make the simplest things in life so fucking complicated.

The house was finally completely cleaned yesterday. Nothing left, floors laid bare, save the rest of the dust. The weekend was the final push of moving furniture and boxes to storage and cleaning (I'm still sore). Yesterday the absolute last of the moving and cleaning was done. We were supposed to go to closing today and have check in hand.

Then the lawyers stepped in.

Deb's parents had a lot of medical problems and not a lot of money. They let bills go to collections, leaving liens on the house. We knew this and planned to pay off as many as needed and get lien releases from all debtors. There was one bill where a small claims judgement was made in 1989 for $280. 1989, folks. Small claims statutes end after 10 years so it should have been written off. Despite the obviously small amount (including interest, not even $800) and the fact that the included court costs were $20 - practically guaranteeing it was small claims - the paper didn't say small claims, but Superior Court. A Superior Court judgement is open for 20 years.

Ok, so we need the lien release signed from the debtor. One problem. The company that won the settlement NO LONGER EXISTS. Therefore we couldn't get a lien release. The lawyer that represented them DIED 2 weeks ago. Despite a month of letters, faxes and phone calls, his firm never got back to our lawyer.

So we're sitting around the table, and after a lengthy phone conversation with their title company, the buyers' lawyer decides that since they plan to flip the house before fall, they can't go ahead with this sale with the lien on the house. Our lawyer pulls an asshole move and while talking to the buyers' title company, refuses to go ahead if they don't accept his wisdom that it's small claims and should be closed.

They walked away from the table pissed. We walked away from the table pissed. The real estate agent walked away pissed.

Yes, their lawyer is doing her job and protecting her clients. So is ours. Their lawyer is picky as hell, ours pulls an asshole power move and gets caught.

After they left, Deb went back in and somehow convinced our lawyer to dig deeper into the aforementioned closed company. Initially he didn't want to overstep the other dead lawyers boundary, but fuck, he should have done that after a month of no responses. In less than 10 minutes, he located one of the doctors that was part of the defunct company and agreed to pay him what was owed, theoretically resolving the entire issue. Deb thanked him. I told him I wish the phone calls had happened a half hour ago.

With any luck, we go back to the table before the end of the week and sign everything and BE DONE WITH IT.

I hate lawyers.

Maggie dog

My sweet Maggie, a dog everyone thinks is one of the sweetest dogs they've ever met, is in pain.

For the past couple of weeks she's been yelping occasionally when she takes a step. It's nothing I could see or feel, nothing that bothered her when I moved her front leg around, palpated her leg, shoulder, foot. Just the occasional yip of pain. Ok, so she's 10 years old and maybe arthritis is setting in. I wasn't terribly concerned.

Until I moved her neck.

She began to shiver in pain, holding her head to the right and holding her foot off the ground.

She went to the vet yesterday on an emergency visit and they drew bloods. Her kidney problems are at least stable (a month of k/d, herbal kidney support pills and lots of water). Thinking it's a pinched nerve and having limited time yesterday, we took her back today for x-rays.

There's definitely something on the films and it's with a disc in her neck. She's either got a disc that's calcifying, an infection, or, worst case, cancer.

For an additional $150, the films are being sent to a radiologist to see if s/he can further refine a diagnosis without being invasive.

She's on an anti-inflammatory - Deramax - I think it's a steroid - for 2 weeks and when the senior vet comes back from vacation, depending on the probable diagnosis, we're going to discuss accupuncture and chiropractic for her. Yup, he does those things for dogs. If it is cancer, god forbid, we're going to discuss palliative care.

The vet brought up something else as well. Maggie has had adult onset parvo, off and on kidney problems for years, and a host of other issues that generally healthy dogs don't get. She brought up the idea that maybe her immune system isn't normal. Whether it's genetic or acquired who knows, but it's an interesting thought. Not one I'm happy with, but not something to ignore, either.

If we can and do go ahead with the accupuncture and chiro for her, that means she's going to have to stay relatively calm for 6-8 weeks. Uh huh. It's roughly like telling a 3 year old they can't run and play. She may be 10 but she's got a lot of puppy in her. She's gonna need it.

Mini-Intervention

I want your honest opinions about this, both the idea of it and what I plan to say.

