Lives Worth Living

In one word, wow! I finally got to see Lives Worth Living the documentary about disability rights broadcast on PBS. This is an outstanding film for those intimately familiar with disability rights and those that have never been exposed to this largely disregarded part of American history. All the key figures I hoped to see were included in the film--my personal hero Ed Roberts, Judy Heumann, Fred Fay, Bob Kafka, Tom Harken and many others. I am not the least bit ashamed to say I got teary eyed a number of times. This was my history, our history on film. I carefully observed not only the important protests from the 1970s but the evolution of wheelchair technology. Yes, I saw the old clunkers Everest and Jennings manufactured for decades and compared them with modern day wheelchairs. Amazing how once the corporate monopoly Everest and Jennings exploited ended around 1980 wheelchair technology advanced by leaps and bounds. This is why I liked the film so much--it can be viewed by a person such as myself who has studied disability history and find it greatly rewarding. Yet at the same time a person with no knowledge can be introduced to the subject and come away with a basic foundation in disability rights.

All the reviews I have read are uniformly positive. Only one long review has been published to date. I am sure more are in the works. The sole long review I read, "The Promised Land Will Be Wheelchair Accessible", by Jeff Shannon was excellent. Shannon, a quad since 1978, the same year I was paralyzed, weaves in a larger discussion of disability rights into the review. I met Shannon this summer and we had a long lunch on the Seattle Waterfront. We have had similar careers, me in anthropology, Shannon in film reviewing. We have our differences but there is mutual agreement on the importance of disability rights. Given this, I was not surprised that both of us got choked up when I KIng Jordan spoke about the afternoon the ADA was signed. Jordan described the definition of the American Sign Language symbol used to express a long awaited achievement, the word "Pah". I did not know this word but as Jordan describes it and signs "Pah" I was overcome with emotion. I really am equal to others. What a feeling. I just wish the reality matched the feeling.

I do have one significant problem with the film. While righteous indignation is palatable throughout the film, I worry the uplifting end could be misleading. The culmination of the film is clearly the passage of the ADA. There is a sense among those with unfamiliar with disability that the ADA solved all our problems. Yes, Judy Heumann notes that oppression and problems still exist but that is not what many will remember. I can readily envision this film being widely show in high-schools where students will think well we solved that problem--discrimination--with the ADA. Meanwhile in the same building is a student with a disability that is segregated to a resource room and transported to school on a short so called special bus. This is discrimination and segregation in a socially sanitized and accepted form no different than what tok place before the ADA was signed into law.

Republicans Emotional Use of Disability

http://youtu.be/y_O_6ycisIE

In the last presidential election when Sarah Palin used her son Trig to establish herself as an expert on disability rights I was appalled. Over the last two months a few people have sent me emails about Rick Santorum, a deeply religious right wing Republican. Why, people have asked, am I not blasting him? He is after all following Palin's disability handbook. That is Santorum is using his daughter who has Trisomy 18 as a emotional prop to appeal to right to lifers, those opposed to health care reform, and so called traditional values Republicans love to talk about. I simply do not take Santorum seriously but when someone sent me the link to the ad on You Tube above I had to write something. Watch this long political ad without either getting angry or sick and you have a stronger stomach than I do.

Based on the reviews posted on You Tube this ad is exceptionally successful. People love it! Sadly this does not surprise me one bit. Emotional arguments devoid of any factual basis about disability always touch the hearts of people who know nothing about disability. And the skeptic in me would estimate that means 90% of the country will fall for the rhetoric in the political ad. This makes me crazy as a quick google search, "disability rights" will reveal a wealth of information. This information will undermine the emotional response the Santorum ad was designed to prompt. Facts people. Facts and politics. Here is a fact Santorum does not want you to think about nor do any other republicans--disability is a valid political issue. Disability has a central place when it comes to health reform, aging baby boomers, and laws such as the ADA that was gutted by conservative justices put in place by former President Bush.