At some point in the next week or so, probably after the closing when there's less chance for her to fuck it up, I want to approach my SIL and essentially have a mini-intervention. It doesn't have to include Debbie. In fact, it's probably better if it doesn't. SIL is more likely to hear me if she's not also stressing with Deb. You might think they're like oil and water...they're more like kerosene and a match.

Ok, so here's what I plan to say:

B, I know you might not want to listen to me, I'm sure you don't, but I have to say something to you. Before you say anything, please hear me out. Let me say all of it before you respond.

I've been a part of this family for 18 years. I am really honored and blessed to have been accepted by your parents and you as a member of the family. I'm sure it wasn't easy.

I know you've got to be absolutely terrified right now. I can't imagine being in your shoes. The last few years and especially few months have been extremely hard on everyone and I've been worried about you for a while. I've watched you become more and more depressed, withdrawn and angry. The house was never that clean or organized, but at least it was liveable. There was always running water, heat, and looked like a house. We had no idea it had become so bad. If we did, we would have intervened/helped, something, a long time ago. You have to admit, you were living in dangerous, unhealthy, horrible conditions. I really think you need professional help. I think your depression has gotten way out of control. I really wish you would go for help. I know you don't have insurance and money is really tight, but the women's center in Danbury is a really good start. I think they can even see you for a limited time for free. At least it's a start. I'm not telling you what to do, it's your life, but I just hope you'll get the help and support you need. I don't have much family left.

Then hand her a card with the phone number.

So...what do you all think? Keep in mind she's extremely sick right now, not thinking clearly, and definitely NOT the sharpest tool in the shed.

Reprieve

Well we have a reprieve. The closing has been pushed off to March 5th or so, not next week. Good thing since we didn't do much at all today.

Who am I kidding, we? It was myself and one woman we hired to sell stuff on eBay. Deb works every Sunday, so she can never help, and all my/our friends who have been helping are either burnt out or going on with their lives. It's our problem, not theirs, and I can't blame them for running far and fast. Hell, if I wasn't in the middle of it, I'd run too.

So today our new eBay friend filled her SUV yet again with stuff to sell and I took only a box or two home. After walking up and back down the steps twice, my legs were jello. I had nothing left. I suppose if I really pushed myself I could have done a storage run, but I would have paid for it all next week. Not worth it.

I'm not used to this taking care of myself thing. So torn between being proud of myself and feeling guilty and lazy. I'll work on that.

So we have another week and weekend of work ahead of us. I just hope we have the guys we hired working during the week. That's the ONLY way we'll have any chance of being close to done.

finally a light at the end of the tunnel

I can't believe it's been over a month since my last post. Ok, I can. It's been a fucking insane month.

We have been dealing with Hell House, House of Horrors, Nightmare Inn - take your pick - for the past 6 weeks. Five 30-yard dumpsters later, 2 storage units and two women who sell on eBay, there is FINALLY an end in sight. Even though we could easily take another 2 or 3 weeks to clean and sort shit out, the closing is next week.

This weekend is the final push to clean, pack and load the storage units. During this process, we've had some amazing friends helping us. Some have come only once, others 2 or 3 times or more, cleaning unimaginable filth, working their asses off, all simply because they're amazing people and great friends. We're going to take everyone out to dinner in the next couple of weeks, a celebration of sorts and a huge "can't thank you enough" party. Even the guys we've been paying will be a part of it. They've had to put up with so much, all saying they've never seen anything like this.

We've also been dealing with Happy Pants, Stupid, Fucking Cunt, Bitch for Brains - take your pick - Deb's sister, this entire time. She has done ZERO towards dealing with the house. The only thing she has done is take some furniture and a couple of bags and boxes of her own clothing and stuff. THAT'S IT. She hasn't even thrown out a bag of daily garbage that she created. She has come by and cursed out everyone working, instilled fear in a grown man (looking for the burning cross and sheet over her head, the fucking bigot), thrown boxes, clothing and bags around the house, broken the window because the door was jammed, and ransacked already packed boxes. Oh yeah, big help.

She won't even tell us where she's living. Everything has to go through the town social worker, another piece of work, who has vehemently defended Stupid, saying Deb's been at fault for everything and oh poor misunderstood little sister.

What. The. Fuck?!?!

Debbie has done nothing but try and help this bitch. Everything she does is with the mindset of making sure she's getting a fair deal. Maybe not the best deal, but at least fair. Debbie has lost sleep over this and is taking Xanax to deal with the nerves and stress. And this fucking bitch has the nerve to say she's at fault for Stupid's predicament? Just give me one reason...

After she broke into the house, Debbie was wild-eyed, afraid that she would come after her/us at our home. Ok, so it's the PTSD rearing it's ugly head, but the Bitch is definitely sick enough to threaten or hurt us. First foot on our property and I'm calling the cops.

Rambling more than usual tonight, but tired, stressed and so ready for this to all be over. So, if you're in the area and want to help this weekend, let me know and I'll send you directions. There's a party afterwards.

Pathology and house cleaning

Today we started the task we've been dreading for years. We started cleaning out the house where Debbie's sister B lives, where she's always lived. The house is sold and we're trying to salvage whatever we can before it's too late. We got there around 8:15 in the morning and worked until after 4pm. We also had 3 incredible friends come by and help. They were amazing. I can't thank them enough, and they're all eager to come back and help more! Trust me, we all wore hats, dust masks and gloves and probably should have worn respirators.

The woman is 45 and has never lived away from home. Ever. She never moved out, fucked up, and moved back like many of us have. She's simply always lived there. To be fair, there is a great deal of psychiatric pathology going on. It's undiagnosed and untreated, but there's no denying it, ok, so she does, but that's part of the disease. She's always had problems, probably why her parents enabled her so much - they just tried to take care of their sick daughter. Didn't do her any favors, but I can sorta understand it. My goal for her is to have her hospitalized, diagnosed and treated, and once she has the proper diagnosis, to get her into the disability system. She may be able to function better with treatment, but I honestly think there's some major cognitive issues as well. She just doesn't process information normally. If she were in the system, she could have insurance, health care, a steady income, someone to make sure she took care of herself...etc.

Anyway, back to the house...when their parents died, Debbie and B got it. We let B live there with the understanding that she would take care of the bills and taxes. We foolishly expected that she would keep it reasonably livable. We were wrong. The house was never very clean, but at least you knew it was a house and people could live there without fear of it collapsing or otherwise killing you. If a health inspector walked in, he'd instantly condemn it and throw a lock on the door.

There is no running water. There hasn't been in over 2 years, maybe 3. She's been buying or somehow getting gallon jugs of water for herself and the dog. FYI...we rented a port-a-john for the cleaning up process.

I cleaned up/threw out a dozen bags of used cat litter, along with a full-to-the-brim litter box that was in the hallway. The cats died 2 years ago.

There was mouse and rat shit throughout the entire kitchen, on nearly every surface. There were hundreds of plastic shopping bags around the house that had been made into mouse/rat living quarters.

Every inch of the ceiling and every surface in the livingroom was obscured and covered by dust-laden cobwebs. We're talking an inch or more of dust.

There was a layer of papers, unopened mail, magazines, books and godknowswhat that was about a foot deep throughout the entire livingroom. I slipped and fell twice.

To give you a rough idea: We threw out around 50 contractor bags of garbage, and that was just for the kitchen and creating a pathway in the livingroom. We're not even 1/8 of the way done. Why not a dumpster you might ask? Because the way the parking area is set up, no, no driveway, the driver would have to maneuver around a subaru wagon that hasn't moved in 4 years. The parking area/bank that it would be on might not support it, either. It probably would, but I'm sure the company doesn't want to risk it. At least for now, a few thousand more bags should do it.

Obviously both Debbie and B are having a hard time with this. B is feeling and acting like a trapped animal, lashing out and being exceptionally nasty. She is losing the only home she's ever known, feeling like she's being evicted, and she's losing the cocoon of insanity she's lived in/created for herself. She's rightfully terrified. Debbie is finally seeing the depth of B's illness, but she's still trying to make sense out of insanity and expecting her to take part in the process. I'm just hanging in there, bringing friends to help and being as supportive as I can. It's all I can do right now.

I could go on, but words don't do it justice. I also promised Debbie I wouldn't post pictures, but if you want, and I know you, I can send them. Just ask.

Too tired to keep writing.