Forget the sentiment, ignore the tear jerking. Lines such as "Some people describe people like Bella as ‘disabled children, I look at her and I look at the joy, the simplicity, the love she emits, and it’s clear to that we are the disabled ones, not her.” People with a disability do not need pretty words and sentiment. People with a disability need equal rights. People with a disability need equal access to education. We need politicians to support IDEA so children like Santorum's daughter will get a good education. But Santorum plans on cutting spending on education. Do I really need to tell readers exactly who will be hurt the most? Santorum is also against the Affordable Care Act. He even goes as far as to suggest people with a disability will suffer and die if it is enacted. He conveniently leaves out the fact the vast majority of disability rights groups support the ACA. The fact is health care reform will help people with disabilities. Perhaps as a Senator he is unaware that access to insurance for people with a disability is difficult at best and financial ruin common. And lest readers think I am simply spewing out anti Republican rhetoric, I am not. I have no problem with conservative politicians. I do however have a huge issue with the way conservative Republicans skew facts and question their ethics since 9/11. We thus have people like Michelle Bachman who thinks water boarding led to the discovery of real facts. So what if it did? The American government is not supposed to sanction much less torture any human being. We are not supposed to detain people without cause or legal representation but we do. We are supposed to be allowed to dissent and have freedom of speech. But when that dissent becomes inconvenient we send in the police. Here I am referring to Mayor Bloomberg who sanctioned the police raid on Occupy Wall Street. That raid took place at 1AM, the media was barred from the area, the park was declared a no fly zone and no one really knows what the police did evicting protesters. Does this sound like democracy? Not to me as I find dissent our patriotic duty.

Let me reiterate. The above is not a rant specifically against the Republican Party or Santorum. He is just the latest conservative politician to use his child with a disability as a political prop. Some of these thoughts were prompted by Steven Kuusisto with whom I will end this post. He wrote: "The more I think about the GOP the more I wonder if ever again the best in our nature will clarify for truly decent conservative people. I happen to know many such folks. That well meaning principles have been sacrificed at the alter of theocratic extremism is terrible news for our republic. This is still a nation of good people. We deserve a good Republican party. Plenty will say I'm sniffing airplane glue." I don't think Kuusisto is sniffing glue. I am surrounded by such conservatives where I live in the wealthy suburbs of New York City. Good people largely even if I do not like their politics.

Four Walls Creeping In

It has been two weeks since I found the blister on my hip caused in large part to the Halloween storm and no electricity for almost a week. I was at wound care today. The wound is better, not much but better. I am still stuck in bed and will be for a while. This is very hard. I am overwhelmingly sad. I am coming to terms with the fact I will most likely not be healed until Christmas. Even then my skin will not be up to withstand the rigors of skiing. I had dreamed of skiing out West this winter. Looks like that is a pipe dream now. And in my grim mood I wonder if I will ever ski again. I wonder if I will ever resume a normal life. It is hard to make plans knowing one small mistake can leave me bed bound for months. At least I can function. I am not in a nursing home. I do not need my family to stay in my house and care for me. But life seems very restricted. Yes, the four walls of my bedroom are closing in and I am not happy.

Halloween Storm: Great Havoc

This is the pretty view of my property after the Halloween Storm. Never in my life have I seen over a foot of snow fall in October. My pumpkin never got carved, something I love to do, and I feel bad for the local kids. No trick or treating took place. The not so pretty pictures involve downed power lines on my road, destroyed trees on my property, limbs and branches everywhere. The road I live on looks like a bomb hit it for days. Clean up is going to take a while, months Frankly I did not believe the forecast and was not prepared. We never get significant accumulations of snow in October. Well, this was a historic first. A record setting storm far worse than what Hurricane Irene wrought. I was without power for almost six days. I held fast for over two days until real disaster struck. One cold powerless night I went to sleep in my son's bed and buried myself under a pile of blankets to stay warm. I even wore a wool hat to bed. When I woke up I had a bad blister on my original wound. I abandoned my home, got a guest room where my mother lives, and went to wound care. I have a blister. For anyone else this is no big deal. For me this means weeks in bed again.