Nauseating and appalling

Prepare to be nauseated, appalled and outraged. This little girl has been sexually mutilated for the sake of convenience, to make her parents' lives easier. The parents should be arrested for child abuse. The doctors who performed the surgeries should lose their licenses and the hospital should lose their JAHCO certification. If a mother had asked to have her disabled son's testicles removed in order to keep him small or because she didn't want to deal with an erection, would the doctors and hospital ethics board approve the surgery? I highly doubt it. But mutilating a girl is ok. Unbelievable.

The family's nauseating website:


A different viewpoint:

Can I get a urine sample please?

Debbie had her knee surgery on Thursday. It went well and the doc removed a bone chip, rather than repairing torn cartilage as originally suspected. It was done at a surgery center, rather than the hospital, and for whatever reason, she was the only case that day. We had the attention of no less than 4 nurses, joking and goofing with us the whole time.

One nurse was particularly, um, stoopit. Or a stickler for stupid rules, or whatever. She insisted Debbie take a urine pregnancy test.

Initially all she asked for was a urine sample, but something she muttered, I forget what now, made me realize she wanted the sample for a pregnancy test.

Me: Is this to test for pregnancy?
Stoopit Nurse: Well yes, we have to make sure before we give her any medication.
Me: She's not pregnant, we can guarantee that.
SN: How do you know?
Me: We're lesbians.
SN: Well lesbians can still get pregnant, ya know. There's plenty that have children.
Me: Well yes, we can, but you have to make a concerted effort. It's not just a timing mistake, a hole in the condom, or a forgotten pill.
Debbie: You have to have sex with a man.
SN: But I still need to make sure Debbie isn't pregnant
Debbie: You have to have sex with a man. Trust me, I'm not pregnant.
Me: She's 52, menopausal, and a lesbian. Pregnancy isn't an option.
SN: Oh, she's already gone through menopause? Well then, I guess we can forgo the test.
Me: It should have been let go when we told you, for obvious reasons, there's no chance of pregnancy.
SN: But I had to make sure.
Us: dumbfounded look
Colleague of SN: Debbie could have just signed a waiver. I don't know why she was so insistent.

Neither do we.

So, surgery went well and she's already up and walking without a cane for short periods of time. We went food shopping yesterday and by the middle of the trek, she was definitely beyond sore (no shit) and ended up using a motor cart in the last store. Today she's doing nothing and she goes back to work tomorrow.

And for the record, Debbie is not pregnant.

Are you two still together?

I had a colleague/sometimes friend ask me this today. I hate when a straight person asks me if Deb and I are still together, like without the word marriage, our relationship is simply dating.

It's been 18 years. We're not dating. Get it?

There was a general staff meeting today and we all had lunch afterwards (catered sandwiches, salads, etc). The usual catching up chit-chat was happening, and this colleague/sometimes friend came and sat next to me. It started fine, then it happened.

"Are you and Deb still, uh, together?"
"Are you still married?"
"Well I only meant, umm, I wasn't going to, umm, it's not like asking are you divorced or something"
"Uh, yes it is. Why do people always feel they can ask that question?"

Then she got up in a huff and walked away, going straight to our boss. He never looked my way and I have no idea what she was saying, but I don't really care. She insulted me. It may have been simply out of ignorance, it probably was - she's definitely not the sharpest tool in the shed - but she still needs to know that that question is demeaning and I'm not going to put up with it.

I had actually wanted to engage her in a discussion about societal norms, assumptions and cultural sensitivity. Apparently a tantrum is more her speed.

I'm going to meet with my boss next week and discuss it. Not to get her into trouble for insulting me, just to let him know she pissed me off and to share my side of the story.

Cheap thrills

Hey duuude...my cat's a stoner, man. She doesn't prefer the usual feline drug of choice, catnip, but rather the selective lack of oxygen to get her high.

That's right, our cat chooses to cut off her oxygen to get a high. Or at least that's what we think.

She will intentionally flop her head over the edge of a basket, bucket or other container, move her neck around until she's comfortable, and wait until she starts to gag from putting pressure on her trachea, then she'll step back and choke a bit. Once is never enough. Two or three times is her norm, sometimes more. Often we have to intervene and stop her. All the while she has a "yeah baby" look about her.

Apparently catnip is out of her price range.

Infuriating and reprinted without permission

I find this article utterly infuriating. It makes me sick. First of all, using the word "defects" is demeaning as hell. I fucking hate it. Being Deaf is NOT a defect. It's outside of the norm, but someone who is deaf is NOT defective. Someone who is disabled is NOT defective. The reason disability exists AT ALL is because society isn't 100% accessible, physically or attitudinally. People are assholes when it comes to disability. That is the only reason why we are viewed as anything less than perfect or human. In the 1800's, the majority of the population of Martha's Vinyard was deaf. Nobody saw it as defective or wrong. They simply lived and everyone on the island knew sign, whether they were hearing or not. There was no such thing as disabled because you were deaf. The disability came if you didn't know sign language.

The article itself is infuriating. The comments that follow are nothing short of disgusting, uninformed, ignorant, ableist, and rude as hell. I can't figure out how to add a comment, dammit, cuz you know I'd be flaming these pricks.

Essay
Wanting Babies Like Themselves, Some Parents Choose Genetic Defects
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By DARSHAK M. SANGHAVI, M.D.
Published: December 5, 2006
Wanting to have children who follow in one’s footsteps is an understandable desire. But a coming article in the journal Fertility and Sterility offers a fascinating glimpse into how far some parents may go to ensure that their children stay in their world — by intentionally choosing malfunctioning genes that produce disabilities like deafness or dwarfism.

The article reviews the use of preimplantation genetic diagnosis, or P.G.D., a process in which embryos are created in a test tube and their DNA is analyzed before being transferred to a woman’s uterus. In this manner, embryos destined to have, for example, cystic fibrosis or Huntington’s disease can be excluded, and only healthy embryos implanted.

Yet Susannah A. Baruch and colleagues at the Genetics and Public Policy Center at Johns Hopkins University recently surveyed 190 American P.G.D. clinics, and found that 3 percent reported having intentionally used P.G.D. “to select an embryo for the presence of a disability.”

In other words, some parents had the painful and expensive fertility procedure for the express purpose of having children with a defective gene. It turns out that some mothers and fathers don’t view certain genetic conditions as disabilities but as a way to enter into a rich, shared culture.

It’s tempting to see this practice as an alarming trend; for example, the online magazine Slate called it “the deliberate crippling of children.”

But a desire for children with genetic defects isn’t new. In 2002, for example, The Washington Post Magazine profiled Candace A. McCullough and Sharon M. Duchesneau, a lesbian and deaf couple from Maryland who both attended Gallaudet University and set out to have a deaf child by intentionally soliciting a deaf sperm donor.

“A hearing baby would be a blessing,” Ms. Duchesneau was quoted as saying. “A deaf baby would be a special blessing.”

Born five years ago on Thanksgiving Day, the couple’s son, Gauvin, was mostly deaf, and his parents chose to withhold any hearing aids.

Controlling a child’s genetic makeup, even to preserve what some would consider a disease, is the latest tactic of parents in an increasingly globalized society where identity seems besieged and in need of aggressive preservation. Traditionally, cultures were perpetuated through assortative mating, with intermarriage among the like-minded and the like-appearing.

Modern technology has been adopted for this purpose; for example, a quick Web search reveals specialized dating services for almost any religious or ethnic subgroup. Viewed in this context, the use of P.G.D. to select for deafness may be merely another ritual to ensure that one’s children carry on a cultural bloodline.

Still, most providers of P.G.D. find such requests unacceptable. Dr. Robert J. Stillman of the Shady Grove Fertility Center in Rockville, Md., has denied requests to use the process for selecting deafness and dwarfism. “In general, one of the prime dictates of parenting is to make a better world for our children,” he said in an interview. “Dwarfism and deafness are not the norm.”

Dr. Yury Verlinsky of the Reproductive Genetics Institute in Chicago, who also refuses these requests, said, “If we make a diagnostic tool, the purpose is to avoid disease.”

But both doctors said they would not oppose sending families to other doctors who might consent.

Today, parents increasingly use medical procedures to alter healthy bodies. In 2003, for example, the Food and Drug Administration granted approval to Eli Lilly to market human growth hormone for “idiopathic short stature,” or below-average height in children — to make them taller, purely for social reasons. Theoretically, almost a half million American boys qualify for treatment. Why, some may argue, should choosing short stature be different?