Some good has come out of this. Thanks to my brother I now have a working generator. It will power my bed for about 12 hours before it needs to be refueled. I learned never ever to use heavy blankets for warmth. I got to spend a few days with my mother. She is a cool old lady as my son would say. Thanks to her generosity my skin did not evolve into a huge problem. When power came back on I had the bed company service it and move it into my bedroom. Yes, I am out of my living room. I am now like many other Americans who actually sleep in their bedrooms. This enabled me to clean my living room and move all the furniture around. My living room has never looked so good or clean.

I lost an entire week due to the storm. Nothing got done as my access is the internet was limited to my phone. I missed out on a few important issues I wanted to write about--an anti accessible taxi editorial in the NY Daily News, more on the Dr. OZ show, I missed attending an anti Euthanasia conference, and more. So yes, here I am stuck in bed but my spirits are not down. After months in bed a few weeks to endure will be a piece of cake. I am not worried about ski season or teaching next semester. The only being that is having trouble adjusting is my black lab Kate. She loved being where my mother lives. She was a star, all the old folks petted her and shared lab stories. She was thrilled by the attention. And now she is confused. She slept in the living room for a year and is now back to her crate in my bedroom. She is unsure where to sleep. But we are simply happy to be home and have power. Life is pretty basic.

Powerless

I lost power Saturday afternoon. After three days I gave up keeping my place warm. Too much work. The fish in my aquarium all dead. My complaint list is long and I am not a happy camper. Worse yet my skin broke down. Saw MD, not a real problem but it could become one in a heartbeat. Very worried and in desperate need of power that makes my life go. The storm on Saturday that brought over a foot of snow at my house caused far more damage than hurricane Irene. At best, I hope to get power back Friday. Next week is more likely. I will post some pictures when power comes back. My property was hit pretty hard, likely lost my beloved American chest nut trees. Never thought I would say this after last year but I miss my clinitron bed and living room.

Lives Worth Living

Thursday night, Lives Worth Living, a documentary film about the history of the disability rights movement will be broadcast by PBS. The advance reviews have been outstanding. The film maker, Eric Neudel, has received many awards. Beth Haller, author of Representing Disability and an expert on the mass media, was "completely wowed by this powerful documentary that packs 50 years of disability rights history into 54 minutes." I will not be able to see the film Thursday but I am sure PBS will rebroadcast it. I urge all those with even a passing interest in disability rights and history to watch the film. I for one am deeply moved when I see disability activists from the 1960s and 1970s. For me it is like looking back in time. I get to see the old hair styles, clothes and terrible wheelchairs produced by Everest and Jennings. If this sort of imagery is interesting check out the Disability Rights Education Defense Fund You Tube videos on line.

More on Dr. Oz and Assisted Suicide

Stephen Drake at Not Dead Yet has put up another post about the Dr. Oz show. He refers to me and provides a link to my post about the Dr. Oz show. For this I am very grateful. It is very important that people read what Stephen has to say. He has been on the front lines so to speak for quite some time and Not Dead Yet is needed now more than ever. The Dr. Oz show highlighted this in spectacular fashion. Drake and Diane Coleman are forward thinkers whose voice needs to be heard. For instance, Drake anticipated the Dr. Oz show was going to be hopelessly biased in favor of assisted suicide. This has not been a good week or two for disability rights. We have the Dr. Oz show pushing assisted suicide and Mayor Bloomberg spouting off about the "dangers" of having accessible NYC taxis.

In an effort to reaffirm the rights of people with a disability and for the skeptics out there who may think I was exaggerating what I wrote about the Dr. Oz show, below is part of what Drake posted at Not Dead Yet. I had not met Danny Robert and Nadina LaSpina before last week and was duly impressed. I think their take reinforces what I wrote and exactly why Not Dead Yet is needed. I urge all to read the final paragraph very closely.


Bushwhacked in the Land of Oz

Danny Robert & Nadina LaSpina

Wednesday was a dark and rainy windy day here in the Big Apple. We were invited to be part of a taping for the Dr. Oz Show on the topic of assisted suicide. Our car service pick up was scheduled for 7:15 AM. We couldn't find the van which was parked far from our door and got soaked but we got to the accessible entrance to 30 Rock before 8:00.