Mary Ellen Little, a New Jersey nurse with dwarfism, had her first daughter before a prenatal test for achondroplasia was available. For her second child, she had amniocentesis. “I prayed for a little one,” meaning a dwarf, she told me.

The wait, she recalled, was grueling, since “I figured I couldn’t be blessed twice, but I was.” Both her daughters, now 11 and 7, are “little people.”

The major barrier to Ms. Little’s simply choosing her children’s height is ease. To her, P.G.D. to select for dwarfism is too invasive; however, if having dwarf children were simply a matter of trying to conceive at a certain time of the month or taking a pill, she said, “I would do that.”

Barbara Spiegel, a homemaker in Maine who has dwarfism, had a first pregnancy that ended in miscarriage. She underwent genetic testing during her second pregnancy, and because of a laboratory mix-up involving petri dishes, was told that her child would grow to normal height. She would have loved the child, she said, but in an interview, she recalled thinking, “What is life going to be like for her, when her parents are different than she is?”

She worried that the child would be teased excessively. Ms. Spiegel’s best friend, who has average height, has a daughter with dwarfism, and the child sometimes comes to Ms. Spiegel for support; maybe an average-size child would also go to others for motherly advice. For a brief time, Ms. Spiegel grieved because she felt a dwarf baby would have been “just precious.” But after a week, the mix-up was detected and she got her wish.

Genetic testing for dwarfism has an extra ethical wrinkle. When both parents are dwarves, their embryos have a 25 percent chance of normal height, a 50 percent chance of dwarfism, and a 25 percent chance of what is called a double dominant mutation, which is usually fatal soon after birth. Because many dwarf mothers worry that their fetuses might have the fatal mutation, those who conceive without assistive technology, like Ms. Little and Ms. Spiegel, often undergo amniocentesis or chorionic villus sampling to detect double dominant mutations. Many consider abortion if the test is positive — but many would carry either a dwarf or an average-height child to term.

Preimplantation genetic diagnosis can identify embryos with double dominant mutations, so they can be discarded before implantation, while preserving embryos destined for either dwarfism or average height. In dwarves, then, P.G.D. could help avoid many doomed pregnancies if double dominants were never implanted. But then a choice would have to be made, since the genes are known. And many dwarves might select embryos for dwarves — although others might choose those for average-size children.

Dr. Stéphane Viville, who first reported P.G.D. for dwarfism in 2003 in France, used it to eliminate embryos with dwarfism among couples where one member was a dwarf and the partner had average height. Interestingly, if confronted with a situation where both parents were dwarves, Dr. Viville says that he most likely would implant only an embryo destined for normal height — and forbid not only double dominants but also dwarf embryos.

I think Dr. Viville fears that P.G.D. could be used willy-nilly to make genetic freaks. Yet the same fears pervaded the issue of in vitro fertilization decades ago. The small number of P.G.D. centers selecting for mutations doesn’t bother me greatly. After all, even natural reproduction is an error-prone process, since almost 1 percent of all pregnancies are complicated by birth defects — often by more disabling conditions than dwarfism or deafness.

More important, as a physician who helps women dealing with complex fetal diseases, I’ve learned to respect a family’s judgment. Many parents share a touching faith that having children similar to them will strengthen family and social bonds.

Of course, part of me wonders whether speaking the same language or being the same height guarantees closer families. But it’s not for me to say. In the end, our energy is better spent advocating for a society where those factors won’t matter.

Dr. Darshak M. Sanghavi is pediatric cardiologist at the University of Massachusetts Medical School and the author of “A Map of the Child: A Pediatrician’s Tour of the Body.”

Debbie's knee

Debbie finally got the results of the long-awaited MRI on her knee. She injured it about 6 weeks ago in a car accident and it took this long for worker's comp to approve it. Fuckers.

She needs surgery. This is not surprising, since the doctor was pretty sure she had torn something. He just didn't know what. The MRI showed several pieces of cartilage floating around in her knee. I'm guessing there's much more damaged that he'll find when he goes in. The instability and swelling have to be coming from more than one cause.

The surgery is scheduled for Dec 28th and I plan to take that day and the next off. By the time the long weekend is over, she should be mobile enough for me to go back to work. When I told the office scheduling goddess, she said I should run it by our boss since another interpreter in the region is also off that week. I told her I'd talk to him, but I still plan to take the time. It's not exactly a vacation and it's not my problem or fault if she can't fill requests. Didn't tell her that part. Not that stupid.

Commercialism

I hate Christmas music. I admit it. Hell, I announce it.

Growing up as a Jew, I was force-fed Christmas music from Thanksgiving until New Years in school, in stores, on radio and TV and by my christian grandmother. In school we had the "Holiday/Winter" concert every year, mostly consisting of butchered pop tunes and Christmas songs. The 1 or 2 Hannukah songs thrown in to appease us were no consolation. They also sucked. I have a long standing history of hating the annual onslaught of music.

It should come as no surprise then, that I am even more nauseated by the inescapable music that's been permeating the airwaves and eardrums since Halloween. I totally understand having the music playing in malls, retail stores and places where you'd expect to be bombarded by commercialism and the need/urge to buy things. That's how the stores earn their money and they SHOULD be hitting you over the head with it.

I do NOT, however, expect to be bombarded with it at the gas station, in restaurants, bars, doctor's offices or in the FUCKING BATHROOM! I can't even take a shit in peace! These places have NOTHING I care about buying for my friends. Maybe a gift certificate, fine, but playing christmas music isn't going to encourage me to buy one - good food and ambiance will.

Please, people, stop the onslaught. We all know it has abolutely nothing to do with religion or spirituality. It's 100% about commercialism, making the sale, getting into the black. We don't all get around the piano in the living room and have happy family memories signing christmas carols anymore. Those times are long gone. The majority of kids don't give a shit about christmas if they don't get the things they want. Oh, and then there's the week off from school, that's a bonus. The families and kids that DO care about the religion and spirituality DON'T care about the commercialism and therefore won't be as swayed by your incessant playing of carols.

We Jews and others who hate the commericalism will appreciate the effort. Thank you.

Priorities

When the fuck did christmas shopping become a contact sport? Or violent? Or competative?

It's.Shopping.People. Black Friday is the best demonstration of American greed and gluttony I have ever seen.

It's shopping for things you want, NOT need. There is no dire emergency or need to get the newest Playstation or other electronic gadget. There is no need to get the latest fad toy for your kid.

A man here in CT was SHOT and robbed of the cash he was carrying. He and 3 friends planned to buy 4 Playstation 3's...to SELL on Ebay. Not for his own kids, nephews, or to give to sick kids at the hospital, but to sell and make a profit. So what does the store do? They hold 4 games and GIVE HIM one for FREE. And now the store looks like a hero. Pretty fucked up.

The media have created the hype and the urgency to obtain THE toy, gadget, fad whatever. The stores add to the insanity by limiting the number of said fad product that will be sold and opening at earlier and earlier hours. Yes, I understand the concept of black Friday and making a profit, but at the expense of our safety? Morals?

What people NEED is
clean water.
Healthy food.
Sustainable farming practices.
A clean environment.
Civil rights.
An end to war.

Until we have all of the above and more, I don't give a shit what is on the store shelves, what the media says my nieces and nephew must have in order to be happy, or what some celebrity decides is the "it" thing.

If anyone decides they must give me something for christmas, make a donation to one of the organizations I listed. It will mean much more to someone to have clean water, food or shelter and I have everything I could possibly need.

Chocogasm

I have found the most amazing chocolate to ever grace this planet, ok, my tongue.

I have always heard about how wonderful chocolate can be, how it can inspire poetry, induce wild sexual fantasies, even changed cultures. I've heard the stories, watched them on Food Network and History Channel, but thought it was nothing more than a benign way to get ratings or otherwise line the pockets of the film makers. Cynical, but that's me.

That is, until I tasted this chocolate.

Now I admit, nay confess, that I enjoy the most unthinkable of all chocoholics nightmares...I like white chocolate. I know the arguments, that it's not even real chocolate, but I still like the stuff. I also prefer milk chocolate to dark. So sue me.

So maybe I'm not a true connoisseur of chocolate, who cares? Bridgewater Chocolate is amazing! It's expensive, but soooo worth it. Now I truly understand what someone means when they wax poetic about chocolate and all its magic. I finally get it. And hey, it's a relatively cheap orgasm.