Julie Maury, Bill Peace, Hope Derogatis and Ari Ne'eman, all people with disabilities and disability rights advocates, were already there. We had each been interviewed by producers prior to being invited to appear on the show. We were directed to a large elevator to the sixth floor where we all showed our IDs and were given our tickets. We were received very cordially, with big bright smiles, by the production staff who all looked like high school cheerleaders. “Are you excited to be on the show?” one of them asked. “As much as I am when I go to the dentist,” Nadina answered.


Though we had never seen the Dr. Oz show, we expected it to be low quality, shallow and (especially having read Steve's blog) extremely biased. But we had no idea of how great the bias and how blatant the hostility that awaited us in Oz's studio would be.

We were brought back to the elevator and then escorted into a small “holding room." With some difficulty, we all squeezed in. Dr. Byock, a palliative care doctor who opposes assisted suicide, stopped in to introduce himself and we all pleasantly shook hands. He was scheduled to be on the small expert panel, and we were scheduled to be in the pro-or-con segment of the audience.

We talked among ourselves, deciding who would make which point. Very naively, we thought we would all get a chance to speak. Then a young man, accompanied by someone with a video camera, entered and introduced himself as Greg. He said he was a producer and asked us to articulate our opposition to physician assisted suicide. Each of us had something to say and he listened and asked questions. He explained that in the first segment of the show, Dr.Oz would bring out his special guest, Montel Williams, who would explain why he is in favor of assisted suicide, then Dr. Ablow would argue against, and then a woman with ALS would be brought out. Greg asked that we not interrupt or heckle, and that we would get a chance to speak after the woman with ALS.

Montel gave a dramatic performance, grabbing his legs from time to time while he spoke, his face contorted in pain. He said he wants to have a way out when the pain gets unbearable and he wants to die with dignity. Dr. Ablow gave some good arguments, saying "I would never legally allow physicians to decide who should live and who should die... physician assisted suicide is a slippery slope..." But right from the start it was very obvious that Dr. Oz and most of his audience were not interested in hearing any arguments against.

Then Dr. Oz introduced Dana, an African American woman in her late 40s or early 50s with ALS. Her attendant rolled her to a spot right in front of the panel. She sat in a manual chair, somewhat reclined, wearing a ventilator mask. A video played on the big screens, showing Dana before tragedy hit, healthy, strong, athletic... (very exploitative). Then the ventilator mask came off (the ventilator alarmed briefly) and Dana began to speak. She said she had been living with the progression of ALS for 8 years and she was tired. She hated having to depend on others for her care and she couldn't take it anymore. She said she was depressed, lonely, had no friends left and she wanted to die. Nadina and I looked at each other and said “that's why she wants to die.” Nadina quickly jotted a note in preparation for her comments.

As Dana spoke, the sighs and the sniffles from the audience kept getting louder. The cheerleaders went around with boxes of tissues, the bright smiles on their young faces now replaced by mournful expressions.

Dr. Oz asked Dana's son how it felt to live with his mom. He said it was sad and that, though he didn't really want her to die, he also didn't want her to suffer anymore. Dana's daughter said: "It's heart-breaking, unbearable to watch her suffer. She's had enough." Dana's sister, who has her health care proxy, reiterated: "She can't take it anymore. She's suffered enough." It was obvious to us (but I guess to no one else) that the family had “had enough.”

Greg had promised that after the break, we would have a chance to speak. After we heard Dana, we decided that I should go first, since my physical condition is, outwardly, very similar to hers, and my need for a ventilator is actually greater than hers. So I told my story, including my MS diagnoses, the break up of my marriage, how bleak the future appeared to me then, and the resulting near-suicidal depression. I said how glad I was that no lethal prescription was available for me then. I said that meeting disabled people and becoming part of an activist community got me out of the depression. That I fell in love with Nadina 18 years ago and, in spite of my losing function and at times becoming depressed, I lead a full, rich and very happy life.

Nadina picked up here and said that losing function often is accompanied by temporary depression, and that having available a lethal prescription would be very dangerous for someone with a progressive disability. Then she started saying that assisted suicide was usually presented as a “choice for the terminally ill,” but here we were talking about people (Montel, Dana) who were not terminally ill but had disabilities. Dr. Oz didn't let her continue. He quickly walked away with the mike, while Nadina yelled “I'm not finished.”

During the break, Nadina complained to Dr. Oz that she had not been allowed to speak. "I'll come back to you," he said. But he never did.

In the next segment Dr. Oz brought on two more panel guests, Dr. Ira Byock and Barbara Coombs Lee from Compassion and Choices. Dr. Byock was very good, stating there was no need for assisted suicide given the availability of good palliative care. He pointed out to Dana that she could refuse treatment. He did so in a very gentle way. He asked her: “do you want to tell your doctors, maybe next time you're hospitalized with pneumonia, that you'd rather not have them do anything, let nature take its course?” (Maybe not his exact words, but something like that). Dana did not answer. Dr. Oz quickly stepped in. “Let her answer” Nadina yelled out, “she doesn't want to die.” But Dr. Oz had quickly changed the subject.

Montel kept repeating he wanted to maintain his dignity. A few times we yelled out “What do you mean by dignity?” and “Do you think we have no dignity?”

Barbara Coombs Lee didn't say much. She didn't need to. By the time she came on, the argument in favor of assisted suicide had been completed (if there ever was an “argument” – from the beginning it was clear which side Dr. Oz was on and that the show had been scripted). Dr. Ablow was booed a few times. Dr. Byock was booed when he said, "We're not talking about choice but about control. You want to make sure you die with your boots on and make up."

Every time a new segment started, Dr. Oz would say things like: “The question today is: do we have the right to end our own life if we're suffering?” or “if our quality of life has deteriorated?” On the big screens the question was: “Do you think you have the right to end your own life?” (just as sloppy and as the show’s online survey, conflating suicide with assisted suicide, conflating the right to refuse treatment with assisted suicide).

The final segment was supposed to be questions and comments from the audience. We were divided by an aisle into pro and con. During the break, Nadina managed to get the attention of the producer, Greg, who interviewed us before the show. “Dr. Oz didn't let me speak,” she told him. “NDYers have a unique perspective. We want to be heard.” He answered: “I'm sorry.”

Dr. Oz let a right-to-lifer speak briefly. He called me (Danny) a hero. And Montel replied: “let's not pit patient against patient.” Julie yelled out: “We're people not patients”, but without the microphone, none of us could be heard. A hospice nurse spoke against assisted suicide, mentioning how a woman's life was prolonged long enough for her to hold her grandchild in her arms. But most of the comments were from the other side of the room. Horror stories about people made to suffer, told by someone other than the person, and you couldn’t tell the real cause of the suffering.

Nadina, Julie, Bill, Hope and Ari kept raising their hands but Dr. Oz totally ignored us. One guy said: "These Not Dead Yet members are selfish. They don't care about people suffering. They don't want anyone to have choice.” We yelled out “It's the other way around.”

Dr. Oz kept ignoring us. But at one point, he was right next to Ari and Ari had his hand raised right in front of Dr. Oz's face. Dr. Oz asked him: "Are you right to life?" Ari answered: "No, I'm with the National Council on Disability.” Dr. Oz let him speak and Ari was great. He gave some statistics about Oregon, and even mentioned the Latimer case, the Canadian farmer who got a lot of support from the assisted suicide movement when he was prosecuted for murdering his 12-year-old daughter with cerebral palsy.


We tried after the show to reach out to Dana. Julie tried to catch up with her and her family, but was pushed away by Dr. Oz's production assistants. All of us NDYers were extremely frustrated and agitated. We all agreed we had been setup and just used as window dressing.

That audience was a microcosm of our society. Most every one in that audience was convinced that disability is a fate worse than death. Most of those in favor of assisted suicide thought we were selfish for wanting to live no matter what. Others, like the right-to-lifers, sitting along side us, saw us as heroic and saintly for putting up with what they imagined was great suffering and not succumbing to sinful thoughts of suicide. Sitting in that studio, we saw more clearly than ever how very important Not Dead Yet's work is and how extremely difficult.